Thanks Michelle and Helen. I’m beside myself with worry this evening but your words of encouragement and sharing your experiences real help.
Hi Helen and audrey
I was the same with nappies , I also put things away in my mind , but I had a councillor afterwards through Maggies and macmillan and she helped us greatly , maybe that would help you all , it really helps to come to terms with it all
audrey I think you are doing an amazing job , I know you’re daughter will be internally grateful have you got some help or someone to talk to
im always her for you and your daughter keep strong
much love & best wishes
Michelleanne
Thanks so much, Michelle. She’s so thin and unwell. She’s also so uncomplaining like everyone else here.
Yes I have family to talk to. I’m also helping out with the wee boys so that is a nice distraction. I’m a half way house. She needs to get back to her family but she’s not strong enough yet.
I hope that you are feeling as well as can be today, Michelle. You are amazing - giving others so much support. Thank you.
Audrey xx
Hi audrey
i was told before my treatment what could happened , but no one can prepare you for it
it was the worst time in my life , things came very close a few times , and my husband was called in which I have just found out by accident
I lost over 3 stone in weight , our grandchildren are a godsend
keep yourselve well give her and yourself time
bestwishes
michelleanne
Hi audrey
hows you’re daughter doing , hope she feels a little better,
michelleannexx
Hi Michelle
My daughter has picked up a bit since Tuesday, thanks.
The enzyme part of her liver is causing problems . They think that it’s either the gvhd or one of the meds that she’s on. I think it’s the anti fungal one so they are going to change it to see if that helps.
She still had no appetite and they are keeping an eye in her weight as that is worrying at the moment.
However, because of yourself and other wonderful people in this site , we know that this is not unusual at her stage of recovery. I also have faith in the medics who are doing a tremendous job and keeping a careful eye on her.
Thank you for caring. I hope that you and everyone else have had a week reasonable week.
Helen - I’m really hoping the gvhd will abate soon and Beaglegirl, I hope that your husband has been a little better.
Best Wishes
Audrey
Hi Audrey,
your daughter sounds as she is doing very well with you by her side. Think a few weeks how she was in hospital and now she has a lot more life. When I went through my sct or Bmt I left the hospital still losing weight, I could not even keep the feeding tube in me and wanted to unfortunately be sick due to the sensation it gave me in my throat. I am about 18 months past the Bmt / sct stage and I still really have no appetite but I am now a lot heavier and put on a lot of weight more than I wanted to. Speaking or messaging other patients this can also be quite normal, that for some of us some of the symptoms take a long time to recover from. Unfortunately I started to add the weight when I went onto steroids for the gvhd, however I did manage before this to eat slightly more as my stomach slowly recovered a bit from the ordeal with the chemotherapy it went through. Remember in the conditioning therapy before transplant the chemo is designed to kill every fast multiplying cell between your mouth and where you excrete so a lot of damage is done. So as well as your body repairing this damage it is now coping as well with a new immune system and the problems that also brings, so a lot of issues from the transplant can take a long time to resolve. We all unfortunately have to be patient after transplant for things to rectify, or give them a good chance whether they are from gvhd or not. For now we have to be happy that we have got through the ordeal we just have. I am sure we all celebrate how your daughter is now from where she was a short while ago. Keep up the good fight as everything will get brighter and better.
Hi Dave t
i was exactly the same , and 2 yrs on I still struggle with my appetite , but I totally agree we have all come a very long way from where we were
best wishes
michelleanne
Hi Audrey
so pleased to hear ,your daughter is a little better , I had problems with my liver I was very jaundice , they didn’t know no what caused it
you are doing amazing , we couldn’t do it without the love and support of loved ones
keep strong , please keep in touch
hope all is well helen & beagle girl
best wishes
michelleanne
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 down. I can watch a whole programme on tv and follow the story. I’m not yet back into reading, but can play a board game, even two rounds. My gvhd seems to fluctuate… one step forward two back , ie. Not lineal improvement, eyes, oral, lung, skin, liver. But my fatigue is lots lots better.
Thanks Dave for pointing out we’ve come a long way, I have a lot to be thankful for.
About the liver gvhd Audrey, I take ursofalk 250mg 3x daily.
Sleep well,
Best
Helen
Hi Helen , Dave audrey
helen you are doing amazing , you are right it is one step forward and two back , keep up the good fight
best wishes
michelleanne
Hi Dave, Michelle and Helen,
Thank you Dave for sharing some of your journey. It really helps to know what others have gone through and I’m so glad that things are slowly getting better for you. Also for explaining and reminding us just how much you’ve all been through and how it requires so much patience and how symptoms from the transplant can take a long time to recover from.
