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HelenSpeedwell
Comments
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Hello Audrey, Please remember what a fantastic job you are doing to help your daughter. Maybe she'll do what I've done and block a lot of it out of my memory. I was in nappies for months with acute bowel gvhd, kept nothing in, no control. It is a haze now which is a relief. Big hug to you and your daughter, Helen
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I just hope you start feeling better soon Dave, me too. I reckon too much info is not always emotionally helpful... the other patient with the increased steroids. None of us know what's round the corner. It's nice to know we had our sct about the same time, both ecp, both gvhd..... almost enough for a club... LOL. ... I'm…
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Hi Auds, Just hold on, it's such early days. It sounds you are the best compliment to her sct team. So challenging, no one else can imagine it. You and your daughter are a super team together. Yes Michelleanne is right, and it also helped me from this app (this chat) to hear that I need to tell them everything too. Helen
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They find it hard to lay the needle for me too. Remind me again please Dave, when was your sct? Mine, june 21.
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Thanks Dave, I just said to hubby , if they'd told me before they hooked me up to the stem cells' "this is going to make you suffer for years, but there's a chance you'll get through it, and there's no other way' " , I would still, even with this terrible endless suffering, have said, yes please, I'll do it. I'm really…
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Hi Dave, yes, uncontrolled muscle Spasms with jerks. But it feels like a little bit of electricity sets them off. It's much worse after, and an hour or two into, the ECP, and the day or two after. It's also noticably worse with stress and tiredness. When I look at my ankles, the skin looks like it's rotting, the big toe…
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Hi DaveT How's it going with your symptoms? Have you found out if it's neuropathy? Best Helen
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Hello Beaglegirl I don't have experience of this specifically. Sending you energy and love. It's terribly hard for you both, big hug. Helen
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Hi Audrey I'm impressed too that your daughter can eat a little of what you're eating. I was , and still am, very fussy. At first I needed to eat about every two hours or I started noticing lack of energy. That made me very tearful in the beginning cos I wanted to prepare my own food, difficult with no energy. I'm really…
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Hi Michelleanne I like squadgy bread with butter too, with plenty to drink to help it down. I couldn't eat bread for over a year so somehow I get a kick out of managing to eat it. It's like 'normal'. Helen
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Me again, I also forgot to mention I have fresubin. I don't know if you have it in the uk. It's like astronaut drink, unfortunately really expensive, but high calorific with necessary supplements. The other supplement Ihave from the clinic, is a powder, which I put in fruit tea with juice , it is called EnergeaP. The docs…
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Hello again, I forgot to say I take multivitamin and minerals too. When I came out of the clinic I was suffering officially from malnutrition.. a lot said for the hospital food. My mood picked up when I started on the vit+mineral fizzy tablet. Just the normal supermarket no name ones. Check it with the team first though.…
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Hi Steve, hello Aĺl, My GP suggested that I'm not strong enough for a cancer fitness group (it would be on the health service, not private) until I've built up more muscle. She suggests climbing stairs and standing up from a chair ... long term aim on one leg. I have physio 15 min session and he manipulates my ankles which…
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Thanks very much Dave, I'll check it out. Best Helen
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Hello you wonderful lot. This string of messages has made me smile to read. I haven't been home a year yet. Was 8 months post bmt in ghe clinic. I almost crawled up the stairs in tears when I arrived. My diet is amazingly exactly the same as yours, really wierd, soup, ready brek, porridge ... and I even fantasised about a…
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Hi Steve and Dave, Thank you so very much for your help. You can't imagine how valuable it is. Good to know about possible time scale too. I'll mention it to the Dr's team. The nurses just said, no it can't be causing the sensation in the feet ,but I'll mention it to the Dr's team next time. The electric shock , burning…
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Hello all, Could it be that the ecp is making my polyneuropathie and gvhd skin worse? Stabbing pain and burning sensation in the ankles. Had the ecp yesterday and today. It's horrible.
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I got good support through the untire Facebook group. I can recommend it. Just an update here... Dr said yesterday, the gvhd is under control but it's not good enough. It was helpful to have the check up and hear her support. It calmed me. Best of luck to all you fellow chronic gvhd sufferers, you're not alone. Helen
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Hi Dave, Our recovery is not lineal, it's more like a scribble. I hope our journies end up moving forward in some way, even if it does take ages. Exhausting, Best wishes Helen
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Hi Dave I'm right with you. I had a really bad day yesterday, today a little better. That makes sense what you said about energy replacing old t cells. I didn't know that. I feel really sad after the ecp for 3 or 4 days, it seems to take ages to get energy back. You're right, patience ...and I'd say trust too. Trust that…
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Hi Dave Sounds like my experience too. something to add to it for me, I have recently got polyneuropathy and read I should try to eat less dairy and more unrefined cereal. I tried it (müsli) and ended up remembering my bowel gvhd which lasted about a year. My digestion obviously isn't yet recovered from the bmt, at least I…
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Hello Auds, I'm thinking of you. A very intense time. Sending positive, calm and kind energy.
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Hi Dave How's it going with the eating, food, weight?
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Thanks Steve, you've helped me (and my hubby) accept the situation better. Not easy but patience patience... the neuropathy doesn't help but patience will get me through this. Best Helen
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Hi again, Sorry. I meant Michelle is great... "particularly Michelle ) kept telling me how much my daughter’s team would be working in the background to get to the bottom of all the problems that she encountered and they were!" I get confused with the names here, sorry. Best, Helen
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Hi Dave, That would be great if it's true. Why not. It keeps me optimistic. Thanks. Best wishes Helen
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Hi Auds, great news about your daughter. I'm really relieved. So good for the boys too. Words aren't enough. I'm thinking of you all. Best wishes, Helen
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Hello Beaglegirl, Auds is right. They wouldn't suggest a second sct unless it could work. When you're in it, I can't imagine how scarey it must be but a close friend had a second one and 2 years on he's doing really well, back at work, normal for age/fitness assessment, cycling, putting on weight.. he feels a kind pity for…
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Hi Dave, What you describe sounds 1:1 like my ankles. It's new to me too. Last night put a cool pack on ankle and after a while could feel the cold. I have thick layer of flakey dry skin. I suggested to care team it could be neuropathy and she said, yes, it could well be. I have chronic gvhd and skin also now affected.…
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Thanks Dave, you've said lots of reassuring stuff which only someone who really knows could say. This gives me trust and belief in what I was losing.. patience. I'll keep you posted. Sounds like the skin with the ecp might well take ages. I'll see this one through too. Thanks so much.