MPN Voice
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ONWARDS AND UPWARDS !!

ONWARDS AND UPWARDS !!

Hi Folks , I know it's been a while since I posted an update for those of you who have been following my progress both before and after my SCT in Sept 2015, (was it really so long ago?). Things continue to creep on by degrees in my on-going battle with my GVHD buddy. But I can tell you of a couple of very recent milestones.

The first is that last wednesday I had one of my steroid induced cataracts removed and the immediate result is very promising as I can see the world in all its glory with vibrant colour which I had forgotten existed in my dull grey world of many months. What I can tell you is that if you need cataract surgery there is nothing to worry about though I admit had I not gone through the numerous procedures I have I would likely of been bricking it. I have to wear my patch for a month and put drops in regularly.

The other milestone is that I have stopped my Extracorporeal Photopheresis - ECP. I have been on it for 2 years and it's effectiveness has reached a natural end. So next month I will likely have my Tessio Line surgically removed. I will miss it because it's been part of me since 2015.

Apart from that I'm gradually gaining weight and strength but have my limitations. "It's life Jim but not as we know it" . . BUT IT'S LIFE 😀.

THANK YOU FOR ALL YOUR SUPPORT , Be assured it has made a real difference.

Chris x

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Glad you are ok make sure you keep up with eye drops

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Don't worry I will. It's critical with GVHD in my eyes as they are extremely dry. Thanks for the advice as it'd easy to think I'll stop now it must have healed. . .

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So good to hear from you! I am Day +30 post SCT today!! Still very weak, and having some skin issues, but can’t complain too much. So glad you’ve had a positive step for a change!

~ gail ~

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Gail, , well done for going down the SCT route. Hopefully you will get only modest GVHD to confirm your new Graft is doing its job and it won't be long before you get your life back together. It goes without saying but if you have any questions concerns going along please ask and I will help if I can. Good Luck. . . .☺

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Good for you Gail. Currently have a buddy in Australia who is 10 days behind you and also doing okay.

Best wishes

The other Chris,

Myelofibrosis SCT 03/2011

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Oh so well done Jeds proud of you - two milestones indeed and progress however "small" is indeed significant - you've shown such courage and fortitude throughout never missing an element of humour in all you say - good on you kid you are a great example to all - but just delighted that you have some nice progress - well done Chris - Jill

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Many Thanks Jill, , you don't always realise how far you've come when your journey is long arduous one. OK I would of preferred to have taken 18th or 2 years out of my life to gain a future, but it takes what it takes. I've had my down times where humour was a dirty word, but I've tried hard to remain positive and I've had a good few laughs along the way. Cheers . .

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Hello my friend! So wonderful to hear this good news. Onwards and upwards indeed! Lesley x

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Yes Lesley , Thanks . It's good to take a couple of real steps forwards x

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A bit of light at the end of the tunnel! Speedy recovery Chris.👍

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There was certainly a light at the end of the tunnel when having my cataract out, a very surreal experience. Thank You . . .

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You are getting there Chris - knew you would!! Hopefully anyone who is newly diagnosed can take inspiration after seeing what you have gone through and how you have come through it! I wish I had half of the courage you have shown. Please let us know how you are getting on from time to time and best wishes to your wife and family too.

Kindest regards and E Hugs to you both from Aime xx😺😺

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Hey Aime, I'm sure you have courage in spades. I think it has shown me that I do have mental strength and reserves I never knew I had, having been at the edge of a precipice a couple of times. I think you had more faith in me than I did at times so Thanks for that and your support , not just to me but to the many you've helped. X

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Hi Chris. So glad to hear that things are improving for you, even if slowly. You're right the world is a lovely colourful place, so now with summer around the corner ? (or so they say!) enjoy the flowers etc.! I find it so hard to believe that it was 2015 that you had the SCT - I hope that the good lady wife, your grandhildren and your very benevolent sister are all doing well. Good luck and God bless. Janice

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Aye Janice all those months ago, hard to believe. My wife is still my rock and I owe her my life because I'm not sure I would of made it without her by my side throughout. My Sister is well thank you. And we have a new Grand-daughter born the same day as my op so that makes 6 now and I plan to watch them grow. Take care ☺

