Friday 7 July 2023

Today, I'm not even bothering to pretend to be cheerful - Rog T's cancer blog

I'm sick of it all. I was OK yesterday, I hope I'll be OK tomorrow, but right now I'm not OK. I'm a pretty robust person, I think I cope OK with life most of the time. But I have days when I don't. Normally, when I don't have the challenges I have at the moment, it doesn't last too long. Sometimes and hour, sometimes a day, rarely longer.  These feelings sneak up on you. I had a pleasant enough evening last night with friends. When I woke up, I felt OK. took the dogs out in the sun.

When you find yourself in these moments, it seems to me that when you find yourself in a position of vulnerability, there are certain types of people spot the weakness and see it as a great opportunity to put the boot in. What is it in human nature that makes some souls so evil? I can cope with cancer, I can cope with horrible people. I can cope with getting a good kicking (metaphorically), but sometimes you think to yourself "why bother". I find myself thinking, can I really be arsed with all of this aggravation. I think, why not just tell them all to stick it up their arses and wander off into the sunset (or Switzerland), just for a moment (no I am not seriously thinking that, but there are moments where it appeals). Not clinically, I am not at a stage where that is even a consideration, but when one looks at days, weeks, months, years of shite, what is the attraction of going through all of that, especially when you have to fend off the attention of idiots. I do wonder what decisions I'd make if I was single and didn't have kids. Don't get me wrong, I wouldn't deliberately do anything to upset them, just because I am feeling down and morose. That would be selfish, but I do get why people do, especially at times like this.

I worry that when I am in this mood, if someone provokes me,  I  may just lose the plot completely. Maybe in five minutes, fifty minutes, five hours, five days I'll be as right as rain. These feelings generally don't last too long, but they are not great. I am doing a shift on studio reception as I write this. This can be a blessing or a curse. Most of our customers are great and it is a pleasure to see them, this will lift my mood, but one or two are very hard work. Quite a few read these blogs and ask after me. Most of the time, this is great, but when you are feeling down, it is stressful. I don't wish to drag people down. The sad truth though, is that life goes on. When you are feeling down, the world doesn't stop for you. 

A couple of years ago, I wrote a song summing up how I feel in my darkest moments. Maybe I feel like this one or two percent of the time. 

I spoke to someone this morning, who suggested a bit of counselling may help. If this feeling were to persist, then I will start to explore that. The trouble is when I am feeling like this I simply can't be bothered to pick up the phone and when it lifts I really don't need to. 

I don't generally share these moods in blogs. In more normal times (for me) I have a morning like this every two or three months and it lasts a couple of hours. It has been a far more frequent feeling over the last few months, for obvious reasons. They say that stress is a major causal factor in the development of cancers. In some ways, it's no surprise to me that the fall out from the pandemic on my business has caused us significant stress over the last three years. The end of 2022 was an especially difficult period for us and in hindsight, it is not overly surprising that this may have contributed to the relatively recent developments in my prognosis. So far this year, things have been slightly better and the business is now breaking even. Our current challenge is to grow the business into profit and build up some cash reserves. Trying to do that whilst working out whether to have surgery or radiotherapy is in some ways a stress I could do without, but one I can't avoid. Some people have it far worse, I get that, but this is my journey. 

I'm not writing this because I want to jump in front of a train or because I am feeling self destructive. I am writing this because from what I can deduce, all of us on this cancer journey have these feelings and it is almost impossible to discuss them with your loved ones. In truth, my main emotion is overwhelming anger. Why?

Today, I was supposed to have a consultation with the UCLH surgery team. It seems that they have cocked up the appointment. No one has been in touch and there is no appointment showing. This is not the first appointment cock up in recent times and it is grating to say the least. I've no idea why they have not set up the appointment, but it is clear that all is not well with the way they schedule appointments. There is no number to ring up, and emails may or may not elicit a response. I've no idea whether the people who set these systems up and administer realise the effect that such cock ups have on people who are living with cancer and other serious conditions. The last thing you need is the anxiety and aggravation of having to chase such things up. What bothers me most is that someone else's casual admin cock up, might just mean I give some random person a blast of temper or a flood of tears, because they caught me at the wrong moment. 

--- 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 60 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. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I 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. I've seen the  surgical and oncology team and am making my mind up as to what I choose. 

Things are not great but they are not dire either. 

 I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it (hopefully) won't be from Prostate cancer. Got the picture?


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