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HelenSpeedwell
Comments
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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.
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Hi Steve and Dave My ankles are going like the bands round your torso and walking is becoming more painful. To be honest, I think the ecp is affecting my mood too and bringing me down a bit. I have a therapist , thank goodness, but he's not super human but he is definitely better than nothing. I'm struggling at the moment…
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Hi Tim, I'm struggling 18months after transplant with gvhd... my body is fighting my stem cell transplant, but even for all this struggling that I'm doing, I'm alive! And that's indescribably good. Your post has helped me put things into scale, relation. I'm even having a bad day but I'm alive! I wasn't given a choice…
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Hello all, I'm still on my chronic gvhd journey and feeling imprisoned by it and lonely. I'm still gradually losing weight, no appetite and my skin on my ankles is making me more immobile. Maybe I have that nerve thing in the feet now too, polyneuropathie , which is keeping me awake at night. Any supportive comments would…
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Hello Auds, thank you for sharing your daughter's good news. It's really good to hear. Given ne a boost too. You're right, she's still on , we're all still on, our long journeys. So good to hear, thank you. Thanks Michelleanne too! Do please feel free to post whenever you have a need, however small. Best wishes Helen
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Hi Alison A good friend had to have a second sc transplant and spent a while on icu with it. I only had the one but am still suffering with chronic gvhd over a 18months later, he's even able to cycle and has put weight on and is working again. I don't think it's automatically bad to have a second one. It could be the key.…
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Hi Dieseldrinker62 Hi Steve, that's a good tip about the timing, afternoon and early, I'm going to try for that too although they want everyone early and finish early. Tomorrow morning is a late start at 10am. I'm delighted to read you're 7 years on... it gives me hope. Best wishes Helen
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Hi Dave, hi all, a general tip about dealing with fatigue, something that has helped me, or maybe it was a change of meds too... an app for cancer related fatigue... called untire. I downloaded it from google I think. It makes a difference. Best wishes to you all, Helen
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To treat my gvhd bowel they prescribed jakavi, ruxolitinib is the active ingredient. I'm now, 18 months later , on myfortic and jakavi. I take lactase , the enzyme, twice a day, cos the jakavi is made with lactose and not ideal for lactose intolerance like me. Thanks for your support too Michelleanne. We're with you and…
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Hope your mum's holding on ok. I feel that Recovery is a cruel word with chronic gvhd cos it's not like that. My fatigue seems to have gone but I'm slowly but gradually losing weight. I can only be in the present, the word hope frustrates me. It's tough. I really hope your mum keeps fighting it and can somehow keep…
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Hi Audrey, Listening to your daughter and just acknowledging and accepting her problems and feelings is already a huge gift to her even though it feels like nothing. It's validating and loving. We can't change things, if we could we wouldn't be here on this blog. I'm puzzled that they're taking their time because they did…
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Thanks Steve. I'll keep you posted. Best wishes Helen
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Hi Michelleanne Similar for me. I've been feeling very isolated for ages, but this afternoon after a long time of avoidance, visited friends with my hubby. It felt really liberating. We laughed, a rare thing. I spent the whole morning working towards it, eating, resting etc. But till now it was worth it. It's a very…
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Hello Audrey, A bit brighter, .. it warms me to here that. A little ray of sunshine through the clouds. For me too michelleanne, I don't know how the chemistry works but it helps me too. Maybe it's the togetherness and trust. We're right with you and your daughter Audrey.
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Sorry for my poor communication and thank you Michelleanne for putting things better. Audrey, I'm with you and your daughter. It's terribly difficult, I appreciate that. I'm sending trust and kindness, Helen
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Hi Audrey, just some info for your daughter... when I was briefly in rehabilitation, the psychologist gave a seminar and said something which amazed me... probably only from his anecdotal experience but he's worked for years in haematology onkology ... apparently fighters have a better survival rate. It's good that your…
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Hi Gail, it is complex, mine too. If it wasn't we wouldn't need this blog. Thanks so much for sharing, you give me strength without realising. Best wishes to all, Helen
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Hello Cottie, that's a really difficult one. As a sufferer myself (AML and sct june 21) and mum of two adult children I can hardly start to imagine where you are. Perhaps helpful to know, during my very long, still ongoing treatment I moved back in with my family after blocking them for quite a while. It was a therapist in…
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Hi Michelleann, thank you so very much for sharing. We're still here! Carpe diem as they say. I'm blessed with so very much, medical team, family, supportive friends. Still struggling on. The hardest days are those round my fortnightly ecp treatment, it makes me depressed but then I come round again. 8 months in the clinic…