Friday, 9 October 2015

Rog T's Cancer Blog - Cancer is a form of mental illness

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph.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 51 years 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 againg 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), albiet with small mass. 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?

Yesterday I got some reasonably bad news about my cancer. As I've said on numerous occasions, I write this blog because I believe Cancer (and health issues generally) are things we should talk about. I don't subscribe to the "keep it private" school of thought. People die because they don't share info, don't tell people whats going on, don't get help and don't take advanatage of the lessons friends learn. If I go to the pub I don't spend the evening boring people about my latest biopsy results, but I do discuss what I am going through if people are interested and ask. Having said that, I really dislike the "oh you poor thing" school of conversations. Yesterday I was told my cancer was more serious than previously believed. How did I respond? I played football, went to the pub then got a take away curry, which is more or less what I do every Thursday. I have no symptoms. It is not going to kill me any time soon. I really don't need sympathy, as all that is going to happen is I will have some sort of procedure to treat the problem and it will hopefully go away. Any risks are more from infection acquired in hospital or from having a reaction to anaesthetic. To be honest, these risks are no worse than if I was having dental surgery for a wisdom tooth. The cancer I have has national survival rate of 84% over ten years and I am at the low risk end. For all cancers now 50% of people will survive more than ten years. Have a look at the chart below. (Click here for more details)
Infographic showing one-, five- and ten year survival for the common cancers
UK Cancer Survival Rates

Which brings me to the main point I am seeking to make today. For most people in my position, the main issues I have to face are not physical but psychological. I am extremely fortunate and blessed to have a strong network of support in the form of family and friends. I am also able to talk abbout the issues which helps. But I can't pretend that at times the whole thing isn't both scary and disturbing. Over the last four years, I've managed to take many positives out of the experience. I have realised that I have no fear whatsoever of death. I have strong faith, which means death has no fears. I discussed this with friends who are atheists. They asked if I had ever considered that this faith could be misplaced. My views is that if it is, it really doesn't matter as I'll be none the wiser. We can all be wrong, in fact I given that their is no majority view of what happens next, presumably the vast majority of us will in some way shape or form be wrong. But this isn't really the timeor place to have such discussions. I just add this to give a flavour of how I deal with these issues. Having said that, I am far less comfortable with the prospect of pain and discomfort. In fact the biggest fear in my case is the dreaded three I's that are the most common side effects of a radical prostate removal procedure. These are Impotence, Incontinence and Infertitlity. I fear that I will not be a proper man any more and that this will put a strain on my relationship with my wife. This is my greatest fear. Maybe I am immature, but that is the one aspect of this I simply can't get my head around. But again, although these are common side effects, they are not necessarily the definite outcome. This does however massively colour my view of treatments. For some people they love being alive so much that they simply want to have the damn thing removed. For me, I do struggle with the idea that I would be alive but not be able to enjoy the best things in life. And this causes anxiety and is my biggest struggle at the moment. So I am very much tempted to plump for whatever treatment is least likely to have these effects.

Everyone I have spoken to has different worries and fears. I was having a chat last night with a good friend who is a Muslim and is facing cancer surgery. His fears are different to mine. He has great faith and believes what happens is Gods will. But he is scared. He is also angry. We all react differently. As we discussed it, we both concluded that it is important to take someone with you when you get a diagnosis. When you get bad news, you are overwhelmed. Having someone there, who you can later calmly and rationally discuss the issue with is a really important help.

