What a Pain in the Bum !

Rough Justice In This Cruel Cruel World....!

2012-03-07T21:44:00.001Z

Hi cyber friends and followers,

It's James here Carole's son, firstly apologies for the radio silence people it's been a bit hectic to say the least. You may be able to guess from the title this post is not a positive one.

Mum has asked me to take over her blog from now on as she no longer has the strength to carry on blogging at the moment, it's been a tough few weeks in particular since mum came out of hospital.

Literally as soon as she got home I think we all thought it wouldn't be too long before she needed some more time with some medical assistance, it was lovely to get her home and see her relax slightly but it was short lived as the problems started again once she had settled in, she couldn't carry on with the constant sickness and diarrhoea.

It resulted in her being admitted to hospital again......crap.! Told her other Kidney is no longer functioning properly......double crap! A drain has to be inserted via mum's nose into her stomach..... now your having a laugh tripple crap! So back on a drip to rehydrate her again, anti sickness injections and the list goes on and on. Surgery was discussed as an option but needed to consider it would be very high risk because of the low blood pressure and high heart rate, truthfully this was not an option we needed to even think about, why put mum and ourselves though this stress to really resolve nothing........ it's not going to change the final outcome and may be looking at a few extra weeks, on the other hand she may not make it through the op!

She is totally exhausted both mentally and physically, we have discussed between us as a family that mum has reached her limit, we always new there would be a cut off point and I think she actually passed it a while ago. It was never about "get as much time as we can" it was always "lets get some time whilst you have a quality of life", admittedly from a selfish point of view you sometimes find yourself thinking "I want mum here no matter what" those are sad moments when you are down because with a clear head I really don't want to see her suffering and wouldn't want to see her suffering for an extended period.

Having spent some time in the hospital and moved onto a general ward (6 beds) mum was deteriorating rapidly and just felt defeated, being exhausted and on a general ward is a nightmare, full of weird and wonderful characters and just not the place she needed to be. Palliative care have again been brilliant and had chats to offer there thoughts, basically "It your time now".

Mum has made her decision with the full backing off all the family to go to Trinity Hospice, luckily a bed became available on Tuesday morning and she was admitted. having visted her yesterday it was a releif to see her in there, so much calmer and peaceful, a place for genuine rest and care, all the staff seem very friendly and caring with a few staff members coming into introduce themselves and just a general chat.

mum is still very weak but she is happy to be there, well not happy because she doesn't deserve this at all but guess you know what i mean. there has been some very hard moments with us all crying but the key thing i keep telling mum is "You have nothing to prove, your decisions need to made for YOU now as a lot of previous decisions have been made for us, trying treatments and surgery she didn't really want to do".

I was dreading having the chat with Dj to tell him things are changing, more importantly how quickly things are changing, how do you tell a 12 year old boy that his mum will not be coming home and is now moving into the hospice! Rab filled him in briefly and corrected his thinking that you don't go the hospice to get better and you go there to be peaceful for the end of your journey, I had a long talk with Dj as always promised that as soon as we knew things were changing we would let him know. honesty has also been the best option for Dj, this is not something we could protect or hide from him and he has a right to prepare himself for the difficult times ahead. We talked about all sorts of things including how amazing "Daddy" (Rab) has been over the last two years, he has been a mountain of strengh, he doesn't like to talk about his feeling too much but has got better over the last few months. Just want you to know Rab the whole family thinks you are amazing and we love you loads and loads.

2 Years worth of treatment has made us all have buckets full of tears, millions of screaming moments with anger, mood swings, selfish thoughts, moments of faith but mainly doubt, feelings of helplessness.......

and after all this....................... not one clear scan or a period of time that mum could relax and not think about this b*stard Cancer or as we now have to say Cancers! It seems like not only has mum had bowel cancer she now gets ovarian to top it off!

A CRUEL CRUEL WORLD.....!

Keep the comments coming as I'll be printing these of and taking them to mum in Trinity as a pick me up, you have all been a great help during mum's journey and I know she has made some real friends blogging, I know lots of people have found her posted helpful too.

If you have found her blogg useful or interesting maybe you would consider donating a pound or two for Trinty Hospice, it takes £8,000,000 a year to keep them running and only a third is received from government funding, meaning they needs to raise approx £5,000,000 in private donations.

One Week back at Home........

2012-02-25T17:18:00.002Z

So today is Friday, 24th February 2012 and I've now been back at home for a week.

It's been a really really tough week :(

On discharge from hospital the damn diarrhoea decided to make a come back - with a vengeance! I've been having to get up out of bed 3 - 5 times a night just to do bag changes, it literally is like having a tap attached to me, it just pours out.
My Palliative care nurse was on leave this week but I spoke to one of her colleagues who faxed a prescription to the GP for me for Buscopan tablets (to stop the continual stomach cramps) and also for Loperimide to stop the diarrhoea (only problem is, it doesn't actually stop it!)

Yesterday I spoke to one of the lovely nurses from Beating Bowel Cancer. They always seem to know when I'm at a really low point and ring me that day....I filled her in and we discussed together how totally shit this whole thing is. She gave me some advice re the diarrhoea tablets and rehydration without going back into hospital....to be honest for the past few days I've felt that I will end up back there sooner rather than later.

Today I feel a little better...had a light diet yesterday as the previous day I'd spent most of the afternoon throwing up in bed and Rab was in and out providing me with a clean bowl, tissues and drinks to keep me going. My husband is an amazing man - I never realised how amazing he was and I never truly appreciated him before all this. I wouldn't be able to do this last bit now without him.
But as I said, today I did feel a little better despite the continuing diarrhoea....I finally realised it's because the Buscopan tablets have stopped the awful painful cramps and this has made me feel that I can cope with the remaining ongoing symptoms for now. I'm determined to get past this bit and find a way to feel 'well' again. I'm determined to prove them wrong with what they now expect for me as a realistic time span. I still have things to do here.

Friday, 24th February was also Rab's birthday. Last night Sarah and Manolis came over along with James and Leanne and we had a lovely Chinese meal. I didn't eat too much but I did have a gorgeous Spring Roll (yummy, my favourite thing to eat ever....I even dreamed about them in hospital) and a small portion of rice with beef & black bean sauce.
Rab had some lovely presents and cards and felt just a little special I think :) I hadn't managed to organise presents for his birthday from me this year, but Leanne went shopping and chose some things that she knew I'd like, she even wrapped them for me - it's like having my own personal shopper :-)))
Thank you Leanne xxXxx

It's now Saturday and again I don't feel as bad as earlier in the week. The cramps are definitely under control now - the diarrhoea continues unabated, so I continue to eat Loperimide like sweets :) and do bag changes by the hour!
Rab made me a lovely light lunch today of toasted cheese sandwich and tonight he's making numerous tasty side salads (to try to tempt me to eat more) and a mushroom omelette.

It has been a lovely sunny day with blue skies and a totally fresh feel to the day - this makes me feel better in myself in general and although I know I'm not out of the woods yet (by a long shot) I'm still trying to find that exit route - the one that leads me to a longer, painfree life.
I've got it firmly fixed in my head that if I can get to March things WILL get better - obviously not for ever but at least for a while.

Keep that positive stuff heading my way because it's obviously working :)

Back soon xxXxx Much love to all xxXxx

Back home after my NHS trip........

2012-02-21T18:48:00.000Z

As you all know I was struggling with acute diarrhoea, raised temperature, aches, cramps and pains from 14th January. I kept thinking I could cope at home, I would get back on top of things eventually but then it hit me on the afternoon of 31st January when I looked in the mirror that if I didn't get myself to hospital I'd be found dead on the floor at some point. I then made the decision to get properly sorted out and rang my GP who insisted I go to Accident and Emergency for a full assessment.

I arrived there with Rab around 4pm and from that point on, everyone provided me with exceptional care and compassion.
To be honest initially I thought they'd keep me a day or so, get some fluids into me and send me home as a bit of a time waster with a dodgy upset stomach....however on admission they took bloods from me and it was found that my inflammatory markers were running at over 300. A 'normal' person has inflammatory markers around 0-5, so mine were apparently 'impressive' ....LOL. That's one way of looking at it I suppose.

For the first few days of admission they were completely puzzled with what was going on with my body. The acute diarrhoea, cramps, temperature raises were all pointing to something being very wrong but they couldn't work out 'what' was wrong. I also then started having periods of constipation. It hit me at one point that I had EVERY symptom of bowel cancer - that was almost amusing considering last time around I had virtually no symptoms at all.
I had at least 6 different teams involved in my care from General medical to Oncology and everyone of them tried to go the extra bit to help me. My care was amazing from arrival to discharge. My nurses on the ward were simply brilliant - so caring, compassionate and they made a huge difference to how I coped being in there for so long. Some of them would just come in, sit on the bed and chat. They didn't dress it up as anything except a 'shit situation' - they listened, hugged me and said I was 'amazing, so strong'..it all helped because when you're being bombarded with crap news every day you definitely start to lose the ability to be 'amazing' and 'strong' anymore.

Anyway, numerous x-rays, MRI's, CT scans later I was told that just about everything had changed....firstly T10 in my spine had now completely crumbled and the option of bone cement was off the table. It would now need to be a completely different type of spinal surgery to replace parts of missing spine...

I was also told that new 'masses' had been discovered in the pelvic region (damn, that was fast - nothing was in my pelvic region in December when I had detailed scans)...the new masses are suspected of being a completely NEW primary cancer - possibly Ovarian...another huge blow.

Then it was found that my right kidney had stopped functioning because a 'mass' had decided to grow around the tube between the kidney and the bladder shutting it down completely. They talked about a drain into an external bag and I was so pissed off about this. During the op they managed to get a stent into place to open up the tube without the need for an external drain or external bag - so at last something went right.

Prior to all this new info, the Oncology department had spent time talking me into doing a course or two of Chemo. They assured me that it could be 'tailor made' this time and that they could protect me from the horrendous side effects that I'd suffered last time around. However, without two functioning kidneys no-one was prepared to even think about Chemo - so that was the first thing that needed fixing.
Then of course if the new masses do turn out to be a brand new primary, Chemo is probably off the table completely simply because they can't really whack me with two different chemo's at the same time.
Surgery to remove any new masses also probably wouldn't be an option as it would take me too long to recover.
It felt like I was being continually whacked with bad news for a period of about 8 days in there. Every time a Doctor walked through the door it was to say 'I'm sorry but.........'........

I got to the point where I just couldn't take any more bad news and flipped completely when they tried to send me down for yet another scan. My lovely nurses on the ward and also the Stoma nurse, Anna, tried everything to protect me from any further bad news for the next few days.
Anna arrived by the side of my bed in the middle of my complete mini breakdown and got me through the next hour by simply hugging me and listening.
I told her I KNOW this will kill me now and I'm just not ready to go yet, she agreed that yes, it will kill you Carole - there's no way back from all this crap now and it's not fair but sometimes you've just got to accept that things are bigger than you..........I cried, she wiped her own tears away whilst keeping me on a even keel for a while and left me in a better place than I'd been in when she arrived. Thank you Anna - sincerely...xx.

Since then I've had lots of mini breakdowns - fairly short lived as I tend to pull myself together afterwards and carry on but they are there in the background. Simple things set me off.
I'm so so angry with this bastard cancer now....I took everything it threw at me, tried to fight back and get back on my feet only to deal with mets a fairly short time later. I never ever had a 'clear' scan - I never ever had a break from it all. THEN it decided to throw a whole new primary cancer at me - as I've said recently....I'm NOT a quitter but I do feel fairly defeated now.

However, I've now been released from hospital and I'm back at home being taken care of by my lovely husband, Rabah. For a while I didn't know if I was going to make it back home again - I really did feel that ill when I was in hospital, but I'm still here. He's determined to get me eating again, he's determined to make me well and get me back on top of this.
I'm determined to try my best - simply because I'm not ready to leave Rab or my boys just yet. I'm not stupid, I know it will end up not being my decision to make, but I can at least try.

You all know by now that I'm not a religious person - but I'll take any prayers you want to send in my direction. I'll take the positive thoughts, candles and vibes and hope that everyone of them helps me in my ongoing struggle to stay here longer.

Thank you all for caring about me and my family - I need you to know how much we appreciate it xxXXxx

Very quick update.....

2012-02-18T19:27:00.000Z

I have been in hospital since 1st Feb and was finally allowed home yesterday, 17th Feb....Update to follow but will have to be once I have found some energy from somewhere.

For now it's enough to say that the NHS have taken very great care of me over the past two and a half weeks, and right now I'm back at home being taken care of by my lovely Rab.

Thanks for all the messages, I'll get around to responding at some point.

Much luv xxXxx

Sticks, phones and plots......:)

2012-01-22T01:16:00.003Z

Today I woke up grumpy and sore - poor Rab got the brunt of my foul mood before he left for work (I've since sent a text and spoken to him to apologise for my crap behaviour)....My back was so sore today and my hip area too - but on a positive note, the 'flu' or 'drug reaction' (whichever it turns out to be) now seems to have settled down and I felt like I was back on the right road today. Managed to get out for the first time in 8 days - all good :)

Once I'd got the pain meds sorted the rest of the day was better - am sure Dj was relieved once my mood lifted too. I can be a really moody cow at times - but I'm always sorry afterwards. I'm conscious of the fact that I don't want them to be 'relieved' once I'm gone - because I was such a grumpy cow to be around at times!

Late lunchtime I took Dj for a haircut - we need to get his passport updated and he was adamant that he wasn't having his picture done until his hair was 'sorted'. So, one haircut later he's now happy to be photographed :)
Popped into the supermarket and picked up a few bits for dinner - actually felt like eating today and decided that I needed something tasty to kick-start my appetite again. Decided to make a Thai Red Curry with Wild Rice & naan bread - yummy

Sarah and Manolis came over in the evening and had dinner with us so that was lovely. Dj even came out of bedroom hibernation to eat with us - then the pull of 'Minecraft' was just too strong, so he disappeared back again leaving us adults to chat and have a cuppa.

I told Sarah that I was having trouble finding a nice walking stick - I don't want a traditional 'older' persons stick, if I have to have one (which I do now really) then I wanted a nice one - but couldn't find anything that looked right. Sarah got online and found me one we both liked - snow leopard design - so that's now ordered and hopefully won't take too long.
Then she sorted out my mobile phone deal for me online as well - I've been MEANING to do this for weeks now but just haven't got around to it. She transferred me onto a new deal that means for £10 a month I get unlimited text messages the following month - perfect for me as 98% of my mobile use is by text only.
Thanks Sis, don't know what I'd do without you......well, actually I do....I'd continue to say I need to sort out my mobile deal and I'd continue to pay for all my text messages - I'd still be limping around saying I know I need a stick but can't find one....so, Thanks for organising me and sorting me out :-)

As for the 'plot' bit in the title above...this relates to burial plot.
I've been looking around and more or less decided that I've found the place for my burial - Epping Forest Burial Ground. It's a woody area, adjacent to Epping Forest itself (52 acres have been sectioned off to use as a burial ground) it's all very natural with trees, shrubs, plants etc and you can only use biodegradable materials in the burial.
You can choose to have a bird box, bat box or memorial bench put there in your memory - something I thought would really appeal to Dj as he really likes wildlife, birds, nature. I can think of nothing nicer than him visiting to find the bird box is being nested in :)
We had a chat about this recently and he had a look on the website, he said it looks such a beautiful, peaceful place and his only concern was why we couldn't have all three memorials - the bat box, bird box and the bench...because I'm worth it :)
I feel this would be a nice place for the boys to visit rather than a traditional cemetery environment. I don't want to be buried in a cemetery - even thinking about being buried feels wrong, being in a cemetery feels SO wrong. I like the woods better :-)

http://www.woodlandburialparks.co.uk/Epping-Forest-Burial-Park/Gallery.ice

I'm going to go with the boys and have a look over the next few weeks and see if we all like it there. My Dad's only concern (well, not only concern, because obviously he doesn't WANT me to be buried at all)...was that as you have to use biodegradable materials 'the foxes might dig you up during the night'....LOL...
His other concern was that 'it's a bit far for some people to travel to'....again LOL.
I told him that if it was too far, people didn't have to come. I really don't think anyone expects me to choose a place that is convenient for THEM rather than me and the boys!
LOL Dad, you're soooo funny :)

Lastly, Happy Birthday to my little brother Eddie - have a good one bruv - much luv always xxXXxx

And then....the shit hit the fan!

2012-01-20T12:56:00.001Z

Well, not literally as I have a bag to keep it all contained remember :) BUT if I'd not had the bag things may have been very different.

Around 7pm on Saturday evening I started to feel really 'odd', queasy and just a bit generally unwell...nothing I could immediately put my finger on, just 'odd'. Rab was working late on Saturday night so I told Dj I was going to lay down for a while as I wasn't feeling too well.
Two hours later, around 9pm, I woke up in bed freezing cold with my teeth chattering as though I'd been abandoned in the Antartic, yet burning up to touch.
Dj appeared in my room to 'check' on me and immediately said 'Oh God mummy, what's wrong!' (I didn't realise I looked *that* bad)....told him I had a temperature and needed paracetamol so he went off to bring me those and water. He insisted on staying with me until Rab got home because he was worried that things were all going wrong now. It was at this point I realised that despite being as strong as he can be for me, he's also deeply worried about what is going on and when things are going to happen/change. He snuggled up next to me in bed and after a while my temperature went down a little so I was able to pretend to go back to sleep - he stayed a while longer then quietly left the room...as he left I heard him whisper 'I'll be back to check on you, don't worry'

The next few days were a complete nightmare - the fever was quickly followed by severe vomiting and diarrhoea, joint pains, nausea, the most awful banging headache, a complete and total exhaustion which meant even walking to the bathroom left me needing more sleep...that was mainly what I did for the following few days - sleep. I can honestly say I've not felt this awful for years - in fact I can't even remember when I last felt this awful. Every part of my body hurt, all the extra pounds I'd been trying to accumulate were gone in days, my energy levels fell to minus zero and almost a week later I'm still struggling to get back on top of things.
Today is Friday - 6 days now of feeling crappy, wiped out and weak but yesterday I managed to eat a few mouthfuls of hot food, not much but more than I'd been managing up to then. Today I'll try to make more effort but my appetite is at rock bottom....For the first 48 hours I couldn't even keep water down, so Rab went and got me Lucozade which actually did help. I managed to drink a few bottles of this and keep it down when water just wasn't doing the job at all.

I spoke with my palliative care nurse earlier this week who said she wasn't convinced that this was a reaction to the drug I'd been given. She feels that any reaction would have taken place within 24-48 hours and that gastric reactions to this drug are 'highly unusual although possible'....sigh......I just know this was a reaction to the drug, I know this wasn't a 'winter flu bug' - how do I know? Because I do.

She's since contacted me again today and said she's spoken to a different consultant who again feels that this is possibly not related to the drug as it's 'too unusual for anyone to react so severely, although of course it is possible'........So everyone agrees it IS possible but because it's unusual I should write it off as a 'flu type bug' - and I shouldn't wonder why no-one at home managed to catch this from me? (despite winter flu type bugs being highly contagious)
She then said of course the only way we'll know for sure is if I react this way next time - then we can be confident that it IS the drug and maybe the dosage will need reviewing.

I need to contact my Oncology team at the other hospital as I did some basic research into the drug last night. The reason they are giving me this is to try to increase the bone density and therefore reduce the risk of fractures - it will NOT give me longer, it will not stop the cancer, it is purely to give me some quality of life...
What I found last night was a couple of reports into use of this drug for Osteoporosis (bone thinning) all of these reports stated that ONE dose of this drug at 5mg was shown to still be effective two YEARS later...wait a minute! ONE dose can give up to TWO years protection against thinning bones? Why am I doing four weekly sessions of this then? Oh God! here we go again - more questions for me to find the answers to.....I asked my palliative care nurse about this today and she said it was just the standard dose that they give for cancer mets...but if it's shown to be in the system still after two years, do I really really need this every month?...decisions, decisions............more information needed.

Apart from all that how's the pain? It's still there...better controlled by the morphine based drugs and I can't honestly say that the bisphosphonate has made any real difference as yet.

The following few days after Bloods and Drugs....

2012-01-20T01:05:00.000Z

By Wednesday evening I definitely felt quite good - I decided I had reduced pain in my spine and hip so happy bunny. Don't get me wrong, I wasn't 'pain free' but it did seem less of a 'pain' - however Wednesday was also the day when my new drugs plan started so that makes it impossible to tell if it's a good reaction to the bisphosphonate drug or a good reaction to the new meds prescribed by the lovely C.

Thursday I managed to get out shopping with Rab - not far, just a short bus ride away but we were out around 2 hours and I didn't feel at any point that I couldn't cope and needed to get back home again. Since around October we've not managed to get out shopping because within 20 mins I'm saying 'I can't do this, I need to go home because the pain is just too much'.....so we got out and I coped well - Yay!
Finally managed to spend my voucher that James and Leanne gave me around a year ago (for Accessorize) - found a lovely handbag in there that matched my brown boots perfectly - however I then found a totally gorgeous scarf too.
Hmmm, decisions, decisions, which to have? - luckily Rab stepped in and said he'd buy me the scarf, so I got both :)) Brilliant :)

I then popped into another shop and found a nice pair of jeans, a warm jumper and a lovely top - good day for shopping obviously :)

Friday I spoke with my nurse, C, she rang to make sure I was feeling a bit better on the new pain meds and to adjust levels if not...Had a nice chat with her, she also asked about Rab and the boys and we said we'd catch up again early February - unless I need her beforehand. I have the number to get in touch with her if I have any issues at all. Feel better about a lot of things since she's been involved in my care.

Saturday morning I was really looking forward to my visitors, Lisa and her lovely son T, plus Tony. Both were travelling many many miles to see me and I was so pleased to know that the three of us would finally get together.
We are all fellow bloggers - initially we all met on a Cancer Chat forum and built an online friendship, which developed into much more.
We were, as Shents (Lisa) put it, the 'gang of five' who just gelled on first meeting each other online. Out of our five, we've lost 2 - David who passed away in April last year and Rose who passed away in June. The original plan was that all five of us would get together late summer last year - but it wasn't to be.

During the summer holidays I had met up with Lisa and her two gorgeous children (regular followers of my blog will recall that meeting back in August 2011 - we had a great day out with the children)...I'd spoken to Tony many many times by phone but we'd not actually met in person - however I wasn't in the slightest bit concerned because I knew we'd all just 'gel' the way we did online........and we did :)
Lisa and T arrived first and within 5 minutes Dj and T had picked up their conversation from where they'd left it, back in August - to listen to them you'd think they'd seen each other yesterday :)....

