So today, I had my last consultation with Professor Christopher Eden, the amazing surgeon who removed my cancerous prostate. Going forI am now back under my GP, as my PSA tests since the operation have been undetectable, apart from one outlier test in February, which showed a small raise. Whilst, as with any cancer, there is a small chance it may return, statistically it is unlikely. I will continue to have PSA tests for the foreseeable future. This is precautionary, but these will be GP reviewed.
This is not the end of the journey. I will still get stressed as each test approaches. That is human nature. I will live with the life changing effects of the surgery for the rest of my days, but my experience has been far better than just about everyone else I know in regards to after effects, but it is not without a degree of change to life. But I am lucky. The journey started in 2011, with a high PSA test. I had a well man checkup and I had a slightly raised PSA level. This was followed by another one, which was even higher.
A biopsy followed and I was told I had a low grade cancer, and was put on a programme of active surveillance (A PSA test every six months). In 2015, it started to become more active and I had HIFU treatment at UCH. This addressed the issue until 2023, when it became very active and I had the prostatectomy.
I could write a million words on the effects of it all on my mental health. For me, cancer is as much a mental health issue as a physical health challenge. I like to think I am a robust person, but it has been difficult to deal with. Perhaps, for me, the most difficult aspect is that every time I have become complacent, it has become active. I feel like the albatross will never be truly off my back.
But that is enough about me. As I am in the habit of doing, I had a little chat with Professor Eden about how business is going. He told me something that slightly disturbed me. He said "Do you have brothers and sons?". I have two brothers and a son. He said "As it is in the family, make sure they all get regular PSA checks when they are over 50, as you have a family history". He add "Now the NHS no longer does regular screening, men are finding out far too late". Since I started writing this series of blogs, 30 men have contacted me to inform me that they read the blog, got tested and it was caught in time. If I've done nothing else good in my life, 30 people will live a bit longer and have a better quality of life. That makes it all worth while. So please get a test. I hope you will not be 31, but if you are, that is better than finding out in 5 years time when you start peeing blood and they can't do much for you as it has spread.
I wrote this song and made the video when I had the treatment.
Three years ago today, at about this time (11am - when I write this), I was being prepared in the operating theatre to have my prostate removed. What has happened since? Well at this point I am cancer free, according to my last PSA test. I suppose that is the most important thing, but what else? We'll I've done 45 gigs with The False Dots, I've released two albums - Don't be afraid of a finger in the sun and We don't live in America. I've written 700 blogs. I've seen my team win the FIFA Club world Cup, The Premiership, the FA Cup and The League Cup. I saw my other team Hadley FC with the Herts Charity cup and also beat Dogana Juveneze FC in San Marino. My eldest daughter has got engaged. My nephew and Godson has had two lovely daughters. My neice and Goddaughter got married. We've had amazing holidays in Valencia, Donegal, Nice, Lourdes, Cesenatico and Dublin. I have no idea how many brilliant gigs I've been to, how many great curries I've had or how many times I've had great nights out with friends. You may think to yourself "what's he on about?". Well the point is that life goes on and I have enjoyed life.
So you wanna know the gory details. I am mostly fully continent. I don't pee my pants as a rule. There are caveats. If I drink too much, generally it is wise to have a loo nearby. Also when I pee I have to remember the ten second rule. What is that you may ask? Well what it means is that when I pee, I count to ten and try and pee again. That empties my bladder and then there is no leakage. I can get an erection, although generally to get a strong one I need a tablet. I can reach an orgasm. It is dry (nothing is ejected, although the sensation is the same). Generally if I drink this becomes more difficult. I am sharing this because this was my biggest fear. This was the reason I nearly didn't have surgery. Is this aspect of my life great or as good as it was before. I'd be lying if I said it was and I do get frustrated with myself at times. There are times when things start and then they stop dead. Generally this is linked to alcohol and tiredness. There is less spontinaity. My surgeon informs me that for many men my age, who have not had a prostatectomy this is the case, but that is not really much solace when things don't work. From talking to other people who've had the op, I have concluded that I made the right decision engaging Professor Christopher Eden and would recommend him.
The one question that has always interested me is what would have happened had I just left it. My cancer was localised but becoming aggressive and was on the move. Professor Eden suggested that in a time period of 2-5 years, the cancer would have broken out. It would have spread to my bones etc and I would have started to see my bones detriorate and had severe pain. I would have had options to manage it, but this would be a lifelong issue. Depending on when and if I chose to do anything, my options would have been far more limited. If a bus had run me over last week and I was dead, I think the operation would definitely been the wrong option, but that hasn't happened. I had a look at the list of well known people who are listed as having/had prostate cancer on wikipedia. There are two people on the list, who were born in 1962. Both did not benefit from the early diagnosis I had in 2011. Both are dead. I had HIFU treatment in 2016 and a radical prostatectomy in 2023. Last month, TV present Dermot Murnaghan died at age 68 of aggressive prostate cancer last month. Every time I hear such news, I say a prayer of thanks that I went to see Dr Cuttell at Mllway Medical Practice in 2011 about my knee. He suggested "an MOT" as I was nearly 50. I had no symptoms. That was when this journey started. Given my extreme good fortune in having it picked up early, I would be extremely stupid to not do everything I could to avoid seeing it spread.
I am a member of several prostate support groups. Sadly most of the stories on them are far more negative than mine. I urge anyone who might be reading this and is around my age to get a PSA test. I feel it is vital to be honest and share my fears and doubts, because anyone who says they haven't had doubts and worries is probably lying. It isn't perfect. I wish I'd never had the horrible disease, but if you have to have it, the earlier you catch it the better your outcomes.
On our 2024 album, we recorded a song called "Don't be scared of a finger up the bum" to encourage men to get a PSA test. I filmed the footage on the way to the surgery and in the aftermath. It is a really important message. Much to my annoyance UK radio stations refuse to play it because they think it is rude. Please spread the word. To sum up. Life is good, I am hoping my surgeon will discharge me in September. Given everything, things are good.
Back in 2023, I was personally struggling. Having been diagnosed with prostate cancer in 2011, I was faced with a second round of treatment, which was going to be life changing. This series of blogs gave some clue to my readers. I didn't personally realise the magnitude of challenges I was facing. To my surprise though, BBC Radio London mid morning host Eddie Nestor had been following the blogs and got in contact. Eddie had his own challenge with cancer a couple of decades ago and recognised the fact that I was struggling, perhaps more than I realised. Eddie got in touch and offered his support. We have discussed cancer many times since.
Yesterday, Eddie announced that he was facing a new battle himself. When I started this journey, back in 2011, I would have posted a blog saying "Thoughts and prayers with you Eddie, I don't know what else to say". Now I do. I have grown up. One of the most important lessons I learned in 2023 is that you have to say what you feel. I have this message for Eddie.
Dear Eddie,
I read your post on Facebook yesterday and I was absolutely devastates. When we have spoken recently about cancer, it has been from the perspective of people who had survived, moved on and wanted to help others facing the challenges and share our experience. We both also know that the monster may still be under the bed. When we last spoke, we discussed how for people in our position, cancer is more a mental health issue than a physical one. What we spoke of the anxiety of check ups and perceived symptoms. We spoke of the fear of the monster under the bed.
