Finally time to update this....
I had my first chemo since surgery on 8th - 10th Feb, the fourth so far of Irene, 5FU and Folinic acid. Before I even got to the chemo suite, I spent 10 minutes sat in my car in the car park deciding if I really wanted to go ahead with it, tearful and scared that I'd end up in hospital again. Babs asked if I was happy for her to go ahead - I was pretty teary generally and Bea, the sister from the cancer ward I'd spent over a week in popped in and had a chat too. I just had a really bad feeling about it but won't be ruled by fear so agreed to go ahead. Dr Tom had dropped the dose by over 20% - the extra to take into account some weight loss.
Mandy gave me a couple of ginger biscuits for the drive home because I already felt sick. I wasn't - the anti emetics work, they stop everything moving and therein lies my biggest problem. I spent Wednesday on the sofa unable to open my eyes. The TV was on all day but I just could not keep them open for any length of time unless I was walking. It was a concerted effort to limit myself to relying on the sip feeds in the morning but making sure I had odd slices of toast or crumpets and something with protein in at the end of the day. I figured so long as I kept something in my system it would keep the stoma working rather that risk it stopping living on liquid protein feeds. As ever I still became constipated by Thursday - nothing but pellets which were infrequent, one a day. I had to ask for a lift on Thursday to get the pump disconnected and pretty much slept my way through to Sunday morning. Becky was due round Sunday afternoon so I made sure I showered (first time I was strong enough to stand long enough since Tuesday) and changed my bag - at which point I saw that the stupid thing had retracted completely inside my belly and I was just left with a belly button size hole.
I totally freaked. Started crying, knowing I'd have to go to hospital, expecting more surgery, I was already leaking what I thought was waste left from surgery (which I'd been warned about and happened for a few days in January) but then realised was coming from my general system. The colon had joined itself up inside me and was pumping everything right out of the fistula again in increasing volume - the very reason they created the stoma was to prevent this happening. Becky arrived and I'd calmed down a bit but then got into a sorry state when I told her so she rang the ward for me. After a couple of conversations back and forth they said for me to be admitted. Yet another Sunday night spent being admitted - at least it was earlier this time and by 9pm they confirmed I'd definitely be staying in as the Dr was delayed and Becky could go home to sleep knowing I wouldn't be stranded. The next few days (including Valentines's Day another anniversary of losing a baby) were spent with me having to rush to the toilet to clean myself up and wash every hour or two all day and night. It was like leaving a baby in a soiled nappy for a week - my skin was split and bleeding and sore, I was exhausted and miserable. After a couple of days with a converse bag and even more laxatives the stoma came out and started working as it should again. Now it just changes size from flush and tiny to the size of a small orange or satsuma.
My usual surgeon, Mr A was back in charge of my care and he came to see me, said "it's not a very good stoma". That's not a criticism of Mr R who did the surgery, just luck of the draw. Ten to 24% of stomas retract. If I wasn't riddled with tumours they would correct the fistula, but the surgery is major and recovery time means no chemo - more growing time for the tumours and ultimately a shorter lifespan. If it retracts again Mr A will recreate the stoma for me - but we are all reluctant to follow this course of action, again because of recovery time and there are no guarantees that it would be any better - plus it's more surgery, losing more colon.
I stayed in until Friday as I had a urology appointment, needed my line flushing and The Lone Ranger who is a ward Dr anyway arranged for me to see my oncologist Dr Tom on the Friday. I'd had a long chat with one of my stoma nurses I spoke to Bea about staying in for my next chemo. I am so scared about having another dose, unable to look after myself on my own and with constant drink deliveries and food I stood more chance of eating and drinking better and if the same thing happens again at least I'd be in the best place. Before Dr Tom arrived, Bea had already got his agreement for me so I could stop worrying. He said he had absolutely no problem at all, that I should take extra laxatives before chemo starts to clean things out and keep problems of constipation to a minimum.
I came home for the weekend, to pack properly and returned on Monday. My son came on the Sunday and my daughter on Monday so I was glad to have had the chance to catch up before I was back in.
Just as I was getting dressed after a shower on Tuesday morning, ready to go down to the suite for chemo I got the news that I was neutropenic yet again, despite the dose reduction and 5 daily jabs of GCSF to boost my bone marrow and white cells. Neutrophils were at 0.9 - they deferred me for another week. Part of me was disappointed, part of me relieved I have an extra week off the poison. My newly grown hair is already falling out again after 2 weeks.
As it's half term I've had a lot of visitors this week and mum and Peter are staying locally in the caravan. I am inundated with company - quite a shock to the system after weeks alone with very little. This weekend I have two Bum Bandits coming to stay again and the following week Hayley is over from France. I may be knackered and going to bed at 9pm every night but at least I'm doing things and seeing people, not just lying on the sofa being ill. Also the anti depressants have kicked in and taken the edge of the misery and daily tears.
I am going to force some green juice down me tomorrow - I feel sure my inability to tolerate it since I started chemo is responsible for my poor blood results. Just eating vegan isn't enough, I need the extra green! Wheatgrass I shall never be able to drink again I fear - but I'm not going to worry about that.
