Being an old curmudgeon of 75 I really don’t like using journey unless I am travelling but actually mine started over 10 years ago.
On a visit to my GP an older locum decided for some reason to do a bone test and sent me off to get the bloods done. It transpired that my blood calcium was elevated and triggered visits to an endocrinologist and numerous test over the years for hypercalcemia (sic), hyperparathyroidism etc. After another blood test in Dec 2012 I had a letter from the endo….. saying that the tests for MM had proved positive.
Not having any idea of MM I went to Dr Google and when my wife came home she said my face was grey presumably shock. That turned to anger as I was furious they had just written this bald fact letter. I complained to my GP (she apologized but said it was cost cutting) and she referred me to a haematologist. A few months later after more bloods I was told that I didn’t have MM but had MGUS and that I would have 6 monthly checks. That was mid 2013.
Fast forward to last August, I walked into the clinic expecting to see the specialist nurse as usual. he was there plus the consultant who told me that MGUS was now MM and that I needed to have a bone marrow biopsy. There followed monthly testing until earlier this year when I walked into the room and there were too many people in there and I thought now this looks serious.
Told that I now needed to start treatment I was offered the chance to participate in a trail drug. I agreed and there followed even more tests to see if the drug company thought I was suitable which caused more tests, heart monitoring, full body scan and another bone marrow aspiration. The drug company turned me down as ave Atrial Fibrulation and the new drug had side effects on the heart. It also built in another delay to treatment. Not that that bothered me much after all I felt fine and had no effects such as bone pain. I was also beginning to feel a fraud because I look very well and am as active as can be with AF(it makes me breathless.
So here we are this morning, my first post on the forum having has my first Velcade injection yesterday. two doses of steroids (20 x 2mg tablets a dose) and thalidomide last night, sitting in a sunlit room and still feeling fine. Long may it continue.
