Sandra’s Watch and Wait story

Sandra has been living with CLL for almost 20 years,

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.

 

What is campaigning and advocacy?

As a charity we are actively involved in campaigning on behalf of patients and their carers, which we feel is an important part of the work that we do. We are passionate about doing everything we can to improve the experience of patients throughout their cancer journey.

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