Juliet B, 67 years old.
My MPN was diagnosed in 2020 through the results of blood tests. My GP had seen that my platelet levels were very high, and combined with my fatigue, he decided he would request further investigation and referral to a haematologist. I was relieved when my MPN (ET) was diagnosed, and that all the health problems I had been experiencing were a result of the ET.
I wasn’t shocked, angry or upset, just very sad that my life would change.
Because of covid, I was on my own at my initial diagnosis, and apart from regular blood tests, my MPN is managed by telephone appointments. As a result, it can be difficult not to feel just a hospital number.
I found a buddy through MPN Voice for emotional support which helps a good deal. We speak every month, and it’s been useful and comforting for each other.
Because of my extreme mental and physical fatigue, I have engaged the help of a support worker who comes regularly to help me with bills, paperwork, and IT issues. I felt frightened and bewildered for a few months after my diagnosis, and we were still in covid lockdown, so I spoke to my sister (a breast cancer survivor) every day on FaceTime, and spoke to friends from church, who also did my shopping for me.
I walk with a stick for confidence, and pace my weeks and plan what I do carefully. I ask friends for lifts for longer trips to appointments, I eat sensibly, and rest when my body tells me to. I try to have a routine for getting up and going to bed at the same time, and since I live alone, this doesn’t impact on anyone else! Some people, such as my parents, haven’t really grasped what I have and because I look well, it’s difficult not to feel a fraud. There are some friends who have ignored me completely, but that says more about them and how they respond to cancer, and I haven’t taken it personally.
My advice to anyone living with an MPN is to explain to friends and family that there are changes that have to be adapted to and that fatigue in particular dictates the patient’s ability to do as much as they could previously. And keep the explanation of the MPN simple if they ask what it is! Other advice would be to keep your hospital numbers with you at all times, try to build a relationship by email with a Macmillan Cancer Support worker if you can, and read as much as you can on the subject but stick to trusted organisations like MPN Voice or Blood Cancer UK.
