MPN: I wouldn’t change life for quids
Even though Lesley Royle has been battling the ups and downs of MPN for 22 years, she still describes herself as one of the most blessed women alive as she speaks fondly of her husband and children who have made life worth living.
Since she was diagnosed with Essential Thrombocythemia (ET), a type of MPN, Lesley has experienced almost every side effect and tried every available treatment to keep her symptoms under control.
Lesley was only 27 when she was diagnosed with ET after being told she had chronic fatigue, post natal depression and a range of other illnesses.
“In the two years leading up to my diagnosis, I knew something wasn’t right,” Lesley said.
“I was chronically tired and unwell. One night I fell asleep face-first into my dinner so I visited a GP recommended by a friend.”
“Tests showed my platelet count was doubling every couple of days. By the time I was referred to my haematologist, my platelet count was 1.5 million; a normal count is 150 to 400. A bone marrow biopsy confirmed I had ET.”
Lesley was immediately put on huge doses of hydroxyurea (Hydrea) to reduce her platelet count quickly.
A “walking time bomb”
“I was a walking time bomb in great danger of having a stroke. In fact, I was told to go home and put my affairs in order.”
“At that time the small amount of information I found on MPN said it was usually diagnosed in people over 60 and that I would be dead in five years.”
“I became quite depressed and thought, ‘what is the point, I am going to die anyway’.”
Her frustration at the lack of MPN information inspired Lesley, along with a fellow patient she met through an American online support group, to write a leaflet which explained what
to expect when diagnosed with MPN.
One of Lesley’s biggest challenges throughout her years with MPN has been dealing with the side effects of treatments.
“Hydrea has kept my platelets down below 400 but I developed lymphodema because I was on such a high dose. I tried interferon but unfortunately I had an allergic reaction to it and ended up back on Hydrea.”
“I also tried anagrelide (Agrylin) but it caused serious fluid retention and cardiac problems. I’m currently on a combination of a lower dose of Hydrea and interferon to give my body a ‘Hydrea holiday’.”
“As a result of my extremely high platelet count I had two mini-strokes. The first occurred shortly after I was diagnosed which resulted in some permanent memory loss, and the second was 10 years ago which caused total loss of vision for a short time.”
“It’s been a hard journey but I remind myself that although I might have a bad day, I don’t have a bad life. I might have crappy days but I wouldn’t change my life for quids.”
A support network is key
In the last couple of years Lesley has been attending the Leukaemia Foundation’s MPN Coffee cake and chat support groups and said it was “wonderfully reassuring to chat with others in the same boat and to know I have a larger network of support”.
Coffee, cake and chat groups
Find out more about our Coffee cake and chat support groups.
Lesley’s story appears in the very first edition of our newest magazine Blood Cancer News, our essential resource for everyone and everyone affected by a blood cancer.