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HelenSpeedwell
Comments
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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
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The link doesn't work
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Hello Audrey, Dave, Michelleanne, I hope Beaglegirl is doing ok. She's very present in her absence. I hope she can feel our energy. (We'd love to hear from you Beaglegirl, whatever's happening for you)) I seem to be picking up a bit.... just at the moment. I've started setting up my meds and having them next to the bed…
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Sounds good Michelleanne, I'm up for that. I'm a bit late, but I can drink it luke warm too. Thanks, I like plenty of milk:) I've got that single room again and can relax. Feeling lucky. I've got to hobble down to the kitchen bit now to get myself a bowl and spoon, I've brought my own food. It's painful but... I'll get it…
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Im just off to the clinic for the overnight ecp. And tomorrow dermatologie. Thank goodness I know you're all with me. You give me strength, thank you. Love Helen
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Hi all, Thanks Dave, I'll check out the link. Auds, how does your ptsd manifest? I thought I'd worked through it really well but just yesterday, after about a year or more, had the start of a panic attack. I could control it better but it's a shame. I hope you can find some peace with it. I still haven't asked about the…
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Thank you Michelleanne For your kind advice that I can put to use. I'm feeling a bit better now but it's still there. I'll remember when I need your kind words. I found it helpful to cry a bit today although I can't produce tears. I'm usually so resilient but it just feels too much at the moment. And no-one has the…
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To be honest, struggling. Thanks for asking Michelleanne. I can see my family moving on and I'm stuck. My adult children flying the nest is all good, I'm pleased for them. But I can tell hubby needs to make a life for himself without me, with able bodied friends, go out and about. I am really limited, can't find any shoes…
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That's great news. I'm really happy to hear that. Wonderful for you to get a bit of positive news. Sleep well, Love Helen
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Keeping fingers crossed Michelleanne x
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Hello all, Hello Auds, I recently saw someone's gvhd story with photoy on fb and I was struck by how youth played a role in their very very very long, but inspiring recovery. How old is your daughter if you don't mind me asking. If she's under 40 I imagine her body has a lot more resilience than post menopausal, after…
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Hello you lovely lot, I was just lying on the sofa listening to a podcast from my favourite BBC radio 4 channel. It's about the values of doing nothing. It's good, positive listening but now I need to think more positively about my future because I have so much bored time. ...hmmmmm... let me think, writing, calligraphy,…
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Thank you Auds You're so kind, and in the face of all you're going through. A star. Your lines help me... don't worry about writing too much. We're all grateful. I might ask about the infusions your daughter's getting, for me. Have peaceful weekends all, Love Helen
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Hi all, Oh my... Dave, thanks for the link. It's absurd reading. It's got nothing to do with the price. It's infuriating. The text explains it's real value. Crazy. ...yes, in for the long haul. It's so debilitating and the pain is the worse. I want them to make me pain free. But this is the real world :(... Maybe in 10…
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Hello all, It's Saturday afternoon and I'm sitting on the terrace going through my phone. Monday in the clinic for the ecp again. It's nice to be outside even if never in the sun. I'm thinking of using my wheelchair to get out a bit. I haven't been out for weeks apart from physio, clinic etc. In car or taxi. Just to be…