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Learning how to face the future. Any advice?

User
Posted 30 Jun 2020 at 09:24

This is my first post. I have to admit to slightly obsessively reading other posts over the past few weeks, looking for hope and advice. 

I am 45, my husband is 54 and was diagnosed with pca in March. From the first blood test in Feb (psa 16 then three weeks later psa 28) each hospital appointment has hit us hard. There was no good news. After blood test he had MRI, CT and then SpectCT. This revealed advanced pca and metastasis in sternum. Gleason 10 in all cores.

We have two teenage kids, 16 and 19. Because of their own stresses with trying to study a levels and uni course at home because of Covid, we’ve told them most information but not that they can’t cure their dad.  We’re not sure how to do this. What if they ask how long? With his diagnosis I don’t want to lie to them but I don’t want them to carry the burden that we are now shouldering. 

My overwhelming feeling is that we’ve been cheated. We had just got to the point after 25 years together where we are financially stable, both in good jobs, kids almost grown up and we can spend time together enjoying life. 

I suppose there aren’t really many questions here but I think I will need the support of others going forward. 

 

User
Posted 01 Jul 2020 at 07:39

Sorry to read your news. I was 49 when diagnosed, given as little as two years. We decided to tell my kids it was incureable straight away. My kids were then 9, 14 and 16. It was a sad afternoon and lots of tears. My daughter did Dr Google which I think did not help but we got through the next month. 

They all were told at the same time, essential so they get the same story and no favouritism in their eyes, they also benefitted from hearing the answers to another’s questions.

it also made us all realise how precious time is together so we started doing more, getting less shouty at each other and more tolerant.

Here we are, 5.5 years on, my kids are fine, no regrets, making the most of any time together , somehow I am still going strong, running 1,000s of miles for PCUK and all loving life. It won’t last forever and it would have been so easy to drop 8nto the pit of despair on day 1 but what a waste of life that would have been.

we are all different, no one knows the path for your family right now but as I did you may want to reflect on this poem :- Beyond the Bend in the Road


Beyond the bend in the road
There may be a well, and there may be a castle,
And there may be just more road.
I don’t know and don’t ask.
As long as I’m on the road that’s before the bend
I look only at the road before the bend,
Because the road before the bend is all I can see.
It would do me no good to look anywhere else
Or at what I can’t see.
Let’s pay attention only to where we are.
There’s only enough beauty in being here and not somewhere else.
If there are people beyond the bend in the road,
Let them worry about what’s beyond the bend in the road.
That, for them, is the road.
If we’re to arrive there, when we arrive there we’ll know.
For now we know only that we’re not there.
Here there’s just the road before the bend, and before the bend
There’s the road without any bend.

 

 

 

 

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 02 Feb 2021 at 09:52

Hi ,my OH was diagnosed just over 5 yrs ago aged 55 with PSA 23 Gleason 4+5 spread to lymph nodes ,so incurable.
He had early chemo which he continued to work through,and has been on the stampede trial arm J which is the combination of ENZO and ABI for 4.5 years ,his PSA has been at 0.01 since about the third chemo session.
We realise that he is extremely lucky to be given the trial drugs .
Gary still works full time and most things are no different to before the diagnosis.
His strength has greatly reduced and also our love life has completely gone out the window . But we find these symptoms way outweigh the chance to have a near to normal lifestyle.
We’ve never asked or have been told of a prognosis which I think helps as we just carry on as normal.
Good luck for the future
Debby

Edited by member 02 Feb 2021 at 09:53  | Reason: Not specified

User
Posted 30 Jun 2020 at 10:54
We were also hit like a tonne of bricks at my Husbands diagnosis of stage 4 GL9 PC, nearly two years ago. My Husband was 62 at the time, so slightly older than your hubbie. Although we dont have children, we also feel cheated of our 'future'life

All I can say is after the initial shock things do get a little easier.

There are lots of new drugs coming out , especially in the last year or so. I think I find it even harder than my Husband to cope with, although we are trying to keep positive and carry on as 'normal' as possible.

I joined this forum (do not post very often) but gain knowledge so when we see our Oncologist I can be armed with questions,

People on here will also answer any of your questions as best they can, Lyn, Barry to name but a few.

I was very tearful and depressed for almost a year, but it was making me ill, so I have to focus on helping my husband , doing research on Vitamins, latest treatments etc.. makes me feel that I am doing something positive !

I wish you and your Husband all the best in this truly horrible journey that nobody wants to take !

Kim x

User
Posted 01 Jul 2020 at 00:38

Skye28, I'm really sorry.

Macmillan do some really helpful advice on this subject of telling children, although you already have excellent advice in this thread:

Talking to Children and Teenagers
(Unfortunately, Riprap, the teenager's forum which this refers to, appears to be defunct.)

