Rest in Peace.......

Dear all, 

Thank you all for you words of encouragement since mum was taken into the hospice, we have read her you thoughts and explained what a large impact she has had on so many people. She took great comfort in the fact that so many people have found her words useful and people are still only just coming across the blog now and will find it useful in their individual fights over coming months and years. 

She had been deteriorating quickly over the last few days and finally got to rest in peace last night, it was a real struggle to see her in such pain over the last few days, with this in mind we can solace in the fact that she is no longer suffering. 

Once again thanks for all your support and kind words during the last two years, it is truly amazing how widespread her blog became with readers from UK, USA, Canada, Turkey, Romania, Australia and Pakistan just to name a few with a staggering 81,000+ hits on her blog since she started. 

Hopefully you all keep blogging and helping each other as I know this is what mum would want and nice to think she could create some sort of legacy to encourage others to talk openly and help each other, just letting someone else know you are thinking of them or giving them the opportunity to have a rant is a wonderful help. Nobody should have to face these struggles on their own so please help each other. 

We'll be arranging the last part of mum's journey shortly, as most of you will know she choose a beautiful place to be at peace in Epping Forest Burial Ground. Not your tradition cemetery, she choose a place that the family could look forward to visiting, just need to find a nice spot near the bluebells and a rose bush.   

Lastly I just want to thank Clapham Common Trinity Hospice for there genuine care and compassion since mum arrived, it is a truly wonderful place and ALL the staff are an inspiration. Mum's wish was to raise as much money for them as possible so please donate if you can spare a pound or two and in the future we'll be arranging some sort of fund raising activities. 

Rest in peace my sweet darling mum. 

xxxxxxxx

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

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........

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........

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.....

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......:)

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!

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.