Well I'm still here after 9 months

User

Posted 04 Oct 2015 at 15:56

When I was diagnosed in January 2015 with a 235 psa and told it had spread and was incurable I thought I was going to die in 9 months.

Well here I am still here after 9 months and on Prostap and Enzalutamide with a psa of .03 and really just with hot flushes, less energy and just wondering what to expect over the next year.

I think my biggest issue is constantly thinking about what's going on and what's going to happen.

I don't get any extreme mood swings but I do feel pretty flat about life generally and kind of can't get enthusiastic about planning things.

If I could just forget I've got PCa and carry on with the tablets and all I'm sure I could enjoy life a bit better.

Sorry I'm just moaning a bit and worried I guess for the future.

Paul

Edited by member 05 Oct 2015 at 07:04 | Reason: Not specified

User

Posted 05 Oct 2015 at 08:14

Paul

Never say sorry for expressing how you feel.

You're beating the odds well, keep doing that well long term

In the earlier not so bright days I eventually put aside the long term planning as cancer consistently reminded you don't know what's coming around the corner. However that doesn't mean you can't plan for the day to day pleasure activities and the holidays or whatever takes your fancy.

Fighting cancer is so you can enjoy life.

Ray

User

Posted 05 Oct 2015 at 08:50

Hi Paul, I think everyone with PCa has thoughts like yours but I think that frame of mind is to blame with some of us.

I know it is easy to say as we are all different and each of us handle situations in a different way but you are on a better road now than you were before as you are still with us and fighting this dreadful disease. Try to have positive thoughts rather than negative ones, as Ray says make shorter term plans so that you can look forward to something happening "soon" enjoy every day that you are on this planet.

Enjoy your family as I am sure they are worried for you just as much as you are worried for them, do things today or tomorrow but have an eye on the future, just imagine next year maybe or even longer. With today's treatments your life expectancy is good so do not waste precious time worrying as that does not change the way things are.

I used to be a fireman and whenever we got a callout we knew some information about the incident but it was not until we got there and assessed the situation that we could deal with it. My point being is that on route your mind imagines all sort of scenarios but nothing changed until we could get there and deal with it.

Stay positive Paul, remember even in good health life is short, make the most of it.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 05 Oct 2015 at 09:46

Dear Paul,

I certainly understand how you are feeling. I too am scared to plan or look too far ahead, just in case.

All of us on here must feel like this.

For those who have been successfully treated over many years, perhaps will look back and wish they they had not worried so much, but then again still worry about what is coming up, there seems to be no escaping it.

It does does put trivial things into perspective though, and helps us to appreciate the good days.

All the best to you.

Alison

User

Posted 05 Oct 2015 at 11:05

It's an understandable emotion Paul and better to talk about it, identify it so you can begin to move on when you can. I was given an initial diagnosis of advanced metatastic PCa and 18 months to 2 years to live and I spent a lot of time thinking about the meaning of this and getting an understanding of it. So for me coming to terms with the ultimate reality was really important to focus back on life. I didn't have unrealistic dreams of survival but focused on the quality of my life rather than the quantity. Eventually I felt and feel really at ease with that. Goals were largely short term, realistic and achievable. I did not set myself up to fail with goals about five year survival or any such long term goal. I just got on with my life.

Suddenly I found I had done two years was still here and was leading a fulfilling life, full of the important and meaningful and finding friends and family so supportive and helpful. Life felt positive and affirming. When I have to i can focus on the disease and its impact on me. My thread here, 'ever decreasing circles' is an expression of the inevitability of decline over time and there are difficult times. But hey I am approaching four years now and still not reached chemo or other treatments. My focus on life gives me focus and meaning. I hope you can find the same.

User

Posted 06 Oct 2015 at 00:28

Paul,

I know just how you are feeling. I feel to same a lot of the time.

Stay strong and post your feelings as much as you like, you will always get support from me and many others on this site. There's nothing wrong with having a moan.

Steve

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User

Posted 05 Oct 2015 at 08:14

Paul

Never say sorry for expressing how you feel.

You're beating the odds well, keep doing that well long term

Fighting cancer is so you can enjoy life.

Ray

User

Posted 05 Oct 2015 at 08:50

Hi Paul, I think everyone with PCa has thoughts like yours but I think that frame of mind is to blame with some of us.

Stay positive Paul, remember even in good health life is short, make the most of it.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 05 Oct 2015 at 09:46

Dear Paul,

I certainly understand how you are feeling. I too am scared to plan or look too far ahead, just in case.

All of us on here must feel like this.

It does does put trivial things into perspective though, and helps us to appreciate the good days.

All the best to you.

Alison

User

Posted 05 Oct 2015 at 11:05

User

Posted 05 Oct 2015 at 14:01

This forum is of so much help to me.

ONE of my problems is the feeling of being on my own (medically wise that is) this is probably a totally unfair criticism but since my RT has finished other than having seen the Onco. after 3 months with my next appt. in 6 months, thats it.

Its trying to learn to live with whatever thoughts you have, and finding that place called acceptance, which I find quite often but then take the wrong turning.

There is so much conflicting advice, even from the professionals, and trying to get the answers sometimes is like pulling teeth.

I have not had the guts to find how long I have, apart from the fact that my wife always insists on coming with me, and it seems so often they are proved wrong anyway.

As has already been said, even in good health life is short, so we should make the most of it, and enjoy it whilst we can.

I don't want this to sound as if I am knocking the professionals, which I guess I am, even tho. I know they are doing their best, I suppose I want them to waive a wand and make it all go away.

I think I had better stop now, I can see two guys in white coats calling for me !!!!!

