Cancer 220

A day with developments. I am unsure whether to call them good or bad, positive or negative. I think I am losing the ability to judge right from wrong. I was at the hospital today to see the consultant. Fortunately, I saw the main consultant, not the person I had last time with whom I found it difficult to communicate, not because of language, but because of culture. It was very difficult and I might come back to it sometime.

There were several new items at the meeting today. The main one was that I have been referred to palliative care. This gave me a strange feeling that lasted much of the day. Logically, what is the problem? I have been on palliative care for a couple of years, but there is being on palliative care and there is being on palliative care. Up until recently, I have sort of blinded myself to the idea of death. The treatment was working. I knew it would fail but I ignored this knowledge. Simple avoidance. We all do it. Today, during a discussion of pain management the consultant suggested I should be referred to the palliative care team. There is good reason for this. They are experts at managing pain (I hope), though I am not sure about some of their other activities. Later I checked and they do things like counselling – no thanks, tried it once and there was no point – and bereavement advice, both for the person dying and their family. I wonder whether I should go to bereavement therapy to mourn the loss of myself. Not much point really apart from the potential philosophical discussion about the meaning of death, and I have had that conversation plenty of times with plenty of people and I don’t need to have it again.

Where was I? Oh yes, being referred to palliative care tells me that I am now officially a dead man walking. People can tell me until they are blue in the face (!) that someone can be on palliative care for months or years. I know the reality is that this is the last gang in town (The Clash, Sept 1978, 2nd album, Give ’em Enough Rope). There is no NHS beyond palliative care. They provide the event horizon over which I pass into the black hole of oblivion. I have palliative care and then I die.

My morphine prescription was increased again.

I asked for clarification of the results of my CT scan, as the results were not explained to me on the previous occasion. Apparently I have new lumps and overall growth of over 20% indicating that the previous treatment was not working properly and it was time to move on to the next one. I say next one because I found out today that there are further forms of chemotherapy after this, but I also got the clear message that they are not going to work very well or for very long. My first treatment lasted over two years, which was pretty good going. This treatment may last six months, or on some occasions (me, folks) up to a year. After that these other forms of chemotherapy may provide a little more time, or not. But I read about this a couple of weeks ago, where the evidence shows that people in my position have around a year to live on average (11-15 months). I am not sure what proportion of my remaining life will be bearable and what proportion will be horrid, but I would like to emphasise here again that once it becomes horrid I would like someone to provide me with sufficient morphine or alternative to finish me off. This longwinded assisted suicide bill that is currently in Parliament with a limited chance of success is a real thing to me. It won’t be law in time but I would like to think killing poor folk like me should become easier in the future.

The current treatment may have to end because of side effects. Apart from the great long list of side-effects (think of a side effect, it is probably on the list, everything is on the list), one side effect, peripheral neuropathy, can get so severe that I may not be able to put up with it. I have had some of this before, a tingling in my hands and fingers. Apart from stopping me play the guitar (no bad thing, blah blah) it has not been particularly serious. It affects both hands and feet. I haven’t had the joy of foot neuropathy yet.

I do so look forward to side effects. They make chemotherapy fun.

On the positive side I have eaten properly today. I had cereal when I woke up, then a bacon cob in the hospital (it wasn’t good but I ate it). When I got home from the hospital I suggested that we go out for a meal. We went out to a Turkish restaurant and I ate a normal portion. OK, I didn’t have as much as I would have done, but I did have as much as a normal person would have. This is the first time I have eaten a full meal for weeks. I am now so thin that anyone who hasn’t seen me for a while will be shocked at my skinniness (OK, I am lying but I have lost a lot of weight. I was just so much overweight that losing around 15kg means that I am still very overweight). I think I will have some crisps. It is gone midnight so that makes it acceptable.

I can go back to the idea of eating out, which is a good thing, and going to stay in posh hotels, another good thing. I booked one for January. Look at me how optimistic I am that I will still be alive then.

Bugger it. While today was upsetting it is not going to get me down. Too many things to do, people to talk to, glasses of milk to drink. The ratio of crying to getting on with life is not changing yet.

The main outcome of the meeting today was that my treatment will take place on Tuesday, so another five days of not being able to open the fridge door, not going out, and not eating properly. Just when I was starting to think positively….