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HelenSpeedwell
Comments
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Hi Dave, Just a quick update, I've got to eat something. So far today I'm very sceptical about everything the dermatologist said yesterday. She, and a nurse, bandaged my feet ankles and last night I had lots of fluff stuck in the open wet wounds and caught pulling and tearing, pulling the flakey skin off. I doubt her…
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Hi Dave, I met my dermatologist this morning before my ecp. I asked her a few questions and she's been quite helpful... we'll have to see what really works. Her aim is to soften up the thick , hard layers of skin (maybe a bit like yours) I don't have the prescription yet, but I'll let you know. I can shower but should just…
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Brilliant news Beaglegirl. I'm relieved for you. I take myfortic 2x day. You can Google it, it might be the active ingredient you mentioned. My team stopped it abruptly end of January and i was in acute pain with a significant flare up within 4 ....5 weeks of not taking it. Check it out for him if that's what he's taking.…
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I agree with Michelleanne, it'd be good if you could find someone to talk to. Ask the nurses, they must have some sort of service. I can't imagine what you're going through. It's ok to cry, in front of him too. It's a good idea to try and think how he's feeling though, to help you keep calm. Be kind to yourself Beaglegirl.…
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Hello Beaglegirl, That sounds very very scary. It's great that you asked for help, well done! I can't help you, and there's no magic Wand anywhere, which is exactly what I'd like to send you. You are waiting for results, from his biopsy, that's hard too. He might well make it through. Maybe not. I want you both to enjoy…
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I look forward to these chats too. It does me good to know you're in a good place Michelleanne. Thanks for sharing that. Love to you all Helen
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Hi Dave. That sounds horrible. It's bad that you can't be standing up for long. My physio said our skin is like burnt skin and needs to be bent, although causing ripping and pain, to get some elasticity back in it. But I'll admit I'm sceptical, because burn sufferers have intact immune systems and their skin can build…
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I know what you mean about nurse doctor difference Michelleanne. Thank goodness there's plenty of "goodens." Reassuring to hear that from him. See, you're doing well! Very good tactic to go to that place of kindness and calm. I reckon their colleagues also see it in them. We all know it from all walks of life. I think I've…
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Hi Dave, I'm getting the feeling I'm recovering a bit after my flare up. Didn't take painkillers yesterday, a first, and could hold a conversation without them, quite special. I'm cautious, don't want to celebrate too soon. Let me know if those new meds are working in any way. And I'd be interested to understand what's…
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Hi all., hi Michelleanne, Audrey, Dave and Beaglegirl, That sounds really annoying Michelleanne, "lose weight", argh! I'm interested to hear if your skin improves with the new meds Dave. I suppose I'm getting hopeful, never a good idea. I hope your daughter biopsy went well Audrey. I can just go right there in my mind's…
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Hello all, Feeling a bit unsettled as usual after the ecp. It's depressing sharing a room with someone with not long to go. I usually take a while to shake it off. Today I'm doing my best at a bad job. Something I'd like to share from you tube, a 102 year old's advice to us all.. It's not about overcoming things, it's…
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Thanks Dave . The reminder for patience and trust.. belief it might get better is helpful and calming. I'll keep you posted. Love, Helen
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Hi Dave, Im really struggling, with this skin ghd. I don't know how you've been coping. It's realy incapacitating. I can hardly write this, I'm so distracted with the pain. Any recommendations? I'm in the clinic tomorrow for the ecp again. I'll ask them about that med and the diagnosis. Night night, Helen
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I find patting my acutely inflamed gvhd skin with home made towels made from chopped up old cotton bed sheets much better than towelling. And a tip from a you tube advice video was to apply moisturiser to skin within 3 minutes after wetting it. It absorbes the moisturiser better.
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Yes the skin is tight, I have neuropathy too, bad at night. Everything gets worse when tired and or stressed.
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Hello Dave I can understand your description of standing up. I have that in my ankles. The skin is thick there and breaks/ rips when I move and stand. My physio said it's like treating burnt skin, it gains elasticity when it breaks .... but of course he forgot the last part of the equation... with burn patients, the skin…
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Thanks Dave. I'll mention it next time when I follow up with the team again on the meds suggestion. Love Helen
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Hi all, The med teams are fantastic, but always be vigilant. They made a mistake with me in February but have told me I don't need to be frightened of it happening again. That was the episode of abruptly stopping meds plus my infection which ended up with eye problems, lenses and morphine. Anyway, ... Wondered how your…
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Hello Maggiemoo, I hope things work out for your baby. I had a boy in my class as a primary school teacher. It was in the 90s. He recovered well from sct leukaemia and put it behind him. I think the young body has very powerful regenerative power. Love and strength to you and your baby.
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Hello all, I hope you're coping somehow David, Michelleanne, Beaglegirl, Audrey and your daughter, and all your loved ones. It's the holiday weekend here. Holiday greetings to you all. My open wounds are really challenging but I'm feeling positive today. My adult children were round. My poor brother in England, is…
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Hi Beaglegirl, I can't help with your question, but corona, covid..? Two months ago I was overnight in the clinic on the blood Cancer ward (only for the night for 2 day ECP, I'm in remission). A sister came in and said, don't be surprised when we come in fully covered, hair and full body cover for hygiene, we've just found…
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Thanks Michelleanne, My illness has brought us much closer as a family , through a rollercoaster from ****. I just spotted your post from 21.5 and I totally agree. It's hard though. I have to be in the now too. My brain is unsure in the past and also plenty of places I don't want or need to go to there..and the future is…
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Good night all, I just popped in to copy the name of the...Rituximab. I'm hoping it'll help. I wish you could get jakavi on the nhs Dave. The staff are fantastic but they don't make financial decisions. I'd love to send you some Dave, only joking ... I bet it's all been tried. I'm glad you experience the good care of the…
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Hello all, Just skimmed through all your kind posts. Thank you. Rituximab.... oh no, I'm already feeling hopeful it might help. Really good to hear from you Dave, the pain makes normal life impossible. The skin is my major issue. I'm in the clinic for the ecp tomorrow and will mention it. I think the Reha is too soon so I…
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Hello all, I'm relieved to hear the good news about your daughter Auds. I'm struggling and was at the GP this morning. She's agreed for me to apply to go on a rehab for immun compromised patients. I don't look forward to being in an institution again but my quality of life is really poor so I hope they can help me somehow…
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Hi all, The ecp gave me a bit of life spirit back. I'm booked in for two week gap thank goodness. My ecp 'upper' has enabled me to be a bit more active today. I went to gymnastics for seniors this morning, run by the red cross, on one morning a week in the village school. It's great cos I can join in sitting down. Small…
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Hello all, just to let you know... I just got the call that I'm having the ecp, leukapharese coming monday and Tuesday. I'm so relieved, wanted to share with you all. I'm thinking of you, sending energy. Love Helen
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Hello all, I'm really pleased to hear your daughter's in a better phase Auds. That's very special news. Thank you. A life festival sounds like it would do me good at the moment and help me focus on the positive Michelleanne. Pleased you approached it positively. You are so blessed with your grandchildren, I'm very very…
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Hi all, So they told me they're reducing my ecp. I have argued as well as I can for a phase of stability first before they start reducing it. I'll be really disappointed if they do. I've really benefitted from the ecp. I can chat and engage and am not so low again, it'slike an upper. I really need it. But one good thing…
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No, your not going mad Michelleanne, you made me smile. I'm writing this in the clinic. Back on the machine tomorrow and then they've got me in for an appointment to talk about my flare up. .. legs, eyes. I bet they say there's nothing they can do. I'll say night night to you all, sleep well, Helen