Hi Forum Friends , , I had notification of a new follower on here today and I realised how much time has elapsed since I posted an update. Time flies when you're enjoying yourself eh.
As you will no doubt have guessed by now I'm a Star Wars fan , I even put my religion down as Jedi on one or 2 of the many surveys I've been asked to fill in. But for me there are many parallels to be drawn between fiction and fact.
I see The Force as life itself and I'm pleased to say again that I'm enjoying living it albeit still with some limitations. For those of you who 'know'me and supported me through my hardest times over the past few years you lovely people helped to get me to this point and I THANK YOU ALL from the bottom of my heart for that.
What I'd like to say also is that recently I've had a number of things going on that made those hard times worthwhile and re-affirmed my decision to opt for SCT in 2015. They're not earth shattering events simply family things like taking my Grand-daughter to the park and being there to accompany my elderly father to a couple of hospital appointments. And going out for a drink with my lovely wife.
In myself I'm in a fairly good place mentally I think , , half the battle of SCT goes on in your head and it's easy to become depressed when you're physically weakened.
My Graft Versus Host Disease is still active and I'm still taking a small dose of immuno-suppressant. My eyes remain very dry and troublesome and I've recently been to Liverpool Blood Donation Centre to give a pint for my next batch of blood serum eye drops which help a little. I'm struggling to put weight on but since I stopped Ruxolitinib many months ago my appetite fluctuates. Mind you I've always been a eat to live person. I tire easily but can do light jobs and potter in the garden. My mobility isn't brilliant and I use crutches to propel along, I also have a small mobility scooter which is great.
I attend blood clinic at Manchester once a month which is much more manageable than twice a week !!.
So that's where I'm at. I'm happy with my life as it is because as I've said before , it's life. So please keep fighting your own personal battles and May The Force Be With You All.
Kind Regards - Chris
PS I read recently that a UK arm of the Mayo Clinic is to be opened in London I think but I don't know any detail. I guess it will be private health care.
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Hi jedi,nice to hear an update and you enjoying those small things that we all take for granted sometimes! May the force be with you chris for many years to come. Best wishes,tina.🤗
Thanks Tina , , I too hope for good times ahead but I'm well prepared to face whatever life throws my way. And will continue to take pleasure from the small things. Regards.
Well hello my friend. Looking fabulous I have to say!
I am so pleased to hear how well you are doing - even if a little knackered eh? And I am with you on one thing - life IS life! Enjoy yours my friend. Lesley x
Hey Steve , , if anyone is an inspiration it's you my friend with your cycle challenge and the kilometres you're eating up in the lead up. Competitive cycling is something I've always wanted to do but alas I was born in the wrong body for it, though I might have made a good jockey 😉. . Message you soon mate .
Well I could say that it is me that was born in the wrong body and you in the right one... Cycling is all about physics really, and the lighter (more jockey-like) physiques the better really... I have lost loads of weight since this whole thing started. However, I am aiming at another 10kgs before post time next year... A long ways to go yet Chris...
Actually, my MPN does not protect me from the cold, and I have not actually ridden now for just over three (3) weeks but that is all about to change as of this AM as I venture out somewhat timidly with an old Yorkshireman just returned from the old country after 6 weeks in Europe...
You are looking great Chris, and my grandkids are such a joy too...
Hi Chris, you are looking so much better - well done! It’s great to see you and hear that you’re managing to do more. That wife of yours is whipping you into shape! Outings like taking grandkids out are so important for both you and your granddaughter and for me with my two rogues such a privilege. We’re so lucky to have grandkids and they certainly keep me going. I think your attitude has been so important in your recovery and your strength amazing.
Keep up the good work, sending E hugs to you and your family. Love from Aime x😻😻
Hi Aime, , thanks for your kind words. Grandkids are great and I love playing silly games and winding ours up, , honestly I dunno who's the bigger kid. I'm really enjoying being a hands on Grandad as I couldn't even hold my new born Grandson 3 years ago. .
Aime you help so many peops here so I would say to you please keep the good work ..
It’s so good to hear from you Chris, where has that time gone!? I’m so glad you are managing to do everyday family things. You are so right, ‘it’s life’ and we are all lucky to be here.
