Saturday 23 March 2024

Dear Kate, welcome to the club no one wants to join

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.

-----------

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! 


Here is a song I wrote to raise awareness amongst men of the need to get checked for Prostate Cancer


No comments: