Hi, I’ll start the new round of experiences of diagnosis.
In March 2018 I went to donate blood. I remember watching the test sample sinking oh so slowly in the test tube, it seemed very odd. I was told that I was anaemic and was given a printed sheet to take to my GP. A week or so later the GP said I’d got hypothyroidism, vitamin B12 deficiency, possible coeliac disease, iron deficiency, high cholesterol. My results were odd, she wanted me to have another test, electrophoresis, “although she was sure I’d hear nothing more about this”. I searched the internet to see what such a test was for and found it was looking for markers of a cancer I’d never heard of, multiple myeloma. An incurable cancer, with a prognosis of just a few years. I felt pretty well, I’d been a bit lazy, and caring for elderly parents with dementia had been stressful, but I certainly wasn’t ill. When I had a phone call from the GP surgery two days later asking me to go in, on a Friday afternoon, I immediately knew what I’d got. I had read enough to ask the GP specific questions for specific results to know there was little possibility I didn’t have myeloma, and active myeloma at that. I asked the GP about life expectancy given I felt so well, and was told that he’d known people who’d gone from being well to bring dead in 3 months, which in hindsight I think he said as a way of saying that we never know how long we’ll live, but I took as meaning I could be dead in 3 months. My husband was away all weekend and I was paralyzed with shock, trying to plan out what I needed to sort out in my final 3 months.
I was seen by a haematologist within days and had a series of scans, a bone marrow biopsy etc before my formal diagnosis six weeks later. I was totally prepared for being told that I had multiple myeloma, but had I not have been, I would have been made aware by the reverence and concern being shown by the nursing staff before I actually got into the consultation! The only thing that shocked me about my diagnosis was that the consultant said " I’m sorry I can’t prescribe lenalidomide", which at that stage I’d never heard of, although I must have sounded quite informed. Needless to say, that led to further searches about myeloma treatments and then to have a second opinion with someone who could prescribe lenalidomide, (although I had to co-pay to get it). Two years later, I am feeling just as well as I did before diagnosis, I’ve had 5 rounds of triple therapy, a stem cell transplant, surgery to remove a thyroid tumor and I’ve had to rely on India to obtain the lenalidomide maintenance that currently keeps me in remission.
Myeloma is an individual disease, mine is atypical in that I have no known bone lesions and so far haven’t had infections. I won’t push my luck though, like all of us I’m currently being ‘shielded’ trying to avoid the pandemic.