There – I’ve said it. There’s not much more to say, really, but I’d like to put down a bit of detail here as much for my own clarification as for anyone else who’s reading this. For one thing, every cancer case is so individual. There’s no one else who would have exactly my pathology, so in a way you could say that whatever I write here isn’t hugely helpful to others. However, it is for me, so here goes.
We were initially seen yesterday by a very nice nurse clinician. She has been working for my consultant for 20 years, yet we had never heard of her or seen her before. It only occurred to us afterwards that she is probably specially trained in giving bad news. She certainly did it very well, in a very caring and holistic way. I could not fault either her knowledge, which was extensive, or her manner. Dr Saunders did come in to talk to me, at my request, towards the end of the consultation, and my colorectal nurse was there too.
So – the scan results: The conclusion is disease progression. Well, we knew that would happen without treatment, and it’s eight months now since I had any chemotherapy. What we didn’t know was the very complex detail.
When asked what bothered me the most, I replied that it was the distended abdomen. I still didn’t get much help about this. Basically I suppose it’s inflammation caused by the hydronephrosis and apparently I also have constipation, though you’d hardly know it given my bowel habits! In fact, at the end of the consultation the only clear message I came away with was to drink more water! Since this was one of my New Year resolutions, that won’t be a problem. I’m aiming for 2 litres per day.
The nurse clinician listened very carefully to me on the subject of chemotherapy and came to the conclusion that I wasn’t exactly enthusiastic about it. She explained that I probably couldn’t have Cisplatin anyway as it’s toxic to the kidneys, and my kidneys are already up the creek. I was sent to produce a urine sample but was unable to! However, the blood test, surprisingly, showed that my kidney function is actually OK.
I very much wanted to hear Dr S’s opinion about whether I should have chemo or not. I would be persuaded by him as his expertise is the reason I chose the Christie. So when he came in to see me, I was extremely surprised to hear him say that chemo was unlikely to be of any benefit. In fact he assessed it as having a 1 in 5 chance of halting disease progression. He went further – in his opinion chemo might actually lessen my chances of staying alive longer but with serious side effects to boot. So that settled it really. Not only do I not want it, he doesn’t think it would help either.
So, we were sent away to digest this information and get a load of painkillers from the pharmacy. From now on, my ‘treatment’ will be pain relief and symptom control. And that’s it. We got the impression that the Christie is handing me over to local services such as my hospice nurse and the day hospice, which makes sense really. I can talk to my specialist nurse at Christies at any time on the phone, or ask to see a doctor, but they are no longer going to monitor me with CT scans. This we find rather disconcerting. I want to know how the disease is progressing. It was explained to us that CT scans are only of use if treatment is being given, as they can measure enlargement or regression of lesions. I’ll find out from the hospice or my GP whether I might be able to have scans locally. I want to know what’s going on.
Obviously this is a pretty emotional time, and I definitely don’t want to emote all over this blog. I know it’s now being read now by close friends and family as well as by the wider Mac community. I’ll get around to talking to all my nearest and dearest over the next few days, but first of all John and I have to process the information and its implications for how we lead our lives. On the way home in the train all I could think was ‘now we’re free. We can make plans, we can take holidays, we can have fun’. I hope that’s how we spend the next months or years – however long I’ve got (and no one can tell me that). I just want to lead a normal life but with extra treats thrown in.
Mindfulness and meditation, about which I've not written much lately (partly because I haven't been doing it every day), are going to be even more important to me from now on, so you may find me writing more about that, and about Tai Chi and the other things I do to keep myself sane and as healthy as possible. The Buddhist group I go to is meeting this Sunday morning, so that's a good place to start.
