Hi to everyone. Firstly I do not normally do forums or online chatting but reading through some of the posts and some of the stories I admire peoples strength and bravery. Some make me feel that I have it quite easy.
I'm 48 and was diagnosed with prostate cancer in January 2021 with a psa of 2976. I also had cancer in two places in my spine and was told another month and i probabably would have lost the use of my legs as my spinal cord was being pressed upon on mr MRI.
I had strong radiotherapy straight away and went on to steroids, enzalutimide and degrelix. 23months later my psa is stable around 6. I have the normal back pain,fatigue that comes with the treatment and the degrelix hits mee quite hard every month.
I'm a typical bloke and just get on with it I still work in construction industry.
My question and experience is since I was diagnosed I thought my family of 3 young daughters and wife of 18years would become closer but in fact it has driven us further apart. I get no support. I'm never asked how I am, how I'm feeling. I've always supported my family but this has really damaged my family. My wife really does dismiss it and even negatively comments about it. Has anyone else experienced this as I have no idea what I've done I never wanted this and would wish it on no one.
Hi
Sorry to hear about your situation.
My feeling is that with cancer people are either too scared to talk about it or embarrassed or both.
When u say your wife passes negative comments what does she say, obviously don't reply to this if you'd rather not.
Just for info I don't have kids but my partner never said very much at all but she was obviously worried.
I told very few people about the cancer, just tried to carry on as normal.
Best wishes
Steve
Hi, I was diagnosed same month and year as you, but I was in early 70 retired, grown up kids and teen grandkids, wife very supportive comes to all meatings with me, kid's ignore it with a you can cope with it attitude, one daughter comes to see us every week and never asks how im doing. Due to work none of them live close to us.
It's like Grundo say's some people accept it some are scared and some just bury their heads in the sand everyone different.
If your cancer is like mine you can't get rid of it, it's part of your life accept it make it part of normal life like it's no big thing, don't let it ruin your life, just let your family get used to it slowly.
All ways someone to talk to on here, all the best Ulls
good words from Ulls,
The other thing is PC can be quite difficult to explain to other people including family members ie different tests , different treatments, some just can't take it all in or don't particularly want to. My OH never really understood the intricacies of it all. But that was OK, sometimes just didn't want to dwell on it, just get on with life
Steve
Hi,
I am really sorry to read your experience. My wife has been very supportive too much so in some ways.
This is hard to say so please forgive me. However, judging by your comments either she has no comprehension of the issues with PC or there is another undermining issue.
If you can I would seek some couples counseling, were you can work this out. Otherwise, this we eat away at your relationship.
Good luck
Upside
Hi Phil
my husband and I were the other way round! He was diagnosed in September and I needed to talk, get information, be there at appointments asking questions etc. he didn’t want to talk, did not say anything at appointments and didn’t really seem to be engaging with it at all! I felt like he was shutting me out and shutting me down! I also shed bucketfuls of tears. It was like I was grieving. I was angry too! So perhaps my husband was trying to deal with my response?
we have 4 children in their 40s. When we have hospital appointments I send them a ‘Dad update’ so they have no choice but to know what’s going on. I have noticed that they tend to ask him a tad more how he is but I have never heard them refer explicitly to the prostate cancer. This is not bothering me and if it is bothering my husband, he has not said!
I think, with children, they just assume we will go on for ever! Also, they are so very busy in their own family and work lives that they just don’t have time to be thinking about us every minute of every day. That said, I know that if we were not managing in any way we could call on them. The other thing to remember is that ,as you have been diagnosed with prostate cancer at a relatively young age, they are at greater risk, too, and they might be worrying about themselves. Due to high family incidence of prostate and breast cancer, my husband has been referred for genetic counselling. We have urged our sons and daughters to get themselves checked. 3 have - 1 has not! We all act differently!
as for your wife - she is perhaps like my husband - frightened, grieving, unable to express herself in words etc as others have suggested? I have consistently said throughout all of this that prostate cancer affects wives/ partners too and they need as much, if not more, support than the patient!
we are slowly getting used to our altered life - it’s taking time to adjust. You will get there!
Best of luck
Hi
Sorry about your differences, this disease can affect everyone in different ways, some hide their head in the sand, others are frightened about the future and what it holds for the family.
Your wife, was possible terrified at the thought of you, first not being able to walk, then not being able to work. I’m no doctor but have you all sat down and talked brought out everyone’s concerns ? Better out in the open rather than let it go on. If need be you could ask a McMillan nurse to visit and they have a wealth of experience in these matters.
Take care
Joe
Hi,
You must be feeling devastated and also so young to be in this position. My husband is 77 and the physical side our our marriage had died some while ago, so no loss there. However, your wife may be grieving that side of your relationship.
Whilst I cannot speak for her, it may be that she is angry with you for not noticing signs. My initial reaction with my husband, who's psa was over 1200, was why the hell didn't he say anything earlier. His cancer has metastasised due to the delay in seeking help. I was upset but also angry. If he had a cold or any aches and pains, he made sure I knew about it. However, the symptoms associated with prostate cancer were there, but he never mentioned it.
I have been asking for years about him having regular psa tests and he told me they do it with the annual check. This is not true. I had asked him to check if they were part of his normal MOT, but he didn't bother and if we had known they weren't, I would have told him to ask for it. I have always worried about this type of cancer and would regularly ask him how many times he had to get up to pee etc., so the fact that it had got to grade four before he even bothered to do anything about it, makes me mad.
So your wife's reaction may be anger or perhaps the upset knowing that you will be struggling to continue with the physical side of your relationship. It may be, as has been suggested, you seek couples counselling or just sit your wife down and ask her what she truly feels.
Please keep in touch on this site as there are some terrific guys here, and partners, who are willing to listen and, when they can, offer some advice.
Best regards
Gina
Gosh Tina, you are so right about all the other things which are now out of the question. My husband has many health issues, including heart problems so insurance for a trip abroad would be astronomical. We do have it hard and our lives have certainly changed.
When I try and make any plans, there is always the chance that they will have to be cancelled or postponed due to him having a "bad turn", or a fall etc.
He totally relies on me and cannot seem to do anything on his own. Tbh, it is like having another child. Both my parents had dementia in their latter years and I feel I have just got over caring for both of them and finally my mum, till she died four years ago. However, the last two years I seem to be nurse, carer, organiser, shit shoveller (he has microscopic colitis too), cleaner, and cook etc. I do all the "blue jobs" as he is not always strong enough to do the bins, or collect the logs and other heavy jobs. He just about manages loading and unloading the dishwasher.
His memory is almost non existent and can never remember what meds he has to take if they are not in the dosset box. I have to take him to all his appointments as he either cannot understand what they say if they are not English but even if they were, he would never remember what was said. I have said this before jokingly, but I sometimes feel like telling him to go and play with the toys in the corner while the doc and I discuss his health.
He is only 77 but this was a man who ran his own successful publishing business for many years. This cancer, plus the hormone treatment has taken away the man who I relied on, looked up to and respected. The worst thing of all is the depression and mood swings. I never know from one day to another whether I will get the grumpy one or the sad one, and sometimes the happy one as he has been at the gin again during the day. Need I say more!!
Regards
Gina
Aww bless you , my partner just turned 60 I'm 47 he's OK mentally and memory is working as before but physically worse now , I was asked to go away for a few days with my friend he wanted me to go, tbh he just got out of hospital and I couldn't leave him ,I'm hoping to go away on mybown as I need a break but to scared to leave him now
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