Stressed

Hi Freda 

Welcome to our community, I hope you find it both informative and supportive.

Sorry to hear about your husband, if I read things right that sounds like a quite rare form of cancer and that I can relate to as my wifes Leiomyosarcoma also falls into that category. Janice's route to diagnosis was long as the doctors seemed quite convinced she had cancer but had difficult finding it and in the meatime missed another serious helath condition that ended up with her in intensive care. Still she recovered and then had chemotherapy though that caused other probelms and then a second chemo ended up making her cancer stable and for over 10 years now it has remained that way. 

Something I found quite helpful was looking at Your feelings when someone has cancer as I found being able to recognize these emotions and accept them as normal and valid helped to make them a little less overwhelming. I also did a living with less stress course with Maggies. A key element was learning to appreciate what we have day to day rather than going all "what if" because I could imagine so many things that never happened. The conscious breathing exercises are great for helping me relax and get some sleep but also when life decides it it time to throw a new curveball.

<<hugs>>

Steve

Thank you for your advice and I am glad to hear that your wife’s cancer is stable. I will speak to someone at the hospital about support groups.

Sorry to hear this, especially that you’ve had to wait so long for a diagnosis. My husband has tumours in his urethra which developed some time after he had his bladder & prostate removed (which happened two years after one kidney was removed due to a cancerous tumour.). We found it really hard to get anyone to pay attention - he was bleeding lightly from his penis & we kept being told it was normal. Which it might have been in the first weeks after the bladder removal, but not several months later. After approx 7 months of this, he was in hospital with a serious kidney infection. I made sure I was with him every morning when the urologist visited & kept banging on about the bleeding. After a fortnight, on the day he was due to be discharged, they put a camera up & saw that there were tumours there…. Two years on and, far as we can tell, they aren’t developing, presumably due to the immunotherapy he has fortnightly to treat the secondary lung tumours he now has. 
We’ve been told that surgery would be too invasive - my husband’s health isn’t great now & he’s 79 years old, so he just has to live with it. It’s probably the thing that has affected him most, bleeding & having clear discharge means he has to wear pads 24/7 which need changing regularly, especially in warm weather. We haven’t found any pads explicitly for male bleeding, they’re always for incontinence, and the ones he was prescribed were huge! We’ve now found some shaped ones that are much better, even if he can’t get them on prescription. We have to be careful if we stay in hotels not to get blood on towels & he finds it embarrassing explaining to new carers, none of whom have come across this before. 
Having said all that, he’s learnt to live with it & at least the tumours are kept under control by the immunotherapy. Sorry for the long post, but it’s unusual to find anyone with a partner with this particular issue!