Whilst Lisa and I had a cuppa and a chat they went down into the back garden to shoot Justin Beiber with Dj's BB guns....(it was a poster, don't panic! and they wore safety goggles!)....
Lisa and I chatted about things and again it felt as though I'd only seen her yesterday, not 5 months ago. She is totally comfortable to be around, has a naturally sunny nature, is warm, friendly and someone you'd actually WANT to be friends with - a special lady indeed...and she'd travelled from the North of England to me, way down in the South, their journey took over 5 hours, just to give me a hug and some company.

Tony arrived shortly afterwards - he pulled up outside in his car at exactly the same time as James and Leanne arrived. I heard him call out to James ' James, where can I park' and again it felt as though it was a completely natural conversation with someone who was around regularly, not someone we'd never met before.
Tony came in, hugs all around - kettle on so lots of tea and chatting...then Sarah and Manolis arrived to meet Lisa and Tony too...more tea/coffee then we had lunch and finished off with some gorgeous donuts that Tony had picked up along the route. Again it had taken him 6 hours to get to me........
We finally managed to all get together and not only that, James, Leanne, Sarah and Manolis also managed to get over to meet them and it was a really lovely day.
Everyone got on, everyone was comfortable - complete strangers brought together by one disgusting disease - brought together by something you'd not wish onto your worst enemy but without it, I'd never have met them.

I don't know why I got cancer - but I do know that sometimes you are meant to meet some people in life. I feel I was supposed to meet Lisa and Tony.......They are life time friends - true friends and I'm so happy we finally met up :)
Thank you both for coming all that way just to check up on me - much luv to you both xx

Bloods, Drugs and 'no Side Effects'.......

2012-01-20T00:26:00.000Z

Me again :) I'm BACK just as I said I would be - lol......

So to recap on the last 10 days or so..

Monday, 9th - went down the the local hospital to get bloods done prior to the infusion of bisphosphonates the following day. They need to do your bloods first as they must check things like your calcium levels, kidney function and make sure that the white cells are behaving themselves beforehand.
Arrived just before 11am and found the LONGEST queue ever in the bloods department. So, I pulled the cancer card (something I never usually even think about doing).
First I asked the (bored looking) woman on reception roughly how long the wait was for bloods....she replied at least 1.5hrs probably 2hrs. I then quietly asked if there was any way for me to be fast tracked for two reasons, firstly because the cancer is in my spine and I find it really hard to sit in one position for that long - and secondly because I had a Palliative care nurse visiting me at home from Macmillan today and I really didn't want to miss her or waste her time, so could she ask if it would be possible to see me as quickly as possible?
Her reply was firstly to look at her fingernails in deep thought followed by a long sigh and then.....No.....

That was it...just 'No'.....I looked at Rab, he looked at me and we just shook our heads, walked away and sat and waited - in total for 1 hr and 58minutes. By the time I was seen I was irritable and in pain from sitting upright in one position on a hard plastic chair for so long. The bloods lady greets us with 'Hello, are you well?'.....I bit my tongue and said 'Not really, I'm in a lot of pain, the wait was ridiculous and I'd think you 'could' maybe make special arrangements for people who are really genuinely in pain' She just smiled and said nothing.
It just makes you feel so so cared for in this place!

Managed to catch my Palliative care nurse just as we arrived home, she was about to drive off having waited for just over half an hour for me. Apologised and explained and she agreed that it should be possible to help people in genuine need of assistance.

Anyway, her name is C, she's lovely and she'll be my guide on pain management now until the end.
She has wiped the slate clean with my original meds and we're doing a new regime which includes more morphine than before, but slow release so I only have to take it 12 hourly. I will still be using the Dicolfenac for the bone pain, plus paracetamol 6 hourly - paracetamol actually helps the Diclofenac work more efficiently apparently - don't say you learn nothing by reading my blog :-)) On top of that I still have my Oramorph in place (liquid morphine) for breakthrough pain which I can use 2 hourly if necessary.
I think the new med's help more than the co-codamol were doing but at the moment I'm on the lowest possible dose to see if I can manage there. If not, it will be increased gradually until we find the right dosage that removes most of the persistent pain. Morphine of course is highly addictive - this hardly matters in the scheme of things going on with me though.

We had a long chat about everything, end of life care plan, funeral arrangements, the boys (I cried...I ALWAYS bloody cry when someone wants to talk about the boys) Rab (cried some more) and just general stuff like who's who in my family and how everyone around me is coping, do we need any practical help etc. I bonded with her and she's really kind so I know she'll be doing her best for me.
She's also going to organise some complimentary therapies for me at Trinity Hospice shortly....remember my link if you've not donated and have a spare couple of quid knocking around :)

So, that was Monday.

Tuesday, 10th in the afternoon I was due to have my first infusion of bisphosphonates. I mistakenly thought I'd be getting some time with a Doctor beforehand to: discuss any concerns I had; make sure my bloods had been checked; ask any questions that I'd thought of; warn me of any side effects to watch for, that sort of thing......but no, it was a case of sit in the chair, nice nurse comes over and jabs a cannula into your arm, checks your date of birth, take two vials of blood first, then starts the infusion.
I'm sure she said something about my bloods being used for checking next time...and I didn't say anything but thought, not likely. I know my bloods need to be done AFTER the infusion, not beforehand. I know they need to be checked 24-48hrs before each infusion - there is no way they're going to use 'old' blood - surely?....Anyway, not a problem because I'll be dealing with that nearer the time.

During this first infusion I asked her 'What are the side effects of this drug?'....she replied 'None'.
Hmmm, that's definitely NOT what the manufacturers website says - so, me being me, asked some more questions. 'Are you sure, all drugs have side effects don't they?'.....She then said 'Usually you don't have side effects with this drug' - I then told her I'm NOT usual, I was removed from Chemo after just two days due to toxicity problems....she smiled and said 'You'll be fine, nothing to worry about' and wandered off. That's good then.......I'll be fine and I don't need to be informed of anything to watch out for!

Sarah was with me and we sat there for a while just chatting and finding things to laugh about, quietly because no-one in there makes any noise at all - it's quieter than a library building! Drip, drip, drip infusion all done after about half an hour - followed by a quick flush through (sterile water) and then we were free to leave after making the appointment for the next one in four weeks time...but no appointment for a prior blood test?
Hmmm, I'll be doing something about this nearer the time but it never ceases to amaze me how much I've had to educate myself on my treatments, how much I have to check and double check, how many times I have to chase things up that need doing. It's all getting a bit (lot) irritating now.

Tuesday evening I still had a strange taste in my mouth, but nothing untoward was happening.

I did increase my pain meds Tuesday night as the pain did feel slightly more intense than earlier - but I'd been out doing things, walking around, sitting around, being jabbed.... so that was probably the cause rather than any 'immediate' side effects :)

Going to break the rest of what's been happening down into other posts - or this one will end up just too long

Here's a couple of pictures that Sarah took whilst we were in the unit.....

In a calmer place.............:)

2012-01-07T23:53:00.000Z

I'm back.....calmer and back in control. Over the past 5 days I have experienced a wide range of emotions, despair, disappointment, rage and now calm. A quiet calm really and an overall acceptance of what will eventually happen.
I think that if I was religious I'd feel that maybe 'God' or someone was looking over my shoulder and calming me down - but I'm not religious in any way so I reckon I'm just a tough nut :)) Once I get the emotions sorted in my own head I can deal with whatever comes my way. That's me and how I do things and how I'll continue to do it......Pain though, that's a whole different ball game, dealing with the physical pain is much harder than sorting out the emotional pain....

So, my immediate aim now is to get some relief from this ongoing pain.

On Tuesday I have my first session of intravenous bisphosphonate and this may assist in relieving some of the draining, sickening pain in my bones. I will also have some bone cement put into my spine at some point over the next few weeks - again the aim is to reduce the pain and strengthen the bones. Neither will stop the cancer from spreading further, but it may help to make the spread slow down - because the bone will be tougher to 'eat' through.

Monday morning I need to get bloods done to make sure they can go ahead with the infusion on Tuesday.

On Monday afternoon I'm seeing a Macmillan nurse at home - she will be sent from Trinity Hospice (gentle reminder that all donations (no matter how small) are very gratefully received by them - link on the left if you'd like to help them, help me. Many many thanks to the many people who have already donated and helped me reach £600 currently raised)...
We will discuss pain management and other things. She asked me when we spoke if she could bring a Social Worker with her, for emotional support for me and the family, but I said no to this. I have an army of people around me who can give me emotional support both in real life and cyber life. I'd rather the Social Worker's time was spent on people who do not have the network that I have. Neither Rab or Dj want outside help at this point.

Then that's it for this week - just rest up for a few days after the treatment which can give me side effects such as

Flu type symptoms, (high temperature chills and muscle pain)
Drop in calcium levels
Red or sore eyes
Anaemia (symptoms include feeling very tired and breathless)
Headaches
Feeling nauseas and vomiting
Osteonecrosis - previously healthy bone tissue in the jaw becomes damaged and dies

and wait for this next one..........so funny......

INCREASED BONE PAIN !!! ............lol, good job I'm back in my calm place so I can find the humour in that one :)

On the other hand, maybe I'll be lucky and sail through this treatment with NO side effects - I'm long overdue a break here :)

I've decided to resign from acting in films, but I'll leave you with a famous actor's quote........
"I'll be back"!!!

Much luv and catch up soon xxXXxx

Starring role in a film now.........

2012-01-05T23:13:00.002Z

Yes, that's right.....I'm currently playing the lead role in a film - a science fiction film I think where time travel is a complete possibility.... either that or I'm playing the part of a woman who was involved in an accident of some type and suffered total and complete amnesia for 9 months!

I'll explain........Monday night I went to bed thinking that as much as cancer is pretty crap, and getting a terminal diagnosis is even crappier, at least I've got 18 months or so to sort everything out but by Tuesday morning I was sitting in my Oncologist office having a discussion about my bastard cancer, about how it has now decided to spread to my right hip (wasn't there in October but now is and is causing me intense pain) and he explained that what this now means is that my life is now limited to around 6 months - possibly 9 months, maximum.
Fuck that!........I lost 9 months by just going to bed one night - so since then I've decided to stay awake and stay out of bed. It's obviously not a safe place to go anymore - you end up being catapulted 9 months into the future and you don't remember a thing about it.....

That's it for now.......everyone who needed to know in advance of this post knows.... My boys are heartbroken but both are being brave and doing their best to cope with this shite.
I've cried tons over the past 2 days with various members of my family and friends and now I just have to get on with doing things that need to be done - update the will, write notes about where to find insurance stuff etc, plan my burial in advance, organise my retirement from work and attend the tons of medical appointments that are now stacked up for me - none of which will save or extend my life in any way.
My favourite saying is still 'Bastard cancer' and I doubt that will change...it appears to be the only certain thing left in my life now - that cancer was and is a total complete bastard!

I make no apologies for using this language - what I've said off here is far far worse. How can anyone look at their 12 yr old's face crumple whilst he bites his lip so hard to stop himself from breaking down in tears and not feel like swearing about this bastard cancer.....

More when I'm in a calmer mood I think :)

Much luv to all - oh and one last reminder, Trinity Hospice will now be supporting me with pain management and enabling me to stay at home with my family for as long as possible. The link is still there on the left hand side of my blog, if you feel that you've got a spare £2 or so you'll be directly helping them to help me.

Back soon with a more informed and less abusive update :) xxXxx

2012-01-04T00:02:00.001Z

This really says all that I want to say for now......

Fuck you cancer, you bastard!

'We Ruled Cancer'.... Christmas 2011.........

2012-01-03T00:59:00.000Z

Firstly, many thanks to Alice for the idea of the post title - it works perfectly :)

A few days before Christmas it finally hit me that Christmas was literally a few days away and I was NOT organised at all. I do tend to leave things until the last few weeks anyway, always, but this year I was down to the last few days then I motivated myself to get a few things done. Somehow, we pulled it off :)
Everyone had something to open, Dj had a small pile of presents to open, we had food in the house, crackers - and a turkey (thanks James!) and it all just fell into place.

Christmas day was really lovely.....Mum and Dad, Sarah and Manolis, James and Leanne plus Rab, Dj and me together for the day. Cancer was 'banned' from the house for the day, it was not discussed or mentioned (as per my wishes) and at no time did it manage to rule the house - WE ruled Cancer and it was banished to the back burner - Yay to us :)

I got some lovely presents, in fact I got everything I'd mentioned or asked for. This is a 'first' - usually I'd tell Rab I like a certain perfume (hint, hint) and I'd get something like a cookbook! LOL..this year I got exactly what I'd mentioned plus other stuff I hadn't asked for at all - but would have done if I'd thought about it. Also got other lovely presents from family and friends - including a really soft snuggly dressing gown from James and Leanne that has already had tons of use :)
James took Dj out shopping the weekend before Christmas to get presents for me and Rab and, with his big brothers help, he made some great choices - thank you James, for everything as always xxXxx

In the evening, my friends Jacqui and Pat came up and we all sat around eating and drinking until around just after midnight. Throughout the day I kept topping up my pain relief and kept things under control...and when not really under control, I just ignored it as much as I could. My brother Eddie also came up in the evening after spending the day with his two boys - so by Christmas night we were all together in one room - perfect end to the day :)

Boxing day is always a 'pyjama' day in my house. We tend to just chill out and do little, eat whatever we fancy and watch TV or go through Dj's presents with him. Terry and Lorna popped up around lunchtime with their lovely little boy, Owen. He's guaranteed to put a smile on your face, a real little character who finds the simple things 'fantastic' - bless :)
The rest of the day was spent doing little and I rested during the afternoon. I'd taken so many painkillers by this point that my body decided it was bedtime at 3pm! So I slept a while then we watched TV in the evening.

On the Wednesday evening, Jacqui and Pat invited us to their place along with Sarah and Manolis for food and drinks. We had a really nice evening with some lovely food - thank you Jacqui, for everything :)

On New Years Eve Rab cooked a lovely meal and Sarah and Manolis came over to us until around 11pm then they set off up town to see the London fireworks (which as usual were fantastic, Rab and I watched them at home on TV, warm and dry and no hassle getting home afterwards).
New Years day Mum and Dad came over for dinner and we just relaxed at home after stuffing ourselves full of Roast beef, yorkshire puddings and all the trimmings. We finished off with coffee and cakes after dinner and I'm sure I managed to put on another half a kilo :)

I don't make New Year's resolutions - simply because no-one ever keeps them. If I did, it would be to be back here this time next year still annoying you all - LOL :)

Now.........back to reality :(((........Hospital appointment with Oncology tomorrow morning to review recent scans that were done just before Christmas - then hospital appointment on Wednesday with colorectal team to review 'things'...
Have made some decisions about work which I'll cover in another post and after I've discussed them with the boss. Have made some other decisions too about things I want to/would like to do but this would be after the bone cementing takes place and IF it worked to relieve the pain a little. Again, I'll cover these more in future posts...

Catch up soon - and again, Happy New Year to all of you. Massive thanks for all the support over the past year, it's been so appreciated.
Also BIG THANKS to everyone that has donated to Trinity Hospice - thanks to Running Man (you know who you are) today I reached my target of £500....
I'll now up this to £1,000 over the next few days - so if you know of anyone looking to donate to a worthy cause please do point them in this direction. Every single pound makes a difference. Huge thanks from me and from Trinity Hospice who appreciate the support immensely.

(Mum took some photo's over Christmas which I'll add to this post tomorrow evening).

Happy New Year to all

2012-01-01T23:32:00.000Z

Just a quick post to wish you all a very Happy New Year.

Update to the blog, to tell you all about our Christmas, in a day or so - but for now just sending out New Year wishes to you all.

Much luv xxXxx

2011-12-20T00:16:00.002Z

Thanks to all those who've messaged me, either via the blog or Facebook or email or text to ask how things are going. I know I've needed to do an update for a while now but haven't been in the right frame of mind - or had enough relief from the pain, to do so.
Tonight I've set myself the task of bringing you all up to date.

Last Monday I met with my Oncologist, Dr L - who is the same Oncologist I had last year for my pre-op chemoradiation. I like him and trust him totally and feel confident with any decisions he makes on my behalf.

He told me he feels really genuinely sorry to be seeing me again and really hoped that the last time he saw me, back in January 2011, would have really been the last time he needed to.
We discussed the spinal mets and he said he's quite taken aback by this development and it was completely unexpected. Told him I agreed completely, it wasn't what I was expecting either!
The current plan is that he has arranged for new CT scans to take place (this Wednesday) on my spine, thoraxic area and also my left hip to check to see what's currently going on. After he's viewed these I'll be meeting with him again in early January to 'discuss developments'. I told him I'm still quite chemo resistant and he's fine with that - but we'll make final decisions in January once we both know exactly what's happening for sure.
He told me that in his opinion chemo could potentially possibly provide me with some extra 'weeks' but it would come at a price. This is all based on my severe reaction back in June 2010...so we're back to that decision about quality vs quantity and I've made it clear that quality is my goal. Extra time being slowly poisoned is still not really negotiable for me at the moment - BUT it will depend on what he says in January when we meet.
We had an open and honest chat and he leaned forward, looked me in the eye and said 'I'm really sorry that I can't fix you Carole, I just can't stop the cancer'..I told him I do know that this is the case and my only real interest is to sort out the pain and see what options are on the table that probably don't involve chemo.

Today I had a follow up appointment for palliative care and pain management. The lovely Dr P has emailed a couple of her colleagues on my behalf and asked about a spinal operation that involves placing a 'cement' type product into the spine to try to mend some of the damage. They will review my bone scans and see what they think. I'll let you know what their opinion is about this once they've got back to me/Dr P.
I discussed today with Dr P what my life expectancy could be now - she said it's so difficult with cancer because things can change literally overnight - however at this stage of things she'd suggest I have "long months and short years". She then said to be blunt in the region of between 9-18 months would be a good estimate at this stage.
I want to be around for Dj's 13th birthday, if possible, so that gives me hope that that might be achievable (if things don't change overnight) :)

The pain has been a pain....not much more to say about that. Still tweaking the med's around to see if we can find a balance that works for me. Next appointment in mid January.

I'm meeting with Dr L, Oncologist again on 3rd January - then have a colorectal appointment on 4th January.

For now, everything is going on the back burner because it's almost Christmas and I intend to have a lovely time with my family - enjoy the festivities and make any decisions after the holidays.

Many people are in my thoughts at this time of year - especially my special friends Rose and David, whose families will be spending their first Christmas without them.
Also special thoughts going out to my lovely friend Kev over in Western Australia who will be facing his first Christmas without his wonderful wife, Joan.

Catch up soon xXx

A frustrating week all round........

2011-12-03T21:58:00.001Z

I'm now two weeks on from the end of my palliative Radiotherapy. I think you'll remember that I told you that the best case scenario would be that 7-10 days on I'd be 'pain free' .....well, 14 days on I'm on middle ground.
The pain 'has' diminished slightly (and I do mean 'slightly').. at times but I still can't function without pain relief every 6 hrs. Yesterday was probably one of the best days so far and I felt quite optimistic that the Radio had kicked in, done it's job and killed the bastard tumour off to a point where it was no longer going to give me constant, persistent pain - but today I've been back on normal dose pain killers once again. Bollocks!
Over the past 10 days I've also developed a pain in my left hip that feels very very similar to the pain in my spine - double bollocks!

But being realistic, I guess I just have to be happy that I can cope with the pain and it might still reduce a little over the next week or so - hopefully.

Apart from that, lots has happened.
Had a follow up with palliative care for pain relief tweaking. Next appointment mid December to see how I'm getting on with that.

Also had a follow up appointment with the BC team on Wednesday. Felt really optimistic about this as they have been so so helpful to me since my nice colorectal nurse, L, referred me to them for support with the spinal mets. Sarah came with me for the appointment and I was so glad that she did because this time things really didn't go to plan.
Saw a different Doctor who was like an ice-maiden, cold, frosty and repetitive. She started our conversation by asking if I'd completed my Radiotherapy then said 'I don't know why you're here.....you don't have breast cancer'!
I was a little knocked off balance by this (because I KNOW I don't have breast cancer and so did the BC team) so replied that yes she was correct, however because of the spinal mets, my colorectal nurses had asked Mr R to look into my case and he'd said he wanted to take over my care for the mets - despite me not having BC.
She sat there stony faced and said 'Yes, but you don't have breast cancer and I don't know why you're here...why are you here today?'....
Told her she's the Doctor and she should know why they'd asked me to come back today...and then I started to cry because I could see that this was the time I was going to be told to clear off.
She then told me she'd met with Mr R that morning and he'd said he didn't want to see me in his department again.
More stuff was said - mainly by Sarah as I couldn't get my head together enough at this point to have a rational conversation and then we left, me still crying and Sarah furious (although she stayed completely polite and calm in the face of Ice-Maiden).
So, dismissed from the Breast care team and once again wondering where do I go from here. That was my Wednesday morning.
Then in the afternoon developed a really bad stomach upset which has lasted until today. Just about sorted it out now by eating only light meals and sticking to simple things like toast for a few days.

Thursday I received a letter from the Oncology dept at G hospital offering me an appointment BUT I'd said during the meeting with Ice-Maiden that I didn't want to go to 'that' hospital, I'd clearly said I wanted to go back to my original Oncology team at StT as I knew them, knew the way the dept worked and had got to know the staff there. She agreed at the time - then referred me to the one I'd specifically said I didn't want to go to. Cried some more - out of frustration really (and the cramps from the upset stomach didn't exactly help).

I'd also recently cancelled my out patients appointment on Mon, 28th Nov with the colorectal team because I'm having a staging CT scan on 19th Dec and it didn't make sense to meet with them before this took place. So I contacted the appointments dept and asked for a new appointment to take place after the scan on the 19th Dec....received that through the post on Friday - new date 28th MAY 2012! FFS......cried some more, again out of frustration more than anything.
Sat there thinking, been dismissed from one team, the other doesn't want to see me for 6 months, can't go where I want for Oncology, still got spinal pain, now developed hip pain and just felt that no-one gave a shit about me anymore :(

Then Friday afternoon received a telephone call from the lovely nurse at Beating Bowel Cancer (an amazing charity organisation). Spoke to the lovely Nurse L, who listened to all my moans and groans and gave me some really constructive advice and got me back on track with my next steps.
**see my note at the bottom of the page for other info about Beating Bowel Cancer............

