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I had felt unwell for a couple of years, finding it very difficult to keep up at work, and even falling asleep at my computer whilst taking calls. This became a nightmare as I could not keep my eyes open and even found myself dreaming whilst trying to work.
My company ended up finishing my contract, even though I had worked for them for almost 20 years. I was devastated but knew I could not keep up at work, being ill and in and out of hospital.
I had my first episode of neutropenic sepsis before I was diagnosed. I had to go to the A&E department because I felt so ill. I was put on IV antibiotics and was admitted to hospital. This led to my first bone marrow biopsy, which showed some problems with cloning, but it was not fully explained to me.
After I first saw my GP about my symptoms, I had a blood test which showed low neutrophils. My GP said it was probably due to a previous infection and would re-do the test in a few weeks. Nothing to worry about.
I then saw another doctor at the hospital for an unrelated problem and he did blood tests. He was very concerned that my neutrophils were only 0.4. He told me to go straight to my surgery and see my GP. From then, my GP referred me to the hospital to see a haematologist.
The day I was told I had blood cancer was very upsetting, but the doctor was very matter-of-fact about it; I did not feel ‘matter-of-fact’ and that was not what I needed.
The haematologist just said I had t-cell lymphoma and that it was malignant. It was later that they said it was large granular lymphocytic leukaemia (LGLL). I did not receive any information and left feeling very upset and uninformed. I did lots of research of my own on the internet, where there was little to be found at first. My own GP was very supportive even though she had little knowledge of LGLL.
I had to attend the hospital every week for about 18 months for blood tests as my neutrophils went even lower to 0.1. I then had a second episode of neutropenic sepsis and was hospitalised again as an emergency.
I was started on methotrexate, but it took almost two years before my neutrophils improved.
I was given GCSF injections to help raise my neutrophils but, unfortunately, they did not work and the injections made me very ill. I was told I was one of the 5% who could not tolerate this medication.
I was still attending the hospital, if not every week, then every two weeks for the first couple of years. My previous life was a distant past. I was always too tired to go anywhere and too fearful of picking up infections from crowds, so I became something of a recluse.
Over the last two years, I have had a further three episodes of neutropenic sepsis, the worst one in January 2018. The haematologist said I would not die from LGLL, but I could die from sepsis.
I have become more informed about my LGLL and there is now Leukaemia Care, which I have only recently become aware of, where you can get up-to-date information and much needed support. You can also make contact with the few others with LGLL on a Facebook page in the USA and one in the UK, but as LGLL is very rare one does feel very isolated and alone.
People often say how well I look, as if they don’t believe I have a blood cancer. Of course, most people have no idea what I have gone through and how I feel at my worst.
At the present time, I am still taking methotrexate and it is six months since my last hospitalisation. I am feeling better at the moment, but I am always fearful of getting ill because it really feels like I am dying when this thing takes hold.
I see my haematologist every 12 weeks now as my neutrophils are much better at 1.5. The problem is, I only need to get a simple cold and my neutrophils take a dive and disappear and then I become ill. So, it is always hanging over me and I always feel it is only a matter of time before I become hospitalised again. It has been life changing.
I have found that many doctors do not seem to take this too seriously, mainly because they have never come across it, and of course not everyone becomes as ill as I have been. It is a blood cancer after all and should be taken seriously.
Spot Leukaemia is extremely important because anything which helps to raise awareness and get an early diagnosis and positive help from the medical profession has got to be good. The sooner you get a diagnosis, the better. The waiting is dreadful and it goes on for many months. The more information you can get, the better you feel, and it is good to know there are people out there who are fighting your corner to get recognition and help for anyone with a rare disease like LGLL.