Where do you turn?

[NigelS]

Hi, My mother has recently had major surgery for Bladder Cancer. Initially a tumour was found near her urethra but with the delays endemic of public health by the time she was operated on it had spread throughout her pelvis. End result she has had the bladder removed, a bowel resection, the pelvic wall removed and the uteris. Since her transfer from the main hospital to her release we have had zero contact from the palliative care team, her uroligist, renal team etc. It has been left up to her GP and a Blue Care Nurse to decide her care. I have had to send her back to hospital twice by ambulance. The doctor who is supposed to be in charge of her has forgotten to visit her twice now. The problem is the balance of her medication in particular her nausea. When she first came home i managed to put 4kg on her but she has now lost at least that. Since so called specialists are useless is there some kind of support system i can tap into? I need guidance in nausea control, pain management, diet, excercise etc. Hope someone can help, Nigel.

[Jules2]

Hi Nigel I would be getting onto your gp to put some pressure on your treating doctor. Or the gp needs to liase with the specialists as to what after care is most suited to your mother. When I finished treatment I had a few problems and my gp simply phoned the oncologist and he recommended some medication and that was then sorted. I hope things improve a bit for you and your mum. Once we finish treatment there is little support out there and a lot of gaps. Take care Julie

[NigelS]

Hi Julie, Thanks for your comments i appreciate them. Sadly the doctor's continue to fail to listen even after mum has been returned to hospital twice in the last 3 weeks. This latest adjustment to her medication is an abject failure as she has been vomiting every day since she came home. At 36kg she is not doing well. We start radio therapy on monday so i pray she doesn't have an adverse reaction to that. Take care, Nigel

[Jules2]

Nigel Two things ... carbs - sustagen drinks are great and an easy way to try and put some weight on and the other, just keep pushing for answers or help. I know it is the last thing you feel like doing at this point in time. Do you have a cancer nurse assigned to your mother? I found mine invaluable for helping me with things that weren't going quite smoothly. Julie