When the drugs do more harm than good - the choice between life and existence

Hello Ever hopeful 

Well that's some post and I feel for you an your wife - I can understand just what you have been through in 9 years and it's taken it's toll.

I think given the choice many folk would look at quality of life now over length of life where the treatments cause more "harm" than good. I am all for the statement "life is for living".

I am aware that new treatments are being researched all the time and it's worth keeping in touch with your oncologist to check on any new developments and clinical trials.

Please do keep in touch and let us know how you get on. If you and your wife do need any help or additional support please do remember the Support Line on 0808 808 00 00 (8am to 8pm will be able to help).

I wish you and your wife well moving forward.

Best wishes - Brian.

Hi Ever hopeful sorry to hear you have been struggling.  I also had Enzalutamide last year and found it almost intolerable.  I was lucky that I switched and had SABR as the sternum was an easier target.  Would I go back on Enzalutamide- not sure.  It took over 3 months before I felt clear of it.  Quality of life has to be up there with the decision making, but it is a very tricky one.  It sounds like you have made the right choice for yourself and I wish you all the best.  David

Sorry to hear what you are going through. Thinking of you 

I am getting more and more depressed. I live at the top of a hill and my knee has also been giving trouble - apalutamide again? - Going downhill is really difficult and uphill is limited by my heart problem. I really am losing it. Apalutamide took my licence away and with it all my freedom.

Hello Ever hopeful 

i appreciate your situation and understand how you feel. Help is available but in this modern age you need to reach out for it. Can I suggest the following;

* Anxiety UK - They can help you with your feelings on 0344 477 5774 or e-mail support@anxiety.org.uk. Their website is anxietyuk,org,uk.

* Our  Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) is there to provide confidential emotional support, practical support or just a listening ear - it's a free call - they are there for you.

My message box is open if you wish to contact me directly and I will see what extra help I can get for you.

I hope this message helps.

Best wishes - Brian.

Thankyou Brian - I have no idea why but  I have really gone downhill today. My wife and I are going to go out shortly but I do wonder what the people are going to make of the sight of a grown man crying as we walk down the esplanade.  I will give the support line a call but I think I'll try the sunshine first before the Met Office declares summer to be over.

John.

John (Ever hopeful) 

You have cancer. sadly 1 in 2 people with cancer have some form of mental health issues. I have had 2 weeks during my Hormone Therapy where I wanted to give up - it's part of the journey.

I am a 69 year old man - I was at Joe's funeral last Wednesday crying my eyes out in public. We have emotions as men and I am proud to be able to show mine and cry. I do it quite often when I am writing posts and am not ashamed to confess I do it.

We all have "dark days" - however the sun is shining - take your wife's hand, have a walk, have an afternoon treat whilst you are out cream cakes, a beer whatever. Celebrate life to the full - life is short and very precious - enjoy it as much as you can.

We are here when you need us.

Kind Regards - Brian.

Hi John,

I have been coping with a much lower level of despair because I damaged by back during my radiotherapy and, coming up to 2 months later, I am just about able to walk short distances.

There are no easy ways to cope with the sort of depression this brings on. 

In terms of depression, and to use an Americanism, this is not my first rodeo. I can't tell you what works for you, only what has helped me.

Firstly, talk about it - and cry, don't worry about that. Talk about it to anyone you trust and is prepared to listen. Getting mildly squiffy may help, if the drug treatment allows it, because feelings flow more easily.

Second, understand that turning feelings into words focuses the mind. It is quite possible that you will set things into a new light just by doing that. When you come up with a cheering idea, don't lose it. Write it down and savour it.

Third, although difficult, walking is good. If it is really difficult, then break it down. About 3 weeks ago, I couldn't move far at all, so I started walking round and round my dining room table. That helped, although the table isn't that big, because I could see I was doing something.

Fourth, we discussed the crying, so now we get to the swearing. Swear about the position you are in. Swear about your knees. Curse the hill. Again, speaking purely for myself, it almost made me think I was gaining control.

Fifth, treats. Do something that you like. Oddly, I find that Petula Clark's "Downtown" which, like me, you may remember, contained good advice. 

Find your own "1-5" actions that work for you. Write stuff down. It is quite likely that, within a few months, you will look back and wonder how you felt that bad.

If you run out of people to talk to you, call the Samaritans on 116 123. They are not just for people who are thinking of suicide. They are there for anyone who is hurting, and needs to talk. They are absolutely cracking listeners. If's it's 04:00, and waking your wife up to talk to her seems a bad idea, then call them. Talking it out helps.

Vent on here. You might get people like me bothering you with unwanted advice. You can swear at us - in a private message, of course.

Lastly, on a practical point, you mentioned that the lack of a driving licence had taken away your independence. I have no idea where you live, or how close the things that you want to be independent to reach are, but if you find it difficult to get to things close by because if the hill and knees, then you might want to consider hiring a mobility scooter (if the law allows) or a motorised wheelchair. They will certainly increase your range, and you may only need them for a while. By hiring them, you get to try them out.

If any word of that helps, it will have been worth doing.

Keep on keeping on.

 Ever hopeful I'm with you and Brian Millibob , if it was me I'd certainly go for the 'reasonable life'.

As you said:

Ever hopeful said:

I am now just trying to live up to my handle " Ever Hopeful" but it isn't easy.

Try to get as much out of life while you can.

I'm sure I'm not alone when I say this "The whole Prostate Forum is rooting for you."

Take Care 

 mstev2 if it wasn't for the opportunity to vent now and again and again...

As you said:

mstev2 said:

Vent on here. You might get people like me bothering you with unwanted advice. You can swear at us - in a private message, of course

It does help, getting it out of your system, well it helps me.

I'm also still keeping my "Cancer Diaries", as I call them.  I'm into number 21 now, in just under 4 years, big thick A5 diaries.  Full of proper venting for my eyes only.

I had a stupid idea of writing a book from all my diaries... When I get around to it...

No names have been changed to protect the innocent!!