Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death
Tuesday, 14th May 2024. I awake. It is less than a week to my sixty-fifth birthday.
How do I feel about being 65? Health wise [cancer]? About life in general [the state of our fucked up world]?
Being 65 years of age
It’s a big number. Thing is, honestly? I don’t feel ‘inside of my head’ like I am 65. Inside my selfish, fat head I still feel 25 or even 5. I have never felt ‘grown-up’ not at 64, 63 nor 50. I have remained a spoilt child. However, my body feels like I’m at least 105.
I was the baby of the family, 4 years younger than my only sibling, Carol a ‘mistake’. At birth RED haired but soon after, a gorgeous, white haired, blue eyed cutey. Despite being a mistake I was spoilt-rotten. That is until mum became ill and died aged 46. At 65, I still, selfishly, expect my own way and I am still disappointed and petulant when I cannot.
I should probably be dead
I have outlived my mum who died aged 46 by close to 20 years but almost certainly will not outlive my dad who died aged 69. 23rd December 2015 an emotional Dr Brooks, my (then) GP, clumsily, informed me I probably had prostate cancer (see a previous post).
About two weeks later, Mid January 2016, a fucking painful biopsy confirmed I had prostate cancer. 17th March 2017 radical prostatectomy surgery removed my horrible, cancerous prostate gland. Early June 2017, a post-surgery biopsy, confirmed my prostate cancer had Metastasised spread [advanced] around my body. I had Stage 4 Metastatic Prostate Cancer with no possibility of a cure. The first thing that enters your mind when you hear such news is, how long?
Lies, damn-lies & statistics
Experts measure relative survival rate statistics for prostate cancer every 5 years. Statistics, suggest that so far I am doing well. For people diagnosed with prostate cancer that has spread to other parts of the body, the 5-year relative survival rate is 32%.
The 10-year relative survival rate is 2% to 7%.
If you date my diagnosis as 23rd December 2015 I will hit 9 years survival, 23rd December 2024. If you consider the post-surgery diagnosis as the marker, (June 2016), I will be hit 9 years survival, June 2025.
Statistics.
It is a movable feast, affected by multiple, complex, factors, and totally specific to the individual. As far as I am concerned I will live forever.
Life is about living, the quality of our living. Quality of Living is relative to circumstances. How can we even compare our quality of life to someone living thru the hell that is Gazza or the Ukraine? We cannot. No matter how bad we judge our own situation there is always going to be somebody worse (or better) off. It is not a contest, who has the best/worse life. We can only really judge our own quality of living (life).
So, how do I feel at 65, [health-wise]?
Clearly I am not well. My mum wasn’t well as a child and got worse, I think I must have my mums DNA? Eight/nine years surviving stage 4, advanced prostate cancer. Multiple additional serious health conditions – chronic type 2 Diabetes, chronic psoriasis, chronic Evertoniasm! I am not the fittest specimen!
I haven’t really felt that unwell ‘all things considered’ until this past year – 18 months. I feel like, now, everything is hitting home? I have moved to the next phase with my illnesses?
Maybe Psychological?
I do regularly ask myself, John are you imagining any of this?
When working I had little or no time to notice? No time to waste on feeling sorry for myself? Now retired from work, living within no rigid working structure, maybe it is just that I have more time to feel like shit?
Early prostate cancer symptoms are marginal (in relation to older age), with practically no, noticeable symptoms until latter stages. This is part of the reason why, early stage prostate cancer, is often undiagnosed and why there is a need for a national prostate cancer screening process (like Breast Cancer for Women). Prostate Specific Antigen (PSA) screening for ALL men over 40. Otherwise, by the time noticeable symptoms are present, it is often too late for a cure. I was diagnosed at aged 56, still young apparently (then). It is now not uncommon for diagnosis’s of men as young as 26. Prostate cancer is the biggest killer of men in the UK but is completely curable if caught early enough.
I know and have known several prostate cancer sufferers, work colleagues, friends and acquaintances I have met via the various treatments I have received these past 9 years. One such, a friend, Dezzy once said to me, “I do not trust my legs any-more”. I had asked him ‘out’ to go see some live music together. This was about 3 years ago. Six months later Dezzy died of prostate cancer. At the time I did not understand what he meant by ‘not trusting his legs’.
