tag:blogger.com,1999:blog-20443391971637847882024-02-19T06:18:15.205+00:00What a Pain in the Bum !A blog about Rectal Cancer, and the roller-coaster it takes you on. No matter how sick you start to feel you just can't get off until it stops - one way or another - and in the meantime life goes on pretty much as normal.
So this is a blog both about rectal cancer and life going on as normally as possible... :-)
Please do feel free to leave comments, comments are great :-)Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.comBlogger217125tag:blogger.com,1999:blog-2044339197163784788.post-77976438542644062572012-03-17T16:02:00.002+00:002012-03-17T16:02:58.692+00:00Rest in Peace.......Dear all, <div>
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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. </div>
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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. </div>
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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. </div>
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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. </div>
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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. </div>
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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 <u><b>ALL</b></u> 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. </div>
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Rest in peace my sweet darling mum. </div>
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xxxxxxxx</div>Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com28tag:blogger.com,1999:blog-2044339197163784788.post-45537442696680917342012-03-07T21:44:00.001+00:002012-03-07T21:52:41.666+00:00Rough Justice In This Cruel Cruel World....!Hi cyber friends and followers,<br />
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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. </div>
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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. </div>
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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. </div>
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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! </div>
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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.</div>
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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". </div>
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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. </div>
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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 <b><u>YOU</u></b> now as a lot of previous decisions have been made for us, trying treatments and surgery she didn't really want to do". </div>
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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. </div>
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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.......
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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!</div>
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A CRUEL CRUEL WORLD.....! </div>
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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. </div>
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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. </div>
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</div>Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com40tag:blogger.com,1999:blog-2044339197163784788.post-78802701861962772472012-02-25T17:18:00.002+00:002012-02-25T17:48:27.359+00:00One Week back at Home........So today is Friday, 24th February 2012 and I've now been back at home for a week.<br />
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It's been a <b>really really</b> tough week :( <br />
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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.<br />
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 <b>doesn't</b> actually stop it!)<br />
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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.<br />
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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.<br />
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.<br />
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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 <i>too</i> much but I did have a gorgeous Spring Roll (yummy, my favourite thing to eat <b>ever</b>....I even dreamed about them in hospital) and a small portion of rice with beef & black bean sauce.<br />
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 :-)))<br />
Thank you Leanne xxXxx<br />
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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!<br />
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.<br />
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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 <b>know</b> 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.<br />
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.<br />
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Keep that positive stuff heading my way because it's obviously working :)<br />
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Back soon xxXxx Much love to all xxXxx<br />
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<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com27tag:blogger.com,1999:blog-2044339197163784788.post-46106837952289730282012-02-21T18:48:00.000+00:002012-02-28T11:12:57.678+00:00Back 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.<br />
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I arrived there with Rab around 4pm and from that point on, everyone provided me with exceptional care and compassion.<br />
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.<br />
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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.<br />
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.<br />
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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...<br />
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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.<br />
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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.<br />
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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.<br />
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.<br />
Surgery to remove any new masses also probably wouldn't be an option as it would take me too long to recover.<br />
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.........'........<br />
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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 <b><u>another</u></b> 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.<br />
