Terror. Ecstasy. Fight. Denial. Flight. Failure. Forgiveness. Reconciliation. Hope. Love. Peace
For the second time in only a few months I was told that I had (incurable) cancer. I had already been told I had cancer, but not incurable cancer. It was even more terrifying hearing it the second time.
They don’t know until they know
Surgery had post-surgery biopsy confirmed spread which meant no cure. Despite the removal of the offending cancer-cunt, prostate gland, I cannot be cured and chances are I will die of prostate cancer. Next steps? Options? Fight (new) Fight.
So far the pace of the way my condition and treatment was being managed was impressively relentless. Diagnosis. Deliberation. Action (treatment). Compared with what happened next, a disappointing, anticlimax.
I was devastated. I was still up for the fight. Just about. A new kind of fight. The fight to extend my life. It was confirmed, I had a finite amount of time. More than anything I needed to know how (little) time?
We are all going to die that is life’s only certainty.
Every year we pass the anniversary of our death. Our death day.
If you could know that date, the date on which you will die would you want to know?
Time. Did I have enough time to right my wrongs?
Too much knowledge can be dangerous? Really?
I was advised by many (early on) not to do too much on my own research. ‘What ever you do don’t look things up on the internet’. Truth is, it is impossible not to? and? I am a researcher. It is a (big) part of my job. I researched the shit out of my cancer.
Mr Weston advised that no systemic palliative treatment (hormones, radiology, chemotherapy) would be recommended until the 0.2 PSA threshold had occurred and a PSMA scan had taken place … he said ‘that the longer, we could avoid any unnecessary nasty side effects of such treatment(s) the better’.
In the majority of cases metastatic prostate cancer will advance to two or three ‘favourite‘ spots (firstly and then onto everywhere else). The bones, starting with the pelvic bone (bed) pelvis, legs and arms, the lungs and sometimes, the lower back/spine and lower vertebra (those nearest to the pelvis and, for the especially lucky few, the brain.
No matter where it spreads to, for example, the lungs, it will not become lung cancer? It would always remain prostate cancer (but of the lungs)? Considering my prostate now lives in a jar on a shelf in a lab? Clever little prostate.
At aged fifty-six (at diagnosis) I was told I was ‘young’ to develop prostate cancer. No comfort other than I have always liked to be different, setting trends rather than following others? I was going to die or at least I could not be cured yes. But, what are the (palliative) treatment choices,? The next key steps? The biggest question of them all (for me). Time. How long have I got?
I asked. I read. I researched. I had things in mind. I wanted (needed) to make plans, to take care of ‘things’? To right my wrongs.
Statistics. Statistics. Damned lies & Statistics
The stats (and the experts) tell us this. After a confirmed, metastatic prostate cancer diagnosis, ‘the average life expectancy’ is 50% will live for five years. 10% will have a ten year life expectancy. Christmas Eve 2015 The clock started ticking. 2020 will be my five year cancer anniversary, I will be one of the fifty percent. I will be one of the 10%.
All of this depends, depends, depends
General heath, (outside of cancer), age, socioeconomic status are important factors
I am not in a high socioeconomic class. I do not have private medical insurance and I am, definitely, not the heathiest. I suffer from several shitty medical conditions (did I not mention that my middle name is lucky)? including, diabetes, sciatica, (lower back) vertebra/disc damage and chronic psoriasis.. An immune system deficiency, condition. Cancer diagnosis had meant that I could not receive planned, essential treatment as the treatment was a powerful Immunol suppressant that could severely effective the speed of the spread of my cancer.
The only treatment option open to me was hospitalisation. 3-6 weeks where they would literally burn the plaque psoriasis scabs from my body using an acid paste.
One thing was certain. For the first time in my life I had ‘finite’ time and a guide as to how much? Work to be done. Fight. Palliative treatment could extend what time I might have. I had important choices to make.
A funny thing happens after you have prostate cancer surgery. After the big reveal. No cure. Then nothing. Nada. At least temporally, you cease to exist.
Your surgeon has very little to do with you, leading, quickly, to no involvement at all. Truth is there is nothing else he can do. It is now somebody else’s turn, radiology or nuclear medicine for example? Thing is (he), nobody tells you. The appointments just stop.
Life goes on as normal. No. But life goes on. It has to. You have to. Fight.
