Dealing with my husband’s advanced prostate cancer and not being able to tell anyone.

Hi Jane

I was sorry to hear about all your challenges. Would you mind if I was really blunt to help you?

I was diagnosed in July 2021 and after Enzalutamide and 10 cycles of Docetaxel the hard reality is I'm not really improving and have bad spells and good spells.

This is where I've found friends really helpful. After more than a year my symptoms are now visible to them which is why you need their support through the good times and bad times. They will also help to create all those important memories.

I went to the other extreme and told everyone but it is a comfort to know everyone is rooting for me and providing support. 

So I would suggest you try to persuade your husband to tell your or his closest friends. Believe me, it will be invaluable and also help to provide support and encouragement to you, whilst we all look forward to potential better treatments. 

Best   

Jane,

Sharing in this forum really helps when you want to share with friends and family.  I totally agree with Sussex20.  I started off not telling anyone but once I started I couldn't stop.  Not everyone mind.

I used to hate when strangers asked how was I (just a normal everyday thing).  I would normally just say "I'm OK".  I ended up only sharing with people I wanted to know.

I didn't want pity from anyone.  We men don't normally see things from the woman's point of view.  Being in this forum I have learned a lot from the wives on how this affects them.

Encourage your husband to read through how some of the wives are coping.

My father died from PC at the age of 53. I was 71 when diagnosed and told everyone I knew early on as I had no idea what my prognosis would be. I found that there were two types of friends, those who couldn't hear the "C" word and those who were really helpful. After I finished RT in 2019 I was totally wiped out and it was the "real" friends who got me back on my feet. They came round and got me out of the house. At the start we would walk for just a few minutes but gradually built it up. Now, four years down the road and at the age of 75, I am walking 30 to 50 miles every month, swimming a mile twice a week and rowing as often as the wind and tides allow. In January I did a sponsored walk for Prostate Cancer UK and managed over 80 miles and I have to thank those real friends who got me going four years ago.

Seamus, that is so true.

Seamus47 said:

I found that there were two types of friends, those who couldn't hear the "C" word and those who were really helpful.

Just been going through "this day last year" in my diary.  I had written down, "Just heard the most apt lyrics for Cancer sufferers "The Road is Long, with many a winding turn, that leads us to who knows where" (He ain't heavy, he's my brother - The Hollies.

Agreed. And raising money for Prostrate Cancer UK is also a wonderful positive thing to do. Friends will help with this. 

Also don't forget by telling other people you may be helping to save lives by encouraging earlier diagnosis.    

... and one of the best parts is that one of those real friends was also diagnosed with PC in 2022 and has come to me for help on his treatment journey.

Also a brilliant time for getting your male friends and relatives to get tested regularly. If  PCa is found early it is curable - spread the word especially to close relatives - who if they have a close relative ie Father, brother, son diagnosed with prostate cancer are 3 times more likely to get prostate cancer.  I still 6+ years later go on and on about it to my male friends and relatives over 50 to get their PSA tests regularly.

I so agree with freefaller.  I feel like I'm on a mission to raise awareness and nag friends,in a good way.  I reckon 90% of men have no idea where there prostate is let alone what it does! 

But when it's not working you sure know.

The problem is that the narrative is that PC is highly treatable which is great...but then people don't see beyond that headline ...the side effects of the treatment are pants. Better than the alternative but still pants.

Yes its not good but better than the alternative - but then life is not always good but definitely better than the alternative.

You are right about most men not knowing where the prostate is, what it is and what it does.

With our family history - my Dad died with prostate cancer at 88 but not from it - never needed treatment just knew it was there diagnosed in mid eighties but so many other problems too.  My brother and I have both had it and been treated for it in our mid 70's and my brother-in-law diagnosed with advanced PCa at 54 and dying of it at 69 and both my wife and her sister having thyroid and then ovarian cancer - my wife died at 57 from ovarian cancer thankfully because of the warnings from my wife her younger sister was watned and had early treatment and survived her ovarian cancer I am always on at my two sons - now in their mid and late fifties to remember to get tested.  Luckily they have normal readings for their ages - I never did - was always that little bit higher than normal and had various prostate problems.  I do hope they stay cancer free - it will be a miracle with the family history.

I bless the day my brother told me about his PSA tests he had to have for his works private health insurance he was 43 then I was closer to 50.  Been having them ever since even though my Doctor always complained about giving me them.  If your Doc won't do it pay for a private blood test - I do know some Docs just don't do this unless you are having a blood test for something else.