5th Anniversary : Hi Folks , , many of you will be... - MPN Voice

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5th Anniversary

JediReject
JediReject

Hi Folks , , many of you will be aware of my Stem Cell Transplant for Primary Myelofibrosis which happened 5 years ago today. . It wasn't an easy ride in my case and my battle with Graft Versus Host Disease is well documented on the Forum. Also the issues caused by high dose steroids needed to save my liver, namely Diabetes (now gone) , Cataracts (lasered) , Water retention (gone) and Osteoporosis (tablets).

So I would just like to take this opportunity to once again THANK those of you who supported me throughout and helped to get me where I am today. Although I tried to smile through there were times when I could of given up were it not for the kind words and encouragement freely given here. 👍

Also I would like to say that although I appreciate the Transplant route isn't for everyone I would like to say to those who might be considering it now or in the future please don't give up hope.

I am living proof that sometimes miracles do happen. Since my SCT I have a further 4 Grandkids with another due early next year. . Well worth all the battles to pull through.

I have attached a pic of a few of my faces over the past 5 years, some were too scary.

Regards -Chris x

94 Replies
oldestnewest

Hello Chris,

Good to hear from you and pleased to read that things are going fine for you.

My 5th ´new birthday’ was a fortnight ago - my journey was a little easier than yours.

High levels of cortisone also have taken their toll on my joints and my skin looks like fish scales from time to time (gvhd) but it’s all been worth it.

Take care.

Bye for now

Gary

JediReject
JediReject in reply to crapaud

Hi Gary, , please accept my belated re- Birthday best wishes. . We've both one well and been fortunate to be given a second chance. And I'm pleased to see that you too think it was worth the risk. I was always going to do it come what may because i came to hate my MF and wanted rid.

Really good to hear from you mate.

Chris

Hi. Lovely news to hear you have come out of the worst. I have met you occasionally when with my husband in clinic. He’s 6 years post SCT. Although he is now dialysis dependent and needing open heart surgery caused by sepsis we still have a very happy and good life. In 2013 he was only given 12 months to live with having myelofibrosis/ myelodisplasia and he’s doing very well, all thanks to his lovely sister who was his donor.

JediReject
JediReject in reply to Ednama

Yes Ednama I recall meeting. Your husband has done well but obviously now has other fish to fry. . Strikes me that some folk are born to suffer and life can be very unfair. You must be a remarkable woman to carry the weight of your man's burden and like my wife and I have a strong bond.

I wish him all the best going forward , it can't be easy after getting through his SCT.

Regards - Chris

Hi Chris: Congratulations on your 5th anniversary -- that is a wonderful accomplishment and a miracle, all at the same time. I'm so happy for you, and so glad your grandchildren have their grandfather to play with them. Best wishes, Kim

JediReject
JediReject in reply to ksos

Thanks for your kind words Kim, , funnily enough a couple of the kids were here today and we had some fun for a short time , , it's lovely to hear their laughter and sometimes tears.

Regards - Chris

Yes Chris, you must change your name as you would not be rejected by the Jedi. Your ways of dealing with your journey are a lesson to us all: never give up, battle on, you can do it and so much more. An inspiration to anyone who is struggling on their journey at the moment! You certainly made me think about my journey and I haven’t been through half of what you have!

Love and kindest regards to you, your wife and family. Aime xx😻😻

JediReject
JediReject in reply to Aime

Hi Aime, , yes a name change has been suggested before but I'm happy with it.

Sometimes people or things come along which make us stop and think , take stock of ourselves, where were at, where were going etc. And that kind of happened to me after I'd trundled along with my MF for 9 years and it struck me Id reached a fork in the road and it was time to decide whether to carry on trundling , waiting for the next wonder drug or opt for transplant. Obviously the latter won the day.

So if my story inspires anybody or makes them reach a fork in their road then that's a good thing in my book.

You help many on the Forum with your boundless support and advice and are a true tour de force here.

Kind Regards - Chris x

Hi Chris congratulations on reaching five years. It is hard to believe that your journey with SCT is now that old! You always managed to keep us up to date with how things progressed and it can’t have been easy some days, but you always managed to keep positive. Enjoy your grandkids - they are a great incentive to keep going! Say hi to your good lady wife, who really did travel the long journey with you.

Best wishes.