Then later on Friday afternoon I got a telephone call from my nice colorectal nurse, L, who said she was a bit confused about a few things. She had thought that I had asked NOT to be seen any more by my original colorectal team as I was unhappy with my care. I informed her that was not the case at all, what I had said was that I was happy to stay with the BC team for the spinal mets as they have more experience in this particular area but I had not said I wanted to go elsewhere when dealing with the original colorectal issues, such as the ongoing lung questions etc.
We had a frank chat and I explained how frustrated I was feeling with everything that was going on around me at the moment. I did clarify that I wasn't unhappy with the care that she (L) and her colleague S (both colorectal nurses) had given me BUT I felt that the delay in referring me for a bone scan was wrong and that I'd felt at the time (back in June) that the surgeon should have taken me more seriously when I asked about the bone pain and told him I felt it could have been cancer related. I said I felt I should have been referred for a bone scan at that point, not sent away to see my GP about this.
She assured me that both she and S are on-board with me, willing to do the whole journey with me and will do whatever they both can to simplify things as much as possible.
She is now going to try to reorganise my Oncology appointment, get me seen again in the BC team (by a NICE doctor - not the Ice-Maiden) and also rearrange my 28th May appt to take place shortly after my latest scan in December. So all in all a constructive chat.

It's been a crap week to be honest - but I'm okay again now :)

** As mentioned above, I've recently had some great support from the lovely nurses at Beating Bowel Cancer. They are a charity organisation who assist anyone diagnosed with bowel/colon/rectal cancer including relatives etc..
My friend Alison's husband, Bob, is currently fundraising for this great charity. He's asking for sponsorship to grow his beard and all cash donated goes straight into the 'Beating Bowel Cancer' pot.
Personally I can't praise them enough - they are the most helpful, understanding and supportive group of people ever.
So, if you'd like to sponsor Bob to turn into a hairy man just in time for Christmas the link to his page is here....
http://www.justgiving.com/BobSelfeDecembeard

Much luv and catch up soon xxXxx

Trinity Hospice

2011-11-24T15:03:00.001Z

Some of you may remember that Trinity Hospice recently asked for votes so that they could be considered for the NatWest funding initiative. Winners would receive just over £6,000.

This post is to thank those that took the time to vote and give you the updated news that Trinity DID win and have been granted the additional funding of £6,275 towards their community nurses. The community nurses help people in the local community cope with terminal illness - either in their own homes or if this becomes too difficult in the Hospice itself.

It is a service that at some point in the future I will be depending upon, so by helping them you're helping me - in the long term :)

I am so grateful to those who took the time to vote and also to those who have and who continue to support this cause via the Just Giving link to the left of this blog.
Remember one less pack of cards or one less roll of wrapping paper = a small donation to the Hospice

Many thanks again xxXxx

Radiotherapy done .........

2011-11-20T23:00:00.001Z

All last week, Monday to Friday I had Radiotherapy daily. I have been warned that the side effects will probably increase for the next 7-10 days then hopefully ease off and take the pain along with it. The best case scenario will be no pain after this - middle ground will be some pain remains but is manageable with pain relief - worst scenario is that it does nothing to ease things.
Hopefully in about 10 days I'll be back here saying 'Wow! out of pain and feeling good' :)

Other news:

Went back to work on Tuesday last week and also managed to get in on Wednesday for a couple of hours. Sitting upright is bloody painful for long periods but I managed to get back for a few hours at least.
Planning on also getting into work this week - pain permitting.

Sarah, my little sister, is coming over on Saturday and I'm really looking forward to seeing her. I've not seen her since March when I was over there. I'm not sure how long she's staying over here at the moment but however long it is I'm really looking forward to spending some time with her and catching up properly.

Have now had a chat with Dj about the latest developments. He handled it really well, didn't cry just said he hates f*&$ing cancer and no, I didn't tell him off for swearing either! Bad mother eh :)

I told him because he asked about the amount of hospital appointments I've had recently and because he was already aware of the intense pain I was in every day recently. He knew I'd been off work again for the past two weeks and asked me at the end of last week what they were doing at the hospital about my back.
I told him that I was going to have 5 sessions of Radiotherapy to see if it could ease the pain....he seemed to just accept that and said he hoped it would help.

Around 5 minutes later he came back and said 'If you're having Radiotherapy does that mean the cancer is now in your back?'.....I told him that Yes, it was now in my spine and it was this that is causing the pain...He said again that he hoped it would help, then he stared me straight in the eyes and said 'This means you're terminal now then'........
I said what it means is that they can't cure the cancer now, but there are things they want to try - such as Radiotherapy and a drug that will help repair the bone damage...
He then said that if I was 'terminal' then that meant I'd die.......
I told him that Yes, it does mean that, eventually - eventually this cancer will 'get' me and yes, I will die BUT not today, I told him I'm not going to go to bed tonight to die (well, at least that's not the plan so far) but that eventually, in the future, they would have to say there wasn't anything left to try and THEN we can worry about terminal. He asked me to promise that when they say this I tell him and don't pretend things are okay...I agreed. He didn't cry but I could see that he was struggling not to :(
This was when he said he hated f*&$ing cancer and I didn't reprimand him for it. Like I said, bad mother but I'm the best he's got :)

Since then things have been normal here - he's still spending too long on his Xbox or PC and less time on homework than we'd like, but he's happy and showing no signs of being overly stressed at the moment. So, all is good here.

Rab's been brilliant - he's doing the vast majority of housework, working full time, shopping and never complaining about how much he now has to do. I do what I can, when I can but I've been accepting my limits at the moment.
The thought of spinal breakage really stresses me - I'm aware that I now run the risk of snapping something and don't even want to think about where that leaves me - so, I'm accepting that I can do less and Rab will do what needs doing.
Many times in the past I've read about partners who leave because they can't deal with the stress, the continuing illness, or the extra demands on them - many times I've thought how utterly selfish these people are and rarely do I remember how lucky I am - so today, it's about remembering how lucky I am to have Rab who tries to make things easier (and gets the brunt of my bad moods as thanks!)
I hope one day he reads my blog and realises how much I did appreciate him :)

Catch up soon xx

Next Steps on the long winding road.........

2011-11-13T00:37:00.001Z

After my spinal biopsy last week I was quite sore around the spot where they'd taken their samples from, in addition to the 'normal' daily pain in my spine. I'm sure now it's a different type of pain because I had two pains at the same time - the draining, constant dull ache in the spine from the mets PLUS the soreness around the area of the biopsy...however, now I'm back to just the one pain, the soreness at least has eased off.

Saw the palliative care team on Monday and had the pain med's tweaked around a bit. We are reviewing in two weeks to do the same again.

Wednesday I met with the Breast Care (BC) team. Saw a very nice Doctor who discussed the MRI results with me. They showed 'a mass around and covering T9 with further limited spread into T10. Bone is impacted along with vertebrae around that area - but at the moment no spinal compression'.
MDT meeting on Friday decided after reviewing MRI that the way forward is Radiotherapy - 5 sessions over a week (Mon - Fri) starting this coming Monday.
The purpose of Radiotherapy is to reduce the 'mass' as much as possible and repair the damaged bone in that area.
The biopsy results are not yet back from the lab - however she feels that it will show the origin as being 'rectal' rather than a new primary.

We discussed why Cyberknife isn't an option and she explained that it is due to cost reasons. She explained that it hasn't been taken off the table but has been delayed for now because as it's an expensive treatment they would have to apply to the Cancer Fund for funding - the Cancer Fund would then refuse saying that they hadn't tried normal Radiotherapy on that area yet.
They would then have to do this first then reapply...all this would take at least 6 weeks, during which time I'd be having no treatment.
Therefore the MDT decided to go for normal high dose Radiotherapy and if they don't get a good enough result they WILL apply for funding for CyberKnife
We also talked about neurosurgery - she confirmed that they do not want to risk it at this point. The 'mass' is larger than they'd want it to be for surgery purposes and therefore they wouldn't be able to guarantee a good result with a positive outcome. It's major surgery and after weighing it up they've decided it's off the table for now. I really didn't want spinal surgery anyway.

After the Radiotherapy, they are interested in using Bisphosphonates

IF these treatments work she feels they can buy me time - 'possibly even as much as a couple of years compared to the alternative of months'....Therefore, much now depends on the Radiotherapy initially - then the Bisphosphonates afterwards.
However, if the Radiotherapy didn't work I'm not sure where we go from there - therefore it HAS to work this time :) Simple eh :)

Had my Radiotherapy planning meeting on Thursday. Four new tatoo's - so now I have seven in total :) Brief chat about side effects, usual stuff.

So, have Radiotherapy every day next week - side effects may include extreme tiredness, nausea and vomiting but NO burns this time :) Pain may well increase during treatment and for a week or so afterwards then if it's worked, pain should reduce dramatically or even disappear for a time.

Following Monday I have a follow up with palliative care. Then a further appointment with BC team on 30th November.
I also have a colorectal check up appointment on 28th but will probably reschedule this - because I've had scans recently, they've all been checked and double checked, my next CT is on 19th Dec to check the lung question so it makes sense for me to see the colorectal team AFTER they've got these results and we've got something to talk about, rather than me just stopping by for a chat about things that are already being dealt with now.

I just want this ongoing pain to give me a break now. I'm totally fed up with it...........

Fundraising for Trinity Hospice

2011-11-07T23:03:00.001Z

I just wanted to say a quick thank you to all those who have donated to my chosen charity Trinity Hospice.

Every single pound donated gives me a reason to say Yeah F*&k you cancer......I'm now up to 387 F*&k you's so far....I've plenty of breath left to add on more :)

So, a reminder that if Christmas means more to you than just the manic shopping, gift buying, wrapping and cooking (and eating too of course) - would you consider buying maybe just one less pack of cards, or one less roll of wrapping paper, or one less stocking filler and instead donate £2 to Trinity Hospice?

Again, many thanks to all those who have donated - and here's hoping for many more F*&k you cancer opportunities.

xxXxx

Biopsy Day.......

2011-11-05T17:50:00.003Z

Spinal biopsy day was Thursday...it feels like lots happened in just a week :)

I wasn't looking forward to the biopsy, was quite scared to be honest, but I knew it had to be done so plucked up the courage and went on Thursday for this procedure.
Had a chat with the Doctor who would be doing this beforehand and although still apprehensive, I knew he'd get it right. I was given the option of either sedation or general anaesthetic - so chose the general. I told him there was no way I could do this under sedation as I remembered the whole conversations of the staff who did my colonoscopy - I recalled them planning their night out on the Friday because J was leaving the department and going to work up North...I really didn't fancy recalling anything to do with needles being poked into my spine - so took the cowards route and had a general.

The procedure took about an hour and I was then back in recovery. During my recovery period I developed a stinking headache that made me feel really sick - like an early stage migraine. This was because I was dehydrated and once I got back home and got some fluids in me, whilst resting in bed, it then went off and I managed to get up, eat some toast and peanut butter (yum) and had a cup of tea - then went back to bed until 10.30am next day. How can you sleep that long and STILL feel tired!

Had a phone conversation with one of the Breast care nurses on Friday afternoon. She told me that they'd had their weekly MDT and they'd discussed what they want to do. Firstly they've looked at the MRI I had done on Saturday to check that there was no risk of immediate spinal compression (it is this that causes problems such as bladder incontinence and paralysis of the lower limbs)...luckily it was felt that at the moment there is no immediate danger of this - however they've instructed the other hospital to contact me immediately with regard to palliative Radiotherapy sessions. She wasn't sure about how many or over which period of time but I'll sort that out with the Radiology team at the other hospital.
I asked if cyberknife had been considered as an alternative and she informed me that yes, they had investigated this option, it had been discussed with the head of the cyberknife team but was decided that I'm not suitable for this - they also felt the same about spinal surgery. I'm unsure as to exactly why at the moment but will be having a meeting with them hopefully next week.
So the reality now is that the option available to me is palliative Radiotherapy and possibly biophosphates (not sure of the exact spelling and right now, can't be bothered to google it LOL)...more will be revealed next week when I meet with them.
Best case scenario is that the Radiotherapy will reduce the tumour and stop it from growing for a while....worst case scenario is that Radiotherapy does nothing to the tumour. Time will tell but obviously hoping for the best case scenario right now.

Breast care nurse T, let me know that the pain may well increase for a short time during the Radiotherapy sessions but after a week or so the pain should subside dramatically. The purpose of Radiotherapy is two fold, to attempt to reduce the tumour by killing off as much of it as they can and to attempt to repair some of the bone damage that has been caused. I'm just hoping that it responds this time to Radiotherapy because it didn't last time. After my 18 sessions of Radiation last time there was very little difference made to the original tumour - so if it is from the same original tumour, it may be stubborn - on the other hand it may just completely die off and I'll be sitting here saying 'Amazing, all gone' :-))
Now THAT would be a nice post to write for sure :)

After my biopsy he warned me that I had to rest for at least a week - as much laying down in bed as possible - no lifting, no carrying, no excessive bending or stretching as after a biopsy on the spine there is a slight risk of bone breakage. So, I'm taking it really easy for the next week or so and doing as I'm told, resting a lot.

Apart from that I have an outpatients appointment with the palliative care team on Monday to discuss tweaking pain meds and such stuff.

Dj has gone to spend the weekend with his big brother and the lovely Leanne. They are taking him out somewhere for firework night, it's always been a tradition that they take him to the fireworks every year and I'm hoping that even when Dj is 30 and J 49 yrs old they will still get together every November 5th :)
Because J has taken him for the weekend I can take the daytime dose of tramadol because if I need to sleep I can - when he's here I don't want to be constantly sleeping so reduce the dosage, but that of course increases the pain somewhat.....catch 22 eh!

So, that's what's going on at the moment - I am okay, if I can get rid of this pain I'd be able to say 'I'm good'...strangely enough I'm the best weight I've been for years, my skin and hair are in great condition, I eat well and if I didn't have this pain I'd be able to just get on with doing things...living my life...and just 'doing'..
Big hope for no pain soon so I can do exactly that :)

My lovely sister, Sarah, is coming over at the end of the month and I'm really looking forward to that. I've not seen her since March when I was over in Rhodes so will be great to be able to properly catch up again. I've also not managed to catch up with mum or dad lately simply because I've not been able to do the train journey to them, mum broke her hip a short while back so she's only just started getting a bit more mobile - I'm hoping to be able to see them next week once I've sorted out my treatment days etc...I know my dad's feeling neglected :-))

Oh and for all those who know me in real life.....Dj doesn't yet know about the spinal mets...he (obviously) knows I've had problems with my back, he knows that I've had 'some fluid taken with a needle to see if they can work out what is causing the pain'...and that's ALL he knows at the moment. I wanted to wait until after Christmas to talk to him about what is going on - if possible - I also want to make sure I have all the facts first so that I can tell him what the plan is.

Catch up soon - much luv to all xxXxx

At last....some positive news :)

2011-10-31T09:39:00.000Z

I don't have Breast cancer :)

On Friday, I had my mammogram and appointment with the Breast care clinic. Met with a lovely consultant, Mr R, who I had a long chat with prior to the mammogram and asked him if it would be possible to get my results same day. He said that normally they wouldn't do this - however because he felt that I had more than enough to be dealing with he agreed that he would get the result for me that day.
After my mammogram (which if you've not had one before was uncomfortable but not painful in any way) I met with him again and he informed me that it was, as I'd expected, completely clear.
Therefore it appears that the tumour on my spine has indeed come from the original rectal tumour and has found itself a new home in my spine.

Mr R was the most lovely man and we had a chat about 'options' now. I told him I'd done some research myself on cyberknife treatment. I expected him to say this wouldn't be available to me but he actually said that as far as he's concerned 'all options are now on the table - including cyberknife'. He informed me that he wants to take my case on as his department deal more often with spinal mets than my current colorectal team.
Spinal mets in Rectal cancer are relatively rare - less than 4% of cases worldwide - therefore he feels that his team are better equipped to deal with this and has agreed to take me on, regardless of the absence of any breast tumours.
He feels I'm a bit of a puzzle and therefore interesting to him...it's not only unusual for spinal mets to develop from Rectal cancer, it's also highly unusual for this to happen so soon after my original surgery and without the appearance of mets to the liver first. Therefore as I'm unusual the 'NHS resources are now at my disposal '....:)
I really liked Mr R - felt confident with him and I know he will do his best to provide me with a quality of life.

We discussed what my priorities are and I explained that I'm fully aware of the seriousness of spinal mets, I accept this and my main priority is now removal of the pain.
He feels that he can achieve this - at least in the short term. We talked at length about a couple of options, cyberknife, radiotherapy, short term chemo or neurosurgery....Now, I admit I took a very deep breath at the thought of surgery on my spine BUT if it makes a difference to my quality of life and he feels that is the best option then this is the path I will have to follow - but I admit to being totally scared about spinal surgery!

He assured me that now I'm officially under his team, things will start to happen quickly.... He explained that things HAVE to happen quickly now because spinal compression can cause damage that absolutely cannot be reversed therefore it is essential that things now happen fast.
He also insisted that I could not leave his department on Friday without first seeing the Palliative care team so that they could start working on immediate pain relief. (I had previously been referred by my colorectal team but was waiting to hear from them). He contacted them and asked that they come down to his department and meet with me today as he felt that it is completely unacceptable to be in this much pain

So I waited and met with a lovely doctor, Dr D, from the Palliative care team who talked through the pain symptoms with me and tweaked various medications to give some immediate relief from the CONSTANT pain I'm now in. He also carried out some neurological tests to ensure that the reflexes were behaving as they would expect and that there was no sign of imminent damage being caused...he explained that if he was concerned about this I would have been admitted on Friday. However, so far things are 'okay'...
I've been warned about signs to look out for and instructed to get myself to A&E immediately should I notice any of them.

So, to relive the pain I'm now on 5 different types of medication - short term - whilst they make decisions on what to do. Mr R's team are meeting this Thursday to make decisions on the next step/s.
He feels that in the short term I am 'fixable'...in other words they can do stuff to reduce the tumour and relieve the pain. What they probably can't do is completely remove the tumour - but they can try to control it and therefore give me back some quality of pain free life for as long as......So for now, I'm concentrating on what they can do rather than what they can't do.

I got home just after 6pm after being at the hospital from 10am - so a very long, but extremely productive day.

By the time I arrived home there were three messages on my ansaphone asking if I could come in for an MRI on Monday...so true to his word, things are happening now 'urgently'...Then later on in the evening I received another phone call asking if I could come in for the MRI at 12.30 on Saturday instead!.

So on Saturday I had my 45 minute MRI to check the spine area again. Mr R wants to see how deeply into the bone the tumour has embedded itself and also wanted to check the vertebrae involved. The Radiologist informed me that I was back in on Thursday 'for a procedure' that Mr R has organised! I told her I wasn't yet aware of this....she smiled and said Mr R works fast, you'll be told next week.
She then asked if I wanted to know what I was booked for and then told me that it was for a spinal biopsy.... GULP...really scared now!

I've spent the weekend feeling really drugged up but definitely in less pain now. The pain med's are working but the result of this is that I'm dizzy constantly, feeling sick 24/7, and need to sleep much more than normal - however the pain is less than it was prior to Friday.
I'm meeting again with the Palliative care team on Monday next week to see what needs some more tweaking med's wise.
I'm hoping that as the med's get into my system I may feel less nausea - or at least it might not be ALL the time. Right now concentrating on anything beyond a few minutes is difficult, because I feel completely spaced out all the time therefore I've decided to take this week off work and get the pain med's sorted first. I'm hoping to be able to go back next week because if I'm working then things are 'normal'...and I want to stay 'normal' for as long as possible.

It's taken me two days to write this update...I've had to do bits and then go back to it later due to my lack of concentration and also needing to go back to sleep. But on a positive, at least I can now sleep without being in constant agony - and it's been MONTHS since I last managed to sleep without pain.

I feel very optimistic about Mr R and his team - so it's all good right now :).....still scared about a spinal biopsy though and even more scared at the thought of spinal surgery!

Keep things crossed for me eh? Much luv xxXxx

So.....what now?

2011-10-20T00:14:00.001+01:00

Yesterday when I got home from work there was a message on my ansaphone from my nice colorectal nurse L...she had tried to contact me to discuss the recent bone scan results.
Immediately I knew this was going to be dodgy news simply because if it was good news she would have emailed me rather than called...however, the voice of reason starts to think 'Maybe she just wants to offer advice regarding the pain' ..then the other voice starts hearing the conversation that is pending.

Anyway to cut a long story short, I got very little sleep - was up at 4am with a stinking headache and of course the now familiar pain in the back driving me to distraction. Then at around 9.30am this morning L called me and we discussed the scan.

The outcome is that I have bone metastases (spine T9 and T10) - probably from the original rectal tumour BUT she stressed that this is very very very unusual as there are no lymph nodes impacted anywhere in the body, joints are unaffected and although it's possible for rectal cancer to move to the spine, it's extremely unusual for it to go to the spinal region without going somewhere more common first.....
So, to make sure all bases are covered she is requesting an urgent mammogram just to check that there is no sign of Breast cancer.
L explained that bone mets (to the spine) are more common with BC rather than rectal cancer - the mammogram is therefore to make sure there definitely isn't a tumour in that area...The recent CT I had on the chest area didn't pick up anything in the breast area - but then again, it didn't pick up the spinal mets either - but the mammogram is precautionary more than anything.

Putting all that to one side, it changes very little. Bone metastases cannot be 'fixed', I'm no longer considered 'curable'.... but we discussed what we can do to regain some quality of life.
The short term plan is urgent mammogram and L is contacting the other hospital involved in my care to organise some Radiotherapy sessions to alleviate the pain I've been experiencing. My care team will be discussing me on Monday to decide on next steps.

As to the long term plan.......the simple answer right now is, I don't know. I do know that my long term survival statistics have now dropped dramatically - I also know that right now I'm still here and that life isn't infinite for any of us..

How do I feel? Pissed off with it all to be honest - but I DID expect this result.
I knew that the pain in my rib/shoulder area wasn't a 'normal' pain, it wasn't a run of the mill aches and pains type of pain so I knew it would either be bone mets or the other possibility I was looking at was damage from the Radiotherapy (*but that would have been more likely to have been joint issues rather than mid spinal column).
I did what I always do when faced with something and researched beforehand....spinal mets from rectal cancer only affect a tiny amount of people, in the region of around 4% or less - and that small amount of people who are affected by bone mets tend to become so after numerous tumours move into the liver/lungs/pelvic area first - so I was a little hopeful that despite my concerns it might turn out to be nothing serious.
No such luck eh :)

I don't believe in God but if I did, I'd definitely now believe he's got it in for me for some reason.....

Bastard cancer!

Catch up soon xx

Bone Scan........

