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HelenSpeedwell
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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…
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The heart problem must be worrying. I had very high levels of potassium in my blood cos I was eating so many bananas cos of the gvhd mouth. Too much potassium can lead to heart problems as can too little. I went from too little to too much.
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Something great to report, my mouth gvhd is maybe subsiding. I woke with natural moisture in my mouth this morning for the first time in months. Only this last Tuesday was told I have the gvhd in eyes, mouth, liver, skin and genital but thankfully the bowel gvhd has subsided. A little ray of sunshine, much appreciated.…
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Hi Audrey, my bowel gvhd was 4th grade and lasted about a year and is thankfully over ( check out lactose intolerance too). I now have mouth, eyes, liver and skin reacting against my sponsors stem cells. But A wonderful bit of news, I woke this morning and could move my mouth, its actually got moisture in it for the first…
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Hello Audrey, keep hanging on. I'm sending compassion and love.
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Best of luck lyndsey. I'm in it too if it helps to know. They're trying to reduce cortisone and so increasing ruxolitinib. The fatigue seems less but mouth, skin, eyes problems seem to not be improving yet. Worried about weight loss.
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Having flue jab and covid together might have been ill advised (we'llnever know). My hubby (fit and healthy) had his flue jab last week. And he Reacted with mild symptoms. He wanted the covid one with it but was refused on grounds of too much for the system. If fit and healthy get it refused, I'm sure it's too much for me.…
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Hi Otterfield, I'm glad to hear our comments helped. A magic wand would be better but it's just accepting it that helps for me too. Haemoglobin values vary for me, thanks for that info, I'llbe aware of it in the future. Yesterday discovered tinned veggie soups.. asparagus, mushroom etc. Best, Helen
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Dieseldrinker Totally support your comments , thank you for sharing, i put broken up weetabix in a bowl with cold milk in the microwe for 30 seconds low heat and stir and then I have a good sort of porridge. Perfect when I need to get out the door quick.
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I had the covid jabs after the sct. I am pleased I did. What's Important afterwards is your "teeter" blood value which shows how much protection you have. They were really impressed with mine which made me happy.
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Thanks dieseldrinker... the flue jab went well. It was half way between a two week break from the ecp and the clinic team said that it was better to have a break between the ecp.
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Hi dieseldrinker, I'm off for my flu jab today. I heard from others there's no reaction. Hope so.
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Hi Michelleanne I for one can tell you I'm with you and from my little experience , we'renot alone. It's awful I agree, but your little bit of positivity helped me too. Thanks. Reading simple, compelling text/fiction/biography helped me cognitively recover, and watching films, but I couldn't do it early on. It a bit of…