In 2023 when I was struggling, you stepped up and offered support and an opportunity to honestly air the struggles I faced as a 60 year old man facing a life changing procedure. I didn't know what the future held, what to tell my children or wife about my feelings and how to deal with the huge anger and resentment that I was feeling. As someone who's job it is to talk and make people feel comfortable, you did an amazing job helping me put the jigsaw of life back together in my head. Given that we are both scalliwags from London, who don't particularly like showing vulnerability, I never properly thanked you for this. Partly, this is because I guess you didn't want thanks, but partly because when we put the monster back inder the bed, we like to pretend it isn't there.
I read your statement yesterday as I was about to visit the gym. I spent 30 minutes on the cycling machine in turmoil. When we hear such news, it reminds anyone living with the monster under the bed that it is still there. I also realised that it would only be right and proper to say something. I have no idea whether you'll read this, but if you do there are some important things I want you to know. The first is that I love you mate, and if there is anything I can do, just let me know. It may seem a strange thing to say about a bloke I've only spoken to on the phone, but it is important to realise the effect your support had on me and how appreciated it is. The second is that we never realise how dark it is getting until someone turns the light on. I thought the sun was shining and I was doing alright mentally, until yourself and other friends put the light on. Even though your no 1 battle is the physical one, make sure that you do what you need to for your mental health.
The difficult fact is that with cancer, it is what it is. It is a thief. It steals what we love most. In my darkest moments, I was thinking very dark thoughts. Thoughts I am not proud of, but if I don't acknowledge them, I would be dishonest. I seriously thought that it might be better if I wasn't around at all. Maybe it would spare the people I loved the sight of me disintegrating in front of them. I thought about refusing treatment and having a few great months or years and then flying to Switzerland. When I finally decided to have surgery, my wife almost broke down in tears, she said she'd have supported me whatever I decided, but I had made the choice that gave her the best chance of lumbering herself with me for the foreseeable future. That was probably the moment the light really came on. From there, once I had a plan, the job was easier, just stick with it.
Your message says that you are now on chemo and are in the plan. I hope you are in the phase of sticking with it. It ain't easy. Far more so for you on chemo, than me with surgery. With that it was a massive discomfort for six weeks and then more or less back to normal. I don't know what the treatment plan is. What I do know is that it will be a bumpy journey. You have a fantastic wife and two amazing kids. You have a reason. Anyone with a reason is lucky. I am sure that chatting to people like me on your show in a few weeks or months, is the last thing you want to think of right now, but myself and hundreds of thousands of people in London are crossing our fingers and praying for the day you come back and start insulting us again!
In a perfect world, in three years time, we'll be rapping on your show, talking about how we both have put the monster back under the bed. In the meantime hang in there. Do what you need to do. God put you here to do great things. You have done, I genuinely believe that there is more to come. The best things in life ain't easy, but we persevere. We get through. It won't be pretty, it won't be fun, but just as the darkness of night, follows the sunniest day, so the Sun rises again.
Give me love to Lisa and the boys. In some ways, it's harder for them. You know what the coup is and what you have to do. My mum had cancer when I was eight and it was awful. She was told she had 3 years maximim in 1970. She died in 2008. What her amazing surgeon, Mr Phillip King learned through her treatment changed many things in how such cancers are treated. He'd wheel her out at seminars and explain to other surgeons how they could improve survival rates. He told her "Don't despair, you live in the best era to get cancer, we can cure things now that even ten years ago were terminal". The same is true today, only a thousand times over. Give them boys a big hug and make sure they know you love them. And make sure Lisa knows how much you appreciate her. I am sure she knows you love her, but appreciation is different.
I probably won't be this nice to you again, that's not how we swing, but right now I just wanted to let you know that all of us in the Tichborne household are on your side mate.
Your PSA has risen to 0.04 from 0.01. Please let us know if you have any symptoms of concern though it looks from your letters that you will be having follow up with your private urologist.
Best wishes
***** Medical Practice
I was a tad shocked to see this. It was not what I was expecting and most certainly not what I wanted to hear. I contacted my consultant, who replied
Mr Tichborne
Yes, we are due to discuss this next Monday, but your PSA remains well within the acceptable range of 0-0.2 ng/ml.
Best wishes
So where I'd been expecting a brisk two minutes, I realised it would be more nuanced (shall we say). On Monday, with a mild sense of dread, I joined the call ( consults are done on line these days for such follow ups). And so it transpired. Professor Eden explained that there a number of reasons that such a result can occur, and a recurrance of the cancer is not the most likely. However, it is a change and recommed that we increase the frequency of my follow up PSA tests from eveyr 6 months to every three months and chat again in June. He explained the more likely scenarios in some detail. Briefly some vessels can regenerate or partially regenerate, leading to a non cancer related PSA increase. But of course, it could also be cancer. It is at a very early stage if it is and whatever happens, there is no reason to panic.
Rather annoyingly, it coincided with one of my three non drinking days of the week. Of course Professer Eden is right. There is no reason to be concerned right now. It is afifth of the level where it is an issue. But.....
This journey has gone on for me since November 2011. I had hoped that surgery would have addressed the issue. Maybe it has, but I am now back in the swirling whirlpool of uncertainty. PSA tests every threee months, after a rise, means more anxiety. I will approach the next test, knowing that it has sharply increased, albeit to nowhere near a level of concern. I had been in a good frame of mind and now I am not. Much as I'd love to get off this particular carousel, it is not an option. I just have to wait and see. It occurred to me that Professor Eden's message of "don't panic" dropped the word "don't" as me brain processed it. There is absolutely nothing I can do except wait. In May, I'll have my next test. I can't say I'm looking forward to it. But.......
There is one aspect that, although it doesn't really make me feel full of joy right now, is worth noting. Just suppose that the worst case scenario is occurring. I know about it and it can be dealt with relatively early. Should that happen, I am sure it will not be pleasant, but I will still be in a better position than I would have been, if I'd not been diagnosed in 2011 and had the two rounds of treatment I've had.
So to sum up, I've been re-assurred by one of the best prostate cancer surgeons on the planet that there is nothing to worry about right now. Since then, all I have done is worried
If you're a bloke of a certain age and you haven't get yourself tested, especially if you are in a high risk category.
It's coming up to that time again. Tomorrow I go for my six monthly PSA test. It has been 2.5 years since my radical prostatectomy and all of the tests have been clear since then. Most of the time I don't think about cancer returning, but between now and when I get the result, it will loom large in my thoughts. I have spoken to plenty of other people who have been through a brush with cancer and have come through the other side and they all tell you that this is a very unpleasant period. I have no idea if I will ever not need PSA tests. At the moment I have one every six months. I'd gladly never have another one, but I don't want the b****rd disease to get me so if this is the price, then so be it.
I realised recently that there are four stages of having cancer, each has its challenges, The stage where you blissfully don't know you've got it. The stage where you are told you have it, but you know you have it, but are waiting to see what happens next. The stage where they are treating it or you are recovering from treatment and the stage where you are told that you are as OK as they can ever tell you. If I am still clear in August, I will move to the fourth stage, if tomorrow or August's test brings bad news, I will be back to stage two or three. For me, the waiting and seeing lasted from 2011 to 2015 and again from 2016 to 2024. It was easy to get lulled into a false sense of security. When the PSA starts going up again for prostate cancer sufferers, it is truly awful. When we await the result, it is like peaking into the windows of Hell.
