I was diagnosed January 2001 at Kingston Hospital, before later moving to Sutton Marsden. I will be 71 this year, so coming to 18 years of Watch and Wait.
Initial thoughts consisted of a lot of fear, as I was a single mum to two young teens and was sole provider. The doctor at Kingston did say it was a “benign” form, so that helped a bit. I remember asking her if I was sitting on a time bomb, and she just laughed!
So, I had about six months without treatment, then pills, then Campath injections (three times a week for four months), then other drugs.
I guess I am proud that even though I worry more about my children losing their mum, I carried on working. I eventually lost my job due to constant “lonely” visits to Sutton, but always tried to be upbeat with those around me, and still do. I managed to see my daughter married, have my first grandchild, and hopefully another one on the way. I also went on the Victoria Derbyshire show to campaign about the cost of parking at hospitals.
Advice? Don’t read up too much. I remember my daughter googling excitedly, “mum you can live at least 10 years”, but how those years passed so fast. Anyone being told they have cancer is a scary thing; I now try and chat with people in reception who have their first visits, very nervous, and tell them they are in the best place at Sutton. I feel particularly bad when I see teens and 20-30-year-olds who have not started their lives.