It’s helping me to write this all down whilst it’s still quite fresh. I am discharged from hospital on the Friday evening. I am set up with 3 appointments in the acute oncology service - Saturday, Sunday, Monday morning, for IV steroids, daily blood tests, potentially IV fluids. I have a follow up face to face booked with my consultant or her team for later on Monday morning. I have a bag of prednisone, thyroxine, blood pressure tablets (yes that had spiked too), stomach protectors. The plan is to return me from IV steroid to 60mg per day prednisole as of Tuesday.
I can’t drive because of the high dose steroids, so lovely husband becomes my daily driver. Fortunately AOS doesn’t dispense cytotoxic drugs, so partners are allowed on ward. It becomes a minimum 2 hour stay each day to get through the pre-treatment health checks, get my port docked (I am not allowed to go home with it docked), receive the actual treatment, be flushed and disconnected. The mornings pass chatting with others who are there for blood transfusions and similar. Creatinine has reduced from 350 to 250, but isn’t really changing. I am still awfully thirsty. On the 3rd morning, the registrar decides to prescribe a bag of saline to be dripped in over 2 hours. I am unclear whether this is because of a new worry, or whether they are just filling in time to my later appointment.
Some time through this, a young man arrives with a wheelchair telling me he is about to take me for an urgent MRI. I am on the ball here, I know my port has been docked with a metal needle, and I will have to get it taken out to have the MRI. I ask the nurse to do this, she is reluctant as she has also been told to get the fluids in. I get her to contact the registrar who ordered both things. I am unclear whether they are wanting to MRI my kidneys, or whether they have decided to see how the mets in my liver are doing. It turns out it is the latter. Hardly today’s priority but the registrar had decided to make productive use of my time. I think she had forgotten I have a portacath. So the MRI is cancelled.
I have written about the 1 hour meeting that I then had with her on one of my other posts. As well as getting me lots of information, we planned 3 follow up blood tests and a further meeting for the following Monday. A decision to be taken on the Friday before the Monday as to whether I could start the steroid de escalation from 60 - 50. Further drops in creatinine allowed that to happen, so that brings me up to date. It’s now a case of taking it day by day to see what happens. I continue to monitor my in/outs at home. I have bought a blood glucose monitor and am testing regularly. I am monitoring blood pressure and temperature, and taking my drugs.
I am no longer demonstrating the signs and symptoms of being critical but there is no way of knowing whether this is just because of the steroids. It’s going to be a few weeks before I know. Eventually I will need to find where the cancer is at and what my options are. My research of adverse event protocols says there is a still a possibility of rechallenging with pembro if a whole set of criteria are met, with other supporting steps in place. I am not sure at this stage whether I would want to go for this grand version of Russian roulette. We don’t have enough data yet. I do need to make sure we understand deadlines for decisions, gather the facts in time, and reach an informed decision. Rather than just timing out. In tomorrow’s meeting I will make sure that timeline is clear. Informed, articulate patients must be either a joy to work with or a challenging problem. If I find out something new at one meeting I will have done a lot of research on it before the next. I always try to stay on the right side of being calm and polite, but I recognise I probably fall in both categories at once. The joys of dealing with someone who was a very senior executive who had to make priority calls and judgements based on incomplete information, and who happens to be a mathematician by background.
