Cancer 100

As this is my 100th blog on my cancer I feel it ought to be somehow special, but it isn’t, apart from being longer than average, sorry. While I am not sure what aspects of cancer could be special in a positive sense I don’t know. To coincide with the 100th cancer blog there are significant points around now:

• It is just over a year since I was diagnosed. That is good because I have survived a year with cancer. It is not so good because (though the reliability of the figures is poor) I was given two to two and a half years, so I am halfway through my cancer life. This corresponds well with my heart failure prediction, which also predicts death next January. Keep your diaries clear folks. Of course, apart from the unreliability of the figures, there is the argument about who wants to be average so it might not be January, in which case my apologies.
• I retired from full-time work on Wednesday, but neither the University nor the pension providers have got their act together so I have still received no money and no final confirmation of what the money will be. This is unacceptable given the circumstances in which I had to retire. ‘Hi, I am dying of cancer, can you get this sorted out pretty quickly so I get some benefits?’ ‘No, we won’t bother. Can’t be arsed.’ That was basically the response from the University, as regular readers know.
• It is my birthday this month. If you want the address for the huge presents please let me know. If it is cash (which I will have to live on with no pension) then I can send you my bank details. I thought not.

The anniversary and retirement have left me feeling somewhat vulnerable. That hard shell I try to have has its weak points. It is a little like the lining of my abdomen, pierced by the slings and arrows of outrageous misfortune. The biggest problem I have at the moment (apart from my little pet cancer cells lining said abdomen walls) is that I have a hernia around my stoma. It is getting a little big and the options are wearing a truss, which I am doing. It is not cool unless I treat it as a cummerbund, but no change there for me. Alternatively, there are two operations available. One to move the stoma and block up the current hole, the other to put mesh around the current hole and tighten it up a bit. The problem is that it is unlikely any surgeon will operate on me while I am undergoing chemotherapy. It is a little risky, but then my life is a little risky every day. One of the reasons I feel a little down at the moment is that dealing with cancer is bad enough without having to deal with what I feel should be a minor matter, the hernia, which seems to be getting worse. The worst-case scenario for the hernia is that it causes entanglement and blockage in my gut (apparently very painful) and I will need an emergency operation.

The stoma is sore at the moment and is bleeding. Apparently, the bleeding is perfectly normal but I am not sure that the most pleasant way to pass the dark hours of the night is to be cleaning both shit and blood out of a hole in the front of your stomach, especially when that part of your stomach sticking out because of the hernia. Well, it might be fun for some people but I am a little sick of it.

This abdomen of mine is like an old leather football people of my age had as a child, heavy and wet and with an inside bladder that bulged and eventually broke and needed repairing. It could not take many repairs before needing to be thrown away and replaced. The analogy fails because footballs are not usually full of cancerous cells and dangerous chemotherapy poisons.

The question is, am I prepared to go through any operation? After the last one, I signed the Do Not Resuscitate form and told everyone that I couldn’t go through that again. It was the worst experience of my life. Now things are a little different. Like women with childbirth, I have forgotten some elements of the pain and distress of the operation and its aftermath and have the feeling that life is still worth living and that I could go through an operation – as long as it wasn’t as awful as the last one – but I wouldn’t know that until afterwards anyway, so if it is offered I will probably accept. You can only give up once.

In addition to that above, I again have this tube sticking out of my arm which, when not pumping chemical poisons into my system is covered with a dressing and a tubular bandage which keeps falling off. The tube was there for six months. I had six weeks off and it is back again – in the same vein (literally, not figuratively).

Along with the chemotherapy, the pills to protect me against the side effects of chemotherapy, and seemingly permanent antibiotics, I am still taking my heart medication, seven pills a day. According to an article I read, 50% of people do not need this medication, but I don’t know which 50%, me or the other chap?

I have constant tiredness. When I was off the chemo I seemed to settle a little but now I am back to several hours in the middle of the night out of bed changing my stoma and reading. I did finish rereading Cormac McCarthy’s Blood Meridian last night. Great book but perhaps not the best choice at the moment with all the violence and death contained therein. If you are not under immediate threat of death I would recommend the book.

And then there is chemobrain. You must have noticed the amount of repetition in these blogs. As I have said before (sic) I don’t reread them, and with the chemobrain my memory is shot so I don’t always know what I have said. For those of you who see me be prepared to put up with it. I haven’t yet forgotten the name of a close friend or relative, but it is coming. Simple words often escape me.

Add up these problems and the water is rising to the top of the mental dam. Barnes Wallis may arrive with Guy Gibson at any time. OK, crap image.

This sounds a little negative so far so I had better buckle up that stiff upper lip. I am still having a good time. We have only just driven to the south of France and into Spain, and by which I mean me as I do all the driving. I love driving so it is great that I can still do it. We are planning lots of trips (assuming I get my pension paid, otherwise I am depending on those 10% of incomes you are supposed to be sending me, see Sopranos blog. Unsurprisingly I haven’t received any yet). I can still socialise, though not drinking alcohol with people who are drinking alcohol can be difficult, though my body is so gullible that pretending to drink with 0% alcohol can have the desired effect; and I turn into a pumpkin at 8pm so the evenings are rather short.

We have booked a couple of nights to a country house hotel in the Yorkshire Dales, and then a long weekend in the Lake District (it was supposed to be a week but the NHS gets in the way), so we are getting on with the important things in life.

I can still walk a little – a mile or two a day, better than nothing. I am hopeless with hills, which is difficult living in Derbyshire and enjoying visits to places such as the Yorkshire Dales and the Lake District. Norfolk is just not for me. I used to think that if I became so crippled I couldn’t climb up Kinder Scout that I would rather die. Rather melodramatic. There are other things to do.

I can still eat a lot. My appetite appears unaffected, though that is not so good when I am weighed each fortnight at the hospital. The graph has an upward progression – which doesn’t help the stoma/hernia. I have now officially started dieting, which means eating less of the cake that I eat to compensate for not having alcohol. We will see how it goes.

I can also talk the same old crap. I can offend people quite easily, which isn’t much of a challenge these days where some people seem to be offended by everything. Perhaps I may start to lose my inhibitions regarding what I say. In the end, what does it matter? I will blame chemobrain. Perhaps I will test that in another blog.

On a bigger scale, I have great social support from people, some of whom even say nice things (the rest of you know who you are). In terms of my working career, I think I managed to have a little impact, which is all we can hope for in a working life. I have made plenty of mistakes in both my personal and working life, and I will continue to make mistakes, but hopefully, overall the balance is on the positive side.

Please feel free to respond if you agree/disagree/getting bored with any of the above. I know some people don’t or feel they can respond, but despite my letting off a little steam above (note that in my book, Applied Narrative Psychology – plug plug – I argue that this sort of thing is healthy) my carapace is still intact so I can take anything – and I won’t be offended.