Hi Judy, , it certainly doesn't seem nearly 4 years since you kindly wished me good luck as I was about to take the biggest step of my life. I have total respect for you both for all the support youve given me and as one of the stalwarts of this Forum. Thank You. X
Yes, we’ve ‘known’ each other a long time. Long may it continue! I remember when I first joined this forum 7 years ago your wit and wisdom always cheered me up and made me laugh out loud. You have a very rare talent Chris. X
Hello Chris, Always lovely to hear from you , No matter how difficult things can be at times you smile and encourage everyone. Our son has been home from Melbourne and had his 50th birthday with us , thankfully still keeping very well. As always take care Love Gill x
Hello Gill, , and always a pleasure to hear from your good self. . . As I think I've said before I'm a glass half full guy, , I'm one of those who wears their heart on their sleeve , not obvious I know 😂.
I'm so pleased your son has celebrated his milestone birthday with you , , I'm lucky my son lives a 2 hour drive away. You never stop being a parent do you no matter what their age and status.
Hi Chris it is so good to hear how you are getting on. Like you I read the posts but very rarely put anything up!
It is so good to hear that you are managing to get around a bit, you had such a long hard struggle for so long, but you persevered, and with the help of your good lady wife (as well as all the medics!!) you came through the other side. I do hope that she, and the rest of your family are getting on okay.
Your words of wisdom always give out a positive vibe, and that is so important for us all, to remain positive.
Chris, I wish you all the best going forward -I'd like to say "to infinity and beyond" but I know that is from a different film, (haha) - anyway onwards and upwards.
Hi Janice , , To Infinity And Beyond is fine by me , , I love that line in Toy Story one where Buzz Lightyear claims he can fly and glides away bouncing off numerous obstacles if I recall it right, and possibly Woody says " That's not flying it's falling with style" or something along that line. Well I've fallen with style a number of times these past few years and it seems landed on my feet.
My rock and I are doing fine Thank You. Our experience either breaks you or makes you and though it's been a strain I'm happy to say weve survived it. .
As you say onwards and upwards. Best Wishes to you and yours . .
Hi Chris, it’s great to hear from you, and too see you smiling face, as I expect a lot of people would say you look really well considering what you have been through the last few years.
Your attitude to life is inspiring to say the least, but to be able to take your grandchildren out and about is a great achievement.
“You always look on the bright side of life” 🤪 such a positive influence on us all.
Yes Jean to simply accompany my Grand-daughter to the park with my faithful companion (not my good wife but our aged Staffy) is indeed a blessing and something I never thought I'd be able to do a couple of years ago. I always believed I would come through the SCT but I didn't bank on the level of suffering I would need to endure from the severe reaction afterwards. At first I thought why me but as things ramped up I began to think why not me I can beat this thing. Strange but true.
As Eric Idle penned 'Always Look On The Bright Side Of Life. . . Life's a laugh and deaths a joke it's true' . .
Lovely to see your post and hear how things are with you and yours. Glad the force is still there with you. You continue to be an inspiration for us all. All good wishes Lizx
Glad to hear you are living life to the fullest. When I first joined the forum about 6 or 7 months ago, you were very supportive and I learned a lot about your struggles. Thanks for checking in and letting us know you are all right. You inspire us all.
Thanks Cindy , , it's sometimes difficult to decide how much detail or fact to divulge as the last thing I would wish to do is scare anybody witless or discourage them from going down the SCT route. But I've tried to be as open and honest about my experiences as I feel I can be in the hope that it will give heart to others who might have doubts about whether it's right for them.
Nice to see your update. Little things can give so much pleasure. Behind you in the granddaughter stakes as our first is only three months. Survived my first solo babysit last week.
Keep up the good work fellow SCTer. SCT affects us all in different ways but is the only cure so worth it. The prize is life.
Still plan to meet you. Take care and keep enjoying those little things
Chris - the Princess Leia version with cells from Anthony Nolan courtesy of Sarah Gardner.
Well Chris I'm very impressed at you flying solo in the baby sitting stakes. . Not that parenting skills ever leave you . . Our eldest Grandchild who I accompanied to the park is 11 and starts secondary school in September. Scary. But we have several younger ones to keep us busy. If I hadn't opted for SCT I may not have seen 2 or 3 of them so the prize isn't just my life but being in theirs too.
Hopefully our paths will cross one day , it will be an honour to shake your hand.
Hi lovely to see your post and good to hear you doing well and getting out and about you do so well and keep us on this site positive have a good day best wishes Poppy
Thanks for your kind words Poppy. I've never been one for resting on my laurels and found it so hard when I was immobilised and nailed to my chair for nearly 2 years, so now I can get about a bit I'm like a dog with 2 tails !!.
