This blog has been a long time coming. I've been roaming around this site, making the odd comment in the anal cancer (AC) group and in the incurable cancer group, but don't feel I quite belong in either, hence my decision to start a blog. The people in the anal cancer group are all going through treatment the first time around, so I don't feel I'm really much help to them because my treatment failed. So then I searched for people with metastatic AC and found two, including the very first person to join the incurable group, but sadly they had both died. This was quite hard to take, as I had been looking for someone to talk to who had the same experience as me. When AC returns, it's usually pretty aggressive. Mine is not. According to my onc it's 'lazy'. Why this is, I don't know, though I have my theories (for another time).
I was diagnosed with squamous cell carcinoma of the anus in November 2010, not long after my 60th birthday, after 60 years of extremely good health. A bit of a shock, of course, as it is for everybody. I endured the chemoradiation and came through it surprisingly well. But my cancer had been stage IIIb and was already in lymph nodes around the pelvis. My oncologist didn't make much of this, but I knew the statistics, so it shouldn't have been a surprise when it turned up again, this time in a para-aortic lymph node next to my right kidney. This was in March 2013. My first question was 'can I still go to Nepal?' I had booked the trip of a lifetime to go and trek in the Himalayas that April and see Mount Everest, To do him credit, my onc replied 'I don't see why not', so I did and it was wonderful. I won't detail the bathroom problems, as my bowels had never recovered from the radiotherapy, and the sanitary arrangements in Nepal are not great, but I managed. And I didn't tell anyone in the group about my cancer until the very last night, so no one treated me as special, which was also great. When I returned home, it was to discover that I had finally got the referral I'd asked for to see Dr Andreyev at the Royal Marsden who specialises in post-radiotherapy bowel problems. Of course by then I had other things on my mind, namely the returned cancer, but underwent all the tests they offered anyway. The only thing they found wrong with me was small bowel bacterial overgrowth, which is apparently very common after pelvic r/t. I was treated with 3 different antibiotics, but sadly they didn't seem to make any difference.
Anyway, but now I'd come to the conclusion that my local oncologist really didn't know anything much about AC, and certainly not about recurrent AC. He'd only had one patient in whom it had returned, and that was 12 years ago. She refused treatment and died - that wasn't exactly encouraging. So I duly asked for a referral, having done my homework, to Dr Saunders at The Christie. And I'm so, so glad that I did, even though it's 2.5hrs from where I live. I have nothing but praise for the team there, and I feel that my treatment is really personalised to me. They did more scans etc and informed me that whereas my local hospital had only identified one enlarged lymph node, there were in fact two other largish ones. One was in my neck, which by then had in fact become visible, and the other in my pelvis (so not only had the chemo not worked, the pelvic r/t didn't work either). They advised that, because it was slow-growing, I had the option of just watching and waiting, which we did for a few months until a scan in September showed that things were moving, albeit still slowly.
To cut a long story short (these cancer journeys are so long, aren't they, with all the appointments, scans, treatment etc etc) I had a week of radiotherapy on the lump in my neck in October (which worked - it's gone!), and then started 6 months of Capecitabine with 6-weekly injections of Mytomycin. I've been doing OK until recently, when I've had two bouts of really, really excruciating constipation - swollen abdomen (I look pregnant!), abdominal pain, feeling like I had a rock in my back passage, having the urge to 'go' every 5 minutes, no sleep. Both times, after consultation with the Christie hotline (fantastic service), I've dealt with it with 8 sachets of Movicol over 6 hours, then I get 24 hours of excruciating diarrhoea. I can actually put up with the latter, but the constipation really, really gets me down. To the point where I feel I can't go on with the chemo. I guess this last bout, being only a few days after my last Myto injection, results from that, but I can't be sure. I'm due a CT scan on 11th Feb and will get the results on 20th so will be able to discuss with Dr Saunders whether I have to carry on or not.
Well, that's it for now. I'll try and keep this up on a roughly weekly basis, but I would appreciate any comments, particularly on how people deal with constipation/diarrhoea, and how you get over the desire to just stop, stop, stop this dreadful treatment. If I do stop it, what else is there?