Helen, it is so good to hear how much you have improved since coming home and and just how far you have come. I know you are still challenged with the gvhd but you are doing amazingly well and sharing your journey ( along with Michelle and Dave ) have really helped my daughter and myself.
And Michelle , thank you for always being there for us all, sharing your story and encouraging us all.
my daughter is still at the start of her journey. She wants to run before she can walk and is very frustrated at being able to do so little. However, she will get there and I can say this because if the wonderful support you all give each other and myself.
?
Hi audrey
it is a very long journey , harder for some than others all depending on our treatment , we will all get there , with a fight and a lots of love and support .
this forum helps me greatly , reminds me of what a wonderful world we live in and that there is selfless people in it , that gives people the gift of life ,
I will always give support and send lots of love and best wishes 
michelleanne
Hi Audrey, Michelleanne,
I can’t agree with you Michelleanne about our recovery - it’s as good as our treatment. I have an excellent university clinic only 8 miles away. They can offer me great treatments and I have a super doctor and team.
I have chronic gvhd in many organs and it can last for years. There are treatments but they are all for the symptoms, the cause, gvhd, the medical researchers globally, are working very hard on.
Just to put you in the picture from my side, the professors said my leukaemia was brought about by unnecessary radiotherapy (breast cancer) which my other doctor explicitly said was not necessary and I’m now living every day as it comes. My goal is just to get through the day. Apart from my dear overworked, stressed hubby, with his own life to lead, I’m socially isolated and with my granny walker at the best of times, quite immobile. I just want a bit of honesty here. I’m blessed with so much but it is very very tough. They just don’t know when/if my gvhd (Graft versus Host disease) will end.
It is as it is and I’m trying my hardest to be in the now.
I hope your daughter is making progress Audrey. And thank you so much, both of you, Michelleanne, for your very very valuable support. You can’t imagine how much strength I get from it.
I think you can feel from my post here that I’m having a bit of a rough time at the moment.
Kind wishes to you all.
Helen
Hi helen
my leukaemia was caused by treatment for Hodgkin’s disease, intensive chemo and radio therapy,
i too have a fantastic team, it is the toughest battle , I’m the same , we don’t meet people apart from our immediate family and grandchildren
I’m so sorry you are having a bad time , hope you have a better day tomorrow , you can always message on this forum I will try and help and support you
keep well sending you lots of love and strength
michelleanne
Thank you so much Michelleanne,
I have a feeling that you really understand me which I’m deeply grateful for.
I’m glad I reached out. It helps so much to know you’re there, thank you.
Much love, and strength to you too.
Helen
Hi Helen
I totally understand you , what upsets me is people say you look so well are you ok now , I don’t answer them now ,
im so glad i reached out , I’m so happy to message you all , I just feel I want to give you a big hug
the kindness we are shown on this forum is wonderful
keep strong
micheeleanne
Hi audrey
hows your daughter doing
michelleanne
Hi Michelle and Helen.
Firstly, Helen , I want to give you a big virtual hug and I can’t say how sorry I am that you are having such a rough time. Although I am fortunate enough not to suffer from this cruel illness, I go though it daily with my daughter and know just how challenging every day is. I also can feel both you and Michelle’s strength of character and know that you will have days when things don’t seem so bad. You are both remarkable to be in this forum and support others like myself despite what you are going through. I am truly in awe of you both.
my daughter is doing as well as we can expect. It is very early days in her recovery and I can see first hand all the challenges which she is facing. The gvhd ( in the bowel ) is causing most of the problems at the moment. They are keeping an eye on a virus which we all evidently have but the healthy body can keep at bay whereas my daughter’s immune system has not kicked in yet.
The good news is that she is going home to her family next week. We live close by so will be able to help as much as we are needed.
As a close relative, I am constantly on high alert, over worrying but trying not to fuss my daughter. I’m sure that you can relate to this.
I hope so much that you both have a peaceful Christmas. Thank you for being so honest about how you are feeling. It breaks my heart that you should all have to go through such a life altering, roller coaster illness. Please always believe in yourselves and realise how much you are helping others even when you are struggling.
Love to you both
Audrey
Hi audrey
i hope the gvhd eases , she’s a strong fighter and you are doing amazing looking after her
my husband has turned into a amazing nurse and carer for a man who has never had to do anything , he cooks , washers everything , he puts up with a lot .
it’s wonderful news that’s she’s going home for Christmas , I hope you all have a happy joyous time
please keep up with the updates
i wish you all peace and happiness lots of love
michelleanne