Husband just been given terminal diagnosis

Hello Vallez22. I’m so very sorry to hear of your distress.  I know how devastating a diagnosis of prostate cancer can be for us wives and I know how those tears just keep on flowing - often at the most inconvenient of times.  ( stupidly my tears come whenever anybody is being kind or sympathetic towards me! Why?)

like you, we have 4 children and have been told they are at high risk of getting either breast cancer or prostate cancer because of the high incidence of both in my husbands family. Our children are older than yours but, because of the risks to them we have decided they should be told all the facts in full and encourage them to take all reasonable precautions ( mammograms, PSA checks etc). In turn, our children have actually been very supportive but also added a steadying influence for us as we have been reeling at times.

 It is difficult to say how much or little you should tell your children without knowing them but our daughter asked us not to say anything to our grandchildren. However, at the first opportunity they had to ask me, they came outright with some very blunt questions. They had obviously overheard conversations somewhere!  I was well and truly put on the spot! But I answered their questions honestly - no false promises but answered simply, honestly and with as much reassurance as I  could. So, when they asked if my husband had cancer, I said, ‘yes’. Then they asked ‘where?’. I said ‘prostate’. Then I had to explain where the prostate is!  The next question was, ‘is he going to die?’.  I said that eventually we will all die but that I hoped that it would not be for a long while yet and that the doctors are going to try to make their grandad better.  They were understandably worried about death and dying having never encountered it before in the family but I felt it was better to be honest rather than tell lies. I spent a lot of time trying to reassure them and answer their questions. I’m not sure whether this was right or wrong.

everyone keeps telling me I have to be strong for my husband. Do I really?  Looking at it another way, my tears show how much I love him and how much I care about what’s going on?  Yes, I will give him every bit of support possible in whatever way he wants it but I can’t fundamentally change how I am as a person and my own emotional reaction.. I don’t think, either, he would want me to put on a false front and lie to him and act as if I hadn’t a care in the world. 

but - that’s me!  You will find your own way through this nightmare - we always do get through horrible life events somehow, don’t we?  In a time of my life when things looked very black, somebody told me that we never get sent more than we can endure.  Is this something you can grab on to to help you through today?  Once you’ve ‘faced the world’ today, you will know that you can do the same tomorrow, perhaps? 

I don’t think I have been able to really answer your questions but I hope my own experiences have perhaps helped you to understand that you are not alone in this. Also,  We all have choices to make in how we deal with the minutiae of this diagnosis even if we feel we have lost control of the broader picture. None of us know whether our choices are the right ones for those we love so dearly. We just have to do what we think is best for them.  

I hope your husband thrives on this new treatment and I send you both my very best wishes!

Hi Vallez22 - I am so sorry to hear of your husband's diagnosis - I have been on Decapetyl alone for 12 months and it is worrying to read your story. I am aware in the New Year I am due to start Radio Therapy to progress my journey further so things for me are looking up.

My personal journey has been well supported by Mrs Millibob and our 4 children aged 35 - 24. We have told them everything - from the lows - why me etc - to the highs, yes more treatment. It's hard, I know and I have tried to be positive throughout. Without the support of my wife and children I would have been lost.

All I can say from the male side (I do have a very good female side too - it's the treatment) is be there for him and support him in every way you can. I am aware you need support yourself and I would look to the children, MacMillan's of course and there are plenty of people on here to chat to - if you don't want it public - put in a friend request and talk in private. It may appear strange at first but I find a problem shared can be resolved.

I am sorry, I wish I could help - I am crying writing this (again my female side) but if we can do anything for you just ask. It's good to talk.

My best wishes go out to you and your family.

