sake’
Jean Evans
I don’t stand to gain anything by writing my story. Well, maybe I do! I want to know that Professor Werner Bezwoda will continue to be my doctor and that his life’s dedication to the treatment of cancer is not wasted.
When I was 34-years old, with a toddler of just two and a baby of nine months, I went to my gynaecologist with a breast lump. I did not really understand that it was a dangerous lump at the time. I had a check-up and was told that the lump was due to the mini Pill and that I should have a loop fitted. I stopped taking the Pill and waited in anticipation for the lump to disappear within six weeks as the doctor promised.
When it got bigger, almost twice the size when five weeks had passed, I went for a second opinion. The next day I had a full mastectomy and discovered that the lump was over 5cm long and that the cancer had infected most of my lymph nodes.
Shock and horror! My family was devastated and I was numb. I still remember my husband coming to see me in hospital, pushing my two little girls in the pram. A friend of a friend told my mother about a wonderful doctor at the Johannesburg hospital in the oncology department. As I did not know anything at all about cancer, and due to the initially incorrect diagnosis of my original problem, I decided to have several opinions about my future and treatment.
I look back on the wisdom of that decision (which was made in very emotional circumstances) and am amazed at my brilliance. My mother drove me to Johannesburg hospital and I sat on those orange plastic seats with at least 50 other cancer patients for three hours.
I met with Bezwoda and he outlined his prognosis and the type of treatment he thought I should have. He was kind and gentle, to the point of being detached, but what he said made me feel confident in my ability to recover. Due to my family history, age, otherwise good health and surgery, the minimum type of treatment, which was six months of adjunctive chemotherapy, was suggested.
Like all chemotherapy, it was not great. Most of my hair fell out; I got fat from the cortisone and suffered with nausea. I was scared, so scared that I decided that I would take all the treatment I needed. Goal-setting became the name of the game. Whether it was getting through yet more tests, not vomiting in the car park of the hospital or having my chemotherapy, I worked towards goals.
The six months of treatment stretched into eight months but we got through it as a family. My husband and parents helped me and my friends helped my babies.
I finished my treatment in July 1991. In April 1992 a new lump grew at the site of the old surgery. This made my situation a whole lot more serious. The previous tablets and chemotherapy had not worked. Now I had had a re-occurrence, which, in my mind, signalled the end. Bezwoda explained that I had a very aggressive cancer and that a much more serious form of treatment was needed. He gave me two alternatives. The first was conventional treatment for another six to eight months with a much stronger chemotherapy. The second was new, different and part of a clinical trail. The possibility that the only way I was going to beat the cancer was by entering into a clinical trial made me realise that I had a problem.
The conventional treatment would mean six months of horror all over again, only with more vomiting, no hair and long torturous nights thinking about whether the lump was shrinking. Would this next course of treatment be successful? I would also have the side effects for a much longer period.
The new treatment would mean two months of conventional treatment to see if the lump responded in any way and then a “stem cell rescue” with high-dose chemotherapy.
I chose the high-dose chemotherapy. Bezwoda and a Dr Dansey (who emigrated to the United States shortly afterwards) explained the procedure and it all went very well. I was sick, make no mistake about that. I went to stay with my parents who nursed me for two weeks in a very sterile environment. My husband came to see me every day and took me to see Bezwoda on a daily basis. My blood levels were checked and I was treated with the utmost kindness and professionalism. I could always say to people who criticised Johannesburg hospital that I knew excellent doctors and a department that was world-class.
That was five-and-a-half years ago. I have seen my two girls grow up and start school. There were days when that was all I wanted in life – to live long enough for the girls to get to school and to remember who I was.
I am fit and healthy. I would do the same again. I really believe that without the stem cell rescue I would not have seen in the new millennium. The stem cell rescue that I had and that Bezwoda did with breast cancer patients is not the same as a bone marrow transplant that you talk about in your article.
I was lucky to meet Bezwoda and honoured to be included in his study on the effectiveness of high-dose chemotherapy in South Africa. He is a brilliant and dedicated man. He believes in what he does and has extended the precious lives of so many people who went to Johannesburg hospital for all those years.
He may have made a mistake with his control group, but I am very glad he never made a mistake with my life.
I only have one problem now. His mistake will make such a good read, and the pressure created on him will be so great, that I will lose my doctor and all my hope of a long life with it.
What will I do if my cancer comes back and he is not there to save my life again? What will I do if the medical aids have withdrawn funding for further research and treatment? By then, all the sensationalism will be over and everybody will go on with his or her life. Everybody, that is, except the cancer patients who need doctors who are prepared to try and develop new treatments.
Bezwoda did not make a mistake with anybody’s life. He was not negligent. He is not a dishonest doctor conducting undisclosed trials. Make no mistake, the patients who are on the treatments go in with their eyes open and with a lot of hope. Bezwoda only tried his best for the sake of his patients.