My husband has incurable spinal & lung mets (the primary is bowel cancer, diagnosed & treated 2 yrs ago) we thought he was cured.)
He has been home now about 6 weeks. He was admitted as an emergency to an orthopaedic ward as it was thought he had a slipped disc, but the MRI & CT scan told us a different story. he was moved to other wards but in the end sent home as there is nothing more they can do for him. He is now unable to walk, or sit up unaided and has to be hoisted from bed to chair or chair to bed or commode or anywhere.
I care for all his daily needs and attend to all his personal care, the district nurse comes in once a week to check his pressure areas.
We did have carers for 2 weeks but in all honesty they weren't really useful, they were nice people and helpful when they were here, but the system isn't geared to help people when they actually need it, they weren't here when he needed the commode, they weren't here when he needed to move out of bed because the pain was too great etc, so I took a quick course in hoisting and in the end we decided to stop the care, our daughter, who lives fairly locally with her young family, also learned how to hoist her dad.
So really we are managing. Intially after feeling very abandoned I think I'm coming to terms with things, we seem to have had to nudge and cajole and fight even for support. We have been on both sides, as I know a lot of you also have, of the cancer merry go round, and it seems to me that if you are treatable all the the stops are pulled out, if you're not......well that's it.
We had to ask the GP to visit - despite them getting the discharge summary etc - when she eventually did - we had to ask for referral to the palliative care team - who, incidently have contacted us once , but have still to arrange a meeting.
He has recently had acute urinary retention and had a catheter fitted and then last weekend when I checked his catheter bag on Saturday morning it was full of blood red urine, I called the district nurse who said to make sure he drank lots and call back if there were any changes, within an hour he began to become very ill and shake uncontrollably, when I called her back she advised 999, so thats what I did. The paramedic thought he may be developing sepsis and arranged a crew to take him in. It was confirmed and he has now been in a week, it took a while for him to begin to feel better but by Thursday he was feeling quite sparky and they arranged for him to come home on Friday . Then he develpoed diarrhoea - and because of his cord compression has no control and can't feel that he needs to go which is difficult for him and the staff. They are suspicious that it's Clostridium Difficile - which given the amount of antibiotics he's had it probably is. He's been moved to a side room and is feeling very ill.
You have no idea when you're in this situation what's in store, and I often feel overwhlemed with the responsibility of caring and I feel no one person can just sit down and say "This is what's going to happen". I guess they just don't know, but I find the not knowing very difficult
I am lucky I have a lot of support, our son & daughter live locally and we have freinds who offer help and a chance to rant and my family are available if not local but I still feel a little overwhelmed sometimes.
I wonder today what the next few days will bring
