Since the 17 August, I have been counting down the imaginary days to my next volume, chapter, to a time when I can resume my normal, or realistically start my new normal. Along the way there have been setbacks, points in which I could see no end to the twilight I am stuck in. Each time, I have been able to pick myself up and continue with my treatment. I have got this far by setting myself targets and goals; things that I can enjoy after PADIMAC and then after my transplant.
In the last month, my mental planning has been working overtime. In the middle of May I have tickets to see The Book of Mormon, in June I am going to be a bridesmaid, I want to walk up to the top of Monument, I am going to go on holiday to Cornwall and I am going to go back to work full time. All these things I have been holding onto so tightly, they have been my reason to get out of bed everyday and with my transplant looming they were within my grasp. I could almost touch it and the happiness this created was indescribable. They were mine for the taking when the myeloma was asleep.
Unfortunately, nobody told My Myeloma this…
Today, I discovered that I will not be having my transplant on the 27 March. I do not know when I am going to have my transplant or indeed if I am going to have a transplant. I have been so focused on resuming my life that I had forgotten about my paraprotein. I have not felt this well since before my diagnosis and that also made me forget about my paraprotein level. I do not think that after today, I will be forgetting about my paraprotein level anytime soon. In January it had plateaued, but last week, it apparently had a windfall and jumped back up to 26. This means no transplant. This means there is no end in sight. This means I am back to where I was in October. I thought I had been progressing, but in reality I have just been treading water.
I do not know what to do. It feels like my diagnosis all over again. I am to start a whole new course of treatment, but that cannot start until at least next week because my neutrophil count is low and I have a suspected infection. My new treatment is going to last at least four months and then… Who knows? There is no end. It just goes on and on and on. I am constantly trying to come to terms with My Myeloma but every time I reconcile myself to my reality, it comes along and fucks things up some more. It’s never going to end.
I don’t deserve this. My loved ones don’t deserve this. I have been poked and prodded and had endless amounts of blood removed from my body. Hell, today, they took out a bit of my bone. I have taken drugs that have made me ill and made me lose my hair. I have done everything that I was supposed to have done and still it is not working.
There really are no words.
I have no idea how I am going to get out of bed tomorrow… but the thing is, I know I will and for the time being, that is all I can do. Get out of bed and don’t give in. I am not ready to give in. I can’t.
EJB x
