Briefly my mum was diagnosed with bowel cancer back in 2014, they operated and it was a success. She had a stoma and after a year they reversed this as she was all clear.
Anyway, back in oct 16 she was is agony, she was still under consultant and one day it was so awful she had taken loads of painkillers and was very woozy. I contacted her consultant and demanded he see her, I went with her to the appointment and he examined her, told her it was nothing sinister, just scar tissue and sent her away with numbing cream.
Jump to January 17, the pain hadn't improved, they just upped the pain relief. She had a routine app with the consultant and before she left she lost bladder control. She told him this when they got there and he panicked, sent her for full scan. That's when they discovered the cancer, now in her peritoneal and sacrum. She started chemo and radiotherapy that week. We were told it was advanced and incurable. No one could operate. They gave her 12 months.
Then at an appointment the oncologist said he had contacted a surgeon who might be interested. He decided he could help mum, he aimed to remove the sacrum and tumour. No guarantees but worth a try. Mum had the op, it was extensive as was recovery, he thought he got it but again we received bad news a few months later after a scan showed it was back.
Mum has had chemo, radiotherapy, a blood clot, so many infections and hospital stays, the last being after christmas this year which was borderline sepsis and we nearly lost her. They took the decision to stop treatment. She's been amazing.
Since stopping chemo though back in Feb time we feel deserted. They are refusing to scan her as they say it will only stress her. They've indicated she will get through summer but unlikely the end of the year but very non committal. The only person she sees now is her GP. We've been in contact with Macmillan but not even had a visit. We've had someone out from severn hospice once. The district nurse came a couple of times but that's it. I feel she's really unsupported, i don't know where all this 'care' is? No one seems interested, we are handling things ourselves. Through the district nurse mum has a carer come in to get her washed each day but they know nothing about her condition really, nice enough but not cancer specific. They say they generally just pop to see older people.
Am I missing something, I feel quite angry, my mums gp just ups her morphine and says that's all she can do and thats the nature of her illness. She now on 90mg morphine a day plus oramorph. Is that a high dose? I'd just like an idea of where we are in this? No one seems interested in the hell we are going through. I don't know what else I can do. My wonderful mum is dying and I feel totally in the dark. Shes only 60, it's hard to get through the days sometimes.
