Boney Joney

There have been few moments since I was diagnosed for me to celebrate. Diagnosis, fractures, chemotherapy, hair loss, nausea and fatigue have been my rewards thus far. Sure, I have celebrated when my paraprotein’s gone down, but with hindsight, my previous celebrations have been premature. I celebrated after the first cycle because I got a 35% reduction, but then the reductions slowed and the level plateaued. I got to have Christmas with my family because it went down by three, but the end result still means that I have to have a stem cell transplant, just three months later. In the long term, this may be to my benefit, but we do not know that yet, so I am keeping those celebratory flags in the loft for now.

On Monday however, there was need for a balloon or two, or maybe a slice of cake, for cake has more purpose than a celebratory balloon. It smells better. Getting good news is rare, so I had a day of relishing in it.

On Monday, I got my MRI results. Not the full results, I am still to do that, but I got the headlines. The hardest thing I find about living with myeloma is that in addition to the disease itself, I have the pain. Correction, ‘chronic pain’. Must not forget the Chronic Pain; it’s been my friend these eight months at least. I always think that the disease would be easier to manage if I could bend over or do a jig, but alas, myeloma does not give you the option of one or the other. I get branded by cancer and I get pain. Silly bones. Silly lesions. My Myeloma.

It’s not all doom and gloom though, for that is not how I roll. I am Glass Half Full.*

On Monday, I found out that my bones have not got any worse since my first scan in AugustYay, party. In fact, my bones have improved. Yay. PARTY. The treatment I have been on, as well as giving me a partial response has started to mend my bones. I do not know the full results, but I imagine, that there is still a long way to go, and I shall be in a relationship with morphine for a while longer. But if it stays the same, I can manage it. I have got this far.

As annoying as the bones are, knowing that they are improving offers me an immeasurable amount of relief. I live in a constant state of paranoia that every turn of the head, every click of my neck, every digging pain in my lower back, is a step closer to paralysis or a sign that It is getting worse and the Medically Trained People have missed something. Knowing it is getting better, at whatever speed it is getting better, makes me feel better.

My results buy me some peace of mind.

My results, as silly as it sounds, lets me focus more clearly on the next hurdle, on my transplant.

Thank swear words for that.


* Excludes drug enhanced mood swings, premenstrual tension, tiredness and hunger.