In September 2017 my father passed away. A few days later I went to my GP about a lump at the top of my hip but I didn’t get an appointment for a biopsy until November. The results of the biopsy showed that I had chronic lymphocytic leukaemia (CLL). The doctors told me that my condition was chronic but controllable. A CT scan showed that it was at stage IV as it was above and below my diaphragm.
The doctors at the hospital initially told me they would monitor my condition and that they would ‘watch and wait’. But in 2018 I had a biopsy on another lump and after it had been removed another one appeared. I went on holiday to Cornwall and found it increasingly difficult to walk around and became quite poorly.
When I came home I saw a different doctor at my three month check-up who requested another scan and biopsy. Four weeks later I returned to the hospital and saw my original doctor who said my condition had transformed to diffuse large B-cell lymphoma. The doctor prescribed six to eight sessions R-CHOP chemotherapy. The chemotherapy affected my immune system and I developed sepsis and was treated in an isolation room in hospital for four days where I was reverse barrier nursed.
By the start of 2019 I hit a real low point. The doctors said the chemotherapy wasn’t working and it was stopped after three sessions. The doctors discussed stronger chemotherapy and spinal injections. I then received an appointment at another hospital and met a new consultant who wanted to do more blood tests and a biopsy to look at my chromosomes. The results showed that I had the TP53 gene mutation which stops chemotherapy working as effectively. The cancer had not mutated to a high grade but had become more aggressive.
The new consultant at the BRI started me on a course of three tablets a day and within a fortnight they started to work and most of the external swellings I had had gone. The new tablets make me feel very tired and cause similar but lesser side-effects to the chemotherapy but I am starting to feel stronger.
After my diagnosis I went to a talk which had been organised by Macmillan. At the talk I met Dr Catherine Zollman, the Medical Director at Penny Brohn UK. Dr Zollman spoke enthusiastically about the charity and encouraged me to visit its National Centre.