The end - straight to palliative care!

  • 15 replies
  • 119 subscribers
  • 1271 views

I don’t remember much about my initial diagnosis, but I do recall the words palliative care being used and my mind almost exploding with horrible thoughts.  Totally consumed with the death sentence, my wife and I went around like zombies for a few weeks with nothing else seeming to be able to take away the bad thoughts.  I was convinced I wouldn’t see the next Christmas. How I wish I had known about this site back then and the amazing support that people on here are able to offer from real experience.

The next stage was talking to my oncologist who was quite upbeat and mentioned lots of ‘tools in her toolbox’.  That all sounded frightening but we were cheered up when she talked about 5 years (believe me, 5 years sounded so much better than palliative).  So the journey started.
Initially 3 monthly Zoladex jabs.  How worried was I that it should be 12 weekly not 3 monthly and remember having a ‘discussion’ with the GP receptionist that it was possibly life and death (I now really don’t think it matters,) but it seemed very important at the time.  We went on a prearranged holiday and I returned straight into Chemo.  For me this was the hardest part (but most people sail through it) and a very low point but we are all different.

Amazingly, I made Christmas and even started to think about another year and with chemo safely behind me, I might even make next Christmas.  RT started in Spring and for me that was easy, but just incredibly boring doing 37 daily trips to the sunbed.  On my first session ‘staying alive’ was playing which I found amusing, but the radiologists were horrified about!   A few side effects but generally not too bad.

All through my adult life, sex seemed to be a major part of who I was and the thought of ‘not being able to do it’, was completely alien.  I can’t recall when ED started but amazingly it wasn’t a big issue to us.  I had this sneaky feeling that my OH wasn’t overly bothered anyway, so that took an enormous pressure off me to ‘perform’.  We are probably closer now than we were before cancer.

Why am I writing all this?  Well, it is to explain to all the newly diagnosed guys that even with a bad initial diagnosis you can make next Christmas!  Has life changed? Yes, obviously, but not all for the worst.  It wasn’t as we planned and we have had to compromise, but that is life.  
Overall, since my original diagnosis (8 years ago today) we have had a good quality of life.  I still get anxious when I get my PSA results (due next week) but it is now in the knowledge that there really are options still in the toolbox.  Who knows, I might even make next Christmas!  David

  • What a brilliant post David  and one which my husband and I can also relate to. We are only 4 years, 7 months and 19 days into this journey with an initial incurable but treatable diagnosis. Happy anniversary to you and I am sure you will have another Christmas with your family so stay strong and positive but take things one step at a time. Like you, we want to give back to others and say that there is life after diagnosis and that life can be good. Treatments have made us modify what we do but we still enjoy ourselves and live much more for today. Keep posting as your contribution is invaluable.

  • Hello David ( 

    What an amazing and honest post - life goes on and 8 years from your "death sentence" you are thriving and life is good. I am somewhat behind you at 3+ years but I know just where you are with that post and I could have written most of it myself!!

    Stay strong, think positive and thank you for all you do for the Community - it's people like you who make this Community what it is.

    I hope I can write this post again in 5 years time - please do remind me if I forget!!

    Best wishes to you and your family - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hello David2017, what lovely post it will give hope to us all, I  struggle when the psa test is due,my husband just goes with the flow.

    Hope you have many more years.

  • Hi David2017, What a truly lovely post, and you are spot on about this Site. It, and the wonderful people on here have helped me and many others through initial diagnosis to learning to live with this disease. I will be always grateful to you all for getting me through the very darkest of days. God bless.

    Majestic

  • Hi David,

    Thanks for that brilliant post. It's a great encouragement to all those members here who are just starting out on the journey. I'm a year or so behind you as I was diagnosed in late 2018 but still going strong.

    Good luck with the latest PSA test result.

    Yesterday is history, tomorrow is a mystery and today is a gift.
    Seamus
    (See my profile for more)
  • Hi David. What a great post. Have just read this to hubby ( joined the 'club' 2 years ago) and it definitely is spot on. We have had a really good chat about this , that , and life in general.  So thanks again for the honest post. 

  • Oh my word, what a fantastic and uplifting post. It is such a joy to hear someone who took the diagnosis and gave it the disrespect it truly deserved. I am of an age where I wasn’t even allowed to use the C word and when it slipped out once when I was about 6 years old,  when my father was trying to talk to me about my mums ill health I got what I think was the one and only slap my father ever gave me.
    I was diagnosed in November of last year with T2 prostate cancer but instead of doom and gloom that I would have expected not so long ago the consultant was all about curative treatment and general positivity. I am awaiting my first PSA test after my prostatectomy in two weeks time but whilst I am apprehensive I am not scared, and all because of the skills and dedication of a wonderful team of doctors and nurses.

  • What a great post David. On behalf of my husband I have had numerous discussions with the GP surgery whether the injections should be every 12 weeks or every 3 months. The hospital says 12 weeks and the GP says 3 months. I have stuck to my guns and so far winning the battle. I panic if he is an hour late having it, let alone a week . 

  • Wow  

    you have certainly put things into perspective thank you . 

    we are 12 months since diagnosis . I say we as it’s a couples diagnosis / illness / life change . We were planning for the end but we are still here. 

    So for us it’s baby steps moving back to a “new norm”  and every blood test is frightening. 

    I have said it before but I will again . THANK YOU ALL for supporting us this last year . I honestly don’t  know how we would have coped without you all .

    Huge hugs to each and everyone off you 

    Liz & OH xx

  • Hi,

    What a fantastic post. I'm sending all the positive vibes or Karma that I can muster to you. Sex has always been a big part of our relationship, but we have found ways round this and like you we are so much closer and dare I say "in love" 

    All power to you both,

    Psticks