Kind Regards - Brian.

hi vallez 

firstly i've had spots on my spine/pelvis/rib and sternum for 4 yrs nearly they don't cause me any issues as of now .

been on abiraterone for 3 and a half yrs its does a gd job no increase in tumour size all this time , coupled with zoladex injections every 12 weeks its holding it at bay .

i do take alternative medicine as well alongside this but something is keeping the cancer in check atm .

i'm still working as a gardener and fairly active which i think helps keep a bit of weight off lol .

be positive and try to keep hubby the same and look into alternative ways to treat urself as well there's loads of stuff out there 

Thanks for your experience - it gives me some hope that it will be longer than the worst case scenario. 
Can I ask what alternative stuff you take please? We’re open to anything that will help. 

My mum and my aunt both had breast cancer and were written off by the NHS (although I can’t fault their treatment of us) and went to an ‘alternative’ hospital in Mexico that kept them alive and well for many years so we’re more than happy to consider alternatives. 

Hi

The worst news you could possibly receive for any one, remember this is some time in the future, Arbiraterone is a wonderful medication and may well extend prognosis far past what he’s been told. I read a lot of The Prostate Foundation in America, they have some marvellous new medications coming out all the time and if they do we get them too.

Your worries are totally expected, you may have done this, but if there’s a Maggies centre near you, their really good at understanding your pain, or phone the McMillan nurses they can call round for a chat. It’s hard I know, but your children have probably read about your husbands condition, so hearing it will not be to much of a surprise, don’t give up yet, if he’s like me then I believe there’s a cure coming today tomorrow or very soon, until then fight and be positive.

Stay safe

Joe

I've been living with metastasised prostrate cancer since 2017, also small tumours in ribs, spine and pelvis; currently taking Enzalutamide (since January 2021), which is a similar drug to Abiraterone, and PSA currently below 1.0. Can't say I feel ill, though the drugs do make me tire easily - and sweat!

Everyone's different, no-one knows what's going to get them in the end - it may be the cancer, it may be covid, it may be one of the dumb car drivers in my part of the world who love to drive round bends in the middle of the road. As long as I'm reasonably fit I'm not going to worry about it and spoil whatever time I have left, whether that is one year or ten. 

New treatments are being developed all the time, so I'd advise being determinedly optimistic. You and your husband should make the most of every day and, yes, tell your children everything. Cancer is an illness, not something shameful.

I take about 10 -  15 supplements a day and cbd oil 

Thank you Worried Wife for sharing your story and experience with me. 
The children have all known about the cancer diagnosis since the initial treatment started in 2017 and we have been honest with them in telling them that it has spread, it can’t be cured and that we have been offered the chance to participate in a trial to help prolong life expectancy. We told them last week what the first oncologist said about years, but it’s the new prognosis of months that we can’t bring ourselves to tell them. We’ve talked about it ourselves since my original post and decided that there’s no need to share that - who knows how long we’ve got? Everyone is different. Of course, when the time comes that there is no other course of treatment available, that will be shared. It’s only fair. 
I absolutely get what you say about not hiding your feelings. I think there’s a part of me that’s trying to protect myself, almost withdrawing from loving him to stop the hurt. But reading yours and other replies, I know we just need to be thankful for every day that we have together and make the most of them. 
Thank you for taking the time to reply and for your good wishes - the same back to you and your family. 

Thank you Vallez22.  It seems that you and your husband are working through this terrible diagnosis and determining how to handle things?  

I honestly don’t think there is a right or wrong way prescribed in stone and we all can only do what we think is best for ourselves and our loved ones.  I skittle along from tears to anger to a desperate need for information/ knowledge! This week I’ve been trying to improve my knowledge about radiotherapy and have managed 6 days without tears!  Next week, though, we have an oncology appointment so the calm I’m currently experiencing might be shattered? 

I think there have been some very positive replies here which can give us all so much encouragement.  I‘ll be thinking of you and sending my warmest best wishes

Thank you so much for taking the time to share your story with me. Decapeptyl worked brilliantly for my husband for 5 years so I hope that you are able to take comfort from that in facing your own journey. 

I get you having a feminine side - that’s the drugs for you! On the positive side of that, it’s meant hubby totally getting my menopause symptoms when I am suffering! 
Thank you again, all these messages make me feel less alone. 
The best of wishes to you and your family.