There's a free Macmillan book available from most hospital cancer centres, and the PDF is available here:

Talking to Children and Teenagers when an Adult has Cancer

 

User
Posted 01 Jul 2020 at 16:21

Thank you for ( all) your kind words.

when I was diagnosed the urologist clearly had not looked at my scans before I walked in and he said “ Gleason 10 or 9 , let’s say 9” .

all cores were positive for pca 

I too had a growth near my sternum/ aorta and lymph involvement in my pelvis.

after chemo, radiotherapy , biclutamide and now over 4 years of abiraterone my last full body mri 3 months ago had no visible sign of the cancer in my sternum, the lymph had shrunk to “ normal “ size and my PSA remains at 0.13. I know I am one of the lucky ones. Sex disappeared during chemo never to be seen again but much as I enjoyed it I enjoy being alive more and my wife and I have ( I believe) come to terms with that. On diagnosis my onco was appalled at my plans to run 2 marathons on chemo. Now he says that exercise is a good thing as there is evidence that more exercise reduces the effects of cancer and makes you stronger to fight it ( clearly exercise within your abilities). 

Never give up. 

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 02 Feb 2021 at 08:41

My posts are probably on here somewhere. We had almost ten years of living with prostate cancer. Our lives changed a lot but my husband fought bravely, enduring many treatments and we enjoyed life as much as we could for as long as we could. We faced challenges and overcame many and he was still doing well until his chemo was stopped due to covid. In the end it was tough and he couldn't fight it any longer but we had nearly ten years of living that we thought we wouldn't haven There are more treatments now and the outlook for many is good.

I hope all goes well for you both and live life to the full when the lockdowns are over.

User
Posted 02 Feb 2021 at 09:32

Hi,

We are 18 months post diagnosis ( my husband is Gleason 9 and was given a prognosis of between 3/5 years). The first few months of coming to terms with the shock of this were horrendous and quickly followed by anger. Later you do develop a new normal particularly if the treatment keeps the cancer in check, which so far it has with my husband. Sometimes now we actually go periods when we don’t think about cancer at all. A year ago, I never thought this would be possible xxx

User
Posted 02 Feb 2021 at 11:33

Hi, 

Just to say there are lots of people on here who feel exactly the same as you do at the moment, and somehow you just carry on. Our situation is similar to Starcrossed and now we too can have days where its not the main thing in our lives. 

Technically my husband isn't in the 'younger man' category as he was diagnosed (incurable, G8, high PSA, you can read my profile) at 65. I'm quite a bit younger and I relate to your feelings of being robbed and I think "why us" a lot but try and stop myself as it doesnt help.

Wishing you all the best. 

Edited by member 02 Feb 2021 at 11:35  | Reason: Not specified

Mrs MAS

User
Posted 02 Feb 2021 at 12:51
I know it's really hard at first, your world is turned upside down by the diagnosis. I was just sailing along, taking my health for granted then BOOM stage 4 cancer, incurable, 2 years to live prognosis.

My wife reckons once I stopped feeling sorry for myself things became a lot easier.

User
Posted 30 Jun 2020 at 11:44
This all very difficult. Click my picture and read my profile. I am now 53 but had surgery at 48. From straight after the surgery I was deemed incurable and my wife and I have had to live with this 5 yrs now. Endless scans , appointments and constant worry of what is around the corner. I have a boy of 10 , so I know what you mean about feeling cheated. Financially great on a medical pension , you wouldn’t know I was I’ll , sex function back fully , part time job etc. If ONLY they’d got it out I’d be in a good place now rather than a daily semi-hell. Your hubbies diagnosis doesn’t sound good does it. I hope he responds well to treatment. My boy knows I have cancer and that I go for scans etc , but we only tell him as much as he needs to know until things get bad. I would do the same if I was you whilst all this is going on and their study ??

If life gives you lemons , then make lemonade

User
Posted 30 Jun 2020 at 13:22
What a bombshell and for such a young family! I would also suggest that you don't speculate with your children about the future outcome. As has been said, research into all aspects of PCa is ongoing and in many countries and new drugs developed to extend what are shortened lives of those so heavily affected by PCa. Sometimes, men are offered the chance of taking part in trials which may help such men live longer and or alleviate some of the adverse symptoms that the disease can cause further down the line. There are some treatments that are only available privately at considerable cost which may become an option to have within a trial on the NHS. So I think it worth researching what might become available. Some members have detailed some of the more recent treatments on this forum. These would include for example Lutetium 177. However, treatments often have side effects and some men feel that rather than risk adverse side effects reducing their quality of life, they would avoid risking these and just make the most of what they have for as for as long as possible. So that is one aspect a man and his partner have to consider.

It will become a little easier to come to terms with the diagnosis over time, although it's probably too soon to feel this way for some time. You can look to people on here to provide support and try to answer any questions you may want to ask.

Barry
User
Posted 30 Jun 2020 at 14:21

Hi, I am so sorry that you are having to go through this.  Our PC situation is very different to yours, so not much use to you from a knowledge/treatment perspective. 


With regard to your children. Sounds like you have been pretty honest with them.  They don’t need to know every single detail in depth. Though knowing enough also provides understanding of inevitable changes in their environment.


They may fill in the gaps from Dr Google but I think if you are open with them, as you have been, they are likely to ask you first.  Let them guide you when they want updates, or more information.  That way they have some control over their situation but like OldBarry says there are new treatments/trials, etc regularly, so speculation in itself may not be helpful but overall I think being open is.