I don't deal with this period particularly well. I am very snappy. I snapped at my wife for no real reason a couple of times today. Something I rarely do. I couldn't really understand why, until I started to write this blog. In truth I just want it all out of the way. The awful truth for anyone who has 'had a brush with cancer' is that this s**t will be a part of your life from now on. Maybe I am just weak and stupid and don't cope with such things very well, but its a quarter past eight in the evening and all I want to do is go to sleep and pretend it isn't happening.
And the silly thing is that there is almost certainly nothing wrong with me. You may wonder why I am sharing this today. Well I was having a chat with a mate a week or so ago, who was going through a similar thing and I realised that on this horrible roller coaster ride at the worlds worst theme park, cancer valley, there are many nuanced ways in which you suffer. For me, cancer has become more of a mental health issue than a physical one. I am not afriad to say that and if you are feeling stressed, you are not alone.
And if you are just a bit curious, here is a little song and video I made about my experience having a prostatectomy. For 50 weeks of the year, I am fine. That is the upside, but until I get my test results, I am feeling rather anxious.
Are you sitting comfortably, you might not be by the end of this blog, but I genuinely believe that blokes need to talk about these things. I was listening to BBC Radio London this morning. A guest on the morning show was saying she'd directly saved four lives through her work raising breast cancer awareness. That is a great thing and I am proud to say that this series of blogs has saved the lives of six people, who have taken the trouble to get in touch and tell me that it inspired them to get checked out, and the checks uncovered symptoms that required treatment. They will not be joining the 12,000 men a year killed by prostate cancer, making it the second biggest killer. I've been saving sharing this story until now, but at The False Dots gig at the Dublin Castle on the 21st, a stranger came up to me, introduced himself and his wife. They were from up North. They had come down specially to see The False Dots. Why, eight years ago, he'd read my blog, had a PSA test and found he had prostate cancer. It hadn't spread, but he had to have it removed. The Doctors told him that it had been caught just in time. They thought they'd 'got it all' but weren't sure. After five years, with a zero PSA reading, he was declared clear. They fancied a shopping trip in London and decided to watch the band and say thank you. He then said "Can I buy you a pint, I can't really ever repay you, but its the least I can do". He then said "It was great seeing you up onsateg doing your music, life goes on, doesn't it?".
We had a pint, discussed football, music and life for ten minutes. Although we only spoke for ten minutes, he felt like a brother. Just before he left, he went to the loo, his wife turned to me and said "You don't know what it means to me that he read your blog and had that test, the thought he wouldn't have seen his Grandaughter is too horrible to contemplate". She then said that he was doing a lot of work in his home town with a Prostate group and often pointed people at my blog. When he left, we gave each other a hug and wished each other luck.
Eight years he's been clear. Dull and boring. Not words that will excite you, set your heart racing or make you lie back with a cup of tea and think "Thank you Lord" (or other expressions of gratefulness as appropriate as to your beliefs). However, when you have had surgery for cancer and you are having your annual review, the the duller and more boring it is, the better. In August 2023, I had surgery to remove a cancerous prostate. At the time, I felt like my world was ending. The side effects of my operation are infertility (100% guaranteed as the seminal vessels are removed), incontinence (maybe for about 50% of men in the first six months, dropping to 10-15% after a couple of years) and erectile dysfunction (50-60% of men). I had nerve sparing techniques that markedly improve the outcomes with regards to contenince and erectile function. These technioques were only available if you went private at the time, although I believe that NHS trials are now underway. I found the prospect daunting. My outcome was pretty good. I am continent, I was almost immediately, and have a degree of sexual function, which is markedly improved with cialis. I have days when the cup is half empty and days when the cup is half full.
It took me a week to fully process this meeting. We'd just finished our gig and I was buzzing. I was elated to hear his story. I never really think of myself as one of the good guys, but for a moment, I felt that God had put me here for a purpose and I was living up to his plan. I don't want to come over all religious, but it is the only way I can describe that feeling. The guy wasn't slushy or sentimental. He was a proper bloke, who just felt saying thank you was important. But afterwards, in a sober, quiet moment, I realised that it wasn't meeting him that really made an impression. It was his wife's words "the thought he wouldn't have seen his Grandaughter is too horrible to contemplate". When people have said to me "I can't bear the idea of not being a whole man", I've always struggled to find the words to give a serious response, which might persuade someone that it will be OK. She didn't have to say anything, but in one sentence she cut through all of the waffle, bullshit and everything else. For that I will be eternally grateful. His Grandaughter is two. I never knew any of my Grandparents. I always felt robbed and a tad resentful. All of my siblings were born before my maternal grandmother passed away. They all have memories and would talk in hallowed terms of 'Nana'. There is a little two year old girl, who will know her Grandad, because eight years ago he read my Cancer blog and got a PSA test.
We don't always realise our value and worth to those we love. Life isn't perfect, we are not perfect, but when we go, we leave a massive hole in the lives of people we love. A hole that cannot be filled because each of us is unique. So if you are over 50 and especially if you are deemed at risk (close blood relatives have had prostate cancer), please consider a PSA test. It ain't perfect, but six people have read my blog and caught the bastard disease before it spread, so it is not a waste of time. Just consider, in sixty odd years time, when I am long gone, a lady may just be telling her grandkids tales of how she spent time with her lovely grandad and how much she loved him. Why? Because he had a PSA test.
It's not been fun for me. But that short chat on the 21st made me realise that the cup isn not half full, it is overflowing, but with a very different brew to the one I thought I ordered at the bar.
Back in February I outlined the challenges I had last year and my health targets for this year. Following my cancer surgery in August 2023, I had a follow up PSA test last week, so I thought now was an excellent time to give a round up. As mentioned in the February blog, a check up in November showed a few things that were not right. One of these was a raised thyroid level, as well as high cholesterol and an increase in my blood sugar, moving me firmly into the pre diabetic scale.
I responded to this by bringing in a pretty strict fitness regime. I've been doing an 18 hour fast 2-4 days a week. I've also cut out a lot of snacks etc from my diet. I don't drink 3-4 days a week (something I've been doing for a couple of years, but I've stuck to it more religiously). I also set myself a target of doing 1,500km in the gym on the bike, rowing machine and treadmill. I also set my target weight as 14'7 by the end of the year.
So where am I. Well lets start with the best news. My PSA is < 0.0, which means I can sleep easy for six months. I've been managing to go to the gym 4 times a week. I've already met my 1,500km target and I'm hoping to do 2,500km by the end of the year. I am back on the treadmill (just) although I am walking at incline rather than running at the moment. I am building up to that. My thyroid level has returned to normal. I read that if you are on Omnprazol, you should increase your selenium levels. I've been eating brazil nuts and this seems to have worked. As for the cholesterol and glucose levels? Well the surgery didn't do the tests, so I don't actually know. I asked for them, but that didn't happen.
My weight is down to 15'12. As I predicted, the first stone and a half is easy to lose, then it gets hard. I've only lost 1lb since June, but that is still progress. My BMI is no longer obese. I am on the high end of fat. I must add that this is all without the help of any weight loss drugs.
Mentally, I am in a reasonably good place. I seem to have a couple of days a month where I struggle a bit to motivate myself. Being in a band and making music helps.
Anyway, that is all. Having had two days fasting and not drinking, today is a day off!
I've been sitting on some news for a couple of weeks now. It is good news. I've had my latest PSA test and the level is undetectable. It is now sixteen months since I had my prostate removed, so having crossed everything, I am starting to feel like I can finally relax. Now I've sort of felt like that before only to have a rude awakening, but it is as good as the news can possibly be at this stage, with regards to cancer control.
