Shirley’s Story – Chronic Lymphocytic Leukemia

Below is the story of our adored mother who sadly lost her battle with Lymphoma on the 19th February 2005. Mum was a fighter, she fought for her beliefs and was always there for those who sought her advice or help. It was her fighting spirit that helped her deal with her cancer over the years and was with her till the end. Her life is an inspiration to many people and she will always be remembered and loved for the exceptional person she was. Mum was the inaugural President of the Lymphoma Support & Research Association and dedicated the last two years of her life ensuring this association was established. 

Mum's Story

I think everyone goes through life thinking it won't happen to me.  The shock of finding out that I had C.L.L. (Chronic Lymphocytic Leukaemia) in 1992 and non-Hodgkin Lymphoma in 1993 was devastating at that time.  I was very active in sport, umpiring, coaching and being a full time volunteer administrator, I thought I was pretty healthy.

I am not going to talk in depth about what I have gone through with my illness as everyone reacts differently so what has happened to me will possibly not be the same for someone else.

I have always maintained a very positive attitude and taken up new hobbies (oil painting and lapidary) which completely absorbs my attention so I can't think of anything else. Wonderful therapy.  I am also a  founding member of the Gold Coast Lymphoma Support & Research Association Inc which was founded in 2002.  The group became incorporated in February 2004 so that we can raise funds to help find a cure for Lymphoma.  This involvement has been a great help to me and I have met some wonderful people who have extraordinary attitudes to their illness. They are an inspiration to me and I come away from our meetings energised and ready to continue working for our cause.  I have also gained a great deal of satisfaction with being able to help the many people who ring to enquire about our group and to talk about their situation.

This is the most important part of my journey.  I would not have been able to cope without the help of my wonderful family – My husband, Ted, and daughters Sharon & Tracey who have been absolutely wonderful in their care of me.  They have put their lives on hold to help me in my time of need.  I love them dearly and thank God for the blessing of this loving family.  It is amazing how many friends you find you have when something like cancer strikes you.  Every phone call, every card or letter is precious when you need that extra lift.

Now back to 1992.  I was told that it would not affect me very much for about ten (10) years so I put the information on the back burner and forgot all about it leading a very active lifestyle until the year 2001. The Lymphoma became active with my having to have mabthera for six (6) treatments. This appeared to work until 2002 when I had to have stronger chemotherapy. 

2003 started off being a bad year with extensive chemo being used to stop the Lymphoma which had taken control over the CLL.  All in all I coped very well with the chemotherapy suffering some side effects which had to be dealt with.  I changed my diet dramatically with the cutting out of fat, minimal dairy products, no sugar and plenty of fruit and vegetables. I also ate only hormone free meat and fish two or three times a week. I also supplemented my diet with Inner Health, Folic Acid, Vitamin E, Adalese, Lysine, Vitamin C powder mixed in orange juice, wheatgrass, barley green and B12 injections every fortnight. Because I have a sweet tooth I have sugar free muffins and cakes which once again Sharon and Tracey come to the fore and kept my cupboard full.

I did go into remission for a short period and kept myself busy with lots of activities and a very positive attitude to life.  I enjoy every day with my family and friends and do not stress out on things, which really are not that important.

Towards the end of 2003 my Lymphoma was diagnosed as high grade and a more intensive chemotherapy regime commenced. It was at this point in time that I was given the option of having a stem cell transplant as the best course of treatment for me. Even though my chronological age is above the recommended upper limit the doctors were confident that my biological age and attitude to life would give me the strength to withstand this treatment.  

Well I had my transplant on the 17th March 2004 and apart from a couple of days where I hit rock bottom I handled it exceptionally well. I then went onto a four week treatment of MabThera and at the moment apart from some tablets I take daily and regular blood tests my life is continuing.

I don't look to the end of my life –  I am living life to the utmost and am grateful that I have been given the opportunity to get my priorities right and maybe now with my involvement with our group will help achieve a cure for Lymphoma.
Sadly, Shirley lost her battle with Lymphoma in 2005 but her legacy and her committment  to the cause of raising awareness, support and research for this cancer continues.

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