I’ve been diagnosed with myelofibrosis now for about three years, and in thinking over how its been, and how it is now, I’ve come up with BAT and BALL as the best strategy ( cricket or baseball - no difference) . The BAT is the standard research acronym for Best Available Treatment. Once you are hapoy that you have the BAT, the aim is then BALL - Best AvailabLe Life. And to achieve a good score, as in all games, you need a good team atound you.
If anyone could turn that into a visual form, that’d be fun.
Rachel
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Rachelthepotter
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Wise words Rachel! I hope you are managing to live well and I agree the ‘team’ around you is vital. I’m my husband’s advocate and you kindly responded to my question about EPO injections. He had his third one yesterday and they seem to helping, We’ll see what the blood tests tell us next week. Wishing you all the best.
Hi. How nice of you to put it in terms of a game, something fun. I hope you currently have the best BAT & Bal going for you. Have a good weekend & take care. Katie
You’re right. Being on this sight has encouraged me to seek a second opinion finally after 11 years with the same hematologist. I don’t think my current dr explains things very well and the last several months, despite treatment, my platelets keep rising. My new hematologist appt is April 3rd. So thank you for your wise words.
I really like that analogy -- easy to remember when things are difficult, inspiring to follow when things are better and options for action more possible. Thanks!
I love this analogy Rachel especially is I love sports. I hope you don't mind if I share the idea to a group of doctor mums trying to keep going with work and battle on with chronic health conditions such as MS etc. Think they will find it inspiring.
I hope your bat and ball and team on great form at mo.
Sadly at the mo I feel a bit like I'm playing with a funny shaped rugby ball on a very wet and windy day and my team have left me out there in the rain. However I shall now aspire to the england ladies hockey team, a Serena Williams fabulous serve or a Rory Mcillroy drive as all required lots of practice and team work and as you say a great support team needed.
Ah thanks Kelly. Tis more the home team struggling a bit at the mo but luckily have lots of good friends and family to talk to. Hope you are keeping well xx
Could also do with a bit more home team support , but BAT and BALL not too bad, all things considered. Am off to Portugal for a short trip while I still have travel insurance, organised by an Australian girlfriend who has some very similar issues to cope with.
I was in Oxford last weekend singing with a scratch choir for a concert given by the Afghan Women's Orchestra - singing in Dari with the Afghan Women's Orchestra in the Sheldonian Theatre (sounds like Cluedo, doesn't it) was a personal first. Life goes on - but it's not quite like it used to be.
Rachel
PS do feel free to PM and have a good rant if you need to!
Hi Rachel- congrats on singing with the choir- sounds amazing and yes very cluedo like with the candlestick in the ballroom with Rev Green!. Have a wonderful time in Portugal with your friend. You are very inspiring thank you. Heidi xx
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Yesterdays Living with MPNs day
Living with MPNs conference 5th November London