And then there are the other issues which us men care about. First the bad news, I can't have any more kids. As I wasn't planning on having any, that is not a hardship. Secondly there is the issue of continence. For many men, this is the biggest bug bear. I am very lucky. It hasn't really been an issue since day one, so long as I remember the ten second rule. What is that? Well, when I have a pee and finish, I count to ten and try again and give a little shake. Sometimes there is a nasty dribble left in there, that annoyingly comes down as soon as I tuck in, if I forget. If I do the ten second rule, this completely stops this. If I am in a rush and forget, very occasionally the dribble catches me out. Compared to what many men experience that is really nothing and avoidable. It is only really at the loo at football matches, where there is a big crowd of people waiting and I wanted to get done that I've been caught out. Even then, it is just enough to be annoying, it isn't a massive amount. And finally... The thing that for me was my biggest concern. Sexual function. This has more or less come back. I have a prescription of cialis, but I've been finding I am getting a sexual reaction without them, which is pretty good. There is still work. It isn't perfect, but it is nearly there. If I am honest, many problems are probably caused by my own anxiety around the matter. I find that alcohol is also a problem. When I don't drink, which is normally the case 3-4 days a week, it is fine. Annoyingly, it does mean that those romantic dinners with the missus and a bottle of wine are less romantic than I'd like. It was suggested to me that as a sixty two year old man, that may have been the case anyway by now. I am not convinced.
So to sum up, I guess I am in a good place and I feel that all of my treatment options have worked for me.
However.....
Without wishing to get on to the issue of faith and religion, I believe God put us here for a reason, gave us the tools to do what we have to do in our life and put the obstacles and challenges there to let us show our mettle. I don't really want a philosophical debate about this here and now, but I realised that I have two minor talents, which I can put to good news. I can write a blog that people like reading and I play in a band that people also rather seem to like. I am not Shakespeare or Mick Jagger, but I do OK. So when prostate cancer reared its ugly head, I was determined to use the talent of writing to document the struggle. I recall a journalist called John Diamond, who was Nigella Lawson's husband writing about his struggle with the throat cancer, that ultimately killed him. His words inspired me and when I was diagnosed, I was determined to follow in his footsteps and chronicle my journey.
Over the last four years, my band has really changed our style. With the departure of former singer, Allen Ashley in 2020, I have been able to write far more personal songs than was possible with Allen. This is not a criticism of Allen, who is a brilliant lyricist, but the band has a very different vibe now. It soon became clear to me that I had to write a few songs about my experiences with cancer. My first effort was called Buy me a bottle of jack, which is about the darkest moments I've had on the journey. I had to put it out there, because men don't talk about dark feelings and this ends up tragically. I have come to the conclusion that cancer is much a mental health issue as it is a physical illness. Being told you are mortal, have a disease that will kill you, unless you have some pretty unpleasant things done, and even then it still might, is not conducive to great mental health. I am not sure I succeeded entirely in my mission with the song. Quite a few people have mistakenly thought it is an anthem for Trumpesque redneck pursuits of drinking Jack Daniels and playing with guns. Someone complimented me on my humourous look at redneck culture in the song. It made me decide to rewrite it.
So I decided to write a song that couldn't possibly have its meaning missed. I also wanted it to explicitly address the issue of my situation and prostate cancer. So I started with the title "Don't be scared of a finger up the bum", which refers to rectal prostate examination. I then went through how I was diagnosed, what the doctors said to me about my early diagnosis, the family history, which I was unaware of and finally an invocation to all blokes to get tested and also to talk about these issues.
I realised that the idea of changing the lyrics to Buy me a bottle of Jack wouldn't work, as the whole structure was different. So I played around and came up with a structure I liked. When we started playing it, we played with various tempo's and feels and we hit on one that seemed just right. There is a bit of a nod to 'Jack' in the guitar riff, but it's very different and has become a favourite. So that was the story of the song. As for the video, I decided to film my journey to the hospital for my operation in 2023. When I looked at it, there wasn't enough good footage for a three minute video. I found an animation that showed a what happens with a robot assisted radical prostatectomy. I realised it would be an excellent background to the narration. It all came together really well.
I showed it to a few friends and they agreed it made an excellent video. They suggested I added the narration subtitles. This was done, a few tweaks added. And here we are. We discussed timing. It was agreed we'd do it after the False Dots Xmas party at The Dublin Castle. The two things were totally different so we didn't want to mix up the messaging. Why at Xmas? Well we figured that people see a lot of friends, so what better time to try and get people to start talking about the issues. Normally, when we make a pop video, we want to 'have a hit'. In this case, that isn't the purpose. It is simply to get a few people to watch it. If one bloke gets a check and catches an undetected cancer, it will have done it's job. Anything else is a bonus. So that's the story. Here's the video. I hope you enjoy it. Please share it.
I had a curious thought this week. Which has cast a bigger shadow over my life, dyslexia or cancer? Both have loomed large in my life and shaped me in some way. But if I could have changed one, which would it be?
In the red corner, we have dyslexia. By the time I knew I was dyslexic, I'd largely mitigated the effects. When it most plagued me, I simply thought I was thick. Well to be honest, I didn't think I was thick, but all my teachers did. They would constantly tell me this. At St Vincents, my parents came up for parents evening. We had a weekly spelling test and if you got all ten words correct you got a star. Whilst all my friends had plenty, I had none at all. My teachers told my parents I was 'lazy and thick'. When I went to Finchley Catholic High School, if I got a C in a subject I viewed it as most people view an A. At the end of the third year, we got to choose our 'O level and CSE subjects'. I was encouraged to choose building studies, which was for 'non academic pupils'. I jumped at this, as it meant I got half a day a week out of school, at the Curriculum centre in Barnet. I studied decoration and design for two years. It was the most useful thing I learned at school. Oddly, when I reached the age of fourteen, my brain started to process information properly. I switched to Orange Hill School, and ended up passing nine O levels and two A levels, albeit scraping in just over the line. When I left school, I moved to Stockholm, returning to become a painter and decorator, whilst persuing my punk rock career. I never had any expectations of getting a proper job. To my amazement, in 1983, I managed to get on a TOPS course and get a job in IT. When I told my parents, my Dad's comment was "how did you manage that?". He was genuinely surprised. My new work colleagues were unaware of the baggage I carried, although some were a bit snooty about my lack of a degree. After a while, when they realised I could do the job, they seemed less bothered. By the time I was 33, my parents had concluded I was a 'late developer'.
When my wife became pregnant, I decided to address an issue that I felt needed dealing with, if I was to be a good parent. I signed up for some anger management counselling. As we explored my issues, the therapist asked if I was dyslexic. I said that I didn't think so. They suggested I was assessed. To me horror, I was told I was. When I discussed this with my therapist, things fell into place. The roots of my deep rooted anger was that I had not been stupid and I knew it, but people had treated me as such all through my youth. My defence mechanism was anger and bad behaviour. I felt I'd not been given a fair chance and felt a burning sense of injustice. My response was, quite often, self destructive. The biggest victim was my self confidence. I was lucky. When I discovered punk rock music all of that changed, but it is clear to me that I've was massively held back. In truth, I was capable enough to adapt and probably ended up having a better life than if I'd had a normal brain function. I may even have been an arrogant, obnoxious twat with little empathy for the people in society getting a kicking. But who knows, all I know is that from the age of four to fifteen, school was a nightmare, to the extent that I ended up on valium for anxiety under a child psychologist who missed the fact that I was dyslexic. Worst of all for me, people who are not dyslexic simply don't get it. I hear parents of dyslexic kids say the most stupid things. I have learned to bite my tongue, but I see miserable kids and that upsets me.
