Hi Auds, So pleased your daughter is out of hospital. I am following yours and others stories, as I visit my daughter regularly at her home in recovery. Keep updating on progress. It’s a rollercoaster and life changing. This forum helps so much x
Hi everyone . Thank for your kind messages and I hope that your daughter, Babs, is doing well in her recovery . it certainly is a roller coaster journey!
My daughter is home with me until she is strong enough to cope with her wee boys . She’s delighted to be home but is very weak and underweight. I think that she is disappointed that she can’t do more but I’m trying to reassure her that she’s been in hospital for 5 months , her body has been through the mill and it will take time to recover.
Her digestive / bowel problems ( prob gvhd) is causing a lot of discomfort although she’s very uncomplaining. Eating is a struggle and she is trying and I know this will also take time.
Helen, I have been thinking about you and really hope that the gvhd problems will ease off a bit soon.
I’ve learned so much from this forum and I honestly don’t know how I would have coped with everything without all your encouragement and support . I really hope that life will be kind to you all.
our next step is waiting for the result of the 100 day post transplant biopsy. A tense time but just trying to enjoy having my daughter here and focusing on getting her stronger .
lots of positive wishes to all of you and thanks for being here .
Hi Audrey, as time goes by the gvhd symptoms will hopefully gradually lessen. Hopefully bit by bit her diet will improve as the mouth and throat also improve but it will be slow as the body has so much to repair after the chemotherapy and replacing the immune system with a complete new one. I left hospital losing weight and once home I gradually put weight on and if she is on a high dose steroid this will also add weight. When you first start to eat it may not be the most healthy of diets I remember the first things I could eat were pot noodles and pies and pasties. Unfortunately your tastes change after a Bmt and your favourite items before the transplant you may not like after. I am 18 months past Bmt and my appetite and tastes are still repairing very slowly. I used to love to eat food and now I eat because I have to and also smaller portions as I cannot eat a lot, however I feel in the background this is very slowly improving as lately have managed to include more healthy options into my diet. It just takes a lot of time and patience and she will get there.
so pleased to hear you’re daughter is managing at home , I was exactly the same , take one day at a time , we are all at different stages . Don’t expect too much I found my eating habits have changed so much , I eat what I fancy , I lived on soup , ready brek and milky coffee
I still don’t eat a lot , I don’t eat much meat as it still sticks and hurts my throat , I eat more soft food ,no spicy food, and can’t drink alcohol , my husband says I’m a cheap date 😂 I hope her 100 days results come back ok .
I am still the same with my food now after 2years , but I don’t have good tastebuds , with having radiotherapy after having non Hodgkin lymphoma , 26 years ago , then having a bmt for leukaemia so I eat less than a child and only food I fancy which some days isn’t a lot and it’s forced , I’m more a pudding and custard and soft food diet now
Hello you wonderful lot. This string of messages has made me smile to read.
I haven't been home a year yet. Was 8 months post bmt in ghe clinic. I almost crawled up the stairs in tears when I arrived.
My diet is amazingly exactly the same as yours, really wierd, soup, ready brek, porridge ... and I even fantasised about a pot noodle recently. I put weetabix in a bowl with milk, 1 min microwave and then they're mushy enough, with a good dose of honey and a dash of cream, I can eat that. I don't have appetite, I just try to eat often cos I rarely manage more than two desert spoonfuls of anything. My aim is not to lose weight. Cheese and fruit has been good, prawns, 4 or 5 with lots to drink.
I hope it's not too frustrating Auds, I expect you want to prepare things for her and get her well with lots of good healthy food, but her needs will probably be very different.
Give her our warmest wishes and tell her she's on track from the sounds of things. It's been helpful for me to share this with you all here.
Very best of luck to you, Steve, Dave, Michelleanne , Auds, you're great.
Dave, I'm with you on Pot Noodles! They become almost a staple part of my diet during my recovery, along with thick soups, curries with rice, weetabix and porridge, rice pudding and other soft foods. I also got a taste for energy drinks, but thankfully that taste has waned and I don't drink them any more. Pork scratchings and midget gems were also favourites and still are.
My taste definitely changed as a result of the chemo and transplant, and I even went off chocolate bars which I normally love. Taste does recover though and eventually you should get it back and enjoy all the things you used to before treatment.
It's a case of finding stuff you like the taste of for the time being and keep going with those until you can tolerate other things. Eat as much as you can and whenever you can, even outside normal meal times. My view was that it wasn't too critical whether I was eating stuff that was good for me, just the fact that I was eating something to give me some sort of nourishment.