Some positives. I survived surgery. I am alive and I am probably going die within the next six-twelve months. Back at the beginning, six months ago I had no idea if I would die, the next day, next week, one year, two, ten? Honestly? Then? I would have taken 12 months if offered? That is what terror is? I am back in work. Good. I love my job. That helps.
Truth is I rushed my recovery. I was given targets. I set (my own) targets. Realigned, once I knew of ‘no cure’. Life is important, as is quality of life. They are intricately linked. Assuming I am one of the lucky 10%? Ten years?
How much of that will be ‘physically’ worth living? Mentally? I am mentally exhausted. This transposes to physical activity. Low energy levels. Routine fatigue. low attention level. No cure.
No cure, palliative, life extending, cancer treatments bring their own debilitating side-effects, the longer you live the worse they become. Compromise. Trade offs. Difficult choices. Life. Quality of life decisions. Everything, you want, the ONLY thing you want is to be normal, normality is the goal. Even if this is temporary. Short bursts of normal.
Truth. The last year or two, certainly the last year, 6 months are going to be difficult. Not just for myself. Love. Family. I adjusted my sights from ‘Life’ to ‘make the most of life’ I had left. To hang on to normal as much and for as long as possible.
My favourite place on this earth is Glastonbury. June 2016. Could I (physically) manage it (2016)? Glastonbury is not easy. It is a week long physical ordeal. March, a radical proctectomy? 12 weeks was optimistic?
After the devastating no cure news I could feel myself sinking, giving in. Not me? I was in a terrible, dark place. Glasto was goal, a goal that might allow me hope for any kind of future normaily. My route out of my ‘darkness. It was my first shot at normal again. This upset some close to me especially Perri. She could not even begin to understand this choice. Love.
I was closer to breaking point than I have ever been. Close to caving in. I had chosen surgery which had turned out to be a massive kick in the bollocks ‘literally’. If I had any chance of the possibility of enjoying the rest of my life, I had to ‘be able to’ aim for and achieve Glastonbury. I knew that if I could accomplish that then I could fight on.
Physically, I was slowly getting stronger. Mentally, apart from actually finding out I had cancer the period of Mid to late 2016 and early 2017 was the worse episode of my cancer soap opera. Inactivity. Empty. No hope. Watch and wait. Promises.
No active treatment. Watchful waiting. Monitoring. 3 monthly PSA testing
I only discovered the word a week ago! It is so ‘cancer’!
Waiting for ‘significant’ change. Watchful waiting (no active treatment). Waiting for something to happen (that will result in your inevitable death). Why am i so impatient for my own death? It is hard to (continue) to fight during this period.
Literally, wishing your life away in anticipation of your next scan. Scanxiety.
To find out how much the cancer had spread (and how rapidly)? Moving you closer and closer to the inevitable. These feelings are common, normal shared, feelings. Cancer Behaviour. Mentally torturous. Difficult to cope with the inactivity ‘nothing happening’. Why is nothing happening? Surely there must be something ‘they’ can do? What about my super scan?
It takes its toll. Affecting my mental (and physical) health. It was affecting my families health (and well being). Sorry. Love.
A life changing decision
‘We’ decided to go ‘part-time’.
I was increasingly becoming more fatigued. I have forgotten a time without pain. Looking for some kind of respite and also another Goal ‘to make the most of life.’ We switched from full-time, five days per week to three. Tuesday-Thursday. Setting of new targets, to complete (mainly) travel orientated ‘bucket lists’. To continue with my car bucket lists. Priceless. Time. To enjoy what time ‘we’ had left together.
We met when we were children and have been together ever since. Truth. We don’t always enjoy time together (truth) but we love to travel together and my word, we have!
And we did.
We ‘tripped’ and tripped and tripped, travelled throughout an 18 months, more or less from beginning to end. 10+ trips. A couple of internal UK trips, several European trips, several European mini breaks and more than a few bucket list, mind blowing adventures. India. Russia. Australia. Vietnam. Cambodia. Right up until March 2020 and then. Stop.
Covid, Covid, fucking Covid. Followed by Brexit.
Wings clipped. Wings literally torn off more like?
Looks like Cornwall from now on then?
Time. Plans slashed. Terrible Timing.
2020 I now have a grandson to meet, to smell, to cuddle …. for the very first TIME and we cannot. 2021 No Change.
Thanks for reading.