2011-10-12T00:28:00.001+01:00

Done......

Today I had the much waited for, and needed, bone scan. Firstly they inject you with some nuclear material then you sit around and wait for about 3.5 hours for this to do it's work.
After that they take tons of pictures using this state of the art machine (thank you Philips) which will show if there are any 'hot-spots' in the bones.

Now I've just got to wait for the results - which the very nice Bone scan man said would be done 'asap' for me.

Fingers crossed for the best possible outcome :)

Bone scan man was very helpful and explained everything fully. He let me see the scan picture on the PC afterwards which was really interesting.
I stood staring at it, studying it for a while and he asked 'What are you thinking?'...I replied 'It's weird, I'm looking at future history....at some point in the future someone may dig up my bones and this is what they'll see...this is my mark on the world, this bunch of bones'......

Just to add, this picture above isn't REALLY me - this is just an example of what you see after a bone scan....:)

Much luv
xxXxx

Can you trust your Doctor?........

2011-10-09T00:29:00.000+01:00

This was the title of the Dispatches programme on Channel 4 this week 'Can you trust your Doctor?'..

Worth watching if you missed it - available here....... but I think you do have to be UK based to view

http://www.channel4.com/programmes/dispatches/4od

I found this programme interesting because it goes back to what I've talked about on previous occasions - taking responsibility for your own health, not just sitting and nodding if the Doctor appears not to be on-board or dismissive, not leaving the surgery with a prescription for painkillers instead of a referral for assistance...however in some cases on this programme people were left with no help at all.

'Anthony' went undercover to film one particular GP. This GP had been investigated in the past (2006) for failing to spot cancer...
'Anthony' presented with typical symptoms of bowel cancer, rectal bleeding, abdominal cramps, very bad constipation - he left the surgery with a prescription for laxatives and instructions from the GP to 'eat mangoes'...One month later Anthony goes back and informs the GP that the symptoms have not gone away - he then leaves with a prescription for stronger laxatives and instructions from the GP to 'eat green pears'....Two other doctor's that 'Anthony' presented to (different surgeries) immediately referred him for tests on his first visit to them.
GP's are informed of the 'typical' symptoms to watch out for with regard to colorectal cancers, it seems ridiculous that some are still not aware of the signs.

Another lady went to her GP 14 times after suffering severe breathlessness...she was diagnosed with 'asthma'. Sounds acceptable until you hear that this lady had no previous breathing issues and had breast cancer a few years prior to the breathing issues developing.
Fast forward 9 months and this lady then demands a scan/x-ray as she remains unhappy with the 'asthma' diagnosis. The GP then fails to report the findings to her. Eventually she does obtain the results which show 'secondary lung cancer'. She passed away some time afterwards.
The GMC (General Medical Council) asked the GP to 'amend and improve practices'....

Young lady, 22 yrs old, presented to her GP with a lump in the breast that she was unsure about. GP examined her, said it was nothing to worry about, that it was probably because she was taking the contraceptive pill and she was too young for it to be anything serious.
Six months later she returns to the GP who decides she doesn't even need to be examined because she was previously examined 6 months earlier - sent away with reassurances of 'nothing serious' once again - despite knowing of a history of breast cancer in her family.
This time, her mother insisted she get checked out and she attended elsewhere - outcome was breast cancer, a tumour on her spine and further spread to the liver....

This programme examined how doctor's that are failing patients have very little to worry about. We are taught in life that our actions have consequences but in the case of GP's that fail patients it appears there can sometimes be virtually no consequences.
A three year old child died after the doctor on call did not attend to him adequately - the coroner reported 'failure to provide basic medical attention was total and complete. There was a clear causal connection between this gross failure and Joseph's death'...
So, you'd expect he would be struck off the medical register? Unable to practice again after such a damning report from the coroner? ....Well, you'd be wrong - because the coroner failed to inform the GMC and the local Primary Care Trust (PCT) also failed to inform the GMC so his consequences were? ...None.......

However, it's worth mentioning that around 800,000 people visit their GP's daily and by far the vast majority of patients ARE happy and DO get good care. But, if you find yourself thinking 'I'm not sure' after a visit then take responsibility and ask to be referred somewhere where you will leave thinking 'I'm now sure'......

Side-effects of cancer treatment

2011-10-02T22:54:00.000+01:00

I was given this article earlier today by a friend (Thank You C).... who thought I might find it interesting...that was like the understatement of the year.

This is well worth a read - not as a 'dig' at GP's or anyone else, but to make us all aware of the fact that we MUST take responsibility for our own care - we must step up and complain loudly if things aren't right, we must accept that GP's do not know everything and therefore push and push for access to those who can help.

Dealing with cancer is hard enough, dealing with the after-effects of treatment is a double blow

GPs 'failing cancer patients' by not spotting side-effects of treatment | Society | The Guardian

In short this article covers:
25% of symptoms are missed by GP's who are simply not aware of the side-effects of cancer treatments.
Poor communication between hospitals and family doctors meant signs of side-effects went undetected and caused patients pain, misery and discomfort
250,000 who have survived cancer have had symptoms such as osteoporosis, heart disease and bowel trouble not picked up by the GP.
Currently GP's are not recording who has had Chemotherapy or Radiotherapy, partly because they don't receive enough information from hospitals but also because they don't realise why it's important for them to do that!
NCSI estimates that between 20-25% of those diagnosed with cancer later experience a consequence of their treatment which affects their physical or mental health or quality of life.
GP's will not necessarily be used to the long term side-effects of many cancer drugs, so sometimes those effects aren't picked up by the GP and primary care team
The quality of information given by hospitals to GP's varies and sometimes there is confusion about who is looking after the patient - and the patient can get lost in the cracks

Definitely needs to be read so that should you be unlucky enough to find yourself with symptoms then you will remember that GP's cannot possibly know everything and sometimes need to be guided by us.

Also, this website is definitely worth a look...full of interesting information and facts.

The National Cancer Survivorship Initiative home page « National Cancer Survivorship Initiative

The National Cancer Survivorship Initiative (NCSI) originated from the Cancer Reform Strategy (2007). The NCSI is a partnership between the Department of Health, Macmillan Cancer Support and is supported by NHS Improvement. The aim of the NCSI is, by 2012, to have taken the necessary steps to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

At the bottom of the NCSI page are some supplements you can download - the HSJ Survivorship supplement is definitely worth reading, particularly an article contained within that called 'Forward Planning' - but in all honesty there was plenty worth reading in the whole supplement and on the whole website too.

Catch up soon x

Bone Scan update........Friday PM.....

2011-09-30T21:53:00.000+01:00

As you know from the post below I got my CT scan results via email yesterday.

Since then a few emails have gone backwards and forwards to my nice colorectal nurse, L....

I mentioned to her that I'd appreciate them (colorectal dept) contacting my GP to advise on the bone/bone scan issue as he was waiting to hear from them and wanted advice on referring me first. I also mentioned to L that my Osteopath is now sure it's bone related and most definitely NOT muscle issues.

L emailed me back this morning and said GP could refer without their say so but if I wanted her to then she would ask the CT Radiographer to review my recent CT scan as sometimes bone changes do show up on CT'. She mentioned that although they'd not commented on anything they were concentrating on the left lung area - so she could ask them to review the scan just in-case.
So I decided that yes, I did want her to.
I also said that if the Radiographer was sure and the CT showed nothing untoward then I'd put the idea of a bone scan on the back burner for now and concentrate on my Osteopathy for a while. I said I didn't want any unnecessary scans but that I did really need definite answers - so if I could get this from the CT then this would obviously same time (and money)

Fast forward to this afternoon and L again emailed me and said Radiographer had got back to her after fully checking the CT and has seen nothing to raise concern HOWEVER he has stated he would fully support the decision to refer me for a bone scan so.... 'would you like me to go ahead and organise this for you Carole'........

Now, let me think about that for a minute.....Ummmm, YES! Yes, I think I would :)

Sorted :)

Yay to my Radiographer and also to L, my Colorectal nurse - and to Martin the Osteopath for confirming it's not muscle pain - and big Yay to me for continuing to be a persistent nuisance - lol :-))

Recent Scan results...

2011-09-30T08:42:00.000+01:00

No, not the BONE scan because people still have to discuss this! These are my CT results from the 19th of this month.

"the CT scan showed very little change but commented that the area on the lung we're following may be slightly more prominant. We asked our collegues in the lung team to review for us and they have suggested we repeat the CT scan in 3/12 as these changes are so slight and not conclusive"

So no real news, still 'inconclusive' and I'll be rescanned on 19th December. I still live in Limboland :)

I have replied to the email and asked if a PET scan would now be an appropriate next step....They did offer me an appointment with their lung team but as they've already said it's 'inconclusive' there doesn't seem much point in going down that route just now.
I've also asked about my outpatients appointment being put back to the 28th November and stressed that I am not at all happy about this. It appears that my colorectal nurse was not aware of the change in my appointment as she mentioned the original October date and the 'possibility' this may have to be altered. Seems I'm ahead of them with appointment news then!

Apart from that news, I had a repeat Osteopathy appointment on Wednesday. Since then I've not been comfortable at all. So that was short lived relief - lol.
My Osteopath is now sure that the problem is NOT muscle related, it's the bones in the rib area that are causing pain - so it could be Radiotherapy damage?
I'm seeing my GP on the 4th and will again ask about the bone scan. I've also asked my colorectal team to advise my GP accordingly (as he feels he needs their 'go-ahead' before he books me in for one).

Weather here is lovely and if I felt better I'd be doing some gardening - however as I have limited movement it seems futile to even try, so instead I'll just try to get some sun on my achy bones whilst it lasts.

Have a nice weekend everyone and if you're lucky enough to be in a sunny place, enjoy the last of the summer sunshine.

Catch up soon xx

Time is fast approaching........

2011-09-28T21:34:00.002+01:00

It's almost October and therefore the time is fast approaching when I'll be asking you all once again if you'll consider buying one less pack of Christmas cards, or one less roll of wrapping paper, or even one less box of Chocolate biscuits and instead considering donating the couple of pounds you save to Trinity Hospice (link on the left hand side of my blog)..........BUT.........It's not *that* time just yet, it's too early to be asking for Christmas donations - so I found another way you could help, if you wanted to.

It doesn't even cost a pound and will take just a few short moments from your day.

Please vote for Trinity Hospice in this NatWest initiative. If they get enough votes they'll be awarded £6,000...more on this link. All you have to do is register and then vote for them. You actually are allowed 3 votes so after you've voted for Trinity have a look and see if there's anything local to you that you'd also like to vote for.

For this one you DO have to reside in the UK...so my oversea's friends can't help but all you UK based ones can make a difference. Please give up two minutes of your time, register and vote for Trinity (just to make me happy if nothing else - lol)
I had over 600 page hits from the UK last week - if just a fraction of you take the time to register and vote it could make the difference between them gaining enough support to get this award.

Also, if any of you use Twitter, please would you consider spreading the word on there too (I don't 'do' Twitter) and your Facebook pages?

Have a read of what they do on this link below and I'm sure you'll see they are a worthy cause....

http://communityforce.natwest.com/project/2202

Thank you xx

Osteopathy saves the day?.......

2011-09-25T23:10:00.001+01:00

Okay, so I ignored medical advice and went ahead and booked an appointment with an Osteopath locally. I used the clinic that I used some years ago when Dj needed some work doing - they were good at the time and although their Osteopaths are now different people I knew their reputation was still sound.

So, got myself an appointment on Friday afternoon. Had a nice chat initially about my past history, explained that my GP felt it wouldn't be useful however there was no way I could continue with this ongoing pain without at least attempting to help myself in some way.
Martin, my Osteopath explained that if the pain was due to joint issues (displacement), muscle issues (strain or injury) then he could definitely make a difference however if it was due to cancer (secondary bone) then what he did would not make a jot of difference. He explained that he wanted me to understand this before we went ahead. Seemed sensible to me.
He also explained that because of the question mark around cancer, he would only do a very gentle form of Osteopathy as doing anything 'vigorous' could of course damage fragile bones.

He then got me to bend over in front of him, with my back to him and immediately said 'That tell's me plenty, you are completely unaligned, your hips, shoulders and spine need adjustment and you are not a quick fix but I think we can do something here'...
We discussed that during my operation (which was when the shoulder pain started, the following day) I was probably pulled around for hours, they are not exactly gentle when they do surgery on you and you can't let them know if something is uncomfortable because you're 'out of it' - so they do their stuff and you get pulled and yanked about...

Anyway I let him do his stuff - which 'feels' like he's actually doing nothing but of course he is. I know this from when Dj had his work done, at first you question what 'holding' someone's head or placing their hands under your ribs and moving their hands around slowly can actually do - but of course they are really doing much more than this.
I already know that this treatment can have amazing results, we saw the difference in Dj within two sessions so I was hopeful it would work on me also.
My session lasted 40 mins and when I left there I was (as expected) much more uncomfortable than when I arrived. Every single part of me felt stiff and sore - however the test would be over the following few days. If it was going to make any difference I would know then as bit by bit I'd start to feel better.

And I do! Yay! So much better that I was able to get out of bed on Saturday feeling stiff but not frozen, I managed to get out shopping to buy Dj new school shoes, then we went to see mum and dad for a couple of hours. We were out from 2pm til around 9pm and I coped well.
A few days before there was NO way I could have done this as standing even for a few minutes was just becoming way too painful.
Today I've managed to get out of bed stiff but again not in agony, and got through quite a bit of outstanding housework - there are still things I can't yet do but today there were things I COULD do - so big YAY to Osteopathy and the best news is that as it IS working the chances are that it's nothing to do with cancer because as Martin said 'It won't help at all if it's secondary cancer'

So, I'm not fixed and I accept I'm not a 'quick fix' but I'm probably fixable - good news I think.

At the end of this I'll be poor but not sore :) That's the current plan anyway :)

Catch up soon xx

This one's for you Angel........

2011-09-23T00:46:00.000+01:00

Hoping for your rainbow to surface ....'after every rainfall must come a rainbow'........

Angel is my blogging buddy and her blog can be found here:

http://todaywasntallaboutcancer.blogspot.com/2011/09/town-flat-rescue.html

About Angel:
I have cancer that cannot be cured and a big gap in my life where friends and family used to be. Inspired by the book Why Kindness is Good for You, my aim is to raise oxytocin levels primarily by sharing my thoughts on things that make me smile, but also when I’m sad to tell you why and give you the opportunity to give me a virtual hug!

Pop over and say Hi to Angel. After reading her blog tonight it's apparent she is in need of little lift and a lot of virtual hugs right now.

Scan Day.....

2011-09-20T22:35:00.000+01:00

Monday was scan day - rescan the lung/chest area to see what is (or hopefully isn't) happening there.

My appointment was 9am which means that I need to be up hours beforehand so that I can get mobile before I need to leave the house.
In the 'old' days I'd have been able to reach over, turn off my alarm get out of bed and do the stuff you need to do before leaving for the appointment...these days I need to find a way to turn over to even get to the alarm, then it takes me a further ten minutes to actually get out of bed followed by another half hour to 45 mins before I can get mobile enough to move around.
Attempting to do normal things, like bend down and pick up the cat bowl so that he can be fed is just not an option now for at least the first half hour. It seems that I completely stiffen up during the night and everything then takes time to register that it needs to move again. Even lifting the kettle to make a cup of tea causes me intense shooting pains throughout my back/rib area. I'm shuffling around like a 95 yr old...

Anyway, got to the appointment on time, got scanned. Told them I couldn't raise my left arm above my head like you're supposed to do for the scanning process - the Radiologist is lovely and said it really didn't matter, down by my side would be just fine.
I didn't mention my back problem to him at all and here's the odd thing....after my scan he removed the needle stuff from my arm then said 'Wait, take my arm so I can help you up..is your back very painful?'........Oh shit!.....then you start to think 'What did he see on the scan, how did he know about my back'..(but they can't tell you anything about the results) maybe he's just psychic eh :)

After the scan my back was a million times worse than it's ever been. I literally hobbled down the road and eventually got to work...every single step sent a shooting pain through my whole rib area, my head was still dodgy from the migraine the day before and truthfully I felt crap on Monday. Had a chat with H when I arrived at work and she suggested I went home and tried to relax to get rid of some of the pain. I slept during the afternoon sitting up in the chair.
Today it's been painful but not like Monday - today I've been able to work through the pain, take painkillers and clock-watch until home time..but then it doesn't help that it's 'home-time' because wherever I am, home, work, walking, sitting, standing, laying the pain is still there all the time now...(actually laying down is by far the worse pain).
I realised recently just how much I'd deteriorated, during the summer holidays I was able to walk around London with Shents and the kids for hours - we met up around 10am and I didn't get home until 7pm, we walked around for most of that time and I was fine, now I can't walk to work without pain and that's a 10 minute (well, it WAS taking me 10 minutes in the past, now it takes me 20 minutes) walk...

Okay, moan over :)..... just got to wait for the results now which I'll be asking for via email in two weeks rather than waiting 2+ months.

Going to investigate an Osteopath tomorrow to see if that might help.

Sometimes you feel like SCREAMING!

2011-09-18T22:22:00.000+01:00

Update from my GP as discussed in my last post..........

On Friday I finally managed to get hold of my GP and get an update - except there was no update. He said his email hadn't been responded to as yet so he was unable to tell me anything more and that he'd ring me on 7th October when he came back from holiday.
Oh cool.......yes, great, I'll just 'wait' then shall I? FFS!

So, keeping my cool I said 'What about this bone pain? I can't get a proper nights sleep, it's bothering me to stand/sit/walk/lie down, what shall I do until 7th October, I think I do need a bone scan'........he replied that he knows that I do need one, that I do need answers about this ongoing pain in the bones BUT he needs the hospital to say that I need a bone scan so that he can organise one....Pah! Back to square one then.
He then said that instead of ringing me on the 7th, come in to see him on the 4th October instead.
Ummmm........Thanks, have a nice holiday then.....

Arrggghhhhhhhhhhhh!

Anyway, moving on - tomorrow I've got a CT scan for the question mark on the left lung issue. They are rescanning me to see if the 'too small to call' spots have grown/stayed the same or best case scenario completely disappeared. I'll then email them in 2 weeks and ask for the results because I'm not waiting until 28th November to find out the answer. (28th November is when they've moved my next monitoring appointment to)....

Today I've had a horrible migraine - woke up with it around 5.30am and took some painkillers then straight back to bed. Been in and out of bed all day and it's finally cleared off about 7pm this evening. Nice way to spend a Sunday :(

Yesterday I got up and my pain in the rib area was much much less than it has been so I started to wonder if maybe it IS a muscle related problem...then today when I woke up the pain was back with a vengeance so that little bit of relief didn't last long.
I know my GP said not to see an Osteopath but I'm thinking I might......just thinking about it at the moment..... because I feel I need to do something - something other than completely overdose myself on bloody painkillers all the time.

Catch up soon xx

GP appointment - Friday, 9th September 2011

2011-09-11T12:21:00.000+01:00

As previously discussed in my last post I managed to get myself an appointment with the GP on Friday afternoon.

I explained that my list of issues was growing longer by the week and that I also still hadn't received the letter from the hospital team after my outpatients visit there in July. He had now received it and printed me off a copy.
So we sat and went through it together - not that there was much in it to actually go through!

I pointed out a number of things that I remain unhappy with (in this particular letter and with regard to my after-care)...first off it states in the letter 'completed Chemoradiation treatment in July 2010'......
........Chemo was stopped after just a few days and Radiotherapy was stopped after 18 sessions due to excessive burns and skin damage...NO mention of any of this and as far as I'm concerned that is important information for my GP to be made aware of.
Letter also goes on to say 'good response to neo-adjuvant RCT' which again was not what the surgeon told me back in September. He actually said 'minimal response - the Radiotherapy did not destroy the tumour and it is virtually the same size as pre-treatment'...

Then it mentions that Carole 'is concerned about her ongoing tiredness and weight loss'.......
No I'm not...I AM concerned about the overall fatigue I still experience at times but at no time did I say I was concerned about my weight and I've definitely NOT lost weight - I'm back to my pre-surgery weight which is where I've been all of my adult life.

The letter then gives two completely inaccurate dates for CT scan and MRI scan (both in August)...I informed the GP these were both wrong, did not take place and were never planned to take place.
I showed him my letter for my next CT scan (in September) then we discussed that my outpatient appointment had been moved to November - he was not happy with this decision and will be raising with the hospital team.

He was also concerned about the decision to rescan the pelvic area after Christmas, which will be 6 months after they noticed 'inflammation' in the original tumour site....again he is going to ask for clarification on that decision. He felt that if something had raised concern in that area a rescan should take place after 3 months - as is happening in the lung issue. I said I was definitely unsure that leaving it for 6 months was wise as if it was the worse case scenario, we are giving half a year for new growth to take place.

My letter ends with 'patient declined adjuvant chemotherapy due to significant toxicities with neo-adjuvant'...which is exactly what I'm pointing out to the GP - how could I have completed in July 2010 when in the same letter they point out the toxicity problems caused....

At no point in this letter have they mentioned the bone issues I've been experiencing, no mention of either the shoulder or rib area despite me raising it with the surgeon.
Also no mention of the rectal wound that still hasn't healed, no mention of my concerns that my breathing never did return to normal after my op, no blood test results reported to him.

The letter sent to my GP makes me sound like a completely healthy person who has complained of feeling tired and being skinny !!!
Oh wouldn't that be so bloody nice just to be 'tired' and 'thin'......

My GP is writing to them on Monday (email) and raising questions about my care plan and also asking about the bone issue - he is happy to send me for a bone scan but wants them to say it is advisable first (I don't know why - and to be frank, I don't much care, I just want to find out what is causing this ongoing pain).
I asked if I could go ahead and book a couple of osteopathic appointments whilst I'm waiting for him (GP) to get back to me - he said 'No, absolutely not - we need to wait and see what the scan shows first'...I asked him what his thoughts are and he said 'We have to consider all possibilities, including the notion of secondaries'.....My thoughts exactly - thank you GP :)

My GP is going to ring me Friday morning with an update of all issues raised and tell me what the plan is for a scan on the bones.

So in the meantime I'm taking over the counter painkillers at night, just to try to take the edge off it so I can get some sleep in. Update once I know more..

Going to do a separate post later on about other things going on in my life - unconnected to cancer things :)

Sometimes you have to tell it like it is.........

2011-09-09T00:16:00.001+01:00

Okay, been a while since I've done a really honest update on me....I've scratched the surface, ignored things over the summer and said 'Yes, I'm fine thanks' so now it's probably time for an honest update.

