Frustrated at every turn.
My wife beat breast cancer 3 years ago thanks to chemo, surgery and radiotherapy. We thought that was the end to it. Each year they call her in but only for a mamogram, not for secondaries / metastases.
GP refused a home visit and her ‘junior’ (very experienced ) referred her to a chiropractor. After his handywork she was in agony with back pain and couldn’t get off the sofa.
She was bleeding fresh blood in her faeces but was unable to get to toilet. GP refused a home visit so I pleaded with her partner who had referred her to the chiro and he came to the house. When he saw the state she was in he immediately had her admitted to hospital. The Doctors suspected parathyroid tumour as her calcium was so high but blood tests proved negative. Their next ‘guess’ was metastatic cancer of the sigmoid colon but her kidneys were on the verge of failure so they gave her lots of drips and 2 bags of blood and waited for her kidneys to improe so they could do a CT scan with contrast solution. They felt she wasn’t strong enough for a colonoscopy so they X-Rayed her and did some ultrasounds.
They found abnormal bone growth on her spine, pelvis and ribs so they biopsied a rib. Still no results from the biopsy but eventually managed a colonoscopy which showed colon was clear. Blood had come from a burst haennerrhoid due to constipation.
So that ruled out sigmoid colon cancer but when they were able to do the CT scan they found a tunour strancling her spinal cord and secondaries in her liver.
They bombarded the tumour with huge doses of radiotherapy to make it release the grip on her spinal cord enough so she could stand up with support and shuffle around in a zimmer frame. Almost immediately they wanted her to ‘unblock’ the bed and come home. No assessment was done as to her ability to exist at home and no assessment of the home with a view to her needs, being unable to climb stairs at all.
They telephoned me on Friday morning asking if I would be home to receive her, but on Thursday I had visited my GP and he said I was probably in heart failure, so I had a panic attack. I hadn’t had time to tell my wife about my heart failure and although I was already physically disabled, long-term, and my wife is my registered carer, no thought was given to her fitness for discharge into my care.
I didn’t think it was supposed to be like this, my wonderful NHS treating my lovely terminally ill wife of 36 years (she’s 62, I’m 68) as a bed-blocker!
They arranged (without asking me) for a commode and a bed-rail to be delivered this morning to my house but they still haven’t come to assess the home and I can’t get them to give me a prognosis.
I am distraught - 2 years ago last September I had a stroke which paralisedmy left hand and face, and I still haven’t got much of my strength back in that hand although I can move it. I had my big toe amputated due to diabetic neuropathy and had to retire early with balance and eyesight problems. There’s no way I could carry a commode bucket upstairs to dispose of the contents in our only toilet.
We scrape by on Pension Credit Guarantee, my DLA and Carer’s Allowance. Google tells me I need a letter from the hospital stating my wife has 6 months left before I can claim anything to help her lead a dignified life.
What has David Cameron done to our once-excellent NHS and Benefits service?
Someone please suggest things I can do, not things to make life even more impossible than it already is and help me make my wife’s remaining time comfortable and dignified.
I’m at the end of my tether.