"So you've had a break and when you came back you went onto just Cetuximab. Why?" he says
"Because Dr M your other oncologist said I had to because the Irinotecan and 5FU was going to turn my bone marrow into mashed potato or something." I replied. Not sure what he was expecting me to say "Oh yes, I took a medical degree and specialised in cancer treatment in the four weeks I was off and decided this for myself!"
Turns out that Dr M shouldn't have done that. Not for any clinical reasons you understand but because of the ludicrous rules of the Cancer Drugs Fund which cough up the cash for the Cetuximab. Now I'm none too keen to start back on the 5FU because quite frankly it's a bloody pain. The side effects are nasty and carting that bottle with a tube stuck in your chest around for 3 days is a pain in the arse quite frankly so I ask if there's any wriggle room in the rules.
So Dr A being one of the good guys pulls up the CDF document and we go through Cetuximab together with a fine tooth comb looking for loopholes. Can we say this is a third line treatment? What about of we say the side effects are really bad from 5FU? Is there an exception if you're a bad tempered fire breathing lizard?
Nope, the rules have been drawn up by government wonks and are a tight as a duck's posterior, in my situation you have to give some sort of Fluorouracil type chemo alongside Cetuximab or no Cetuximab.
There's a silence for a while.
"Look we'll carry on with just Cetuximab for this cycle, leave it with me and I'll talk to my colleagues and we'll work something out."
And that's where we left it. So next Monday I really have no idea what direction my further treatment is going to take. I'm not blaming the medical staff for this rather the rationing of cancer treatments that the NHS foists on us. Maybe there are some good clinical reasons for the Cetuximab rules but the problem is there's no flexibility, not room for the doctor who is treating the patient to say "look I know the rules say this but for this patient treating you this way is working well so we'll do it that way." Just the dead hand of NHS management one size fits all. Computer says no.
However on the plus side staying on just Cetuximab for another cycle did allow me to go to Norwich the following day where I might have accidentally acquired a new friend at the GoGoDragons auction
Fig 45: Rawr!
