I was diagnosed by my GP after months of back pain and three visits to another GP. Huge shock – thought I had muscle strains caused by gardening. Once spotted the NHS moved very quickly with CT and MRI scans and loads of blood tests. I was quickly put on treatment – Lenolidomide, the dreaded Dexamethadone, and Daratumumab. All going well and I have just 3 weeks of this remaining before the prep for the stem cell transplant and said transplant likely in May. Physically I’ve been fine in the circs (only side effects from the steroids – Thursdays are a wipeout) but mentally it’s been up and down, having to stop work which I loved, being a ‘sick’ person after no illness in my life, the need to avoid chance of infection, the challenge of exercise (I have always been very active – cycling, swimming, Pilates etc) and a long haul of treatment.
I’ve discovered that I respond badly to lack of information – 4 weeks between consultant appointments leaves me in limbo – but when I do see them I get what I need to know about the process and timing and feel more optimistic. I also have two good friends who have been through this recently and taking to them has been brilliant – informative and positive. I no longer respond well to friends who text me with ‘how are you doing’!!
This forum is great. I find it hard to get my head round this cancer. I’ve dipped in and out of all the information as and when I need it which works for me.