Over the past few months I've been waiting to 'improve' - before my surgery they said in three months I'd be back to fighting fit and wondering what all the fuss had been about :) If only.........

I'm now 10 months post surgery and my list of 'issues' seems to get longer each week/month.
Apart from the fact that the rectal wound still hasn't fully healed - and probably won't now - the ongoing ache in the original tumour area is a real question mark. I know they said 'inflammation in the area that could be due to treatment' but seriously, I'm 14 months post Radiotherapy now and 10 months post surgery why would there still be 'inflammation' there? Puzzles me for sure.

It's not a noticeable problem until I sit upright for long periods, like when I'm at work sitting in one position for a long time. It's a dull draining ache just around the tail-bone of my spine and previously I could ease it by walking around and stretching but now that's not so easy.
This is because the rib pain/back pain has increased and now walking, stretching, bending, sitting and (most of all) lying down, are all really painful - sigh........The shoulder issue is a nagging ache but as long as I move the arm slowly and do not overstretch it, it's not a huge problem as such - the back pain is more limiting now. Once I get into bed at night it's impossible to turn over without waking because the pain is intense - and getting mobile in the mornings is taking longer as each week passes. When I first get out of bed I'm like a 90 yr old woman shuffling around and struggling to do basic things, such as bend down to pick up the cat bowl so that he can be fed or going downstairs to let him out and each step on each stair sends jolts right through my whole spine - the only way I can describe it is like electric shocks going through the whole body as the foot takes the weight, the spine reacts....
So.......am going to try again tomorrow to get an appointment with my GP to see what can be sorted out.

Another thing that recently pissed me off was I told you all back in July that I'd been moved to 'closer monitoring' due to the currently 'too small to call lung spots'....because of them they moved my monitoring from 6 monthly moderate monitoring to 3 monthly close monitoring. Okay, that all 'sounds' good, yes?...

I was last seen mid June and scanned around the 3rd week of June so my next CT scan is booked for 3rd week in September - all good so far.........

My next consultation with them, to report the results of the scan and 'check me' was sent and is towards the end of October - Soooo, I get scanned then wait 6 weeks (!) for results on potentially serious issues with the lung - in fact, let's use proper English here rather than medical 'chat - potential serious issues with the lungs = possible tumours on a vein around the left lung area - ...

I wasn't particularly happy with the 6 week wait after the scan - but it gets worse, 2 weeks ago they then write and say my October appointment is now cancelled and my new appointment is end of November - so, I'm having a scan 19th September then (supposedly) waiting more than 2 months for the results and THIS is 'close monitoring' ? ...............I was due to be seen again in December anyway under moderate monitoring (ie: no issues on scans, bloods all good, everything seems clear so see you in 6 months = moderate monitoring)
Being seen in the last week of November does not say 'close monitoring' to me....

So guess what this means? .........Yes, I have to become an official nuisance all over again, I have to email my nice colorectal nurses and insist that my scan results are reported to me via email rather than waiting for 2+ months, I have to feel and behave like a nuisance again to get any answers - as if things just aren't hard enough some days :(

I read a report on-line the other night (you know how I like to 'know' things - lol)....the report was about a study they've been doing with MRI tests pre-surgery on rectal cancer. To cut it short, the idea was to see if MRI could reliably predict outcome and life expectancy depending on the effect that Chemoradiation had on the original rectal tumour.
Seems that my 50/50 chance of surviving for 5+ years has now been slashed to around a 27% chance of survival.........LOL, serves me right for wanting to know too much, eh :) ....Anyway, all that means is there is now something else I need to prove them wrong on :)

On another note, I read a different report which stated that over 50% of rectal cancer patients die within a year of diagnosis....Up yours! I'm still here......16 months post diagnosis and counting :-)))

Catch up soon
xx

Happy Birthday to my Youngest Son :)

2011-09-01T00:23:00.001+01:00

Today was Dj's 12th birthday - we asked him what he'd like to do on his special day and his reply was 'just spend it with Nan & Grandad and keep it quiet' - so that was what we did.

He was pleased with his presents, mainly books and Xbox games from us - although Rab did get him his BB gun that he'd been virtually begging for. I was against the idea but it is only small plastic pellets and does look far less realistic than it appeared on-line.
He loves shooting things (not people - lol, just plastic bottles, tin cans, targets etc) and has a huge collection of Nerf guns, catapults, sling-shot, potato gun, cap gun....sigh.... so although I don't like the whole gun thing I was democratically outvoted on this one...Not to worry I generally do win, so occasionally it's right that I'm over-ruled and outvoted :) And he's happy.

Apart from that he received gift vouchers from Nan & Grandad, Sarah & Louise (thank you all) and also a set of books from Nan & Grandad...lovely T-shirt and hoody top from his brother & Leanne plus they've given him an IOU for a trip to Thorpe Park (Theme park with rollercoasters etc) as they are away at the moment...Jacqui got him a lovely set for his WWII collection which included a replica Identity Card and Rations book...My Mum's friend sent him cash...and he has other bits on their way at a later date.

So the answer to 'What did he get?' is, probably too much as usual - but he doesn't get (expensive) presents at times other than Christmas and Birthdays so I figure it's okay to 'spoil' him twice a year - plus a very large portion of his presents is made up of reading material and I think you simply CAN'T spend 'too much' on books. His love of reading is well worth the cost in my opinion.

He had a small cake and I found a 'sparkler' in the drawer that I knew he'd be happy to light whilst we sang Happy Birthday to him - he twirled it around and this is how it came out in the photograph....

On Saturday he's going to spend the day with his best mate, A...they are going to have an 'Xbox Halo day' apparently..(he's absolutely mad on anything 'Halo') then the following Saturday we are taking him and four of his friends out for pizza and maybe cinema afterwards.

I asked him tonight what was the best part of his birthday and he said 'I'm not going to lie, it was the presents' ........LOL!

So all in all, a good day :)

Summer's almost over :(

2011-08-30T20:19:00.002+01:00

Well, I've been off work since the 3rd week in July for the summer holidays - and it's been great.

Late nights and late mornings, no stress - no shouts of:

'Where IS your blazer?'....

'WHY didn't you do your bag last night?'....

'What do you mean you don't know where xyx is?'....

'You said you had NO homework yesterday when I asked'....

Just nice relaxed late mornings and catching up with programmes we'd Sky+'d to watch at a later date....Dj has the same sense of humour as me so I tend to set the Sky box to record comedy stuff that Rab doesn't like, then we watch it together whilst Rab's at work.

Today we sat around for a few hours watching 'Mock the Week' (political satire programme) which we both really like - it's doing laid back things like this that make the summer break so relaxing for me.

The time has flown past though, it feels like only last week or so that I was saying 'See you in September then' - and now I'll be back at work this Thursday.

So, I've relaxed and successfully ignored 'c' as much as possible...

I've ignored the nagging pain in my shoulder and the agonising one in my back under my ribs as much as possible...

I've ignored the fact that I can be in bed for 10+ hours and still feel tired when I get up (mind you, it doesn't help that I'm awake so often during the night with the stupid pain in the rib area and shoulder every time I turn over)...

I've refused to acknowledge the dull ache in the area of the original tumour....(well, I've acknowledged it in my head, got up and moved around to ease it off but not given it any public acknowledgement or excessive publicity).....

I'm successfully ignoring the fact that my breathing never did return to normal after the op..this is apparently 'not unusual' but feels pretty unusual to me :)

I've put to the back of my mind (mostly) that my next scan in September (think it's the 19th) is pretty crucial in answering the question about the lung area 'too small to call' spots...

I've done okay really, all things considered...and for that I'm glad that 'c' didn't dominate the whole summer break the way it managed to do last year.

Tomorrow is Dj's birthday - I will do a separate post on that one.....he's so excited and optimistic about what he may (or may not - lol) be getting in the way of presents. It's nice to see because as you get older you forget about that 'excited, optimistic' feeling that you get as a kid. Let's hope it's a happy memorable day for him.

Today he said 'You've had cancer since I've been in double figures'....he's right, he was 10 when I was diagnosed and now he'll be 12...I just hope that his lasting memories of me will not be 'my mum had cancer all through my childhood'....

So tomorrow's about making some memories that involve good stuff :-)

Catch up soon x

Thanks Cancer :)

2011-08-24T16:30:00.013+01:00

I 'met' Shents last year on a Cancer forum (Cancer Chat - which is connected to Cancer Research UK) and we developed a cyber friendship via this forum which then developed into much more. We are both part of a gang of five who got together in the cyber world and built good friendships, communicating via the forum and email..... The five are Shents, Tony, Rose, David and me....sadly David and Rose are no longer with us and our plans of getting all of us together didn't materialise :(

On Saturday Shents and I finally got around to getting together in London for the day - along with her two totally gorgeous children (a 10 yr old and 7 yr old) plus Dj and we all spent the day getting to know each other and exploring London (in the pissing rain - lol) !

Those of you who know me well will know that I'm not good at meeting new people - but this didn't seem to apply to Shents as I already felt we knew each other pretty well. I had this idea of what she'd be like (in real life rather than cyber life) and it was spot on - she is the most lovely lady, warm, funny, kind and I just know that we'll be friends for life now.

The children all got on really well, Dj and the 10 yr old spent the day chatting non stop about 'things' (when I asked what they'd talked about this was the answer 'things, just everything really') .

Her 7 yr old daughter is a gem, the kind of little girl anyone would be proud to call theirs - she's beautiful, bright, funny and confident. The 10 yr old is also a blogger and I've followed his blog for a while now so felt I 'knew' him already - he's a totally lovely lad, handsome, amusing, intelligent, mischievous and again a total credit to his mum (and dad of course) :)

We spent the morning in the Princess Diana memorial park in Kensington Gardens then moved on to Knightsbridge to get some lunch.

Then the weather decided to let us down and the skies opened up on us for a few hours :( None of us had rain jackets or umbrellas because the weather reports had said 'dry, sunny and warm all day' for London ........mental note: do NOT trust the BBC weather reports in future......

Anyway, after sheltering in the doorway of M&S food store for a while we jumped into a black cab and headed for Trafalgar Square to take refuge in an art gallery. Our cab driver seemed to forget we were actually in the cab for a while and this had us all in fits of giggles when he suddenly snapped out of his trance and realised we were all there....

After the Art gallery we headed out into the Square and managed to take some quick photo's - despite the rain we had some fun there....

Then we decided to head off for a coffee and cakes where we all managed to dry off for a while. After that we hit the shops where bits and pieces were purchased to remind the children of their trip to London that day.

Before we knew it, it was time for their train back to Suffolk (where they were spending some time before going back up North later in the week).....the day flew past and it felt like as soon as they'd arrived it was time to say goodbye again. Lots of hugs, promises to meet up again really soon (hopefully next time in Matlock with another one of our cyber buddies) and then headed back home - tired but happy.

Dj said 'I had a really nice day today' and that simple sentence sums it up perfectly. I really enjoyed meeting them all and it was a really nice day :)

Thank you Shents for your lovely company, lots of laughter and fun, and for making it possible for us to finally get together - and thank you cancer for bringing us together. Without you entering my life I would never have met Shents and for that I take my hat off to you...

Shents has a blog about her journey with Breast cancer called 'Keep yer hair on' (in my blog list on the left)....she rightly points out that despite it being a dreadful period she would never have found the people who've walked this journey with her, had it not been for cancer...

It's not often we have the opportunity to say 'Thank you Cancer' but for me, this is the perfect reason.

So today, no 'F&*k you' cancer statements...... just a simple 'Thank you' will suffice :)

The Churchill Experience.......

2011-08-19T00:58:00.013+01:00

On Wednesday I finally managed to prise Dj away from his PC ...(he's currently engrossed in an on-line game that he's been playing since the holidays started)...

Rab had a day off work so we decided to take my Mum, Dad and Dj to the Churchill War Experience Exhibition in Central London.

I knew Dj would enjoy this as WWII is one of his 'things' (things he finds interesting to the point of obsession) ...here are some pictures taken whilst we were there.

I hadn't realised that looting was a problem during WWII - people who took shelter in the underground shelters often returned to find their possessions had been stolen by looters! I actually think that's a lot worse than the looting that's taken place recently. During a war you'd expect people to be pulling together not robbing each other :(

Mum and Dj in the dressing up section - they have a variety of hats and uniforms that kids can try on

Dad and Dj....

Model of Churchill at his desk during the war years....

Evacuee's during WWII

After we'd finished in the exhibition we walked along by the River Thames between London Bridge and Tower Bridge and had a coffee...in the background here is HMS Belfast which is permanently moored on the Thames now...

As we walked under one of the bridges along the river front this sign below was on a door - Dj started to laugh and said 'When I was younger I used to think that sign meant that if you were in this area you could get stabbed'...

LOL! I do wonder about this boy sometimes y'know :-)

So we all went out, it didn't rain this time, forgot about 'c' and just got on with things for another day of our holiday.

Coming back home on the underground a lady got on the train, she was in her early 30's, with a walking stick and she had no hair plus was very thin and looked completely tired (chemo'd) out ...Dj looked across at me and just for a split second I saw a fleeting look of sadness cross his face.

He smiled at the lady and she smiled back and then we got off the the train - he immediately said 'Can I have a hug?' and that's when you know that even when you're trying really hard (all of us) to just ignore it, it's still there in my head, in his head, in all our heads.....damn cancer...

One month today until the next scan................sigh..................but in the meantime I'm still on holiday :)

On a lighter note.........

2011-08-15T14:21:00.005+01:00

In my previous post on rioting and looting there are lots of pictures....dramatic pictures of fires, damage, unrest.....

This one is the only one that's so far made me smile....

I've since been given the website address for lots more pics just like this (thank you Sue)...if you need a smile too then have a peek through - the address is in the comments section below

Un...bloody...believable.............!

2011-08-13T22:09:00.002+01:00

Following on from my post last night about the riots....

This government.... who right now should be listening to our Police, showing them respect and actually talking about other ways to fund the cuts instead of via our Police service.... this government has today appointed an 'advisor' to give them tips on how to handle the riots on our streets and how to take a zero tolerance approach.

So, you're thinking - "what's wrong with that?" Nothing except that he's appointed a 63 yr old American called Bill Bratton to tell him how to sort out this mess.

We HAVE people here that can tell Cameron how to sort out this bloody mess, but it comes at a price......

We need our Police service to be left alone financially and cancel the 20% cut backs,
We need our Police to be issued with proper riot gear,
We need our Police service to be fully supported by this government not ignored and bypassed.
We need our Police to know that if they need to 'robustly' deal with someone we will not be asking on the news the next day 'Were the Police too heavy handed last night' ....they need to know that they will not face disciplinary action for robustly dealing with rioters - or even idle spectators who really shouldn't be there in the first place anyway.
We don't need Robocop from the US to deal with our kids - we just need OUR Police to be given the resources and back up to take action with full support, from both superior officers and the government.

After all the plans to slash their pensions, freeze their salaries and put a stop to overtime payments they are now ignoring people who have worked our streets for years and bringing in someone from outside the UK.

I'm seriously shocked by this decision - mind you, it's not the first crap decision that Cameron has made (just think 'News of the World ex editor')...

Bill Bratton has already made a short statement so far he's commented that we need 'more minority officers' and we must 'focus on calming racial tensions'........Piss off mate, this isn't about racial tensions, it's not a race war...and anyway, with the current 20% cuts in place we don't have the MONEY for MORE Police officers, black, white or flippin purple ones.

Police high up in the service are understood to be really really insulted by this decision and I totally understand why.

Their officers stood there for hours over recent days whilst youths threw bottles, stones, fences, metal bars and hours of insults at them....they've retained their dignity whilst the government threw a different type of crap at them and made changes to their salaries, overtime and pensions....and now they are being ignored and sidelined when we should be saying to them 'What do you actually need to ensure the streets are kept safe, how do we regain proper control in the long term?'...

How much more can we really expect them to take before we see mass resignations.....

Sigh...

What the hell happened in London?....

2011-08-12T21:39:00.011+01:00

That was the question that many of you who emailed me asked.....What the hell is going on in London....what's the cause.....how did this happen.....etc.

For those of you outside the UK the background was as follows....Thursday, 4th August the Police shot a guy in North London. He died at the scene...

They were working with 'Operation Trident' which is a specialist group which was set up by the Met Police in London to deal solely with 'black on black crime'...in other words, they deal with black people (mainly young men) who either kill or want to kill other black (mainly young men) people.

After the shooting it was handed over for investigation to the IPCC (these are the people who independently investigate ANY shooting by the Police - not only by Operation Trident)...

Once it has been referred to the IPCC the Police are no longer able to comment for legal reasons.

The IPCC released a statement saying that the Police had shot this man after they had been fired upon and that they were investigating the incident and would report answers once their investigation had taken place.

The family of the man who was shot by police marched (with 100 of their family/friends) on the Saturday following the shooting to the Police station to demand 'answers'...

The police did not come out to give them those answers - so the friends and family staged a noisy but peaceful protest outside for a number of hours.

This protest was then hi-jacked by other young people who arrived after dark and then they took the protest to another level.

A bus was set on fire, buildings were set alight, shops were damaged and then looted. It took until the early hours to bring things under control.

Over the course of the following few evenings other areas in London then experienced large groups of several hundreds (mainly) youths rioting on the streets, burning and looting, various different areas at the same time.... Most of them who were asked by the media did not mention the death of the man during the shooting as a reason, most commented that they wanted 'stuff' from the shops 'free stuff' and they were there intending on taking it.

Others wanted to hurl abuse and items at Police officers citing their reasons as 'Police harassment' 'been stopped and searched too many times' - others wanted to 'teach the rich a lesson' - so they burnt down people's homes and small businesses that had taken years to build up and NONE of these people were 'rich'.

They were ordinary people who lost stuff whilst others just helped themselves to 'free stuff'. Of course, bigger businesses also lost stuff, large department stores had their windows smashed in and people helped themselves, large electrical chains also lost many many thousands of pounds worth of goods, a large SONY distribution centre was burnt to ashes after the looters helped themselves to what they wanted, a furniture business that had been there for almost 150 years was burnt to the ground. Sports shops and mobile phone shops were completely cleaned out of goods....

The police received 43,000 calls on Monday night and had 6,000 officers on duty. People have said 'Where were the Police?' but it doesn't take the brain of Britain to work out that they can't possibly be all over the place at the same time!

Looting attacks were organised by Blackberry messenger and twitter making it impossible for the Police to stay on top of a constantly changing situation....

So, put as simply as I can - that's what happened in London.

During this period, people lost their businesses, homes and possessions. Five people lost their lives during the unrest...one person was shot in a car in the Croydon area, three young men were killed in a hit and run incident whilst they were protecting their local community, one elderly man of 68 yrs was attacked and left with severe head injuries after attempting to put out a fire that rioters had started...he died yesterday after being on a life support machine for the past few days.

Police in London have spent the last few days knocking in people's doors and carting off those who thought they may have got away with it on the night....cctv has provided the Police with hours of useful footage and they have been busy publishing photo's and asking for the help of the public in identifying the people who took part. Some parents recognised their own children on the TV and duly handed them over to the Police....

The recent scenes of devastation were shocking to all decent people, very upsetting and disturbing.

Photo's of events in London during the riots....

After two nights of rioting in London, other areas in the UK also kicked off - namely Manchester, Liverpool, Nottingham, Wolverhampton to name just a few. These are all large cities in England and all had one thing in common, the youth wanted and the youth helped themselves....

However, I have to point out that they weren't ALL teenagers/youths, some were older and had jobs (responsible jobs too)

So when people say it's because the young have been left with no jobs, no future and no hope in some cases that could well be true - we do have young people who feel forgotten about, young people who have seen the bankers rewarding themselves after bringing our country and other countries to their knees recently, MP's who have robbed us and simply apologised for their 'mistakes in accounting', young people who have heard the MP's say they can no longer get their EMA - which has meant they fall out of the education system...(EMA is a small grant paid to young people from low income families to assist with the financial side of attending college) but during the looting other types of people also took part for example a 31 yr old teaching assistant, a trainee nurse, an athlete who was supposed to be a role model for young people for the 2012 Olympics, a model....these are not 'people who have no hope' they are people who simply took advantage of the opportunity to get something for free.

I believe the main reason for the riots and looting was, put simply...... 'because we could'..........

The MP's have said all the looters are simply criminals who took part in mindless violence and will 'face the full force of the law'......I seriously doubt that we have enough prison places for them all to 'face the full force of the law' and if we also locked up the corrupt MP's and Bankers as well then there definitely wouldn't be enough space in prisons.......

Meanwhile the Police had to deal with all this mess...111 officers sustained injuries, some serious. 5 police dogs were injured during the riots too.

The MP's who robbed us during the 'expenses scandals' a while back are now planning serious financial cut-backs to the Police service. They have agreed changes to salaries, pensions and overtime for Police officers meanwhile making sure they (the MP's) will still be well looked after and receive their huge pensions/salaries and no doubt expenses for whatever they can (legally?) claim for...

So the long and short of this is, some of our inner city youth are seriously pissed off because some of them feel forgotten about - they see corruption being rewarded at high levels and even they know this is wrong...

Our Police are (patronisingly) told they are 'brilliant, brave and effective' by the same MP's who have agreed severe cuts to their salaries/pensions and overtime.

They don't have the right to strike (it's illegal for a Police officer to take strike action) so they have to just accept their lot and continue to willingly face up to the angry youth who are pissed off with everyone and everything.

Meanwhile MP's sit and talk crap, listen to no-one, and go back to their huge family homes and eat caviar and drink champagne and will no doubt give themselves a round of applause for coming home early from their (way too long) summer break and 'sorting out the mess'.....

Just as long as they realise it's not over - nothing is solved - and they better hope the Police DO continue to willingly deal with this crap - or what then?

Lack of updates, murder in my garden, holidays and whatever...

2011-08-11T23:50:00.016+01:00

I've not updated for ages now (as so many people have contacted me and pointed out)...

I've not updated because, well because ....ummm because....... I just didn't feel like it.

I ran out of things to say for a while, I wanted a holiday from cancer and all the things associated with it - just for a while I wanted to forget that it matters and I wanted to concentrate on other things...
So, that was what I did.

However, am back now and doing an update...

Firstly my garden - my lovely tomato plants and courgette plant were murdered! Yes, poisoned by someone.

At first Rab thought that it was maybe just co-incidental, maybe the feed I'd used, maybe the weather but I knew it wasn't. Once we dug the roots up he then agreed with me - they had been poisoned...(bleach has been the strongest suspect because of the condition of the central roots)
My plants went from healthy to dead literally overnight...
Healthy tomato plant....

