What if I dont want treatment

User

Posted 13 Sep 2019 at 20:28

Elephant in the room ... depends a bit on age but your mum is probably scared to say the word, it is a generational thing, I think. my mother-in-law used to mouth it rather than say it out loud. As for other people, what do they say? What have you said to others when you first saw them after a cancer diagnosis?

When John was diagnosed, one of his staff would not come into his office; he stood at the doorway to say whatever it was needed saying. John said one day "it's alright, you can't catch it from me'" and the guy said "well you can't know that for sure, can you?"

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Sep 2019 at 20:41

Ian

One of my first concerns when diagnosed was smelling of urine, having worked in and visited EP homes and working in conjunction with the odd incontinent person it was my biggest fear. Have you considered one of the sheath systems ? When my leaks were a little but often I used some toilet roll in a nappy liner between my penis and the pad. In the event of a small leak I would change the tissue and liner. I have found tenna pads quite good at containing any odour.

I never used "the c word" I have always said cancer, in the beginning I did seem to hesitate saying the word but not anymore. We have had a fair amount of cancer in our family, so talking about it has not been an issue. Having said that, I did find it easier to talk to work colleagues and strangers about cancer and it's effects.

Hope you get a solution to your issues.

Thanks Chris

User

Posted 13 Sep 2019 at 21:36

Thanks for the responses,

I need to try pads or something, it's just I associate that with old people lol. My mum is 83, she is what she is, normally extremely blunt and to the point, but not about my cancer. We did fall out for a year over the film "The Third Man", I can't even remember what the argument was about now! When my eldest niece visits I have to sit in the conservatory - in her ignorance she thinks her and her boyfriend could catch cancer from me. My dad, bless him, asks me how I feel but then changes the subject when I try to tell him.

I have not been told the type of prostate cancer I have, all I know is that it has metastasized locally. Whether or not it is the cause of my bowel and lung cancer I have yet to be told. Hopefully that will be next week. My eldest boy, 27, is really struggling with seeing me as I am now - I was his teams football coach for 10 years and the "hardman" of the Sunday league team when he was growing up - but my youngest son, 25, is completing his masters in bio -chemistry and genetics and has just completed an internship at the main hospital in Oslo (where his girlfriend lives) and is more relaxed about it. I have gone from a man to a mouse in 6 months and apart from the hormone treatment - which I hate - have not had anything else. Feeling weak is worse than the pain of this damn thing. Call it stupid pride, but I can take the pain far more easily than the indignity - perceived or otherwise - of this disease.

I am really at the point where, all things considered, I can't see the point of carrying on any more. Every day is a drudge, fogged up on medication and sleeping pills and no one I can really talk to.

More and more I think I will just let things take their course.

Take care all and don't let my ramblings get you down.

Ian

User

Posted 14 Sep 2019 at 00:01

I also deal with elderly family which use incontinence pants and can smell, but this is due to failure to change them when they've got saturated. I've been wearing incontinence pants and now pads for 2 months, and they don't smell with small amounts of urine (they have some sort of odor control in them). I've never dumped a bladder full in them though, and if that did happen, I'd change them ASAP.

On the subject of cancer, I'll bring it up occasionally, usually in a humorous way, like mentioning some side effect of the hormone therapy if relevant to a conversation. I do this to make it clear I'm happy to talk about it, but I don't do it continuously - no one wants me to talk about cancer all the time. Sister-in-law mentioned my nephew is going through puberty, to which I said so am I, but in the opposite direction. It got a laugh, but also opens the opportunity for those present to ask me more about it if they want to.

For talking, you should try out a local prostate cancer support group. They vary considerably, so I can't guarantee one near you (if there is one) will be ideal, but it's worth a try. In addition to their main meetings, they often organise things like weekly gym sessions, walks (which are great for talking), massage and acupuncture which are great for relaxing, etc. If you say which town you're in, someone here might comment on any local support groups.

User

Posted 14 Sep 2019 at 00:08

In all the years I have been on here, I have never heard of anyone that was incontinent just with HT. You should get that checked out as it isn't normal!

The type of cancer should be written on your diagnosis letter - if you don't have a copy, ask your GP practice to print it off for you.

Edited by member 14 Sep 2019 at 00:09 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Sep 2019 at 21:11

Lyn,

I was incontinent before HT. Because I had so much else going on in my life I didn't mention it to my doctor, and then only in passing, until I had had symptoms for over a year. Typical man, don't do something important until it is too late. Mea culpa.

Ian

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