Hi Everyone, I hope everyone is doing well? I’ve been thinking of you all. Sorry I haven’t been on for a while as we have had an awful lot going on. My husbands skin GVHD has flared up and he has been having ECP treatment. Due to issues with the nurse they have been struck off due to some alarming issues he has not received a full treatment as yet. His skin is still very red and sore and he’s still in 50mg Pred daily too. Since then I’ve been diagnosed with glaucoma and I’m petrified I’m going to go blind and not be able to care for him. I’m just too young to be blind it’s just not fair. However, today was just the worst. We went to clinic and his bloods are okay ish but his neutrophils have gone down nothing else just his neutrophils. I’m just wondering is this the dreaded back of is it due to the GVHD. They have offered a bmb as I completely lost it when we spoke to the doctor and I think I made out that it was a problem and now my husband is scared and thinks it’s back. I feel really awful as I couldn’t help thinking the worst and now I’ve even made the doctor book a bmb. Can anyone give me any advice as I’m beginning to fall apart again 🥲
You are in a state of 'alert' for hubby and so you're probably getting panicy because of all your hormones running around trying to protect you and help you. Adrenalin and cortisol are clearly not helpful right now.
It's just an idea ...
Maybe it would help to chat with a trusted friend about strategies to help you steer the waves, storm. .. what's going on for you, you can't change, but a different angle on it, my therapist is good at helping me see what I'm doing and to understand it. Understanding I find helpful.
You're completely normal in your reactions, be kind to yourself, we can all understand you. Fear is blinding.
Thank you so much for reaching out on the forum. I am so sorry to hear of what is going on for you and your husband at the moment. If you would like to speak to someone at Anthony Nolan, please call 0303 303 0303 and choose option 3. You can ask to speak to me, Liam.
Hi Everyone, I’m coming on here for some support as I’m really struggling today. Please please help me. My husbands neutrophils have gone from 0.6 to 0.2 and white cells from1.2 to 0.9. He is just over 12mths post transplant and has had a bone marrow aspirate this afternoon. I’m really losing all positivity as he says his AML is back and he’s going to die before Xmas. Please tell me it’s going to be okay. My heart feels like it’s been ripped out of my chest 💔 I’ve spoken to Rachel at Anthony Nolan and now I’m home im having huge panic attacks and struggling to keep it together as we might get some results tomorrow. I’m so sorry for the awful post but I have no one else x
No need to feel sorry for posting. Thank you for reaching out, please remember me and Rachel are available at Anthony Nolan, and you can call us again. We're here for you.
We're sending you loving, compassionate energy to help you through this. Please try to feel it coming to you, maybe not in the panic attack moments, cos I think we're all on autopilot then, but when you come down, we're giving you a big hug. I do hope the results showed some hope or at least stability.
As Michelleanne said, sadly no magic wands, no flying carpets either or I could call by one afternoon and sit with you quietly. We are with you in spirit, you are with us, very much.
we got our Xmas present yesterday early. The results came back as the consultant rushed them through and bless her rang on the way home from hospital. He is leukaemia free!!!! We cannot believe it but can now have the best Xmas ever. I even was treated to a raki treatment as his CNS nurse thought I needed some time for myself. Thankyou everyone on here that offers me support I really do appreciate. I hope you all stay safe and well and have a fabulous Xmas and new year. Dreams really do come true xx
My intense outpatient treatment, every 2nd day for 4 weeks, seems to be holding. It's already deteriorated a bit but I can walk much better. It's wonderful.
They didn't offer me the light therapy but the skin has become much thinner with the strong cortisone cream and cold fatty compresses, that I'm glad I didn't have it. I can do stairs upwards one at a time, and if I'm 'warmed up' , without holding on!
We are thinking of you Beaglegirl. I don't know what I can say to help. I hope you've been able to get in touch with Liam from Anthony Nolan.
How's your daughter Audrey? How's she eating? Are you living together still? Do you feel you can help her? I hope so.
How are you Michelleanne? Haven't heard from you for a while. I hope it's a good sign. You had some tests going on... or am I getting muddled?
I was shocked to see your calf Dave, shocked how bad it is and how we've got the same thing.
You can get it sorted. Get a referal to a dermatology centre. I have total faith that it can get better... not normal, but much better. Jakavi won't make that much difference to your skin. It certainly didn't help me. I wish I could show you what they did. Maybe it's time for me to do that you tube video. ....
I wish we could share links here, but I guess it's probably better this way.
Hi Helen , kettles on and biscuits are ready 😂 that’s so good news about your treatment I’m so pleased for you
I’m ok I’m on a small dose of antibiotics and a new steroid mouth wash tablets that I put in water it seems to be working my chest is a lot better my gvhd in my mouth is more bearable
i hope you are all doing ok
I wish you all a very happy Christmas & a very peaceful , happy & healthier new year 🫶🏻
Thanks for the tea Michelleanne, just what I needed.
I'm glad the mouthwash is working for you and it's great to hear your coughs getting better, a relief I'm sure. I hope your other challenges don’t pull you down.
Mouth and eyes seem to come and go on an hourly basiss for me. I have cortisone tablets which dissolve quite quickly, Jorveza, and ciclosporin eyedrops and artificial tears.
