Firstly, if you've not read my cancer blogs before, the story so far is in bold at the bottom, it may give you the full context if you read this first. For those of you that know the story, read on.
I have a dilemma. I am supposed to have a six monthly PSA test to monitor my PSA levels. This involves getting a blood test form from my GP, going to a blood test centre and having a test. This should flag up if there is any sudden change that would require a more urgent intervention than the planned annual check up that I have following HiFU in early 2015. The problem? Well the last PSA test I had was in April at the height of the last covid peak. Due to the issues with the NHS pressures, I had this at the Royal Free Hospital. I have to say that I did not enjoy the experience at all. Of all the things I did during lockdown, this was by far the most risky. Now, with a higher peak and a more virulent strain, I feel even less inclined to take the risk. I really don't want to go to a hospital, or anywhere else for that matter, where there is likely to be people who have covid and who I may be in the company of. I doubt that I am the only person in and 'active surveillance programme' who is in this position. Like all people living with a serious, progressive condition, it is a question of weighing up the risks and balances. I have had no physical changes, so I feel that the risk is relatively low if I defer for a couple of months.
Although there has been lots of talk about NHS pressures, I didn't see any evidence of this at the MacMillan centre at UCH in May when I had my last MRI scan and my last consultation. As a specialist centre, they are ring fenced from the regular pressures. Of course, if a covid infection gets in, this could be catastrophic, so my consult was by phone. I am hopeful that by May, the next MRI will be in more normal times. I am aware that at some point there is the possibility that more medical intervention is likely, but I can only hope that this will be a few years down the line at the very least. This year will be six years since the HiFU treatment and the fact I've had a completely normal life in that time has, to me at least, vindicated the decision to go for HiFU instead of a radical prostatectomy, with all the side effects that entails.
The recent situation has given me pause for thought. I feel that I am actually in a far better place to deal with the current crisis than many. I've already done the business of coming to terms with my mortality. I am at peace with the world. I am very lucky in the friends that I've had to support me. One gave me a copy of the most amazing book that has massively helped me deal with my issues. It is called "Anti Cancer a new way of life" and it was written by a medical professional dealing with a terminal brain cancer. It looks at all elements of lifestyle and diet, with a view to improving your body holistically to deal with the challenge. It doesn't focus on miracle cures, but more with giving yourself the best chances, within the constraints of a science and medicine based approach.
One of the key takeaways I learned was that you really need to remove negativity from your life. For me this means avoiding excesively dark and violent TV, films and other media. It's why I block Trolls and negative people on social media. I find the more I ignore such negativity, the better I feel and the lower my stress levels are. Some of my friends still get upset about the negative bile some people constantl;y spout about me on social media. I recognised long ago that much of this is simple jealousy of people with little in their lives to actually crow about. It is not worth letting people with negative agenda's drag you down. I had assumed that if you ignore such people, eventually they go away. The last few years have taught me that social media is not like that. Malicious people are often so entrenched in their negativity that it is their only reason to exist. Occasionally I will get a message with a screen shot from a well meaning friend saying "have you seen this?". Generally there is a rathe facile Fcebook post or Twitter message, clearly posted in the hope that it will make its way to me. Perhaps five years ago these may have bothered me, but these days I just snigger and carry on watching the football or the paint dry. The less of this negativity you have, the better you will feel and the better you feel, the strong your body's natural defences against disease will be. Don't let negativity drag you down.
My advice to you when you get enraged by something on social media is simple. Do not instantly respond. Listen to some uplifting music and chill. There is absolutely no reason why instant responses are required. When you are no longer angry, think whether it is actually worth responding and what might you achieve. The sad truth is that you cannot argue with stupid. For anonymous trolls in twitter, the decision should be easy, just block them. When it is family members and friends, it is harder. Think of the bigger picture. If someone is going off on one, just post a neutral and respectful response. Say something along the lines "With all respect, I fundamentally disagree with you, but I recognise that we are all entitled to our opinions. On this matter we may all be happier if we didn't share them here as my friends/family are important to me and I don't wish to fall out with them over this issue, as we will hopefully all be here in five years time when this isue will be a matter of history".
As I stated at the start of this blog, I am finding this crisis far easier to cope with than I would have expected, or than I would before. My journey has given me tools in the toolkit of life that are well suited to this situation. Reducing stress, managing anger and learning to relax is a really important skill set to have right now.
Tensions are inevitably raised at times in our household by the situation, we have three children in their early twenties at home, two of whom who would rather be travelling and one who is doing Uni exams. I have learned that when people upset me, it is often because they have their own demons to fight. Often when people are at there most difficult, it is because they are most in need of support. Kindness is a far better reaction than anger. Don't get me wrong, I fall down on this all of the time, but the secret is to learn that when you fall you get back up. Anger clouds our judgement, we should never make important decisions when we are angry. Loosing your rag and shouting things achieves nothing. Step away, calm down and try and be reasonable. It doesn't always work, but it works far better than the alternative, which generally results in rash decisions that you come to regret.
The bottom line is that the less negativity you have in your life, the better you will be able to cope with the challenges that face you and the easier it will be for those who love you to support you.
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. 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 was put 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. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine.
I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?
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