Anyone with advice

Hello and welcome to the group, although sorry to hear your husband is in constant pain. Radiotherapy is generally painless and takes about 20 minutes each session. Tiredness does creep up as the weeks go by. It is important to make sure he stays well hydrated with regular drinks of water. I had 6 weeks of it and found it not too bad. Best wishes.

Thanks for your reply.  I am more concerned I think because of the pain he is in now and coming home with kidney drains in.  Will have to see how we cope.  

Hi Chatty wife. Do they have any idea what is causing the pain? What treatment has he had so far? We have all had a certain amount of pain and discomfort, but your husband seems to be suffering more than most. Best wishes.

To be honest they havent said but his cancer is at the bottom of the bladder nearer the prostrate and the pain is really in his penis.  Seems to be that even with a catheter in it doesnt help.  Getting quite frustrated as they wan to send him home but I'm not sure he is well enough even though I obviously want him back.

Hi Chatty wife and sorry to hear of the situation. As you are undoubtedly now his Carer, have you signed up with your local Carers' Association? They vary a lot from area to area but can be a great source of the support you need to help you look after your husband. They will also help you find other services you might want. 

You might also want to ring the main MacMillan helpline for advice on the pain management.

And, slightly unlikely but worth considering if they are stuffing him with pills unsuccessfully: about 7% of people [and about half of people with autism/Asperger's] happen to have certain dud genes.[CYP450] These mean that many standard painkillers and other meds inc Prozac [fluoxetine] and even I believe some antibiotics, do not work properly if at all, and side effects are likely to be worse. If you think this might apply to him, be prepared that sadly very very few NHS staff have the slightest clue this problem even exists. So you have to be a tactful but assertive advocate. [This applies to my husband who has BC and Asperger's, which is how I found out]. 

With hope you can both benefit from improvements soon, 

Denby

Thanks