Tuesday 26 September 2023

Feeling human again - Rog T's cancer blog

There are many lessons that I've learned on this rather unwanted journey. One is that there are very difficult choices to be made and in truth we'd all prefer not to be in this position. Another is that there are lows and highs on the way and not all are when you expect them. Today has been a day of highs. Why? Well you may be rather surprised to hear this. I was advised when I had my radical prostatectomy (RP) on 9th August to avoid caffeine. Since then, I've been drinking decaf tea. I rarely, if ever, drink coffee, but I drink far too much tea. There are many things I've had to adjust to as the new me emerges post op. I am rather lucky. I seem to have no issues with continence at all. I am now 7 weeks out from the op. I had a cathetar for 2 weeks (horrible), I wore pads for 2 week (no major accidents) and I've just worn normal pants for 3 weeks. Last Wednesday, I wore a pad for security as I was meeting friends for beers and a curry in central London and I was nervous about the journey home. As it transpired, the pad was not needed, but the security helped me relax. 

My mens help physio, Mr Gerard Green informed me that my recovery was pretty remarkable, compared to most men he's seen. I am blessed (not least to have had an exceptional surgeon in Professor Chistopher Eden). Last Wednesday was an important personal milestone for me. It may sound silly, if you've never had continence issues,  it may be only psychological, but the fact I had a relatively boozy evening in town (I didn't go mad but drank more beer than I have since the op, by some distance) was a big deal. It was pleasant. Apart from a quick recap on how I'm coping, my evening was spent discussing football, the IT failure in air traffic control, beer and music. For a few hours, I felt human. It was great. 

Anyway, why was today a high? Today was another milestone. Not an intentional one either. I was at work and we'd run out of decaf teabags. I had a dilemma. Do I drink normal tea or do I drink camomile, that I can't abide. I thought "what the hell, I'll see how I get on with normal tea". So I had a few cups during the day. I realised why I've never really drank decaf before. It doesn't taste as good. What surprised me even more was that the caffeine made me feel great. I have been feeling quite morose since the operation, apart from when I've been busy. Right now I am actually feeling rather good in myself. It's given me a dilemma or should I say a choice. Do I stick with the decaf or do I go back to my old PG tips? I like the feeling of being me. However, I've been told caffeine irritates the waterworks. The question for me is whether or not I am healed enough for this to not be an issue. I don't want to suddenly find myself having continence issues, but I do rather like feeling human. I'm back home now and the dilemma is whether to have a cup of decaf or normal tea.  I may just have a glass of water instead, as I am not craving tea and I probably should drink a bit more of the stuff ( I have 1/2 litre at night an 1/2 litre in the morning). I think I will adopt a strategy of normal tea before lunchtime for the next few weeks and see how things go. It is all about balance.

As to my general health. I have a few issues that need resolving. I need to get my weight down. I have always kept myself pretty fit, but following an injury to my ankle in July 2022, I had to give up five a side football in March. The stress around the cancer lead me to get lazy and my weight has balloned to around 107kg. This is far too high and needs to be addressed (FYI I'm 6'1). I suspended my gym membership for September, but from next week, I will be back in there and aim to swim five times a week until I can get properly back to a full regime. I am back on salads at lunchtime and my aim is to get to 94 kg by Xmas. This should be quite achieveable, once I start properly exercising. 

I have also been advised that my cholesterol is high and according to my doctor,  I should be taking statins. I am not keen, as this will become a lifetime prescription. As my blood pressure is normally pretty good and my heart rate is usually excellent (according to my fitbit), I am not as concerned as my doctor seems to be. My resting heartrate is now more or less back to it's usual level of around 58bpm. It rocketed to 70 just before the op. 

I put this down to stress. The peak is the weekend before the operation. I was drinking to much and worrying too much. I am speaking to the GP cardio clinic on Thursday. I will tell them that I am doing nothing until after the new year, when my weight and diet should have regularised. Statins can affect your renal function and I want to be 100% sure that I am not having any more cancer treatment before I take that path. My brother had a bad reaction to them and I often have a similar reaction to him when it comes to medicins (erythromycin nearly killed both of us). This makes me very cautious indeed. Having said that, one has to be sensible. My view is that I address the weight and diet and then see. Today was the first day I've felt motivated to look to the future and address the other issues. 

I had my PSA results, which were very encouraging, being 0.02. This is exactly where they should be following the operation. Professor Eden advised me that I am statistically very likely to be completely cured of cancer, so life can progress. 

The only blot on the horizon, which is a big blot for me, is the lack of sexual function. Maybe I've been overly optimistic about timescales. There has been the odd murmour, but despite the medication, this has not been anything sustained or what I might consider a full erection. I'd hoped for something more at this stage, but I've been assurred that given everything else, it is likely to return. For some men this takes up to three years. I'd like to say this is not a big deal, but for me it is. Men don't really feel comfortable talking about such things, but we should. Sharing information helps you get there quicker. 

One thing that is clear to me from talking to other people who've had RP, is that I am extremely fortunate (which I put down to using the best surgeon in the UK). My wife tells me she is just relieved it's been addressed and the other things are less important in the scheme of things. It's a transition and I need to adapt. I was reminded of something my Dad once told me. He said that whether your glass is half full or half empty is irrelevant. What matters is that the Bar is still open and they are still serving. That is the bigger picture. And however I look at it, the bar hasn't closed just yet.

--- 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. 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. On 9th August, I had a radical prostatectomy and am currently recovering. Early days, but hopefully the surgery has curedt he problem of cancer. My continence is good, the next batttle is erectile function.

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!

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