In the yellow corner, we have cancer. It has taken two bites at me. One, when I was seven and my mum was diagnosed with stomach cancer and given three years to live ( I didn't know the extent at the time). I had to see my Dad crack up, my mum with tubes and pipes in her and suffer old ladies at church saying "Poor little mite". Then there was my cousin telling me I was off to the orphanage. To everyone's surprise (except my mum), she recovered but it was a terrible period. I think I suffered a degree of PTSD seeing what she endured. It is a dark period that I feel is hard to process. We didn't talk about it. For decades I resented the fact that my parents told my older sister Caroline (who was eleven) what was going on, but excluded me. When I wrote this in a blog, she told me they hadn't, she was in the dark as well. She had the same feelings. Mum got better and I locked all of the feelings in a cupboard in my mind. In 2011, I was diagnosed with prostate cancer. I've detailed this in my cancer blog series. Here I am, sixty two years old. Liberated from my cancerous prostate last year, but a year in, still feeling to some extent the sword of damacles hangs over me. I was spared the worst of it. I am continent. I can't have kids anymore, but three is probably enough. I've got some degree of sexual function, far better than I feared, but not what I was and only really possible with tablets most of the time.
But worst of all, I have spent too much time thinking about it. I realise I was selfish and pretty angry a lot of the time when dealing with the issues. I regret that. Despite working on it, I still get irritable too easily and snap aat people when stressed. I am lucky that I have forgiving people around me. The truth is that it has cast a cloud. four times a year I have PSA tests and as each approaches, I get anxious. Now I recognise some people have situations that are a million times worse, but I can only really document my life.
Which brings me to the question I have. Which of these two issues has been the bigger blight? I have to say that, from where I stand now, I believe that dyslexia wins hands down. Whilst cancer is horrible and I wouldn't wish it one anyone, it never made me feel bad about myself, question myself or be racked with self doubt. It didn't affect the way people treated me and no one ever ridiculed me for it, when I was at a low point. The physical side of cancer is of course far more probelematical, but I never ended up in psychotherapy as a result.
So what am I saying? Well when it comes down to it, because cancer is a physical thing, people can understand it. With dyslexia, you are pretty much on your own if you have no dyslexic peers. Your parents will not get what you are going through and their 'encouragement' will often have the opposite effect. Over the years, I've learned to read the signs and can spot someone who is dyselexic (or with similar issues) purely by where they stand in a crowded room. I've trained myelf to appear confident, singing in a band helps, but my natural inclination is to hide in crowds. What I am trying to say is that, as far as I am concerned, dyslexia isn't nothing, it is a massive thing. To me, in my case, its worse than having prostate cancer, and I am not saying that lightly or glibly.
A year is a long time. A lot has happened. My recovery had several stages. The first two weeks, I had a cathetar, so was pretty uncomfortable. When that came out, the question was whether I'd be continent. I bought a stack of pads, but from day one, I didn't need these. Occasionally, there was a small dribble if I was inpatient and didn't empty my bladder properly. I've found there are two situations which can be problematic. One is where I drink more than four pints of beer and do not have a loo handy. The other, which can be more problematic, is where I am sitting down and I suddenly reach down to my left or right to pick something up off the floor. The strecth seems to open the sphincter to the bladder. A small amount f leakage will occur. The time this is most a problem is at band rehearsals, when I am setting up guitar pedals. It is not really enough to constitute a problem, but it is not pleasant. I did my pelvic floor exercises before and after, which I believe helped. I have tried to limit my caffeine input to three cups of caffinated tea a day (in the morning) and I try and avoid having more than four beers. If I am on a sessions, I'll have a single shot of whiskey instead for the round. Much of it is learning to manage situations. I don't go on massive drinking benders particularly often, so it isn't a big problem for me, but on a couple of occasions I've got carried in the moment and realised my mistake. Fortunately Thameslink trains have loo's. It's when I've taken the tube I suffered.
As to sexual function, that is more of a work in progress. With the help of Cialis genre drugs, I can function sexually. I've not had what you'd describe as a sponatneous erection without them. I have full feeling when sexually aroused and can reach a climax. It is odd as the sensation is exactly the same but nothing comes out. One of the main reasons that men don't have surgery is fear of losing sexual function. It is not great to have to take pills, but on balance, it is better than death and I have a supportive partner. I discussed this with my surgeon and he said that male sexual function starts to decline from 55. As I am 62 this month, I should accept that I can perform with tablets and not be too hung up about it.
So what was the alternative? Radiotherapy or do nothing. If I'd had Radiotherapy, I'd have been on hormone therapy for three months, had six weeks of radiotherapy and then had another year of hormone therapy, so I'd still have six months of treatment left. Theoretically, when this was done, my sexual function would have returned to normal. I was very much leaning towards this initially, when the team at UCL told me I'd have no sexual function post op. When Professor Eden told me that the neurosafe surgical procedure offered a far better chance of preserving function, I decided to go for that. I was pleased that I did. I would not like to still be in treatment. As to doing nothing? Well he said that I couldn't be sure, but most likely within a couple of years, given the pathology of my prostate, it would have spread. Then I'd have been on hormone therapy for life.
The neurosafe procedure is only available privately. I was diagnosed originally in 2011, when I was 49.I have no idea how I'd have reacted to the news that my sexlife would be over. I personally think it should be a default for all men under 55. It is expensive, but cheaper to the NHS than long term cost of men declining treatment and dying of the disease.
Life moves on and life goes on. I was considering the future of this series in the blog. For the foreseeable future, I'll still be having quarterly PSA test and bi-annual consultations. There's a more than reasonable chance that it might be a rather boring series of 'everything is OK blogs', I certainly hope so, but only time will tell. Should I continue with it? I'm not a doctor so all I can really do is pass opinions. At some point, I may well put it all in a book of some sort. Would anyone be interested? It cast a shadow over a decade of my life. There are quite a few books on the subject, few have been satisfactory to me, as someone on the journey. Enough blokes get the horrible condition to make me think there is an audience. Who knows.
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About Rog T's cancer blog.
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 61 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 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. This was followed by two in February 2022 was 6.7 and October 2022 was 6.6 was stable.
In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August 2023 I had a RARP radcical prostatectomy procedure that, God willing, has addressed it.
Got the picture?
Here is a song I wrote to raise awareness amongst men of the need to get checked for Prostate Cancer
I have a complicated relationship with cancer. Like the Holy Trinity, there are three strands. The most significant (Cancer the father), which in many ways defined my personality and made me who I am was being the child of someone living with cancer. My mother was diagnosed with 'terminal stomach cancer' in 1970. She had a total gastrectomy, which in 1970 had a zero survival rate after five years. Her surgeon, Mr Phillip King, advised her that the operation would buy her enough time to 'get her affairs in order'. A tumour the size of an orange was removed. It transpired that even if you survived and the cancer didn't come back, you slowly starved to death. Much to Mr King's surprise, and thanks to eight pints of Guinness a day, as well as sheer bloody mindedness, she survived until 2008 and died of a stroke. Mr King informed her in 1984 that no one on the planet had survived the surgery as long as she had. He did a series of x-rays and tests and found that her stomach had regenerated itself to some extent. She was asked to appear at a conference. One of the lessons they learned was that her huge intake of Guinness suggested that liquid foods were a way forward to get more nutrients in. Mr King told her when he retired that many people were now surviving directly as a result of analysing her recovery. My mother gave me a somewhat unrealistic view of how you survive such things. It also left me with PTSD. As an eight year old, seeing my mother looking like death, with drips in her and seeing my Dad, the hardest man I've ever know break down in tears scarred me, in a way I've only come to terms with recently.
