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HelenSpeedwell
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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…
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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.
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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…
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Hello, thank you for your kind words. After my appointment I researched an online course I did before the leukaemia diagnosis and tried to find it, it did me so much good that first time around. It was a free online course on the futurelearn platform about mindfullness and self compassion. I did find it, it's still there,…
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I saw my GP today. I was a bit worried about being forgetful and anxious and very low recently. I also find it difficult with the language, as you know. She was great. Really took time. I thought I might need a check up with a neurologist, but she said, she doesn't have another patient who's been as ill as me and that it's…
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That's nice. I bet she's pleased you've found support here.."in your pocket". I think of her sometimes... she has two boys right? In my head they're about 6 and 8. Funny how we just fill in the dots. I tell hubby about you all too. It certainly helps him to know you're with me. He feels sooo overwhelmed by it all so often,…
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Hi John Is it muscle weakness or skin/joint fibrosity? Welcome! By the way ... Looking forward to sharing. I had my sct 2021 june. Nowhave cgvhd. Hope you're stable . Helen
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That's terrific news Audrey, she's young, she going to get this, beat it. Your news is inspiring, thank you so much. It's not easy to share things here that are soo good because we're struggling so much. You've really cheered me up! How wonderful for her children.... and of course you... and your daughter... and all... and…
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What a kind message Dave, I agree. He's right Alison. I would try not to have the drink in the house... as soon as it's a decision.."do I or don't I", we're lost. I think lots of us have had phases in our lives where addiction has been a potential problem. Don't go down that road, it goes nowhere. You're in such a…
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Hi Dave, I've checked out your message with photos.. it's something from Whit Davies. Is that right? There's something else from you but I cant open it. In the light ... or darkness of my downer last night... I checked out 'side effects' from my recent antibiotic and was 'relieved' to read ... depression and anxiety... so…
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Thanks again Dave, you we're really helpful, Audrey , Michelleanne, Alison, all of you. Today is another day. I was sooo lucky you checked in Dave. Love to you all, Helen
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That's so nice that you checked in Dave. I've been on a real downer tonight, but am gradually finding my way to a place of calm. It's so horrible this. It makes me feel sooo isolated... it's horrible. But I can't go back down the slope... I'll get off and try to do something sensible. Distraction. Thanks again. Thankfully…
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Hello you lovely bunch, Happy.. at least peaceful Easter. Lovely to hear from you all... . We can't always be on the ball here...we actually need to get on with life too:). I gave myself a mobile phone ban recently... I can spend too much time on it. It did me good. I was delighted to hear about the jeep and your Dad…
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I hope it's not cgvhd lungs.. but you'll beat that too if it is. I hope they can find a diagnosis soon. It's horrible not knowing. Sleep well and love to you Michelleanne, night night all, Helen
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Hello Audrey, Michelleanne, Dave, Alison, I've been thinking about your daughter Audrey, .. and all the infections she's picked up. I suppose because since January I've had so much ... the rsv virus, bladder infection, acute gastroenteritis, and I'm realising just how very vulnerable we are to infections and the enormous…
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I'm off in the morning to my first ecp since january. Unfortunately I'm on antibiotics for a bladder infection, so I hope I'm allowed it. Have a peaceful week all of you, only nice surprises. Sorry, this is just a quicky, no time to read through your posts ... hope you're all stable. Love to you all, Helen
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Thanks Michelleanne, definitely. I think the doctor in the rota at the moment is unfortunately quite challenged by his work and not very present because he doesn't feel very confident. I was just lucky he wasn't there. I've heard too often from other doctors " oh , I don't know what has happened there, we'll have to get…
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Thank goodness my usual doctor wasn't there and the replacement was super. Listened carefully, took time, very present and focused. She said something seemed to have gone wrong about my ecp and then her boss came in (she had peeped her) and she said that she couldn't see an acute reason to restart the ecp but because of my…
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I'm off to the clinic this morning to plead my case for my ecp to continue. Taking hubby along cos he's a native speaker and I'll need the support. I'll keep you posted. Thanks for being with me you lot. You're with me there too, especially for this appointment. Love Helen
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Morning all, I agree Michelleanne, it's our turn to be our best... they gave us the gift of life with the stem cell transplant. Interestingly, last night , hubby met a close friend who also had a sct in the same clinic as me, .. two actually, the first didn't work. He, Christoph, has no gvhd but lives in fear that the…
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One of my favourite quotes from the actor Robin Williams: "A friend is someone who listens to your bullshit, tells you that it's bullshit, and listens some more." That's one of the great gifts of this group. You keep me in check, night night. X
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Thank you so much for YOUR kind words Alison. As I said to Michelleanne, I prefer to keep my focus here with our little trusting group at Anthony Nolan. I'm maybe not so good at spreading myself about. This group is very special to me and I hope it stays like that for a while longer. I'm sure it'll change at some point,…
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Thanks Dave, for your honesty, you give me strength. That's more or less where I am now. I do nothing, can do nothing, neglecting any contacts that are still hanging on, which is getting fewer and fewer. ... I'm getting better at Sudokus. They say to combat stress it's good to learn something... my learning was Sudokus.…
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Dear Alison, words aren't helpful here. Your and Martin's loss is so painful and unjust. You're understandably in a very dark place. Nothing I say could help. I too am at the mercy of doctors who will make mistakes because they are human. Unfortunately and also fortunately for me I'm at a university hospital which trains…
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Thank you Michelleanne. I hope you're finding some peace. Much love Helen
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Hello all, hello Audrey, Michelleanne, Dave, Alison if you're around ... hope so, So sorry to hear that about your daughter Audrey, She's in the best place, but such a shame. I hope they can get her temperature down. Is it viral or bacterial, the cough? A cough is so exhausting too. Say hello to her from me ... even…
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We really do seem to be in this place together. My goodness, it's so helpful for me. Thank you Audrey for telling me about your daughter's admittance to the clinic for the RSV. It seems to relativise it a bit. Par for the course so to speak. I can't imagine what you're going through with it Audrey. And then your…
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Thank you dear Michelleanne x
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I've been struggling, I'm a bit worried this could be setting of some new gvhd, or making mine worse. I lost my positivity this afternoon. Thought of you all. Alison, what a hero you are and what a hero Martin was, Audrey, you and your daughter, Michelleanne, your endless chest problems and gvhd, Dave, your endless stuggle…
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Hello all, Audrey, I spoke too soon.... I was brought into the clinic in an ambulance with the emergency doctor yesterday very early. It's dawned on me that they're being very vigilant with your daughter. The fact she's in hospital so often shows how vulnerable she is and therefore they're being very careful with her. I…