Sorry for the rant

Hi Slartibartfast, it sounds as if you are at a very low point in your prostate cancer journey. I fully understand what you are saying by mentioning the quality versus quantity of life debate! My husband was treated ‘with the intention to cure’ ie no guarantees! In those first months he was told various length of time for HT - ranging from 6 months to 3 years. By 18 months he was literally rock bottom. Even if the oncologist had not suggested stopping the HT I think he would have just not turned up for the next injection - the side effects were just intolerable - like yourself ‘he was feeling crap all the time.’

so, we are just coming up to his first PSA test next week since stopping the HT. we’ve had a summer in which he has become increasingly physically energetic and more mentally ‘with it’. But, although he is obviously so much better, I have been consistently haunted by the fear that he might have finished the HT too early and undone the good of all the treatment.

i guess we all reach a point when we question the right way to proceed with this disease. But, I think the only thing we can do is listen carefully to all the medical advice and then let the person with the diagnosis decide for themselves and respect that decision.

if my husband has to go back into medication, though, I will get him to ask whether another drug might suit him better and/or if there is anything they can do to mitigate side effects. Is this an option for you? 

I hope you are getting support as you travel on this prostate cancer journey? It’s a tough journey with many stumbling blocks on the way! No need to apologise here - we all have those really down times. I’m reaching out to hold your hand ( metaphorically) and hope that you will know that , here, people recognise your struggles and that you are not alone in them. 

Hi Slartibartfast we have spoken in the past.  Sorry to hear where you are and apologies if I am repeating things I have said before.  I was diagnosed in March 2017 with treatable PCa and went through chemo, RT and HT.  There were times where I did wonder if it was worth having the treatment. I guess I tolerated the side effects of HT better than you but used to have 5/6 hot flushes during the day and night.  Fatigue yes, we used to be able to walk 10 miles but I really struggled doing 4 miles.  I got exhausted playing tennis but have kept going.  Then my PSA started to creep up and the consultant suggested an additional HT (Enzalutamide) and I read the list of side effects which include Fatigue and hot flushes - great.  I have been on this new drug for just over 4 weeks and I am now down to walking about a mile at a time, hot flushes have increased to 7/8 a day and I haven’t thought about the other side effects (stroke/ seizure heart issues etc).  I just don’t like the sound of giving up and now have a target to get fitter.  Luckily I am generally positive and will push myself to keep up my steps (albeit in more frequent slower walks), I go to Pilates once a week and this week played a game of tennis ( luckily we are all old and therefore the expectations are reduced) but we managed to put the world to right over a cuppa afterwards!

I don’t know anything about your circumstances but are you able to exercise, socialise, eat well etc.  Try and stay positive and come back with anything as I am sure others will offer support.  Best wishes, David

Thanks for the reply.
Fingers crossed for your husband

Thanks for the reply. I was just feeling particularly down about it all.
Having a rant made me feel better
I wont give up even though I cant really exercise due to bone pain but I'm still walking the dog as that has to be done.

No problem.  I think we all get down and pain multiplies things.  Hopefully the dog appreciates the walking and shame he doesn’t realise he is helping you.  Take care my friend.

Hi Slartibartfast,

Ranting is good for the soul and mind . So keep ranting. My OH was diagnosed in March and was prescribed Prostap every 12 weeks and then Aberaterone /prednosilane in July . He is pretty fatigued but pushes himself to walk at least 10 miles a day. He is going to start some gym work as his  upper muscle tone is poor and the feedback from the oncology team is to keep going but add in some stress exercises.

We also use the local Maggie Centre who have been amazing supporting us both  it might be worth checking if you have somewhere you can speak openly about your feelings without being judged .

best wishes and keep in touch

liz & OH 

XX

I am so pleased that you have been able to put how you are feeling into words on here. Just remember that they have to show any side effects that have been reported and it doesn't mean you will get them all or any. If you read the side effects of any medication it is enough to make you not want to take them. Try and focus on the positives as you are doing so well. A rant from time to time is good 

Hello Slartibartfast 

I have been out of touch for a few days and am just catching up - I do hope, and I am so sure you have reached your normal calm self now.

However just in case - and for future reference:-

* Our support line is there for you on 0808 808 00 00 (8am to 8pm 7 days a week) - it's free and they are a great set of people.

* How about a "Buddy" - someone to chat to once a week - we can link you with one of these and you can talk about anything - the main thing is you can get "stuff" off your chest - here's the link:

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-buddies

* We also offer free counselling and again - here's the link:

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

I am also available off line - my message box is open - we are all with you here and want the best for you.

Take care and best wishes - Brian.

Thanks. I’m feeling OK now. I bought a new motorbike. Gives me something to focus on and look forward to

Great news - I am a bit out of touch being on holiday - but I like to look after "my flock".

After bring a passenger on my brother in law's Laverda and then his Moto Guzzi I can understand how you feel - personally I am sticking to 4 wheels!! .

Great news that you are back "on two wheels" and on track.

Take care and best wishes - Brian.