10 July 2010 – The Good News and the Recovery (Cancer and Me 14)
I had a CT scan in between the 4th and 5th cycle of chemo, which was to check that the treatment was having the desired effect. That showed encouraging signs. In fact there was not much left of the enlarged lymph nodes that had been visible only 4 months earlier. One other thing they spotted was the absence of the stent that had been inserted into my bile duct in December! I was supposed to have another ERCP to remove that, which I hadn’t been looking forward to. But it appeared to have dropped out and passed naturally out of my body. It wasn’t supposed to happen, but it saved them a job and it wasn’t a problem!
A few weeks after the final chemo session I was booked to go to Guildford for a PET CT scan to confirm the final analysis of whether I was definitely in remission or not. A PET CT scan is a special (expensive) scan that involves injecting certain radioactive chemicals that can show up whether cells are active or not. In my case the reason they particularly wanted to see that was because they still were not sure about the legions on my liver. These did not appear to have changed at all in the ordinary CT scan. They had originally assumed these to be lymphoma, although they couldn’t conclusively tell. The only way they could get a better indication would be to see if they showed up as active. If they were inactive they were most likely to be benign cysts.
The good news was that those ‘spots’ or ‘shadows’ on my liver showed up as inactive, and so they concluded that they were never lymphoma in the first place. That means that my staging was, in reality, 3b, not 4b.
The main good news, though, seven months after being admitted to hospital urgently, was that they confirmed that I was “in complete remission”. They could no longer detect any traces of the cancer. What a relief! Praise God!
Of course, cancer being what it is, they can only call it ‘remission’. They do not talk about being cured until you have been in remission for several years. Apparently if you have been in remission, with non-Hodgkins anyway, for 6 or 7 years, then you are statistically just as likely to have a relapse as anybody else is to be diagnosed first time. So you can effectively say after 10 years (to be safe) that you are cured. (Never got that far in my case, but that’s for later in the story!)
Then comes the difficult bit. It might be surprising to call it that, but recovering after treatment is difficult. The consultants start with monthly check ups, which soon reduce to quarterly, and then after a year or so go down to every 4 or 6 months. But how do you cope with feeling less than 100% and still not being able to work when you don’t have any treatment or tests to ‘look forward to’. It’s like freefall.
When you have appointments and treatments and tests booked in the diary you have a schedule, and you feel like your illness is being dealt with. After that, you psychologically feel like you should be better. ‘They’ve said I’m better, so why don’t I feel better?’ Rationally, of course you shouldn’t expect that months of deliberate poisoning should flush out of your system immediately, but there is nothing to focus on. Increase exercise and do what you feel able to, they say. But is there a danger of overdoing it? Apparently not. If you overdo it, you just feel washed out and tired and you have to rest and try again a bit later.
For me, my legs kept aching even while my hair was returning and my weight was (unhappily) coming back up. And towards the end of 2010 I started feeling stomach pains again. I spoke to the GP and my consultants about it. Heidi was worried again, and I couldn’t explain it. Perhaps the chemo had slightly damaged my gut, or I had an ulcer, or something. Surely the lymphoma couldn’t be back that quickly. The consultants were pretty confident that it wouldn’t be the latter, because that would be very uncommon (sound familiar??). But they always take cancer patients seriously, so I had an endoscopy and a CT scan, neither of which showed anything to worry about.
All that made it too uncertain to put myself back into the job market. While the doctor was happy to keep signing me off work, so that I could continue to get benefits, and while CABA was happy to keep funding me, I made the cautious decision to stay away from work until I was absolutely confident that I could get back into it properly.