Thanks for that Ebot . . I like that expression about life's pendulum , don't recall hearing it before. I too am hoping to maintain an upward swing. I will try to post a little more regularly. 😉. Regards.
Thanks Jilly , , lovely compliment. . Is that your wee Westie I can just see in your profile pic. . They're lovely dogs , a nice manageable size. . I hope you're keeping as well as can be , , we're all fighting one way or another. Regards x
Aye you're right Mary and because I like to respond and have a wee chat with each one it takes me all day to do it, , but I enjoy reading them , , I just need to be careful my head doesn't swell too much with all the complimentary replies 😆. Actually it's good for my eyes as tears well up, (real men don't cry though do they). . Love to you and Yours too x
Hello again Chris. I often wonder how you are getting on but do not wish to be intrusive and keep asking for updates! I think I told you about my mobility scooter envy - it hasn’t gone away! I have been on an 800 cal a day Mediterranean diet and lost 30+ pounds (I had it to lose!), normalised my cholesterol and blood sugar and shrunk my spleen by 1cm!! I have also reduced my ALT down from over 200 to 68 at last count. I am feeling quite chuffed with myself😀. I am sticking to Mediterranean eating style but with more calories now. I have also been sticking religiously at the iron chelation and now ferritin is 5020 rather than over 11000. I know I’ve still a way to go but I’ll get there.
I am feeling very motivated to take my health into my own hands a bit more by family events. My youngest is getting married next year hopefully and my gorgeous granddaughters are growing quickly. I need to be around as long as possible to watch my family flourish
It is good to hear that you are doing well and happy with the outcome of you transplant. I know it has been a rocky road but the alternative is anything but smooth!
Keep doing well and may the force be with you my friend! Best wishes, Jan x
Dearest Jan , , never worry about intruding into my world, I would welcome a nudge. Hey hats off to you and massive respect for your weight loss and healthy med diet regime success. And your honesty re had it lose. The main thing is youre tackling it head on and getting stellar results thus far , no wonder you're chuffed to little mint balls. The forth coming wedding is a great spur on.
I also wanted / want to see my Grandkids grow up and hopefully help their development in some small way. So I aim to be around a long time yet as the youngest are 1, 3, 4 , 5 and 6. . And I have an elderly father who needs support to maintain his independence.
I owe him that much as he has supported me in more ways than one over the years since diagnosis.
Keep up the impetus of your health drive Jan I'm confident you will achieve your goal.
My very best wishes to you , message me anytime. Regards x
Hi Chris, so good to hear from you! Very happy to see your force is still strong and life is blessing you with moments of joy. It's good to be reminded to appreciate all the small gifts, especially when they are disguised as grandkids! Keep heading onward and upwards and we look forward to the next instalment of "Life as a Jedi knight"!! Take care, Christine
Hi Christine, , yes Grandkids are little parcels of joy, , I just wish I could drive to see the 3 of ours that live a couple hours away. My son drives over as oft as time allows and sends pics etc in between visits but there's a marked difference in their development every time I see them . But you can't have jam on it all the time.
I will try not to leave it so long before my next post.
Thank you for sharing. You are very brave opting for SCT. I would not be so brave if the need arose. Keep smiling and thank you again for the much needed spirit boost. Depression and fatigue continue to 'bug' alongside the joint and muscle pains. But 'hey-ho' my platelet count is in normal range. Life is goodish! Much love and hugs. x
Hello JackLina, I'm sorry to read of your physical issues and dreaded depression the effects of which are oft under estimated when one has a chronic condition. But it's encouraging to see you state that life is good ish. . And your platelets are good.
I honestly don't think of myself as brave, just very lucky to have another chance and I hope you aren't faced with needing a SCT. But if you are ever in that position you will find an inner strength to guide you.
Hi Chris, I'd been wondering how you were, very pleased the Force is still with you! I like grandchildren too - you can send them back! Actually we only have one - at the moment - he is 15 now, so not that interested in Granny and Grandad! But we have another due at the beginning of October. Unfortunately she will be living at the other end of the country (a southerner - worse than a Lancastrian!) but hopefully we will still see her regularly.
Anyway Live Long and Prosper (I'm more Star Trek than Star Wars!)
