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Auds21
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Beagle girl- try to stay strong. Your husband has and is going through so much. Speak to his consultant and hopefully he can reassure you. He has such a severe illness with all sorts of side effects to the treatment, illness and medication. I really hope that the doctor can put your mind at rest.
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Hello everyone and sorry that I haven’t been on here for a while. I’m being kept busy with the grandkids and we’ve had a very difficult week as the driver of the car which killed my son was charged and it was all over the media again Anyway, I have been thinking about you all and Helen, I’m so sorry that you are going…
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Hello everyone . Helen, I’m so pleased that you’ve had a little bit of respite from your symptoms although I know that it’s a constant battle . Michelle , I am just wondering how long you have been on the immune suppressants . I’m not sure how long ago it was that you had your second SCT . Dave I’m so sorry that you are…
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Hi Helen . Sending lots of hugs and positive thoughts that things get a bit better for you soon. It’s such a hard illness with so many ups and downs . We’re all here for you and I want you to know that you are in my thoughts .xx
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Hi Michelle and a very Happy 60th Birthday to you. I hope that you’ve had the best day possible . This illness is so cruel and puts you all through so much. You are bound to have lows and I think that you do remarkably well to always pick yourselves up and soldier on. Not only that but the help and support that you give to…
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Hello everyone. Beaglegirl, I am so sorry that you are going through so much worry with your husband. I can imagine how you are feeling as I have gone through so much with my daughter. You will keep worrying until he takes a step forward but please keep listening to the three wonderful people who are sharing their…
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Hello Beaglegirl i am sorry that I have been out of action while you have been going through this horrific time . I am so very happy to hear that it is not a relapse . I was going to say to you that when my daughter was extremely ill after her second transplant we were told to prepare for the worst. My son had just been…
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Hi Dave and thank you for your kind words. I so wish that I could wave a magic wand and take away all your symptoms and health problems. Also everyone else’s as well. Helen and you are having a particularly rough time. I really hope that tomorrow’s infusion will help you, if not immediately then soon. Im also thinking…
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Hello Everyone i think about you all a lot and know that every day is a challenge. I also know that you never give up and are so kind and caring to each other ( including me ) in this group. Helen and Dave, I really hope that you are both having some improvement of your symptoms and Michelle, I’m hoping that you are having…
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Hi Helen. I’m really sorry that you are still struggling. It seems to be so much trial and error until they find what works for you. Thinking about everyone and their daily struggles. Patience seems to be the key word, even for the loved ones of patients, as we so much want to see you all make good progress . Always…
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Hi Everyone Helen and Michelle - it’s lovely to “feel” the positivity in your posts despite all the challenges that you face on a daily bases . I think this cruel illness makes you all mentally stronger and Helen, it’s wonderful that despite what you are going through , you can encourage and be compassionate towards your…
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Hello everyone . It’s lovely to read all of your texts and it’s so good that you all feel comfortable enough with this group that you can share whatever you would like to say. I can see ( although probably don’t fully understand ) just how much my daughter has suffered emotionally as well as physically. All your lives have…
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Thank you, Michelle. I am very proud of all my kids . I feel as if I’m living under a big dark cloud but seeing my daughter get stronger is keeping me going. A day trip on the Flying Scotsman sounds fabulous . I’m sure it will be a great day and will give you lots of wonderful memories . I hope that you are resting your…
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Dave I am so happy to hear that your consultant is trying to arrange rituximab treatment ( although not sure what that is ) . I really hope that you get it and it helps with your legs and mobility. I think that anyone going through what you have all been and are going through , would have some psychological issues . You…
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Hello everyone Helen and Dave, I am so sorry that you are both struggling so much with the symptoms of gvhd. I think you are amazingly brave to recognise that the rehab will help you at a time when you need additional support to help you through this phase of the illness. We are all here for you . Dave, you too are going…
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Hello Everyone im so pleased that your ecp went well, Helen and that it’s given you a boost. Good that you’re booked in again. You are doing so well, going to your gymnastic class and being proactive in trying to help your wounds . Im sorry that you are having bother with your eyes and such pain in your legs, Michelle. I…
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Hello All Helen , I am so pleased that you are getting your ecp on Monday and Tuesday and I will be thinking about you and sending lots of positive wishes. I hope that everyone has had a reasonable weekend. Michelle, I hope that you had a quiet restful weekend after your busy catch up and Dave, I’m thinking about you and…
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Hello everyone . I’m so sorry that you’re all having such a tough time but I’m in awe of you all - talking about how you feel and being so supportive to each other ( including myself) . Helen, I really hope that they listen to you and will continue with the ecp. Keep at them until they see it from your side of the picture.…
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Hi everyone I am so sorry that you are all suffering with your eyes. The gvhd symptoms are so debilitating and I think you all do so well to get up each morning and keep moving forward. Helen, I hope that your ecp treatment goes ahead next Tuesday and thaT your skin and eyes calm down soon. Michelle, I’m sorry that you too…
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Thank you so much, Michelle. I’m sending a big hug to you and Helen and Dave xx
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Hello my friends Thank you for all your kind messages and support. I have just heard, and wanted you to know , that my daughters second biopsy results have come back and they are clear. I’m on cloud nine! I’m so so relieved that I want to cry. I really hope that you are all having a better week, Helen and Dave with your…
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Thank you both so much for caring about us. We will both fight this illness. i hope that you are both having a good weekend and enjoyed todays sunshine xx
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Thank you Helen. my daughter had a second biopsy yesterday. They’re planning on tapering her off the immune suppressants but will wait until the result of this second biopsy. i do feel so desolate but must remain hopeful. I lost my son last August and I can’t lose my daughter . my Daughter is amazingly strong and will…
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Hello Everyone and thank you for all your kind wishes for my daughter. She has already had a second SCT . I am so hoping that next week’s biopsy comes back negative . She has gone through so much and needs a break. The initial biopsy was alright but it’s the deep one that has shown something up. we had my sons internment…
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Hi Everyone You are all having so much to contend with and I think it’s amazing how despite what tug are going through individually, you all take the time and compassion to think about others. I can imagine how frustrating it is for you all to have to go at a much slower pace and not be able to do the things that you did…
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Hi Michelle Glad to hear that you are enjoying time with the grandkids. They really are a lovely distraction and hopefully the weather is moving in the right direction now for us to be all outside. I’m going to be kept busy with the wee ones during the holidays. Helps me to focus on things other than worry and grief.…
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Hi everyone . I have been thinking about you all and hope that the gvhd has improved a bit, Helen and Dave . I also hope that Michelle , you have been keeping as well as possible my daughter is back in hospital again. Fourth time since she was discharged in December . Her lungs are still causing problems so a bronchoscopy…
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Hi everyone Thanks so much for all telling about your “ food” journey. It is reassuring to know that the problems with eating and food seems to be part of the recovery journey. Michelle my daughter is similar to you in that she seems to be craving sweet things and she didn’t have a sweet tooth before the second transplant!…
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Hi All It’s so good to hear from you all and the support that you give to each other and to me is wonderful. you all suffer from such a hard, debilitating illness and yet your strength and personalities shine through. Although it’s my daughter and not me who is suffering from this illness, I feel as if you are all my…
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Hi Michelle, Helen, Dave and Jan3 im sorry that I haven’t been here for a while . You have all been and are going through so much but how I admire your resilience and strength to get up and function every day. Dave, although you feel despondent that you are “ doing little”, believe me, you are doing amazingly well to get…