The Fight for Treatment

December — Arranging treatment is a battle

04/12/13 — Second appt with Darius Mirza who agrees that a resection is possible having now seen original Sheffield MRI scans and is happy to do this pending clear laparoscopy, maybe very late December but likely early Jan. It’ll be good to have this done in Brum obviously.

05/12/13 — Emma Ramsey, the OM nurse at So’ton, calls to say the laparoscopy is clear showing no millary spread on liver. They suggest resection having had their MDT and we explain our meetings with Darius Mirza. It suits them for us to be based in Birmingham while they manage the case overall. A useful outcome because with more than one hospital involved we feared ‘falling between the cracks’ from an admin perspective.

12/12/13 — Appt in QE at 9am as DM brings me over to the NHS. I see someone else who seems like they’re trying to bump me off a waiting list. I’m told that it might be better to go to So’ton, then that resection isn’t necessarily best for OM, then that there’s nothing until late January! I respond indicating that the significant research we’ve done suggest otherwise and fight every point. By chance DM walks by the office of this person (the door happens to be open) and he pops in and chats and I get the 6th Jan (the other person had missed the existing entry for me in the diary!). I pursue the argument that resection is best and the other consultant asks me to produce peer reviewed papers…it’s all getting utterly surreal but I happen to be carrying the abstract to a relevant paper which stops him. Anyway that was quite a concern and made me realise the disparity in medical opinion for a rare cancer.

12/12/13 — The same day I have an appt in So’ton and drive straight there after the QE morning stint. Neil Pearce sees me after a long delay at surgery and is keen for resection at QE (he speaks highly of DM and is a personal friend) and then suggests having Delcath when I’m recovered as a ‘belt and braces’ approach to ridding the liver of as many rogue melanoma cells as possible. I agree to this and if I’m recovered from resection by the end of March it might be possible to get something before the year end (which makes a difference to their resources). NP suggest that after Delcath treatments (probably 2 or 3) I could then look to systemics. He also suggest building a ‘war chest’ to permit expensive treatments further down the line in case I need to go to The States, in 3 years say, when something very good might come along — the idea is to keep me going as long as we can and treat it as a chronic condition. It is very heartening to speak to him.

16/12/13 — Whilst visiting my GP Gen calls me from home to say the pre-op for my Jan 6th operation is set for Jan 10th?! What?! This is crazy, and with the help of the GP’s secretary we call the relevant dept and get the name of someone who seems quite efficient. With their help we pin down the 6th Jan for resection and the pre-op is arranged for 20/12/13.

19/12/13 — Despite the pre-op confusion appearing to be over we now struggle with conflicting letters from the QE which appear to contradict what we’d sorted out. An admin disaster and after some more phone calls we resolve the 20/12 as the pre-op date.

Updated: May 14, 2014 — 2:41 pm
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