DH prostate radiotherapy problem

So sorry to hear about these prostate problems. We've been through something similar and it is very horrid. I hope you get the help you need - dont be afraid to ask. It can often pay to be pushy, I've found. It goes against the grain but it really is sometimes necessary.

Nanatoone that is a terrible story, it must have been awful for you both. I am so sorry to hear it, thanks for answering my post and I hope it hasn't raised too much sadness for you.

The prostate is, to put it mildly, a bloody nuisance. When my husband was diagnosed with prostate cancer, the consultant said that 90% of men will have a problem with their prostate in their lifetime, although not necessarily cancer.

Yes Notagranyet, it’s was a horrible series of events. His prostate grew so large it completely blocked the urethra and he could not pass water (for over 26 hours), eventually they operated to put in a supra pubic Catheter but his ureters that came from the kidneys were damaged by the length of time it took for the hospital to do the operation. It was the most dreadful time, not being able to pass water and the pain was unbelievable. The ward nurse was so unkind. Some things I will never forget or forgive. Anyway, the idea then was to try to reduce the size of the prostate and then try again to pass water (it’s called a trial without catheter TWOC). I think the damage was so bad by then that nothing could be done. The consultant did do a particular operation to save his kidneys and ureters, which did work. He did say to me that when he opened my beloved husband up that it was a disaster waiting to happen inside him and the damage from the previous RT was horrendous. I’m not saying this to scare you, I can’t see this being the same for you. I guess I’m saying it because I’ve been told so often how lucky he was to survive 9 years with a terminal diagnosis and I always think, define luck! I hope your husband’s situation will settle, often it’s down to inflammation and not a dramatic event as explained above. There is a forum for prostate cancer sufferers run by the prostate cancer charity, it’s full of advice and idea. I don’t go there any more as it’s too painful for me, but it was a life saver at the time. Many women are there as well as men, men often don’t want to talk about these issues, but their partners do. Google the forum, it’s well worth a try and plenty of men will have had the same issue and have advice. I am thinking of you as I do know how frightening all this is. Please don’t think what happened to us will happen to you. We were very unlucky.

My DH had an issue with his prostate last year- was supplied with self catheter kits on the NHS. Contact nos for help 24hrs a day, and also was on surveillance - NHS urology clinic . He’s recovered now after a successful TURPS op. All is now back to ‘normal’. Maybe you should ask your Dr for further help and advice.

Do you mean Nanatoone that your hubby was left permanently with a catheter? That's shocking. The District Nurse came this morning and was very helpful, she had lots of advice but I don't think she said anything about an incontinence clinic, I shall investigate, thank you.

Ouch Notagranyet. My poor hubby wasn’t able to pass water at all so have a supra pubic catheter, which worked well but we made friends with the district nurses as we had to call them often as he got lots of infections. Your poor husband needs help. Do you have a local incontinence clinic? Ours was amazing.

Thank you for the responses, especially Nanatoone. He does have a nurse contact at the hospital and believe it or not, her voicemail has a message saying 'I'm retiring today' with nothing else! Probably she couldn't wait to escape!

I am horrified that a batch of temporary catheters have arrived for which we had to pay £40 and now he's been referred to the District Nurse! I don't think this can possibly be all that can be done so I /we will try Prostate Cancer UK as you suggest and other helplines. It doesn't help that he's really upset and rather panicked so I'm having to be the thoughtful one.

P. S. When I said he'd tried the folk remedies, that includes hot baths and showers, cold tiles and feet/hands under the cold tap, tapping the area of the lower abdomen, jiggling around on the loo and whistling etc, none of this works.

I would ring the prostate cancer nurse at the hospital or macmillan or your local hospice. My husband had RT several times (his had already spread to bones sadly) and it does cause adhesions or damge internally for many. I can't believe you've been left alone with this, I am so sorry for you both. Don't be afraid to ring any of the above, you do not have to be end of life to get the right level of support from these organisations. Also the prostate cancer charity has a nurse led help line which is brilliant. Maybe call them as a first point of call, they are so knowledgeable. Link is

www.googleadservices.com/pagead/aclk?sa=L&ai=DChcSEwiXjqfX7rmFAxWYmFAGHeSgBmEYABAAGgJkZw&gclid=EAIaIQobChMIl46n1-65hQMVmJhQBh3koAZhEAAYASAAEgKSgvD_BwE&ohost=www.google.com&cid=CAASJeRoffdW-99yVkGtFbz1RxjXKZ1dbMNin2ktMa9ioiOhQORh_eE&sig=AOD64_3xKS_p628qOHC2FwCYonTBBQGZUQ&q&adurl&ved=2ahUKEwjqr6DX7rmFAxWIVkEAHayUA3gQ0Qx6BAgJEAE
Phone number is 0800 074 8383.

They helped us a lot during the years we went through all of this. Much love to you both.

I'm sorry to hear this. My husband had radiotherapy for prostate cancer but fortunately had no issues. Were you assigned McMillan nurses? We were given names and numbers of three nurses. They were there for any problems. Good luck.

Hello, I’m sorry your husband is suffering and although I have no experience of his problem, I just thought maybe lying in a nice hot bath would relax things for him.