Linda
Relapse after 10 years in remission with follicular lymphoma and the decision to stay on the move
‘My story begins in 2000, at the age of 46. I had been having hot flushes for a few years and my GP assumed it was the menopause.Then one morning I noticed a lump on the right side of my neck, when I couldn’t fasten a necklace.
I went to the GP and a blood test was done. A week later I was at the hospital where the specialist there sent me for a biopsy, bone marrow aspiration and CT scan.
In August 2000 I was diagnosed with idolent (or low-grade) follicular non-Hodgkin lymphoma stage 3. I was given the opportunity to take part in a clincal trial and in October began 6 months of fludarabine, mitoxantrone and dexamethasone (FMD). The treatment was tough and there were days when the simplest task was difficult. Livng on my own meant that I had to plan when I was well enough to shop, and on some days my dogs had to settle for a ball being thown for exercise instead of a walk. After 5 cycles of treatment I was relieved to be told I was in remission.
I gave up work, as recovery from the chemotherapy was very slow. Fatigue and the ability to concentrate were the worst problems. My life had been changed by cancer. After 2 years of remission I remember my specialist asking what I was going to do with the rest of my life. I went home and thought about it. After a holiday in Wales in a cottage and meeting up with a couple who owned a motorhome, the decision was made. I bought a motorhome and have never looked back. If I travelled anywhere and got fatigue, I just pulled over for a rest and drove again when I felt better. In 2005 I drove my motorhome to Spain and took my dogs with me.
My specialist asked what I was going to do now I had given up work. I met a couple who owned a motorhome who inspired me to buy one. I have never looked back
In July 2011, I noticed a small lump on my skull and for a while it had the doctors foxed. One of my doctors thought it was a cyst, so I went to have it removed. However when I saw the cyst specialist he referred me on to a ‘lumps and bumps’ specialist at my local hospital.
I had my 6-monthly check-up with my lymphoma oncologist in December 2011 and nothing was showing in my bloods, although the lump was slowly growing. I was sent for a skull X-ray, ultra sound scan, MRI scan and finally a biopsy. The biopsy showed that my follicular lymphoma had relapsed. It was extra-nodal as it was not in the lymphatic system.
My oncologist sent me for a PET scan to see if there were any other tumours. There were only 2 which were either side of my neck, and they were both less than 1cm each, meaning that I was stage 2.
In 2012 I was given a choice of 4 treatments. The first was radiotherapy, but I ruled this out as there was a risk of permanent loss of hair, and at 58 I decided that I didn’t want to have a bald patch. The second choice was a course of steroids, but as the last course of steroids had given me a weight problem, I declined. Rituximab was the third choice, but it was decided to save this option for the future. I chose to take the fourth option, which was a course of chlorambucil, a form of oral chemotherapy. I took 2 tablets every day for 6 months and my side effects were almost non-existent. The tumour didn’t go completely but was classed as ‘stable disease’.
In 2014, the tumour on my scalp had started to grow again. After a PET scan and bone marrow biopsy, it was decided that, because the only other tumours were 2 small ones in my neck, I would have radiotherapy to the tumour on my scalp. I had 12 sessions of radiotherapy for one and a half minutes each and the hair in that area fell out. My hair has since grown back curlier than the rest of my head and remains shorter. I had further radiotherapy in 2014.
I have carried on with my life, although at a slower pace, and treasure it. I do some dog training, swimming and walk as much as I can. Exercise is a vital part of feeling well.’