Hello again, I forgot to say I take multivitamin and minerals too. When I came out of the clinic I was suffering officially from malnutrition.. a lot said for the hospital food.
My mood picked up when I started on the vit+mineral fizzy tablet. Just the normal supermarket no name ones.
I also forgot to mention I have fresubin. I don't know if you have it in the uk. It's like astronaut drink, unfortunately really expensive, but high calorific with necessary supplements. The other supplement Ihave from the clinic, is a powder, which I put in fruit tea with juice , it is called EnergeaP.
The docs saw this as important when I first got back home, max one bottle a day. I am lactose intolerant so take lactase 2x a day for my medication which has plenty of lactose in it.
Hope it's all helpful Auds. Perhaps Steve, Dave and Michelleanne have other little things they take, I'd be interested.
Hi everyone . All your “food stories “ have made me smile in a nice way. They’ve reassured me that how my daughter is feeling regarding food is very normal after a transplant, or in her case ( and Michelle’s ) two. She’s eating a very small portion of what we are having for our evening meal and nibbling a little throughout the day.
Im glad that you are all managing to find foods that you can tolerate and think you’re all wonderful to be keeping positive and cheerful. I’m in awe of you all!
your daughter is very lucky to be eating a small portion of what you are eating. I can remember when I arrived home After my Bmt I was so fussy after my stomach was damaged so much by the chemo and the mucositus sounds like she is already making good patience. With time things will progress.
I'm impressed too that your daughter can eat a little of what you're eating. I was , and still am, very fussy.
At first I needed to eat about every two hours or I started noticing lack of energy. That made me very tearful in the beginning cos I wanted to prepare my own food, difficult with no energy.
I'm really pleased to hear how it's going. I'm also getting alot from this discussion ... accepting the situation. Thank you all.
im the same as you , also get a lot out of this forum , you all understand what I’m talking about , as we’ve all been there , where drs understand but not like all of us
Hey Everyone, just a quick update. My husband is +22 post second transplant and the doctors have seen him this morning and they have said they will be removing his line as it might be causing problems as they can’t find the source of infection. His neutrophils or white blood cells have dropped again so they said they will give him GCSF. I’m petrified that it’s not worked. I cannot remember what happened the first time as it was 2005. Is it normal for GCSF to be given or does it mean graft failure even though his counts were slowly rising.
my lines had to come out because they couldn’t find my infections , they put me on a drip for a few days , with antibiotics as they struggled to get some , that I wasn’t ellergic to
As Michelleanne said sometimes they remove your picc line or central line if your blood results show you have infection as sometimes the infection is in the line and it is near on impossible to remove it from the line. I had a few lies replaced for this problem so this is quite common. Also the GCSF injections are quite normal as these are to get your body to produce stem cells a bit quicker in your body in our case when you have had lots of chemo and your body is a bit slow in recovering the nuetrafil count to protect you from infection. Sometimes it can be done for a few days. When you have these injections normally in your belly you often get a strange sensation in your lower back or lumbar region as your pelvis region starts a rumbling sensation as is produces stem cells in quantity it is a bit like a back ache. I have also had this done a few times, it is also very similar to what they give to bone marrow donors these days to produce stem cells. The doctors just want to get rid of where the infection may be and encourage his neutrafils to come up. Ideally they want it to come up to about 7 before they allow him home.
Firstly, Beaglegirl, I hope that your husband is making a little progress . I have not gone through any of this but like you, have watched my daughter struggle through a second transplant and various infections .
one of the things that has kept me going is that Michelle said that the medical teams are fantastic and will keep working on anything that comes along ( like infections etc. )
My daughter is now home but the roller coaster journey goes on. Last night her stomach pains kept her awake and she’s exhausted and in pain today. She has spoken to her consultant who says that the enzyme part of her liver is causing problems , either due to to one if the drugs or gvhd. I do have faith that the doctors will work out how to help with this.
My daughter also had to have a picc line removed more than once because of infection.
It is a very emotional roller coaster for those going through all the aggressive treatment and their lives ones.
I know that I’ve said it before but this site is like having another family, a family who are so supportive and can hand out reassuring , helpful advice .
I hope everyone is as well as can be expected today. Helen, I think about you often as I think my daughter is going through similar symptoms to you.
Just hold on, it's such early days. It sounds you are the best compliment to her sct team. So challenging, no one else can imagine it. You and your daughter are a super team together.
Yes Michelleanne is right, and it also helped me from this app (this chat) to hear that I need to tell them everything too.
