Leukaemia Care are running a series of days to help with coping with fatigue. The next one is in Cardiff on 15th September and then there is one in Sheffield and another in Edinburgh. There will be talks from a fatigue expert, Dr Anne Johnson and the agenda looks really interesting. At first I presumed these days would only be open to leukaemia patients but when I enquired I got a really friendly and welcoming reply. There were two people with MPNs at their last information day in Oxford and both of them said how informative they felt the day had been. I have taken the plunge and booked for the Sheffield one on October 13th.
The website is leukaemiacare.org.uk and then go into ‘support and information’ then ‘attend a patient information day’.
I will let you know how I get on and what I learn! I’m not expecting to become vibrant and full of energy (!) but there may be some helpful ideas.
Pauline
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Pauline43
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Thanks, Pauline. I'm in the states, so getting to Sheffield is a bit of a trek Hope it goes well and that you share whatever you learn. In the meantime, I'm going to see if there are similar kinds info days anywhere near where I am -- San Francisco. Good to know about all this.
Hello Kim, I believe Dr. Rueben Mesa is based in the Mayo Clinic , Texas, maybe you can get info of forums from them. I realise USA is a big country but you never know . good luck . June
Hi Pauline. Sounds really interesting, but too far for me. I wonder if they will do a webinar in future? I will be interested in hearing your feedback.
Hello. How are you doing after the ‘Coping with Fatigue’ day? Have you filled in the activity,rest and sleep logs yet? I have read all the booklets but haven’t quite got round to keeping the logs yet! I feel that I am more accepting of sometimes being overwhelmed with fatigue and don’t feel so guilty. I was very impressed with the literature given on the day and sent afterwards and I am very glad I had the opportunity to attend.
Much the same. Haven't looked at the logs yet but am more mindful of sleep and trying not to overdo it with activities . Have yet to find the magic bullet other than an afternoon nap that recharges my batteries, but only recently completed 6 cycles of FCR chemo so it's early days. Definitely agree about feeling less guilty about the fatigue.
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Hope it goes well and that you share whatever you learn. In the meantime, I'm going to see if there are similar kinds info days anywhere near where I am -- San Francisco. Good to know about all this.
A 2nd Webinar for MPN patients relating to government guidance on COVID-19. Friday 22nd May 2020 – 3 pm 
ET and Fatigue
Inflammation and Fatigue
Relapse, Coping with less Hope
