‘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.
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.’
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