I know exactly how you all feel , we face different challenges everyday , I never thought it would be this hard , but at least I’m here , I try and not be so hard on my self , I do agree I find out more from this app , sharing people’s experiences
Thank you so much for your kind words, Helen and Michelle.
Today has been a very tough day for my daughter. Her stomach pains have not relented and everything ( not much ) is just passing through her. How I hope that it abates a bit tonight.
It is very hard for loved ones having to watch while their daughter, wife , husband etc suffers so much but I know that it is even harder for the person having to go through it. I so admire your strength, bravery and determination. Mostly however, I can’t thank you enough for encouraging myself and others while you have your daily battles .
I think about you all and am sending you all my best wishes and positive thoughts .
I had days like that , hopefully tomorrow will be a better day , my husband said that , he and family , couldn’t visit me because of covid it was months before I saw them 8 months before I saw our eldest daughter and her children,
if like me , I’m stubborn and it’s not going to beat me , I have a wonderful family to keep going for .
we’ll get through it together , now we have found this forum we will never be alone
Please remember what a fantastic job you are doing to help your daughter.
Maybe she'll do what I've done and block a lot of it out of my memory. I was in nappies for months with acute bowel gvhd, kept nothing in, no control. It is a haze now which is a relief.
Comments
Hello Auds,
I'm thinking of you. A very intense time. Sending positive, calm and kind energy.
Hi Auds, So pleased your daughter is out of hospital. I am following yours and others stories, as I visit my daughter regularly at her home in recovery. Keep updating on progress. It’s a rollercoaster and life changing. This forum helps so much x
Hi babs
hope your daughter is making steady progress, it is a very rough ride for everyone involved ,
it is a new way of life for me too , wish I’d found this forum early
best wishes
michelleanne
Hi everyone . Thank for your kind messages and I hope that your daughter, Babs, is doing well in her recovery . it certainly is a roller coaster journey!
My daughter is home with me until she is strong enough to cope with her wee boys . She’s delighted to be home but is very weak and underweight. I think that she is disappointed that she can’t do more but I’m trying to reassure her that she’s been in hospital for 5 months , her body has been through the mill and it will take time to recover.
Her digestive / bowel problems ( prob gvhd) is causing a lot of discomfort although she’s very uncomplaining. Eating is a struggle and she is trying and I know this will also take time.
Helen, I have been thinking about you and really hope that the gvhd problems will ease off a bit soon.
I’ve learned so much from this forum and I honestly don’t know how I would have coped with everything without all your encouragement and support . I really hope that life will be kind to you all.
our next step is waiting for the result of the 100 day post transplant biopsy. A tense time but just trying to enjoy having my daughter here and focusing on getting her stronger .
lots of positive wishes to all of you and thanks for being here .
Audrey
Hi Audrey, as time goes by the gvhd symptoms will hopefully gradually lessen. Hopefully bit by bit her diet will improve as the mouth and throat also improve but it will be slow as the body has so much to repair after the chemotherapy and replacing the immune system with a complete new one. I left hospital losing weight and once home I gradually put weight on and if she is on a high dose steroid this will also add weight. When you first start to eat it may not be the most healthy of diets I remember the first things I could eat were pot noodles and pies and pasties. Unfortunately your tastes change after a Bmt and your favourite items before the transplant you may not like after. I am 18 months past Bmt and my appetite and tastes are still repairing very slowly. I used to love to eat food and now I eat because I have to and also smaller portions as I cannot eat a lot, however I feel in the background this is very slowly improving as lately have managed to include more healthy options into my diet. It just takes a lot of time and patience and she will get there.
Hi audrey
so pleased to hear you’re daughter is managing at home , I was exactly the same , take one day at a time , we are all at different stages . Don’t expect too much I found my eating habits have changed so much , I eat what I fancy , I lived on soup , ready brek and milky coffee
I still don’t eat a lot , I don’t eat much meat as it still sticks and hurts my throat , I eat more soft food ,no spicy food, and can’t drink alcohol , my husband says I’m a cheap date 😂 I hope her 100 days results come back ok .
always in my thoughts all of you
best wishes
michelleanne
Hi Dave
I am still the same with my food now after 2years , but I don’t have good tastebuds , with having radiotherapy after having non Hodgkin lymphoma , 26 years ago , then having a bmt for leukaemia so I eat less than a child and only food I fancy which some days isn’t a lot and it’s forced , I’m more a pudding and custard and soft food diet now
best wishes
michelleanne
Hello you wonderful lot. This string of messages has made me smile to read.
