Emma talks about her diagnosis of splenic marginal zone lymphoma and the splenectomy she needed

Emma with son Joel

‘I was 29 and had just got married to Matthew. But within 3 months of our wedding, I started to feel really ill; I was waking at night sweating and was losing weight without trying. In addition I felt really fatigued and when I stood up, I felt really dizzy with everything spinning. But the worse thing was the mouth ulcers I had that were like blisters.

I went to see my GP in January 2010 but he had no idea what was wrong with me. He referred me to a maxillofacial consultant because of the problems with my mouth. I was prescribed antibiotics and went to see him for 4 months, but felt really frustrated because things weren’t improving.

I had signed up to run in the London Marathon and was determined to do it. But I could hardly work because I felt so tired. I found I was going home and going straight to bed. I thought I could sleep all day the way I was feeling, so decided the Marathon was probably not a good idea.

I distinctly remember that time. I could hardly eat anything so relied on lots of milky drinks to help. I work as a Finance Manager, but in the end I was off work for about 4 months as I could barely answer the phone and struggled to get into work. But what was so frustrating was that I was still no closer to understanding what was wrong with me. It was suggested I may have ME.

The ulcers had improved slightly, but my mouth was scarred and ulcers kept coming and going. I was taking steroids to help get rid of them, but they still flared up from time to time. I saw a nutritionist who put me on a strict diet. My diet was dairy-free, wheat-free, gluten-free and yeast-free. Although it was really restrictive it helped and I started to think I would be OK and would soon be able to carry on with my life.

I became pregnant and at that time all the symptoms disappeared. I had no ulcers, no night sweats and no dizziness. The only problem I had was some backache that I struggled with. I had a baby boy called Joel, who is now 2. But as soon as my son was born the ulcers appeared again. I spoke with the doctor and said I knew for certain it was not worry that was causing the ulcers and insisted that I was referred to an allergy clinic.

Frustratingly for me, this didn’t uncover the problem. The tests showed I had no allergies, but after I had explained my symptoms and they had examined the scars in my mouth, they suggested I had tests for Crohn’s disease.

I had a scan to investigate the Crohn’s disease and they noticed my spleen was enlarged. They said they needed to carry out blood tests as it could be due to a number of things. The next day a doctor called to say that the tests had shown that my white blood cells were so low that if I got ill I should call 999.

I was referred to a haematologist, who initially thought it could be leukaemia and then considered lupus. I had to have a bone marrow biopsy, a CT scan and other tests. I still clearly recall going back for the results – it was just over a year ago.

I was told I had splenic marginal zone lymphoma. My problems had been going on for such a long time, but I never envisaged it was cancer. I asked if I could speak to someone else with the same type of lymphoma but they said it was uncommon and very rare in someone my age. I felt really isolated. But I was also relieved that they had found something and that now they could do something to help me. I had started to think I was imagining things.

I was relieved that they had found something and that now they could do something to help me

They explained that I would need to have my spleen removed, known as a splenectomy, which was carried out in June 2015. I was in hospital for 7 days which was really hard because I didn’t see my little boy and in total it took 10 weeks to recover from the operation. I now have to have penicillin morning and night and iron pills as well. A lack of iron seems to flare up the ulcers, so I need to control it and avoid being anaemic. I haven’t had any chemotherapy but I understand I may well have it in the future. So at the moment I am on watch and wait and they keep an eye on me as I attend a clinic and am seen every 10 weeks.

I received terrific care and can’t speak highly enough about the consultants and specialist nurses. My husband has also been brilliant, although he has found it really hard.

I attend a Lymphoma Action support group, which I find particularly helpful. With a rare disease, and especially rare in someone young, it has been helpful meeting other people in the same position and talking with others on ‘watch and wait’ like me.

I decided to change jobs after my maternity leave and am now able to work part-time which helps. My boss is really supportive and understands I need to take time off for clinical appointments. Another major bonus of working part time is that I have more time to spend with my little boy.

Last year I ran the Great North Run. I am a keen runner and was proud to have managed to run it in the fastest time ever for me.’

How has Lymphoma Action helped you? 

October 2016