Good Morning All , , hope you're not nursing hangovers after lifting a celebratory glass or two yesterday. . Apparently there was a wedding and a bit of a do. 😉
Saw something on Facebook today that kind of follows on from a recent post about the quality of life post SCT and thought I'd share it with you as it's quite remarkable in my view.
When I was on the Ward having my SCT a young lass was admitted with a urgent treatment need due to Acute Mylogenous Leukemia , not an uncommon occurrence . The difference here was that she was several months pregnant with twins. So far from straight forward. She had immediate chemo which put her in remission but her blood markers showed high risk of her AML coming back. She opted for Transplant from an unrelated donor even though her babies were still unborn. Come what may she wanted to be around for her 5 year old at home.
She had the Transplant and went on to deliver two healthy babies a few months later. She celebrates her 29th birthday today. Nothing short of a miracle and testament to the skill and care of the Transplant Team at Manchester.
I love a happy ending 😀.
A quick update : as my Extracorporeal Photopheresis treatment has ended I had my Tesio Lines surgically removed with local anaesthetic from my chest . They were embedded as they had been in much longer than average but after some cutting and tugging they were out. But I keep thinking I've forgotten something every time I leave home.
May your God go with you -Chris x
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JediReject
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Yes, it was a lovely day yesterday, thoroughly enjoyed the wedding coverage. I thought it was very uplifting!
Thanks too for also sharing another uplifting story with us. Can’t imagine what this young woman and her family must have gone through. So glad this story had a happy ending; a positive message there for us all. Well done to all concerned.
Has the ‘extracorporeal photophersis’ treatment helped? How are you with relation to the gvhd? Hope you don’t mind me asking!
Hi Mary, I don't mind at all when folk ask how things are going but I stop when they glaze over !! . A relation of mine asks but it's only a foil for her to tell me at length all about she is. Of course being the audience she obviously craves I listen actively, empathise at appropriate points and wish her well. . . Well what else can one do but help someone who needs an ear.
The ECP treatment is difficult to measure but it's hard to say if I would of made the same progress without it. It may well have helped improve my liver counts which were very high to begin with. We felt that it had run its natural course as I had been on it alot longer than most.
My GVHD generally has settled, my skin is fairly good if a tad dry here and there, i can eat quite spicy food with no sickness but I'm left with very dry eyes, blocked ears and some mouth issues. And I'm unaware of any internal organ damage. It's the steroids that have left me weakened physically as caused bone damage esp to my spine and those cataracts of which one still remains. But I'm ok and will adjust my lifestyle to suit my ability. X
So glad to hear of your positive progress and the positive story. It does make you grateful for what you’ve got when you see how easily it can be taken from you. All the very best to you, your wife and family Chris. Kindest regards Aime xx😺😺❤️❤️
What a truly wonderful story. Who would believe that someone could go through all that while still carrying twins! Never mind coping with the mental amplications. Huge pat on the back to our NHS too.
Yes, I did raise a glass yesterday, 🥂 pink fizz, only from Aldi but it was lovely. I felt I had to after sitting in front of the goggle box all morning. 😂 In fact, you’ve just reminded me I still have half a bottle in the fridge so I might just have one now, sat in the garden with my factor 50 and sunhat on!
My very best to you and Kate, I hope you are able to get out in the sun for a bit.
You are such an inspiration. Thank you for sharing such a cool story, and I am really glad to hear that all of your personal accessories have been removed. It must feel quite strange after so long a time.
That is an amazing story of the young mother. It just shows what medical science is capable of! She is a very lucky lady.
I am glad that your out of body experiences have now ceased. I think I would miss my portacath now if I had it removed! A chiropractor once told me that I should not sleep on my front and to sew a tennis ball into the front of my pyjamas to prevent it! Trust me to go one better and get a metal implant that fulfils that same purpose! And just to cement that my regular transfusions leave me bruised from one month to the next! No low cut necklines for me - my mother, rest her soul, would be so pleased! She once stopped me going out in a vest style tee shirt in my late teens. She would be horrified at some of the garments and display of bra straps worn today😳!
Hope everyone is enjoying the sun. I hate the heat as I pour with sweat but it is nevertheless more cheering to see a sunny day that day after day of flat light and rain. It also helps in the quest to raise my vitamin D levels too
What a lovely story not only of the young mother, but of hearing your news and how you are. Its a holiday here today Monday 21st in Canada to honour Queen Victoria's birthday so it is a very royal weekend here in Canada. If we wanted to see the wedding coverage began at 4 am. The weather is beautiful too. All good wishes to your family. I hope your grandson is doing well. Jean/Winnipeg
Hi Jean, yes my Grandson is doing really well thanks , along with the other 5 Grandkids we are blessed with. Had a water fight the other day with our 10 year old Grand-daughter and she said it was the best fun she had in ages. I didn't mind tellin her that it was the only real good fun I'd had in the last 3 years !! I was worn out afterwards and ached all over but I wouldn't have had it any other way.
I didn't realise Canada still holds dear the memory of our old Queen Vic , , I shall research that as I'm interested in that period of history.
Thank you for sharing the story. You sir are truly an inspiration to all on this forum. Hope we can all proceed with your courage and outlook on life in general, you give us hope and that is very important.
Thanks for responses folks., , I posted the story simply to show just what is possible against the odds and no matter how black things sometimes seem there can be a good outcome. And this is just one of many success stories to help offset the ones that don't have such a happy ending.
Take care everyone and enjoy the lovely weather best you can. X
Hi jazzyb, , well if you go by a couple of folks reactions who haven't seen me for a few months I'm finally looking better and feeling stronger. I think what helped enormously was having one of my thick cataracts out. Suddenly after months kind of locked a bit 'inside myself' I could see and it really lifted my spirit.
Hi Chris. It’s so great to hear from you and while the young mother’s story is truly amazing-such a strong woman-I think your news is more important to all of us. It warms my heart so much to read that you’re having fun & having your spirits lifted. You deserve all that and much more. What a wonderful sign off on your posting, thank you. Katie
I'm just catching up on all the posts from the last few days, as we've been staying down in lovely Dorset for a few days, and we've been so busy there was no time to get on the old tinterweb. So pleased for the young lady having the twins. It's great to hear good news! Also glad you enjoyed the waterfight!! I like grandchildren - you can send them back when you're fed up with them. We've got a "grand-dog" as well - and you can leave him alone in the house even though he's only 18 months old - social services don't like it when you do that with the human versions!
Luvverly to hear from you Pam. I oft think of you and wonder how you're doing. I'm going along fine now , not running marathons but life is a tad easier but not without its frustration. The best thing is I can now enjoy our Grandkids as I'm stronger and have more energy.
I haven't posted much of late but like many I keep a watchful eye out for any posts where I feel I can add value or give some reassurance. As I won't forget the support I've had when things were really tough.
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