Our two, 17 and 15 very rarely ask about it.  They pretty much know everything.  Even if we hadn’t told them. They would have overheard phone calls, etc & asked (or googled) by now anyway. It’s a very tough time for you all. xx

Mel

User
Posted 30 Jun 2020 at 23:50

Hi Lexi26,

In my experience, the consumption has lessened but not gone away completely. Knowing makes me feel less anxious.  I hope it will get less intense overtime for you too. 
My husband has surgery next wk, after initial delays due to Covid.  Next stage of anxiety to come now, after settling these past few weeks. 

Mel

User
Posted 01 Jul 2020 at 11:05
Kevin (Irun) is a living legend. He's inspired me to stop feeling sorry for myself and get off my backside and do something.

12 mile training walk yesterday Kev, no ill effects

User
Posted 01 Jul 2020 at 11:43

Originally Posted by: Online Community Member
Thank you all. Irun your advice re children is very helpful. I have read your profile and it gives me great hope that we will be as fortunate as you. My biggest worry was that oh has a G10 score but I see you are G9. I’ve been trying to find others with the same but it seems to be less common which adds to the worry. Husband has asked prognosis but they’re not keen to give any timescales which is a relief tbh.

 

Look at Devonmaid's profile - her husband was diagnosed with G10 and mets and lived for more than 10 years; until very close to the end, the only treatment he had was stilboestrol which is a less popular hormone therapy these days but certainly worked for her John. 

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

User
Posted 14 Jul 2020 at 15:52

This is really sad that it has not been discussed with you both.  It absolutely should be. There is a helpline from Prostate Cancer UK for exactly this, I saw it advertised yesterday.  Apologies, if you are already aware.

Mel

User
Posted 26 Jan 2021 at 07:35

Hello Skye28

I completely relate to the overwhelming feelings. I remember thinking I'm only 50 and that's it for us now, no more real intimacy /sex life at all. My husband used to have a high sex drive before and I used to joke with him what he would do if he ever became impotent.. Never in a million years thinking it would actually happen, and caused by something as hellish as this.

I sought help from my gp re the uncontrollable crying I was experiencing. We are now 4 months post diagnosis and I'm not sure if it's the medication that has improved my emotional state or the fact my husband has improved with treatment and we talk a lot about the loss of our sex life. We both desperately miss our old lives.! He's told me he would love to make love again but he simply can't because of the HT. HT was started immediately at diagnosis following a 2 week stay in hospital. He was so ill he thought he was dying and I was starting to believe the same! . It was such a traumatic time.  We were absolutely terrified and grief stricken in the begining.  He couldn't physically walk because of the cancer in his bones and was in agony.  I couldn't even hug him because it would hurt his chest. This was incredibly upsetting.

However, I can't describe the relief and joy in seeing him walk again, not in pain and not actually dying. We can hug again which is bloody wonderful! 

Intimacy now involves more hugs/kisses and I've introduced massages. It keeps us feeling close to each other, albeit in a different way now. 

We did speak to a psychologist at our local maggies centre and she commented that lots of couples don't say how they are feeling to each other because they want to protect their partners feelings and not cause them any more hurt. We are more conscious of maintaining honest with each other. It's definitely making us feel closer and provides some comfort. 

I really feel for you, and I get it. You are young too and how you thought your future was going to be is suddenly taken from you.

I hope this huge feeling of loss improves for you soon. It is a hellish journey that no one wants to be on. 

Wishing you continued  strength to manage the really hard days. X

User
Posted 26 Jan 2021 at 11:30
Loss of libido is harder for the partner, I think, because by its very nature it doesn’t actually bother the person it’s happening to. I found when I was on HT that although everything was still functioning, the desire for sex was simply absent, and that’s remained the case even though I’ve been off HT for almost a year now. I’m single, so it’s not a problem for me, but for couples it definitely is.

Best wishes,

Chris

User
Posted 01 Feb 2021 at 22:07

Hi Rachel, I see it is your first post. Sorry your here. As you have probably read many years are possible, not as many as would have been possible without the cancer though. So yes make the most of your life together, which is probably good advice even for people without cancer. 

Dave

User
Posted 01 Feb 2021 at 23:51

Hello rrworkshop

So sorry you ate also on this journey. See my bio. 

First few months have been very difficult to adjust to this new life, but we are greatful for the treatments available and remain hopeful about what the researchers will come up with in the not too distant future.

Take care. 

Show Most Thanked Posts
User
Posted 30 Jun 2020 at 10:54
We were also hit like a tonne of bricks at my Husbands diagnosis of stage 4 GL9 PC, nearly two years ago. My Husband was 62 at the time, so slightly older than your hubbie. Although we dont have children, we also feel cheated of our 'future'life

All I can say is after the initial shock things do get a little easier.

There are lots of new drugs coming out , especially in the last year or so. I think I find it even harder than my Husband to cope with, although we are trying to keep positive and carry on as 'normal' as possible.

I joined this forum (do not post very often) but gain knowledge so when we see our Oncologist I can be armed with questions,

People on here will also answer any of your questions as best they can, Lyn, Barry to name but a few.

