Tuesday 13 December 2022

Living with cancer and the stress of the annual review - Rog T's Cancer Blog

If you've ever had a brush with the big C, you will know why I probably drank more than I should last night. I had a couple of beers and a curry with my mate Keith from Croydon in the Kings Cross area. We've had a ritual for the last 38 years where we meet at a pub in the good beer guide, sample a few ales and then have a curry. I deliberately scheduled it for last night as it meant I wouldn't dwell on today's business. The annual review. After 13 years, I know what they'd say. My PSA went down very slightly from Feb to October, so I didn't expect any shocks. I last had an MRI in June 2021, so I was also not shocked to have one scheduled for next June. As reviews go, that will be a more stressful one for me. I will doubtless have a few beers and a curry the night before that review. 

I have realised that I become very stressed before these and I do my best to spare the family the fun of me snapping at them. The good thing about having one now is that it is done in time for Xmas. I have several friends dealing with cancer and they all say the same thing. There is a strange bond between us. When we talk about the stresses, we don't need to explain what it's like. My wife is quite understanding, she knows that I get ratty as the reviews approach. The worst time is between MRI/Biopsys and the results. All of this used to be face to face, but now it is done over the phone. As today was a rail strike and I knew it would be routine, I was not too worried, but I felt more reassurred when I went up to UCH and had the good professor talking me through the MRI.

This particular review has probably been the one I've been most relaxed about since I was diagnosed in 2011. I've not been taken with the desire to stand in a field and scream to let it all out, as I have on some occasions. I'm sure that when I have the MRI next year, I will have some of that as I wait for the news. Why do I mention any of this? Quite simply because it took me several years to recognise that I wasn't coping as I would wish with the wait for news. I didn't like the fact that internally I wasn't the tower of strength I thought I should be. I couldn't admit that the wait to get results was completely freaking me out. I didn't want anyone to see the internal turmoil. I also made some very bad decisions about work, which I bitterly regret. I now realise that this was because I was slighlty unhinged. I would advise anyone against making decisions when you are under severe mental stress, but that is what humans do, they act irrationally. 

I've only really realised this fully since the lockdown period, when I properly reflected on the journey. If I could give myself in 2011 some advice as I struggled to get my head around the journey, what would I say? Here are four things that may have helped.

1. Recognise that feeling stressed and losing the plot at times is part of the journey and not a weakness.  It is just a part of being a human being.

2. When you start feeling stressed, take some time out to try and lower your stress levels. If you can talk to other people on a similar journey, especially if they are further down the road.

3. Never make important decisions when you are in the middle of a treatment programme and you are facing challenges, unless you absolutely have to. 

4. Tell the people that you love that it is difficult and ask them to bear with you in your struggle.

Onwards and upwards until next time!

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 59 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.
  I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

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