Please read the house rules and keep this community safe for yourself and others.
HelenSpeedwell
Comments
-
That’s a bit weird , must be a feeling… I haven’t been around for ages and just by chance popped in… and here you are, i hope you’re coping somehow Audrey, can’t imagine how, I’m sending a hug… and a hello to your daughter and the children… a hello from Germany:) so far away! sad to hear you’re struggling Alison. Grieving…
-
I wrote the message at the bottom ages ago, but forgot to post. so sorry to hear about hubby Audrey. I hope he’s picking up after the major surgery. It’s our age… we’re really noticing it here too. It feels like we’re getting old in speeded up time lapse. My eyes are making a difference still, but it is treating the…
-
guess it won’t help , but mucosolvan… plenty of it.. and many months and months hoping and lots of drinking water helped my cough in the end… but I think you’ve had yours about a year already Michelleanne. I do hope it goes eventually. Is it productive or dry? Ive found a good resource from Harvard medical school. I just…
-
Hello, The vertigo symptoms sound challenging Michelleanne, … it would be nice to know why.. I hope it’s not too bad and you can cope. I’m being kind to myself at the moment which seems to help me be strong… for example , I lay down on the sofa today and didn’t have my inner critic feeling bad about it, even had the telee…
-
Thank you Michelleanne, it counts hearing it from you because you know what you’re talking about. And how it is to be frightened. but I will ask them if it’s a risk and if there’s any treatment of any kind. In the past they’ve just said no. love and thank you for being there. Even if we don’t check in so often. how are…
-
It’s already October… wow! thanks for being there. I hope your daughter’s shingles is better Audrey. apparently it takes ages. Mine was a milder form, had it round my ear. Today I got back from the clinic after overnight for my ECP treatment, leukapharese. Unfortunately spent the night in one of the rooms I was in for…
-
Hello Audrey, hello Michelleanne, and maybe hello Alison , yes Audrey, you’re right, we don’t check in so often, but, like you, this little bit of contact is ‚there‘ even when not active. Audrey, just a bit of info, at least if only anecdotal… I feel very proud, relieved, grateful… that I’m NOT a cancer patient.. like your…
-
Hello Audrey, Michelleanne and Alison, I’ve been out of the loop for a while. I got the news about our dear Dave passing just before my trip to England. It has really affected me. I don’t think he was that unwell, apparently an embolism. I was relieved at least that he went very quickly. So sad. I think he had a…
-
Hi Michelleanne, I’ve sent you a direct message. H x
-
Hello, I’m struggling with a cough and cold and my old gvhd feet… I’m also struggling with a new mobile which I can’t understand. .. and on the back of all that, I’m supposed to be enjoying myself with family in my homeland… first visit for 5 years. Really exhausting, they want to help but I’m feeling stifled, a very…
-
Thanks Michelleanne, sorry to hear that about your chest diagnosis ... but impressed that you're keeping positive some how despite it all... I'm sure you have your ups and downs though. Hoping you can feel a bit of control over it, that the antibiotics can keep it in check a bit. My initial ' up' after my little holiday is…
-
Hello all, I often wonder how things are going, with you all... This is a long one.. Michelleanne, have you got a definitive diagnosis for your chest problem? Or is it getting gradually better? I do really hope that you start to see some improvement, however small, just to give you some hope and motivation... although hope…
-
I'm with you in my thoughts Audrey. Hope you're ok. Can't imagine how you're coping. So pleased about your daughter, Love ... to all too, hope you're all ok. Helen
-
Hello all, Tiny secret gardens is a Facebook group. I'm also in gvhd upside and gvhd. A few others too if you're interested, let me know. Dave, it was lovely to see you light up about Alison's horses. It's a good sign she's not around, but a shame particularly for you. I have a tiny garden, it's a real overgrown cottage…
-
The flight was cancelled as I sat at the gate in my wheelchair. What's happening... bonkers. We've got heat alarm level 1. So I'm in doors with shutters down. But the airport saga pushed me and that was good. I even went on a bus first time in 3 years. Lots of help and support but still... I do stairs backwards. I'm…
-