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Hi Chris, grandchildren are such a great medicine if you are feeling sore and a wee bit sorry for yourself. Aimexx😺

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Sorry that came out wrong, I didn’t mean that you were feeling sorry for yourself! Porridge brain speaking! I meant the grandkids have made me smile when I’ve been sore, etc. Aime xx😺😺😹😹

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Oh no you're right , I get a real boost from seeing ours. Good to have some young energetic life about the place, though it was hard to sometimes appreciate when I was really poorly. But they are nature's tonic x

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Really great and more - to hear from you again and delighted that progress is happening and light definitely at end of tunnel. Lovely news re 6th grandchild and bless happy grandparents; well done to brave you and to brilliant wife. You are a shining example always with your lovely humour, your courage and should like to award you the first MPN knighthood, if Maz is o.k. about that! Very best wishes to you and your 'rock', Tinkerbell xx

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WOW Sir Jedi Reject , , hmm got a certain ring to it Tinker bell , but I ticked the 'no publicity ' box on the form 😉. We're made up with our new Grand-daughter, she is a beautiful baby. I hardly dare say it but I think there is light peeping through ahead. And my lovely wife and I need to catch up on the many years we've put our lives on hold.

Very best wishes x

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Delightful re this beautiful and precious new Grand daughter and may this be 'new beginnings' all round, for you and your super wife, of better and better health and happiness. By the way, rather decided 'Lord and Lady Jedi' sounds rather good, too! Tinkerbell xx

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Hello Chris . Just really lovely to hear from you,As always take care Bye Gill .

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Cheers Gill , gee we've been on this Forum a fair time but always a pleasure to hear from you. Kind Regards. . .

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Good Evening Chris......onwards and upwards.....you are amazing,so good to see your post,Spurs me on and I am sure every one else on this site too.Very Best to you xxxxxxxxxxx!Sally

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Well Sally we spur one another along as members of an exclusive club that no one really wants to join. The support I have had is nothing short of admirable. If my experience helps just one bod I'll be happy . .xx

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Legend xx

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You flatter me Helen, back at you my friend ! X

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You're a star Chris...Bless you xxx sally

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Hi. Couldn't resist replying as ‘Onward and upward’ was my school motto. I met you briefly at the London forum at the end of 2017. Glad you have had cataracts sorted and are finding life worthwhile. All the best.

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Hi Rachel, thanks for replying as I know you have on-going issues to deal with. I think you have me mixed up with a much better looking guy as I've not attended a Forum but would like to. Yes it's truly amazing the immediate difference the first eye op is making to the quality of life as I couldn't see very much at all, Steroid induced cataracts are much thicker than the norm so reduce vision considerably.

All the very best to you in what you're dealing with. Regards. .

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Well done, you have had a tremendous battle with gvhd for quite a while and despite some nasty conditions keep bouncing back up. Not everyone experiences gvhd to the level you have, you have been particularly unlucky. You are right in your statement that it is sometimes not life as we know it but it is life! And it is undoubtedly worth it.

The other SCT Chris

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Hi Chris , worth it indeed. I take my hat off to you for electing to go down the SCT route early on in your diagnosis and for all the help you have given fellow transplantees including me. You are right to point up that my GVHD experience is not the norm, there are but a few of us at clinic out of many with such a severe reaction. But much work is being done to pre-emt the possible impact of GVHD so hopefully there will be fewer cases like mine in future.

Take care buddy and "live long and prosper". . .

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an inspriation you are to us lesser mortals

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Well my resistance to go over to the Dark Side has been tested a good few times but I've always turned to the light . . . .