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.<br />
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 <b>not</b> 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.<br />
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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.<br />
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.<br />
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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 <b>that</b> 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.<br />
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.<br />
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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.<br />
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Thank you all for caring about me and my family - I need you to know how much we appreciate it xxXXxx<br />
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<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com24tag:blogger.com,1999:blog-2044339197163784788.post-68876323261858445142012-02-18T19:27:00.000+00:002012-02-18T19:27:26.607+00:00Very 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.<br />
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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.<br />
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Thanks for all the messages, I'll get around to responding at some point.<br />
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Much luv xxXxx<br />
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<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com10tag:blogger.com,1999:blog-2044339197163784788.post-49922776753935493232012-01-22T01:16:00.003+00:002012-01-22T01:16:39.387+00:00Sticks, 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 :)<br />
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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!<br />
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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 :)<br />
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<br />
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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.<br />
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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.<br />
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.<br />
Thanks Sis, don't know what I'd do without you......well, actually I do....I'd <b><i>continue</i></b> to say I need to sort out my mobile deal and I'd <b><i>continue</i></b> to pay for all my text messages - I'd <b><i>still</i></b> be limping around saying I know I need a stick but can't find one....so, Thanks for organising me and sorting me out :-)<br />
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As for the 'plot' bit in the title above...this relates to burial plot.<br />
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.<br />
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 :)<br />
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 <i>three</i> memorials - the bat box, bird box <b>and</b> the bench...because I'm worth it :)<br />
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 :-)<br />
<br />
<a href="http://www.woodlandburialparks.co.uk/Epping-Forest-Burial-Park/Gallery.ice">http://www.woodlandburialparks.co.uk/Epping-Forest-Burial-Park/Gallery.ice</a>
<br />
<br />
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 <i><b>only</b></i> concern, because obviously he doesn't WANT me to be buried at all)...was that as you have to use biodegradable materials '<i>the foxes might dig you up during the night</i>'....LOL...<br />
His other concern was that '<i>it's a bit far for some people to travel to</i>'....again LOL.<br />
I told him that if it <b>was</b> 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!<br />
LOL Dad, you're soooo funny :)<br />
<br />
Lastly, Happy Birthday to my little brother Eddie - have a good one bruv - much luv always xxXXxx<br />
<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com33tag:blogger.com,1999:blog-2044339197163784788.post-83885312123691038622012-01-20T12:56:00.001+00:002012-01-20T12:56:19.454+00:00And 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.<br />
<br />
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.<br />
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.<br />
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'<br />
<br />
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.<br />
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.<br />
<br />
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 '<i>highly unusual although possible</i>'....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.<br />
<br />
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 '<i>too unusual for anyone to react so severely, although of course it is possible</i>'........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 <u>highly</u> contagious)<br />
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.<br />
<br />
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...<br />
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 - <b>more</b> 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.<br />
<br />
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.Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com14tag:blogger.com,1999:blog-2044339197163784788.post-57007125060627962792012-01-20T01:05:00.000+00:002012-01-20T01:13:01.684+00:00The following few days after Bloods and Drugs....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.<br />
<br />
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!<br />
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.<br />
Hmmm, decisions, decisions, which to have? - luckily Rab stepped in and said he'd buy me the scarf, so I got both :)) Brilliant :)<br />
<br />
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 :)<br />
<br />
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.<br />
<br />
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.<br />
We are all fellow bloggers - initially we all met on a Cancer Chat forum and built an online friendship, which developed into much more.<br />
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.<br />
<br />
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 :)<br />
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 :)....<br />
<br />
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!)....<br />
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.<br />
<br />
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.<br />
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........<br />
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.<br />
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.<br />
<br />
I don't know <b>why</b> 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 :)<br />
Thank you both for coming all that way just to check up on me - much luv to you both xx<br />
<br />
<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com15tag:blogger.com,1999:blog-2044339197163784788.post-21039272067780953232012-01-20T00:26:00.000+00:002012-01-20T00:26:02.497+00:00Bloods, Drugs and 'no Side Effects'.......Me again :) I'm BACK just as I said I would be - lol......
