Tuesday 11 April 2017

Rog T's Cancer Blog - Turmoil, fear and loneliness - Part 1

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 54 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 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" . 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 last blog on this journey, three significant things have happened. I haven't blogged about them, as I have had a bit of a crisis of morality about writing this blog. Let me explain. The first of the things was that someone who I considered to be a friend was extremely unpleasant to me about sharing my experiences. Since I started to write the blog, dozens of friends, acquantances and total strangers have spoken to me about how it has helped them. I thought sharing experiences and talking to people was a good thing, but a comment was left on the subject of this blog on a facebook post that said "Maybe you should think twice before sharing your wisdom on the subject on such a public arena". This really upset me.  What is the point writing a blog such as this, if it upsets people? For me, the biggest issue I've had on my own particular cancer journey has been the psychological stress of potentially life changing treatments. I've coped by sharing my experiences and thinking maybe in some way I may be helping people. But clearly some people take a different view. I have to say that I was completely taken aback by the vehemence of the comment directed at me speaking publicly about my condition, but if you upset someone who is clearly going through a crisis, then you have to take stock. I recently discussed the whole issue with a fellow sufferer, who said "I suspect the anger was nothing to do with you, but at a pretty difficult situation". They persuaded me that on balance there are probably many more people that draw a positive rather than a negative from the blog, therefore I should continue. If however you do feel that it is not the right thing to do, I can only apologise. There is no malice meant in these comments and I have no issue with the friend for peaking their mind. I am just sorry that they have been upset by what I've written. Like many British people I have a sense of gallows humour about my condition. If this is not always appreciated, I apologise, but I have to be true to myself. Although I was absolutely devastated when I saw the comments, I have realised that they were not meant maliciously towards me personally. 

So that is the first issue. I wanted to raise the issue because it shows how much sensitivity and anger we all feel around cancer. Clearly the person leaving the comment feels it. Clearly I do as well, as I've had hundreds of disparaging comments from all sorts about the blog, but this is the only one which has ever upset me. A quick word to any trolls who may feel that this is a vulnerability. The reason I was upset is because it came from someone I know, like and respect. Don't bother thinking trolling anonymous comments will be met with anything other than deletion.

The second thing that has happened is I got my latest PSA test. That was fairly unremakable. 3.75 - up from October but still lower than when I had the procedure. So no cause for concern. 

Then the third significant thing. I had another traansperinneal biopsy three weeks ago at UCLH. That was a day procedure under "heavy sedation". Basically they put me to sleep. I hate this procedure. Having said that, I prefer it when I'm put to sleep. The side effects are unpleasant. Blood for 10 days in my urine and semen is not much fun. It doesn't really hurt but it also has played havoc with my waterworks (I assume because the prostate is swollen). I've been peeing all the time since the procedure, which I don't enjoy. 

I am going back to UCLH tomorrow for the results of the biopsy. For some reason I am feeling very nervous about this consulation. I was informed that there was a 30% chance the biopsy would require more medical intervention. For reasons I can't quite fathom, I feel more trepidataion about this time than any previous one. I've previously always felt that it would be nothing (misguidedly). Maybe it is because I've had treatment and so it is all more real. What didn't help was when I got home tonight, everyone was out. Given my trepidation, I would have liked to have had a glass of wine and someone to talk to. In the end, I went for a walk around Mill Hill Park with the dog. Being alone with my thoughts persuaded me to put this blog together. I'm lucky, I have family and friends. My wife will come with me for the consultation. It must be awful to face this without such support.

On my way around the walk, I was mentally churning over the options and possibilities. The best case is that I simply stay on "active surveillance". I suppose the worst case is that I'll require a radical prostatectamy (it is unlikely to have spread beyond the prostate). My consultant said that this is unlikley, the most likely downside scenario is more HIFU because "They missed a bit". I must say this is not something I really fancy. I didn't enjoy the experience. The worst bit was the cathetar and the bleeding. It wasn't painful but it was far from pleasant. My biggest fear is of impotence and incontinence. At 54 years old this is not something I want to even think about, let alone live with.

For a whole host of reasons, I am not in a good place mentally with any of it tonight. I have been bottling it all up inside for since the MRI. The waiting for the consultation after the biopsy is the worst. It is all physical and real and the blood in the urine is a daily reminder. For all of you living with people in my predicament, bear in mind that if someone is in a foul mood or seemingly withdrawn, with the odd bit of irrational behaviour, there is a good reason. And for everyone who is going through this, don't be afraid to talk about how you feel to those you love. Anger is a part of the process of dealing with the disease. When it comes down to it, I simply don't want to be in this situation, but I have no choice but to deal with it. 

Tomorrow I will know. Hopefully I'll have made any decisions that need to be made and the future will be clearer. Anyway, I'm off for a beer and a curry. Probably not the best way to deal with it, but hey ho, who's perfect. 

1 comment:

Venomator said...

Hey Rog...

From one Rog to another (far less well known of course!) Rog, I appreciate and applaud your approach to open and frank discussion about your condition!

Let me explain both of those comments: I was diagnosed with non-Hodgkins Lymphoma in June 2015. The news was a bit like water off a duck's to me, but all of my family and close friends and colleagues were devastated, although I have still not really understood why, when it affected me personally so little.

Anyway, long story short and in total support with your decision, I was asked to do a daily journal, blog if you will, to detail what was going on each step of the way throughout my treatment and into remission, which I am still, thankfully, enjoying. I did this, almost every day for a while, until things seemed to be repetitive and, to me anyway, monotonous, when I extended the frequencies to suit the goings on.

I received nothing but support from everyone throughout, even strangers, and not one negative comment - although you will accept my writings were nowhere near as widely read as yours!

Even in my remission, I am able to fully identify with anyone who is a cancer survivor, or going through the turmoil of diagnosis and treatments various.

A friend and colleague of mine was recently diagnosed with Prostate Cancer and is shortly in for surgery to remove the Prostate completely! Too late for observation in his case it seems...

Anyway, I appreciate all of your writings, although I am not a resident of Barnet, I do work for the council, so it is not just the Cancer blog that chimes...

Keep up the very good work sir!

V... :)