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Great to hear your good news Chris. I think about you and your family often, wondering how you are doing. I’m so please your op was a success, and it must feel very strange to have your line gone after all this time. I can’t believe it was 2015! You are amazing and give us all hope for the future. Enjoy those gorgeous grandchildren. Love to you and your family. Karen xx

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Hi Karen, I too think of folk on here that have been around for a time as I do check in even though I haven't posted much but my vision was down to 25-30% as a guesstimate. So to be able to see is nothing short of a miracle to me. I couldn't see facial features so my Grandkids have changed a bit and even my dog looked different. I know it sounds silly but that's how it is. Kate said I hope you still find me attractive when you can see again as you might wznt trade me for a younger model, but she was more beautiful and I know when I'm on to a good thing.

I can't wait to see our latest addition to our family and that makes everything worth it.

Much love back to you and yours. X

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That’s fantastic Chris, your grandchildren must be thrilled to know you can see them properly again. What a lovely thing to say about your wife, you old romantic. We are lucky to have such caring other halves, I don’t know how I would cope without Alan. Look after yourself my friend xx

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Fantastic news, you are doing so well. Don't you get a free parrot to go with your eye patch? Must be the cutbacks! You can even see the the colours on the jockeys in the Grand National now.

Love your phrase about grandchildren being natures'natural tonic' - just right.

Stephen. ET, PFMF, plus mastocytosis.

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Hi Stephen, made me laugh there , I must say I thought my eye shield might have been secured by something other than a face full of tape, but most folk wear them for a short time only, but I've to wear it for a month. I can see proper good bright colour for the first time in many many months and it feels like a new world around me.

Good luck with your conditions and I hope you are keeping as well as can be. Hopefully some decent weather is round the corner for us all to enjoy. Cheers . .

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Hello Chris,

So good to see things are improving for you. Funny you say that Sept 2015 seems a long time ago - my SCT was a fortnight before yours, on one hand it seems a 'life ago', on the other I remember like it was yesterday !

Anyway, keep up the good work and so good to hear from you.

Gary

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How true Gary, I can recall those weeks on the Ward mind you I dropped lucky with my nursing team of mainly young lovely lasses always cheery and helpful. We've both come a long way and got alot of life to live yet.

Best Wishes to you my friend , keep on keeping on buddy.

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Chris I am so full of admiration for the way you have coped with all that’s been thrown at you. I guess as long as you can see even baby steps forward it is encouraging. I hope they find out soon why some people sail through transplant and others get the whole book thrown at them. I guess we are lucky that there is so much research happening for us orphans at this time

I have recently learned that I have no new genetic mutations 😁. However they are just trying to sort out a recently discovered vitamin D deficiency that I consulted Dr Google about and wish I hadn’t! I have left it in the hands of our GP practice’s resident pharmacist to do the research into treatment as I’m guessing he will have access to more info than I do. Neither my GP nor my haematologist really knew how best to treat it. The deficiency could be responsible for my bone pain and the dripping head sweats that I get so I’m hoping to become a new person soon🤔😂

I am so pleased that you can see better now. That must make a big difference as I know how I feel when I’m not wearing my lenses or glasses and the world is a confusing place. All I have to do though is reach out for glasses/lenses. As you might remember I used to work with visually impaired children and fully understand how challenging life can be with poor vision

At the end of all this you know you will have to change you name from Jedi reject. I don’t believe you could be called a reject by anyone after the bravery you have demonstrated throughout all this. So my friend it is onwards and upwards for sure and let’s hope the upwards overtakes the onwards very soon

Take care and very best wishes, Jan x

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Hello Jan, yes I recall your working with the kids and how you appreciated the challenges significant loss of vision brings. And is a mystery as to why some get very modest GVHD and their Graft settles in nicely and in others it goes into overdrive and sees the recipient as a foreign invader to be repelled. And my Sister and I are a ten / ten match. Hopefully further research will help future transplantees.

Interesting about your vitamin D deficiency , I hope you get a result there and reap the benefits.

Thank You for your kind words Jan, I did consider changing my name but didn't wish to tempt fate, mind you I was born on Friday 13th so I don't think I've owt to fear. Regards Chris x

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Wow it’s Chris it’s so good to hear from you x

And by sound of it you soon will be up & Running

The GNR maybe 😜

No seriously it’s made my morning seeing you , 👀

your such a positive Fella all you’ve been through ,

I’m wishing you a speedy recovery

Goodbye for now & take care

Pam x

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Hi Pam, always a pleasure to hear from our running lady, I'm making progress but the only way I'll be doing the GNR is as a passenger on your back. 😉. I do hope you are managing to get out for a jog though it's been a long Winter.

