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Otterfield
Comments
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Thank you very much for your replies and sharing your experiences. It seems it's something I have to cope with for the moment, and I will try some of the things which have, at least partially, worked for you. It takes a lot of willpower not to scratch!
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Thank you so much everyone. Although it is of course still a concern and problem, you have helped me to see that it is normal at this stage. I have also noticed that it is worse when my haemoglobin is low though I'm not sure why. I am still having about four units of blood each week (the doctors have told me that blood…
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Hello Tim, I also have/had Myelofibrosis and have had the transplant very recently. I received my donor cells on 1st September and have now been back at home for five days. I can't pretend it's an easy process - actually the hardest thing I have ever done. I'm still struggling with my appetite and with nausea and vomiting.…
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Hello Pauline, I haven't had my transplant yet but I was in Southampton Hospital for seven weeks having debulking chemotherapy prior to the admission for transplant. Southampton doesn't allow any visiting at all on the haematology/transplant ward and my husband and I were dreading it. However, we found that because we had…
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Hi Rachel, thank you very much for responding and reassuring me. As it happened, when the CNS phoned back she offered to have a look at it the same day, so I went to the hospital and it was looking fine. It's too easy to start worrying about things when they are unfamiliar so I'm so pleased and grateful that I have found…
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Thank you very much to both Helen and Steve for for your kind and helpful comments (and for the video link, Helen). As it happens there is now some bleeding under the Hickman Line dressing which is worrying me, as it's now nearly three weeks since it was put in. I have left a message for the CNS team at my local hospital…
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I'm sorry - no advice but lots of sympathy as I am in a similar position. I was admitted for my treatment then heard that my donor had Covid. I am now waiting for a new date but feeling unsettled. I have been told the wait will be about four weeks, but I suppose if your husband has to have a new donor it may be longer.…
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Thank you Steve, It's great to know the support is here. Being in limbo, waiting for my donor to be well again, is quite stressful. I'm also trying to get used to my Hickman Line which was inserted before I got the news about my donor having Covid. It's still quite uncomfortable after two weeks. The CNS at my local…
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Hello Michelle, thank you for responding and it's nice to "meet" you. I spoke to my specialist nurse today and she thought that the delay would be about 4 weeks. I keep worrying that something else will happen to delay it. I guess that SCT provokes anxiety in all of us but it's really encouraging to have found this forum.