User

Posted 05 Oct 2015 at 16:37

Hi Old1, I am a bit like you as am half way through RT and will be in the same boat ie seeing once 3 months after that then who knows?

Not knowing what PCa you have I can only view it from my experience and that is with diagnosis in February HT started straight away with delays starting RT. My cancer is confined to the prostate but was told it is aggressive, PSA was 63 and at last test 2 months ago it was down to 0.05.

If folk are told it is uncurable but treatable there is no definitive answer as to how long you might have but the only way, as far as I am concerned, is to deal with each problem/situation as it occurs (again it must be my fire service training) live for the near future as best you can, share life and enjoy life with all your family as much as you can

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 05 Oct 2015 at 18:17

I was going to give a quick answer to Paul and say moan away if it make you feel better but really I want to say it to all of you who have replied and feel like Paul does at the moment.

John didn't have anything like you have, and appears to have been successfully treated but that doesn't stop me worrying about the future and whether it will come back or the treatment itself will have caused bowel cancer.

John doesn't seem to worry, I don't think he even realises that I do.

Keep your chins up you lot. Don't let it beat you into submission and spoil life's pleasure that are still there for you to enjoy

We can't control the winds - but we can adjust our sails

User

Posted 05 Oct 2015 at 19:01

Originally Posted by: Online Community Member

I have not had the guts to find how long I have, apart from the fact that my wife always insists on coming with me, and it seems so often they are proved wrong anyway.

Looking at your profile Old1 it seems you are on a curative treatment path so I think that the question "how long have I got" will have nothing to do with prostate cancer and everything to do with avoiding the proverbial bus!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Oct 2015 at 23:44

Thank you all for reading my post and for the support.
It does so help to be able to have a good moan every now and again and to receive positive support.

Paul

User

Posted 06 Oct 2015 at 00:28

Paul,

I know just how you are feeling. I feel to same a lot of the time.

Stay strong and post your feelings as much as you like, you will always get support from me and many others on this site. There's nothing wrong with having a moan.

Steve

User

Posted 06 Oct 2015 at 05:44

its been good to read all this have related to lots what you all have posted, well am nearly upto week one of the chemo, so far extra issues are lots of wind, aches around collarbone, more hot flush's then go chilly, good news in am still going in to work may not be doing a lot but it still feels a lot
doing a bit of forward thinking and planning next years summer holiday
running as not been as good this last week but will be out on the track tonight with my little group, and put them through some 500metre intervals

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 06 Oct 2015 at 07:09

Hi Paul

I know exactly where you are, my full on " treatment" has ended and now I am in maintainence " treatment" ie zoladex/biclutamide. I want to plan so much as my prognosis hangs over me and I want to be optimistic however for many things I feel that I may only have 1 or 2 years where I am fully ok. Like you I run and I still am aiming for a big race next year however my knees have started playing up and have no idea if it's overuse, age, cancer, drugs or a combo that is causing this and general joint stiffness in ankles, fingers, wrists etc so most nights I lie awake thinking about how long have I got not for the fear of not being here but the fear of not doing the things I want to before my body physically gives up. Running had been my salvation for the first 9 months, I hope I don't need to find another one!

Got to have a PSA test today and dreading an increase and the wait of a few days to find out, supposed to be back at work soon but my mood will kill the positive atmosphere that is needed in my work world so not sure how they will cope with me, I am seeing a shrink and have sleeping pills already but know in my heart that I just have to knuckle down and get on with stuff rather than waste time worrying, easier said than done.

On the plus side however taking my 15 year old up Snowdon on Saturday as he wants to climb a mountain and I thought I had better do it with him whilst I can.

Sorry for a bit of a hijack of Paul's post, didn't intend it to be.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 06 Oct 2015 at 08:23

Thanks guys
If it takes my stream to get you posting then I've achieved a good thing.
Steve many thanks and I'll do my best. I always appreciate your support.

Nidge, sorry to hear about the aches and pains and hope you can run through it, keep posting.
I get too many hot flushes and am trying Sage Tea just before bed, unfortunately it's quite yucky and supposedly takes a month to work. I'll let you know.

Kev, there's no hijack were all in it together. Hope the psa is ok today, let us know. I know what you mean about it being hard to stay positive but if it's bad I just try to get into running mode (without the running) and just get on with things. Enjoy Snowdon.

Much of the advice about planning shorter term and living for the day/week is sensible even for folk without PCa.
I'm off swimming today.

Edited by member 06 Oct 2015 at 09:11 | Reason: Not specified

User

Posted 06 Oct 2015 at 10:51

My sincere apologies Paul, I certainly hijacked your post, it was not intended I can assure you.
You are all my inspiration I could not do what some of you guys do, I take my hat off to you.

Irun you were one of those that replied to my original post, and you have since then always been one of those that I have looked up to, and always will.
Using your words to me "be strong my friend and love every day"

Thank you Jonsan and Puffingbilly for your kind thoughts, you are right Jonsan re. keeping our chins up.

Thank you Lyn, I do not know (probably due to my ignorance) how you arrive at the curative treatment path prognosis, its great to hear, and has done me no end of good ! I look forward to avoiding the proverbial bus tho. !!!

User

Posted 06 Oct 2015 at 16:07

Well this has been a really good thread for lots of different reasons especially the variety of comments relating to several assorted topics but all linked by our experiences.

Tons of wit and goodwill, thanks everyone it is so nice that the forum speaks as it finds without any bad feelings and mainly positiveness is written in between the pearls of wisdom.

Cheers Chris/Woody

Life seems different seen upside down, take another viewpoint

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