Janice

JediReject
JediReject in reply to bruddery

Hi Janice, , yes hard to believe it's 5 years, but it is , honest ! Of course I lost a couple of them as I was non compos mentis at times during my recovery.

My wife was and still is a tower of strength for me. I couldn't ask for a better life partner and I will say Hi.

I think it's important to try to be as positive as you can though some of it can be down to your personality or general outlook.

Best wishes to you x

Hello Chris. Lovely to hear from you. Five years on and look at you .How you battled every problem and no complaining. As always take care , our son is thankfully keeping really well had been due home from Melbourne in June but we will have to wait until its safe to come. Hope everyone else who has had a SCT continues to keep well including Gary, Chris, Simon . Bye Gill

Thanks Gill, I hope it's not long before your son comes home, it's a worrying time for everyone especially if family is abroad.

I wouldn't admit to too much complaining but rest assured I'm only human and had my moments raging.

Regards - Chris

So glad you posted. Although as yet I’m only ET I often wonder what life has in-store for me. Thank you

JediReject
JediReject in reply to Wyebird

Hi Wyebird, with any luck your ET will be well managed and you'll be fine. I do hope so anyway. Not everyone transforms or progresses on.

Enjoy life !

Regards - Chris

“Fear is the path to the dark side…fear leads to anger…anger leads to hate…hate leads to suffering.”

You are a true inspiration and will give hope to many, thank you for sharing your experiences.

Good luck and have fun,

Ourlife

JediReject
JediReject in reply to ourlife

Haha spoken like a true Yoda. . It's real you know.

Thanks for your kind words.

Chris

Hi Chris, wow five years, this has just flown by, but it’s good to see you looking well and with a good colour to your face, I still remember some of the pictures you posted when you first had the stem cell transplant op, some of them were really quite funny, but not the ones where your eyes were so swollen from all the drugs, you were a true inspiration to us all.

How is your wife doing, I bet all the grandkids keep her busy, hope you are able to partake with the fun of having them around, makes life worth living does it not.

I know what it’s like to have all the worry and stress of having a member of your family become seriously unwell, my daughter was diagnosed with a rare cancer seven weeks ago called parosteal Osteosarcoma they had to remove her thigh bone and some of the muscle and replace it with titanium

Prothesis , she is now having to learn to walk again, I just thank god that she did not loose her leg, also she has been told it’s going to be a long journey to recovery she is cancer free they got clear margins, but this has really taken its toll not only on her but on us as a family as a whole.

So know what your lovely wife and family went through.

Good too see you looking so well.

Jean x

Hi Jean, , firstly I'm very sorry about your daughters thigh cancer. Thank goodness they've removed it with a good margin. I can't imagine how traumatic it is for her and you as her mum. They're always your kids no matter how old or what responsibilities they have.

Also it can be mentally harder in some ways for family members looking on and possibly feeling helpless or not knowing what to or say. And sometimes due to duress or despair the patient can be very impatient, I know I wasn't always the model patient. But allowances are made. And I'm sure your daughter is being supported and we'll looked after. I hope her recovery goes well.

When I look back at some of the pictures it's hard to believe it's me. Fortunately I don't have any from Mar / Apl 2016 when I was at my very worst. Maybe taking pics didn't seem wholly appropriate at the time.

Carry on being a Super woman Jean.

Regards - Chris x

Oh Thanks Chris, your kind words are much appreciated, it certainly has taken its toll on us all, but I for one am trying to be that Superwoman, I have to be for her sake and the grandchildren, she is a strong young woman and very determined, think she takes after me, and grateful that she did not loose her leg to it.

It really was good to see the pictures of yourself, you had so much strength and courage a true JEDI, and no way a reject. 😜

Jean x

Your daughter is in good hands with you as her Mum , I feel the Force is strong in you Jean. . Or in the words of Billy Ocean " When the going gets tough, the tough get going"

All the very best to your daughter going forward

Chris xx

Our Brave Jedi,surely now you are not a reject! Jedi fighter I would say.....not that I really know anything about 'Star wars'. I just know you are an inspiration to us all and for me personally a great hero and keep me going

thru the rotten days thinking of your battle and the strength and courage to get thru. Great pics Chris,showing the route you took.Very Best to you,the family and the one to come. !e -hugs, virtual French Bisous......can you believe all that kissing has been stopped & we are coping without it & have our masks on or heavily fined!!!xxxxSally.

