Quality or quantity?

I did hear about some GVHD being a good thing! It seems crazy to want to be in pain but I would would worry if I didn’t get it …amazing to know it could literally be anyone in the world…

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Just thought I would give a wee update. Thanks to all who replied to my post. I went to visit the transplant team at QE in Glasgow. Turns out I have 2x 10/10 matches. One being a young male who they are going to pursue. I feel Releived although it makes everything feel so much more real. I will be going ahead with transplant , could be as early as mid July. I’m feeling really lucky. Still early days though so fingers crossed all the health checks go well with donor! I asked all my questions and felt everyone really took the time to answer them. Was also shown round the ward which made it all seem a little less scary x

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Gosh, what brilliant, but I expect a bit scary, news. The whole appointment seems to have gone well and your medical team did their best to ensure they answered all your questions and tried to put you at your ease and prepare you for the way forward, hopefully. I cannot imagine all the fears, thoughts and feelings going on for you. Please do keep posting how you are and your fears, thoughts and feelings as we are all here to support you. Take lots of care of yourself and perhaps just give yourself time to process what is going on for you.

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Thanks Erica, Yes yesterday was a bit of a blur but waking up this morning I’m feeling a bit more possitive x

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Fantastic news to hear 2 matches were found, that’s amazing! How are you feeling now, ahead of the transplant? So pleased to hear you had time to ask questions and get answers, and look round the ward. Was that something you asked for or did they offer?

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Thanks, feeling a bit better about it although just had my hick line put in yesterday didn’t go straight forward and I’m feeling a bit sorry for myself haha atleast it’s in now! It was just by chance one of the nurses from the ward was down visiting the doctor and because she had time offered to show me around. Still finding it hard to believe I have matches and this might really be happening…

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Hi Goody, I think it is OK to feel a bit sorry for yourself when your hick line didn’t go in in a straight forward way and also finding it difficult to process that matches have been found and it might really be happening, it sounds a whole new mindset. Please be kind to yourself, have the odd treats and take lots of care. Please keep us posted we are all here to support you.

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Thanks Erica, I will keep updating!

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How are you finding this waiting time @Goody - has anything helped you feel ready for your transplant?

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Hi Dawn, currently 2.5 weeks since last chemotherapy so it’s the best I’ve felt since this all began. Although we went for a big walk with the boys today and was very quickly reminded of how unfit I’ve become since starting treatment. My heamoglobin is low so that has alot to do with my breathlessness but I’m hoping to one day be back enjoying big long walks as a family. I’ve started having my pre transplant checks, dental, respiratory etc so starting to feel like this is actually happening. The first date has been offered so waiting to hear if that will be accepted, which means I’ll be admitted on 11th July. I’m trying to see some friends before I go as I’ve not been up to socialising since starting treatment. Really looking forward to seeing them now. I do feel more possitive about the whole situation but I would be lying if I said I wasn’t scared of going for transplant. I’ve been lucky enough to be seen as an outpatient for my treatment so this will be my first experience in isolation away from my family. Hope you are well x

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Hi Goody, I am glad you are feeling better. My usual trick is I feel better and then I overdo it, I never learn. The saying that the best things in life are free is so true. The enjoyment of going for a big walk with the boys and seeing friends is priceless. Gosh it sounds as if your transplant is really becoming a reality now and I think it is very natural to feel scared. I wonder if anyone can share their experiences, what worked for them etc.? Conversely, when you feel up to it, perhaps you can let us know what it is/was like mentally and physically for you? We are all here to support you, take care.

Dear goody, I was pleased to read you’ve got your provisional date for transplant. The waiting is frustrating but they want to make sure you are in the best possible condition to get the very best outcome. As for being isolated it’s worth starting to plan some things you might need during your stay. After transplant it’s important to get a daily routine going no matter how slow things might be as it will be a good way to build your strength up and keep things moving internally. I would recommend taking a a nice warm fleece throw as it’s important to get out of bed for part of the day and sit in a chair, hospital blankets are not very warm and maybe bring your own pillows. I hope this is helpful.
Best wishes alfie

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Thanks Erica…Enjoying spending time with people really is priceless. Yes will update once I’m through the other side…

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Oh great tips Alfie thanks. Would really like to have some kind of routine that I can stick to. I will have a wee pull out bed in my room for my mum or husband to stay with me which should hopefully break my stay up a bit …

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Wonderful tips thank you Alfie!

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