<br />
<br />
So to recap on the last 10 days or so..<br />
<br />
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 <b>must</b> check things like your calcium levels, kidney function and make sure that the white cells are behaving themselves beforehand.<br />
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).<br />
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?<br />
Her reply was firstly to look at her fingernails in deep thought followed by a long sigh and then.....No.....<br />
<br />
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 <b>lot</b> 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.<br />
It just makes you feel <b>so so</b> cared for in this place!<br />
<br />
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 <b>should</b> be possible to help people in genuine need of assistance.<br />
<br />
Anyway, her name is C, she's lovely and she'll be my guide on pain management now until the end.<br />
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.<br />
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.<br />
<br />
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.<br />
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 :)<br />
<br />
So, that was Monday.<br />
<br />
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.<br />
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 <u>know</u> 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.<br />
<br />
During this first infusion I asked her 'What are the side effects of this drug?'....she replied 'None'.<br />
Hmmm, that's definitely NOT what the manufacturers website says - so, me being me, asked some more questions. 'Are you sure, <b>all</b> 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 <b>anything</b> to watch out for! <br />
<br />
<br />
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?<br />
Hmmm, I'll be doing something about this nearer the time but it <u>never</u> ceases to amaze me how much I've had to educate <i>myself </i>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.<br />
<br />
<br />
Tuesday evening I still had a strange taste in my mouth, but nothing untoward was happening.<br />
<br />
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 :)<br />
<br />
<br />
<b>Going to break the rest of what's been happening down into other posts - or this one will end up just too long</b><br />
<br />
<br />
Here's a couple of pictures that Sarah took whilst we were in the unit.....<br />
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<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU4Bmeg2m-oji394CrRad17RWWt_S0by50TyH7UFZ_x1qRXVQnru-FpF-_C9whOSnOd5nwkPbu3UJ_zaLLvD5YEmUxZKqjX0juXsgp5Yf5h4QDaunn5ke-1-eP_BHu2f6flJRStunIuBKa/s1600/infusion+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU4Bmeg2m-oji394CrRad17RWWt_S0by50TyH7UFZ_x1qRXVQnru-FpF-_C9whOSnOd5nwkPbu3UJ_zaLLvD5YEmUxZKqjX0juXsgp5Yf5h4QDaunn5ke-1-eP_BHu2f6flJRStunIuBKa/s400/infusion+1.jpg" width="300" /></a>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjag5d0emz5dJJ7yjqnno1InDLjpuZHdiHM4GF3LhRSIyGqvXPTDStqKWT9AZGEnJAkA1Z6xRuyEpvOufDujUbqUw6a7CEbe2SNZYuogzWTit-Su2UEod1GuPbD6tlexHk8QVcKsZWapJyp/s1600/infusion+4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjag5d0emz5dJJ7yjqnno1InDLjpuZHdiHM4GF3LhRSIyGqvXPTDStqKWT9AZGEnJAkA1Z6xRuyEpvOufDujUbqUw6a7CEbe2SNZYuogzWTit-Su2UEod1GuPbD6tlexHk8QVcKsZWapJyp/s400/infusion+4.jpg" width="300" /></a></div>Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com7tag:blogger.com,1999:blog-2044339197163784788.post-56887085249511698092012-01-07T23:53:00.000+00:002012-01-07T23:53:33.513+00:00In a calmer place.............:)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.<br />
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....<br />
<br />
So, my immediate aim now is to get some relief from this ongoing pain.<br />
<br />
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.<br />
<br />
Monday morning I need to get bloods done to make sure they can go ahead with the infusion on Tuesday.<br />
<br />
On Monday afternoon I'm seeing a Macmillan nurse at home - she will be sent from Trinity Hospice (gentle reminder that <b>all</b> 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)...<br />
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.<br />
<br />
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<br />
<br />
<ul>
<li>Flu type symptoms, (high temperature chills and muscle pain)</li>
<li>Drop in calcium levels</li>
<li>Red or sore eyes</li>
<li>Anaemia (symptoms include feeling very tired and breathless)</li>
<li>Headaches </li>
<li>Feeling nauseas and vomiting</li>
<li>Osteonecrosis - previously healthy bone tissue in the jaw becomes damaged and dies</li>
</ul>
<br />
and wait for this next one..........<span style="font-size: large;">so</span> funny......<br />
<br />
<ul>
<li>INCREASED BONE PAIN !!! ............lol, good job I'm back in my calm place so I can find the humour in that one :)</li>
</ul>
<br />
<br />
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 :)<br />
<br />
I've decided to resign from acting in films, but I'll leave you with a famous actor's quote........<br />
<span style="font-size: x-large;">"I'll be back"!!! </span><br />
<br />
<br />
Much luv and catch up soon xxXXxx<br />
<br />
<br />
<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com16tag:blogger.com,1999:blog-2044339197163784788.post-2112228392602679572012-01-05T23:13:00.002+00:002012-01-05T23:13:54.603+00:00Starring role in a film now.........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!<br />
<br />
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 <b><u>but</u></b> 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.<br />
Fuck that!........I lost 9 months <b><u>by just going to bed one night</u></b> - 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.....<br />
<br />
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.<br />
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.<br />
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!<br />
<br />
I make no apologies for using this language - what I've said <i>off</i> 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 <b>not</b> feel like swearing about this bastard cancer.....<br />
