Sian Lewin

Sian Lewin was 52 when she was diagnosed with hairy cell leukaemia (HCL) after feeling fatigued and out of breath. She turned to writing as an escape during her recovery in 2012 and has now published four children’s books. Sian tells us more...

In 2012 I was taken off hormone replacement therapy (HRT), as I had fibroids in my womb. Within eight weeks I started to feel unwell, short of breath, extreme tiredness and sweats at night. As I was in the age group of menopause, I assumed it was that. The reason why I went to my surgery is because of the breathlessness, which I didn’t think was a menopause symptom. I couldn’t get an appointment with a doctor, so I saw a nurse, who was very helpful. She took a blood test and checked me all over. Within a couple of days, I received a phone call, saying they needed more blood as the blood was showing markers, suggesting a lymphoma. These were not the words I thought I was going to hear, but duly provided more blood.

The bone marrow test was a funny affair, as according to the clinicians I had very strong bones and struggled to get through! Eventually, reinforcements were brought in and after 45 minutes, they managed to get some bone and bone marrow, with me giggling as the gas and air kicked in.

The results took 10 days, and I was called into the LRI for the results. They confirmed that I had hairy cell leukaemia (HCL), a chronic leukaemia which is rare, and even rarer in women.

As I sat there, the words cancer, leukaemia and chemotherapy were the three words that resonated in my head. My husband was with me and heard the details. I was to start chemotherapy within two weeks, a week’s course of cladribine – a chemotherapy primarily for HCL. I was in shock as I thought it was the menopause, never thinking it would be cancer. The consultant assured me that HCL wouldn’t kill me, but what they were about to do might! The treatment involved killing all my white blood cells, then they would slowly rebuild.

The swiftness from blood test to diagnosis was very quick. My consultant thought that I could have had HCL for up to two years and that the HRT I had been taking could have masked it.

I started the chemotherapy within a couple of weeks, every day for a week. It was administered into my stomach. I was blessed with good friends who took me in each day for my treatment. Once I had finished the chemotherapy, I was told for eight weeks I had to follow a strict diet, no raw vegetables or bruised fruit etc. I was told not to meet with anyone who had any illness, colds or infections. Ten days after the chemotherapy, I became neutropenic; my white blood cells diminished. I was very careful taking my temperature twice a day. After a couple of days, I checked my temperature and it was starting to rise; I rang my Macmillan nurse, who instructed me to come to the hospital at once.

Sepsis had started, I was told once I had been checked over and they started intravenous antibiotics. My husband left me at the hospital, and it was the first time I saw the tears and worry in his eyes. We forget about the loved ones who have to watch on.

I spent three days in hospital and then went home to continue my recovery. During that time, I had injections into my stomach to improve my recovery and my blood, this was done by my neighbour Ann. This took a while as I have the most ticklish stomach!

After eight weeks I had some more blood tests and my blood readings started to build back up.

Fast forward to 2022, I have just gone into my 9th year of remission and am feeling so lucky; many people get HCL many times. I have joined various groups and the main one is The Hairy Cell Leukaemia Foundation in New York. They are so informative and have lots of advice and seminars, which my husband and I attended at the Royal Marsden in London a couple of years after I had been diagnosed. It’s great to meet people who have had HCL and understand how they have coped with it, some having it four times. One of the things I had two years after treatment was a loss of blood supply in my left foot. We never really got to the bottom of what caused it, but I had to wear a medical boot for nine months.

Within a week I was sitting in front of a consultant at the Leicester Royal Infirmary (LRI). They confirmed I had lymphoma but weren’t sure which type. In order to confirm which type of cancer it was, they needed to do a bone marrow test the following week.

I have met so many people around the world through having had cancer, and I have also had the opportunity to raise money for those affected by blood cancer.

In the last couple of years, I decided to leave the corporate world and write. During my recovery in 2012, I wrote a children’s story about my two dogs. In 2020 when I had to shield, I wrote a further 8 stories, recorded them and then self-published the first 4. Having cancer makes you aware of the fragility of life and to strive towards and achieve your dreams.

To purchase one of Sian’s books, visit her page here.

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