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
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.
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.
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.
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.
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.
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 ❤️
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.
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
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.
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
I just wanted to get in touch and let you know that we here at Anthony Nolan we offer our telephone emotional support service, not only to patients but families as well..
Find out more about our Telephone Emotional Support Service on our website: www.anthonynolan.org/tess
Alternatively you can call our helpline on 0303 303 0303 or email us: [email protected]
We're here for you, like you are here for each other.
All the very best,
Liam
thank you very much for getting in touch Liam. I live abroad so the Hotline number doesn't work for me.
I've given the number to my mum but she said it's all a bit too much for her at the moment and she'll be in touch when she's ready. She was grateful to get the number though and was able to make a small donation.
As you've seen from this thread, it really is a fantastic resource for emotional support. It's helped me enormously and will continue to I'm sure. I don't know how people in the past got through this without the chance of making contact and sharing with other sufferers.
Thank you all for your kind, supportive messages over the past months . I feel as if I have gained such good friends on this site.
Helen, I’m so sorry that you are struggling just now. As an onlooker and also very involved with my daughter, I see that this illness is like a roller coaster. One day at a time and I hope that the roller coaster flips up for you again very soon.
Im sending lots of Christmas wishes for everyone and hope that you all manage to enjoy the day.
my daughter is at the start of her recovery. I worry but I can’t believe that we’re all going to have Christmas together. You are all in my thoughts.
I am so glad your daughter is making progress. I understand it may be slow but it is progress. A long way from where she was in hospital originally and you also now sound a bit more upbeat.
I am a bit like Helen at the moment ie very up and down. This is a result of the gvhd not so much from the chemotherapy or the cancer, it is a side effect that many get as a result of the bone marrow transplant and can go on for a long time and can also fare up when not expected and it just seems to go on with no real notice of improvement in your condition, however it is supposed to get better in the long run. It started for me 6 months approximately after transplant which I did not expect. Some persons do get little or no side effects. Anyway it is good you have your daughter at home for Xmas so she can feel re energised being around the kids. Hopefully day by day she will improve. Baby steps as they say.
I hope that you all had the best Christmas possible and I wish you all a happy and healthy New Year.
Helen and Dave, I have been thinking about you and so hope that the gvhd eases off a bit soon and that you both take more forward steps in the next few weeks.
My daughter managed to spend Christmas with her little boys which was wonderful. Unfortunately she is now back in hospital but hopefully it won’t be a long stay. She had a heavy cold which went into her chest. Her lungs are still weak from the pneumonia and she also developed conjunctivitis. Then her temperature spiked so it was back in to hospital. They’ve got her on intravenous antibiotics and she’s been given bloods and platelets so she is being taken good care of. Like yourselves, Dave and Helen, it’s the gvhd thAt’s causing her ongoing problems. She had very little appetite and what she is eating is just padding through her.
How I admire you all, the way that you have battled through the transplants and continue to deal with ongoing symptoms.
I really hope that you all have a good start to the year and want to say again how grateful I M to have discovered this site and “met” all if you who I feel have become my friends.
Comments
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
Hi Audrey, Michelleanne, Helen and Dave
I just wanted to get in touch and let you know that we here at Anthony Nolan we offer our telephone emotional support service, not only to patients but families as well..
Find out more about our Telephone Emotional Support Service on our website: www.anthonynolan.org/tess
Alternatively you can call our helpline on 0303 303 0303 or email us: [email protected]
We're here for you, like you are here for each other.
All the very best,
Liam
Thankyou Liam
that’s nice to know
best wishes
michelleanne
Hi Liam,
And hallo Michelleanne and Audrey,
thank you very much for getting in touch Liam. I live abroad so the Hotline number doesn't work for me.
I've given the number to my mum but she said it's all a bit too much for her at the moment and she'll be in touch when she's ready. She was grateful to get the number though and was able to make a small donation.
As you've seen from this thread, it really is a fantastic resource for emotional support. It's helped me enormously and will continue to I'm sure. I don't know how people in the past got through this without the chance of making contact and sharing with other sufferers.
Best wishes,
Helen
Hello Michelle and Audrey,
I hope we are able to enjoy our blessings in the next few days. They are so few but all the more special for it.
I seem to be taking steps back at the moment. I can only be in the now because everything else just annoys me.
You are blessings to me and for that I'm very grateful, I wish you peaceful holidays,
Helen
Hi helen
we will count our blessings , in our own way and in anyway we can , try not to look to far forward , enjoy one day at a time ,
I know what you mean about things been annoying I feel like that sometimes ,
im sat thinking about my donor , wondering what he’s doing , and what a wonderful thing he did for me .
you are a blessing too and a great help
i wish you you and yours a very happy and peaceful time
take care I’m here if needed
best wishes
michelleanne
Hi Michelle, Helen and Dave,
Thank you all for your kind, supportive messages over the past months . I feel as if I have gained such good friends on this site.
Helen, I’m so sorry that you are struggling just now. As an onlooker and also very involved with my daughter, I see that this illness is like a roller coaster. One day at a time and I hope that the roller coaster flips up for you again very soon.
Im sending lots of Christmas wishes for everyone and hope that you all manage to enjoy the day.
my daughter is at the start of her recovery. I worry but I can’t believe that we’re all going to have Christmas together. You are all in my thoughts.
Best Wishes
Audrey
Hi audrey
You sound so much brighter than you have in the past few months , I too feel I’ve made some amazing friends on here ,
enjoy you’re Christmas I wish you lots of happiness , love
I’m always here if needed
take care
michelleanne
H Audrey,
I am so glad your daughter is making progress. I understand it may be slow but it is progress. A long way from where she was in hospital originally and you also now sound a bit more upbeat.
I am a bit like Helen at the moment ie very up and down. This is a result of the gvhd not so much from the chemotherapy or the cancer, it is a side effect that many get as a result of the bone marrow transplant and can go on for a long time and can also fare up when not expected and it just seems to go on with no real notice of improvement in your condition, however it is supposed to get better in the long run. It started for me 6 months approximately after transplant which I did not expect. Some persons do get little or no side effects. Anyway it is good you have your daughter at home for Xmas so she can feel re energised being around the kids. Hopefully day by day she will improve. Baby steps as they say.
Happy new year to you all, and all your loved ones.
Helen
Hi helen
happy new year , to you all we wish you health & happiness
michelleanne
Hi Everyone
I hope that you all had the best Christmas possible and I wish you all a happy and healthy New Year.
Helen and Dave, I have been thinking about you and so hope that the gvhd eases off a bit soon and that you both take more forward steps in the next few weeks.
My daughter managed to spend Christmas with her little boys which was wonderful. Unfortunately she is now back in hospital but hopefully it won’t be a long stay. She had a heavy cold which went into her chest. Her lungs are still weak from the pneumonia and she also developed conjunctivitis. Then her temperature spiked so it was back in to hospital. They’ve got her on intravenous antibiotics and she’s been given bloods and platelets so she is being taken good care of. Like yourselves, Dave and Helen, it’s the gvhd thAt’s causing her ongoing problems. She had very little appetite and what she is eating is just padding through her.
How I admire you all, the way that you have battled through the transplants and continue to deal with ongoing symptoms.
I really hope that you all have a good start to the year and want to say again how grateful I M to have discovered this site and “met” all if you who I feel have become my friends.