<br />
More when I'm in a calmer mood I think :)<br />
<br />
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.<br />
<br />
Back soon with a more informed and less abusive update :) xxXxx<br />
<br />
<br />
<br />
<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com22tag:blogger.com,1999:blog-2044339197163784788.post-30119412715573434872012-01-04T00:02:00.001+00:002012-01-04T00:02:13.695+00:00This really says all that I want to say for now......<br />
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Fuck <b>you</b> cancer, you bastard!Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com15tag:blogger.com,1999:blog-2044339197163784788.post-72440497226488955112012-01-03T00:59:00.000+00:002012-01-03T01:03:11.314+00:00'We Ruled Cancer'.... Christmas 2011.........Firstly, many thanks to Alice for the idea of the post title - it works perfectly :)<br />
<br />
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 <b>weeks</b> anyway, always, but this year I was down to the last few <b>days</b> then I motivated myself to get a few things done. Somehow, we pulled it off :)<br />
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.<br />
<br />
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 :)<br />
<br />
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 :)<br />
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<br />
<br />
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 :)<br />
<br />
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 :)<br />
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.<br />
<br />
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 :)<br />
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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).<br />
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 :)<br />
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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 :)<br />
<br />
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'...<br />
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...<br />
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Catch up soon - and again, Happy New Year to all of you. Massive thanks for <b>all</b> the support over the past year, it's been so appreciated.<br />
Also BIG THANKS to <b>everyone</b> that has donated to Trinity Hospice - thanks to Running Man (you know who you are) today I reached my target of £500....<br />
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.<br />
<br />
(Mum took some photo's over Christmas which I'll add to this post tomorrow evening).Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com14tag:blogger.com,1999:blog-2044339197163784788.post-18896031063153525202012-01-01T23:32:00.000+00:002012-01-01T23:32:01.692+00:00Happy New Year to allJust a quick post to wish you all a very Happy New Year.<br />
<br />
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.<br />
<br />
Much luv xxXxxCarolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com5tag:blogger.com,1999:blog-2044339197163784788.post-79569584945290598212011-12-20T00:16:00.002+00:002011-12-20T00:45:59.315+00:00Thanks 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.<br />
Tonight I've set myself the task of bringing you all up to date.<br />
<br />
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.<br />
<br />
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.<br />
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!<br />
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.<br />
He told me that in his opinion chemo could potentially <i>possibly</i> provide me with some extra 'weeks' but it <u>would</u> 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.<br />
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.<br />
<br />
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.<br />
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 <b>estimate</b> at this stage.<br />
I want to be around for Dj's 13th birthday, if possible, so that gives me hope that that might be achievable (if things <u>don't</u> change overnight) :) <br />
<br />
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.<br />
<br />
I'm meeting with Dr L, Oncologist again on 3rd January - then have a colorectal appointment on 4th January.<br />
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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.<br />
<br />
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.<br />
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.<br />
<br />
Catch up soon xXxCarolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com42tag:blogger.com,1999:blog-2044339197163784788.post-73158466877230741362011-12-03T21:58:00.001+00:002011-12-03T22:51:14.826+00:00A frustrating week all round........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.<br />
The pain 'has' diminished <i>slightly (</i>and I do mean 'slightly<i>')..</i> 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!<br />
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!<br />
<br />
But being realistic, I guess I just have to be happy that I <b>can</b> cope with the pain and it might still reduce a little over the next week or so - hopefully.<br />
<br />
Apart from that, lots has happened.<br />
Had a follow up with palliative care for pain relief tweaking. Next appointment mid December to see how I'm getting on with that.<br />
<br />
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.<br />
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 <b>why</b> you're here.....you don't have breast cancer'!<br />
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.<br />
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 <b>are</b> you here today?'....<br />
Told her she's the Doctor and <b>she</b> should know why <u>they'd</u> 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.<br />
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.<br />
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).<br />
So, dismissed from the Breast care team and once again wondering where do I go from here. That was my Wednesday morning.<br />
