Warm regards to our community. Tomorrow I’m going to my first Living With MPN’s meeting in London. I’m JAK2 V617F Essential Thrombocythemia diagnosed 2016 responding well to Pegysis Inteferon. My platelet count dive bombed (700’s)into the normal range as soon as I start Inteferon (300’s).
Anyone been to one of these meetings have any tips?
As an update, the fatigue I experience was so life changing that I took it to my team at Guy’s and we added another week so that I’m injecting every 4 weeks now. I hoped I’d gain a little more energy. It’s been a few months but not really sure I have. I struggle a bit with is it me, or is it my condition?
I would love to share with you though, my attitude towards my condition. It has shown me levels of self kindness that I have never known in my life before. I’m 63 next month and credit my strong SGI Buddhist practice and you here on MPN voice. Often I say only half jokingly that if you tried to take away my ET condition I would snatch it back saying “it’s mine! I’m very happy with the gift of self kindness it shows me! I wouldn’t swap that for the world!” But because my art practice is currently ceased, (a sculptor, my profile picture is of one of my portraits )I live in hope that that is linked to my condition and that that will change and that I will get back to producing work and possibly remission with the condition.
I’ll put a photo of me here and if anyone is going to tomorrow’s 18th November Cavendish Conference Centre, London W1G 9DT please come and say hello to me. I’m such a fan of MPN Voice it’d be a thrill to meet in real life someone from here! I really can’t express how much gratitude I have for everyone here
With the fatigue I’ve been vegan for 7 years vegetarian for 26 years before that so it has similarities with the recommended-to-us Mediterranean diet. I used to be very fit but that ceased as well although the last year or so I’m clawing my way back, nothing like what I used to be but a little exercise half the days in a given month is for me a cause of celebration, although it’s my nature to want more! Sometimes I just mark a walk to the station as an exercise
Apologies for the essay.
My very, very best wishes to all on their health journey here.
Yours
John
💟☮️
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Expect a busy day with lots of information and lots of friendly people! Be prepared to start conversations in the breaks and over lunch. They can be very rewarding. The break out groups are usually great. Have a wonderful time. (And remember lots of people will be wondering how they are going to get through the day without falling asleep!!)
Chris, thank you so much for replying. I had an awesome experience attending the event, and while I’m sad I didn’t get to meet you I can honestly say I am so glad I went.
Ebot thanks for your reply! You absolutely nailed my experience! Rewarding and packed full of delightful interactions and information. So glad I went! In all my newbie excitement I managed to not fall asleep!😂
So glad you had a great day. It was a super informative and well paced programme led by the powerhouse that is Prof Harrison and the fabulous volunteer team at MPN Voice. There was an extraordinary breadth (and depth) of MPN expertise and insight. Delighted to have met you, albeit it very briefly. I did look out for you at lunch but it was all a bit crazy! Keep well. All the very best.
Hello John, I just wanted to reach out to you and say hello and applaud you for travelling to London today, I am sure you will be embraced by the common thread that runs between us. I am not going, otherwise I would've come over to give you a hug. Although not a buddhist I am on the spiritual path, and sat here right now sipping my cacao morning drink, and like you see my condition (I purposely don't use the word dis-ease) as a 'course corrector' - having worked in the hospitality industry and burned the candle at both ends, eternally single, and attracting lots of bad boys, yes even til nearly aged 50 (ha ha - I was diagnosed at 49) and had every ism going, alcohol, workahol, shopahol; then I was dis-eased, now I have the condition, I have become 'more at ease' I know that will make sense to you. I am 7 years into my MPN journey (PV JAK2) and have used until now holistic therapies combined with a healthy lifestyle to keep me on track, my WBC and PLT have come down quite significantly lately (from around 17, to 13 and from 1600 to 900) I feel blessed to have re-gained my energy even after the menopause which was tough for me. I hope that today is nourishing for you and that you enjoy a warm welcome and some beautiful interactions - I look forward to hearing any take aways - and keep creating, I know this will nourish you more than anything and adore the photo that you have shared - is that Bowie? I would have loved to have met him - he is one of my idols and a great example of channelling his creatrix energy through thick n thin. Have a fab day and keep up the self LOVE - I am now working with the moon cycles and that week of the dark moon (hibenation week, is the most challenging and the very best, it's like a midwinter, every month, giving us a new surge of energy for the rest of the month) Blessings John - Keep shining Xxx
Fantastic message Roxanne!! I so get you and you were absolutely right in how I was embraced. Sending a big virtual hug back atcha! A woman who gave her experience mentioned the value of ‘faith’ and although I’m part of an organisation, I don’t think one’s faith or spirituality necessarily has to be traditional or organised but even a faith in humanity or love of life’s potential beauty goes a long way in shining a warm light on our unique conditions. I’ve loved reading your take!
Takeaways: As a once self obsessed workaholic I fell in awe at the piercing intensity and passion the professionals had in pursuit of understanding MPN’s and delivering the best care for us patients. The line up of dedicated people was super impressive. There was something like 17 on the panel. It was a treat for me to see and hear Claire Harrison. I’ve never met her but she leads my haematology team. She’s a tour de force! I feel like we here at MPN Voice are at the cutting edge of scientific research and are actually lucky to have a rare chronic disease because of these professionals it attracts!!
Roxanne, yes, portrait of David Bowie as Aladdin Sane. Enjoy the pic, jesmonite lifesize. 😁
So lovely to hear from you.
Yours
John
Xx
Portrait sculpture in pottery clay of David Bowie as the character Aladdin Sane
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Xxx
First uk mpn support group
