Excerpt from the last page of Prof's letter, which follows details of every treatment I have had since diagnosis. This is what I am to present if I catch COVID19, in the (possibly still vain) hope that they will treat me and not write me off as a medical no-hoper.
'Scotty is a 51 year old patient of mine with myeloma. She was diagnosed in September 2008, 12 years ago, and she has no morbidity whatsoever relating to her myeloma and is in a very deep remission. She is currently on Daratumumab/Velcade as maintenance treatment. I thought this information might be helpful for you so that you can factor in if you are triaging her for possible respiratory support, that the myeloma shouldn’t influence your decision. From the myeloma point of view, she is already 12 years from diagnosis and we would expect, on the current treatment, a very significant chance of many years of survival to come.'
Fucking hell, how real is this?
Today also brings the horrendous Catch-22 decision of whether to continue with Velcade treatment (my second cancer drug), which Prof is recommending doing. He has taken me off Dara for now as it is too risky to continue on an immunotherapy drug given the circumstances.
But Velcade requires 1 visit to Parkside (now the main hospital rather than CCL), three times a month. So 9 times in the next 12 weeks and probably more visits after that, as I doubt the staying home restrictions will be lifted by then for people like me. I was hoping 1 person in a mask could come and jab me in my car in the car park to reduce the risk, but they are currently saying they still need to run bloods (as is only sensible but not helpful now), check blood pressure, weigh me etc before each and every treatment. Which has to happen in a room, on the ward, on the 3rd floor.
So: to go to Parkside to get life-giving drugs – but run the far-more-significant-than-I-would-like risk, on ten to maybe twenty occasions, of catching COVID from a surface, a lift button, a door handle, a person, a blood pressure machine, a teacup, a tap lever, anything contaminated…
Or: To hold off all treatment for now, and risk losing my remission and the disease becoming active again.
What a fucking choice. I've bounced it to Prof for his view and then it will probably come down to me having to make the call.
And it's not just right now to decide about – what if Parkside becomes an active virus treatment centre as per the government agreement? Which is obviously overall a very good thing but it won't be possible for anyone like me to go there for many, many months if the place is rife with it.
Shit, didn't see this one coming, and of course there is no easy answer to the questions.
Will see what Prof comes back with. Who is 82 himself and therefore hopefully staying home too..
Hmmmm. x