We are international

Jane Simpson

Bridgnorth, Shropshire, UK; barbie@simpsonj15.fsnet.co.uk

1962 / Class of 1999 / Type: Kappa Light-chain / Last Update: 6/00

I grew up in the suburbs of a large town called Wolverhampton, but I’m currently living in a small market town. I had a pretty privileged upbringing, going to Public (in the U.S., this is “private”) school for most of my academic life. My father had a good job and we were very comfortable. I suffered with the usual childhood illnesses but had no significant illness that could have triggered MM. Up until the diagnosis, I had been healthy and active looking after my 3-year-old daughter as I was a single parent.

This time last year (June, 1999) I was experiencing severe discomfort in my back and hip which my GP thought was sciatica. However, after several visits back and forth he decided to send me for an X-ray. This showed up a problem with my bones and although I had no idea of what was lurking they gave me the impression that something was seriously wrong. After a visit to 2 other specialists it was decided to admit me to Oswestry Orthopaedic Hospital for a bone marrow biopsy. I was also informed that my left femur would need to be pinned as it was in a very bad way. The biopsy confirmed MM, and after the surgery on my leg I was transferred to Shrewsbury Royal Hospital under the guidance of haematologist - Dr. Nigel O'Connor. I then started the first of 4 cycles of VAD plus Prednisone.

In November 1999 I went to the Q.E. Hospital in Birmingham for a stem cell transplant.  I was also randomised and selected for a 2nd transplant to be performed 3 months later. I sailed through the first transplant and was out of hospital in just over 2 weeks with few side effects.

The second transplant however, hit much harder, and I had problems with very low blood pressure and terrible sickness and diarrhoea.  Nonetheless, I was still out of hospital in 3 weeks but had lost a lot of weight and it took me much longer to recover.

My marrow involvement was originally 68% and now is less than 2%, according to the last biopsy done earlier this month. I take Fosamax daily and Zoton as well as hormone-replacement therapy as I have gone into early menopause. Other than being very stiff in a morning and after sitting for any length of time, I feel very well and lead a normal life with my now 4-year-old. We go swimming twice a week and we socialise a lot with friends.

I am determined to last as long as I can for my daughter’s sake and hopefully in the meantime they will come up with a cure or at least be able to keep the disease at bay.

My advice to people with this disease is to keep positive and surround yourself with positive people.  Also pack as much into your life as possible and treat every day as if it's your last!

Good luck and God Bless,

Jane Simpson

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