It feels a bit funny writing this blog, which will be seen by strangers and the few of my friends whom I've told about it, rather than giving my news to my family and friends first. When the news is not good, you're not exactly in a tearing hurry to impart it to all and sundry. But I want to talk about it, which is where this blog comes in helpful. And I don't really mind if no one reads it!
I had a CT scan last Monday at the Christie. I was in a lot of pain that day, and had had 6 days of horrible constipation in spite of taking laxatives. I phoned my colorectal nurse (had to leave a message) and also the hotline asking for help. Got a dusty answer from the hotline. 'You're not on chemo so it's not our business' (excuse me? I thought the hotline was for all patients of the Christie) 'Go to your GP' was their response (I forbore to point out that I was in Manchester and my GP is in mid-Wales). So by the time I reached the hospital I was really pretty distressed. I won't bore you with the details of that day. Everyone I met tried to be helpful, but no one could find a doctor to see me. My consultant, Dr S, was away, the promised registrar never answered her page or her mobile, and as the evening wore on, the duty doctor was just too busy. I couldn't believe that you could spend all day in pain at a top cancer hospital of which you are a patient, and not see a doctor. But that's what happened. I had to take the train home to Wales eventually, still in pain and acute discomfort, and see the GP the following morning, who sorted me out, to some extent and temporarily.
Then this Monday I had a call from my nurse. Could I come up to the hospital on Weds (yesterday) to see Dr S instead of next week, when my appointment was booked for? Of course I could. Although I was expecting bad news, it didn't really occur to me that Dr S thought it sufficiently urgent to get the wheels in motion right away. John and I went up on the train (thus losing the money we'd already spent on advance (ie non-refundable) train tickets for next Thurs, but hey, what's a few quid compared to what this illness has already cost us so far?)
Well, the news was indeed grim. Since coming off the chemo in May and the subsequent scan in June, all my marker lesions have grown. By my calculation their combined volume is triple what it was three months ago - but I was never very good at maths. The one near my kidney (retroperitoneal, or inter-aortocaval node (why all these fancy names?)) has directly infiltrated the L2 vertebra behind it, destroying half of it. This was a real shock, but it certainly explains my constant back pain. And a lot of my tummy pain is probably actually cancer pain, as Dr S explained that there are other lesions in there that are not actually being measured. He had a feel of my tummy and drew me a diagram to show why I have pain in certain places.
He obviously had a clear idea of what he wanted to do, whereas I barely had time to think. The best thing is that he put me on slow-release morphine, so that from now on I will have constant background pain control, as well as the odd shot of quick release Oramorph when I need it. This is a huge relief, and it's also a relief knowing why I've been in so much pain. It helps you to bear it somehow.
Dr S also wanted to treat the retroperitoneal lesion with radiotherapy - 5 fractions next week, with the planning scan right after he'd finished with me. Before I even knew it, I'd signed the consent form. Of course he's right to want to do that, if it's going to shrink the b****r and help with the pain. Next he wants me to go back on the chemo for, I suppose, another 8 cycles. I said I couldn't decide on that at present, but I guess I'll go along with it. He pointed out that I'm in worse shape now than I was on the chemo, so why not have another go? It's just that I find it so hard to start filling my body with poison again. Especially when I know it's only going to keep further deterioration at bay rather than getting rid of it altogether.
Final shock: Dr S does not want me going to Canada, which I'd booked to do on 25th Sept. Especially as my travel insurance doesn't cover the cancer. He pointed out that I would still be suffering the effects of the r/t, and what was the point of going over there to see my family and then being ill? So could I delay the treatment until after Canada? I asked. He didn't seem to think that was at all a good idea. Then he told us a horror story about a patient of his in a similar situation to mine who had gone to Canada anyway, had to be hospitalised when he was there and landed up paying £40,000 for the privilege! We really, really couldn't afford for that to happen....
John suggested to me privately afterwards that I defer the decision about Canada until after the r/t, so I can see how I am then. When I got home I dug out my diary from the first time I'd had pelvic r/t (and that was 35 fractions). After a week of that I was still functioning normally, as I was after the week of r/t on my neck last autumn. So maybe I'll be OK. There's nothing to be lost by delaying the decision. I'm going to lose the money anyhow if I don't go.
While John was off at the pharmacy getting the morphine, I asked Dr S how this new information affected my life expectancy (don't they just hate that question?) He thought, not much, given that I'm 'well' at present. I certainly look well, but if anyone looking at me had any idea of the hell I go through dealing with the wretched bowel problems on a daily basis, they wouldn't exactly say that I was well. I had been meaning to ask Dr S about the promised referral to a gastro-enterologist, but John and I were both in shock, I think, and we completely forgot. His message re bowel management was, basically, do what you think best (!)
So off we went and had lunch at Carluccio's with a very large glass of wine each. I made the resolution there and then to live each day as it comes. And sitting there in that mellow September sunlight, quaffing wine and eating bruschetta with my dear husband, I thought that life still has a lot to offer. I'll worry about the r/t next week, and the chemo when it happens. Sufficient unto the day is the evil thereof and all that.
