A Change Of Course

Yesterday as I collected my prescription for the coming four weeks, I was told that I would not be receiving some of my drugs, because a decision will be taken next week as to whether I will remain on the PADIMAC trial.

There are many variables influencing the decision, but the main one has to be my paraprotein level. The blood test has not been taken since the increase last week, and the test will not be done again until next Wednesday. I, and the Medically Trained People, will then have to wait until Friday for the results. The Medically Trained People will then make a decision about what treatment I will have on Monday 5 November on the afternoon of Friday 2 November. I in turn have to sit and wait. Sit tight and not think about failure.

Yesterday I said I had a big head; Housemate yesterday confirmed with me that he always knew this to be the case. I do have a big head and if you exclude some sporting activities and the D I received in my GCSE music course, I haven’t failed many things in my life. The GCSE result doesn’t really count anyway, because I did it after school as an add on. Actually, maybe I have failed in matters of the heart, job interviews (correction, fixed job interviews) and facial hair growth prevention. I am trying to think of other things, but right now, nothing comes to mind. As I cannot think of any more, it becomes gospel that I am a Success Story. Clearly, this is not reflected in my treatment to date for My Myeloma. Did nobody tell My Myeloma that I am egotistical enough to want and expect success? Stubborn arse.

I have the further complication of the worsening side effects to the Velcade. Apparently they are cumulative and thus will get worse if I continue. I have been reliably informed that this rather expensive injection ‘works for most people’. Well, my body does not like the Velcade. The current thinking from the Medically Trained People is that my illness at the weekend was due to the drug; this is something I too believe now because last night after my injection, I once again became a sloth. Once again my energy was wiped, my pins and needles were delightful, the nausea was hugging me and hypothetically, the dizziness resembled the after effects of the popper. Now, if I remain on the trial, I would manage the side effects if I knew It was helping and would make me better. I am well hard and I have a big head. I get the impression from the Medically Trained People that these side effects should not be happening and thus if I continue, my dosing will have to be altered. This does sound more sensible than me being immobile for four to five days out of every 21, however, I just want to put it out there, that I would deal with them if I had to.

So, this time next week, I will find out whether this treatment has run its course and I’ll be getting ready to move on to the next. If I am honest with myself, I am prepared for this inevitability. I am frustrated by the failure, the set back, but it is better to find out now then in nine weeks time that my treatment has failed. It means I get a nine week head start, which in turn means that I am nine weeks closer to beating this thing.

I have my consultant appointment next Bad News Wednesday and I imagine that given this impending decision, that the appointment is going to be a real hoot. I’ll look forward to that.

I must remember that there are many battles in a war. Wins and losses. Try as I might, I cannot remember all the battles of the English Civil War, which I was going to use to labour my point, but the success of the Roundheads over the Cavaliers is by the by. King Charles II still came to the throne. Sure, this might not apply to modern warfare, but it works nicely for My Myeloma. Today at least.

An update will most definitely follow.

EJB x

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