Very bestest wishes x

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Great to hear you're finally seeing some improvement Chris! As you say, onward and upward! Keep well Jedi Reject x

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Hi CT , Yes a long haul and when I'm finished I'll be like the Bionic Man , it's cost a few quid but not quite 6 million dollars !! You keep well too x

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So lovely to hear from you Chris. Like many on this forum when we don't hear from you we do wonder how you are.

Scrolling through the replies you have received shows the esteem in which you are held. Think we should all band together and put your name forward for an MBE for services to MPN patients. You have helped so many to forget our niggling side effects and get on with life.

Here's hoping you go from strength to strength now. Regards Sue

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Thank You Sue , I know like many you have been a member of the Forum for some time and it has grown and 'grown up' since its inception. I'm very sorry I've been AWOL for periods of time but have always kept an eye on what's going on. There are some truly unselfish peops on here always willing to lend a shoulder to lean on so to single one out would be difficult. I think our strength lies in our unity for the common good. Certainly worked for me. ☺

Keep well Sue, good to hear from you . . .

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Good to see you have had your first cataract done,the first thing my husband said when he had his done was just how green the trees and grass were plus it made so much more difference to his night driving does not get dazzled by the headlights anymore, the only thing is he has to wear sun glasses a lot more often now even in winter, he was not one to wear them in the past, so think it was the sun that did the damage when he was abroad for work.

From your post it looks as if you are gradually getting your health back, slow but sure, and considering what you have been through having cataracts done is a breeze, and on a plus side your vision will now be so much better.

And Chris, as for our support, you have also supported all of us through our journey with our MPNs with your words of wisdom kindness, plus your great sense of humour, so Chris, it might not be life as we know it, but you are certainly part of it.

Jean x

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Yes Jean the difference it has made to me is phenomenal, as my cats are much thicker than most (they bloody would be !!) So my sight was very poor , even close up I couldn't see peops faces. Unlike your hubby I'm quite used to wearing my shades, I had to get some moisture chamber ones from on line provider Eyewear Accessories they have an inner liner to keep wind out but aren't cheap. Good though.

Thanks for your kind words Jean, a problem shared is one halved. . X

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Mind you Chris, when You quoted from the Trekkies song. It tickled me, was going to say.

On the star ship Enterprise under Captain Chris! Star trekkin across the universe, only going forward cause we can’t find reverse, and so on, is so true in your case.

Jean x

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Hey I'd forgotten about that bit , I recall it was latish 80s by The Firm. . . Darn good job it wasn't 'it's worse than that he's dead Jim , dead Jim.. . . . " 😃x

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Hi Chris,

I’m a bit late to the party on this post as on hols in La Gomera. I’ve had a few health issues this year that I’m in the process of resolving so was glad of a week away with a good girlfriend for some relaxation, good food and good wine in the sun.

It’s always a pleasure to see a post from you. I think of you often. I’m so glad you have had your cataract done I hope you can continue to improve, then move on to the next thing!

Lots of love Chris,

Judy xx

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Ah Judy , , I wondered if /when you would come out of hiding as you are a stalwart on the Forum. Let me say that I'm sorry you're having a rough year thus far let's hope that after your time away things are picking up because you don't deserve I'll health. I'm glad you managed time away to relax, let's hope we see some sunshine here soon, it will do us all some good.

Next goals for me are , have my Line removed, visit dentist (now I can mobilise onto the chair and lie back), get my other cataract out and try to walk further .

Take care my friend and I do hope you keep well. X

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Great to hear the news, sounds positive if only moving along slowly. All The Best.

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Thanks Paul . I'm happy with baby steps so long as I'm moving forward though it's a far cry from my former fitness level. I do hope you're doing better with fewer bumps (or potholes!) along the way. Take care buddy. . . .

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