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.