Discussions

Great evening down at J's last night - we watched a DVD of Best Laid Plans. I'd not heard of it before - but it was really good.

I had a long and really useful chat yesterday afternoon with I who was the man who Beating Bowel Cancer had put me in touch with. He'd had his 5FU about 3 years ago and is still clear. It was just really good to talk to someone who understands the language you're talking and the nature of the decision you're trying to make.

Main things from the conversation were:

• He'd had his chemo intravenously but weekly on one day a week over 40 weeks rather than the 5-days-a-week-in-a-month that they'e offering me. Interestingly, his was done privately ( at home too!) though Dr Dobrowski in Newcastle who regular readers might remember is the consultant who oversaw my pre-op radiotherapy. He said he found it very manageable with few side effects, except for getting very tired - and the advice that he'd got was that it tended to be a more tolerated treatment. ( This is born out by what Alison said - see below)

• He didn't work through his chemo and his feeling was that doing anything like a stressful job would be difficult while having chemo.

• We also talked a lot about colostomies/ileostomies and leakage problems. He uses a two-piece set up for his colostomy - one element of which sticks to your tummy and the other bit which is the bag itself. So when you change the bag, you just change the bag - not the whole set up - at least not every day. He says it's a lot more straightforward and, most importantly, he's not had a single leak in the last year! He gave me the contact for the firm who supplies his - but I'll also ask my stoma nurse about them as well. ( The Cohesive Rings also arrived from Denise today - I'll try those later.)
  

So - as I say, a really useful conversation. ( Thanks I. )

The other conversation was this morning with Alison the Colorectal Nurse. It's her who'll ring me for my decision on Monday but I had a few questions I wanted to ask in the meantime. Yet again, another very useful chat.

• I asked her about the possibility of having the chemo weekly, instead of monthly. She said, yes that might be possible, but they tended to recommend the monthly cycle to comparitively young patients like me, because in her view, it was slightly more effective delivered that way, although she admitted that it was a rougher ride. She said that the side effects tend to kick in towards the end of the week after actual chemo week but that generally the last two weeks are OK.
  

• She also said that most people didn't work through chemo - although she does have one patient who's a head teacher ( a comparible job in terms of stress to mine) who's working all the way through. ( Interestingly, he's on the oral form... )

• ...I asked her about that - as I've heard a lot about that from Ann in the USA who's on oral 5FU. Alison says that in this country they're only licenced to use the oral form on colon cancer patients - and as we now know, I''ve got rectal cancer... But she did say that it might be worth a conversation with Dr Coxon the oncologist about it. When oral chemo had come up in the conversation with I yesterday, he said that he'd heard that it made you very sick. Alison disagreed but said that the side effects were different - in particular, you were much more likely to get sore hands with the oral form.

• I took the chance to ask a bit more about reconnection as well - no matter when I have it. She confirmed that it's a relatively simple op but that it could take a couple of months afterwards for my bowel to settle down. Well, that bit's unavoidable I suppose - but I didn't realise that it might take that long...
  

Not sure where all this leaves me really. I think I'm still pretty much pro chemo - but I think I want to try to find out more about the oral and weekly options if they are available.

The other thing I need to think about it whether I may just have to accept that I'll need to be off work for the whole 6 months - and of course, whether my new firm will accept that . They've been great so far and confirmed just the other day that I can still join them on April 3rd - but on the sick. And of course that's just Statutary Sick Pay - so from then on I'm effectively subsidising myself from my redundancy. But if it comes down to it, I could afford to do that for 6 months. I'd just have to forget about the new car...