The second challenge was my own struggle (Cancer the son), with Prostate cancer, diagnosed in 2011, treated with HIFU in 2016 and removed last year has been a shadow. Only since I've been given a good assessment that I am 'cured' following recent PSA tests and the pathology of the prostate, I can really see the impact. I was always asymptomatic and the cancer was always at a stage where I had treatment options that meant it was not life threatening/limiting. Ironically, before I wrote this blog, I read an article in the Daily Express from this morning stating that GP's should bring back widespread Prostate testing using the PSA test. This was what caught my cancer early and I'd probably be dead or at least in a very bad place if I'd not had one. I am lucky, my GP gave me the option. When you start to get symptoms, generally your luck has run out. To me, this is a no brainer. Used in association with non invasive MRI scans, there can be no argument that this wouldn't save lives and give men better options. The cancer did change my life, but in several ways for the better and it made me far more health conscious. It did not devastate me in the way that my mothers illness did when I was eight.
And then, I'm a blogger and I seek the truth (Cancer the Holy Spirit). I try and read books and research, as people do ask me. I've recommended two books to many people. They are Anti Cancer - a New way of life and The The Emperor of all Maladies. The first is by far the best self help book on the subject. Not new age silliness, no invocations to ignore medical advice, but a lot of practical suggestions for how to deal with cancer and possibly extend your life. It was written by a medical professional living with brain cancer. The second is the history of humans relationship with cancer and the way treatment has developed. It is a heavy going, at times, book but for me it made perfect sense. I've read many others, but these two gave me, a layman, everything I felt I needed to understand. There are others that have been useful but these are two that stand out for me.
A month ago, I was contacted by Jarle Breivik MD, PhD,Ed D and he offered to send me a book he'd written on the subject. I said I'd read it and let him know what I thought. I never read about the authors before I read their books, if I don't recognise the name. I like to have an open mind on what they have to say. When the book arrived, given the title, I was sort of expecting a fluffy self help guide, to help someone in my position navigate the challenges. I read it on the flight to Italy last week, I find reading makes flights go rather quickly. To say that the book wasn't what I was expecting is a massive understatement. The book is well researched and properly referenced, as you'd expect from a Doctor operating in the area of cancer research. What I wasn't really prepared for was the central proposition that Dr Breivik makes in his book. which is that the rise in cancer rates is a direct result of advances in medical science. In short, if you live long enough, sooner or later you will get cancer and as things such as war, parastites, car accidents, plagues kill less of us, cancer will kill more of us and we should get used to the idea. Dr Breivik caused a major row in the cancer research community when he called out Presidents Obama's 'moonshot against cancer' as doomed to failure. Many researchers felt that Beivik's comments would damage funding streams.
He also makes some very thought provoking comments about tech billionaires funding cancer research. His view seems to be that what we are heading towards is a society where billionaires can extend their lives indefinitely, whilst the rest of us languish with a third rate medical system. He talks about replacing cancerous organs with ones bred in genetically modified pigs. None of this is cheap.
He also postulates that death by cancer may well be the best way, of the big four, to die. With sudden death (accidents/heart attacks) you get no time to plan and say goodbye and it is a terrible shock. With dementia, you are effectively gone long before you are dead and everyone else suffers, with chronic ailments, you slowly fall to bits over decades, with your life getting ever worse. Cancer gives you time to plan and say goodbye, but is relatively quick.
Towards the end of the book, he talks about AI and the prospect that we could all be digitised and live forever in the cloud.
The book is extremely challenging, especially for someone like me, who's life has been changed twice by cancer. It is clearly written by someone who sees the world through the eyes of a researcher, where the challenges are interesting and theoretical and where myths need exploding. His explanation as to why cancer rates will continue to rise, whatever we do, is something that I hadn't previously appreciated and in some ways needs to be said. Obama's mission to make cancer a thing of the past was doomed to fail as cancer simply evolves as medical science finds ways to beat it.
Like many cancer researchers Dr Breivik is very interested in genes and very influenced by Richard Dawkins book The Selfish Gene. Like Dawkins work, his view on this is interesting and helps to understand the processes of nature around us. He doesn't make what I consider Dawkins mistake, in using his scientific arguments to launch crusades against people who take perfectly rational views of other areas of life, who disagree with him. I've always found Dawkins to be extremely interesting but highly annoying at the same time. He seems to want to force people to take sides, when we don't really need to. If Mrs Beans down the road is made happy by nipping down to church at St Michaels on a Sunday, why should anyone else care, if she's not harming anyone. It may be completely irrational, but many things that were once judged as irrational are now deemed scientific orthodoxy. If it was scientifically proven that the probablity God existed was 99%, I personally would applaud Dawkins if he remained an atheist and took the view that the the case wasn't 100% proven. Likewise, I'd not expect the Pope to jack it all in if it was proven God didn't exist. A theology professor once told me that "The day science proves God doesn't exist, is the day his existence becomes a certainty". I didn't understand what he was saying at the time, but his point was that once we had certainty, we could indulge our beliefs to our hearts content, without having to have arguments about the unproveable. I'm with Dawkins that killing each other in the name of God is stupid, but I think that if we abolished God, we'd simply find new things to argue about. Being atheists didn't prevent Stalin from murduring Trotsky. But Breiviks point is that Darwins concept that evolution is driven by 'selfish genes' is a sound one if you wish to understand cancer.
So how do I feel about the book? I like being challenged. Who would I recommend it to? This is easy. Anyone who is considering a career in medicine or medical research. It puts many of the questions that I didn't even know I wanted to ask into very clear focus. After I read the book, I realised just how many brilliant people have worked in the field of cancer treatment and research for all their career, and yet we are still where we are with cancer rates rising. For such people it will help in "making sense of cancer".
However, I do have an issue with the book. I wouldn't recommend it to anyone undergoing treatment. It is simply too depressing and I really don't think that it would help them make sense of cancer, as they look at options. Both of the major treatments I had were in some ways 'novel'. The HIFU was part of a medical trial by UCL. My radical prostatectomy with neurosafe is not a NICE recommended procedure and is not available on the NHS. It gives better outcomes, but is expensive and the NHS sees no benefit in men like me maintaing erectile function. The point is that research and science gave me options that simply didn't exist when my Uncles had prostate cancer in the 1970's and 1980's. I didn't have my testicles removed as my Uncle did, to slow the spread. I am all for research and I completely understand the criticisms of Dr Breivik from colleagues concerned that his comments would damage funding.