I haven't been home a year yet. Was 8 months post bmt in ghe clinic. I almost crawled up the stairs in tears when I arrived.
My diet is amazingly exactly the same as yours, really wierd, soup, ready brek, porridge ... and I even fantasised about a pot noodle recently. I put weetabix in a bowl with milk, 1 min microwave and then they're mushy enough, with a good dose of honey and a dash of cream, I can eat that. I don't have appetite, I just try to eat often cos I rarely manage more than two desert spoonfuls of anything. My aim is not to lose weight. Cheese and fruit has been good, prawns, 4 or 5 with lots to drink.
I hope it's not too frustrating Auds, I expect you want to prepare things for her and get her well with lots of good healthy food, but her needs will probably be very different.
Give her our warmest wishes and tell her she's on track from the sounds of things. It's been helpful for me to share this with you all here.
Very best of luck to you, Steve, Dave, Michelleanne , Auds, you're great.
Dave, I'm with you on Pot Noodles! They become almost a staple part of my diet during my recovery, along with thick soups, curries with rice, weetabix and porridge, rice pudding and other soft foods. I also got a taste for energy drinks, but thankfully that taste has waned and I don't drink them any more. Pork scratchings and midget gems were also favourites and still are.
My taste definitely changed as a result of the chemo and transplant, and I even went off chocolate bars which I normally love. Taste does recover though and eventually you should get it back and enjoy all the things you used to before treatment.
It's a case of finding stuff you like the taste of for the time being and keep going with those until you can tolerate other things. Eat as much as you can and whenever you can, even outside normal meal times. My view was that it wasn't too critical whether I was eating stuff that was good for me, just the fact that I was eating something to give me some sort of nourishment.
Steve
Hello again, I forgot to say I take multivitamin and minerals too. When I came out of the clinic I was suffering officially from malnutrition.. a lot said for the hospital food.
My mood picked up when I started on the vit+mineral fizzy tablet. Just the normal supermarket no name ones.
Check it with the team first though.
Best
Helen
Me again,
I also forgot to mention I have fresubin. I don't know if you have it in the uk. It's like astronaut drink, unfortunately really expensive, but high calorific with necessary supplements. The other supplement Ihave from the clinic, is a powder, which I put in fruit tea with juice , it is called EnergeaP.
The docs saw this as important when I first got back home, max one bottle a day. I am lactose intolerant so take lactase 2x a day for my medication which has plenty of lactose in it.
Hope it's all helpful Auds. Perhaps Steve, Dave and Michelleanne have other little things they take, I'd be interested.
Best
Helen
Hi Helen
I was given supplement drinks when I first came home special food because I had a feeding pipe in ,
anything is better than nothing I suppose
michelleanne
Hi everyone
I eat the weirdest of food , I’m off instant coffee , meat , alcohol anything fizzy , I enjoy nice soft bread and butter
lovely to hear from you all
michelleanne
Hi Michelleanne
I like squadgy bread with butter too, with plenty to drink to help it down.
I couldn't eat bread for over a year so somehow I get a kick out of managing to eat it. It's like 'normal'.
Helen
Hi everyone . All your “food stories “ have made me smile in a nice way. They’ve reassured me that how my daughter is feeling regarding food is very normal after a transplant, or in her case ( and Michelle’s ) two. She’s eating a very small portion of what we are having for our evening meal and nibbling a little throughout the day.
Im glad that you are all managing to find foods that you can tolerate and think you’re all wonderful to be keeping positive and cheerful. I’m in awe of you all!
Audrey
Hi Audrey,
your daughter is very lucky to be eating a small portion of what you are eating. I can remember when I arrived home After my Bmt I was so fussy after my stomach was damaged so much by the chemo and the mucositus sounds like she is already making good patience. With time things will progress.
Hi audrey
your daughter sounds like she is making good progress , wish I could have managed that , it was very hard for me to eat , as I had a feeding tube in ,
i manage little better now , I’m a weird fussy eater no tastebuds , and a sore throat
I’m worse than the grandchildren , I’m always getting wrong for not cleaning my plate
love to you all
michelleanne
Hi Audrey
I'm impressed too that your daughter can eat a little of what you're eating. I was , and still am, very fussy.
At first I needed to eat about every two hours or I started noticing lack of energy. That made me very tearful in the beginning cos I wanted to prepare my own food, difficult with no energy.
I'm really pleased to hear how it's going. I'm also getting alot from this discussion ... accepting the situation. Thank you all.
