My husband was diagnosed nearly 2 years ago with colorectal cancer, liver mets and a sacral lesion. I am his carer, he is 76 and I am 75. During the course of all his treatments, I have never been sure just who deals with what. His FOLFIRI caused some awful side effects to his skin, despite telling the staff on the chemo ward and eventually his oncologist and the District Nursing service who service his picc line, I felt very much left to deal with it all myself. They’d happily tell me it was a side effect but not how to manage it or who I should ask. This has been a continuing theme, he had pressure sores, DNs would look at them and say I could use this or that but they apparently don’t dress wounds these days, the ward would sympathise but as he was there for chemo it didn’t seem to be their remit either. I’m so weary of trying to cope with it all, his double incontinence, took 6 months to get hooked up with the service but they never visited just sent 3 months worth of supplies followed by a contact from the bladder continence of whom I’d never heard who also just sent supplies but no one to advise how to put the sheath on etc. . Who should be dealing with his problems, I’m providing care and meeting his needs 24/7 but it’s wearing me down now, I’ve not long had a knee replacement and that has sandbagged me because I really wasn’t expecting this level of pain!
I have recently completed a social services assessment to try to have him assessed for aids, there isn’t a human to talk to, no phone numbers and the outcome was an email saying they’d got it, it would be prioritised and not to contact them unless something had changed. He’s terminally ill, been given six months, is this the best that’s on offer? I used to work in care and people were referred at point of need to the service that would help, I just can’t get my head round how I am expected to cope.
Hi Uphillstruggle and a very warm welcome to the Macmillan Community but I am so sorry to hear about your husband’s diagnosis and your ongoing challenges.
Navigating this journey can be such a stressful and challenging time but talking with and getting support from people who are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our general cancer……
Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