JediReject
JediReject in reply to Inca

Ah Sally, , kisses are very much at a premium in the present climate and I fear for years to come as we change our greeting habits etc. Very sad indeed especially for a lothario like me 😃.

I'm pleased that I've maybe helped you along in some small way, it's very kind of you to acknowledge same. . If my story can help anyone in any way I'm a happier for it. I know my experience with Stage 4 Graft Versus Host Disease and my treatment regime has helped others in a similar position.

Regards - Chris xx

Loubprv
LoubprvVolunteer

Well you know what Chris, you’re a bloody marvel.

And I don’t say that lightly either. Heaven only knows what you’ve been through, with nary a moan - not only are you incredibly brave, you’re an absolute inspiration and I think anyone who’s followed your “ journey “ ( I hate that word it sounds so trite, a bit like “fighting” cancer, but I can’t think of another expression) will salute you.

Brilliant photos, and I hope one of these days that we get to meet if and when you visit the Lakes

At the moment the great ignorant, selfish, unmasked, unwashed masses have descended so don’t come anywhere near the place.

Cheek by jowl jostling along the pavements sniffing out their next pint or costa coffee. Looking for fresh air and green spaces they ain’t !

Anyway, it’s so good to see and hear from you.

Stay well and enjoy your wonderful family, they’re lucky to have you, in more ways than one.

Love

Louise

xx

JediReject
JediReject in reply to Loubprv

Hello Louise, always a pleasure to hear from you and boy do you make me laugh , you have a way with words. It's pretty much the same in Blackpool , a mass influx shoulder to shoulder on the promenades and Pleasure Beach. Worst thing is folk suddenly think it's fine to leave all their crap (literally ) on our beaches.

Thank You for bigging me up there , , as I've said many times I certainly wouldn't say I'm brave , sometimes you don't get a choice and just get swept along. I would say I was always up for anything that was asked of or thrown at me and didn't shy away even when it didn't sound like I was going to have a fun time.

The other thing that often came to my rescue is my sense of humour, which not everyone appreciates in a serious setting and at times it amused only me. But humour even black humour can be a saviour.

Yes it would be great to meet you I think we'd hit off and share a joke or two. I'm glad you like the various pics , I have quite a few but fortunately none from Mar/ Apl 16 when I was at my worst. I didn't even have the strength or the inclination then to take any selfies.

Steer clear o' them Grockles! 😃

Love - Chris xx

Loubprv
LoubprvVolunteer in reply to JediReject

Thanks Chris.

I know - it’s shocking the way people simply think it’s ok to maraud about as though the plague had disappeared. I spent my time leaping into the nettles the last time I walked round the lake. Now take to the fell where I don’t see anyone......morons. I have some funny cartoon things , I’ll send them to you.

xx

Loubprv
LoubprvVolunteer in reply to JediReject

Rats can’t find your email address.

Could you let me have it again please?

louisebroughton8388@gmail.com

Hi chris lovely to see your post and good to hear you doing so well enjoy your family and enjoy every day best wishes

Poppy

JediReject
JediReject in reply to Poppy6060

Thanks Poppy , , I try to achieve as much I'm capable of , I'm not one for lazing about though some days by necessity I need to rest up a bit. . Thanks.

Chris

Good to hear from you Chris. Wow five years, congratulations! Keep on keeping on 🥰x

JediReject
JediReject in reply to Jazzyb50

Hi Jazzy , , Thanks for your best wishes , I fully intend to keep on.

Regards - Chris x

Happy 5th Birthday to you and Garry 🎂🍾. You are an inspiration to us all. Xx

JediReject
JediReject in reply to mhos61

Thank You, ,there's no doubt that both Gary and myself can count out selves lucky and if our success inspires others in any way all to the good. ,

Mmm. . I'll have a slice of that virtual cake and wash it down with a virtual beer or two 🍺🍺

Regards - Chris x

crapaud
crapaud in reply to mhos61

Thanks for your kind message and thoughts.

Take care

Gary

crapaud
crapaud in reply to mhos61

Thanks for your kind wishes - life continues and it’s great to still be around.

Take care

Gary

Hey Chris... :-)

Great to see you and thanks for sharing your SCT Anniversary w/ all of us, and may the next Five (5) years be just as bountiful w/ more beautiful grandies...

