Now I am pissed off.
I was called earlier in the week, twice, to ask me to attend a 10.30 appointment with the Dr leading the tumor assault. We got there in plenty of time, and waited till after 12 before being seen. It was as if we were not expected and the consultant obviously had not prepared herself to see me. If people are busy I can be patient but it was only during the consultation did certain things come to light and one of those was that she didn't know i was coming in.
I was told that the first surgeon i saw, Mr Doom and Gloom, had written a letter to say he thought i was a prime example for a transplant. Not only do I recall his words at the time I first met him, but I think I wrote on this blog, that he immediately dismissed this as an option very early in the diagnosis. After the surgery when they had all inspected the liver whilst I had been out on the table bearing my insides to heaven, they sat around as a group and this was again discounted as an option. So why then write a letter saying otherwise?
I am considering asking. I hesitate as it was indicated the letter was met with anger from the consultant.
The chemo is not chemo as such. It is a 'multi-targeted kinase inhibitor' drug and the consultant felt that if BUPA do not fund it (more on this in a second) that it is possible that it will get the go ahead as it has now done in England, although the Scottish NHS have not yet made that decision[link]. The decision in England is based on whether the drug will work on the patient over the cost of it and it is felt that the door is opening in Scotland.
Sorafenib is the drug of choice, with Doxorubicin as the alternative which is intravenously delivered chemotherapy. CT scan shows the tumor has grown to 7cm. Sorafenib is only available through BUPA funding.
So, on the 17th December i had a conversation with BUPA and gave them all the relevant details and contact numbers for the consultants secretary. I myself have phoned many times to leave messages and it can be days before anyone answers if they ever do. BUPA, according to the consultant (who had asked me to come in but had left me waiting so long because she didnt know i was there!) had not been in contact and she gave me email details to give to BUPA. Some of the earlier indications like the length of treatment During this i could hear the BS siren going off.
BUPA answered the phone when i got back home and looked at their notes where they recorded, as these companies do, when they had left a message. So I asked BUPA what they needed , put this in an email and sent it off to the consultant with fax details to send the required information to BUPA so that they could agree to the treatment and we can get started. BUPA will inform me when there is contact. She also was ignorant to a letter sent by the liver nurse. I have now put the two in contact with each other.
Hello Dr xxxx,
After this morning's appointment, i have contacted BUPA and spoken to a Mr x xxxx.
BUPA require a medical report which will include
- the condition
- treatment plan
- facility where treatment will take place
- details of drugs and doses
This could be faxed to 01xx xxxxx and you can contact Mr xxxx directly on 0xxx xxxxxx
My BUPA membership number is xx/xxxxx so they know who i am.
As requested the details of the Senior Hepatology Nurse is xxx xxxxxx - xx-4xxx
I look forward to hearing from you,
When i got home i had a visit from Steve, pictured here in the vest when Bob Spour awarded the Red Arm Bands (black belts) to some of my Thai guys. He's been doing his own thing recently so i hadn't seen him for a while but it was great to see him, even f he reminded me of Capt Haddock.
Tomorrow i have the HR manager at my work coming to see me. This cartoon seemed appropriate!
This is happening now
1 year ago