Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am
Morning everyone...
I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process of having a Stem Cell Transplant (SCT) procedure.
Jedi Reject's story unfolds through his warm conversational tones, where he still finds a moment or two for some delightful humour in the midst of all this apprehension.
Very few, other than people with an MPN, truly grasp what some of the adverse affects are like to experience when travelling along this path. However, through the courage of those who share their MPN Journeys with us, they are able to bring some hope, and some unity. Knowing, that none us are ever really alone anymore, because now we have each other...
There are many more MPN Stories available to read through, but Jedi Reject's is particularly special for me personally...
Chris, we have been friends on MPN Voice for many years now. Thank you so much for writing your story. You truly are the strongest man I know and your sense of humour from the first days of corresponding with you is still there. I remember you posting that photo of your first day in hospital. Only you could do that. 😆
Chris is one hell of a nice bloke, kept us in stitches through all his treatment, with photos and hugely funny comments and what his lovely wife was having to put with, even though the treatment was long and very arduous, believe his sister was his donor he always had a ready smile through out.
I am glad that you are able to share this lovely man on MATES.
Thanks, Steve, for posting this. I joined Mpn-voice in 2018 and you and Chris were two of the first group of people I started corresponding with. His story is of great interest to me because I was told the same thing by my mpn specialist last year that I would probably need a BMT within 3-5 years for my MF. I don’t know if I’ll have the emotional and physical strength to go through it, if it comes to that. He is truly a Jedi, a gifted writer, and of very strong character. And, you Steve, even though you live halfway around the world, you have been a wonderful support system to me.
Thank you kindly for your thoughts & sentiments...
Chris has indeed been an inspiration, (since I commenced my MPN journey), and I am sure the same may be true for many others here too...
Even more courageous, for reliving that journey, so others might in turn might glean some wisdom, and hope vicariously through that warm retelling...
Perhaps not everyone shares the same philosophy in life, however, we are all bound together by this same organism we choose to call Earth, in my view... Helping each other, is really helping ourselves...
Chris is a fixture on this Forum and was very much in evidence when I joined some years back. His resilience and humour have brought comfort - and a smile - to many. Great to read Chris’s story from the start. And thank you Chris for sharing with us. Keep well.
It is all over so quickly when you read Chris’ story but for him actually living through it it was anything but quick. Since survival was the very purpose of the transplant he fought everything thrown at him with the help of his team. Such character! I once asked him if he regretted going ahead with it but it was obviously a silly question as the alternative was unthinkable too. Grandchildren provide extreme motivation and his absolute rock of a wife has been his support throughout
I still believe he should no longer call himself a Jedi Reject as I’m sure the Jedis would be proud to have him as part of their team. I salute you Chris, my friend and may the rest of your days bring you all the rewards you so richly deserve
Hi Steve, et al , , Many Thanks for your kind comments and as before I feel humbled reading some of the lovely things you've all said. I did find it quite hard to revisit parts of my journey to Recovery which as Jan pointed up was over a lengthy period some of which was extremely testing even for a Jedi.
As I've said many times as its a major point I had my wife's love, devotion, 24/7 care, and unwavering support throughout and still do. It could have been a very different outcome without it. The carers are the forgotten army in many cases but if anything it's worse for them.
Also the level of morale boosting support I received from the good folk here on this Forum played a big part in my recovery too. There were periods when I was too ill to concentrate long enough to post but when I did I was overwhelmed by the responses. Thank You.
The SCT route is a different journey for every person who decides to take it as their final throw of the dice. I'm one of the lucky ones of which there are many, who is able to enjoy life again albeit it took me a little longer and Im left with a couple of residual issues.
I was happy to document some of my experience for Mates when Steve asked me and my hope is that it doesn't put anyone off but inspires people to see that in even in the most extreme cases where there's life there's hope.
I just got a call from my hematologist tonight and he said I have the jak2 mutation that’s all I know except for my blood test. He wants to see me next week. I’m so scared and worried after reading about Jak2 on the Internet
Try to remain calm... We have all felt that frustration in having to wait upon results...
However, there are plenty of us here that can help you understand some of the fundamentals as you start this journey in our very exclusive MPN 'ONLY' Club
Many people w/ MPNs live near completely normal lives, (including longevity).
Take your time and learn a little about what MPNs are and discuss your concerns here w/ the other members. Everyone here is filled w/ empathy, and we all truly understand how overwhelming an MPN diagnosis can be...
Incidentally, I am Post ET / MF, CALR+ Type2 (Driver mutation - whereas you are JAK2+).
Diagnosed in 2016, (61yo), and possibly fitter and healthier now than when I first learned about my MPN.
Happy to answer any questions you might have but please just try to stay positive and calm...
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Parliamentary launch of “Do You C Me?”
