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Linda

Relapse after 10 years in remission with follicular lymphoma and the decision to stay on the move

Linda enjoying travel

‘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

Linda

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.’