I am most envious, w/ only the one child, (my beautiful daughter), and two (2) very beautiful grandchildren ... but I do not believe that I can see anyway soon where I might earn some more... (???) ;-)

BTW, we are having our virtual Zoom Cafe Catchup this evening if you are Free to join us Chris(?)

Not sure if you have received an 'Invitation' so please see below, and all are who might be also reading this are welcome of course...

Two (2) Meetings:

MEETING1:

Steven from MPN-MATE RF is inviting you to a scheduled Zoom meeting.

Topic: MPN-MATE RESEARCH FOUNDATION's Zoom CAFE CATCHUP Meeting

Time: Sep 5, 2020 06:00 PM Canberra, Melbourne, Sydney

Join Zoom Meeting

zoom.us/j/96005970137?pwd=U...

Meeting ID: 960 0597 0137

Passcode: 8Kc82z

(20 Minute Tea Break)

MEETING2:

Steven from MPN-MATE RF is inviting you to a scheduled Zoom meeting.

Topic: MPN-MATE RESEARCH FOUNDATION's (Pt.2) Zoom CAFE CATCHUP Meeting

Time: Sep 5, 2020 07:00 PM Canberra, Melbourne, Sydney

Join Zoom Meeting

zoom.us/j/98367423555?pwd=U...

Meeting ID: 983 6742 3555

Passcode: 1bMX07

Best wishes my MPN brother...

Stay safe & well & hope to see you around 9AM your time... 8-)

Steve

Hi Steve, , always good to hear from you. I too am hoping for the next 5 years to be even more fruitful in terms of achievement but I still have a few issues so I'll keep my fingers crossed on that one.

Apology for not joining your Zoom , I'm not even sure how to go about it but will endeavour to find out. I have a busy day planned with several small tasks and errands.

Keep up your sterling work , I don't know how you muster the energy for it all.

Regards - Chris

Hey Chris... :-)

No problem buddy... There's not too much to joining a ZOOM meeting... You really just click on the link and follow any prompts etc...

Anyways, maybe next time around (?)

Best wishes buddy stay safe & well...

Steve

Congrats, Chris, on your 5th Anniversary. You were one of the first posts I read when I joined in 2018. It was a picture of you in the waiting room at your doctor’s office. It was very inspirational. You really are a warrior and I’m so happy for you and your growing family.

I wish you all the best in the years to come.

Cindy

JediReject
JediReject in reply to Cja1956

Hi Cindy, I recall that post well because it was Feb 14th 18 aka Valentines day and we were at clinic in Manchester about 50 miles away from where we live. I'm glad you liked it. I think it was one of the first times I'd attended without using a wheelchair. It was one of my aims to eventually walk into clinic unaided, save linking arms with my dear wife on the way up to it.

Many Thanks for your best wishes

Regards - Chris

Happy birthday to you, squashed tomatoes and stew 🎶🎵🎶🎵.

So good to see your pics again Chris. You have done so well and you’re right, your sense of humour has helped you through. Way before your SCT you had me in stitches reading your posts. Enjoy every minute with your grandchildren and the ones to come. My daughters have stopped producing now. I have seven with the youngest about to start nursery. I feel a loss now, not needed for childcare so much, like when a child goes off to uni, (although none of mine did.)

I’ve just watched the Blackpool illuminations being switched on. I came when I was aged about 12/13. If ever I get back, you are first on my list for a meet!

Like you and Louise, Devon and Cornwall has been full of grockles, we also call them emmetts in Devon. It’s very scarey sometimes when venturing out.

Enjoy your 5th birthday with some jelly and ice cream 🍦. Much love to you and your dear patient wife Kate.

Judy xx

JediReject
JediReject in reply to piggie50

Hello again Judy, , yes I will gladly make you a luvvly cup of tea if you're ever in Blackpool. . I do a mean toasted tea cake too with real butter. .

I've not heard the expression Emmetts to describe tourists I shall research that one. It would be better if folk just stayed home fttb though I know it helps the local economy and they will spend freely after being locked down. ,

Gotta go got a large helping of jelly and ice cream to demolish. . .

Love Chris xx

Hi Chris, lovely to hear from you. Congratulations on your anniversary! 5 years have flown by. I’m so pleased that you are doing well now after all your problems following the transplant. Long may it continue. So many new grandchildren - you are blessed. We only have two but they give us so much pleasure. Take care, and best wishes to your lovely family.

