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Learning how to face the future. Any advice?

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User

Posted 14 Jul 2020 at 14:24

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 14:52

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 09:17

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

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.

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