Today was my first follow-up meeting with my consultant; ie the chap who actually carried out my surgery for me. From his perspective this was the first step in seeing how I was healing, how I was managing the ileostomy, and starting to think about my ileostomy reversal operation.
It was all of those things for me too of course, but I also went armed with an A4 sheet of questions that I wanted to discuss. I am that kind of annoying patient I guess 🙂
The basic procedure was very straightforward; a physical examination of the wound and the drain site, and then an abdominal examination, followed by a digital rectal examination. The results of this are that I am healing extremely well, that there are no signs of problems with my abdomen at all, and the join between my colon and rectum (technically a “Low Anastomosis”) is also healing extremely well, with no signs of the major narrowing that can sometimes cause problems with this kind of operation. Which is extremely positive indeed.
Probably because of those positive results we discussed the fact that I am still relatively high output on my ileostomy, and still taking both loperomide and codine to control it. An option for me to consider is taking a short break from my chemotherapy to allow the ileostomy to be reversed early. However, I don’t think I feel comfortable with the thought of stopping the chemotherapy just to make my life a little easier, at the expense of going into slightly unknown territory as far as affecting the efficiency of the chemotherapy is concerned. So although I’ll talk to my oncologist about this next week, I think I’m going to just grit my teeth and get on with the chemotherapy & management of my ileostomy, and do the reversal at the end, as originally planned.
As a short-term goal I will try to take the codine out of my mix of drugs again, and see if I can still cope, as that will definitely help improve my quality of life and hopefully aid me in getting back to work again sooner.
I then got to ask some of my questions, and found that he had removed some 25cm of my colon, that the tumour itself
is was 35mm x 40mm in size. It had been there as a tumour for at least the previous 12 months, and had probably been developing from a polyp for several years prior to that. Which is a sobering thought.
I got an outline of the on-going monitoring that I’ll need to go through (regular CT scans and then periodic colonoscopies), and of the ileostomy reversal operation (3-4 days in hospital, relatively minor operation, but with some risks from leakage, problems restarting my colon afterwards etc).
I also asked about various aches, pains and numbnesses that I’ve experienced, all of which turn out to be completely normal, though in the case of the numbness (on my left thigh) rather unusual. All will reduce or vanish to some degree over time, though as far as I am concerned, putting up with them even in the long term would still be a small price to pay to be cancer-free 🙂
I also asked about my participation in the LiveStrong event in Austin; his advice was very strongly to avoid doing it this year, and to consider doing it next year instead. Physically he felt it would be no problem, but he was very concerned about the potential for my ileostomy to start playing up, especially in high heat/humidity while undertaking strenuous activity. I’ve always said that I was going to do this treatment by the book, following my doctors advice no matter how much I disliked it. And that is still the case – so LiveStrong 2010 now looks like my target, if Mark is still interested in having a house-guest then?
The last thing I asked about was what part heredity plays in this, and whether my brother and my children will need some form of early screening as a result of my problems. It turns out that as things stand my brother should definitely have a colonoscopy as soon as possible, probably with removal of any polyps that are present, and my children should start screening (colonoscopies again) from when they reach their mid-thirties. In the longer term, this research looks like it might help target the screening more selectively. This would be good, as it could help my kids avoid any unnecessary procedures but for now the best we can do is line them all up for offers of places on an early screening programme.
Getting my brother to the doctor is likely to be more awkward. I suspect delegating that action to my sister-in-law is the correct option in this case, as he will (possibly) pay more attention to her than me.
Overall I’d class it as a really good meeting, with lots of positive news for me, and only the odd disappointment. Which is pretty good. So I’m currently celebrating with my first glass of wine since I left hospital, and then I’m going to try to get another good nights sleep!
Update: Didn’t have a very good night, and woke up with a mild hangover. Perhaps the glass of wine (admittedly a large glass) wasn’t such a good idea after all!