Last August, Mum got diagnosed with Gallbladder Cancer.
Between myself and my brother we had to push hard for everything. The NHS didn't even offer Chemo, so we pushed for an Oncologist consultation. Unfortunately, Mum being early 80's, we were advised it couldn't be provided, as it was down to a "quality of life" situation and Mum probably would not benefit from it (or maybe an extra month but feel really ill from the side-effects).
After several hospital admissions, and numerous blood transfusions (probably more to come), Mum is confined to home, which is where she wants to spend her final days.
We have long since engaged the local Hospice for Palliative care and advice and they have been great, along with "Continual Care" providing 4 daily carer visits, but this is never enough. The local hospital never told us about this, so found out the hard way - Continual Care, basically gives care (via a Fastrack system) which the NHS fund and is means tested on certain criteria...
Despite doing so so much for Mum, from simple visits, daytrips, shopping, being there, listening, arranging lots and caring etc. I still feel it is not enough and that the NHS system could have been more supportive. In addition to being denied surgery, Chemo and Radiotherapy, no other options were forthcoming, say for example any clinical trials that Mum could have been part of. I recently read an article on a drug called Xilonix, which was being trialled in Bournemouth Hospital by an Oncologist called Tama Hickish. I contacted him, but am yet to hear a response.
So, what I want to do now is reach out to others who have had this form of Cancer and get your experiences (good and bad).
Hope there are people out there who can get the treatment they need and hope I can be a pair of listening ears...