Karen xxx

Hi Karen, , always a pleasure to hear fro you , I do wonder how you and your family are doing. We are indeed blessed with our Grandkids, we think the world of them and want only good things in their lives.

When I was quite poorly in hospital they allowed me a surprise visit from my eldest Grand-daughter Erin and the moment she came into my isolation room I cried with joy. She says stop blubbing Grandad I brought you a Grumpy from 7 dwarves, as she just been to Disney Paris. She's 12 now and a great kid.

Regards - Chris xx

Erin sounds a lovely girl. They make your heart sing don’t they? 😍 It’s been a strange year but hopefully a vaccine will be available soon and we can get back to normal. My first outIng after lockdown resulted in a fall and a double displaced fracture to my wrist. Being in hospital for an op in the current climate was pretty scary. It happened almost exactly a year after I fractured my shoulder so I am staying in bed for the whole of that week next year 😂 Take care Chris xx

Oh dear I'm very sorry to read of your fall and injury. OUCH !! . And bad timing to need an op too. , I would defo note your calendar for that week next year to be put in a padded room in a straight jacket. . 😂 (I always laugh at my own funnies) .

Yes our Erin is a great kid but growing up far too fast and we don't know how much longer she will want to stay at ours Friday / Saturday not that she has most of this year as yet.

I think tis you who should take extra care !! Xx

Legend xx

JediReject
JediReject in reply to Helen1952

Hi Helen mon Amie , you deserve a special mention in dispatches for supporting me these past years . , You mightn't realise it but you're like the pole star shining bright and you certainly illuminated my life. . Many many Thanks for all your timely messages which I never tire of. . . .

Your buddy - Chris xx

Helen1952
Helen1952 in reply to JediReject

Aw thank you and back at you for the only person who really knew what I was going through when I was in the hospital especially the irony of needing platelets which when I told the nurses you said it looks like mango chutney put them off their curries 😂

Xx

JediReject
JediReject in reply to Helen1952

I'm actually convinced that due to a national platelet shortage it really is mango chutney , , variety is the spice of life after all xx

Dear Chris!!

So wonderful to hear from you and to know that you’ve pulled through and are doing well. I’ve been thinking about you. Yes, life was sometimes scary, but you never lost your humour and we gave our support with lots of love and prayers. I’m so thankful about all your news! You are a beacon for many! Enjoy your growing family! What blessings! 😁

Anag

JediReject
JediReject in reply to Anag

Hi Anag , , yes I had lots of prayers zooming up to the heavens and I'm sure they played their part in my miraculous recovery. At one point I was literally skin and bone at 5 stone 10 lb with no strength left to get off my bed onto my commode without assistance. So all i can think is that the combined power of all my friends and family made a difference.

Regards -Chris

Anag
Anag in reply to JediReject

This is so wonderful! Hugs and all blessings! Anag

You were and still are an inspiration to everyone throughout both pre transplant and your very difficult transplant treatment. It is so good to know you are continuing to improve. Long may it continue.

JediReject
JediReject in reply to idi75

Hi idi, , Thank You for your kind acknowledgement , , I'm convinced my outlook had some bearing on my recovery. And if I inspire a single person in any way I'm happier for it.

Regards - Chris

Congratulations on this 5th anniversay and thank you for sharing your journey. Your positive approach is always an inspiration. I'm sure those grandchildren will be learning so much about dealing with life's challenges. How wonderful to see so many growing up!

JediReject
JediReject in reply to Bluetop

Hi Blue top, , yes the more the merrier when it comes to little ones though it can get a tad expensive. Though I'm a softy I do like to play the mean old grumpy Grandad but I always relent. Though my wife and I have 4 kids our Grandkids are the product of only 2 of our children . Whether the other 2 will settle down I don't know. You never know how life will play out.

Thanks for your congrats.

Regards - Chris

Ah so well done Chris - like everyone I will say goodness five years ??!! - you know it's all of that time tho as you and your lovely wife have dealt with all of that time - thanks for all the encouragement always provided by you as even during the hardest times you have always taken the positive approach for all of us when you have posted "despite all" and always shown care and interest in others on here - that old time principle of more happiness in giving than receiving seems to describe it - a fine principle but not an easy one to do when you deal with much and you definitely have dealt with big challenges to overcome - now it's time to enjoy enjoy enjoy family life and all those precious grandchildren - I think how lovely it is too for your wife after all the battles and caring support to see you doing so well and so it's time for you both of you to just now enjoy that family and life itself. Well done kid

Hi Helpatlast, , well you nailed it as I'm at my happiest giving , I'm not materialistic in that way and would much sooner give a gift than get one. And I guess that shows out in other ways .