Thursday, 24 February 2011
Saturday, 5 February 2011
2011 4th February - One Step Forward, Two Steps Back
I went for a glass of water (I don't drink fizzy drinks or coffee) with Becky on Sunday which made a pleasant change - sitting on different sofas. Had a wander round Oldrids department store and spent money I could spend better on a new brow pencil and some pore minimiser. I also picked up a hair trimmer and cropped the stubborn original pre-chemo hairs down to the length of the new growth. There can't be much of it left to fall out. I look a bit like Sinead O'Connor.
Monday I drove the less familiar route on the new Crowland bypass to Peterborough. Strange having made the journey for so many years to work and now there's a brand new road. It just adds the the feeling that everything has changed. I picked Karys up from college and waited in the car park (illegally). It made me smile - she was keen to get out of there asap because "We're not supposed to be here". She didn't have any classes but had some extra work she couldn't do at home. I'm proud that she is conscientious enough to get up at 6 on a Monday when she doesn't need to and travel the 20 miles on a bus. I'm more pleased I'm still here to see it, that she's become the adult I hoped she would.
It was her idea we meet there - a new shop has opened up in Queensgate shopping centre that we both fancied trying out. It doesn't sell things, it sells services. Well just the one service - they offer fish pedicures. Now I'm sure if I think about it long enough I could convince myself of reasons not to do it, for the sake of hygiene, the sake of the fish etc. But I'm keen to do new things, to do anything and even better, make memories with my daughter. I couldn't care less whether it's the latest fad, what all the celebrities are doing. It's something I did with my daughter - a new thing, a daring thing, a fun thing, one she'll remember.
We had to fill in a form just in case something happened - like we dropped dead from the shock or whatever, usual procedure in salons of any sort from my experience. Luckily I didn't actually have to lie. I did put down my recent surgery but I'm pretty sure the bloke on duty had no clue what a stoma is and it wasn't on my feet! We were given clean rubber flip flops, clean towels and had to rinse our feet off before sitting down opposite each other and dipping our feet in. It was at this point I felt sorry for my daughter - I haven't shaved my legs in weeks. Mostly because there wasn't much there, but it's been growing back lately ....not pretty. I bet she was mortified! I apologised just in case... We decided it was like pins and needles - which I had thought would be the worst thing ever, bringing back memories of that foul Oxaliplatin, but since I could stop it, by removing my feet, it was fine. I still have numb or reduced feeling on my feet so I think, for a very ticklish Karys it was slightly harder to bear. Fair play to her, she kept her feet in the full 10 minutes. When we got home I realised I could have done with 35 minutes - but you can't take a chance with flesh eating fish can you - I mean if you don't like it, you'd rather lose a tenner than a £20 note?
The shop/salon has a completely glass front and as we sat down it seemed half of the shoppers in Peterborough wanted to have a nosy. For Karys who is as painfully shy, but less able to put up a front about it like I was, this wasn't good. As it was she asked to sit with her back to the window. She's still very self conscious, which people don't understand because of the way she dresses (like mother like daughter). They just see the liquid eyeliner, piercings, layers of black and home made hair coloured hair extensions (google image hair falls). She's putting on a front in that way and I totally get it. I just wish I'd been able to give her more self confidence, I feel responsible for that. She'll get better, I know she will. I just don't want her to make similar decisions to me because of it. I won't say mistakes, how can anything in life be a mistake really - if you're living? I'm not talking about crimes obviously, or being a horrible person, just decisions.
This week I didn't fall asleep, but I was still having some breakthrough pain and side pains which made me feel less than sparkling company, but no snoring at least.
Tuesday my district nurse popped round. Last time I saw her I was feeling great, hoping to reduce the dose of my pain relief. This time I was in more pain again. Such a short respite period.
Eventually Friday arrived and I was teary when my stoma nurse came to chat. She offered to come in with me for my results since I was alone, or be there for a chat when I came out. I was starting to doubt my confidence over how much they might have shrunk and dreading the possibility of continuing the planned course. If I didn't have more chemo - I still get to spend all day and night alone most of the time apart from the one day every week or two when I see one of my kids. That's what my life is now. I drag myself through each day, make myself eat, often get dressed just to stay alive for the next time I see them. I have no other real purpose. I just am. It's a pitiful existence and I don't have it within me right now to change it. I'm lost.
Dr Tom greeted me with my blood results. CEA up to 40.6. "Forty? You mean 4?". No, the last test has gone up again. To over double what it ever crept to before chemo. Showing me the increased size of my liver tumours wasn't really necessary at this point, nor the uncountable view of my full lungs - first time we've seen them in their entirety. He did point out I had over 2 months of no treatment following the July scan, then 3 chemos, then 2 months off. He asked how my mood is. I knew what was coming, so told him I cry several times a day at anything. I filled him in my history of depression and life events that added to it. He said "You couldn't make that up could you?". I left with a prescription for SSRIs again. It's been about a year since I managed to wean myself off them, or is it two years? Who cares.
I start back on the poison on Tuesday. Reduced dose plus growth hormone support to try and maintain my white cells from the start.
