hi all
my company is organising a visit to a Prostate Cancer research lab, I have put my name forward to go and if selected we will visit in October, it is being linked with Movember, at the mo I am practising growing a tash before taking part, cheating maybe
the other bit that I have in my head is, why am I bothering with HT, after being refused the chemo not going to go into it all again, I just wonder why carry on with any treatment
the hot flushs sometimes get me down with how bad they are, in the night seem to have more than in the day
loo visits have not got any less, feel more tired, energy levels are worse, aches in my hips and spine
headaches have virtually gone.
my point is before I started this treatment the only issue I had was loo visits, with slight aches in hips and spine
I could run better and generally felt better
so what really is the point of HT, yep it might extend my life but I feel that it is also ruining my life
nidge
run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it' |
User
Sorry nidge to see you are feeling down.
Pain, tiredness and debilitating issues will cloud your thoughts.
Why bother?
Well, if the HT is designed to extend your life then who is to say that during that extension, the chemo ban won't be rescinded or another more effective drug or trial won't come along that would be of great help to you.
Perhaps if you continue with the HT and come out the other side having benefited you'll be glad you went ahead?
We can't control the winds - but we can adjust our sails |
User
nidge
Can only speak for myself here. At diagnosis not so far down the road as you. Although on those days G8 was met with we try to buy you time. I can take you to the very spot on hospital grounds that I made the choice of go back in the department and take the casodex or throw the months supply down the loo. I took the pill but for many weeks still seriously thought about forget it let nature take its course. Since then the words "you're doing exceptionally well" are repeated. Yet throughout that time and I guess it will continue I ask myself were/are the side effects worth it all. To start with all the HT ones then the ongoing ED and water works frequency that does impact on the quality of life.
So 10 plus years on was it worth it? I'm not going to give a resounding yes but on balance yes it is worth the fight and putting up with a lesser of quality of life.
What helped/helps me is actually what I moan about - side effects. As it prompts the thought the crap you (cancer) throw at me isn't good enough by a mile and more for me to throw the towel in. You will find your own reason not to give in just give it time.
Good luck
Ray
Edited by member 24 Sep 2015 at 21:17
| Reason: Not specified
User
Hi Nidge,
When you talk about how you feel, I have felt the same over recent months. I honestly think I felt better two or three months ago. I seem to be getting worse all the time. Not just tiredness but real fatigue. Aching hips even when I'm walking, no strength or enthusiasm to run. But, I will stick with it if it improves my chances of survival.
All I can say is, keep fighting, it will be worth it.
Steve
User
Nidge
Keep your chin up buddy
Don't give up
I'm also as you know on HT and I hate the hot flushes, I sleep max 1.5 hrs per night then I throw off the covers only to put them back on again cos I'm cold.
When I'm out I suddenly sweat like a pig, take off my jacket and am then freezing, my head can be hot but my body is cold, my body can be hot my head is freezing. It drives me mad but I think if that's all there is to it what the hell. Running with hot flushes is weird but I get through it. You are much more capable that I am so you can do it too.
I'm currently trying black cohosh liquid form but you can buy it in liquid form. Other stuff my knowledgeable friend tells me about (she has kicked cancer through diet) is sage teabags and soya (in form of Tofu or soya) all are good for reducing hot flushes.
Like you I would give anything for a full nights sleep.
Don't despair mate you are one of my heroes.
I've just done another half marathons but in 35 mins longer that my best last year, I finished it and was really p'd off but 2 weeks later I'm determined to go back in and do it better next year with more training. Keep it up its worth it .Nidge.
All the best
Paul
User
A quick thought, and I may well be talking out of the back of my head (or somewhere) but I wonder whether those of you that suffer the hot flushes etc would benefit from HRT cake?
The recipe should be on the internet. It's full of seeds etc and I'm sure it helped me. I took no drugs during my hot flush time but relied on evening primrose, the HRT cake and things like that.
I found that I couldn't bear skin on skin contact (I usually sleep with one hand under my cheek) so I put a muslin square over the pillow so that my hand didn't touch my skin. It also gave me something close by to mop my face with.
It became such a habit that even now around ten years later, I still sleep on a muslin square and even take them on holiday.
A water bottle filled with chilled water kept close is helpful and portable. Hold it in your hands, up against your wrists where the blood flows.
I know that they now sell chillows (pillows that can be chilled) which might help
We can't control the winds - but we can adjust our sails |
User
Hi,
I usually carry round a small pocket battery operated fan which helps a lot if I need it.
If anyone asks, I say I'm having a hot flush which usually causes a laugh but when you explain it's because of cancer treatment, they understand.
Steve
User
Has anyone tried Depo Provera, as I have read it can be quite effective for hot flashes.
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/medroxyprogesterone
Roy
Edited by member 25 Sep 2015 at 10:05
| Reason: Not specified
User
Hi
If you haven't already done so have a look at the thread:
http://community.prostatecanceruk.org/posts/t10994-Use-of-cyproterone-acetate#post134238
Alan
User
Hi Nidge
Like Paul/Healey I have hot flushes all day and night in exactly the same way and, even before being diagnosed, have had to visit the loo for a pee at least 8-10 times each night and since starting HT and now RT with having a TURP procedure which has not decreased the need for going at all.. I just consider that it is "normal" now and although I am constantly tired muddle through the day and occasionally take a catnap whenever possible.
It is normal to feel down every so often (even if we are 100%fit) so my way of thinking is that I am glad to be alive and fighting this crappy disease than giving up and being accepting of it. I know you do not feel that way but I have to snap myself out of negative thoughts and switch to positive ones. My wife is a constant source of inspiration and is always encouraging me with positiveness.