I was very tearful and depressed for almost a year, but it was making me ill, so I have to focus on helping my husband , doing research on Vitamins, latest treatments etc.. makes me feel that I am doing something positive !

I wish you and your Husband all the best in this truly horrible journey that nobody wants to take !

Kim x

User
Posted 30 Jun 2020 at 11:44
This all very difficult. Click my picture and read my profile. I am now 53 but had surgery at 48. From straight after the surgery I was deemed incurable and my wife and I have had to live with this 5 yrs now. Endless scans , appointments and constant worry of what is around the corner. I have a boy of 10 , so I know what you mean about feeling cheated. Financially great on a medical pension , you wouldn’t know I was I’ll , sex function back fully , part time job etc. If ONLY they’d got it out I’d be in a good place now rather than a daily semi-hell. Your hubbies diagnosis doesn’t sound good does it. I hope he responds well to treatment. My boy knows I have cancer and that I go for scans etc , but we only tell him as much as he needs to know until things get bad. I would do the same if I was you whilst all this is going on and their study ??

If life gives you lemons , then make lemonade

User
Posted 30 Jun 2020 at 12:15
Thanks for your replies. Chris J I have read your profile - I’ll be honest the whippet is what I saw first - we have two!

My husband is fit and well and was when diagnosed which makes it all the more difficult. (Only symptom was urination problem). It almost seems like it’s not real. Chemo going well so far. Early days but sexual function ok albeit libido has crashed through the floor.

Your advice on what to tell the children is what I have thought thus far. However, ours being older than your boy I’m concerned that they might hear from someone else that it’s incurable. We’ve also told them it’s on his sternum so a quick google will probably tell them what they don’t want to know.

User
Posted 30 Jun 2020 at 13:22
What a bombshell and for such a young family! I would also suggest that you don't speculate with your children about the future outcome. As has been said, research into all aspects of PCa is ongoing and in many countries and new drugs developed to extend what are shortened lives of those so heavily affected by PCa. Sometimes, men are offered the chance of taking part in trials which may help such men live longer and or alleviate some of the adverse symptoms that the disease can cause further down the line. There are some treatments that are only available privately at considerable cost which may become an option to have within a trial on the NHS. So I think it worth researching what might become available. Some members have detailed some of the more recent treatments on this forum. These would include for example Lutetium 177. However, treatments often have side effects and some men feel that rather than risk adverse side effects reducing their quality of life, they would avoid risking these and just make the most of what they have for as for as long as possible. So that is one aspect a man and his partner have to consider.

It will become a little easier to come to terms with the diagnosis over time, although it's probably too soon to feel this way for some time. You can look to people on here to provide support and try to answer any questions you may want to ask.

Barry
User
Posted 30 Jun 2020 at 14:21

Hi, I am so sorry that you are having to go through this.  Our PC situation is very different to yours, so not much use to you from a knowledge/treatment perspective. 


With regard to your children. Sounds like you have been pretty honest with them.  They don’t need to know every single detail in depth. Though knowing enough also provides understanding of inevitable changes in their environment.


They may fill in the gaps from Dr Google but I think if you are open with them, as you have been, they are likely to ask you first.  Let them guide you when they want updates, or more information.  That way they have some control over their situation but like OldBarry says there are new treatments/trials, etc regularly, so speculation in itself may not be helpful but overall I think being open is.

Our two, 17 and 15 very rarely ask about it.  They pretty much know everything.  Even if we hadn’t told them. They would have overheard phone calls, etc & asked (or googled) by now anyway. It’s a very tough time for you all. xx

Mel

User
Posted 30 Jun 2020 at 21:53

Skye, I cant offer any practical advice as I’m pretty new to this experience, but I just wanted to comment to let you know that I have read your post and feel you and your family.

My husband turned 60 in the midst of investigations and start of CV19 so he experienced some delays. He is a G8, T2b and now awaits surgery. I am consumed with everything to do with prostate cancer (I do hope this goes away). He’s as fit as a fiddle so it came as shock.

The hardest job of our lives was telling our grown up kids. Take care.

User
Posted 30 Jun 2020 at 23:50

Hi Lexi26,

In my experience, the consumption has lessened but not gone away completely. Knowing makes me feel less anxious.  I hope it will get less intense overtime for you too. 
My husband has surgery next wk, after initial delays due to Covid.  Next stage of anxiety to come now, after settling these past few weeks. 

Mel

User
Posted 01 Jul 2020 at 00:38

Skye28, I'm really sorry.

Macmillan do some really helpful advice on this subject of telling children, although you already have excellent advice in this thread:

Talking to Children and Teenagers
(Unfortunately, Riprap, the teenager's forum which this refers to, appears to be defunct.)

There's a free Macmillan book available from most hospital cancer centres, and the PDF is available here:

Talking to Children and Teenagers when an Adult has Cancer

 

User
Posted 01 Jul 2020 at 07:39

Sorry to read your news. I was 49 when diagnosed, given as little as two years. We decided to tell my kids it was incureable straight away. My kids were then 9, 14 and 16. It was a sad afternoon and lots of tears. My daughter did Dr Google which I think did not help but we got through the next month. 