Hello you dear lot. I keep wondering how you're doing Audrey? Are things moving forward? I'm with you in my thoughts, especially at the moment. I hope your daughter's making headway. That's lovely to think of. I'm off to visit hubby in a clinic in Hamburg today. I'm flying from the south of Germany, alone with registered…
-
That's nice... I can bond with that idea, my genetic twin. I do hope your mouth isn't too bad Michelleanne. Mine was so bad I could hardly brush my teeth. It's better than it was... far from normal. Night night 🌙
-
Thank you Audrey, I needed that bit of info. You're always there for us and now I can understand you better. Please let me know if you'd rather I didn't mention it. It is so exhausting and I guess it might be helpful to have space where it's not mentioned. I'm thrilled to hear that your daughter is moving on. That's…
-
Michelleanne, I was given some tablets/losengers for my dry mouth at the dentists recently. I only use one at night if I need it.(in the day I use mouth wash) I'm going to get some, they're over the counter, prescription free...called Xylimelts, only for nights. And Volon gel helped recently too, both mouth gvhd. The volon…
-
Hello Audrey, thank you. I was thinking of you too... wondering how it's going. You have a lot on at the moment. I hope you're coping ok with it all, how are you? I hope they can process things quickly. I hope your daughter is still doing better. Is she in her own home again now with the children? I'm writing this in the…
-
Lovely to hear from you Michelleanne, I'm really glad they've been able to sort you out a bit with your low mood. It's so important... I think it even impacts on my physical well-being. I'm feeling better too, yay hay... we can't say that very often . Always good to share, whenever, whatever. I'm thinking of you Audrey,…
-
Hello Audrey Thank you for your update, it really is very very helpful for me to know that your daughter is doing ok. Maybe she'll have a challenging path ahead, who knows. I met a sufferer by chance in front of a waiting room and he was having his annual check after almost 30 years of no trouble after a sct and leukaemia.…
-
Hi Dave, ... mepilex is for burns ... just googled it. That's new to me. It gives me a new approach/search tag, for my skin. It's for open, leaky wounds. You can leave it on up to a week. That's the stuff I've been using... without 'ag'. It's silicon and doesn't breath. Maybe you could get a bit prescribed. I cut it into…
-
I've been giving tacrolimus another chance and , with emollient/Dexeryl and other moisturisers for dermatitis ... it seems to not be getting worse. I even went out with Nordic walking sticks tonight and got some amazed looks in the village that I was so good at walking. One farmer raised his eyebrows and did a double take.…
-
Hi Dave, my Dr at the lymph clinic said he couldn't help me until the skin improved... hat was when I got that intensive cortisone treatment every 2 days.... Unfortunately my skin is also weak, leaky and the same Dr said when/if one wound closes that another will probably open. I think ecp is the only hope. The odeamia…
-
Thanks Michelleanne, and i hope they can find a way to help you with your chest. I hope you've got a good book on the go and some nice Garn for your knitting project. I hope you, Dave and Audrey are doing ok too. So pleased about your daughter Audrey. It's wonderful. Look after yourself a bit more now that you have a…
-
Hello all, It's been a while. I spend too long online, discovered Facebook... some nice groups, slow stitching... I used to embroider before. I'm not back there yet.. it's still nice to share about other things though. Unfortunately my feet are getting worse. I know where it'll end up again if it goes on. I'm going to…
-
Hi Michelleanne Have they got any further with a diagnosis for your chest problems? You've been so long without taste. That's really hard :( How's it going? Dave, I'm glad at least markers and tests are suggesting things are positive. I hope very soon you start feeling the benefits. Who knows... maybe you'll crack this…
-
I haven't been able to taste since june, july 2021. It's wonderful. I didn't even suffer any more, I just didn't taste things.
-
Good morning, I'm off for my ecp today. Looking forward to getting home tomorrow and feeling a bit normal. I had a meal out last night and could taste everything. It was amazing.. think I must be getting taste buds back. Let's hope it stays, at least a while. You're all with me. Thank you, I hope you're all at least ok and…