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No More Anything

User
Posted 03 Jun 2020 at 18:18

No More Anything

Imagine that sweet freedom all of you who have been poked, prodded, fingered, blood taken, injections given, poisoned by chemo, burnt by radiotherapy, tableted to within an inch of your life in the vain hope that one or a combination of these will prolong or even save your life - but it’s now time to say NO MORE! Imagine if you will, the stress of blood tests, travel into hospital, anxiety attacks over everything from microscopic PSA rises to forthcoming scans, appointments, consultations with men in dark suits, pink shirts, brightly coloured ties. Imagine if you were at the stage where you stick two fingers up to the lot of it!

Well I’m there. I reached my nirvana after my last operational intervention on my kidneys several weeks ago. A piss in the wind, don’t-really-know-if-this-will-be-effective operation, it helped my right kidney for five days before my Creatinine levels started to go stratospheric.

Now, I call the tune. I have nothing to lose except that which I knew I would lose eventually several years ago and now, I’ve reached the point where I will not allow anyone else to mess with my body in the name of justifying a treatment script any more.

I have had robotic surgery, Bicalutamide, Enzalutamide, Abiraterone, Zoladex, Degeralix, Prostap, six weeks of pelvic radiotherapy, another six weeks of targeted radiotherapy, three months of painful and debilitating chemotherapy, countless MRIs, many many CT scans, removal of lymph nodes, DVT treatment, kidney stent and stent replacement operations, kidney external bag operations, you name it, I’ve endured it, a) in the hope of extending my life but also b) because “the professionals” have on every occasion, bullshitted me into believing that the next treatment, tick box on the form of treatment will make me better or give me another five/ten years.

I believe the fact that I have lived for seven years post diagnosis asymptomatic and then a further three as I’ve gradually become terminal has been down to my amazing constitution rather than medical science - indeed I know it has. I was always so fit as a child, played all kinds of competitive sports to a high level and had a very healthy diet. I do not believe for one moment that all the interventionist bull crap that has been administered to my body, all the radio waves, poisons, chemicals and other have helped my situation. On the contrary. I believe that they’ve weakened my immune system and body and fought with, not against the cancer.

The real truth that many refuse to acknowledge is that we do not question our medical professionals enough. We hang on their every word, believe and trust what they tell us - yet their knowledge of cancer treatments has not changed very much, bar a couple of new drugs and switching permutations of existing treatments in the past twenty years. Compared to breast cancer, (all cancers should be deserving of the highest investment into research etc), prostate cancer receives scant revenue.

Yet, around 50,000 men are diagnosed with prostate cancer every year – that's 129 men every day or 1 in 8 equating to the death of one male every 45 minutes. It is a travesty. Still, this post is not my personal political polemic, (nice alliteration there), it is about freedom. My freedom from the treadmill of treatments which keeps gp’s, consultants and the drugs companies fully funded and in the case of the UK consultants I’ve seen, clean pink shirts.

Well intentioned, they have all filled me with degrees of dread over the years from initial diagnosis to post op histology, to Gleason scores to nanoscopic, completely irrelevant in terms of worry, rises in my PSA. To think I used to have sleepless nights if my PSA bobbed around 0.04 to 0.06. How much unnecessary worry did I cause myself - when I should have been getting on with life - yet I did.

From diagnosis to about last summer, I travelled like Alan Whicker (for the youngsters on this site, he was a 1970s travelling presented with a weird moustache and the voice of a super cad.) I have been to really obscure places, done amazing things, spent a fortune on amazing meals out at top restaurants, bought brand new cars, had major house renovations, seen my children grow every day as I chose to stay and work from home.

The day I got the gig of my own consumer champion column in Bella magazine followed by about forty other different magazines, I was blessed with the ability to not have to commute. I could work from home, stop when I wanted so long as I got my columns done on time and, most importantly, be always in sight of my loved ones. It’s as if God gave with one hand as he slowly took away with the other. He provided serendipity snd gave me the power to completely change my life in 2017 when I divorced my wife of 34 years (don’t judge, there’s much more to the story) and move to France to marry my first ever girlfriend from 1982. Despite us only being given three years together, it is three years we so richly deserved after the circumstances of 82 - and her calm and dignified character is exactly what I believe has prolonged, not shortened my life.

Some may call it stupid. I believe it to be brave - and as I sit here, rather lay here on my death bed preparing for total kidney failure and an inexorable slide into oblivion, I just know I do not regret a thing. To have not done so, to have not been so bold, I would have forever wondered “what if?” I wanted to leave life on my terms and my terms I will leave on.