They all were told at the same time, essential so they get the same story and no favouritism in their eyes, they also benefitted from hearing the answers to another’s questions.

it also made us all realise how precious time is together so we started doing more, getting less shouty at each other and more tolerant.

Here we are, 5.5 years on, my kids are fine, no regrets, making the most of any time together , somehow I am still going strong, running 1,000s of miles for PCUK and all loving life. It won’t last forever and it would have been so easy to drop 8nto the pit of despair on day 1 but what a waste of life that would have been.

we are all different, no one knows the path for your family right now but as I did you may want to reflect on this poem :- Beyond the Bend in the Road


Beyond the bend in the road
There may be a well, and there may be a castle,
And there may be just more road.
I don’t know and don’t ask.
As long as I’m on the road that’s before the bend
I look only at the road before the bend,
Because the road before the bend is all I can see.
It would do me no good to look anywhere else
Or at what I can’t see.
Let’s pay attention only to where we are.
There’s only enough beauty in being here and not somewhere else.
If there are people beyond the bend in the road,
Let them worry about what’s beyond the bend in the road.
That, for them, is the road.
If we’re to arrive there, when we arrive there we’ll know.
For now we know only that we’re not there.
Here there’s just the road before the bend, and before the bend
There’s the road without any bend.

 

 

 

 

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 01 Jul 2020 at 09:54
Thank you all. Irun your advice re children is very helpful. I have read your profile and it gives me great hope that we will be as fortunate as you. My biggest worry was that oh has a G10 score but I see you are G9. I’ve been trying to find others with the same but it seems to be less common which adds to the worry. Husband has asked prognosis but they’re not keen to give any timescales which is a relief tbh.

User
Posted 01 Jul 2020 at 09:54

irun, It’s fantastic that you have had so much more time than expected and are able to share such positivity & joy.  The poem is lovely!  Thanks for sharing. 

Mel

User
Posted 01 Jul 2020 at 11:05
Kevin (Irun) is a living legend. He's inspired me to stop feeling sorry for myself and get off my backside and do something.

12 mile training walk yesterday Kev, no ill effects

User
Posted 01 Jul 2020 at 11:43

Originally Posted by: Online Community Member
Thank you all. Irun your advice re children is very helpful. I have read your profile and it gives me great hope that we will be as fortunate as you. My biggest worry was that oh has a G10 score but I see you are G9. I’ve been trying to find others with the same but it seems to be less common which adds to the worry. Husband has asked prognosis but they’re not keen to give any timescales which is a relief tbh.

 

Look at Devonmaid's profile - her husband was diagnosed with G10 and mets and lived for more than 10 years; until very close to the end, the only treatment he had was stilboestrol which is a less popular hormone therapy these days but certainly worked for her John. 

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

User
Posted 01 Jul 2020 at 16:21

Thank you for ( all) your kind words.

when I was diagnosed the urologist clearly had not looked at my scans before I walked in and he said “ Gleason 10 or 9 , let’s say 9” .

all cores were positive for pca 

I too had a growth near my sternum/ aorta and lymph involvement in my pelvis.

after chemo, radiotherapy , biclutamide and now over 4 years of abiraterone my last full body mri 3 months ago had no visible sign of the cancer in my sternum, the lymph had shrunk to “ normal “ size and my PSA remains at 0.13. I know I am one of the lucky ones. Sex disappeared during chemo never to be seen again but much as I enjoyed it I enjoy being alive more and my wife and I have ( I believe) come to terms with that. On diagnosis my onco was appalled at my plans to run 2 marathons on chemo. Now he says that exercise is a good thing as there is evidence that more exercise reduces the effects of cancer and makes you stronger to fight it ( clearly exercise within your abilities). 

Never give up. 

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 14 Jul 2020 at 08:31

Hi, I completely understand what you must be going through. My husband was diagnosed last September with pca, Gleason 9. My children are in their 20s but over the course of a few month I began to have individual conversations with them. If they asked me how long their dad had to live, I told them what we had been told. My view was that they could easily have looked the information up online and I would rather be open with them. Initially it was a difficult decision because you want to spare them from the horrors of the prognosis. It feels better this way now as we are all on this journey together. I appreciate however, that my children are 10 years older than yours and you might want to take it slowly and see how conversations evolve. Please let us know how you get on. This forum is a great support. 

User
Posted 14 Jul 2020 at 09:11
Thanks again all. My husband has started chemotherapy but spent last last weekend- our son‘s birthday - in hospital as he had an infection and neutrophil level was 0.1. I believe that is very low? Very difficult for him. We’re hoping the 2nd chemo session won’t be the same.

For me I wonder how have others have coped with the loss of their intimate relationship? I am finding that very hard.

User
Posted 14 Jul 2020 at 14:02
I think one of the almost guaranteed side-effects of castration level injectable HT is very swift loss of libido. Sexual function is there but I guess the man just simply isn’t interested or even thinks about it. I guess we are all different but in my case and many others , the loss of sexual function was tragic and all-consuming. I was only 48 at surgery. I’m 53 now and have been sexually active the last 2 1/2 yrs which has been very lucky. However my cancer is very much growing still and I should be on HT. My Onco at the moment is fine with me making my own choice. I just cannot get my head around accepting castration. I know death is the other option but incurable is incurable after all. Who knows the best path ?

