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HelenSpeedwell
Comments
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You've put it well Dave. I'm thinking of you too. It must be so hard for you. I find the social isolation reeeally challenging myself and yet have family. You're doing so well even though it feels like the opposite I guess. Sorry to hear you've been struggling. I have been too. I don't know what it is. Hopefully the ECP…
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Thank you for getting in touch Beaglegirl. You're doing just the right thing staying in bed as much as you need. You wont be in bed in 5 years. It's absolutely right for now. You're being kind to yourself. Make sure you've got enough food in and the necessaries. You'll get the funeral behind you. Try to be able to get into…
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Hello Beaglegirl, I'm very sad to hear your news. You're right, it's not fair... I'm afraid I have no words. Your pain, I can't imagine. I hope you have space and time to let your feelings go. A friend works in palliative care and when I had an unfair bereavement years ago that really shouldn't have been, for medical…
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I can't find you on fb :(
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Super!
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Hi Michelleanne, hello my dear Anthony Nolan family... Please be kind to yourself. It's definitely noone's fault that our social lives have so very radically changed. I've lost people too and they've 'lost' me. It's not a friendship if the will doesn't come from both sides. It wasn'tto be. Thats ok. We're doing very well…
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I'm looking forward to that cuppa, it'll probably be cold by the time I get there.. that's ok. Michelleanne I'm glad they're being rigorous looking for the causes of your immune dip. It would be nice for you to have an explanation from them. I've got some values out of sync but they don't know why and say it'sprobably the…
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Love to you all on the last day of this year. It's more than challenging to conceive of 'time frame' for us all ... at least for me. I seem to still be in a strange "bubble". But here's sending us all kind compassion for our 2024, hoping that we can ride the waves with a bit more inner trust, self belief... that'd be nice.…
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I'm touched, love to you all. Where would we be without this medium. Counting my blessings. Love Helen
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Hello dear team, Thanks for being there, thanks for being the only people around who have a deeper sense of understanding than most.... actually, more than anyone else. You've been more helpful to me than you can know. I want to take this opportunity to wish you all, Dave, Michelleanne, Audrey, and if you get to read this…
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Thanks for the tea Michelleanne, just what I needed. I'm glad the mouthwash is working for you and it's great to hear your coughs getting better, a relief I'm sure. I hope your other challenges don’t pull you down. Mouth and eyes seem to come and go on an hourly basiss for me. I have cortisone tablets which dissolve quite…
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Hello all, My intense outpatient treatment, every 2nd day for 4 weeks, seems to be holding. It's already deteriorated a bit but I can walk much better. It's wonderful. They didn't offer me the light therapy but the skin has become much thinner with the strong cortisone cream and cold fatty compresses, that I'm glad I…
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Wonderful news! Enjoy! I am:) ... yes Michelleanne, we've sadly all experienced the hopelessness. I hope your eyes stay stable Beaglegirl. Much love to all.
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Hello Beaglegirl We're sending you loving, compassionate energy to help you through this. Please try to feel it coming to you, maybe not in the panic attack moments, cos I think we're all on autopilot then, but when you come down, we're giving you a big hug. I do hope the results showed some hope or at least stability. As…
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Thank you Liam, it's good to know you're there. Helen
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Hello Beaglegirl You are in a state of 'alert' for hubby and so you're probably getting panicy because of all your hormones running around trying to protect you and help you. Adrenalin and cortisol are clearly not helpful right now. It's just an idea ... Maybe it would help to chat with a trusted friend about strategies to…
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Hello you lovely lot Just wanted to wish you all a happy , peaceful weekend, We're a good team. Thank you for everything, and that is more than you think. Helen
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Hello Audrey, no need for sorries, it's always good to hear from you, whenever. I'm sorry to hear that you've been busy sorting out your son's estate. It's so painful I can't go there. Please know you have my love, all the way from Germany. Perhaps you can keep a record of any lightheaded spells your daughter has. I had…
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Hi Dave I'm not prepared to do the uva1 treatment if it increases my risk of skin cancer. It's early days wigh the new regime so I'll give it somf time. There's no urgency or stress. Thanks for thf info on messenger. I look forward to reading it asap. If I can persuade my team I will. I think, after what you say, it's…
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Just got back from my first treatment day in the dermatology clinic. I was supposed to get the uva1 light therapy but... interesting for you Dave, they won't give it to me because of my immunsuppressants. Perhaps you can ask your team Dave. They knew about PUVA and skin cancer risk but this was something else. Not because…
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Sounds nice and cosy, enjoy x
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Hello all, It's good to have a break from fb. I only do the gvhd site, but it's really helpful for me. I just wanted to let you know you're very much with me. Thank you. I'm with you. How's things? How was the stand up scan Michelleanne? With me, My skin is , feels, just the same but looks better after a week of cortisone…
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Dave, have you subscribed to Facebook or do you take ads? Have any of you got experience with the new Facebook conditions? I really don't want to pay 13€ a month. Night night all Helen
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Thanks Dan, I can read it now. :)
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After just a week on the high dose cortisone cream, "momegalen, fett Creme MomeGalen 1mg/g Fett Creme, from the company Galen. I used it before but carried on walking with bandages and the bandages pulled the softened skin open. This time I've just been barefoot at home and the rare occasion I have to go out, wore my…
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Thanks Dave, That sounds awful for Beaglegirl and her hubby. Poor things. She knows where we are if she needs us. I'll be having the uva1 too as of 16th. With the positive research results from it it looks like it might be a light of hope. It makes me smile, that would be wonderful, even if only tiny steps. We'll be…
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Hello Audrey, Dave, Michelleanne, It's very different I think with a second transplant. I guess every sct is different. We're all on our own very different journeys. I'm glad your daughter's found some strengthening support. It must be a real relief for you yourself too Audrey, great for her. I'm pleased for you all. Ive…
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What a joy for you Michelleanne with your granddaughter! I'm really pleased for you. It warms the cockles of my heart to hear that. We're all doing so well in this terrible place even though it doesn't feel like it at all. We're still here. That's already saying something. We're fighters. Love Helen
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Yes, you're right... there'll be most times when I can do nothing and don't want to either. I'll take it baby steps and won't work on it when it doesn't feel good physically or mentally. Projects seem to really help me get through the day even if I'm not well enough to do anything on them. Just having the feeling lifts me…
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Thanks Michelleanne, I'll see how it goes. Like you say, something else to think about and maybe helpful to others. X