And you are astute in recognising the role my good lady wife played in my recovery because without her unwavering care it could of been a different story.

And you kinda summed up our raisin d'etre which is to enjoy our time together and our family. Well done you !

Regards - Chris

Happy 5th!! You might be from the wrong side of the Pennines but you are an inspiration! Your anniversary made me think how long I'd had ET - too long - obviously!

The photos show how much you have recovered, also on the plus side, if you had committed a robbery four years ago they wouldn't recognise you now - if only you'd thought of it at the time. Seeing your grandchildren arrive is a big bonus and a marvellous incentive. We managed to visit our little granddaughter in Dorset last week, only the second time since she was born in October last year, (apart from via technology) we were due to visit at the beginning of lockdown. Big grandson, who lives here in Yorkhire, is due to start college - don't know where that time went. You definitely need a name change - Brave Jedi would suit you so much better. Bet wishes for the next 25 years! XX

JediReject
JediReject in reply to lizzziep

Hi lizzziep, it's amazing how those years sneak past you isn't it. . .

Pleased you've seen your Grandaughter , our latest arrival is 4 weeks and I'd love to cuddle her before she is 14 months !! They live in your neck of the woods so it might be a time before we meet her.

When I picked my name I was thinking of Jar Jar Binks if you know the character and it seemed to suit. Maybe it still does.

25 years is being a tad optimistic but I'll take it 😃😃

Regards - Chris xx

I wish you all the best Chris you deserve it all!

JediReject
JediReject in reply to krotsida

Hi Krotsida, , Thank you for your best wishes, very kind

Regards - Chris

Well done. Five years and it seems like yesterday. You have had a tremendous fight to get this far but have handled it brilliantly with an excellent sense of humour, which is so important to remain sane. I was lucky and had lots of low/medium GVHD items in my first few years but never went back inside.

You are right SCT is a challenge definitely worth taking, but must not be left too late.

I am sure you will remember Danny Turnbull who used to post here, and I think was the first ever Myelofibrosis transplantee wheelchair user. Sadly we lost him to another cancer after his successful transplant. This morning was Ride For Danny (an annual event) to raise money for the Backup charity (helps people with spinal injuries adjust to their new lives), something Danny was heavily involved in as well as supporting MFers. Many people cycled 100k but Lesley and I settled for 50k each on the roads in memory of a great friend. Bit sore but now resting.

Stay well and keep pushing up the averages.

Best wishes

Chris (the Princess Leia version courtesy of Sarah Gardner)

JediReject
JediReject in reply to MFBMT2011

Hi Chris, , Thanks for your kind response there it means alot. I took some inspiration from your good self too having been there and bought a tee shirt. Our routes were different as your MF was well advanced whereas I'd been 9 to 10 years with it. And as you point up he timing of one's SCT is critical.

Well done to you and your wife for completing 50k ride in memory of Danny, I was unaware of his demise and the circumstances. I envy you your fitness level post SCT.

I have a friend who had a SCT 9 years ago for aggressive rare Leukemia and her GVHD was a tiny red patch on the back of one hand. I love her outgoing nature and she laughed when I said to her " boy do I have GVHD envy" . If only I'd escaped so easily.

Put your feet up today

Chris

Wow!!. Five years, where has time gone. Even in your darkest times you always tried to put a positive spin on what was going on. Really felt for you and your family at times. But you pulled through and still around to see the grandchildren. As some one said in a different post - a legend!!. Jedi reject, no way. Jedi Master. Yoda watch out. Keep going my friend. It's an honour to share a forum with you.

JediReject
JediReject in reply to mark382

Hey Mark , many Thanks for your kind words and your empathy. As you will have guessed I'm a glass half full type of chap. I like to look for solutions rather than problems so I think my outlook defo helped me pull through.

I am touched by the sentiment of your parting shot. Cheers 🍻

Regards - Chris

Beautiful, inspiring, hopeful even if a bit of scary mixed in. Five years of so much sounds worth the price. Thx for sharing your journey for those of us just starting ours.