To conclude, I wear two hats. I had two careers that ran side by side. I worked in IT for 30 years as a freelance consultant on large commercial computer systems. I understand data and numbercrunching. I understand that you have to be honest about information and you have a duty of care to present it in a way that has integrity. I developed some very complex software, which identified patterns in billions of items in disparate data. Sometimes the data would answer questions that you hadn't even asked, but delivered huge benefits. As such I am not entirely sure anyone can make predictions of the future. I recall when the World Wide Web was launched, we were told that the major benefit would be that scientists would be able to exchange information and the world would be better. I wonder if Tim Berners-Lee would have bothered if he'd realissed it would launch the Anit Vax industry. In short, I am wary of sweeping statements, such as the Moonshot at cancer was doomed to failure.
Then there is my other hat, as both an artist and a cancer sufferer, I want to have dream and have hope. I am not sure that someone who has been told they have three months to live and that they will be mired in pain and despair would really benefit from being told that of the four main ways to die, cancer may well be the best.
So, I am glad I read the book. It was interesting and thought provoking, a great read for people who's job is to understand cancer and medical research and challenges. It would also be a good read for people with a general interest in medicine and the way the world works. For someone who is going through treatment, I think it may be very difficult. Unless you have an analytic mind and the bandwidth to process the bigger picture, with all of their other challenges, I don't really think it would help you make sense of anything.
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If you enjoy reading this blog, why not have a listen to my music and give it a like. I've written a number of songs about my struggle against cancer. This is one, Buy me a bottle of Jack, about the darker moments. The False Dots are playing at The Dublin Castle in Camden Town this Sunday from 7.30pm. Come down and say Hi - Tickets available here - https://www.wegottickets.com/event/621102
Last week, I had my post op, nine month PSA test. In truth, I was slightly edgy. Every time I've felt like I'm winning, I've had a knock back, so I was not exactly serene. My previous two tests have indicated no cancer. I am not sure when, if ever, I can say I have been cured, but I'm guessing that nine months is too early. The good news is the level is undetectable. The news cannot be any better.
The next step is to have a chat with my consultant. I would be surprised if he says anything other than "This is very good news". We will then discuss my continence, which is also pretty good. I've not really had any issues since the cathetar has been removed, except for when I've been silly with alcohol. Even that is improving. The only small issue is when I pee, if I forget to count to ten when I finish, sometimes a bit comes out when I tuck in. Then we'll discuss sexual function. That is slowly returning with the aid of Cialis. I had hoped it would be quicker, but we are getting there.
I've had a couple of chats with mates who are around my age. I mentioned this and they told me that they needed Cialis and they hadn't had a prostatecomy and reminded me I wasn't 18 anymore. I do get this, but as I was 100% functional until the op, I do feel I should be doing better, no matter how unrealistic this is. One thing I've found, which wasn't true before, is that if I drink any amount of alcohol, then the cialis doesn't work. A glass of wine or a pint is OK, but any more and forget it.
And finally, there is the state of my mental health. I think it is fair to say that the operation had a huge effect on this. I would say I'm 85% back to where I was. If you'd asked me on Friday, I'd have said I'm 100% but the events at Hadley FC on Saturday shook me. Seeing a young man of 20, in his prime, keel over with a cardiac arrest really upset me. I can't say that I've 100% got my composure back. I've been feeling rather vulnerable. I suspect that before the op, I'd have not felt quite the same. I'd have been upset, but not feeling anxious and depressed about it three days later.
Recently, I've been on a real high. My band, The False Dots, have been on a bit of a roll. We did a wonderful gig on Friday night, but in truth, I've not felt like shouting about what a great band we are and doing the usual stuff I do.God willing, this malaise will pass and I'll my glass will appear more half full than half empty as I feel today. Having got some great news, I should be feeling ecstatic today, and reading on BBC News that Jack Marshall is doing well has certainly been good news, I am still feeling a bit anxious and lethargic. This is nothing major and having a bit of a cold doesn't help. I just don't feel that I bounce back as quickly from things since the op.
And as I move away (hopefully) from prostate cancer being an active medical issue for me, all I can really say is that I am extremely lucky. Heaven only knows where I'd be if I hadn't had a PSA screening in 2011. As a result of the HIFU treatment in 2016 and the RARP treatment last year, what could have been a really serious issue is under control. I was watching "The Piano" on Sunday with my wife and they featured someone who's brother, who I suspect was my age, had died of prostate cancer. I dodged that bullet, so I really have a lot to be thankful for.
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About Rog T's cancer blog.
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 61 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 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. This was followed by two in February 2022 was 6.7 and October 2022 was 6.6 was stable.
In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August 2023 I had a RARP radcical prostatectomy procedure that, God willing, has addressed it.
Got the picture?
Here is a song I wrote to raise awareness amongst men of the need to get checked for Prostate Cancer
I'd never really paid any attention to the Princess of Wales, Kate Windsor before yesterday. Royal watching is not my thing. If you'd have asked me, I'd have said "We've got nothing in common". To the best of my knowledge, she's not a fan of Punk Rock or football and doesn't do beer and curry nights. What would we talk about? All that changed yesterday. I watched her short video on the news and nearly cried. I've been in that chair (not literally, I didn't make a video), I know what it is like to be told that you have cancer. In 2011, when I was told, I had an eleven year old son and my daughters were 14 and 16. The thought that I may not see them grow up was at the forefront of my mind.
One thing I've learned is that you form a bond with other members of the club. It's like when I had a VW camper van. As you are driving along, if you see another camper van, you wave or flash you lights. With cancer, it is the same. If there's another sufferer, you don't need to explain. When you talk, you can speak openly and freely. You don't get asked the wrong questions. People who've not been through the mill, simply do not understand what it is like. Kate is in the early stages, when it is overwhelming. What has been truly awful has been the media circus around her health, the conspiracy theories have been horrible. I was completely baffled by the furore about the photoshopped picture. I photoshop pictures all the time, put filters on them etc, to make them look better or more interesting. We have old photo's of the family that had to some degree perished. During lockdown, I cleaned them up. So what? Why shouldn't Kate want to look good? Now she has been forced to go public. I hope the press leave her alone. I doubt they will
If Kate did want to come for a beer and curry, or a cup of tea and a chat in studio reception, what would I say to her? A lot of what you say when you chat to another person on the cancer journey is very spontanious. You simply cannot predict what they will be struggling with. Often it is highly irrational. For me, my biggest fear was that my missus would leave with the milkman, when I became permanently impotent following surgery. Luckily I am not, and she assurred me that was the last thing that would happen, but it did make me seriously consider declining treatment. When I opted for surgery, which hopefully will be a permanent cure, she was actually relieved and overjoyed. She felt that any sexual imparement was a small price to pay for having me around (I know, she's mad, that's why I love her). I am sure Kate will have similar dark thoughts about the future.
I made the decision to be completely open and honest about my situation and write a blog about the progression of my cancer story. I would urge Kate to consider doing the same. Not because I have a salacious interest in her problems, but there are huge benefits. The first is that it is truly cathartic to write. I have no doubt at all that it has helped me. Maybe for Kate, a diary or a book might be better given the media frenzy around her, but just putting your thoughts and fears down helps. The second benefit is that it would encourage others to talk. Isolation and the thought "no one else understands what I am going through" is a powerful thing to do. The third is that it will give her the opportunity to control the narrative. If she puts it out there, there is nothing for the press to speculate about. I get that her kids are young and he wants to protect them. I've been on the other side of that. My mother was told that she had a terminal prognosis and had a maximum of three years to live in 1970. No one told me. I was told by a cousin that she was going to die and I'd be put in the orphanage, when I was staying with them whilst she was being operated on. It was devastating. I was seven. I asked my Dad as he was driving me to see my mum. He burst into tears, nearly crashed and then told me that the prognosis wasn't good, but he believed that with prayer, she'd come through (amazingly she did). He also told me that whilst he was alive, I'd never live anywhere but with him at home. Kids are cruel. That is the truth. I told my kids that I had cancer, but it was treatable and I'd be a round for a long time. It was the truth. What would I have told them if the prognosis was not that good? The truth, but in a slightly sugar coated fashion. Everyone has different considerations and it is for Kate and William to decide what works best for them. I just hope she still has a friendship group that can support her. Joining the Royal family puts her in a goldfish bowl.