In the early days, this forum provided an amazing platform of comfort, reassurance and knowledge from some very great men, all of whom have passed on since. I cannot wait to meet them all. They assuaged my fear, calmed my angst and showed me, with respect, just how futile it was to worry about a couple of microscopic PSA rises. They were right. Men like Surspark, Alathys, Yorkhull and others, all wise, all strong brave men were not afforded some of the gifts of time I have been. They will be rewarded. Most also really suffered towards the end and after years medical interventions to their bodies (in the case of Alathys, he willingly gave his body over to various trials. I believe this helped him if not physically then psychologically.)

Compared to the pain many brave men on here have suffered, I consider myself so lucky - yet I might be a little premature here and suddenly my kidneys start working well enough to just keep me alive long enough for bone mets to do their worst. Still, I’m calling the tune and I want and will not have any further blood tests or treatments. They will serve no useful purpose save to stress me out. Just keep up my supply of Oxynorm 20mg thank you very much!

Who knows what the future will bring for any of us. At 45 on a trip to the garden centre to buy some compost, I never expected the phone call my wife took from the GP surgery to inform me my PSA test had come back at 8.89 would have such a profound impact on my life, my longevity. I expected to live an average lifespan. I expected to see and hold grandchildren and see my children marry. I just wanted an ordinary life.

Instead, I have found myself having written Father of the bride speeches for both daughters and bequeathing them their inheritance at the age of 58. There will be no grandchild joy for me, not wedding. This galls me to the core. Anyway, many of your privately messaged me and asked me to continue posting and I feel well enough (although constantly fatigued) to contribute more invective on you!

Long live you all brothers and sisters!

Bazza

 

 

User
Posted 03 Jun 2020 at 20:30

Bazza ,

What can I say , good luck with your journey , save me a pint
Barry

User
Posted 03 Jun 2020 at 20:46
I’m with you on the intervention thing. That’s why I’ve kept it to the bare minimum. Yes it will come back to bite me I’m sure but I’m still glad I’ve not been through even half of what you have. But I guess it bought you a couple of years in our G9N1 club. God bless you Bazza— you can only do what you think right at the time. My GP has constantly encouraged me to go with what I want and not just nod my head at consultants and take the medicine.

I hope your other daughter makes it. My birthday is on Sunday and the week after marks 5 yrs post surgery. I received 6 bottles of Shiraz today from a mutual friend of ours , and all I could think of was you. I’ll drink to you Sunday x

If life gives you lemons , then make lemonade

User
Posted 03 Jun 2020 at 21:52

Bazza

Inspirational as always. I can certainly identify with some of your comments. Take care.

Thanks Chris

User
Posted 03 Jun 2020 at 23:02

Thank you for that post. It means lots to be reminded that quality of life being central to all decisions is not actual a sign of madness! 

Not many can summarise the way you do or be prepared to appraise so honestly! The consultant that diagnosed my OH was wearing a pink shirt that day, so you also made me smile

 

Enjoy the time with your daughter  and wife. Strawberries sound delicious.

 

Clare

User
Posted 03 Jun 2020 at 23:46

Thank you for your most recent post - you are an amazing writer. I am so glad you are not in pain and that you have done many things that have made you happy over the years, including being with the person you love for the last few years.

As I have said before, I have valued your posts because they have so often mirrored our journey. We have also looked back on our life together a lot more recently, and concluded it has been pretty good overall and many blessings - lucky enough to have been together since we were teenagers.

I am fearful, that my oh is also struggling now, even though the kidney op seems to have worked. Now blood tests reveal other things and he has realised tonight, that like you, his medications seem to be counteracting each other and tonight he is taking none. 

I wish you happiness with your family and many more days.

Gill.

User
Posted 04 Jun 2020 at 09:48

Bazza, your post is so well written, covers a whole spectrum of life, highs and lows.

You are right to reach a point where no more intervention is wanted.

I am almost 5 years post surgery(next month), 3 years post salvage radiotherapy plus HT.

The thought of having to go back on HT or having chemotherapy etc. fills me with dread.

I hope your other daughter makes it over to see you.

 

Ido4

User
Posted 04 Jun 2020 at 12:19

Hi Bazza,

Thank you for continuing to write your posts, heart rendering as they are.  I hope you continue to feel able to do so for many moons to come.  So pleased to hear your one daughter is with you and I hope your other daughter is able to follow soon.

My husband and I reflect on how lucky we have been over our lives and how fortunate we are to be able to have so many good times to look back on.  

it was truly wonderful to read how you eventually married your first love from 1982, obviously meant to be.  Carry on reminiscing about all your good times and reflecting on the many joys you have shared with those you love and who love you.  

Long may you carry on being pain free.  You are an inspiration and I would have like to have had the pleasure of meeting you.

Angexx

User
Posted 04 Jun 2020 at 12:54

Bazza, have followed your story since joining this special club. Understand your feelings totally. You must do what your heart tells you and it sounds like you have done that.

Phil

 
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