Keep fighting Nidge and stay on top of it!!
Regards Chris/woody
Life seems different upside down, take another viewpoint.
Show Most Thanked Posts
User
Sorry nidge to see you are feeling down.
Pain, tiredness and debilitating issues will cloud your thoughts.
Why bother?
Well, if the HT is designed to extend your life then who is to say that during that extension, the chemo ban won't be rescinded or another more effective drug or trial won't come along that would be of great help to you.
Perhaps if you continue with the HT and come out the other side having benefited you'll be glad you went ahead?
We can't control the winds - but we can adjust our sails |
User
nidge
Can only speak for myself here. At diagnosis not so far down the road as you. Although on those days G8 was met with we try to buy you time. I can take you to the very spot on hospital grounds that I made the choice of go back in the department and take the casodex or throw the months supply down the loo. I took the pill but for many weeks still seriously thought about forget it let nature take its course. Since then the words "you're doing exceptionally well" are repeated. Yet throughout that time and I guess it will continue I ask myself were/are the side effects worth it all. To start with all the HT ones then the ongoing ED and water works frequency that does impact on the quality of life.
So 10 plus years on was it worth it? I'm not going to give a resounding yes but on balance yes it is worth the fight and putting up with a lesser of quality of life.
What helped/helps me is actually what I moan about - side effects. As it prompts the thought the crap you (cancer) throw at me isn't good enough by a mile and more for me to throw the towel in. You will find your own reason not to give in just give it time.
Good luck
Ray
Edited by member 24 Sep 2015 at 21:17
| Reason: Not specified
User
Hi Nidge,
When you talk about how you feel, I have felt the same over recent months. I honestly think I felt better two or three months ago. I seem to be getting worse all the time. Not just tiredness but real fatigue. Aching hips even when I'm walking, no strength or enthusiasm to run. But, I will stick with it if it improves my chances of survival.
All I can say is, keep fighting, it will be worth it.
Steve
User
Cheers guys
Just been feeling a bit fed up
Keep comparing how i was just a few months ago
Been for a run with my group tonigh was fine till i got home n went to get out of car and the back pain started it just made me so mad
Told wife how i felt and she said you normally come back buzzing talking about who did what
Anyway after my shower i have got my self back on track
Nidge
run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it' |
User
Nidge
Keep your chin up buddy
Don't give up
I'm also as you know on HT and I hate the hot flushes, I sleep max 1.5 hrs per night then I throw off the covers only to put them back on again cos I'm cold.
When I'm out I suddenly sweat like a pig, take off my jacket and am then freezing, my head can be hot but my body is cold, my body can be hot my head is freezing. It drives me mad but I think if that's all there is to it what the hell. Running with hot flushes is weird but I get through it. You are much more capable that I am so you can do it too.
I'm currently trying black cohosh liquid form but you can buy it in liquid form. Other stuff my knowledgeable friend tells me about (she has kicked cancer through diet) is sage teabags and soya (in form of Tofu or soya) all are good for reducing hot flushes.
Like you I would give anything for a full nights sleep.
Don't despair mate you are one of my heroes.
I've just done another half marathons but in 35 mins longer that my best last year, I finished it and was really p'd off but 2 weeks later I'm determined to go back in and do it better next year with more training. Keep it up its worth it .Nidge.
All the best
Paul
User
A quick thought, and I may well be talking out of the back of my head (or somewhere) but I wonder whether those of you that suffer the hot flushes etc would benefit from HRT cake?
The recipe should be on the internet. It's full of seeds etc and I'm sure it helped me. I took no drugs during my hot flush time but relied on evening primrose, the HRT cake and things like that.
I found that I couldn't bear skin on skin contact (I usually sleep with one hand under my cheek) so I put a muslin square over the pillow so that my hand didn't touch my skin. It also gave me something close by to mop my face with.
It became such a habit that even now around ten years later, I still sleep on a muslin square and even take them on holiday.
A water bottle filled with chilled water kept close is helpful and portable. Hold it in your hands, up against your wrists where the blood flows.
I know that they now sell chillows (pillows that can be chilled) which might help
We can't control the winds - but we can adjust our sails |
User
Hi,
I usually carry round a small pocket battery operated fan which helps a lot if I need it.
If anyone asks, I say I'm having a hot flush which usually causes a laugh but when you explain it's because of cancer treatment, they understand.
Steve
User
Has anyone tried Depo Provera, as I have read it can be quite effective for hot flashes.
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/medroxyprogesterone
Roy
Edited by member 25 Sep 2015 at 10:05
| Reason: Not specified
User
Hi
If you haven't already done so have a look at the thread:
http://community.prostatecanceruk.org/posts/t10994-Use-of-cyproterone-acetate#post134238
Alan
User
Hi Nidge
Like Paul/Healey I have hot flushes all day and night in exactly the same way and, even before being diagnosed, have had to visit the loo for a pee at least 8-10 times each night and since starting HT and now RT with having a TURP procedure which has not decreased the need for going at all.. I just consider that it is "normal" now and although I am constantly tired muddle through the day and occasionally take a catnap whenever possible.
It is normal to feel down every so often (even if we are 100%fit) so my way of thinking is that I am glad to be alive and fighting this crappy disease than giving up and being accepting of it. I know you do not feel that way but I have to snap myself out of negative thoughts and switch to positive ones. My wife is a constant source of inspiration and is always encouraging me with positiveness.
Keep fighting Nidge and stay on top of it!!
Regards Chris/woody
Life seems different upside down, take another viewpoint.
User
cheers all a lot to look at and try I had a feeling you would all come along and offer me good things sometimes don't know what to do or where to turn, to use to being in control of my life thanks
nidge
run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it' |