Why do I now feel like the end is nearer and last week I was thinking in terms of years? I had to pick up some more patches and supply of protein drinks from the surgery. The receptionist commented my payment exemption is valid to 2015. "If I'm still here" "Oh don't say that!" "But it's true...".
Monday I drove the less familiar route on the new Crowland bypass to Peterborough. Strange having made the journey for so many years to work and now there's a brand new road. It just adds the the feeling that everything has changed. I picked Karys up from college and waited in the car park (illegally). It made me smile - she was keen to get out of there asap because "We're not supposed to be here". She didn't have any classes but had some extra work she couldn't do at home. I'm proud that she is conscientious enough to get up at 6 on a Monday when she doesn't need to and travel the 20 miles on a bus. I'm more pleased I'm still here to see it, that she's become the adult I hoped she would.
It was her idea we meet there - a new shop has opened up in Queensgate shopping centre that we both fancied trying out. It doesn't sell things, it sells services. Well just the one service - they offer fish pedicures. Now I'm sure if I think about it long enough I could convince myself of reasons not to do it, for the sake of hygiene, the sake of the fish etc. But I'm keen to do new things, to do anything and even better, make memories with my daughter. I couldn't care less whether it's the latest fad, what all the celebrities are doing. It's something I did with my daughter - a new thing, a daring thing, a fun thing, one she'll remember.
We had to fill in a form just in case something happened - like we dropped dead from the shock or whatever, usual procedure in salons of any sort from my experience. Luckily I didn't actually have to lie. I did put down my recent surgery but I'm pretty sure the bloke on duty had no clue what a stoma is and it wasn't on my feet! We were given clean rubber flip flops, clean towels and had to rinse our feet off before sitting down opposite each other and dipping our feet in. It was at this point I felt sorry for my daughter - I haven't shaved my legs in weeks. Mostly because there wasn't much there, but it's been growing back lately ....not pretty. I bet she was mortified! I apologised just in case... We decided it was like pins and needles - which I had thought would be the worst thing ever, bringing back memories of that foul Oxaliplatin, but since I could stop it, by removing my feet, it was fine. I still have numb or reduced feeling on my feet so I think, for a very ticklish Karys it was slightly harder to bear. Fair play to her, she kept her feet in the full 10 minutes. When we got home I realised I could have done with 35 minutes - but you can't take a chance with flesh eating fish can you - I mean if you don't like it, you'd rather lose a tenner than a £20 note?
The shop/salon has a completely glass front and as we sat down it seemed half of the shoppers in Peterborough wanted to have a nosy. For Karys who is as painfully shy, but less able to put up a front about it like I was, this wasn't good. As it was she asked to sit with her back to the window. She's still very self conscious, which people don't understand because of the way she dresses (like mother like daughter). They just see the liquid eyeliner, piercings, layers of black and home made hair coloured hair extensions (google image hair falls). She's putting on a front in that way and I totally get it. I just wish I'd been able to give her more self confidence, I feel responsible for that. She'll get better, I know she will. I just don't want her to make similar decisions to me because of it. I won't say mistakes, how can anything in life be a mistake really - if you're living? I'm not talking about crimes obviously, or being a horrible person, just decisions.
This week I didn't fall asleep, but I was still having some breakthrough pain and side pains which made me feel less than sparkling company, but no snoring at least.
Tuesday my district nurse popped round. Last time I saw her I was feeling great, hoping to reduce the dose of my pain relief. This time I was in more pain again. Such a short respite period.
Eventually Friday arrived and I was teary when my stoma nurse came to chat. She offered to come in with me for my results since I was alone, or be there for a chat when I came out. I was starting to doubt my confidence over how much they might have shrunk and dreading the possibility of continuing the planned course. If I didn't have more chemo - I still get to spend all day and night alone most of the time apart from the one day every week or two when I see one of my kids. That's what my life is now. I drag myself through each day, make myself eat, often get dressed just to stay alive for the next time I see them. I have no other real purpose. I just am. It's a pitiful existence and I don't have it within me right now to change it. I'm lost.
Dr Tom greeted me with my blood results. CEA up to 40.6. "Forty? You mean 4?". No, the last test has gone up again. To over double what it ever crept to before chemo. Showing me the increased size of my liver tumours wasn't really necessary at this point, nor the uncountable view of my full lungs - first time we've seen them in their entirety. He did point out I had over 2 months of no treatment following the July scan, then 3 chemos, then 2 months off. He asked how my mood is. I knew what was coming, so told him I cry several times a day at anything. I filled him in my history of depression and life events that added to it. He said "You couldn't make that up could you?". I left with a prescription for SSRIs again. It's been about a year since I managed to wean myself off them, or is it two years? Who cares.
I start back on the poison on Tuesday. Reduced dose plus growth hormone support to try and maintain my white cells from the start.
Why do I now feel like the end is nearer and last week I was thinking in terms of years? I had to pick up some more patches and supply of protein drinks from the surgery. The receptionist commented my payment exemption is valid to 2015. "If I'm still here" "Oh don't say that!" "But it's true...".
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