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.<br />
<br />
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 <u>want</u> 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).<br />
<br />
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 <u>after</u> 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.<br />
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 :(<br />
<br />
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.<br />
**<span class="Apple-style-span" style="color: blue;">see my note at the bottom of the page for other info about Beating Bowel Cancer..........</span>..<br />
<br />
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 <u>spinal mets</u> 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.<br />
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 <b>wasn't</b> 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.<br />
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.<br />
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.<br />
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It's been a crap week to be honest - but I'm okay again now :)<br />
<br />
** <span class="Apple-style-span" style="color: blue;">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..</span><br />
<span class="Apple-style-span" style="color: blue;">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.</span><br />
<span class="Apple-style-span" style="color: blue;">Personally I can't praise them enough - they are the most helpful, understanding and supportive group of people ever. </span><br />
<span class="Apple-style-span" style="color: blue;">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....</span><br />
<span class="Apple-style-span" style="font-size: large;"><a href="http://www.justgiving.com/BobSelfeDecembeard">http://www.justgiving.com/BobSelfeDecembeard</a></span><br />
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Much luv and catch up soon xxXxx<br />
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<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com15tag:blogger.com,1999:blog-2044339197163784788.post-16199281805111089432011-11-24T15:03:00.001+00:002011-11-24T15:10:35.220+00:00Trinity HospiceSome 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.<br />
<br />
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.<br />
<br />
It is a service that at some point in the future I <b>will</b> be depending upon, so by helping them you're helping me - in the long term :)<br />
<br />
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.<br />
Remember one less pack of cards or one less roll of wrapping paper = a small donation to the Hospice<br />
<br />
Many thanks again xxXxxCarolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com1tag:blogger.com,1999:blog-2044339197163784788.post-31872307106362804292011-11-20T23:00:00.001+00:002011-11-20T23:29:32.685+00:00Radiotherapy done .........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.<br />
Hopefully in about 10 days I'll be back here saying 'Wow! out of pain and feeling good' :)<br />
<br />
Other news:<br />
<br />
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.<br />
Planning on also getting into work this week - pain permitting.<br />
<br />
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.<br />
<br />
Have now had a chat with Dj about the latest developments. He handled it really well, didn't cry just said he hates f*&$ing cancer and no, I didn't tell him off for swearing either! Bad mother eh :)<br />
<br />
I told him because he asked about the amount of hospital appointments I've had recently and because he was already aware of the intense pain I was in every day recently. He knew I'd been off work again for the past two weeks and asked me at the end of last week what they were doing at the hospital about my back.<br />
I told him that I was going to have 5 sessions of Radiotherapy to see if it could ease the pain....he seemed to just accept that and said he hoped it would help.<br />
<br />
Around 5 minutes later he came back and said 'If you're having Radiotherapy does that mean the cancer is now in your back?'.....I told him that Yes, it was now in my spine and it was this that is causing the pain...He said again that he hoped it would help, then he stared me straight in the eyes and said 'This means you're terminal now then'........<br />
I said what it means is that they can't cure the cancer now, but there are things they want to try - such as Radiotherapy and a drug that will help repair the bone damage...<br />
He then said that if I was 'terminal' then that meant I'd die.......<br />
I told him that Yes, it does mean that, eventually - eventually this cancer will 'get' me and yes, I will die BUT not today, I told him I'm not going to go to bed tonight to die (well, at least that's not the plan so far) but that eventually, in the future, they would have to say there wasn't anything left to try and THEN we can worry about terminal. He asked me to promise that when they say this I tell him and don't pretend things are okay...I agreed. He didn't cry but I could see that he was struggling not to :(<br />
This was when he said he hated f*&$ing cancer and I didn't reprimand him for it. Like I said, bad mother but I'm the best he's got :)<br />
<br />
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 <b>happy</b> and showing no signs of being overly stressed at the moment. So, all is good here.<br />
<br />
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.<br />
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.<br />
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!) <br />
I hope one day he reads my blog and realises how much I did appreciate him :)<br />
<br />
Catch up soon xx<br />
<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com10tag:blogger.com,1999:blog-2044339197163784788.post-88557620167638990422011-11-13T00:37:00.001+00:002011-11-13T01:31:01.190+00:00Next Steps on the long winding road.........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.<br />
<br />
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.<br />
<br />
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'.<br />
