Before treatment started I underwent regular blood tests, CT and PET scans and a bone marrow biopsy so the medical team knew exactly how my non-Hodgkin lymphoma was progressing, where it was located and whether I was fit enough to undergo treatment. I was shocked to see how much cancer there was in my body when I got the results of the PET scan. For me, the worst part of the whole experience was the bone marrow biopsy. The information booklet the hospital sent me stated ‘the procedure can be uncomfortable’-massive understatement! To me it felt like the doctor was trying to jimmy open a stuck window, and as he didn’t get what he wanted the first time he had to have a second go. For anyone reading this who is about to undergo one of these processes, although it is not a particularly pleasant experience, the thing to hear in mind is that it needs to be done, doesn’t last very long and is really important to determine the spread of the cancer and the type of treatment needed. Once this was out of the way, for me everything else was comparative plain sailing. As the bone marrow biopsy took place adjacent to the hospital’s chemotherapy suite, this was the first time I saw patients undergoing chemotherapy, some of whom obviously had no hair. This had a big impact on me as I realised that in a few weeks I would be one of them. Everything became real at this point as I had a glimpse of what lay in front of me and I felt quite emotional.
For all the pre-treatment processes, the NHS sent out useful preparatory information. At initial diagnosis I was given a book about low grade non-Hodgkin lymphoma (produced by Lymphoma Action) which helped me understand what I have and what can be done to make it better. When I read the main symptoms-extreme tiredness, unexplained weight loss, drenching sweats (especially at night), itching, abdominal pain, persistent cough, I almost shouted YES, I have all of these! It was a real relief to finally know that all the discomfort I had been experiencing was caused by something concrete and explainable.
Before treatment began I signed a Patient Agreement, the intended benefits being ‘Disease control-the aim is not to cure but to control the disease. The aim is to improve both quality of life and survival’. This was a further reality check about my situation and future prospects, although it had already been well explained to me that my cancer would not be cured by the treatment but I should hope for an extended period of remission and quality, symptom free life. At this point I requested a sick note to cover my absence from work which, bizarrely, my consultant was not able to write for me so I had to go to my GP.
My full diagnosis was low grade non-Hodgkin lymphoma, stage 4B.
