Friday 11 February 2022

Time to recognise that children of cancer victims suffer from PTSD - Rog T's Cancer Blog

 I was always going to do another in episode in my Cancer blog today, charting my life with prostate cancer. I had a PSA test on Monday and the results were that it's 6.7. The threshold to be concerned and have a chat with my consultant is 7.0 It has gone up, which is not good, but it is not high. I'll be having my yearly consult in September with Mr Emberton. I'll have an MRI before then. Today though, I am not focussing on my own cancer diagnosis(other than to urge anyone who has concerning symptoms to get checked out ASAP, it really is better to get it treated early), I'm covering a topic I've been meaning to write about for a couple of years. I want to talk about how my mother developed cancer when I was seven years old and how it changed my life and how I believe I'm still suffering from PTSD as a result, and how I think that this is probably true for every child of cancer victims. 

You may wonder what made me choose today to have this discussion. Well I was looking at the Guardian obituaries and I saw an obituary for Dora Black. It prompted me to tweet this.

My memories of the consultations are quite difficult. I'd almost forgotten the whole thing, but seeing the obituary and her picture brought the episode back. I was twelve or thirteen, it was 1974-75 several years after my mothers treatment. It had just about reached the point where she was deemed 'fully recovered'. My behaviour was appalling at the time. I was doing atrociously at school, always in trouble. I was off every other week with all manner of ailments, mostly that I'd made up. I preferred lying in bed to going to school. I found Finchley Catholic High School to be a very stressful environment, although I didn't recognise this at the time. I can remember being questioned about what was 'upsetting me' and what my concerns were. The truth was that I didn't really know. I felt like I was an alien from another planet, who had somehow been put in Mill Hill and sent to Finchley Catholic High as punishment for some terrible crime that had been erased from my memories. I'd also been given the gift of dyslexia, just so I was sure to fail. I felt absolutely desperate at the time. Despite multiple sessions Dr Black never really got anywhere. I was taken to see another paediatrician at St John & St Elizabeths hospital, a private guy, top bloke in the country. He got nowhere either. In the end, my parents took me off the valium, as they felt it made me like a zombie (their words). They decided that we'd just muddle through. 

By the time I was 14, I'd discovered punk rock music and had a focus in life. My anxiety abated and I moved on. I put all of those memories and anxieties in a drawer, shut it and locked it. I've had other issues, but I never associated them with this period. I'd decided that it was best kept locked up. 

 It would have stayed there, had I not made the rash decision to write a book of my life. I initially envisaged a fun look back at a life in rock and roll. The problem was that when I started to write it, I started at the beginning. As a kid, I was happy and full of fun. All of the pictures show me with a beaming, cheeky smile. I starred in TV adverts, you can see me in one for Heinz beans, made in 1968, that I've used in one of my band videos. Although I was doing badly at school, I was very good at acting and being photographed. My mum was most proud of my achievements.

Then in 1970, she was diagnosed with 'terminal stomach cancer'. My parents were told that her chances of survival after five years were zero. Not a soul on the planet had survived that long. She was told that they could operate, it may give her a couple of years. My mother was a fighter and she grasped the opportunity with both hands. I was seven, none of this was shared with me. Mum went into hospital, I was palmed off to a relations house. At the time, I was at St Vincents primary school. At the back was the Vincentian orphanage, a place of abject terror for us all. The orphans were treated as second class citizens.  The first time I realised that something was amiss was when a cousin told me that my Mum had cancer and was going to die and I was going to be put in the orphanage. I knew mum was in hospital, but this was the first inkling I had to how serious it was. A couple of days later, my Dad turned up. He took me up to the hospital, the first time I'd seen Mum since she'd been admitted. She was in St John and St Elizabeth in St Johns Wood, under Mr Phillip King, a top cancer surgeon. As we drove up, I asked my Dad if it was true that Mum was going to die and I was being put in an orphanage. I knew the story was a lie and knew Dad would put me right. What happened next shocked me to my core. Dad swerved to the side of the road and burst into tears.

Dad was a tough Aussie ex WWII pilot. I'd never seen him show fear, let alone cry. He pulled up, sobbed uncontrollably for five minutes and then said "Who told you that?". I lied and said "Someone at school". He said "Whoever told you that is not your friend". He then said "The doctors said Mum will probably die, but if we all have faith and pray for her, I believe she'll pull through". He then said "Whatever happens, you are my son and you won't be going in any orphanage".  When we saw mum, I was shocked. She looked twenty years older than when she'd left. She was rigged up to machines, had drips in her arm and could hardly talk. She'd been in a couple of weeks. I knew Dad had waited till she looked better and could talk before bringing me. I could only speculate how bad she'd looked before. 

That was the day my life changed. Before she'd had cancer, I'd been the apple of her eye. Now she was 100% focussed on getting herself well again. Dad had a business to run and had to look after her. Only myself and my sister were still at home. We supported each other as best we could, but it was awful. As I wrote the chapter, I felt darker and more negative. I realised that I'd been completely ripped apart, but no one had even noticed. Of course my mum was the focus, she was desperately ill but I was cast adrift. I retreated into a bit of a fantasy world. At school, we were based in portacabins by a lawn. I'd deliberately be naughty, to get thrown out, so I could stand outside and watch the birds feeding. I'd bring in bread for them. As you can imagine, this did nothing for my grades. To everyone's amazement, mum recovered. She made it to 83 and passed in 2008. But the acting and modelling stopped. 