The following day.......

Healthy courgette plant...

Then the following day......

I was SO upset about it at the time. Really disappointed.....I launched a murder inquiry and narrowed it down to one particular suspect - but then remembered something else too, so my suspect list is two people, both neighbours.

I considered kidnap and torture to get them to confess (I AM joking of course!) but then decided to just ignore it and grow some more next year..so that's the plan at the moment.

The rest of my beds are still doing well. My rose bush is thriving, I have a few little Pepper tree's growing happily, three of which have Pepper's growing on them now, all my mint and other herbs are doing well and the flowering plants are now due to flower in the next week or so.

I'll do better next year with the tomatoes and courgettes and might even do some strawberries too :)

I'm keeping on top of the weeding, no small task - and have today started on the front gardens - which are a mass of weeds, stinging nettles and blackberry bushes all overgrown to a silly level. I started today and it'll take probably at least a week to get it all under some type of control. I say a week because I do only what I can, when I can. That's my current project anyway.

I'm on holiday from work until the 1st September and we've been having lazy 'wake up when you like mornings' and late nights.

Dj has been awake most nights really late reading and then not getting up until at least 11am.
I can remember a few years ago when he was up EVERY day by 6am, full of beans and raring to go...how things change as they grow :)
However, no complaints from me as I've always preferred to have lazy laid back mornings once we're off school.

Last week Rab took a week off work and we took my Mum and Dad plus Dj's friend Dan to London Zoo.

We decided to go on the Thursday...bloody hell, what a mistake that was really...the weather on Wednesday was so nice and had been for the previous week or so then Thursday morning turned into torrential downpour time...

It was absolutely POURING down with rain when we got up (tickets already purchased online, non refundable, non transferable - must remember not to do that again)...We delayed for an hour then decided to just go and get on with it.

It did stop raining around 1.30pm whilst we were having lunch so the afternoon was fine walking around but quite a few of the animals had gone into hiding after the excessive rain during the morning. However the boys seemed to really enjoy themselves and Mum and Dad said they did too - so in the end it turned out alright.

Dj took these great pictures below whilst we were there..
They have the 'butterfly house' which is a tent that they keep at tropical temperatures inside and the butterflies fly freely around you - that was really nice.
The zoo lady inside seemed really impressed with the boys who bombarded her with (sensible and intelligent) questions about the lives of butterflies and moths.

These are some of Dj's favourite pictures...worker ants...click on the picture to see the larger version. He found them fascinating and spent ages watching them and taking pictures :)

One of my favourite cats, the Serval below

Like most typical 11/12 year old boys, they found this highly amusing when the Meercat's decided to mate right in front of them....

and to finish up I'll show you this one - just because I think the colours are great

So, apart from all that.... zoo's, gardening etc....I'm still full of aches particularly in the left shoulder and right rib area - which has also spread to more of my central back/spine now as well.
Getting out of bed in the morning and getting mobile is taking longer and longer, it seems that my bones stiffen up during the night and it's really hard to move around for the first half hour or so......

During the night I'm woken every time I move position but the only option is strong painkillers which I really don't want to get into taking regularly until I'm sure of what's going on.
The hospital still haven't written to my GP about the bone referral and my GP won't/can't refer me without that letter.
All they can offer me in the meantime is physiotherapy which I'd rather not do until I've had the scan/x-ray on bones and had a chat to specialist bone man.

I still have the pressure pain when sitting in one position for too long - this is in the original tumour site....

The rectal surgery wound still hasn't healed any further and may or may not now. It's not a problem really I suppose because it's dry and not likely to get infected - just would have been better if it had healed up the way it was supposed to.... But what the hell eh...just have to put up with it for now :)

So just battling on, ignoring things and just trying to enjoy being at home with Dj doing 'stuff' that doesn't relate to bloody cancer....

I'll tell you all about the London riots in another post! :-)

Much luv xxxx

Carole Arab is fundraising for Trinity Hospice

2011-07-19T21:48:00.000+01:00

Carole Arab is fundraising for Trinity Hospice

Many thanks for the donations everyone - I'm up to 108% of my target now....if anyone was thinking of donating at any point in the future I'm perfectly happy to keep beating what I'd hoped to raise.
In other words, it ain't over :-)

Djamel is going to organise his sponsored walk for when he returns to school in September, I'm currently selling raffle tickets...Now I'm going to see if I can turn that 108% into 200%

Big thanks to everyone who donated so far...I know that Trinity Hospice are very grateful and I am too :-)

My address is 'Limbo land' .............:-)

2011-07-14T09:14:00.003+01:00

Thanks to everyone that has either phoned me, text me, emailed me, messaged me on here or other places or simply been thinking about me...all that positive stuff flying around must do some good eh :-)

I had my MRI on Saturday and then my meeting with my Consultant/surgeon on Monday. The outcome from the CT scan was that there is a question mark around an area on the left lung BUT it's 'too small to call' at this time. There are changes there - however it may be something or it may be nothing.
Plan is to re-scan in 3 months to see if there's any growth...so my lung area has now moved to 3 monthly CT scan monitoring and we are going to take a 'wait and see' approach. I've already received my appointment for this on September 19th....

My MRI results were then reported the following day, Tuesday.....there is an area of soft tissue around the original tumour site that has raised concern/interest BUT it's too early to tell if it's inflammation from the Radiotherapy burns OR if it's new tumour activity.
Plan here is to rescan with MRI in 6 months to check and see what's happening and again 'wait and see' approach.

'My name is Carole and I live at number 3/6 WaitandSee, Limbo-land'.........:-))

I had a bit of a moan (ok, quite a BIG moan actually!) at work on Tuesday afternoon (thanks Hazel for listening and for the good sensible advice), came home & kicked a few boxes around, felt sorry for myself for a few hours - then decided to say 'F*ck it..what will be, will be'...
I've done what I needed to do to get rid of this damn thing and if it insists on coming back then I'll deal with that when I need to.

Right now I'm going to just get on with things and try to forget about what 'could' be happening until my next scan/s.

Consultant feels that my shoulder & rib pain is not caused by anything tumour related so quite probably bone damage caused by Radiotherapy - possibly a type of osteo-arthritis from RT treatment.
He's writing to my GP to inform them that I need to see a bone specialist now to see what we can do...he has said however that RT damage cannot be reversed so it may be a case of learning to manage the pain.

Okay that's it - back to my gardening now :-)

Much luv to all
xxxx

Rain, rain and more rain........

2011-07-07T23:29:00.009+01:00

That's what we've had today, tons and tons of rain...but I'm not actually complaining because it saved me from continually going up and down stairs filling my watering can to stop my plants all drying out.

Where we live there is a communal garden at the back which no-one uses - this is because over the years it's been left to grow into a complete overgrown mess. Once it started getting out of control no-one then wanted the responsibility of sorting it out...so this year I decided it would become 'my' garden and I would tidy it and grow stuff out there.

When I started a few months ago, this was just a small part of what initially faced me.....

Completely overgrown, full of weeds and tons of work.

It took me ages but bit by bit I cleared each of the raised flower beds out - pulling and cutting out the weeds one by one, chopping back the blackberry bushes that had completely overtaken the whole area.

Rab then helped me by digging over the earth before we started to put out herbs etc in pots..it has been a long job, it's not over yet and I can only do work out there when I feel up to it - which isn't always - but now this is what the raised beds are looking like - I have coriander, mint, beetroot, rosemary, thyme, sage and some flowers growing in here now....slightly tidier compared to the first photograph :)

My tomato plants, (in grow bags) that are doing so well on the frame that Rab built for them ....

Every one of my five tomato plants has suddenly developed tiny tomatoes or has the flowers coming out daily in new spots, which will then become tomatoes...

I'm well pleased so far (and you're probably thinking 'So what, it's just tomatoes...lol') but I'm happy because what was wasted space is now being used and best of all, other people have noticed, commented and are starting to show an interest.

My aim is to get more people involved for next year.

This is my courgette plant which Jacqui got for me a few weeks ago. It seems to really love the spot I placed it in and has really taken off over these last few weeks...

I've also got spuds growing in a bag, radish, lavender in pots and a couple of sunflowers...It's not yet perfect - and probably never will be perfect - but I'm happy that it's making progress.

Dizzie's a lot happier out there too now - he rarely comes inside during the day now, unless he's hungry :)

So, that's why I don't mind a day of rain, rain and more rain

Results ....still partial so far....

2011-07-04T17:46:00.005+01:00

I got my email this afternoon as promised by my colorectal nurse.

Not got too much to say this evening apart from:

The multi disciplinary team have decided that they now need to do an MRI of the pelvic region of my body.
The colorectal nurse has today started the ball rolling with this and I should get an appointment within the next few days.
She will then be organising an appointment for me to go back into clinic to meet with my surgeon once they have collected all results together.

Watch this space :-)

* * Added Tues, 5th July......

* *

Just had a call from the hospital - I'm booked in for an MRI this Saturday afternoon (9th July)

** Added Wednesday, 6th July....

* * Hospital confirmed I have an appointment with my original surgeon on Monday, 11th July to 'review scan and discuss progress'

Results.....partially anyway......

2011-07-03T16:57:00.002+01:00

I was going to do an update tomorrow but seeing as how so many of you have now emailed me over the past few days and asked questions, I'll tell you what I know so far....

I eventually emailed the nurse on Wednesday and asked if she could let me know the results for both the bloods taken on the 13th and the CT scan done on the 20th.

I told her this was because my shoulder is driving me insane and if the scan is clear then I need to organise physio or whatever to try to relieve it (plus the overall joint pain and this ongoing naggy ache/pain under my ribs on the right hand side is increasing daily now).....

She then got back to me on Friday and said 'Bloods are fine but CT needs to go to MDT (big team meeting) on Monday morning and I can't report the result to you until after we've had the meeting'

So - bloods are fine and the scan I'll let you know about once I know - which should be sometime tomorrow afternoon.

Fingers crossed! :-)

Sorry seems to be the hardest word...???

2011-06-25T22:12:00.005+01:00

Sometimes I find it so easy to put a particular post together - the words come without me even thinking about it too much simply because it's all 'there' in my head and just waiting to be typed out and thrown out into cyber space.....

Other posts I find so much harder - and this is one of them.

Entitled 'Sorry seems to be the hardest word?'....but that's wrong. For me the hardest words are finding how to say 'goodbye' to people who have become good friends, people who've walked the cancer walk with us until they've run out of road ahead.

Thursday, 23rd June our lovely friend Rose passed away. Diagnosed with breast cancer in February 2007 she had suffered numerous chemo's (7 in total I believe), a masectomy, Radiotherapy, Stutent....she suffered hair loss, weight loss, appetite loss, painful hands and feet, extreme tiredness, breathing issues - but never ever lost her love of life.

She was determined to stay around for as long as possible so that she could see her three beautiful grandchildren grow up. Harry, Eleri and Annabel were three major reasons for Rose to keep trying - and she did exactly that.

Rose was an active member of Cancer Chat forum where she would spend hours assuring other people, calming them and finding ways to put their fears to rest - all this despite going through hell herself some days and she never once complained. She was always just grateful for one more day to spend with her lovely family.

Rose found humour when others found despair - one of her classic lines was talking about her appearance after a bout of chemo....'I had hoped to look like Sinead O'Connor but looked more like Matt Lucas from Little Britain'......:-)...

Another comment she made was that she'd gone to the GP surgery and found herself surrounded by ill, coughing and sneezing people. She was worried because she'd been told not to be around 'germs' but found "I couldn't actually hold my breath for 20 full minutes" ......LOL Rose...we will miss you so much.....

So for me, the hardest word is not 'Sorry' it's 'Goodbye'......Rose you were honestly one in a million and I've found it very hard to write this post saying goodbye to you....all I can say in response to your last email to me earlier this week is 'Yes I will, I promise... and luv you back loads too'

Sleep tight dear friend you will be so so missed by so many people...

Sending love & sincere condolences to Rose's family Ricky, Debbie, Christopher and her three beautiful grandchildren....

Happy Father's Day

2011-06-19T01:12:00.004+01:00

Hope you ALL 'have a nice day'......:-)

Scantastic :-)

2011-06-17T23:19:00.003+01:00

I got my scan date after my meeting this Monday...the appointment arrived yesterday in the post - 8am Monday, 20th....

That was quick eh - nice one Nursey! :-)

Dj arrived back from Germany tonight...he's had 'the best time ever'. Full of excitement about all the things they've done, mountain walking, water park, phantasia theme park, exploring the local area, meeting Germans, disco (which was 'boring' apparently - but Dj doesn't really 'do' disco's...)

The best news ever for me was that the travel meds we gave him this time really do seem to have worked. He managed to get from the UK at 9pm travelled through the whole night by coach and ferry and arrived in Germany around 11.00am the next morning after driving through France, Belgium and Germany and didn't throw up once.
Now, those of you who've had the pleasure of travelling with Dj in the past will know what a massive achievement this is...normally he can't do more than 15 minutes in a moving vehicle without being ill, repeatedly...So, at last we've found something that works for him - YAY :-)

He organised his bag really well too - I'm impressed that he thought to separate his dirty stuff from his unworn stuff...and I'm pleased to see my little boy is becoming a young man.
He's now gone to bed, totally exhausted and the last thing he asked as I left the room was "Can I put my Xbox on tomorrow?"....
Yep, Dj's home and life is back to normal once again

:-)

Appointment 13th June

2011-06-13T22:13:00.002+01:00

As you all know, today was my first check up at the hospital since surgery took place back in November.

Today I met with one of the colorectal nurses and we had a long, useful, constructive chat.

Doctor came in and checked the wound over - said it's being 'slow' to heal but that they do have other patients whose rectal wounds are still unhealed years after surgery...it's a tricky place to heal, especially if there was any Radiotherapy damage caused during the treatment process :-(

Then told the colorectal nurse all about my ever growing list of complaints, intense shoulder pain, achy pain in right side of rib, joint pains on the left hand side of my body, rectal wound that won't heal, general overall tiredness, pressure pain in the original tumour site.

We decided that the next steps need to be blood tests (done today) and CT scan (being organised to take place within the next two weeks).
After that, if the CT scan is clear she will either ring or email me and refer me back to the GP to sort out the joint problems with intensive physiotherapy (these pains 'could' be down to Radiotherapy, if so Physio may or may not help).

If the CT is not clear, she will ring me or email me to go back into clinic to meet with her again to talk about next steps.

She did say that I'd have to be 'very very very unlucky to get any problems with recurrence this early on, it would be much more likely to be a recurrence issue if we were about 2-3 years down the line'....I found myself thinking 'Yeah, and I can think of at least 6 people who've had recurrence issues within a year of initial treatment'

So, it's now down to whether or not I'm 'very very very unlucky or not' really.....

If the CT scan is clear, she's booked me a follow up appointment in October to see how things are going.

Catch up soon x

Reflections.........

2011-06-08T21:30:00.002+01:00

It's been a funny ol' week really - funny strange not hahaha funny (although there have been some haha moments - thanks Hazel/Christine)

I felt really tired this week again but knew I would have felt tired if I was doing 3 hours a day or 6 hours a day at work - it's an 'overall tired', not caused by working or anything - just a general tiredness that hasn't really left me since the operation...I admit that I've started to get frustrated with it all now.

Felt quite 'down' this week but couldn't put my finger on exactly what it was at the root of it - then tonight realised it's 7 months tomorrow that I had my op, 7 months ago when they told me 'in three months you'll be recovered and feeling well again' (yeah! right!)...

Just for the record, the wound still hasn't fully healed and my shoulder is still bloody agonising. My breathing never did return to normal after the surgery and I swear some days I feel worse than I did before - however, I'm also aware of the fact that had I NOT had the surgery, I'd be on the last few months of my life right now...so it's all about putting it into perspective and weighing it all up I guess.
Whichever way this ends up going, the surgery will have, at least, prolonged my life and given me the chance to, at least, attempt to be free of this cancer...and who knows, maybe they DID get it all..Yes, who knows? Not me yet - which is why sometimes I think it all gets to me and I end up having these 'down' weeks.

It's also one year ago this week that my Chemoradiation started - the most painful part of all this treatment was (for me) the pre-surgery Chemoradiation treatment.
I spent my 50th birthday having Radiotherapy and crying. I'd always said I'd do something special and memorable on my 50th (just didn't think it would be full on cancer treatment - lol)

This year it's my 51st - the plan was to celebrate and make up for 'missing' my 50th but in all honesty I'm too damn tired to even think about celebrating, too worn out to think about anything beyond the current day. And this is why I'm frustrated, I'm supposed to be feeling better each day (?)..I'm supposed to be 'on the mend'(?) so why then do I feel stuck in limbo still?

Part of this is because I've had no contact with anyone from my colorectal team since December - since my stitches were removed they've forgotten all about me (well, that's how it feels anyway).
I have this 'check up' appt on Monday morning - although I have no tests booked at all - I'm not really sure how you check someone post cancer without any tests of any kind?
Suggestions on the back of a stamp I think......

Friday, my actual birthday, I'm meeting up with Lou for a nice lunch. James & Leanne will pop over during the evening and I already have a little pile of cards waiting to be opened - so that's all nice stuff to look forward to.
Dj is off to Germany on Sunday (School Journey for 5 days) and he's really excited about it - maybe Rab & me will manage to get out for an evening (if either of us has the energy):-)

Other news is that I've had my chat with the boss and decided to stick with the 6 hours a day, 3 days a week for this term. We will then review this just before the summer holidays and make a final decision about permanent hours then.
I've been very lucky to have excellent support from my employer's during this - some other people I've had contact with have been treated really badly during their absence from their work whilst having treatment, many people have commented that their employer's have made it as difficult as possible for them in order to try to get them to resign their post.
Mine have been the opposite - they paid me as long as they could and have made it as easy as possible for me to return. I'm very grateful for that level of support....

Still want to win the lottery and give up work completely though :-))

Catch up soon xx

'Yes, I'm fine thanks'......

2011-05-27T11:33:00.003+01:00

Reason for title to be explained later on in this post.......

I've been back at work now and managed to get through the first half term. This week I did 5 hours per day x 3 days. At the end of week meeting with my office manager (and friend) it was decided that when I return after the half term break I'll be doing 10am to 4pm (6 hours daily) - we've also discussed that 6 hrs is the maximum that I can now do and I'll be thinking hard over the break about permanently reducing my hours.

For the first time ever I now really understand 'Work Life Balance'.

So, been back to work but how am I coping with work?
It's a two sided coin, it's good to be back with the girls and have a laugh about normal stuff during the day (we don't discuss cancer at all)...by the same token it's uncomfortable sitting upright for long periods - the ache in the tumour site has not eased off at all, my left shoulder is another continual ache (and has been since the day after my op - but no-one knows why)...so, as much as it's good to be working again it IS still hard - but I'm doing it and making progress.

I have my appointment on 13th June with the colorectal team - don't expect to find out anything much at all and know I'm going to have to insist on more than a chat but that's okay, I'll deal with all that on 13th.

People stop me and ask 'How are you doing now?'...and I reply 'Yes, I'm fine thanks' because let's face it, most people really really don't want to know how I'm feeling - they just want to hear that 'I'm fine thanks'.

But how am I really feeling?........I'm still waiting for that day when I wake up and feel well - that's how I'm feeling.

Catch up soon

Special Day Today........:-)

2011-05-15T11:43:00.014+01:00

Today is the birth day of my eldest son, James.

Those of you who have followed my blog along will remember that whilst I was in hospital recovering James took over the blog and kept everyone updated. Despite his own worries he managed to keep that smile on his face and convince everyone around him that all in the garden was rosy.

That is very much in keeping with James' personality. He's always been a smiley, happy, content and loving boy (now he's a man of course - but he'll always be my boy)

31 years ago today I gave birth to this little scrap of a thing and remember looking down at the cot and thinking 'Oh God! What have I done, how can I bring up a child on my own with no money, no job, no backup' (his Dad had decided he didn't want children after I found out I was having him)...I think at that point most people expected me to fail.

But I've never really been a quitter - somehow we got through it all together. I grew up WITH James ...in fact, I grew up rapidly overnight then continued to do my growing up with him.

James was always conscious of the fact that we didn't have much money in the early days - he never asked for the things that his friends all had, refused even to have an ice-cream in the park when he was a little boy until he'd asked 'how much does it cost mummy?'

Birthdays and Christmas were special times when I always made sure he got something really special, something I knew he'd had his eye on but would never have asked for. He always appreciated even the smallest of things.

In short, my boy has always been one in a million - we survived the odds together and I look at him now - married to the most beautiful girl, a home owner, good job with a future and feel nothing but admiration and total love for him.

Have a fantastic day James :-)

From this little scrap below

To this gorgeous man.....

Happy Birthday to my first born, very special, son James xxxx

Good Luck Shents.......

2011-05-14T00:08:00.002+01:00

This is to say

GOOD LUCK to Shents and her team who are doing the Moonwalk in London this weekend.

It's still not too late to sponsor her if you'd like to...the link to her blog is on the left hand side of mine.

26 miles in your undies Shents in London Spring weather is no 'walk in the park'....LOL, sorry couldn't resist that one.

They start out around midnight from Hyde Park in London and walk 26 miles overnight throught the streets of London....even if you don't want to sponsor her, please send out positive thoughts to keep them going.

xxxx

Back at work.......

2011-05-10T23:43:00.002+01:00

I've been back at work now since 26th April. I'm doing a phased return - at the moment just 4 hours a day 3 days a week and although I thought I'd be able to 'up' my hours quite quickly, I realised after the first 2 weeks that I need to pace myself.

I was going to try to increase my hours this week to 5 hours per day but after a meeting with my Office manager she convinced me to stick to the 4 hrs for now - and to be honest she's right. I'm feeling uncomfortable sitting upright for long periods, I'm way more tired than I thought I'd be after working just a few hours - but at least I'm back in the land of 'normal' once again.

Today we discussed getting me a cushion or back rest to support my lower back whilst sitting. I'm going to look into this tomorrow as this dull ache is really draining. The achy pain is in the original tumour site - it could well be scar tissue, it could also be because the bloody wound still hasn't healed or it could be something more sinister.

Right now I don't have the answers - so I'll get a cushion support organised and see how it goes.

Not long now until my 'chat' with the colorectal nurses when I have my check up in June.

I've been trying to find out what the 'standard' post op care plan is for colorectal cancer. What I've discovered is that there is no 'standard' post op care plan - it varies from region to region.

The charity 'Beating Bowel Cancer' gave me some advice about probable reasons for not scanning me for 12 to 18 months after surgery....... Basically it's because they don't want to subject me to further Radiation haha bloody ha....

