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HelenSpeedwell
Comments
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Hi Dave, that sounds rotten with the secondary cancer. Hope it's under control. It sounds like you're doing the best you can under the circumstances. I'm amazed how well you were doing... 2 steps at a time...I can only dream of that. Thanks for sharing and I think you have plenty to be proud of. It's an up and down with me…
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Hi Dave, tingling, numbness, burning, I know all these sensations that you describe. My ankle joints are hard inside too which makes walking hard and nerve damage in the feet too and the skin is broken and hard and thick. With massaging, lots of moisturiser, at least I get a feeling I'm helping, but I don't think it has…
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Hello Dave, Michelleanne, Audrey, When I arrived home in Feb this year I was still losing weight and now I'm managing to maintain, and trying to increase. I could hardly do the stairs, but now I can with one hand on the banister and something in my other hand. I can make my food without a low blood sugar emotional break…
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Thanks Dave, I hope you can build up a bit of strength, maybe walking round the front room and extending number of circles... or the stairs. Thanks for being with me in spirit, feels supportive, I'm with you. Helen
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Hello all, I'm in the week between ECP treatments and at last feeling emotionally a bit better which gave me the energy to eat something and get out and go for a walk in the cold. I was out with my granny walker, got briefly chatting to a couple of people too, only a few words, but it lifted me, the walk and nature too.…
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Hi Dave Not ethically ok about the jakavi, more about money than health :(. (Just for info.. I pay a fortune every month for my state health insurance here in Germany, but I don't think I'm average case. ) Hope ECP continues to bring you positives. Helen
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It's nice to get some sort of positive news Dave, thanks for sharing. Thanks for the info about flare ups coming quick. I'm off steroids now. Have Myfortic and jakavi and valaciclovir or whatever it's called. Sounds like a good plan for you from your doctor. Best Helen
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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?