Helen
Hi helen
im the same as you , also get a lot out of this forum , you all understand what I’m talking about , as we’ve all been there , where drs understand but not like all of us
you help me so much and I’m very grateful
love & best wishes
michelleanne
Hey Everyone, just a quick update. My husband is +22 post second transplant and the doctors have seen him this morning and they have said they will be removing his line as it might be causing problems as they can’t find the source of infection. His neutrophils or white blood cells have dropped again so they said they will give him GCSF. I’m petrified that it’s not worked. I cannot remember what happened the first time as it was 2005. Is it normal for GCSF to be given or does it mean graft failure even though his counts were slowly rising.
Hi beagle girl
my lines had to come out because they couldn’t find my infections , they put me on a drip for a few days , with antibiotics as they struggled to get some , that I wasn’t ellergic to
hope all goes ok after getting his lines out
best wishes
michelleanne
Hello Beaglegirl
I don't have experience of this specifically. Sending you energy and love. It's terribly hard for you both, big hug.
Helen
Hi Beaglegirl,
As Michelleanne said sometimes they remove your picc line or central line if your blood results show you have infection as sometimes the infection is in the line and it is near on impossible to remove it from the line. I had a few lies replaced for this problem so this is quite common. Also the GCSF injections are quite normal as these are to get your body to produce stem cells a bit quicker in your body in our case when you have had lots of chemo and your body is a bit slow in recovering the nuetrafil count to protect you from infection. Sometimes it can be done for a few days. When you have these injections normally in your belly you often get a strange sensation in your lower back or lumbar region as your pelvis region starts a rumbling sensation as is produces stem cells in quantity it is a bit like a back ache. I have also had this done a few times, it is also very similar to what they give to bone marrow donors these days to produce stem cells. The doctors just want to get rid of where the infection may be and encourage his neutrafils to come up. Ideally they want it to come up to about 7 before they allow him home.
Hi everyone
Firstly, Beaglegirl, I hope that your husband is making a little progress . I have not gone through any of this but like you, have watched my daughter struggle through a second transplant and various infections .
one of the things that has kept me going is that Michelle said that the medical teams are fantastic and will keep working on anything that comes along ( like infections etc. )
My daughter is now home but the roller coaster journey goes on. Last night her stomach pains kept her awake and she’s exhausted and in pain today. She has spoken to her consultant who says that the enzyme part of her liver is causing problems , either due to to one if the drugs or gvhd. I do have faith that the doctors will work out how to help with this.
My daughter also had to have a picc line removed more than once because of infection.
It is a very emotional roller coaster for those going through all the aggressive treatment and their lives ones.
I know that I’ve said it before but this site is like having another family, a family who are so supportive and can hand out reassuring , helpful advice .
I hope everyone is as well as can be expected today. Helen, I think about you often as I think my daughter is going through similar symptoms to you.
.
Hi Auds,
Just hold on, it's such early days. It sounds you are the best compliment to her sct team. So challenging, no one else can imagine it. You and your daughter are a super team together.
Yes Michelleanne is right, and it also helped me from this app (this chat) to hear that I need to tell them everything too.
Helen
Hi all
I know exactly how you all feel , we face different challenges everyday , I never thought it would be this hard , but at least I’m here , I try and not be so hard on my self , I do agree I find out more from this app , sharing people’s experiences
you are all in my thoughts
remember you never walk alone
michelleanne
Thank you so much for your kind words, Helen and Michelle.
Today has been a very tough day for my daughter. Her stomach pains have not relented and everything ( not much ) is just passing through her. How I hope that it abates a bit tonight.
It is very hard for loved ones having to watch while their daughter, wife , husband etc suffers so much but I know that it is even harder for the person having to go through it. I so admire your strength, bravery and determination. Mostly however, I can’t thank you enough for encouraging myself and others while you have your daily battles .
I think about you all and am sending you all my best wishes and positive thoughts .
Audrey
Hi audrey,
I had days like that , hopefully tomorrow will be a better day , my husband said that , he and family , couldn’t visit me because of covid it was months before I saw them 8 months before I saw our eldest daughter and her children,
if like me , I’m stubborn and it’s not going to beat me , I have a wonderful family to keep going for .
we’ll get through it together , now we have found this forum we will never be alone
best wishes
michelleanne
Hello Audrey,
Please remember what a fantastic job you are doing to help your daughter.
Maybe she'll do what I've done and block a lot of it out of my memory. I was in nappies for months with acute bowel gvhd, kept nothing in, no control. It is a haze now which is a relief.
Big hug to you and your daughter,
Helen
Thanks Michelle and Helen. I’m beside myself with worry this evening but your words of encouragement and sharing your experiences real help.