Gill and Margaret’s story

Margaret and Gill were both diagnosed with essential thrombocythaemia (ET), a rare blood disorder that causes a high number of blood cells called platelets to form. Despite the rarity, they found friendship in one another through the Leukaemia Care buddy scheme, to find they only live one village across from one another! Margaret and Gill share their stories...

Gill 

“I was diagnosed essential thrombocythaemia (ET) when I was 57, but due to the rarity of my condition, I didn’t have anyone but my haemotologist to talk to about my condition. I felt pretty much on my own and after being given a leaflet on ET by Leukaemia Care, it all felt pretty scary. One minute I was a healthy 50-year-old something and the next, I’m seeing a consultant haematologist for the rest of my life, for a disease I have never heard of!” 

Introduction to the buddy scheme 

“I was drawn to the buddy scheme as I found the diagnosis and the prospect of taking a chemotherapy drug for the rest of my life pretty scary and rather lonely. It is always good to share your problems and I didn’t want to burden my children or anyone else in the family initially, so someone a little more detached with experience of the disease would be beneficial.  

Kay, Leukaemia Care’s Buddy Coordinator got in contact with me, however, I was unsure with what I could offer as a buddy as many posts on forums made me feel like I wasn’t suffering as much as others with ET. However, I decided to go ahead and fill in the forms. 

Kay asked me if I would like to buddy a lady that, like myself, lived in the West Yorkshire area; we were all amazed when it turned out that she lives only four miles from me! We have since talked on the phone, sent text messages and have met up twice for a chat. Margaret is lovely person and we have talked for hours; it is good to meet someone who you are able to discuss your shared experience with. I hope that we will not just be buddies, but will be good friends too. 

It is a great scheme and I wish I had taken advantage of it earlier in my journey. Everyone with a myeloproliferative neoplasm (MPN) should be offered a buddy.” 

Margaret 

“I was diagnosed 20 years ago, after seeing a dermatologist due to having terrible burning pains in my toes and a lesion on the back of my leg. I kept seeing the dermatologist and he’d done a couple of biopsies.  

The day before Christmas Eve I had a phone call from a haemotologist who told me I had been passed onto him because they notice something going on and suspected it was a blood problem. I was called in for a bone marrow biopsy and later diagnosed with ET. The haematologist sat in front of me, gave me some tablets and told me I was maybe looking at 20 years of life expectancy; I was gobsmacked! I knew absolutely nothing of blood cancer and I was shattered. I felt isolated and alone – there was nobody to talk to. It’s not like one of those conditions where somebody down the street had it.” 

Introduction to the buddy scheme 

“After being in touch with the local doctor and Macmillan, Leukaemia Care got in touch with me and told me they had found someone with the same condition as me. I was told she lived in the village over from me; I thought she was joking, it was unreal! 

They put me in Gill and we had a conversation and she was absolutely fantastic. She gave me her number and told me we could meet up straight away; it was completely open and wonderful. This is what I was looking for.  

We met locally at a local garden Centre in October 2021 and had a coffee and it was wonderful, it was absolutely magical. In fact, I was quite emotional. And I found out about her, and how she was diagnosed 15 years earlier and there was so much we could compare notes on. I think for me, being able to talk to someone face to face has made all the difference and she’s very much my sort of person, young-at-heart, she’s just wonderful I couldn’t believe it. 

I would recommend the buddy scheme to anybody who needs someone to talk to. You need someone to talk to who understands what you’re going through and all of the silly little things that go along with it. Just to say to somebody, “Yes, I know what you mean.” 

I’m so grateful for Leukaemia Care, it’s a game-changer. I know that Gill is out there for me now and I know I can reach out to her.”  

Update 

Gill and Margaret are still wonderful friends and still meet up for a catch-up. 

Recently, Margaret took Gill to Rudding Park Spa as she had a membership – they had a lovely day in and out of the warm outdoor pool and steam rooms. The next time they meet, Gill is planning to take Margaret to Harlow Carr Gardens as she has a membership. They even have a Betty’s there (for traditional afternoon tea!) for a lovely lunch. 

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