There are different types of Myeloma, and different ways of measuring the Myeloma cells. For Dad, they use a measure of “paraproteins”. This is a protein created by the Myeloma and the concentration of the protein gives an indication of the cancer.
When he was diagnosed, Dads paraprotein was at 69. At its lowest point during treatment, it was around 5 – we celebrated Dad achieving a “Very Good Partial Remission”. I secretly wept because he didn’t get a full remission. Secretly weeping has become a new past-time.
The paraprotein is currently around 15. Maintenance treatment has stopped working so has been stopped and it is likely that new treatment will start when the pesky paraproteins are around 45, unless the cancer presents itself in other ways, like new tumours or bone damage.
It’s difficult to come to terms with treatment being stopped because the cancer is getting worse. Surely, this is when they should be hitting the cancer with everything they’ve got?!
But on the other hand, I’m happy that Dad has an opportunity to be drug free. No chemo making him tired and poorly. No having to inject himself twice a week with GCSF to stop his essential little white blood cells from getting dangerously low and leaving him with no immune system. Ironically, they protect his immune system, but make him nauseous and often leave him bed-ridden!
When they officially gave us Dad’s diagnosis, I think there were around 6 or 7 doctors or consultants around the bed in the ward, with the curtain pulled round us all for “privacy”!
We both cried when they confirmed the worst and they handed us a mountain of leaflets and factsheets and paperwork to sign.
When asked if he had any questions, Dad struggled to get his words out and I assumed that he wanted to know the answer to the burning question when someone is told they have incurable cancer - “how long”. That wasn’t his question at all, and that is a question he has chosen never to ask.
He wanted to know if he would walk again. Dad’s spine was so damaged by the cancer that he was in constant pain and unable to walk during those early weeks in hospital. The consultant confirmed that in his view, Dad would walk again, with extensive radiotherapy. He brightened at this news and I learned something about Dad that day that has stuck with me ever since.
He does not measure his life in time, he measures it in quality. He measures it in achieving small milestones. Walking again. Coming home. Sitting in a restaurant for breakfast. Riding a bike. Driving again. He is my hero.