I kinda think that the original treatment - that burned me so badly - would have already caused any future problems and it's unlikely that a scan is now going to do more damage than what has already been done.

Today I found out that a cyber friend who had the same op as me in December (a month after my op) has already had a check up scan. Mine is another 6 months away as things stand at the moment.

I can't feel 'clear' of this until I've got some proof. So although I'm moving on by returning to work, I'm not really moving on at all - if you understand what I mean.

Heyho...the fight goes on........

PS. If you've had colorectal cancer I'm really interested in hearing about your post op care. How long after surgery was your first / second scans etc and any other info.

5th May - Mum's Birthday :-)

2011-05-05T09:47:00.011+01:00

Happy Birthday to Mum.

Mum and Dad have gone to Rhodes to spend the next two weeks with Sarah...I know they were hoping for nice weather (although they wouldn't have actually cared if it did rain every day).

Here's a weather report for you Mum - enjoy your birthday and relax in the sunshine for the next 2 weeks :-)

Today May 05	Sunny	69°/61°	0 %
Fri May 06	Sunny / Wind	68°/58°	0 %
Sat May 07	Sunny / Wind	67°/57°	0 %
Sun May 08	Sunny	66°/57°	0 %
Mon May 09	Sunny	68°/59°	0 %
Tue May 10	Sunny	69°/61°	0 %
Wed May 11	Mostly Sunny	70°/61°	0 %
Thu May 12	Mostly Sunny	69°/62°	10 %
Fri May 13	Sunny	70°/62°	0 %
Sat May 14	Sunny	70°/62°	0 %
Last Updated May 5 08:20 a.m. Local Time This is the view that they woke up today........

Which is a HUGE improvement on what they usually wake up to....below

Have a lovely time and a great birthday

Lots of luv from us all xxxx

This made me smile today.......

2011-04-29T20:59:00.004+01:00

It would appear that one prince is just not enough for bride-to-be Kate Middleton.

An online company claiming to sell "Will and Kate" wedding memorabilia have made a royal mug out of the occasion by advertising a cup with the wrong prince on it.

Miss Middleton is printed on the "limited edition heirloom" smiling away in her infamous blue engagement dress - right next to Will's brother Prince Harry.

The limited edition souvenir by Guandong Enterprises Ltd is to commemorate the "fairytale romantic union of all the centuries" and retails at £9.99 plus postage.

It is not clear whether the blunder is a witty joke or a right royal mistake.

On the website, the mug is advertised as "the finest bone china" featuring an exquisite design of the "happy couple".
Deadline News

Beating Bowel Cancer Month.....

2011-04-28T23:05:00.007+01:00

April - Beating Bowel Cancer month.....it's nearly over now but that doesn't mean you can become complacent!

This is a US video below, therefore mentions being 'over 50' and having your colonoscopy.

In the UK there is a different, non invasive, test that is for 'over 60's' (England and Wales) so ensure you do this even if you have NO symptoms.

If you have symptoms and are younger than 60 then GET CHECKED OUT!

In the meantime, watch this video and maybe it'll make you smile

Takes Your Breath Away.........

2011-04-26T00:12:00.004+01:00

Every once in a while you see something so beautiful that it literally takes your breath away...

Whilst browsing around on other people's blog's I found this amazingly talented artist, Tara. On her blog is the most beautiful drawing of a cat - Tara recently did this drawing (Yes, it's really a drawing) using coloured pencils.

I think it's just so beautiful and wanted to share her blog with you all.

One day, when I'm back in the land of the financially sound, I'll be getting one of these of my own gorgeous little cat, Dizzie

Have a look at her work, if you know anyone that might be interested in getting their own pet drawn by Tara then do pass on the details of her blog.

She resides in the US but will post worldwide....

Now, look at this drawing and tell me what you think.........

http://taratiberiofineart.blogspot.com/2011/03/jenga-finished-portrait.html

If you click on the archive link, you can see the work of this drawing in various stages.

What takes your breath away?

What makes you use the words 'beautiful' 'amazing' or 'breath-taking'?

April and Easter comes around again......

2011-04-22T23:12:00.003+01:00

April is a funny month for me - not funny 'haha' but funny as in 'peculiar'..... I really don't know how I feel about April anymore :-(

Last year I started this blog - in April.

Easter was earlier last year - I know this because I was laying on the sofa for days wishing the GP's would open before Tuesday, 6th April because I was in so much pain and felt so totally crap. Easter was Friday 2nd to Monday, 5th April 2010

6th April was when a GP finally listened to me, stopped telling me I was simply depressed and got around to listening to all the vague symptoms I'd experienced over the previous few weeks/months.

6th April was the day when I left the GP surgery and absolutely knew (despite the GP's reassurances) there was something to worry about.

14th April was my first appointment at the hospital, my first biopsy, the first time a surgeon avoided eye contact with me when I asked directly 'Have I got anything to worry about'?

14th April was the first time my blood was taken to be tested for 'tumour levels'

20th April was my CT scan to check for localised spread

21st April was my Colonoscopy

22nd April was my Ultrasound Endoscan

28th April was my MRI scan to check other areas for spread

28th April was also the day I had my 2nd appointment at the hospital when I was told you have Stage 3 rectal cancer and unfortunately because of the position of your tumour we will need to remove the whole rectal area and provide you with a permanent colostomy

Actually whilst writing this I've realised that I do know how I feel about April - I now f**king hate April - but not nearly as much as I f**king hate cancer......... :-(

Yes I have moved on, yes I've had my treatment and my surgery, yes I'm recovering from it *still*, yes, I can live with the bag but I still hate April....

In a few days I'm going back to work, back to some kind of normality and hopefully I can put most of this last year behind me - but there's still that lingering doubt at the back of my mind that this fight isn't over yet.

And I think I will now always hate April and I will definitely always hate cancer :-(

I don't really know why I wrote this post, mostly I don't understand my own thoughts these days - but I suspect that anyone who has been diagnosed with cancer will understand it.

That's it for now - much love to all and thanks as ever for the support you've all given me over this past crappy 12 months.

Just wanted to share these with you all.....

2011-04-15T14:49:00.007+01:00

My lovely handsome eldest son, James, and beautiful daughter in law Leanne just returned from a wonderfully relaxing holiday in the Dominican Republic.

After all the stress we've had with me over the past year, this was exactly what they'd needed to get away and recharge their batteries..they had a great time and I wanted to share with you a couple of their pictures to prove it :-))

I'm just SOOO happy that they had a nice, relaxed time and were able to get away from it all for a brilliant break.

James and Leanne, I love you both more than words could say - it's great to be able to post 'happy' stuff which shows life continuing the way it should do.

My only complaint is that you didn't take me with you LOL :-)))

Goodbye David.......Safe journey

2011-04-12T15:11:00.002+01:00

Today, our Friend David lost his battle....

David, you fought a hard fight and couldn't have done anything more...I shall miss your words of wisdom, humour and fighting spirit enormously. I will never forget you.

Thanks to everyone for the prayers and thoughts.

Hugs to you Geraldine and the rest of the family

xxxx

David's journey is in my blog list 'You Win Again'....

Want a Great Badge?........

2011-04-11T11:27:00.003+01:00

April is Beating Bowel Cancer month and to raise funds and awareness the charity 'Beating Bowel Cancer' are giving away a 'bum badge' with every donation made during April....

If you want one of THESE great little badges .....

then go to www.beatingbowelcancer.org/donate.

Also find Beating Bowel Cancer on Facebook, 'like' them to continue raising awareness of this very treatable if caught early cancer.

Blog worth noting..........Mums That Work.com

2011-04-07T08:54:00.005+01:00

Recently I was asked to write a 'Guest post' on a blog to help to raise awareness of Bowel Cancer.

I agreed to do this because the more people that know it CAN happen if you are under the screening age (currently 60 yrs of age in England/Wales and 50 in Scotland) the better.

Reminder: April is 'Beating Bowel Cancer' month here in the UK.....If you have symptoms it doesn't automatically mean you have cancer but any symptoms do need checking by your GP.

Don't be fobbed off - persist if you're not happy with the diagnosis initially.

Unfortunately many GP's are still spinning the 'You're too young' line :-(

The blog that I wrote my post on is here http://mumsthatwork.wordpress.com/2011/03/

Loopy (Lisa) has also written a piece on this same site...you can find Lisa's blog in my blog list on the left 'Rectal Cancer - How to Kick It's Sorry Ass!'....

Also Paula has kindly commented on an article about the 'Look Good, Feel Good' workshop that she attended last year. Paula's blog is also in my blog list entitled 'Hodgkins Lymphoma'

Gillian the lady who has set up 'mums that work' is trying to raise awareness of all types of cancer, illness, disability and all issues that can affect us including domestic violence, being a carer and numerous other subjects. Her blog makes interesting reading.

If you have a story to tell that may help others - doesn't have to be about cancer - then contact Gillian via her blog to discuss. You can also contact Gillian via Twitter if you prefer.

Life is like...............

2011-04-06T23:16:00.002+01:00

Yesterday Dj was looking very thoughtful and was obviously pondering something. I asked him what he was thinking and he said

'I'm thinking about life actually'

Hmm, bit 'deep' for an 11 year old really so intrigued I asked him to explain.

He said:

'Well, I was thinking that life is like an Airfix model actually, you start off with all these bits that go together somehow but it has to be built and improved, because just looking at the bricks is not the full picture.

So someone has to put it all together and build it up bit by bit and then eventually you end up with a working model.

It takes ages to get it finished and then you put it on display out in the rain and the weather chips away at it bit by bit, storms come and knock bits off, the rain damages the outside sometimes and other times the sun beats down on it and changes it's appearance and also insects get into the inside and live there

Then finally one day a BIG storm comes and knocks it all into a 1001 pieces again it's broken and then someone has to start again and build a new one...

So I was thinking that 'we' are like Airfix models, in pieces as babies and then in pieces again at the end but during this building process people learn to build new, more complex models and then the process starts all over again.

Although you might not have the model any more you never forget it'.....

Deep thoughts .........

Time for an Update on ME, ME, ME.....:-)

2011-04-06T00:05:00.002+01:00

So, what's been happening with me then some of you have recently asked?....

It's true, I've not really said too much lately - not about my cancer anyway. I've always got plenty to say but sometimes I avoid talking about me, me, me all the time :-))

But this is my blog and today I'll tell you about me!

Wound - still the same, still not healed properly, still sore and uncomfortable but bearable.

Stress levels - greatly reduced since I took myself off for my surprise trip to sunny Rhodes - thanks Sis and M xx

Counselling - I've decided I don't want to do this now. I needed a holiday it seems and since I've done this I don't want to go through the counselling process right now.

Colostomy - part of my daily routine now, no big deal and something I just have to do in much the same way as other people need to poo daily.

The only difference is that I can actually watch mine exit and YOU can't (sticks tongue out and laughs)

I found bags that seem to work okay for me. They are called 'quiet' bags from the Hollister range. If anyone wants details you can email me via my profile page.

At night I use small tiny little 'caps' as the stoma seems to shut down after about 1am.

Weight - increased and now back to my pre surgery weight of 53kgs.

Diet - eating pretty much what I want to and still sorting out things that disagree with me. The list is pretty much the same as last time - Broad Beans and Puy lentils give me stomach pain, Green Beans give me excessive wind, Coleslaw also gives me a stomach ache....most other foods are okay.

Symptoms - still quite tired at times, have a strange pressure pain in the original tumour site, temperature fluctuates quite a lot (this could of course be due to being thrown into early menopause after the Radiotherapy), joint pains are still there mainly on the left side - shoulder, arm, knee and hip, headaches have returned but are responding to normal over the counter meds, sleep is still an ongoing issue...I find it hard to sleep but maybe that's just the way it is now - my new 'normal'

I'm planning my return to work, hopefully around the 25th April. This will get me back into some kind of normal routine and then I've got my first post op check up on June 13th...good job I'm not superstitious eh :-))

And that's about it really. Much luv to all xxxx

Prayer and Positive Thoughts needed.....

2011-04-04T01:05:00.003+01:00

If you are someone who prays and has faith OR if you don't but believe in the power of positive thought then please spend a moment over the next few days either praying or thinking of my friend David who is currently struggling so much.

He is a very brave man who has helped many others in their own journeys, despite his own ongoing battle with cancer.

His blog is in my blog list on the left 'You Win Again'......

Sis, I know you'll light him a candle too.

Many thanks xxxx

To ALL the Mum's out there.........

2011-04-03T12:15:00.003+01:00

To ALL the mum's and especially to ours :-)

Happy Mothers Day Mum from us all...Carole, Rab, Sarah, Manoli, Eddie and all the kids too.

Have a lovely, restful day....See you soon xxxx

I'm SO SO angry and upset........

2011-04-02T20:29:00.003+01:00

This has nothing to do with cancer....well actually is does - just a different type of cancer. This is the type that affects all of us in some way or another, it's a type of cancer that no amount of Chemo could control, Radiotherapy wouldn't help - I'm not even sure that there is a cure of any type as this particular cancer has grown completely out of control....

The 'cancer' I'm talking about are some of the youths in our society. Some who haven't got even the most basic of morals, some who think they can take from anyone because the world 'owes' them something - however they are not prepared to put anything back into society, just take, take, take.
Youths who think they are owed respect (but probably can't even spell the word, never mind truly understand it) Youths who will probably never work, never have any success in their lives and never know true values.

I'm tired of hearing about their poor little lives, one parent family status, poor background, yet another baby on the way to yet another 'baby mother'.
I'm tired of people like magistrates constantly making excuses for their behaviour and giving them chance after chance to go out and do the SAME thing all over again with virtually no consequences at all.
I'm tired of the rest of us having to support them and their rotten to the core families who have 'raised' them whilst living (sponging) off the rest of us.
I'm tired of people saying 'but they've not had an education'...well why bloody not! They get the same chances as the rest of us - you automatically get a FREE education in this country and they waste it by refusing to attend because they are too busy being involved in crime to get their backsides into school. There are people in other countries who would do anything to get the opportunity to provide an education for their kids - but not these losers who've had it easy their whole lives.

So, what's caused my total rant you may well be asking? I'll tell you.....

Today, my precious 11 year old boy who HAS morals, is attending school and tries to always help others was robbed and attacked TWICE in 15 minutes.

He went out with his friend to kick a ball around on the local common for a few hours, buy themselves some bubble gum and just get some fresh air on a sunny Saturday afternoon.
Dj has never been a 'street' kid, doesn't play out locally on the streets because the dregs of the earth play out round here. He has only recently been allowed to start meeting his friend and spending a few hours outside because we are trying to encourage some independence for him...but he's not allowed to just 'hang' on the streets at any time.

Firstly a gang of four much older teenagers (one of them female) robbed him of his phone (a VERY basic phone with no picture or video facilities - this phone simply sends texts or makes a call) and his wooden catapult which was a present that I'd got him in Rhodes recently...
He did exactly what I'd told him, didn't argue with them and walked away. I've always said material things mean nothing - we can replace them but we can't replace him - luckily he remembered this and simply turned and walked away.

As he was making his way home to tell me about what had just happened to him he heard running footsteps behind him and turned around to receive punches to his face and head by a 'different' gang (although both I and the Police suspect they ARE connected)...
This second group consisted of 3 teenagers (with their faces covered and hoodies up) and he was then ordered to turn out his pockets and forced to hand over his £1 coin...
Yes, having a whole £1 coin on you now gets you punched in the head until you hand it over.
He was then told 'Right now F**k off home'!
Leaving my boy there crying and distraught they swaggered off down the road to spend his pound and must have felt so proud of their afternoon's work.

He arrived here with his face all red and swollen on the right side and was shaking with fear. These bastards robbed an 11 year old child for a pound.
I'm not a vindictive person, I make a point of not wishing bad things onto people but today I WANT something to happen to them instead of the numerous good people that find themselves battling with what life throws at them.

Does this make me a bad person? If it does, right now I don't care.

Bastards!

The police were brilliant and arrived within 5 minutes. They then took him out in their car for over an hour, driving round seeing if he could spot any of them.
I apologised for calling them for something that is 'trivial' considering what they have to deal with around here, but they assured me that it is NOT trivial.

We had some discussions whilst driving around and they also are sick and tired of these types of crimes being treated leniently. They told me that as they get older these scumbags progress from street robbery using punches, to robbery using knives then finally they start to use firearms in their activities until they either kill or maim someone.

Down the road from us this week a 5 year old girl was shot along with a male relative whilst standing in a local shop...This made National news.
Two youths ran into the shop trying to escape from others chasing them - when the others arrived they opened fire into the shop and this child was gunned down...5 years old in a shop!....
Today the Police told me that the people responsible for such appalling crimes start with 'easy' robberies such as the one on Dj today.

So every Magistrate that doesn't apply the force of the law onto these thugs when they are caught early in their chosen 'careers' is responsible for the injury and sometimes the murder of innocent bystanders. All because they want to make excuses for these lowlife, cowardly scumbags.

I know we are now finding some ways to put some cancer's into remission - but I fear that this particular cancer cannot be cured.

This will take just 3 minutes of your time....

2011-04-01T12:01:00.004+01:00

Watch this video and it could save your life.........

April is 'Beating Bowel Cancer' month...familiarise yourself with the symptoms and remember that you don't have to have ALL the symptoms. If in doubt, check it out

And this one added today, 5th April 2011, will take just 10 minutes of your time....

http://thismorning.itv.com/thismorning/health/beating-bowel-cancer

This video above may not be available to those outside the UK....but for those inside the UK it's worth watching.

On a Mission now........

2011-03-31T10:36:00.017+01:00

Recently, since I've started to feel a little better, I've been researching stuff about screening programmes and raising awareness - particularly in the UNDER 60's age group for Colorectal (Colon/Rectal/Bowel) cancer.

Some of you may, or may not, realise that in England and Wales the screening kit is sent out automatically to people between the ages of 60 and 74 years of age - HOWEVER in Scotland their screening programme begins at 50 years of age.

This seemed odd to me so I emailed the NHS Cancer Screening department last night and asked the following question...

I am curious to know why the screening programme is aimed at the 60+

age group in England and Wales but starts at 50 yrs in Scotland.

Since my own diagnosis of Rectal cancer (at 49 yrs old) I've come

across others in their 40's and even some in their 30's.

Screening at 60 is showing positive results but starting at 50 may helpto find some tumours before they develop to a later stage.

I'd be interested to know why there is a difference in screening ages  in Scotland compared to England and Wales.

Today I received a reply....

Before starting the screening programme we conducted a pilot study which showed that the most clinically and cost effective age to start screening was 60. 80% of bowel cancer cases occur in people over 60. It may be that we will extend the age in the future.

Now.... you all know me well enough to realise that this is not a proper reply to the question that I asked therefore further communication was necessary :-)

Thank you for the reply....  
However, I'm still unsure as to why Scotland start their screening at  50 not 60.... 
Do they not come under the NHS as well? 
I need to understand why there is a difference

Their follow up was brief and to the point .....

Carole They do but they have a different budget and so decide on different priorities.

Anyone else think that as England and Wales come under the same NHS, we should ALL be being offered the same screening service? 

Usually, after a bit of a rant, I'll say 'Off my soapbox now'....BUT not this time. 
Why is life considered to be of more value in Scotland if you're in the 50+ age group...why is it not important that some of the 20% of cases that occur in younger people could potentially be caught at an earlier stage?......MONEY and BUDGETS and 'different priorities'...
If you are in the 50 - 60 age group, how does it feel to be told you are not a priority when your cousin/friend/etc up in Scotland is? 

Admittedly, in my case, it WOULDN'T have made any difference at all (there's no way they'll consider lowering the age to 40) but surely it COULD help the percentage of people who fall into the 50-60 age group in England and Wales. 
Best thing to do is we should all move to Scotland in our late 40's eh 

There are currently approximately 40,000 cases of bowel cancer discovered every year - which means that around 8,000 of them will be in people under 60...
I'd love to know how many of these fall into the 50-60 age group. I'd guess at 'quite high' figures...

Remember also that if discovered by screening many people will not fall into the later stage categories - therefore saving the NHS a fortune on surgery, ongoing chemotherapy, radiation etc. 
The smaller and earlier a tumour is discovered means less treatment and less cost to the NHS...do they really think that money saved on NOT screening is cost effective in the long run? 
I can't see that myself. 
My operation alone must have cost them thousands, along with my 10 days in hospital, Chemoradiation treatment prior to surgery then adjuvant Chemo (if I'd decided to do it) plus now ongoing check-up's for the next five years..... 

Interested in your comments.

And no, I'm not getting off my soapbox....I'm going to think about what to do next about this unfairness. 

In the meantime, I'm concentrating on trying to raise as much awareness as possible with regard to symptoms.

Added Note:
 
I've received  numerous emails about this post - all offering help and this is something below that I need help with at the moment.....

If you can find any statistics for me on people between the age of 50 and 60 who are diagnosed with bowel/colon cancer that would be really helpful. 
I can only find 'overall' statistics at the moment. I know that 80% of cases occur in the over 60's but need to know HOW many fall into the 50 - 60 age group. 
The other data I'm having trouble locating is how many people between 60 and 65 are diagnosed at Stage 3 or above via the screening process. 

Any links appreciated - many thanks. x

Travelling with a Colostomy Bag....

2011-03-28T10:24:00.004+01:00

Before I organised my surprise visit to Rhodes I admit to being worried about moving outside my comfort zone with 'baggy'.......At home I'm in my routine, I know exactly where everything is and my daily routine now takes probably less time than going to the loo in a normal way would.

However being 'away' from home was something I'd not tackled previously - apart from my time in hospital of course....but that was when I still hated baggy, when it took up my every waking thought and was the cause of huge distress to me, initially.

So, before I went I read up on various different websites about any potential problems with travelling - particularly flying. I read that some people said it was 'fine, no effects at all' whilst others said their bag had 'inflated during flight', or been 'particularly noisy' and they'd felt embarrassed by it.
I decided the only way to find out was to try it and see!

I took all my supplies in my hand luggage for two reasons, firstly so that I could do as many changes as I felt I needed to and secondly just in-case my luggage went astray. I didn't fancy being stranded without bags for even a few days!

I can now say without a doubt that travelling with baggy is easy, no different from going to Sainsburys or anywhere else locally. It didn't inflate, it wasn't noisy and the whole flying experience was the same for me as for everyone who was bagless! :-)
I'd forgotten how noisy planes are anyway - even if it had decided to become fartybag for the whole journey, no-one could have heard anyway....but it didn't behave any differently to normal anyway.

