I cannot remember when the pain in my back started. It was probably many years before my lymphoma diagnosis, but I just got on with life as normal. When the sciatica struck it was a fight to get through the day, and I put the fatigue I was feeling down to being worn down by the pain. Eventually, and thankfully, my GP put me on some prescribed pain relief which did help at first, but not for long. I would go back time and time again asking my doctor to increase the dose- to the point I had reached my limit. So in August 2018 when my husband, Alex, and I sold our business ready for retirement, I went back to see my doctor to get to the bottom of my problem. He organised an MRI scan and he asked me if I would be willing to have an operation if it came to it, as he suspected it was a disc problem. I told him I was most willing and ready - after all I had my retirement to work at!
In January 2019 I had my first MRI scan and for the first time I felt anxious. Four days later the doctors surgery rang and I was given an appointment for that afternoon. I now sensed something was very wrong. I think my GP was as shocked as I was. He told me that I had lymphoma, but more tests were needed to determine the type of lymphoma I had. We both just looked at each other in disbelief, but then he got on with organising a CT scan and I had the first of many blood tests. At that point I felt it was important for me to stay focussed, positive and in control.
When I came out of the Doctors surgery I sat in my car wondering how I was going tell Alex this news. I just sat for a while working out the words that were about to come tumbling out of my mouth. Retirement wasn’t supposed to be this bumpy, but I knew I had to stay calm.
I was referred to a Consultant Haematologist where I had further bloods taken, along with CT and PET/CT scans and finally a biopsy. Up until the biopsy I stayed relatively calm. The reality of my situation came to a head when I heard the click of the biopsy needle taking a sample from deep inside my neck. I just couldn’t stop the tears at this point, I simply felt exhausted with it all.
A month later, I was diagnosed with widespread follicular lymphoma together with a soft tissue mass in my lumber region. My medical team decided that the best course of action at this point was to put me on active monitoring (watch and wait). It took me some time to understand what this meant. I thought ‘I have cancer, can’t they just take it away?’ Why was it up to a team of people I have never met to decide my treatment plan? With time I came to understand a little bit more about my condition, and that is all thanks to information about lymphoma I found on the Lymphoma Action website and in Lymphoma Matters magazine. I found it particularly helpful reading other people’s experiences, and in the early days of my diagnosis I read the information booklets relevant to my condition.
The pain in my back got steadily worse so I had another MRI scan which showed the tumour had grown. In the January of 2020 I began radiotherapy. I hadn’t appreciated the power of this treatment and the impact it would have on me. I felt and looked dreadful. It was comforting when halfway through having the treatment I had a meeting with one of the radiologists, who said I was doing well. This gave me encouragement and it was an opportunity to let them know if I had any concerns. Radiotherapy made me feel more tired and uncomfortable. I was off food and certain types of smell and taste would make me feel nauseous. It would take some weeks later before I started to feel better. A follow up scan showed that my lumber tumour had shrunk, but only marginally. I was put back on to active monitoring and have remained there ever since.
As I write this in May 2025, my lymphoma is still stable and I am monitored regularly through routine bloods and contact with my consultant. I have the occasional scan when it is felt it is needed, and I take prescribed medication to help with the pain. Tiredness, as most people reading this will know, can be just as debilitating as pain but I have learned to take a nap and that it’s OK not to feel OK. So, if you are reading my story please be kind to yourself - each day is a gift.
Having a cancer diagnosis threw me into every possible emotion and I have to admit I just wanted to curl up and hide, but I didn’t - I eventually accepted that it’s just a different journey from the one I had mapped out for myself. But I do feel that since I was diagnosed, I have grown as a person with a determination for life.
When my back pain first started, a good friend suggested I take up yoga. I joined a local class and soon formed close friendships with a group who have supported me throughout my cancer journey. At the start of the Covid-19 lockdown, they decided they wanted to help me and others in a similar situation and the idea of a fundraising recipe book was born. Since then we have all shared our favourite recipes and compiled our book, which encompasses our friendship and love of food! I cannot thank my friends enough for sharing their recipes and I want to offer a special recognition to Joan, our yoga master and dear friend, for her tireless work in putting our book together. We would love it if you would be able to make a donation of your choice to support the work of Lymphoma Action in supporting others affected by this type of blood cancer.