Hope the treatment goes better. I guess I didn’t answer your question. The loss is on both sides with this awful disease. I guess you either enjoy your own company more or become much more forward in the sex life to try to make him want it. However during chemo it’s understandable he’s just ill.

When I had surgery my neutrophils fell through the floor and I was on a private room for 14 days

If life gives you lemons , then make lemonade

User
Posted 14 Jul 2020 at 14:09
I believe it is much more difficult for the women to deal with. As soon as I started on HT going on 2 years ago my libido disappeared out the window and I don't even think about sex at all.

My friends who still have sex lives find this difficult, even impossible to comprehend.

It's difficult to imagine after a long and fulfilling sex life though from a personal perspective at the onset I would have appreciated more discussion with the medics about our sex life falling off a cliff and the emotional impact particularly on my wife who is blameless in all this, she never signed up for HT.

I suppose the new normal of no sex please we're British has to be weighed against the Prostap prescription which is effectively extending my life.

I got a 2 year prognosis in August 2018, I'd rather have no sex and be alive than the alternative.

User
Posted 14 Jul 2020 at 14:42
I guess it’s also very important to look at age when diagnosed etc. I know many over 60’s have terrific sex lives still , and even over 70’s. But it’s easier to feel cheated when you are younger than 50 at diagnosis , and are told you may not reach 55 !

If life gives you lemons , then make lemonade

User
Posted 14 Jul 2020 at 15:24

I too have found the change in our relationship difficult, namely because it has never been discussed with us by any professional and my husband never mentions it! So I never mention it either though I feel a sense of loss and grief

User
Posted 14 Jul 2020 at 15:52

This is really sad that it has not been discussed with you both.  It absolutely should be. There is a helpline from Prostate Cancer UK for exactly this, I saw it advertised yesterday.  Apologies, if you are already aware.

Mel

User
Posted 16 Jul 2020 at 10:17
JasperM yes the choice we’ve made is longer life although I can completely understand ChrisJ’s point of view and choices about QoL. My upset is not solely loss of sex but everything that comes with that. That’s why I used the word intimacy. It’s the looks, the handholding the snatched moments when the kids are out. I haven’t discussed this with my oh as I think it would upset him too much if he knew how I felt. It also sounds very selfish on my part because he’s the one dealing with the health matters.

MK1977 we haven’t had any discussions with professionals but as above I think oh has enough to deal with atm. I’ll keep the helpline in mind.

User
Posted 19 Jan 2021 at 06:53

Hello Skye28

I am 50. My husband is 54 and diagnosed Oct 2020 with Advanced Prostate Cancer. Grade 5 tumour which I think is Gleason 10. T3b N0 M1b. Psa level  739. Widespread bone metastisis. Extremely fit and active man who would spend a lot of his spare time road cycling. He had no early symptoms, had some groin soreness quickly followed by lower back, pelvic and thigh pains. It was an incredibly swift decline from cycling 30 miles every other day to agonising pain and needing crutches to walk over a 6 week period. Then this devastating diagnosis on October. No family history. We have been married nearly 30 years and have 2 sons in their 20s.  The emotional and physical impact has been immense.

My husband's philosophy was.. "Look after your body, and it will look after you". Yes, we both feel very cheated too as we had got to a point in our lives where sons grown up and feeling we could shift down a gear. We have not been able to have sex since the treatment started in October (abiraterone and monthly degralix injections) and trying to get the pain management under control. We both desperately miss our sexual relationship. It's a massive adjustment but getting used to this. It's early days but we are relieved he has responded to treatment, psa down to 0.12!, he can now walk again and oncologist says he should be able to take up jogging or cycling again. Glad we joined the group as there is so much info that brings a lot of hope to men and their families living with prostate cancer. Hope things are feeling a bit easier. 

Edited by member 19 Jan 2021 at 06:54  | Reason: Error in age

User
Posted 22 Jan 2021 at 20:35
Hello Everyone,

On Monday 16 Jan my husband told me he had advanced metastatic cancer with a PSA of 136.

It is devastating. He is only 56. Fit and active, no family history, no real sign bar some peeing problems. We have two grown up sons age 18 and 23. Youngest has just started university.

Words cannot say how shocking this all is. We are both still working but I work part time at home so that helps. After 35 years in the cut throat corporate world I thought I had it sorted. No mortgage, sons sorted, took early release from previous company. Wasn’t I smug....

Over the last few days I have even taken to thinking whether I should stay in our house, and looking at Mr Google widows are just grey haired old ladies who look like my Mum. I have written him off already and just cannot control my thoughts.

He is being so brave. No tears but something will just set me off time and time again.

Is any of this normal?

User
Posted 22 Jan 2021 at 21:08

Originally Posted by: Online Community Member
Hello Everyone,

On Monday 16 Jan my husband told me he had advanced metastatic cancer with a PSA of 136.

