Wednesday, 3 June 2020

Rog T's Cancer Blog - We've reviewed your latest scan and.......

Anyone living with cancer, who has had a procedure and has an annual review will know what today is like. Today is the day when I got my results. In previous years, this has meant a trip to UCH, usually with Clare for moral support. This year, it took the form of a telephone consult, held in the back garden while Clare did her on line yoga lesson. I had been informed that they'd be calling at 1pm. As it was, I got the call at 12.45pm, fifteen minutes early. I wasn't expecting it, I was having a cup of tea and doing some guitar practice. It caught me rather off guard. If you've been following this particular series of blogs, you will know that I had an MRI scan at UCH early in May. You will know that I had an initial consult on the results a week later, where the I was informed that there was some 'change' and that the team would do a full review of my case at the next multi available team meeting, which was this Monday. During the call, I was reassurred that the change wasn't significant, but a biopsy may be in order. What I didn't mention was that I then had a PSA test as advised and got the result. It was up from 4.6 to 5.45. I had previously been advised that the point where there may be some concern was 5.5. My GP rang me to discuss the results and expressed a degree of concern that it was only marginally under the threshold.

This lockdown period has been a difficult time for many of us during lockdown. I have lost a much loved 89 year old aunt and two friends who were on the vulnerable list. Each has been a shock, there were three funerals that I would have been to, that I sat out. My default way to deal with such stress is threefold. I play football. You can't dwell on your problems on a football pitch. I go to the pub with mates and talk rubbish. I rehearse with my band and set up gigs. None of these options have been open to me. Instead I've been cooped up with Clare and the kids, two of which are in the process of University related exams and have stresses of their own. They have needed my support, and I haven't always felt completely able to give it, wrestling with selfish concerns about my own health. When you have dealt badly with a situation, it doesn't help you to be in the right place to deal with worries about your own health and mortality. The family recognise that in the period between scans and results I am not at my best. I am seriously thinking that next year, if I can, I will go away on my own for a couple of weeks, somewhere nice and peaceful. Don't get me wrong, 99% of the time, all has been tickety boo, but internally the turmoil has been a very different picture. Since 1988, I've suffered badly with Tinnitus, and this is especially bad when I don't drink. At times of stress, it is at its worst. I don't drink for 3or 4 days a week and it has sounded like the M1 motorway has relocated to my head. Ironically the lockdown has reduced the usual backdrop of traffic, so it has been even more noticeable. I made a point of making last night an alcohol free night. Whilst alcohol helps with some aspects, it also lowers the threshold at which I get annoyed. I've learned that it isn't good to indulge on the night before consultations, when my stress levels are at their highest. I am generally not a 'bad drunk',  but I would advise anyone with cancer to do their drinking after, not before they receive news, for the sake of all.

I've not really felt too much like writing blogs too much of late. I've been conscious that my heart hasn't always been in it, so perhaps they have not been up to the usual quality I'd expect of myself. I 'm grateful to Richard Wilkinson and Chris Fanning for their help with our quizzes, which have been a high point. That aside, I've had no appetite for doing the usual research that I put into my factual blogs. I've always been conscious that there is a limited appetite for people hearing my opinions, without a factual basis. The current global crisis has put many things in perspective. For me, one positive aspect of the crisis is that the NHS and other care workers have been getting the recognition they deserve. Whether this will result in the pay and conditions they deserve is another matter. When this crisis goes away,  they will still be treating me and many like me for chronic conditions. I want the best people in the country to be doing this. You only really get that if their pay and conditions reflect their value.

So anyway, back to today and my consult. Dodgy looking scan, raise in PSA. I woke up not looking forward to Wednesday 3rd June. I lay in bed until 10.30, pretending to read the papers. Then we took the dogs out. Luckily for Clare, we met one of her doggy friends. She had a socially distanced chat, whilst I was in deep dialog with myself, rehearsing the conversation in my head that I would have with the consultant. Having worked all that out, I was thinking about the dates for various procedures and how this would be managed with the easing of lockdown. I was thinking about the implications of more treatment on my prostate and how I would look at the options. I may have been walking next to Clare, but we could have been on different planets. As I mentioned though, she was spared this sullen, thoughtless silence. Her friend has a new puppy, who was a bundle of energy and so she actually had a pleasant walk.

We got home at around ten past twelve. I made some tea, she got the computer set up for her Yoga class. I took the guitar into the garden. My plan was to go to take the call in the bedroom, so I was sitting comfortably for the news and I could come out when I'd digested the news. I was once told that in the cells for those condemned to hang in prisons, they would always set the clock five minutes late, so that the prisoner would be taken before they were ready. This meant they'd be less trouble as there would be less adrenalin flowing. When the call came, I immediately thought of this.

The call was short. After the review, they'd decided that everything looked fine, all was still within the bounds of normal. A couple of PSA tests over the next year and another MRI next May. I asked about the previous call "We'll when we looked at it properly and had the PSA test, we decided that it was just fine". I was genuinely surprised.

As I mentioned, over the lockdown period, I've been doing a lot of playing of the guitar. I have found it hard to be creative, but yesterday I was playing some old material by The False Dots. One of the songs, Blue Soldier, was written in 1985, a tribute to the trench poets of the first world war. I co wrote it with our singer Allen Ashley. I relaised that the words could, with very minor changes, reflect the current crisis. I exchanged emails with Allen, who disagreed with the concept. The verses were largely written by me, with him writing the middle eight, an amazing piece of prose, dramatic and very rooted in the works of those like Wilfred Owen.

Having had my consult, I decided to update the song, respecting Allens view and inserting a new middle eight. I'm no singer, but I just wanted to pay tribute to the NHS staff, for their efforts. With the lack of PPE, the stress of the calamity and the long hours, for no thanks from those in charge, I felt I had to say this. I did this in one take and dedicated it to my sister Valerie and her husband Tim. Val is a nurse and Tim is an emergency doctor. There are thousands of people who are alive today thanks to Tim. Val was a hospice nurse, whilst none of her clients are around, many had a better passage to what comes next thanks to Val.  Their lives are an inspiration to me.I wish I could do more and say more. All I can really say is that playing this got the monkey off my back for another year. I just pray to God that this time next year, when I'm writing up next years installment, covid is history and the NHS staff are finally getting the deal they deserve. As I tried to sayin the song, a clap is all very well, but what the NHS staff need is decent terms and conditions, pay and PPE. If you clap but won't sanction an increase in tax to pay for this, you are a hypocrite of the worst order.

For everyone who is dealing with cancer as we speak, you are not alone. It is a rocky journey with ups and downs. For me, the mental health aspects are at least as bad as the treatment I've had. I am lucky, my cancer was diagnosed early and my prospects are good. I can only imagine how much worse it is for many others. I am lucky. I'm British. I have the NHS. Whatever cancer does to me, it won't make me a pauper. Today, the big news story is Black Lives matter. Let me leave you with this thought. If you are living with cancer in a country without an NHS, the only thing that matters to you is money and the sad truth is that in Africa and Asia the citizens won't have enough of it to pay for the treatment they require. Black Lives matter should mean in health provision as well. Much as I hate my predicament, I am actually thankful to God for opening my eyes to how lucky the accident of fate, which meant I was born in London was. If I hadn't lived with cancer for nine years, I really don't think I'd understand this in quite the same way. I hope you enjoyed the song, if you didn't I apologise.

For those of you who are regular readers and have read the previous posts on Cancer, here'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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