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My symptoms started with migraines with aura – a first for me – in early 2017. These were terrifying as the sight loss comes first. I then kept getting recurring chest infections, despite having antibiotics and chest x-rays, and felt fatigued, which I put down to working full time, as we all do. Thankfully, I had a very good GP who had noticed that with every blood test I had over a period of years my platelet count was continually rising, so he said he would refer me to haematology to see what they thought. The funny thing was my GP said, “They might not even want to see you, and might just recommend going on to aspirin.”
I heard back from the hospital quite quickly and had my first appointment, which I have to say does take a long time – I was there for over four hours. After this I had to wait six weeks until my next appointment and results. I’ll be honest, I didn’t expect to hear anything worrying. But then the consultant delivered the results. He said, “Well, you have tested positive for the JAK2 mutation in your bone marrow, which means you have essential thrombocythaemia (ET).”
I looked round at my husband, who reached across and put his hand in my knee, and I could see the shock in his face. I asked what this meant, and to be fair he described the condition to me very well and in such a way that we could understand. He asked if we had any plans to have more children and I looked at him and said, “More children? I turned 50 in August and became a grandmother one week ago, so no we aren’t planning on more children.”
Then he said, “Well if it’s any consolation, I wouldn’t have put you in that category.” So, I got a compliment along with the not so good news. He then starting printing off information on the condition on Macmillan headed paper which freaked both me and my husband out, but he told us not to be alarmed by it.
My husband and I came away from that appointment in a trance. We drove somewhere for lunch, but I don’t remember much about it. We talked and I made a few decisions about who and how I was going to tell. My daughter and her husband had been through IVF successfully and had a wee boy, our first grandchild, only a week before, so I decided I wouldn’t tell them as I didn’t want to burst that bubble of happiness with my news. Then because I hadn’t told my daughter, I didn’t feel it was right to tell my son, who lives at home. So, I only told my sister and my work. I can remember even when saying it out loud I felt like I was talking about someone else. Obviously, this was a coping mechanism but I didn’t realise that at the time. I have a very bad family history: my mum died at 56 with breast cancer, when I was 16; my dad died at 65 with bladder cancer, when I was 20; my brother died at 49 with leukaemia and I had a sister who died at 17 with cardiomyopathy, when I was 7, so my poor sister was having to go through yet another family diagnosis.
Everyone was shocked but very supportive, then as that Christmas was approaching, I told my husband I wasn’t going to tell my daughter and her husband and my son until the New Year, as it was the first Christmas with our grandson and my daughter’s 30th birthday. Again, I didn’t want to tarnish these milestones with bad news.
I did find it hard at times as I would go to say something about my diagnosis and then have to hold back. My husband was and is unreal, so supportive and understanding, so I’m very blessed. I told the rest of the family in January, and although upset, they were great and very supportive.
I continued to work but then the whole thing hit me like a ton of bricks and I ended up off work for six months. From my diagnosis I was being seen every three months at haematology and on aspirin only, as I was what they call watch and wait. They extended the time between appointments to four months, and all was stable. I still got headaches, not so many migraines thankfully, had fatigue but managed all these and kept going.
Then COVID-19 hit, and my appointments were changed to telephone ones, which was fine. In April 2020 I was furloughed from my job, which I was happy with as I had felt vulnerable in work, and even after talking to management they weren’t very understanding of my concerns and my vulnerability to COVID-19 because of my illness. I did have heated debates with them which didn’t help my stress either. I got my shielding letter in July 2020, when I also called into work to be told I was being made redundant. There were multiple redundancies at all their sites so I can’t say if it was due to my illness or not, but they said it was due to COVID-19. I found it tough news to take as I had been in my job 10 years and had so many friends in work, but there was nothing I could do.
At the minute things are very up in the air for anyone with blood cancer, as although I’ve had my two jabs, we don’t know if they offer the same protection as for the general population. This in turn has caused me to practically shield again as I am nervous to go anywhere with lots of people, especially with the new variants of the virus. I’m fortunate that my husband has been working from home since April 2020. His work have been brilliant, and because of my vulnerability they have allowed him to work from home for good. I keep my bubble small – only my daughter, son-in-law and grandchildren are in my home and we’re very careful.
At my telephone appointment in May 2021, I was told I have developed another myeloproliferative neoplasm (MPN) called polycythaemia vera, which was a complete shock, so now I’m being seen three-monthly again. I have now also had to start taking cholesterol tablets and blood pressure tablets to help reduce my risk of stroke or heart attack. With everything I have going on, my anxiety was on overdrive and I was very down, so I’m also taking sertraline to help with that. I’ve always said with these types of illnesses people assume you’re OK because you’ve showered, washed your hair, painted on a smile but no one, except the people closest to you, see the effort it has taken to do that or see the fatigue, the headaches, the down times.
Until I was diagnosed, I wasn’t even aware MPNs existed, so I think it’s very important to highlight our stories, as you never know who it might help.