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Joan's story Joan's account of her diagnosis with non-Hodgkin's lymphoma and how she found the best possible treatment.
Toward the end of 1997, after an enjoyable trip to the UK, I suddenly started feeling extraordinarily tired and I had difficulty walking from one end of the house to the other without puffing and panting. As I wasn’t used to being ill, I thought it would go away, but in the end I was forced to go to my local General Practitioner (doctor). She sent me for a CT scan, and the next time I saw her she put her hand over mine and said, ‘’I’m terribly sorry. You’ve got non-Hodgkin’s lymphoma." She had to explain to me that it is cancer of the lymphatic system. I was referred to a recommended oncologist and started the usual course of chemotherapy. After the first treatment I lost all my hair and had to purchase a wig (which some of my friends thought was an improvement). I didn’t find out until recently that I was at stage 4. I had the usual side effects and had to resign from some of my activities because my health was too unreliable at the time. The chemo worked very well on the aggressive cancer and I was left with a low grade non-Hodgkin’s lymphoma, which I was told I could live with. About September 1998 I heard a talk by Joel Nathan on ABC radio. He was talking about his journey of survival with hairy cell leukemia and the subsequent book he had written about his experiences, called, "What to do when they say ‘It’s cancer’". I ordered the book from the ABC shop. It took weeks to arrive, but eventually it came in. I found it very encouraging and interesting, and when I mentioned it to my oncologist, he said he had a copy on order. What was especially interesting and exciting for me was that on page 9 he had written about the drug 2-cda
By this time my cancer was recurring and I was on chemo tablets. I wrote to Joel Nathan and his reply was very encouraging. Then I heard he would be speaking at a local cancer support group meeting, so I made a point of being there to meet him. I told him I was going to ask my oncologist to put me on 2-cda, but he told me there was something more specific for non-Hodgkin’s lymphoma, which was ‘Rituxan.’ On my next visit to my oncologist, I asked if I could go on Rituxan, and he said, "why not?" He booked me into Monash Medical Centre (Melbourne) and I attended once a week for four weeks to be given "Mabthera" (as it is called in Australia) intravenously. The result has been magical. The swollen lymph nodes in my neck have returned to normal and I am feeling pretty good and looking forward to the future. I am glad I heard the talk by Joel Nathan and obtained his excellent book and the encouragement he and my oncologist have given me. My experience has taught me and my friends not to just accept diagnosis and treatment but to find out for yourself what the latest and most effective treatment is for your particular problem, and to have an interested and co-operative oncologist. |
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