Great to get an update. Sore mouth and tongue doesn’t sound fun so I hope that improves soon. Sending extra special wishes your way X
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Oh @Suey thanks so much for updating us.
Day 9 and I am glad you are feeling more like yourself despite your very sore mouth/tongue.
Last weekend sounds scary for you though.
What a very good way of looking at it yes, let’s hope that you are closer to going home than coming in !!
Happy Easter to you too, you will remember this one in the future.
Look after yourself
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@Suey, you are doing well. It’s really a tough few days from the chemo and the anti-thymocyte globulin and ciclosporin etc. Things ease. Your mouth can be helped and bloods will gradually get better. Have fingers crossed really hard for you
@Summertime i hope you have managed to escape and are at home for Easter. Sending huge hugs.
Stay well everyone. I’m off for another covid jab this afternoon 
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Home today 
Happy Easter everyone xxx
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So glad you are managing, despite the rigours and sore mouth, @Suey. I know how awful both those side effects are - you are being very brave about it. Wishing you a gentle and speedy recovery.
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Happy Easter, @Summertime! So glad you’re home for it. Hope you’re feeling strong enough to enjoy a choccy egg or two and some home comforts. Are you feeling better? Really, really hope so. X
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Oh I am overjoyed for you @Summertime Easter and Easter eggs at home sounds wonderful for you.
Be ever so kind to yourself and spoil yourself.
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That’s just the best news! X
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Home Friday, enjoyed lovely evening with hubs. Woke up Sat to bleeding:pleading_face:
so I’m back here:pleading_face:
Saw my girls tho which was lovely.
I don’t understand why this happens. I wonder if it’s the bumpy ride home.
I have a prob with platelets keep dropping too so they are looking at meds. They are as puzzled as I am again.
Of course, bleeding stopped again now.
I am going to have feeding tube as I need to get weight on and stronger
Xxx
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Oh my goodness - I bet they are baffled. It just doesn’t seem to make any sense does it.
I’m glad you got to see the girls which must have been lovely. It must be so hard for all of you. Can your husband visit now?
I know you wasn’t looking forward to the feeding tube but hopefully, it will get you the nutrients you need and build your strength.
Probably a silly question - but how are you holding up? X
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No he can’t visit as still on covid ward. I’m doing ok, I have a nice quiet room with a sunny window. Thank god for small mercies xx
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@summertime just read the thread and was so happy you were home only to read a second later that you are back in hospital again 
I dont know what to say other than get stronger and keep going. Hope they can get some Easter Eggs down the feeding tube 
xx
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Oh @Summertime, I’m so sorrry. This is unrelenting. You sound fairly calm, considering - which is a major achievement in itself. I don’t know how you do that.
Perhaps it’s a good thing they’ve identified that your platelets keep dropping? If they can get and keep them up, you might be in a better place.
Really glad you got to see your girls and have at least one lovely evening at home.
I’ll be keeping everything crossed this is just a short stay, and the one that solves this problem.
And good luck with the feeding tube. Hopefully, it will do the weight trick. X
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Oh @Summertime you really sound so, so philosophical unless it is because this forum will not let you post the words you really do want to say.
I am so glad that you saw you husband and girls in your whirlwind revolving door trip home again.
So they still haven’t sorted out your bleeding problem (I thought I might not be able to post that !!!)
Please let us know how the feeding tube is and you are.
My loving vibes don’t seem to be helping you much although I am certainly not going to stop sending them.
xxxxxxxxxxxxxxxxx
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Summertime I really don’t know what to say. Low platelets do make bleeds more likely, but a slightly bumpy journey shouldn’t cause such problems 
, can they give you a platelet transfusion? Sending the hugest hugs?? Xxx
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Really glad to hear that things have improved for you @Summertime . You’ve had such a rotten time.
@Suey I can completely identify with what you’re going through.I was sore for over a week and could only eat jelly and ice cream as they melted in my mouth and didn’t need much swallowing. I was lucky it was Wimbledon fortnight though so I had something to distract me until I could go home.
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Yesterday they decided I could have hub visit. Today he’s tested positive 
He must have got it from me on Friday so now he can’t visit…
I’m having feeding tube this week
Consultant thinks it is gut Graft-versus-host-disease and is increasing steroids again and introducing a new clotting med.
I’m bleeding a bit again and he says this is why platelets keep dropping 
I am keeping calm, binge watching The Split
Xxx
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Oh my goodness. I hope your husband is doing ok?
Great series to binge watch. I just loved it!!! I laughed and cried so much.
As always - we all send special wishes and keep everything crossed that things start doing in the right direction X
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Oh @Summertime you could not make it up, your poor hubby, I feel I know him so well, please send him my best wishes.
Please let us know when you have the feeding tube in.
So sorry to hear the you are bleeding …again.
I really enjoyed The Split too, I think you needed to see the previous series to really appreciate the relationships.
xxxxxxxxxx to you too.
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Blimey, @Summertime, what a time you’re having. I hope your husband gets better quickly. And I hope the steroids start easing things for you soon. You must be so sick of all this. : ( X
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