I wake up every morning around 7.00-7.30am. No matter how long I have slept (usually 7-8 hours) my legs still feel heavy, tired. kind of like I have done a long run. Generally, when I wake, I feel tired, fatigued even if I have slept well, [without disruption). I tend to sleep well only one out of three nights (psoriasis scratching keeps me awake, especially so during the warmer, Summer season).
Suddenly, I have began to struggle with my balance, balancing. That thing men do when we take off our trousers (going to bed)? A split second when we have one leg off the ground whilst taking our trousers off? I have never even thought about such a trivial task until recently? A simple thing taken for granted. Standing on one leg (ever so briefly). I have always just done it. I now have to think about doing it otherwise I might fall. I have fallen. In same way, I don’t trust myself to carry my bedtime pint of water up to bed anymore.
I don’t trust my legs.
I cannot perform even the slightest physical activity without feeling some level of breathlessness accompanied by a mild to moderate burning sensation in my upper chest/lungs. Often, this can be as trivial as eating, I feel full almost immediately, accompanied by the same burning sensation. The level of discomfort is proportionate to the level of physical exertion. Nowadays I do not (cannot) reach anything like significant levels of physical exertion.
Any activity, it could be as minor as [vigorously] washing myself in the bathroom sink, or something more significant such as a walk to or from a buss, triggers this. I have so much opportunity for joy in my life that is limited by the slightest physical exertion.
Increasing levels of fatigue, constant tiredness, pain, side effects from taking (multiple) medications, the consequence of any and all of my other multiple conditions, psoriasis, chronic diabetes neuropathy, (in my legs & feet). Take your pick, all I know is that they are sucking the life from me.
My wife suggested I might be suffering from depression. I am an Everton supporter FFS! Of course I am depressed. My sister thinks my breathlessness (and fatigue) could be heart related. Both my parents died with heart related diseases and my sister has also, recently been diagnosed with significant heart conditions. I am reluctant to explore further as I fear that I might discover yet another condition to add to my already impressive medical CV.
Pain
Pain is relative? How can we fully understand anybody else’s pain? Some might describe my pain as ‘discomfort’ and not genuine pain? I would describe my pain as worsening. Every day, every night I experience varying levels of discomfort. I cannot remember what it was like not to have some level of pain in my life. From the second I wake to the point I go to bed [to try to sleep] I take pain relief medication. Pain medication used to be occasional, it is now 24/7.
My body, my skin, feels like I am wearing a course, hair shirt. I wish I could rip my skin from my body, piss on it and set it on fire! Imagine feeling the most itchy you could ever be? Not (just) on the outside but from the inside as well? Inside, underneath your skin so itchy it is painful? That is inflammation caused by chronic Psoriasis. Pain relief plus antihistamines help but they do not stop you from tearing your skin to pieces attempting to scratch below the surface to get to where the ‘itch’ really is?
Once I remove my clothes, the urge to rip & scratch my skin, my legs, arms, genitals even inside my anus is impossible to ignore. The feeling of relief I get from those first few seconds spent scratching that fucking itch is ecstatic. As soon as I break skin and the bleeding commences, I realise there is a high price to be paid for those 5 seconds.
I keep my nails as short as possible an attempt to reduce scratching damage. Reduce not negate. Post scratch I have to apply medication. Death from 1000 cuts. Usually this reduces me to tears. Screaming (inside) in pain. Like anything, you get used to it, or do you?
My latest symptoms (triggered by my latest medications) are within my mouth. The enamel of my teeth is crumbling away, breaking from my teeth. My teeth are getting smaller, shorter and as they do so my gums are receding. The inside of my mouth is permanently sore, especially the roof. My teeth and gums are permanently sore. So is my tongue as it frequently catches on jagged, disintegrating teeth. Tiny cuts, sores on top of splits lead to multiple mouth ulcers. It hurts to eat and drink especially with any extremes (too cold or too hot food and drinks).