By the time Mum was fully fit, I was at FCHS and was morphing into a difficult teenager. I'd always just thought that everyone goes through difficult times and we all have episodes in our youth that we lock away. However, over the last few years I've realised that this is not something trivial. I was extremely lucky. I had a strong father and my mother recovered. They were relatively well off, so I was cushioned from the worst ravages of the time. This was brought home when I employed a young man, the son of one of my friends. His father died when he was six of pancreatic cancer. I don't want to discuss his circumstances, but our private conversations lead me to the conclusion that a parental brush with a serious cancer causes children to suffer the most terrible PTSD. His experiences and memories made me re-examine the period. Back in the early 1970's there was no concept of giving people support to get through difficult experiences. I don't recall ever being asked if seeing my mother in a hospital bed, expecting her to die had affected me or how I felt. If anything, it was quite the opposite. When I was slung out of classes, whilst my mum was in hospital, I'd be whacked by the Headmistress with a table tennis bat for being naughty. 

My view is that the NHS default position should be that children of parents with serious cancers (and other life threatening conditions) should be given conselling for trauma. My own experiences of counselling sessions was not great. I remember big desks and books. I remember difficult questions and an expectation that 'something was wrong' that I could explain. If I'd have told them what I really thought, I've always thought they would have locked me up for being insane. If I'd said "I feel like I'm an alien from another planet, who has had all their memories erased and I've been put here, in this body as some sort of punishment for a crime I can't remember, I know this is not true, but it is how I feel" I have no idea what reponse I'd have got. I suspect they'd have told me to stop watching Gerry Anderson's UFO, which may well be where I got the idea. Sometimes I'd lie in the garden, look up at the stars and pray that the aliens would come and take me home and that it would all be alright. 

I've never shared this with anyone before. I don't feel like that now, I haven't since I was around 13. But I felt it with every ounce of my existence then. I found this statement on THIS WEBSITE 

  • Dissociation. People who develop dissociative symptoms begin to feel disconnected from reality. They may withdraw into fantasy worlds, and at the extreme edge they may develop dissociative identity disorder, which is the correct label for what used to be known as multiple personality disorder.
This sums up how I felt. I am fortunate that it didn't develop into MPD. A few years ago I was chatting with a mate about our youth. He lived up the road from me. He told me "We all used to joke that you were lost in space. You'd knock on our door, march in and turn the telly over to watch UFO or Lost in Space and and go mental if anyone turned the telly over". I was really shocked. I asked why no one pulled me up about it. He said "My Mum (she was a lovely and very kind Irish Lady) told us your mum was ill and people go funny when their mums are ill and to let me get on with it, so we all just let you get on with it".  What if you don't have mates with such enlightened  mum's? What if your parent has passed and the remaining one is in no position to support you? What if you don't develop a love of music (or something else) that gives you a new focus?  I've always been terrified of ridicule. It is quite funny because recently, I've been trolled on Twitter by an extremely warped character, who thinks alcohol and bad sexual performance are my personal weaknesses. They are not, I couldn't give a stuff abour such childish insults. My one true fear is to be exposed as an imposter, an alien and locked up in an institution for living in a fantasy world. I suspect that this may have started with the orphanage taunt. So there you go all you Trolls and Haters, you know my dark secret.

But I've taken the decision to own it. I once wrote a song called "I'm not frightened any more". The sad truth is that it's not entirely true, I am constantly terrified. I am terrified that I will lose people I love. I'm terrified that I'll see people in pain. Most of all, I'm terrified that if I do, I'll not be strong enough to cope and run away. but that's it.

We, as a society, cannot stop children seeing terrible things as a result of a cancer in the family. We cannot prevent the loved child suddenly finding they are the lowest priority in the house. We cannot stop them seeing parents in horrific pain, in bed, unable to talk, rigged up to machines with drips and looking terrible. But we can recognise that this will take a terrible toll. We can recognise that, without support that child will be severely damaged and will only get through if they are lucky to have a familial support group that is strong or if they have a supreme amount of inner strength. We need to recognise that such children are likely to underperform at school and they should be supported and not received tough disciplinary action without getting to the bottom of the root cause. 

There is a misguided view that children 'don't understand'. This is rubbish, when you are a child, you are like a sponge, soaking up information to build the resilience that will get you through life. Adults are the ones who find it hard to learn and adapt. The NHS needs to recognise this. In the long term, it will save them money as children will not grow up with this albatross around their neck, or at least have the tools to cope.  Sorry if this has been a long, rather disjointed and emotional blog. I had to get this out there. I hope you understand.
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 latest one in February 2022 is 6.7. I've got a review in Spetember. 

  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?

I'll finish with the video I mentioned. This is the pre cancer me at the height of my fame, in 20 million households every week. It's all been downhill since

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