Cancer Alliance Stigma Survey

Cancer stigma is a great problem in South Africa, it touches all groups, ages and genders and impacts cancer patients daily.

With our current survey we aim to gain more information and insight into the role of cancer stigma in our communities.

- Cancer Alliance Stigma Survey -

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Shaun Watts | Chronic Myeloid Leukaemia

I was diagnosed with CML (Chronic Myeloid Leukaemia) in January 1996 at the age of 36. 1996 was to be a year of change for us. In January 1996 , we returned home to Johannesburg, South Africa after a wonderful and relaxing 6 week vacation in New Zealand. Earlier the previous year, we had successfully...

I was diagnosed with CML (Chronic Myeloid Leukaemia) in January 1996 at the age of 36.

1996 was to be a year of change for us. In January 1996 , we returned home to Johannesburg, South Africa after a wonderful and relaxing 6 week vacation in New Zealand. Earlier the previous year, we had successfully applied to immigrate to New Zealand and it was required that we visit New Zealand to secure our residence visa’s. We toured all over the North Island in a mobile camper, loved what we saw and experienced and decided to give ourselves a year to wind up our lives in South Africa, pack up our bags and immigrate to ‘greener’ pastures. By midday on the first day back at work, I felt totally exhausted so I made an appointment to see our family doctor so that he could prescribe a vitamin supplement to help boost my energy levels.

During the routine examination, the doctor felt that my spleen was rather enlarged and ordered some blood tests and a sonar scan of the spleen. The following day, I went to his consulting rooms to hear the results and get my ‘vitamin prescription’. He told us that tests revealed that there were some abnormalities in my blood counts and confirmed that the spleen was abnormally large and felt that I should see a specialist doctor at the hospital for further analysis. We still were not too concerned so whilst my wife went to watch our sons at cricket practice, I admitted myself into the hospital to see the specialist who then confirmed that I had CML. I did not even really know what Leukaemia was but suspected that it was some form of cancer and that I did not have much time to live. The diagnoses was obviously very upsetting but, to be honest, I felt more upset at the thought of leaving my wife and two young sons, aged 11 and 7. I felt so disappointed and guilty that I was about to die and I would not even be there to see my two sons boys get through their schooling. In tears of frustration, I phoned my wife and told her my news – wow, what an end to cricket practice and so began our year of change. We had no choice but to give up our dreams of moving to New Zealand and to now focus on getting better. Dying was just not an option and from day one, I decided that I would not give up and my only thoughts would be positive no matter what I had to endure.

I was immediately admitted to Morningside Clinic and began treatment, initially Hydroxurea and a few months later, every second day, injections of Interferon. I suffered awful side effects with the Interferon. A year after the initial diagnosis, it was decided that I needed to consider a Bone Marrow Transplant (BMT) so we started searching for related donors. Neither my sister’s nor brother’s tissue matched nor were we able to find an unrelated match from the very small marrow donor pool we could access in South Africa at the time. We decided to move to Cape Town and have an autologous transplant, (using my own stem cells) at Wynberg Hospital ‘Bone Marrow Unit’.

The two day stem cell ‘harvest procedure’ was successful after a course of chemotherapy and radiation, the transplant date was scheduled for 31 July 1997. The procedure is very much like a blood transfusion. It did take longer than average before we were able to detect white blood cells but after they began to show, it only took about a week before I was allowed to go home. Six months post transplant, tests revealed that there was still a presence of the Ph+ chromosome and we had to accept that the BMT had failed. I had to once again take Interferon weekly and had to endure the awful side effects. I deservedly earned the nick name ‘grumpy’ from my children and friends (especially on Sundays, the day after I had my Interferon jab). My counts gradually increased to 86% and toward the middle of 2000, I heard about very encouraging results from initial clinical trials in USA of a new ‘miracle’ drug STI-571. After a lot of investigating, we eventually managed to have the clinical trials extended to South Africa and on 14th February 2001, I began clinical trials – Patient 001. Within 6 months my counts had dropped to below 10% and within a year my count was zero. The drug STI-571, (Gleevec) was approved and registered by the FDA.

It has been 10 years since the initial diagnosis and 6 years since starting Gleevec. My eldest son, Ryan, is in 2nd year studying at Cape Town University and the youngest, Justin, is in his senior years at high school. My business is steadily expanding and I continue to lead a full life. I am still taking 400mg Gleevec every morning and have little or no side effects other than a bit of water retention, occasionally muscle cramps and some weight gain, the latter probably more to the good living than the drug. I believe that my strong positive attitude together with my faith and my quest to find out as much as possible about the disease and treatments helped equip me to fight Leukaemia.

My sincere thanks and gratitude go to all the doctors and wonderful nurses who have treated me for the past decade, Dr. Daniel Vorobiof and his nursing staff at Sandton Oncology, Dr Peter Jacobs, Sister Lucille Wood and her dedicated nursing staff at Constantiaberg Medi-Clinic, Novartis and GIPAP for Gleevec and all the support. I am eternally grateful to my loving wife Lorna – my angel and my strength, who has loved and supported me and had to endure so much and I am so proud of my two sons, Ryan and Justin who have always been my motivation. We are forever thankful to my parents, family and all our friends who have always been there for us.

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