23/02/20

Looking back at all this, it's now clear to me that it began with the upper back pain that sent me to my GP Dr.Ku back in the summer of 2018. I would come down for breakfast in a good deal of pain and have to lie flat on the floor for a while or sit with a rolled-up cushion just below my shoulder blades to "straighten my back out" before it returned to something like normal. I've been dealing with low back pain for over forty years so the natural assumption was that this was more of the same, although I had never had it before up in thoracic territory. 

The first thing Dr.Ku said was "might be bone cancer, we'd better run some tests".  They showed slightly elevated paraproteins and sent me to my first haematologist at Broomfield who diagnosed the precursor condition MGUS. He also ordered a "skeletal survey" CT scan, which came up all clear.

At that point I knew I had a slightly increased risk of myeloma, but didn't expect any developments for years to come.

The upper back pain eventually went away, only to be replaced before long by sharp pains that seemed to be in my right shoulder blade.  I remember getting Sue to rub Ibuprofen gel into the area (I can't reach it myself because of my broken left shoulder) which of course was entirely futile - I now know I have myeloma lesions in the rib just level with the shoulder blade as well as others in the thoracic vertebrae to explain that upper back problem. Well, the "shoulder blade pain" went away after a few weeks and I thought nothing more about it, although I now believe that both were "pathological fractures" due to myeloma osteolytic lesions, and Prof.Gribben agreed that was the likeliest explanation. The only question is why they didn't show up on that early CT scan. Well, they had probably healed up as much as they were ever going to by then, and no imaging technique is perfect enough to "see" everything.

Then came the left hip problem with its severe impact on my walking (not to mention my e-cycling), and the x-rays of that 6cm lesion in the left hip, combined with paraprotein levels up into the low 50s, led to the Myeloma diagnosis in September 2019.

If all that is right, then I moved from MGUS to Myeloma effectively without significant delay and I could have had the Myeloma diagnosis a year earlier than I did. Would it have made much difference to where I am now if I had recognised those two incidents as probable myeloma rather than something else? Probably not a lot. And when I compare my story to all those I read of people with far worse bone damage before their GPs ever even consider myeloma, my diagnosis was as early as one could reasonably expect.