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HelenSpeedwell
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Hello, I'm 18months post sct and have chronic gvhd, currently skin and eyes, I'm relieved to say that my cancer related fatigue (CRF) has gone. I still don't have energy or mobility to do much and walking is painful and stairs tortuous... But all that said, I just stumbled on this fitness/exercise for geriatrics in you…
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Hello all, That's it, thank you Michelleanne, they're called super noodles. Yes, this site, ie, you lot:) are helping me stay positive and count every tiny blessing. I'm in the clinic tomorrow for my sclerosis. I'll keep you posted. X
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Hi Dave Are you having the light treatment already? What do your team say about it? Best wishes Helen
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Thanks Audrey X
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Hello Beaglegirl, Any news? How's he doing? Hope he's stable. Helen
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Hello Dave, A new dish I discovered today which is an adaption of the non nutritious pot but very edible pot noodles..... here's how I did it..., a little pack of instant noodles including flavouring and oil in tiny sachets. Make the instant noodles according to instructions (3 mins covered in boiling water). When they're…
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Thanks for updating us Audrey, it feels supportive to think that she's able to be with her boys. It's good news and so lets just enjoy it! I had some good moments over the weekend. Thanks for your post Audrey, it has just reminded me. Take care, Helen PS. Oh yes, before I go... A new dish I discovered today, a little pack…
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Hi Adelaie, hi Dave, hello All who might be around, This is a terribly difficult time for your daughter and you, it's completely ok that she's down and the fact she can share it with her mum is the best compliment for your relationship. My hubby gets sad that I put up a front for friends but not for him. Difficult but…
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Hello Mex, That sounds like a very long strenuous way back to work, but we'll done for seeing it through. It's inspiring to read how you held on to your principles through every twist and turn. And it sounds like you're in a good place now. Well done you! When I lived in England still, left early nineties, I taught at a…
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Hi Dave Sorry for you that you've gone through all that. Lots of very frightening times. Words aren't enough. I'm sending you compassion and kindness. Maybe you can take something from my story. I'm not comparing, just offering it so you know. I'm grateful that I wasn't really very conscious in the very bad times, I wasn't…
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Oh my, Dave, I'm shocked by what you've been through. I'm just writing a quicky now, have a clinic appointment this morning early. Need to get moving. Thank you so much for sharing. It's probably a bit difficult for you to see it all written down. Makes it more real. Let's stay in touch. Helen
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Hi Dave Ecp is becoming more routine thankfully and the touchy nurse was on holiday so it was very peaceful for a change. I even managed to sleep. I also feel it's doing me good, but it soon starts to wear off. I can't remember what days you have your ecp. Would be nice to know. Thanks for giving me a bit of perspective…
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Hi again, doxycillan comes to mind. Dave , I think you recommended it. . May I'll ask for it, probably need to mention it.
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Hi All, Hi Dave, Wasn't sure which thread to post in but... long term gvhd was clear when I spotted it. I have been lucky till now to have debilitating problems all round which have seriously lowered my quality of life, bowels, lung, passing water, skin,... , but I haven't had high levels of permanent pain. It's my eyes.…
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Hi Lynsey, How's it going? It's a couple of years later, maybe you don't use the app anymore cos you're busy living life to the full. I really hope so. Best of luck, Helen
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Hello beaglegirl, What have the doctors said? I think my platelets are low too but I'm not worried myself. Can you talk to the doctors and ask them about it and tell them your fears? Sorry I can't be of any help, I just want you to know we're here for you in our hearts. You did well to write. Keep us informed. It's a…
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Hi Dave, There's no point wishing to be better. It is as it is. My ankles are terrible, feels like cheese cutter wire wrapped round them. Thanks for your kind wishes Dave. I hope it stays as it is and not 4 steps back. I ditched any ideas of what I should be eating and went for the pot noodle, thanks to you! It really…
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Hi Dave, Ecp and painkillers seem to have helped my appetite. I'm eating better. Hubby even said he likes to watch me eat. Preparing food is easier too. I'm still only eating wet food or oily food but it's definitely better. Pot noodles, banana fritters fried in batter with syrup. finely chopped lettuce, chard, baby…
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Hi all, I'm deeply moved by what I just wrote, hubby too. Thank you so much for being there, you've strengthened me on my continuing journey. H
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Hello Audrey, hdllo Michelleanne. To answer your question, the fatigue is much better but the sclerosis on the ankles make me very limited to what I can do, that's why I got painkillers, also gvhd of the eyes, they burn and get very dry so I'm not allowed to drive. (Up to then I was able to drive 5-10minute trips) . I also…
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Hello Dave, Great that you've got ecp. It took a few months for me to feel benefits. At the beginning I felt worse with it. Low mood, extreme fatigue. But I can feel the improvements. My eyes are getting worse unfortunately. They now have burning sensation, painful. I think my Appetite improved because of painkiller…
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Thanks Dave, your calming sensible words are much appreciated. It puts things in perspective. My sct was 17 months ago. I'm still on jakavi 10mg 2x a day, and two other immune suppressants as well as lots of other things, but I feel at last, that my body might be getting somewhere. At last , I can eat. It's really new for…
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Hello Audrey, hello Adelaie, I'm struggling myself with chronic gvhd over 18 months after sct. I'm also a mum of two wonderful adult children. I can't begin to understand what you are going through. I can only send you two my compassion, kind thoughts and love. You are really doing such a good job, I can't start to…
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Hi Dave, keep me posted with the impact of that device. It sounds really good, I'll check it out on amazon but shame it's expensive. It would be marvellous. I'll ask my team if they've got one I can try out In the clinic. Helen
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Thanks Dave, really helpful. I'll check it out with my team. Helen
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Hi Audrey, above is a link to a facebook group on fatigue, the related group and App is called 'untire' and based on recent research from Holland. I'm sending it because I can't find a link to the untire app which I found really useful when I was struggling with cancer related fatigue. Maybe you can find it in the google…
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Low-dose UVA1 phototherapy for treatment of localized scleroderma☆,☆☆,★ MartinaKerscherMDaPeterAltmeyerMDa Hello all, Here's the title of some research on the uva1 treatment. I just googled uva1 treatment. It looks promising. My only concern is that the chemo and ecp have made me more prone to skin cancers triggered by…
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Hi Dave, Thanks for getting back, yes imrelieved the ecp is back on. I don't know how, but it is helping. Fatigue is much less. The painkillers are new and seem to be the driver for my new found appetite. I've even put weight on for the first time, as of my last regular check up last week. Thank you for telling me about…
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Hello all, How's it going Hollintree? My skin gvhd is limiting my walking and stairs are difficult. Painkillers are helping a bit. I was told today in writing that I can't drive because of my gvhd eyes. I'm planning on having the tear duct plugs fitted asap and reversing the statement asap. Without the car I cannot manage…
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Hi Adelaie Has your daughter received any results yet to confirm the stem cell transplant has worked? You mentioned in a post that she'll find out soon. I hope so, and then she can focus on coping with her symptoms. Sending a big hug Helen