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.<br />
The purpose of Radiotherapy is to reduce the 'mass' as much as possible and repair the damaged bone in that area.<br />
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.<br />
<br />
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.<br />
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.<br />
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 <a href="http://www.cyberknifeservice.com/how_CK_works.html"><span class="Apple-style-span" style="color: blue;">CyberKnife</span></a><br />
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.<br />
<br />
After the Radiotherapy, they are interested in using <a href="http://www.mhra.gov.uk/Safetyinformation/Generalsafetyinformationandadvice/Product-specificinformationandadvice/Product-specificinformationandadvice-A-F/Bisphosphonates/index.htm"><span class="Apple-style-span" style="color: blue;">Bisphosphonates</span></a><br />
<br />
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.<br />
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 :)<br />
<br />
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.<br />
<br />
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 <i>should</i> reduce dramatically or even disappear for a time.<br />
<br />
Following Monday I have a follow up with palliative care. Then a further appointment with BC team on 30th November.<br />
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.<br />
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I just want this ongoing pain to give me a break now. I'm totally fed up with it...........<br />
<br />
<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com19tag:blogger.com,1999:blog-2044339197163784788.post-78495252394781221412011-11-07T23:03:00.001+00:002011-11-07T23:03:12.279+00:00Fundraising for Trinity HospiceI just wanted to say a quick thank you to all those who have donated to my chosen charity Trinity Hospice.<br />
<br />
Every single pound donated gives me a reason to say <b><i>Yeah F*&k <span class="Apple-style-span" style="font-size: large;">you</span></i> cancer.</b>.....I'm now up to 387 <b><i>F*&k <span class="Apple-style-span" style="font-size: large;">you</span>'s</i></b> so far....I've plenty of breath left to add on more :)<br />
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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?<br />
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Again, many thanks to all those who have donated - and here's hoping for many more <b><i>F*&k <span class="Apple-style-span" style="font-size: large;">you</span> cancer</i></b> opportunities.<br />
<br />
xxXxxCarolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com4tag:blogger.com,1999:blog-2044339197163784788.post-60675554055527380212011-11-05T17:50:00.003+00:002011-11-05T17:51:03.800+00:00Biopsy Day.......Spinal biopsy day was Thursday...it feels like lots happened in just a week :)<br />
<br />
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.<br />
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.<br />
<br />
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!<br />
<br />
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.<br />
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.<br />
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.<br />
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.<br />
<br />
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 '<i>Amazing, all gone</i>' :-))<br />
Now THAT would be a nice post to write for sure :)<br />
<br />
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.<br />
<br />
Apart from that I have an outpatients appointment with the palliative care team on Monday to discuss tweaking pain meds and such stuff.<br />
<br />
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 :)<br />
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!<br />
<br />
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'..<br />
Big hope for no pain soon so I can do <b>exactly</b> that :)<br />
<br />
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 :-))<br />
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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.<br />
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Catch up soon - much luv to all xxXxx<br />
<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com13tag:blogger.com,1999:blog-2044339197163784788.post-69881335842433079082011-10-31T09:39:00.000+00:002011-12-03T22:57:09.710+00:00At last....some positive news :)I don't have Breast cancer :)<br />
<br />
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.<br />
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.<br />
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.<br />
<br />
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.<br />
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.<br />
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 <b>highly</b> 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 '<i>NHS resources are now at my disposal '</i>....:)<br />
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.<br />
<br />
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.<br />
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!<br />
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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.<br />
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<br />
<br />
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 <b>was</b> concerned about this I would have been admitted on Friday. However, so far things are 'okay'...<br />
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.<br />
<br />
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.<br />
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 <b>can</b> do rather than what they <b>can't</b> do.<br />
<br />
I got home just after 6pm after being at the hospital from 10am - so a very long, but extremely productive day.<br />
<br />
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 <b>are</b> 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!.<br />
<br />
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.<br />