JediReject
JediReject in reply to Mollymag2

Hi Molly mag, , actually there was a fair bit of scary along the way, but as one of my very formal teachers in a very formal Grammar school used to trot out " it's character building boy" . . Well Id love to tell him that i'm not sure it is.

It is definitely worth all the ups and downs but for anyone starting out and maybe needing the same in future its worth remembering mine was an extreme case of GVHD so on one hand I was unlucky but overall extremely lucky.

Regards - Chris

Hi Chris. I really think it’s time you changed your name to Jediwarrior! They couldn’t possibly reject you after the fortitude you have shown over the past difficult years! I find it hard to believe that it all started five years ago

As you have often said grandchildren are a strong motivation to keep going. I also take my hat off to your wife who has been through all the trials and tribulations with you. Sometimes it’s harder to watch a loved one suffering than actually going through it yourself.

It is so good to see you really coming out the other side now. I seem to remember playing around with a photo of you and giving you an orange Scottish wig. I didn’t know you’d take it although I’m pretty sure you would have laughed. Alas my computer skills let me down and I didn’t make a very good fist of it anyway!

So here we are five years later and I’m still waiting for my cure. I still believe there will be one one day but who knows when?

It’s funny how I consider you a special friend even though we have never met. Long live this forum as it is so supportive

Take care my friend and enjoy life to the full. I Know you will. Very best wishes, Jan xx

JediReject
JediReject in reply to beetle

Hi Jan my long time friend, , Thanks for your considered response I too find it hard to fathom how 5 years has evaporated so soon. . Thanks also for acknowledging my rock of a wife in my recovery. You're right it's oft harder for carers, loved ones watching you suffer and feeling helpless. My wife always said it would either make us stronger or drive us apart. Fortunately for me she is still by my side as she is a remarkable person.

I used to have one of those wigs attached to a Tam o' Shanter it was an orange colour. I would have found it hilarious if you'd doctored my pic. I love that sort of thing. 😂😂

I'm sure as medical,science advances they will find a cure but please don't give up hope in the meantime.

Well Jan I was starting to enjoy my life much more and guess what it was scuppered by something called Covid 19 , , another of life's little ironies that seem to dog me. But once it hopefully burns itself out or there's a vaccine I will get straight on to living it large.

Regards - Chris xx

It’s so good to hear from you, Chris! I’m thrilled to hear that you are doing better and congrats on the grand babies! As you mention the support from this group helping you out in your darkest times, don’t forget that you have been of great help and encouragement to many of us. Stay safe and break out that Light Sabre! You have earned your place in the Realm of the Jedi!

~gail~

JediReject
JediReject in reply to buddin11

Hi Gail, , Thanks for posting your congrats , , we are very blessed with our future generation tally, our latest addition a wee girl , tiny at birth in comparison to her siblings at 6lb. But she is simply beautiful.

As you know I don't comment too much now unless I feel I can add value, partly me moving on in a way and partly coz I've lost touch with the latest MPN drugs etc so some posts might as well be in another language for all the sense I can make of them.

I actually have a replica of Yodas light saber so maybe I will thrash a few droids to pieces later as a treat.

Regards - Chris

buddin11
buddin11 in reply to JediReject

Hahaha! I love it!

Glad to hear you are faring well. Your approach is inspiring. You exemplify what Yoda says "There is no try, only do." You would make a great Jedi!

Hi Hunter Thanks for the compliment. . I shall take your recommendation to the Jedi council but I think they might spot my fake Lightsaber which takes 3 x AAA batteries 😁.

I have read a number of your supportive posts and find them very informative and I'm sure they help the recipient. The Forum is all the better for members like you.

Regards - Chris

Well done. You've gone through so much. Best wishes.

JediReject
JediReject in reply to JP1952

Thanks for your best wishes JP1952, ,suffice to say ive not had the easiest of times battling my GVHD but Thankfully the worst seems to be well behind me. .

Regards - Chris

Congratulations on your 5 year anniversary. So pleased all is working out well for you after your 'battle'. All the best you brave Jedi. Lots of love x

JediReject
JediReject in reply to nivana

Hi Nivana , , Thanks for your congrats and best wishes. . Think I've reached a plateau in my recovery but that's good enough for me 😊

Regards - Chris x

So glad you are doing well! Hope is something we all need. Thank you for sharing!

Julie

Hi Julie, , yes Hope is important and even when I was very poorly I never lost hope of getting better. It worked !!

