HELP HELP! I'm dying......and I don't know when????

Troxly I understand your feelings, I felt the same, over time on hormone therapy and chemo I slowly get to live again. Not cureable is not terminal, hopefully we will have many more years to make the most of. I’ve found the mental struggle the hardest 

Hi Troxly, i Also have a non curable prostate cancer T4 ,life's a bummer but don,t think just because its not curable it can.t be maintained ,after hormone therapy  radio therepy and chemo my PSA is 0-1. Just because its not curable it does't mean you haven't got many years of living ahead of you.I know at least 3 other men who have the same and are still living a full life after many years .

Hang in there Troxly and don,t think this is the end ,its made me think this is the beginning ,my god am I going to enjoy my retirement ,got to go Im off Go Karting 

Always hear if you need to discus any part of your treatment 

Hi Troxly

Sorry about all what’s been heaped on you. Have you started any treat, if so what are you taking ? Your never alone in this battle there are a few on here with incurable PC, including me been fighting this thing coming up for six years, you only need to look at my profile to see what hefty scores I was diagnosed with.

The main thing is keep positive, don’t drop into the is it all worth it bracket, because it is, especially if you’ve got family, you will have bad days for sure, but take the good days when they happen.
Everyone on here men and partners will tell you if you need to talk, there’s always someone ready to listen give advice where possible, we’re all in this together just keep fighting, as I always say tomorrow or next week they may find a cure, so keep talking to us.

Hi joeven

Thanks for reply

I hear what your saying, I read your profile.

I understand, I'm 49, my kids are 15, I've been with my partner 4y. Still got lots left on a mortgage.

I've enjoyed a life with liberty, I've really considered my health on others. 

Clinging to life, at some point will massively impact those loved ones.

Prioritys change.

Looking to keep things stable next 12 months if I can, then reassess.

But.....no idea how to just enjoy the life I have, each day, on a daily basis with the reality of finacily knackered, physically altered, mentaly hampered.

The only thing extending it are drugs which alter me from the previous cave man I've enjoyed being? All the while deteriorating slowly?

I don't know???

Hi, thank you for reply

I read your profile, I understand what your saying.

I went to a cancer support group and lots lovely people.

There were lots of really possitive people there, saying how great new treatment is, and fighting and keeping hope and possitivity...those guys were the ones who'd cleared it or were looking to clear it.

I found it grating...

It made me think I need find bit more specific identification.

Knowing that the cancer had spread to other parts of the body is something that alters that internal hope.

Hi

49 is no age, it’s not a question of enjoying everyday, that just won’t happen, it’s about doing the best you can when you can. Have you asked McMillan about p.i. p. It’s a payment for the terminally ill, in a few years you will find you cannot do things you used to, this just helps.

At the moment your experiencing the why me, what’s next, when I was told I said just get name through Christmas, I didn’t think I would still be here, ok I’ve had bad days and the hormone treatment throws you off a bit, but bouncing back is a great feeling, knowing it cannot get the better of you. 
It’s early days for you 49 so your strong, people like us may be incurable but we can live for 5/10/15 years plus so keep your spirits up.

Stay safe

Joe

Hi Troxly, welcome to the site, when I was first diagnosed 18 months ago my wife and I had the same feelings "a death sentence" during the first discussion with my oncologist he put me right, In curable is not a death sentence it's a change of life style.

after joining this and the incurable group I soon realised he was right, so yes the hormone and radiotherapy treatments forced a change of life style to a certain amount, but I still do 98% of what I did previously.

Help both financial and mental can be obtained from McMillan, just pick up the phone and ring them, even if things get on top of you remember are not alone, life is good so live it to the full.

All the best Ulls  

Please don’t overthink the outcome Troxly. I know you are frightened as I was last week. But sharing your thoughts and symptom's here is a great way to support you with your thoughts. We are all frightened and waiting to hear what is going to happen next. Reading everyone else’s messages has really put me on a positive outcome and I think it will do the same for you. Comparing one another’s results is a good way of thinking what the next step is going to be. My Gleason score was not as high as yours but that was 4 weeks ago I expect it to be more now as I have just been today for a CT scan. The cancer cells surely have spread more in 4 weeks. This all came as a bombshell to me after visiting my local GP practice supplying a blood sample for a psa test which came back at 60, Pirad score of 5 gleeson 4-3. Still worried about the outcome but I am mentally in a better place. It would help if my local GP could prescribe something to numb the feeling of my abdomen to make it feel more comfortable. Most of the time it’s like the innards of my stomach is in a cement mixer. None of us know where we are on this journey back to normality. I am sure we are all going to get there including you. Stay strong, here for you if you need to share you thoughts. I don’t know about treatments as yet as I have not received any. I will keep you all posted how it goes on my page.

stay positive

Arnie.

Thank you.

I'm past why me, it is me....

I'm floating around the 'what now???'

Think the hormone injection is actually affect my mood???I've had injection nearly 4 weeks ago...

It's been great reading some posts on this forum, and has really helped.

Thank you Joe 

Hi Arnie.

I asked the specialist nurse about the Gleason.

She said it remains the same.

Think its how agressive and pumped up the cancer cells are?

Think mine want to fuck me up!!!

Think its just mother nature....

Woman get the menapause, men get kicked in prostate! (I believe).

I'm kinda hoping that feeling in your lower belly is just pressure from prostate on your bits n bobs??? I was given 2 weeks of tablets before hormone injection and within 4 days I stopped pissing blood (claret) and gore....

Was like miracle.....also reduced that weird discomfort in my abdomen.

I'm hoping your tests and results come back as positive as they can be in a shitty situation.