Wednesday, 6 December 2017

Rog T's Cancer blog - My Cancer nightmare and thoughts on assisted dying

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 54years old and in October 2011 I  had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I'm now on a program of active monitoring.  In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0,  February 2015 it was  up to 5.5  and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October  which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture? 

Since the cancer last blog in April, I've had one PSA test in August. This was good, PSA stable at 3.7. So we are back in the holding pattern. Another MRI early in 2018. I have made a decision to cut back on my working commitments. I have enough stress in my life, so I have rearranged my diary to try and concentrate on less stressful work themes than some of the things I've been doing over the last two years. In August, I realised that I really needed to focus a little bit more on my quality of life. I spoke to someone recently who councils people with cancer, as part of some research I was doing. They gave me a brilliant illustration as to why people develop cancer. Consider your body as a building. Consider Cancer as a fire. Everybuilding has the potential to be damaged by fire. However there are three elements that you need to make a fire. The first is fuel (ie something flammable). Consider your genetic makeup as the fuel. All houses have flammable items, wood, plastics furnishings. Most of the time they are safe, some people have houses that are more prone to fires than others. If you do, you should take some more care. That is like your gene's. The next thing you need for a fire is oxygen. You should consider things like smoking, bad diet and lack of exercise as giving oxygen to your fire. But flammable materials and oxygen only give you the potential for a fire. The third key element is a spark.

For many of us, that spark is stress. There is good stress. We have sparks in our homes all the time. We light our cooker. Our gas heating ignites. Hopefully we manage those in a safe manor. However bad stress is like a spark from a cigarette, falling on a flammable soft furnishing. You may put it out. You may not. But the best strategy is to avoid the spark. So I've stepped back from some lucrative work, that I felt was not good for my general health.  I recently had a holiday in Fuertaventura as part of my mission to de-stress. I've started to plan projects for 2018 that will be more amenable to my general health. My trouble is that I'm a workaholic, so I am not scared to take work on that I don't really want. As I don't really need the money, it is really just stupid behaviour. 

So, here I am in December 2017, sitting down and trying to construct a new way of approaching things. Some people say "Isn't blogging stressful?". No it isn't. It allows me to work through issues and collect my thoughts. I really enjoy things like the Advent Calendar series we are running at the moment. How could you not enjoy putting such a thing together. What is stressful is working for other parties, where you are expected to deliver things, not given the tools you need and then held to account for the failure of other people to deliver the things you require from them. So if you can, walk away is my advice. If you can't then at least sit down and try and develop a strategy to cope. 

You are probably thinking "what has this got to do with Rog's cancer nightmare and thoughts on assisted dying". Well I wanted to give you a little background. I stepped away from some stressful work commitments in mid November, had a great holiday and am chilling out, planning what I want from next year. The cancer seems to be behaving itself and generally I am in a pretty good place. 

But cancer lurks. For me, as I've said before, the worst issues are the psychological ones. The fear at the back of my mind. These manifest themselves in all manner of ways. On Monday, they manifested themselves in a most disturbing manner. For reasons I can't quite fathom, I had a pretty awful and very vivid nightmare. I was lying in bed, feeling just fine and a nurse came in. She said "I've two patches here". They looked like large nicotine patches. She explained "the green one will sedate you and make you calm and the brown one will make you painlessly slip away". I was quite shocked. I announced "Why would I want to do that, I am absolutely fine, there is nothing wrong, I'm not in pain". The nurse replied "You are on a high dose of morphine and you are simply not aware of the pain". I said "I'm not killing myself because it's inconvenient for you". She said "It's your choice, you simply put them on when you feel you need them".

At that moment I woke up. I was disturbed and angry. My wife then brought me in a cup of tea. In the dream, she'd obviously been colluding with the nurses, so I was cross with her, but of course, in the real world, she'd been making me a cup of tea.

I spent most of Monday thinking about what happened in my dream. Of course, I don't need the patches. Even if I did, no such thing exists (to my knowledge) and even if they did, no nurse in the UK would give them to me. Assisted dying is illegal. But it really made me think. 

Should assisted dying be legalised. I think my dream summed up a few of the issues. Firstly, my biggest worry would be that the decision would be made on cost and convenience grounds. If you were in a situation where you were in unbearable pain, and you knew it would only be worse every day until you died, then I'm sure many would take the two patches. I know some have religious objections to suicide. For the record, I am a Roman Catholic, but I don't believe that God is a torturer, so I can see no reason why anyone should not be able to take such a decision if the only alternative is endless and unbearable pain. Of course, there should be strict guidelines and regulation.  Would I take the patch option? I really don't know. I'm inclined to say no, but I'm not in the "two patch" scenario, so I really can't say. Should nurses be criminalised for offering that as the only alternative to a terrible drawn out death. 

Five years ago a good friend died of cancer of the Oesophagus. It was so painful that he was put on super strong opiates that meant all he could do was sleep and dribble. But he fought to the end. He did not want to die. So it really isn't that clear. I think h should have had the option, although how that could be practically managed I don't know, as he was so doped up that he was really in no condition to grant consent. 

One thing I've found rather strange is how few nightmare's I've had about cancer since I was diagnosed. I also find it rather odd that I had this at a time when I was relatively chilled. I hadn't drunk any alcohol on Sunday or Monday and I don't eat cheese.  It was very vivid, I was wondering if anyone else has experienced such things? I tend to believe that dreams and nightmares are the way the subconscious deals with our fears and problems, so clearly there is some sort of issue lurking in my psyche that I need to address. Please feel free to leave a comment if you have any advice to offer.

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