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HelenSpeedwell
Comments
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Hello Beaglegirl, Really sorry to hear this. It must be triggering the traumas from first time around. I don't know what to say here. I can only send you a big hug. Try to get through each day as it comes, stay in the now. I can't imagine how you're coping. It's really strong of you to share here. Do you have good friends?…
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Hello Audrey, Steve, Dave, Adelaie, Michelleanne, Just a quick catch up. Thank you for being there. You strengthen me. I'm off to the clinic tomorrow for my ecp. For my eyes I now have ciclosporin and steroid eye drops. They removed the bandaid/bandsge/protective lenses. When the pain was acute I was prescribed morphine…
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Hello all, hello Adelaie, Wonderful news, free from leukaemia, really lifted me to read it. Yes, Dave, me too, things aee blurry but pain is controlled, Myfortic back doing its work, keeping me awake but thankfully keeping the gvhd at bay it seems. Hopefully your daughter can get a bit of stability going for a while…
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Hi Adelaie. Michelleanne, Auds, dave steve, Sorry, can't read at the moment, eye gvhd. You're all with me thank you. They've put me back on myfortic. Love to all, Helen
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Hi Michelleanne, When was your sct? I'm on antibiotics at the moment, my bowels seem to be unsettled with them. I'm taking them prophylactic after a little biopsy. Looking forward to stopping them. How are you doing? It's good your blood values are stable, but a shame they're not improving. I guess being in the now is all…
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Hi all, Just to follow up.... For the sclerosis I just have to keep moving my ankles and applying lots of moisturising cream every few hours. For the eyes the doctors are not specialised enough and they suggested I go to the eye clinic outpatients in the next few days. I didn't get my lab results as they were still working…
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Sorry to hear that Dave I has the clotting problem too. It went on for months. They usually found a solution but process slowed down. It has got better and I think it's cos the ecp is helping. Have the feelinh the quality of my veins is improving. They say drinking lots of water helps too, but difficult cos they can't…
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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…