And finally on the subject, what really strikes me is just how immature we are as a society when it comes to discussing cancer. I don't know anyone who hasn't been affected by cancer in some way. When we are told XXXXXX has cancer, the first assumption is that they are doomed. This is not true. It sounds to me like Kate's disease has been caught early and is most likely treatable. Screening for common cancers like breast and prostate cancer is the way to give yourself the best prognosis. I'd love to see Kate say that, when she is ready and in her own time. The first thing though, is for her to get her head around the whole thing. It isn't easy. Give her the time and space to do it.
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About Rog T's cancer blog.
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 61 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 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. This was followed by two in February 2022 was 6.7 and October 2022 was 6.6 was stable.
In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August, I had a radical prostatectomy and am currently recovering.
Six months on, I am continent and have a degree of erectile function, assisted with Cialis
Got the picture?
Cancer is not a death sentence. With treatment, you can get past it and have a great life. I am still alive, to the extent that I am doing a gig tonight with my band, The False Dots at the Beehive pub in Bow tonight (Sat March 23rd). Please come along if you can!
So where are with me with my cancer journey. Last Tuesday, I had a PSA test and I received the result on Thursday. This was a precursor for my consultation today with Professor Eden who performed my radical prostatectomy on August 9th 2023. Anyone who has ever been through a cancer experience knows that the period between the test and the result is one of the most tense and stressful periods. Although a sane and rational response to such events is to not worry and wait and see, human beings are not robots and we worry. The test result arrived on Thursday morning, which meant that I only had two days fretting. I was delighted that PSA levels were recorded as undetectable. That means that from a cancer perspective, I have no worries for three months, until we repeat it all again. As I already knew the result, the conversation with professor Eden was rather short in regards to cancer.
We then discussed the issue of continence. This is to do with how your own body is healing and adapting to the 'plumbing changes' between the bladder and the penis. I have had virtually no issues. I was functionally dry from the moment I had the cathetar out. I had a couple of spills when drinking excessively. As I've moderated this significantly of late, this has no reared it's ugly head. I have however found that certain movements, such as straining to lift heavy items (a part of my job) can cause a small spill, especially when my bladder is full. If I have a PA speaker to move, I take the precaution of doing a wee first, but sometimes I forget. Professor Eden assured me that this will improve for up to 18 months. It has only happened a couple of times, with small amounts, I am not massively concerned, but it is not overly pleasant.
Then we got to the issue of sexual function. This has improved significantly of late. With the aid of 5mg of Cialis, I am able to get erections. This was a major issue for me. Professor Eden tells me that the HIFU treatment I had in 2016 will, to some degree, impair this. He feels that my recovery would be far more advanced, had I not had HIFU in 2016. I explained that as I was 54 at the time and I was not given a convincing argument for nerve sparing, I felt HIFU was the right decision then. In fact, had I not had the HIFU and just taken what was suggested to me then, I'd not know about the neurosafe procedure (a procedure that offers the highest and most scientifically viable prospects of preserved sexual function following a radical prostatectomy) and may have been worse off than I am now. He is of the view that HIFU is an ineffective method of cancer control in many cases. All I can really say is that I am comfortable with my personal decisions, but respect his clinical opinion with regards to cancer control. I would still make the same choices presented with the same information.
As my mental resilience has improved, I also felt that I should send an email to my previous consultant, Professor Mark Emberton at UCLH, who performed the HIFU procedure. Most men opt for HIFU due to concerns about sexual function. Those who put primacy on cancer control would, sensibly, opt for a radical prostatectomy in the first place. I felt very disappointed that neither the UCLH surgical or HIFU team mentioned neurosafe or that there was a possibility for nerve sparing following HIFU. I only found out via a chance conversation with a friend, who's father had the procedure. He persuaded me to get a second opinion. I do feel that patients should be told there are options available, but you may need to fuind them yourself. I was lucky in as much as I had health insurance. In the end, it was a no brainer for me, even though I had to fund a part of the treatment.
I shared these thoughts. To my mind, even if neurosafe is not available on the NHS, for men that put a Professor Emberton sent a courteous reply and mentioned and stated
"Any treatment that has to be administered after a primary treatment can be challenging. When surgery fails radiotherapy is the only option. When radiation fails options are limited and we often resort to salvage focal HIFU, but with increased side-effects and risk. We are finding that men can have a very good outcome if surgery is necessary after focal treatments. You are a testimony to that.
Neurosafe is being done at UCLH as part of clinical trial and the lead on this is Prof Greg Shaw (https://pubmed.ncbi.nlm.nih.gov/35869497/). The NHS is unlikely to approve it until the publication of the study. There are not studies that I could find on the use of NEURSAFE in a post-radiation or post-focal therapy setting.
I very much believe that the salvage prostatectomy should be an expert operation and done by those with experience. That is what we do at UCLH and that is what they do at Guy’s as well. This is the best way to ensure the best outcomes."
I am pleased that UCLH are taking this seriously. I do hope that neurosafe is certified and adopted as a treatment by the NHS. I struggled to get my head around the implications of surgery for a long time and I am only now really feeling comfortable with where I am in my recovery. Had I not opted for the neurosafe option, I would almost certainly be in a darker place mentally.
Quite by chance, this morning, BBC Radio London contacted me and asked if I could contribute to their Trends at 12 slot. For this I had to pick three current news topics and discuss them with Eddie Nestor - You can hear this at www.bbc.co.uk/sounds/play/p0h3wdwn (LISTEN AT 2.11.22)
As King Charles is in hospital with a dodgy prostate, it seemed a good excuse to discuss a few issues around the subject, not least the fact that I was having my six month review (also a good opportunity to plug my band's gig on Saturday - wegottickets.com/event/600663 but that's another matter). I like a chat with Eddie as he doesn't hold back. If nothing else, Charles speaking publicly will mean a few more guys get checked, which will mean a few more of us will be alive in ten years time. I am not necessarily a fan of the Monarchy, but I support anyone with a platform who uses it to promote good preventative medicine.
My biggest criticism of the NHS is not the National Health Service, it is the National Sickness Service. It does far to little to stop us needing it's services and as a result is overwhelmed. But that is another blog.
--- About this feature
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. On 9th August, I had a radical prostatectomy and am currently clear of cancer, six months on. Early days, but hopefully the surgery has cured the problem of cancer. My continence is good, the next batttle is erectile function.
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 61 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 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. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable.
In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12 and I opted for a radical prostatectomy, using the neurosafe process to give the best chance of maintaining sexual function and continence.
Got the picture?
And finally. I'm a musician. I am blessed to play guitar and sing in the finest band - The False Dots - on Planet Earth and I wrote a song to get blokes to get a PSA test and talk about this stuff. Please have a listen. It's a banging tune! There is nothing more uplifting than hearing an audience join in for the last line!