Heathrow was an experience though...if this had happened to me a few months ago I would have been mortified and fallen apart in tears - but not now :-)

As I went through the scanner at Heathrow the alarm went off (this is 'normal' apparently for both me and Sarah - for some reason we both set off alarms for no apparent reason)

Security woman says in her 'stern' voice
'Step to one side and raise your arms'
She then uses her little handheld scanner on me which doesn't make a sound. So she then 'pats me down' and all is well until she arrives at the bag area.
'What's this?' she asks LOUDLY!
I say (perfectly calmly & quietly) 'It's a colostomy bag, I have a permanent colostomy'
'What's that then?' she says, again LOUDLY
By now a few people have turned around and are watching the developments with interest...they probably thought they were seeing a drug dealer caught leaving the country with their stash

I said 'I have a permanent bag attached, I have a stoma, I had cancer'
She says 'Lift your clothing so I can see it & investigate the contents'
I say 'Nope'
She says 'Pardon! What do you mean 'No'?'
I tell her I'm not lifting my top in view of everyone, and again say it's a colostomy bag that I have for medical reasons
She says 'What's in it then?' LOUDLY
I say 'Crap' (LOUDLY) because now I'm pissed off with her bossy attitude and mannerism towards me
She just looks puzzled and says 'I need to see what's in the bag'
I now start to laugh and say 'No you don't, really you don't want to see - trust me on this one'
Luckily I then spot her colleague standing just to the left of me and I ask him 'Excuse me, do *you* know what a colostomy bag is?'....
He replies 'Yes madam, I do indeed'
So I ask him if he can please explain it to his colleague without the need for me to show her - in public view of everyone!
He speaks to her in Urdu - she looks completely shocked and says 'Off you go then'

LOL! I can't believe I'm the FIRST person she's ever come across with a colostomy but if I am, I hope I've made her think about *how* to ask those difficult questions.

All was then well until I got to Athens - where I had to change flights. This is because there are no direct flights outside of the holiday season.

Going through security to get my connecting flight the (very nice) security man asks me to open my hand luggage bag and explains that the scanner has picked up a spray can. He says it's probably perfume or similar that I've forgotten about.
I open my bag and take out the spray (which I'm allowed to travel with) and he looks at it and says 'It's fine....may I ask why you have a colostomy?'..
I tell him it's because I had cancer and to remove my tumour I had to have a permanent colostomy'
He looks quite sad at this and says

'But you're so young!'..Lovely man :-)
I say 'Yes but at least I'm alive at the moment, eh' - he smiles and says 'Welcome to Greece, have a great time'

Yes! that's more like it Heathrow lady. It just takes a few moments to *think* about what you're doing and all is well.

I was also searched at Athens coming back - again the alarm went off (sigh) and although she scanned and then hand patted me down she completely missed the bag, so no need to go through it all again.

So, if you have a permanent colostomy (or a temporary one) and this is what directed you to my website I can tell you that travelling with your baggy will be fine :-)

Just be prepared to come across people who've not had any proper training in this area :-)

Apart from that, remember to pack your supplies in your HAND luggage and not your suitcase and all will be well.

Another note on the 'bag'...some people have asked me why I've not named it. Simple answer is because I never named my bum so I don't want to name my stoma. 'Baggy' it is and baggy it will stay.

Happy camping travellers :-)

Much luv xxxx

People who made it possible........

2011-03-25T23:25:00.002Z

Now that I've let you all know where I was for my surprise visit, it's time to thank those that made it possible.

Big thanks go to Rab, James & Leanne, Jacqui, Mum & Dad, Nayla...without your help I couldn't have done this trip.

Jacqui came up every morning at 7am to sort out Dj and make sure he got to school on time, had breakfast and was organised.
Mum and Dad made sure he had someone to come home to after school. Mum also helped him to complete his geography project which turned out brilliantly and has put him in line for a 'house' prize.
Rab organised the place so that uniform was ready, homework was completed on time and kept things running - as well as going to work for 6 days without a break.
James & Leanne took Dj for the first weekend so that Rab could work on a function without worrying about Dj at home.
Jacqui and Nayla sorted out the following Saturday for Rab whilst he, again, had to work.

So sending HUGE thanks to you all for your ongoing support. Some things would not be possible without you guys

Much luv xxxx

10 Days in Rhodes ...........

2011-03-23T12:50:00.026Z

As some of you rightly guessed, and some of you knew before, I decided to pay my sister Sarah a surprise visit in sunny Rhodes.

Me and the bag set off on Friday, 11th March and returned on Monday, 21st after spending 9 days in the (mostly) sunny weather. The days were spent sitting by the sea, climbing mountains (okay, that's a slight exaggeration - it was a very large hill that felt like a mountain), browsing in the few shops that have opened pre-season, visiting a few local attractions and just simply relaxing for the time I was there.

My sister had no idea that I was arriving. When I reached Rhodes airport on the Friday evening I telephoned M, her partner, and he came to get me without telling her where he was going.

He went into their apartment ahead of me and spun her a tale about having a customer in the taxi who needed somewhere to stay for the night. (I was hiding outside whilst all this went on)

Sarah point-blank refused to have some strange 'bloke' in the apartment whilst M returned to work.

In the end she agreed that he could come inside to eat before M took him elsewhere.

I then came inside the apartment and initially she didn't register it was me, but after a second look she just stood there saying 'Oh my God! I don't believe it! How are you here!' then burst into tears....happy tears I hasten to add :-)

I reminded her that I'd told her previously that one day I'd just turn up at the airport and call a taxi to get to her. Now she knows that I wasn't joking.

We spent the week relaxing, catching up, going for coffee by the sea & in town, visited the house that Hitler lived in for a while during WWII, went to Kallithea Springs, Rhodes Old Town...some pictures below.

It's very early yet for great weather in Rhodes, and the week before I arrived they'd had lots of rain and grey clouds. I wasn't expecting sun at all but that is exactly what we did get...sun, sun and more sun. It wasn't high temperatures (between around 19c/21c) but every day, apart from one, was a clear blue sky with just a scattering of fluffy clouds.

So, I took the sun to Rhodes with me and then I brought it back with me. Yesterday and today have been lovely here in London - I was outside with Dizzie cat earlier in a T-Shirt ....two weeks ago I was in heavy winter jacket and gloves here - and that was just to put the rubbish out LOL!

This is the view that Sarah wakes up to each morning......

Here is the chapel where Sarah regularly lights candles for many of you...

These next two were taken inside the chapel....

Two sisters enjoying the spring sunshine & relaxing with a coffee in one of the numerous great coffee shops in Rhodes........

How blue is that sea!................

We went up the mountain to see the house that Hitler lived in during parts of WWII.

On the way we visited a very old Chapel and outside there is a tree that is apparently 'thousands of years old'. The inside is completely hollow so obviously we couldn't resist taking the 'tourist shot'

This was the very pretty 16th Century Chapel - there were bee's nesting inside, the sound of their buzzing was really amplified once you entered.....

This is the remains of the house that Hitler had built for him...it's been left to rot on purpose

Halfway up the mountain

Old Town Rhodes, inside the Castle walls......

There are LOADS of stray ferral cats in Rhodes. This one has adopted Sarah and unlike the vast majority of cats there, he is confident about being around people. Sarah now feeds him daily and has named him Spanos.

The next few pictures are just random scenery shots...I want people to know that there is so much more to Rhodes than just the Faliraki nightlife and the beach...

That's it for now....I'll do a separate post about travelling with the bag & other stuff at some point.

Friday and it's sunny .......:-)

2011-03-11T08:40:00.003Z

Today I woke up to lovely 'spring' sunshine and decided that me and the bag are doing something together that we've not done before.....

I'll let you know what it was and how I got on later.......

Any guesses? :-)))

Made some plans now........

2011-03-07T00:33:00.002Z

I've moved forward somewhat since I've made some plans...

Last week I went to see my boss and had a meeting to discuss how I'm doing. She has been incredibly supportive and assured me that there is no pressure at all and I should only return once I feel well enough to cope.

She also offered me reduced hours, reduced days, any equipment that will help me (special cushion, foot rest etc) and it's made a huge difference to how I feel.

I realised some time ago that I was struggling with guilt...sounds stupid maybe but I reckon people out there with cancer will be able to relate to what I'm saying.

Apart from all the physical stuff you go through with cancer there is also the emotional and financial side of things.

As I said, I realised some time ago that I was struggling with guilt..I felt guilty for being unwell and messing up the finances, guilty for not being at work because of the increased workload put onto my colleagues, guilty for worrying everyone in the family, guilty for not being able to do domestic stuff and watching Rab work all day then come home and sort things out here, guilty when I see/hear about others who are struggling more than me, guilty for just getting cancer.

But then I had a long chat with Hazel a few weeks ago and she helped me to put things into perspective - thank you Haze.

Firstly she told me to 'put to bed' the idea of coming back to work right now simply because I was setting myself unrealistic dead-lines - hence increasing my feelings of guilt when I couldn't meet them.

We also discussed other things which I'm currently putting into place - she gave me a shove when I needed one and I've since been able to start planning again - but in a realistic way now.

So my plans are to do my counselling (when he finally gets back to me with potential dates)...to look into doing some Yoga or similar....keep eating healthily and take my supplements......return to work after the Easter school holidays IF my wound has healed properly and I feel able to.....forget about June until June arrives and then worry about my CEA levels and scans only once I get results....get away for a break (planning on visiting my sister in the summer - more on that nearer the time)

My wound is still healing but it's nowhere near as sore as it was a while ago.

I'd like to say I'm no longer tired out, but truth is I am some days. Again though, it's better than it was a while ago.

I no longer have hormonal headaches (radiotherapy frazzled everything & threw me into immediate menopause) which I've suffered from all my adult life so that's a definite 'YAY' moment :-)

I no longer care if all the housework isn't done on time.

I've made plans and I'm going to move forward over the next few weeks, without a doubt.

Doesn't fit our criteria...........

2011-02-28T23:10:00.002Z

Since I've been at home more during the day, I've realised exactly how many 'cold calls' I really do get during a single week!

They go through stages, either selling mobile phone contracts, or 'have you had an accident that wasn't your fault' type legal stuff, or more recently 'life insurance'.

I've answered at least 8 calls now from the same company over the past 3 (working) days and it's becoming boring now. So tonight decided to go along with it and see what they'd say (instead of my usual 'No thanks, not interested').

So the phone rings, around 8.30pm - like you'd even WANT to discuss life insurance at 8.30pm if you'd been at work all day - and I answer and play along.

Cold caller: Hello, I'm not going to try to sell you anything, I'm just going to ask you a few questions and see if I can help you reduce your life insurance payments (ask me questions? Why? If you're not going to sell me anything hmmmm).....

Me: Umm, I'm not sure you can help me really

Cold caller: I may be able to help you pay less to offer your family complete protection, if I can just take a minute of your time I may be able to help you sleep easier knowing you've done your best to protect your loved ones

Me: Okay then, away you go

Cold caller: confirm you are Carole, this is your address, this is your age, do you have any dependent's, how much do you currently pay, which company (all of which takes longer than a 'few minutes' of my precious time, as she's still chatting away in-between about 'helping me to help my loved ones')

Then, crunch time......do you have any problems with your heart?

Me: No, none

Cold caller: Do you have cancer?

Me: Yes

Cold caller: You do have cancer? Really?

Me: No, I made it up.......(sigh)...Of course I have cancer, it's not something you joke about generally eh?

Cold caller: Ummm, ahh, ummm, I'm afraid you don't fit our criteria, sorry about that

Me: Hold on, I thought you wanted to help me protect my family? I thought you cared? What's the point in offering life insurance to only healthy people? You really really wanted to help me 5 minutes ago, what better way than to give me life insurance.

Cold caller: (now embarrassed) I, um, I don't really know what to say except that we don't insure people who are possibly, likely, to have a shorter life....(can tell by now that she really wants to end this conversation, quickly - so I carry on :-)....)

Me: I thought insurance was about 'risk' and 'offsetting risk'? Surely you insure healthy people knowing that they are likely to live longer and therefore you can afford to insure people like me, their payments will cover me. So, how much will it cost me per month?

Cold caller: I'm really sorry, we can't insure you, you just don't fit our criteria.

Me: What's the criteria then?

Cold caller: Well, you can't have cancer and get insured with us

Me: Why not? My surgeon doesn't know if I'm going to die so why should your company assume that I will

Cold caller: I understand what you are saying but you just don't fit our criteria - sorry....

Me: How can you have a criteria for selling me insurance when your opening words to me were 'I'm not going to try to sell you anything'?

Cold caller: Well, we don't actually sell the insurance, we drum up the interest and pass it on to the sales people tomorrow - but unfortunately you just don't fit their criteria

Me: Good! Then just stop bloody phoning me all the time then.

Wonder if I'll hear from them again tomorrow :-))

Blood Test Results & Beans and Pulses :-)

2011-02-22T22:23:00.008Z

Today I went to the GP to get the results of my recent blood tests.

Good news is that my Vitamin D level is 'very good'. In fact the GP said it was the best levels he'd ever seen in ANYONE in this country! Yay, I have good Vitamin D levels :-)

Higher vitamin D intake needed to reduce cancer risk

Haemoglobin levels were 'a bit low at 11'...told him they dropped to 4 after surgery (hence the blood transfusions) and then stabilised at 11.5 a few days after.

After hearing that he feels that 11 is probably normal for me - taking into account a transfusion only pushed them up to 11.5

My CEA level was 5 prior to any treatment commencing - he confirmed that it is now 3.7....

Soooo, following major surgery and removal of the tumour it's dropped by only 1.3 which is 'disappointing'* ......his words - mine involved the F word rather than *disappointing*

However, we had a long chat and he said that because they (hospital) didn't do the CEA marker after surgery he has no idea what he's comparing this current test to -his theories are as follows:

could be that my body is still adjusting after surgery;

could be that I have a higher natural CEA level (which made little sense to me because it only went to '5' with a stage 3 tumour present);

could be that I'm one of those few people who do not show accurate results for cancer in CEA marker tests (although it's fairly reliable it's not set in stone which is why they don't use it for screening purposes);

could be that there's still cancer somewhere in my body.....

So, lots of could be's but no definite answers yet.

How do I feel about this? Okay actually - I'm thinking that we test again in June and see what's going on. Now I've got a level to compare to we can see what's happening (or not happening) in a couple of months time

Until then, don't ask me if I've still got cancer because the answer will be the same as last month, truth is I don't know - and neither does my GP (and the hospital definitely can't know because they've not seen me since December and won't be seeing me until June)

Anyway, what other things have I found out for sure recently?....Well, I know that Broad Beans now give me an awful stomach ache....Green Beans make the stoma fart (a lot!)....Baked Beans are fine (amazingly)...Puy Lentils give me a pain in the whole colon, Green and Red Lentils give me no problems at all....Lentils, nuts, seeds pass through your system exactly as they enter your body - in other words swallow a whole peanut by mistake and you will 'find' the same peanut later :-))

Actually that last bit about the peanut made me think....they tell you to eat nuts because they are full of protein and some contain selenium HOWEVER if they pass through your body exactly as you eat them, they don't break down at all, then HOW does the protein/selenium actually get into your system to provide you with any health benefits?

Answers in the comments section please :-o)

I've had a pre-assessment with the Counsellors and am waiting on a date for the sessions to start. He's trying to organise around the 3rd week of March.

Some days I think I don't need to see a Counsellor at all, other days I know that I do....Is the inability to make a decision dealt with in counselling? Lol :-)

Apart from all that, my lovely nurse J is back YAY!...she checked the wound and confirmed that it IS healing well - although still not healed it IS on the right path.

I definitely still have nerve damage in the posterior area - some parts are numb, some parts are sore & sting, some areas ache when I sit...

Sounds weird to talk about having an 'ache' in your bum, it's not a place you would normally get an 'achy' pain - if you know what I mean?.... When did you last say (people with bums this is for) 'I've got such an ache in my bum?'...See what I mean? It's not 'normal' to ache there...:-)

Moving on....chatting with J my nurse yesterday for a while after she checked the wound and she asked if I'd like to see the photo's of the friends wedding that she went to (for her 2 week holiday when she went away and LEFT ME with 'M').:-)))

So sitting looking through Face-book with her and see a lovely bride, gorgeous little bridesmaids, J was Bridesmaid too - and then the best man...

J tells me he's her very best friend and such a lovely man - I said "I know, he was my Anaesthetist, B"...Small world eh :-)

Now I know he'll get my message of thanks for his help and caring during my time in hospital.

S'all good - much luv to all xxx

Trinity Hospice Fund Raising

2011-02-17T21:05:00.002Z

As you know I set up a fund-raising page on 'Just Giving' to raise necessary funding for my local hospice, Trinity Hospice.

Initially I set my target at just £200 - today that target was reached and I just want to express my thanks to everyone who has donated so far.

Each pound makes a difference to them, especially as they only receive about a third of their funding from the government. As we know, cut backs are currently taking place and it is more than possible that even this third may well be reduced in time - therefore fund-raising becomes even more necessary for such a worthy cause.

Today I have adjusted my target to £300. If you meant to donate but haven't done so as yet, please remember that every penny is appreciated....help me to reach my new target of £300 if you haven't yet donated and won't miss a pound....

Thank you to all who have and those that will :-)

Three months post surgery, so why am I not 'better' then.....?

2011-02-14T22:48:00.007Z

Now it's time to talk about me again....I've sort of been avoiding this until I'd spoken to my family in depth because it's not something I want them to read via my blog first.

Since my surgery, and even before my surgery, I was managing to keep on top of things and convince people that despite all the crap (deliberate pun) I WAS coping really well, I tend to joke my way through life at the best of times but it's a cover up for how I'm really feeling.
Since my surgery I literally feel as though I've been hit by a steam roller, flattened into the ground and left for dead!

I saw my GP last Wednesday and we had a long long chat - lovely man. He said that he feels that now is the right time to admit that some counselling sessions will help me through the next bit of this journey. I agreed.
It was something that had been offered way back around last May but I resisted and decided I could sort myself out - but the truth is, I can't...and believe me, I have tried.

My GP feels that the combination of my struggle to get results reported, plus the continual ongoing pain from the wound area that hasn't healed is just a recipe for disaster. I cried, he listened and he told me that he feels that a weaker person would have been on their knees by now after what I've been though.
Now you see, this is actually weird for me to hear because I honestly think I'm being a wimp and that there are so many people worse off than me.
I find it hard to view myself as 'strong' or 'resilient' I'm just someone that HAD to find a way to deal with cancer and that doesn't necessarily make me a 'strong' or 'brave' person in my view...and although I've been sort of dealing with it all, I've not managed to see the light at the end of the tunnel yet.

A large part of the uncertainty has been the continual struggle to get results confirmed by the hospital - I finally managed last week to get my PRE treatment CEA levels (which were '5') and then when I asked for my POST surgery results 'Sorry, we didn't do them'...
WHAT the F***!
How am I supposed to relax and start feeling confident that you lot did 'get it all' then?
How am I supposed to 'move on' when you can't tell me F**k all really?

I still haven't had the post op path reports or received ANY other test results in writing - everything has been verbal and only when I've pushed for answers continually.

I'm angry with my post op care, (lack of results being confirmed) I'm angry that despite doing all they said, my wound is still so bloody painful, I'm angry that I'm still exhausted most days and I'm angry at myself for being angry.
So in short I'm just angry and I don't know what to do with this anger or how to stop it.
So counselling is the route I'm now going to use to see if I can reach the light at the end of that long tunnel.

My GP arranged to do my CEA levels last week for me - and he's happy to do them every three months (for as long as I want) as he feels that it's way too long to wait until June.

He also confirmed that he personally is in 100% agreement with me (and my Oncologist) that there isn't necessarily a huge benefit in doing adjuvant Chemo with rectal cancer. It's the luck of the draw really - some people it works on, others it doesn't so he is happy that on this one I made the right decision for me.

We discussed my symptoms:
Are you sleeping okay at night?.........No
Are you feeling your energy levels rising? .....No
Do you feel that you are coping with day to day things....No
Are you irritable and stressed at times?....Yes
Are you noticing an increase in your appetite?...No
Do you feel okay one minute then very sad the next?...Yes
Are you prone to tears when alone?...Yes
Are you avoiding social situations?...Yes
Can you get through this without intervention now?...No
Do you feel suicidal?...No

Therefore we decided that a batch of sessions will be useful. I get my results for my CEA tests and other blood tests on the 22nd February. Maybe then I'll feel a little clearer about things but right now I'm living in Limbo-land and it's not the best place for me (or anyone else living with me either)!

Funny thing is that before the surgery I would have thought it would be the colostomy that pushed me into the direction of needing some counselling - but it's not. The one thing I don't need to talk about and don't feel depressed about is that - strange how things turn out eh!

Much luv to all and as always thank you for the ongoing support xxx

Algeria moves to stave off unrest......

2011-02-11T22:26:00.012Z

Algeria moves to stave off unrest - Africa - Al Jazeera English

Following on from the recent revolutions in both Tunisia and Egypt, who is next?

Rab and Dj were thinking about a week in Algiers during the half term holiday - for now, we've decided that it's not an option.

Could Algerian's stand against their government in the same way that Tunisians and Egyptians have recently done? Unlikely as the military there really do control things and unlike Egypt, would have no real qualms about shooting the people.

It has not been widely reported here in the UK that over the past few months at least 12 Algerians have set themselves alight in protest at the government oppressions inflicted upon them - it has not been widely reported that during their last protest, in January this year, 5 were killed and over 800 injured.

Whilst the world looked at Tunisia and Egypt, Algerian's were killed and injured but nothing was reported.

Tomorrow a march is planned in Algiers, the capital city. Demonstrations/marches are banned by the government - currently more than 20,000 additional police/military personnel are being drafted into the capital to assist the 10,000 already in place. Transport is being cancelled in an attempt to stop people attending.....

Will the march take place?
Will people lose their lives in an effort to better their living conditions?
Will the world notice this time... or will this be kept under wraps again whilst the world celebrates the downfall of Mubarak?

Update....2:40pm Twitter is buzzing with reports of the role of women in today's protests in Algiers, with some saying that police are tageting and arresting women. There are several photos of female protesters being hauled off by police on the wires.

All pictures from Al Jazeera - English
http://english.aljazeera.net/

Happy Birthday Dad....76 Years Young :-)

2011-02-07T10:57:00.006Z

Today is my Dad's (Paul's) 76th Birthday

I know you'll all want to join me in wishing him a Happy Day :-)

Last night we took mum and dad out for a meal - which I'll post about later today, for now I just want to say

Dad...Have a lovely day xxx