It is devastating. He is only 56. Fit and active, no family history, no real sign bar some peeing problems. We have two grown up sons age 18 and 23. Youngest has just started university.

Words cannot say how shocking this all is. We are both still working but I work part time at home so that helps. After 35 years in the cut throat corporate world I thought I had it sorted. No mortgage, sons sorted, took early release from previous company. Wasn’t I smug....

Over the last few days I have even taken to thinking whether I should stay in our house, and looking at Mr Google widows are just grey haired old ladies who look like my Mum. I have written him off already and just cannot control my thoughts.

He is being so brave. No tears but something will just set me off time and time again.

Is any of this normal?

hello

sorry to hear your sad news. I am no expert but don’t despair as there are many treatments and many men live with this cancer... there are ever changing new treatments and it seems you are not even slightly at the end of the road.

I would advise you attend (in person if you are lucky or due to Covid standard video or phone link) your husbands meeting with his oncologist , gather all the facts, the treatments etc... 

 

best 

a

x

User
Posted 25 Jan 2021 at 17:38

I’ve been thinking about how to reply to your post Highlandlass. I understand the frustration with seemingly doing everything right - my husband is a slim, fit, healthy eating, positive person, yet he has developed this awful disease. 

 

It’s coming up to a year since his diagnoses. Seems like an age ago now. He has responded well to treatment but radiotherapy on top of chemotherapy has left him with some symptoms. We’re hoping these will improve.

 

Loss of intimacy has hugely effected our relationship. He has had no sexual function since July and HT and treatments have changed the way he interacts with me. As a result we don’t have the closeness we used have. 

 

Strangely my oh seems to be on the level emotionally and is carrying on virtually as normal. I guess I’m happy about that. I’m not sure if that’s because he’s come to terms with his diagnosis or the opposite. 

 

I want to try sound positive I really do but I’m afraid that’s just not how I feel. Some days it’s all I can do to stop crying. The loss I feel is overwhelming. 

 

User
Posted 26 Jan 2021 at 07:35

Hello Skye28

I completely relate to the overwhelming feelings. I remember thinking I'm only 50 and that's it for us now, no more real intimacy /sex life at all. My husband used to have a high sex drive before and I used to joke with him what he would do if he ever became impotent.. Never in a million years thinking it would actually happen, and caused by something as hellish as this.

I sought help from my gp re the uncontrollable crying I was experiencing. We are now 4 months post diagnosis and I'm not sure if it's the medication that has improved my emotional state or the fact my husband has improved with treatment and we talk a lot about the loss of our sex life. We both desperately miss our old lives.! He's told me he would love to make love again but he simply can't because of the HT. HT was started immediately at diagnosis following a 2 week stay in hospital. He was so ill he thought he was dying and I was starting to believe the same! . It was such a traumatic time.  We were absolutely terrified and grief stricken in the begining.  He couldn't physically walk because of the cancer in his bones and was in agony.  I couldn't even hug him because it would hurt his chest. This was incredibly upsetting.

However, I can't describe the relief and joy in seeing him walk again, not in pain and not actually dying. We can hug again which is bloody wonderful! 

Intimacy now involves more hugs/kisses and I've introduced massages. It keeps us feeling close to each other, albeit in a different way now. 

We did speak to a psychologist at our local maggies centre and she commented that lots of couples don't say how they are feeling to each other because they want to protect their partners feelings and not cause them any more hurt. We are more conscious of maintaining honest with each other. It's definitely making us feel closer and provides some comfort. 

I really feel for you, and I get it. You are young too and how you thought your future was going to be is suddenly taken from you.

I hope this huge feeling of loss improves for you soon. It is a hellish journey that no one wants to be on. 

Wishing you continued  strength to manage the really hard days. X

User
Posted 26 Jan 2021 at 11:30
Loss of libido is harder for the partner, I think, because by its very nature it doesn’t actually bother the person it’s happening to. I found when I was on HT that although everything was still functioning, the desire for sex was simply absent, and that’s remained the case even though I’ve been off HT for almost a year now. I’m single, so it’s not a problem for me, but for couples it definitely is.

Best wishes,

Chris

User
Posted 26 Jan 2021 at 17:52
Highland. we have had our diagnosis for just 1 week Stage 4. In the bone and lymph nodes. Husband looks washed out but dont we all. This b****** CV19 is doing us all in!

I feel sick every day. I am working from home so that helps and is distracts me but I just want to scream out - Why me, why us? We had so many plans and holidays to go on.

User
Posted 26 Jan 2021 at 19:42

Don't be too hard on yourself Corrie, was it John Lennon who said life is what happens while you're busy making other plans.

Illness and disease are all part of life unfortunately.

User
Posted 26 Jan 2021 at 23:47
Any hope of an exciting sex life ended for me when I was 45 - but here we are 11 years later living the best lives we can. I am quite sure that anyone who gets any kind of cancer wonders why them, as do the parents whose children get cancer or the families who have lost someone too early for any reason at all. I was reading today of the 25 year old teacher who has died of Covid. It is what it is - Cancer Research UK says that 1 in 2 people born after 1960 will be diagnosed with some form of cancer in their lifetime. The early shock of diagnosis tends to settle down and you will find your new normal; as the oncologist said, the next few years may be quite uneventful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Feb 2021 at 21:31

It's definitely given me some hope reading these posts, just knowing there are others out there feeling the same way.