6 months ago I commenced a new psoriasis medication. Ustekinumab, brand name Stelara. At first it seemed to help but then didn’t. less than a month ago I started an alternative, more powerful treatment, Adalimumab, brand name Amgevita, for the treatment of moderate to severe chronic psoriasis mostly used in adults when their conditions are severe, moderately severe and or getting worse. Both treatments are delivered by injection (two weekly).
I had previously been refused such treatments as both are immune system suppressants. Biologic medicines, that act on the immune system to reduce inflammation. The fear is (and has been in the past) that they might also take the brakes off my cancer spread. Quality of life. I actually don’t care. I hope that they do. I kind of want them too.
65, the state of the world?
It is hard to even pretend to be optimistic about the future of our world. Escalating war, escalating climate change, escalating population with unrealistic expectations from ever diminishing resources. We are governed by unqualified and unregulated politicians, leaders whose priorities lay in their own self gratification and not the people they (pretend to) and are paid to represent.
Regular [routine] inequality and injustice is now the norm. Any sense of accountability has been long abandoned. Accountability is a distant memory. Now, ‘Just say sorry’, apologise in the moment and that is enough, no further consequences? People just carry on doing shit, again and again and the more shit they do, the lesser and lesser the consequences. Being an incompetent cunt is now a badge of honour in politics?
I had been a teacher for 20+ years I have met and taught thousands of young adults. A popular 21st century mantra now seems to be, ‘I want it all and the world owes me a living’ but without having to give anything back? We are living in a world driven by an insatiable greed for profit. Profit above ALL else and ANY consequences be damned. I have seen the effects this has had on myself and people around me.
My wife, 30+ years working for Citizens Advice (CAB). Tirelessly working to help others, is now having to be my main ‘carer’, is so jaded by what she experiences on a daily basis, has become a different person to the girl I met a lifetime ago (48 years). She seems like she has had her heart, along with every molecule of compassion, ripped out of her.
How bad does it need to get?
We have raped, pillaged each other and along the way, abused our planet to the point of no return. We are all too aware of the consequences yet we continue to do so, why? Greed. Selfish greed. We are failing our grandchildren, their children and every generation to come and we don’t care? If we did we would change? A true reflection of an, ‘I’m all right Jack philosophy on the grandest scale’?
Ours, [and previous] generations have enjoyed the greatest fruits our planet, our world has had to offer. Humans have taken again and again, until now there is nothing left to take? The, ‘there are no limits’, days are well and truly over. For future generations, their world will be vastly different.
There is still room for more Joy?
These past 6 months I have been lucky to share, first hand, in the day to day life of my grandson. Unlimited first hand contact whilst he (and his mum and dad) have lived with us whilst their new home was renovated. To witness his growth, his development at such a young age has been priceless. His aura, his energy, his very being just positively oozes optimism, hope and joy.
The Big Picture
Humanity. History shows us, over dozens of centuries, that humans are an inherently, selfish and greedy species? We are never going to change. 8 years ago when I was first diagnosed (2016) I had no grandchildren and none in sight. I now have three. That is pure joy despite the reality that I will never know them as adults or even teenagers.
Circumstances can always be better and or worse? 8 years ago. I would have literally, bitten your hand off if you had offered me a chance an opportunity of grandchildren. I never dared to hope, to imagine in my wildest dreams, I would get to experience three amazing little humans.
The Little Picture
My illnesses have allowed [forced] me the opportunity to evaluate my own life. To fully embrace existing friendship and to rekindle old. To admit and accept my failures and value my successes. I have discovered I have so much love in and around my life. Looking back would I have done things differently if I could?
Oh my yes, I would. I would be a better dad and husband. Strangely, some of my biggest regrets and failures have figured in my greatest achievements. I was a relatively young father (23), people had children younger those days. I was naively ambitious, career-driven and selfish. A pretty shit dad. My son is an incredible father as is my daughter, an incredible mother. I suppose I might have shown then how NOT to do it?
So what is it like being 65?
I do feel like my life used to be lived mostly in Colour. Now, at 65 I live my life largely in Black and White. However, as my friend, Dr Lee, once said, ‘Mr Reynolds, there are things you can change and things you cannot? No point wasting time on the things you cannot’.
Dr Lee, I promise you that I will make the most of any, increasingly rare, Colour opportunities.
Thanks for Reading
Peace
Dying to Live 