My husband has prostate cancer which has spread to his spinal cord resulting in his complete loss of bowel and bladder function.
He was diagnosed 11 weeks ago and has been home from hospital for three weeks. We have the rapid response nhs carers coming in four times a day because he can’t use his legs so needs to be hoisted out of bed and into a wheelchair chair and later back to bed. The incontinence is sorted out by me first thing in the mornings and during the night. I’m struggling with all the chaos in our home and the demands of being the sole carer. His family aren’t helping, they haven’t even come to see him since he came home. Today has been a really bad day. I have only just finished cleaning him and the washing machine is still going …third time today.
I feel awful for getting frustrated with the situation and so sad for my husband.
the wheels of all the services grind so slowly that we have up to 12 week waits for referrals to services to be processed. In the meantime we are buying essential items from Amazon and I am running round the shops and pharmacies looking for things.
the bowel incontinence is the worst part of all this, up to five times a day. Doctors can’t do anything to help other give him medication to stop it and then to start it again. I feel like my home, clothes, everything is dirty and smells of poop. Just needing to say that to people who might understand how I am feeling without judging me.
Hi Teatowel
Firstly I am really sorry to hear of your husbands diagnosis of metastatic prostate cancer 11 weeks ago. I see that you have also joined the Prostate group and that is also a good place to seek support from others going through similar.
Secondly I am sorry that you have had such a bad day and can appreciate why. I am glad that you have the NHS rapid response carers in 4 times a day but appreciate that it must be very challenging to wait for the referrals to all the different services that you both need to be processed. I get that it must feel chaotic and overwhelming at the moment.
The incontinence must be very difficult to manage- are the carers who are coming in able to support further in anyway? I wonder if they or your GP is able to get an urgent appointment with a continence advisor arranged.
This link is for an organisation which helps with incontinence and also has a support line. It may be worth contacting them for some advice.
Bladder & Bowel UK home page - Bladder & Bowel UK
Bladder and bowel problems | Macmillan Cancer Support
It may also be an idea to give the Support Line a call and talk with one of the nurses about ways to cope whilst waiting for the referrals to come through. Bowel incontinence in someone you love is extremely difficult to cope with and I do understand how frustrating and challenging it must feel. You should not feel awful for feeling as you do- it is a very natural thing to feel in the circumstances.
We are here if you need us- but do consider giving the Support Line a call
Jane