My partner is 56, I'm 52. After 7 years together, we finally moved in last year with our blended families. He only went to the doctor because he was having trouble peeing. PSA level came back at 177, biopsy and scans revealed it had spread to distant lymph glands right up to his chest, Gleason score of 9.

We couldn't stop crying for the first few days, especially before we had the full diagnosis- it was worse not knowing. It's now nearly a month since diagnosis and we are trying to make the best of the time we have and hope that new treatments will come along in the next couple of years. he's running and working out - probably fitter than he's been in a while a mostly keeps his spirits up. He was advised not to go for chemo at the moment because of Covid so is on hormone treatment and Enzalutamide. Side effects so far are just a few hot flushes and a bit of tiredness which he is trying to combat by keeping fit. I try not to think too much about the future because it's just too awful to think about. At times I feel angry that we've been robbed of our future, having been together such a relatively short time, but there seems little point in getting dragged down by that, when we should be trying to just enjoy now. His PSA level has already gone down to 46 and we are hoping for a better result at next blood test. He amazes me every day with his positivity and determination.

User
Posted 01 Feb 2021 at 22:07

Hi Rachel, I see it is your first post. Sorry your here. As you have probably read many years are possible, not as many as would have been possible without the cancer though. So yes make the most of your life together, which is probably good advice even for people without cancer. 

Dave

User
Posted 01 Feb 2021 at 23:51

Hello rrworkshop

So sorry you ate also on this journey. See my bio. 

First few months have been very difficult to adjust to this new life, but we are greatful for the treatments available and remain hopeful about what the researchers will come up with in the not too distant future.

Take care. 

User
Posted 02 Feb 2021 at 08:41

My posts are probably on here somewhere. We had almost ten years of living with prostate cancer. Our lives changed a lot but my husband fought bravely, enduring many treatments and we enjoyed life as much as we could for as long as we could. We faced challenges and overcame many and he was still doing well until his chemo was stopped due to covid. In the end it was tough and he couldn't fight it any longer but we had nearly ten years of living that we thought we wouldn't haven There are more treatments now and the outlook for many is good.

I hope all goes well for you both and live life to the full when the lockdowns are over.

User
Posted 02 Feb 2021 at 09:32

Hi,

We are 18 months post diagnosis ( my husband is Gleason 9 and was given a prognosis of between 3/5 years). The first few months of coming to terms with the shock of this were horrendous and quickly followed by anger. Later you do develop a new normal particularly if the treatment keeps the cancer in check, which so far it has with my husband. Sometimes now we actually go periods when we don’t think about cancer at all. A year ago, I never thought this would be possible xxx

User
Posted 02 Feb 2021 at 09:52

Hi ,my OH was diagnosed just over 5 yrs ago aged 55 with PSA 23 Gleason 4+5 spread to lymph nodes ,so incurable.
He had early chemo which he continued to work through,and has been on the stampede trial arm J which is the combination of ENZO and ABI for 4.5 years ,his PSA has been at 0.01 since about the third chemo session.
We realise that he is extremely lucky to be given the trial drugs .
Gary still works full time and most things are no different to before the diagnosis.
His strength has greatly reduced and also our love life has completely gone out the window . But we find these symptoms way outweigh the chance to have a near to normal lifestyle.
We’ve never asked or have been told of a prognosis which I think helps as we just carry on as normal.
Good luck for the future
Debby

Edited by member 02 Feb 2021 at 09:53  | Reason: Not specified

User
Posted 02 Feb 2021 at 11:33

Hi, 

Just to say there are lots of people on here who feel exactly the same as you do at the moment, and somehow you just carry on. Our situation is similar to Starcrossed and now we too can have days where its not the main thing in our lives. 

Technically my husband isn't in the 'younger man' category as he was diagnosed (incurable, G8, high PSA, you can read my profile) at 65. I'm quite a bit younger and I relate to your feelings of being robbed and I think "why us" a lot but try and stop myself as it doesnt help.

Wishing you all the best. 

Edited by member 02 Feb 2021 at 11:35  | Reason: Not specified

Mrs MAS

User
Posted 02 Feb 2021 at 12:51
I know it's really hard at first, your world is turned upside down by the diagnosis. I was just sailing along, taking my health for granted then BOOM stage 4 cancer, incurable, 2 years to live prognosis.

My wife reckons once I stopped feeling sorry for myself things became a lot easier.

User
Posted 02 Feb 2021 at 13:35

You are still here though. Jasper. X

Mrs MAS

User
Posted 13 Mar 2021 at 07:42

Oh Corrie I feel for you. We only found out in February and I feel so tearful all the time as well. I have three children who are all grown up and we all walk around pretending it’s fine when it clearly isn’t. I’ve understood two important things from reading a lot on this site. The first one is it is very early days for you and I and it’s not knowing what’s coming that is so debilitating and the second one is hope. Don’t give up we are at the beginning we can get through it. X

 
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