New diagnosis

Hi,

I really feel for you. It might be an idea to put more in your profile about your husband's diagnosis, age and treatment and you will get loads of help here from the wonderful men who contribute.

As a wife, I know what you are going through, especially when you mention hitting the bottle. My husband is on hormone treatment and gets very black moods but it varies from day to day. However, it is not helped by drinking which I am sure makes things a lot worse, especially when secretly during the day. 

Mine was diagnosed 18 months ago, and his psa is now down to 2.1 from 1200. It has spread to the bones but does not seem to be getting any worse. We know it is not curable, but the treatment is obviously keeping it from getting worse. Lots of other stuff going on too as well. 

Why is be being referred to different hospitals?

Best regards

Gina

Hello LCS sorry you are going through such a difficult time. My husband has been to different hospitals too! In 8 days he attended 3 different hospitals for various appointments! This is because the Hospital trust we use has 3 different hospitals with different facilities in each ie bone scanning in one, oncology in another and urology in the third. If he had opted for brachytherapy he would have been referred to a completely different trust miles away.

the whole diagnostic pathway is the most distressing experience ever! My husband was diagnosed by MRI in Sept but then there were all the other hoops to jump through before a treatment plan could be made. 

im sorry your husband is resorting to the bottle as this will not help him keep in as best health as possible to deal with the forthcoming treatment.

I have been in a constant state of high alert with this. I go to bed and fall asleep quite easily only to wake minutes or a few hours later - wide awake and unable to get back to sleep! My first thoughts when waking are ‘prostate cancer’. I’m watching my husband like a hawk looking for any signs or symptoms that he’s not well! He starts radiotherapy next week and I am scared silly. On top of the anxiety , I’ve cried buckets and , at times, have been so very angry! Us wives take it hard!

as we’re still in the midst of it, I can’t really advise you but I can, for sure, tell you that you’re not alone in this nightmare!

I am getting by because I have no option. I spend a lot of time thinking about holidays past and dreaming of one in the spring when, hopefully, the radiotherapy will be behind us and we can get some travel insurance! Ie I am thinking of nice things. I,m also eating too much comfort food and trying to undo the harm by going out for walks. I love having time with my grandchildren!  So, it’s not all bad all the time!

I hope things improve for you. Let us know how you get on….x

Hi, he’s 70, I’m 67. He was diagnosed in July 2022. The hospital trust has different sites for different tests, we’ve yet to find out where his op is to be. Thanks for your reply, it helped a lot to hear someone else is experiencing this situation. Family mean well but are struggling with their own feelings. It’s like a bereavement of the man he used to be and his coping mechanism is to drink. Not good. As you say, the booze will affect his body’s healing.,I’m worried about the after effects of the op & how he copes. Also, that as unofficial carer, I don’t know what I’m in for. Feel anxious and bit angry that there’s an explanation for me to carry out 24/7 care. Yes I love him but this is going to test our relationship enormously. Any advice, gratefully received.

I think it might be worth going an speaking with the GP and/or the clinical nurse specialists. It might be possible to get him referred elsewhere with a shorter waiting list, although that would likely mean further away.

Hi LCS

I am guessing that he hasn't been put on any hormone therapy but if I'm wrong then the HT will stop the PC. If he hasn't then contact the PALS team at the hospitals and see if they can find out what's going on. As Andy has said the Cancer Nurse Specialists are a great place to try as well.

Hope this helps

Stuart

Hi Worried wife

Easy for me to say, but please dont get stressed out about the RT. There is nothing to the process, once he has got his head around it. In fact, as the people in the waiting area are likely to be the same, he may enjoy the banter - I did! One thing though, ask for a diet sheet and stick to it religiously -low fibre, no cabbage or greens, onions etc or alcohol. Not funny if ignored!

Regards

Stuart

Hi LCS, sorry to read about your husband and the problems that cancer is having on your family, on the help section of Macmillan site is a free phone, they are very good, if you touch our icons you can read our profiles, I'm 75, Gleason 9 incurable bur treatable, get your husband to have a read, nothing is quite as hopeless as he thinks, I think he's just scared and that is very understandable. All the best Ulls 

Hi, when it comes to caring I think you will find your biggest task is moral support. As my husband has several other health problems, we have had many appointments to go to and I always go with him. He often just sits there like a rabbit caught in the headlights and looks to me when he is asked questions. He either does not understand foreign accents and I have to translate or simply doesn't compute the medical terms which I then interpret for him. He would come away and seriously not have a clue what was said. I sometimes think it would be better if he just sat in the corner with the toys and let me get on with it!!! . 

He was a successful business man and ran his own company for many years. However, since his illnesses and the hormone treatment his mental capacity is definitely on the decline. We have some marital problems but I am still caring for him and living in the home. As a carer I don't think you will find it too overwhelming. On the physical side, incontinence can be a problem. Make sure you get incontinence pads from the nurses or whoever supplies in your area. I bought a small bin and some liners for their disposal to put in his bathroom. The washing machine does get a bit more of a workout when he has accidents but this is nothing to when he was doubly incontinent due to microscopic colitis!  He suffered four months of explosive diarrhea - awful for him and as bad for me!!! Thankfully he is now on steroid tabs and seems to be back to just the bladder problems. The hardest part will be his moods and depression. He may be okay if he is not on the hormone treatment, but that plus the drinking is the side that really gets me down. It is like living on a roller coaster and I never know which mood he will be in.

Please don't hesitate to ask me any questions. I was trying to add you as a friend on this site, but couldn't work out how.

Gina

Hi Gina, if you want to request friends, tap the down arrow, then you icon, more and then friends request 

Thanks for sharing your experience Gina. I’m amazed at how you’re coping. Sounds like you’re an old hand at it now & take it in your stride. I need to think of him & it (the disease) as separate maybe. So I don’t get angsty when there’s accidents. Also need to get prepared ie pads etc. I think forewarned is forearmed whereas hubby is in denial & won’t discuss it.  Lynn