Given the survival rates, most of us with cancers, well be around for at least ten years. That means that realisitically, the biggest issue is psychological. I have formed the view that everyone who has been diagnosed should automaticallly be given counselling. I was asked if I wanted it back in 2011. I said no. I felt it was a sign of weakness and I felt I didn't need help in dealing with it. I was probably wrong. The main reason I said no, was I felt this was a waste of NHS resources that could be better used elsewhere. In my case, this may be true, but it would probably have helped me get to a better place more quickly. Many people don't have the support network I have. I also had the experience of seeing my mother successfully be treated for a cancer that had a zero survival rate in 1970. I am under no illusion as to just how awful that was. She had a series of operations, leading up to her stomach being completely removed. She was ill for years and looked like a ghost. But she survived and eventually thrived. I was seven years old when my mother became ill. To the day she died, she still had treatments related. That was in 2008.  I vividly remember the reaction of my Father, a very tough Aussie WWII bomber pilot, when he was told the news that my mums cancer had a zero survival rate after five years. He told us and burst into tears. My mum was the love of his life and he couldn't contemplate life without her. A it was, she outlived him by 19 years.

But cancer devastates families. The fear and the stress is for many worse than the disease. We really need to recognise this and ensure that this is addressed. Cancer is a very scary subject. If we could in some way remove this fear, many people would have far better lives. As I have been writing this blog, it occured to me that I haven't asked my wife how she felt about hearing the news. That is remiss of me and will be the first thing I address when I finish typing. Because when it comes down to it, I believe that of all the horrible things cancer does, inducing fear and depression is the worst. we need to acknowledge that Cancer is in many ways a very nasty form of mental illness, that affectes far more people than those that simply are the direct victims of the curse.

1 comment:

Venomator said...

Hi Rog, another interesting post in your fight agInst cancer, thank you for sharing it. I am, probably, the polar opposite to you in many ways! In June I was diagnosed with a High Grade, B Cell, non Hodgkins Lymphoma. My wife was devastated and took it really hard, I mean really hard and still struggles inwardly even now. On the other hand, I have not really been anything other than almost blasè about it. I am not of any faith at all, but neither am I atheist, per se.

I have no fears about what may lay ahead, in fact, I do not even think that far ahead, never have and probably never will. The psychological effects you speak of have not, up to now, affected me and not just because I need to remain strong for my Jill.

I originally started a daily journal, purely for private consumption, at my wife's suggestion and to catalogue the events, feelings and side effects I was going to endure. Immediately I was diagnosed with the specific type, which did not take very long once a successful biopsy was achieved, I was started on pre-treatment for the lengthy chemotherapy I was prescribed. For the last few weeks the build up of the side effects has prevented a daily entry - the nerve endings in my extremities means that typing for any length of time is virtually impossible because of the acute pain it results in to my finger tips.

As far as I am concerned, the chemotherapy is a cure to be endured and will be worth it when it is over. Sure, it is not a particularly pleasant treatment to undergo, but the alternative was not even one to contemplate. I did not have a choice of treatment, it was chemotherapy or die, fact!

Shortly after starting my journal I decided to open it up for anyone and everyone to access, maybe it will help someone else going through the same, or similar, experiences. Perhaps it will serve to educate the odd non-sufferer in some of the issues that this nasty, unpredictable and very random disease holds.

I am a decade older than you and do not have a circle of close family and friends, having moved gradually further away, geographically, over the years. I am, by my nature, not an overly social person and do not make friends readily. My immediate family has never been close and I rarely see, or speak with my siblings. My own children live on the South Coast and we speak regularly via the many and various means now available to us. They are fully aware of the situation and we discuss it openly and frankly since I broke the news to them after my diagnosis. I am open and happy to discuss the disease with anyone and everyone who asks and I wander around my daily business, newly bald as a coot with a shiny pate on view to all and sundry. Sometimes it helps break the ice, as I invariably rub it and refer to it as the result of the treatment to kill off The Alien Within...

For all of my life I had been convinced I would never, ever, be one of the unfortunates to be diagnosed with cancer - who knew how wrong I was destined to be!

May I wish you all the very best, in whichever treatment you decide on and may it provide you with freedom from your particular form of the disease.

And I apologise for rambling on a wee bit more than intended... :)

Best wishes,

Rog... 🐍
AKA - Venomator...