Hi Lizzie, , our eldest Grandchild is 11 and starts high school this time which is a few miles across town nearer to her mum's so we're thinking sadly we won't see as much of her as she grows into a young teen with a new set of friends. But that's life and if she's is happy then so are we.
Congrats on your forthcoming happy event. Pity about the distance but it could be Australia or worse still Lanky born 😉.
Anyway must dash , I'm about to be beamed up , , remember It's life Lizzie but not as we know it. And that sums up my knowledge of Star Trek 😦.
Looking good Chris,Great to have your update on how you feel and as always give us all a big boost.Never seen Star Wars but when my daughter was working in U S A. She knew Mark Hammel and took his kids to the beach often.......she is a lot older now and so is he and the kids!!!!
E -hugs to you and family,keep as strong always and keep us all going.
Sally,suffering in the 'canicule' here,need more than the 'Force' to help !!!
Hi Sally , , so you're melting I take it. . We've had decent weather but nothing like you experience in the US. I don't envy you the extremes of weather you endure.
I am shocked to read you've never seen SW. And then the news of your daughter knowing Mr Hamill aka Luke Skywalker, , wow I'd of nicked his Light Sabre.
I'm going to have to go lie down in a darkened room after those revelations.
Great to see your update Chris and to see such progress for you - well done kid - you have shown fortitude thro rough times and always shown care for all here and kept your sense of humour “despite all” - so glad you are enjoying good times with family and well appreciate your comments on what are the more important things - keep enjoying the things of real value and all the best our mate in future weeks. Jill - I love Star Wars too films and books 😀😀
Hi Jill thanks for your insightful words , it's funny how your outlook on life changes when you've been through it and what you used to think important isn't really , what's really important is those you care about. So yes I now value the simple things and don't take as much for granted as once did. Another bonus 😀.
Thank You ELIZBEN, , . . I'm pleased you liked my post , I try to write from the heart , it doesn't always come out right but hopefully the sentiment is there. .
Hi Chris, it’s great to hear from you. I am so pleased that you are able to get out and about with your grandchildren and have won back some independence. On bad days my two gorgeous grandchildren make life wonderful. It’s been said by everyone already, but you really are a true inspiration to us all and we love reading your updates. My blood is behaving itself very nicely at the moment, I’m glad to say. My problem at the moment is that I tripped over and fractured my shoulder in two places. Ouch!! On the mend now and hoping to be discharged from the fracture clinic next week, though may need some physio. Life changes in a second doesn’t it? That’s why we have to make the most of every minute, and I know that you know that better than most. Look after yourself my lovely friend and long may you enjoy your lovely family. Much love, Karen xx
Hi Karen great to hear from you too ! But not so great to hear of your unfortunate accidental trip, , I do trust you weren't holding your two little angels when you took a tumble as I see they are starring in your profile pic. You look so healthy and happy holding them.
You're right about life changing in the blink of an eye and living for today as best we can and cherishing life's simple pleasures.
Hope you're fighting fit and get the all clear next week. I wondered why I hadn't seen you on The Centre Court at Wimbledon, 😉
So glad to hear from you and find that at last you are doing well after your SCT. I agree with all the other positive feedback you have had, I love your glass half full approach.
Just noticed you mentioned dry eyes and I know that you will probably have researched this. I have found taking Omega 7 very helpful for this condition.
Thanks Tessa , , Actually you know I've not done as much looking into (haha) my dry eye problem as perhaps I ought. Dunno why really as I will try anything that might help alleviate the constant discomfort. I will explore your recommendation as part of my daily eye care.
I think that life is for living and my glass half full approach reflects that though I fully get that not everyone shares my outlook for whatever reason(s). But there's no doubt it's helped me through some very challenging times.
Dear Chris, what a treat this is. Not just your post but also all the outpouring of love you’ve received from all of us. We’re so grateful to have you in our lives & I hope you “feel” the love & appreciation we have for you. I agree 100% that the things that matter most is time with those we love. Vacations, trips, etc. were nice when I was healthier but the most important things, things that are the food that feeds my soul & warm my heart, are the times spent with my wonderful spouse, family & close friends. You’ve helped us all so much for so many years and are the epitome of goodness. If this forum had an official mascot, it would be you. Our brave & steady leader. Thanks for being who you are. Katie
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Bumps in the Road
Happy birthday (in more ways than one)
High ferritin post transplant