Regards - Chris

Hi Chris, lovely to see your anniversary post. Wow 5 years!!

3 plus years ago when I joined the forum, SCT as a treatment was not on my radar at all. Reading your posts from over the years were invaluable to me.

I am looking forward to reading many more anniversary postings from you. So do keep posting!

Thanks again for your support with my SCT. Best wishes, Simon

JediReject
JediReject in reply to Simon96

Hi Simon, my biggest fear in reporting my SCT developments was putting someone off doing it. But as I keep bleating on about mine was an extreme case of GVHD (Stage 4 of 4 stages) . I overheard one of my nursing team say "Poor devil Chris, he has stage 4" That didn't do my confidence much good at the time.

Anyway I'm pleased that you were able to take some positives from my ramblings.

Hope you're continuing to do well.

Cheers - Chris

Congratulations on your 5th Anniversary. Congratulations on the extra Grandchildren.

Thank you for sharing your story, it always is a fear in the background that hubby may progress and head in that direction but try to live without worrying. He's had kind offers for donation from family when he was originally diagnosed with ET/PV & then at each stage as his bloods get less stable. I've always felt it might be a very difficult decision to go down that route but am heartened that you advise to not give up hope.

I'm hopeful we don't need that route but much less scary when people scare their experiences. So thank you and well done xx

JediReject
JediReject in reply to Chaz1

Hi Chaz, I too hope your hubby can be treated with meds for a long time to come. You're right to feel anxious about such a huge decision as SCT should you both be faced with it , lots of factors come into play.

In 2007 I was told by an 'expert' that I would need a transplant within 3-5 years , this figure of 5 years stifled my life thereafter until 2012 came and went and I was still managing my MF. I was so cheesed off that I'd fretted and held back just in case. Since then I'm a great believer in not crossing or starting to cross a bridge until you actually arrive at one.

What I would say is that you enjoy the here and now as best you can and try not to worry too much about what might be. Good luck to you both going forward.

Regards - Chris x

So lovely to see your post and so glad to hear you are doing so well. You will always be an inspiration to me. From the first time I read your posts when I joined in 2012 when first diagnosed your courage and positivity through such difficult times is amazing. Congratulations on your 5th anniversary Chris. All the best to you, your fab wife and family. Lizx

JediReject
JediReject in reply to Liz001

Hi Liz, gee has it been so long since we joined the Forum. . . There are names I see and think oh we joined around the same time and yours is one of them. Thanks for your kind words and your description of my 'Fab' wife as she is just that. I'd never of made it without her by my side throughout though not easy for her at times when things got a tad hairy.

Regards - Chris x

Mazcd
MazcdAdministrator

Chris, congratulations, you are indeed a marvel and thank you so much for sharing your journey with everyone on this forum and for being so open and honest about everything. Maz x xx

JediReject
JediReject in reply to Mazcd

Hi Maz, , Thanks for your kind response. . I tend to wear my heart on my sleeve so I guess my being open and honest shows through. Though I was always mindful that I didn't want to put the fear of God into anybody considering or facing the SCT route. So I aimed to strike a balance, hopefully I did mostly.

Thanks for all the sterling work you've done for us all these past years , part of the success of this Forum is a direct result of all your efforts.

Regards - Chris x

Mazcd
MazcdAdministrator in reply to JediReject

x x

Hi Chris. So glad you’re doing so well, I’ve been thinking of you. Your photo won’t come up on my phone but I’m sure it would have made me smile. I got a new granddaughter last week, her name is Olivia and she’s gorgeous. Stay well. Love Mel xx

Hi Mel , , longtime no chat . . , allow me to Congratulate you on the birth of your Grand- daughter Olivia, a beautiful name which I really like.

My photo is actually a collage of about 10 thumbprints taken at various stages including a very whiskery faced selfie I took a few days ago. , might of cracked your screen had it popped up. I used to be quite handsome.😂😂.

I hope you're keeping well and get to spend a little time with Olivia, and have a wee cuddle. I'm desparate to see and hold my son's latest addition whilst she is newborn. It's a fantastic feeling to cradle a tiny new life in your arms.

Regards - Chris xx

Happy ReBirthday! Congratulations!

Hey Lucy many Thanks, , I was planning a 'bit of a do' to mark my 5th re-birthday but Covid put paid to that sadly. I hope it doesn't do the same for my actual Birthday in the New Year.

Regards - Chris

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