She then asked if I wanted to know <b>what</b> I was booked for and then told me that it was for a spinal biopsy.... GULP...really scared now!<br />
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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 <b>is</b> less than it was prior to Friday.<br />
I'm meeting again with the Palliative care team on Monday next week to see what needs some more tweaking med's wise.<br />
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.<br />
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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 <b>can</b> now sleep without being in constant agony - and it's been MONTHS since I last managed to sleep without pain.<br />
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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!<br />
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Keep things crossed for me eh? Much luv xxXxx<br />
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<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com19tag:blogger.com,1999:blog-2044339197163784788.post-22860347026006716292011-10-20T00:14:00.001+01:002011-12-03T22:58:46.885+00:00So.....what now?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.<br />
Immediately I knew this was going to be <i>dodgy</i> 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 <i>other</i> voice starts hearing the conversation that is pending.<br />
<br />
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.<br />
<br />
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.....<br />
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.<br />
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.<br />
<br />
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 <b>can</b> do to regain some quality of life.<br />
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.<br />
<br />
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..<br />
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How do I feel? Pissed off with it all to be honest - but I DID expect this result.<br />
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).<br />
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 <b>after</b> 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.<br />
No such luck eh :)<br />
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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.....<br />
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Bastard cancer!<br />
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Catch up soon xx<br />
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<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com28tag:blogger.com,1999:blog-2044339197163784788.post-50060603920616436222011-10-12T00:28:00.001+01:002011-10-12T00:28:52.529+01:00Bone Scan........Done......<br />
<br />
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.<br />
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.<br />
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Now I've just got to wait for the results - which the very nice Bone scan man said would be done 'asap' for me.<br />
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Fingers crossed for the best possible outcome :)<br />
<br />
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.<br />
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'......<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqzHKBkXsv5QE80aqXtt1Ld5vStgdvxEkjs9oFahHpe6VYd9elDr2-bmfSEyHPOUbtba9Bmp-DJPu67Tzwi0FR1sMZxCpXaFOpkgjhXgBRN9XvAjFnf4nG0NlBlYpg77Dq61KQIEvaBQdb/s1600/180px-Nl_bone_scan2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqzHKBkXsv5QE80aqXtt1Ld5vStgdvxEkjs9oFahHpe6VYd9elDr2-bmfSEyHPOUbtba9Bmp-DJPu67Tzwi0FR1sMZxCpXaFOpkgjhXgBRN9XvAjFnf4nG0NlBlYpg77Dq61KQIEvaBQdb/s1600/180px-Nl_bone_scan2.jpg" /></a></div>
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Just to add, this picture above isn't REALLY me - this is just an <i>example</i> of what you see after a bone scan....:)<br />
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Much luv<br />
xxXxxCarolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com11tag:blogger.com,1999:blog-2044339197163784788.post-73335251228705083242011-10-09T00:29:00.000+01:002011-10-09T00:29:44.694+01:00Can you trust your Doctor?........This was the title of the Dispatches programme on Channel 4 this week 'Can you trust your Doctor?'..<br />
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Worth watching if you missed it - available here....... but I think you do have to be UK based to view<br />
<br />
<a href="http://www.channel4.com/programmes/dispatches/4od">http://www.channel4.com/programmes/dispatches/4od</a><br />
<br />
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 <b>no</b> help at all.<br />
<br />
'Anthony' went undercover to film one particular GP. This GP had been investigated in the past (2006) for failing to spot cancer...<br />
'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.<br />
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.<br />
<br />
<br />
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.<br />
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.<br />
The GMC (General Medical Council) asked the GP to 'amend and improve practices'....<br />
<br />
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.<br />
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.<br />
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....<br />
<br />
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.<br />
A three year old child died after the doctor on call did not attend to him adequately - the coroner reported '<b><i>failure to provide basic medical attention was total and complete. There was a clear causal connection between this gross failure and Joseph's death</i></b>'...<br />
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.......<br />
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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 <b>will</b> leave thinking 'I'm <i>now</i> sure'......<br />
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<br />Carolehttp://www.blogger.com/profile/11470170206537639792noreply@blogger.com9