It is so good to hear that your treatment is working, Helen and your mobility is improving . This will give you the lift that you very much needed.
Dave, I know that you are having a really rough time . I hope that hearing about Helen’s improvement will give you faith that it will happen to you as well. Just hang in there and remember, we’re all here for you.
I’m glad to hear that your chest is improving, Michelle, and that you are getting some relief in your mouth although I know that it has a way to go.
Things here have been better . For the past couple of months I’ve had a pretty horrible flare up of pain and fatigue. My daughter , who is living at home with her family is back in hospital. The wee boys are picking up everything from school and nursery and my daughter has had a terrible cold and cough. Her gp told her that it was viral bronchitis but of course she spiked a temp and is now back in hospital on an antibiotic drip. I know that this is the best place for her just now but I feel so sorry that she’s been taken away from her family again. You all have such a lot to contend with!
And yet you all have so much inner strength and resilience.
I'm hoping that you all stay as well as possible over Christmas and send lots of love .
so sorry to hear you’ve had a bad time , we all go through so very hard times you including you audrey
i hope your daughter gets home soon , that’s what was happening with my chest I’m on a permanent course of low antibiotics we have to tell our daughters not to come to us if the children have anything
we all have the amazing support with this site , I can say you are my online family 🥰
Lovely to hear from you and so reassuring. Yes I think you and my daughter have similar weakness in your chest . Her consultant said that it’s probably due to all the harsh treatment that was necessary to rid the cancer.
After a few x rays they’ve said that it’s a nasty cold virus and when her temp is stablised she should get home. It’s so difficult as she wants to be with her family and her wee boys need her but kids are little germ machines, especially just now. My daughter is also on lifelong antibiotics. Yes you do sound quite similar!
our little group are definitely my online family . Please look after yourself and have a lovely Christmas.
To all my other online “ family” my thoughts are with you and I’m sending all my positive wishes for all to have a happy Christmas . Xx
we do sound as if we have the same problems , they have said the same to me , my professor said I have to remember what I went through and that they would help in anyway they can
I hope they sort out her temperature and gets home to her family
have a wonderful Christmas , and a better new year❤️
Thanks for being there, thanks for being the only people around who have a deeper sense of understanding than most.... actually, more than anyone else. You've been more helpful to me than you can know.
I want to take this opportunity to wish you all, Dave, Michelleanne, Audrey, and if you get to read this Beaglegirl, you too, ... a peaceful Christmas with a bit of trust, love and joy. Let's look into the new year with a bit of confidence, ... it's terrible, we're in it, can't change it, but we've got each other, we're alive, we're heroes making a very good job out of a miserable situation.... now that's what I call magic power!
helen I totally agree with everything you have said
we are all survivors ,we have to be grateful on even bad days
I’ve felt normal in the last few days , being to our grandsons first nativity at school and our eldest granddaughters play so emotional, now I need a few quiet days
im so grateful for the chats we have and the tea & biscuits 😂
I wish you all health , peace and happiness always
Hello Evwryone . Thank you all for being such a support to me. I’m not suffering the illness but you’ve all helped me so much especially when my daughter was at her worst. Not only that but I’ve made a group of lovely close friends
I wish you all a very happy Christmas and hope that 2024 brings better health to everyone .
Love to you all on the last day of this year. It's more than challenging to conceive of 'time frame' for us all ... at least for me. I seem to still be in a strange "bubble". But here's sending us all kind compassion for our 2024, hoping that we can ride the waves with a bit more inner trust, self belief... that'd be nice.
I heard a lovely quote recently... if you believed in father Christmas for 8 years, then why can't you believe in yourself for 5 minutes .... . Somehow it spoke to me:)
Of course we need more than 5 minutes, but when it comes to those horrible crunch moments, I wish us all self trust and love.
Thanks for being there Audrey, Dave, Michelleanne, ...
and if you see this Beaglegirl, you too.
Thanks for that last cuppa Michelleanne, it was just what I needed. I've got a bit of leftover chocolate and biscuits if anyone's interested. .. and sainsbury red label... brought to me here in Germany.
can I please gate crash the chocolate and biscuits party? 😂 sounds like fun!
Ive been thinking about everyone during the holiday period. We all need a bit of extra strength during this time but having each other certainly helps.
Dave , I do hope that you got some respite over Christmas and New Year.
Comments
Hi Everyone, I hope everyone is doing well? I’ve been thinking of you all. Sorry I haven’t been on for a while as we have had an awful lot going on. My husbands skin GVHD has flared up and he has been having ECP treatment. Due to issues with the nurse they have been struck off due to some alarming issues he has not received a full treatment as yet. His skin is still very red and sore and he’s still in 50mg Pred daily too. Since then I’ve been diagnosed with glaucoma and I’m petrified I’m going to go blind and not be able to care for him. I’m just too young to be blind it’s just not fair. However, today was just the worst. We went to clinic and his bloods are okay ish but his neutrophils have gone down nothing else just his neutrophils. I’m just wondering is this the dreaded back of is it due to the GVHD. They have offered a bmb as I completely lost it when we spoke to the doctor and I think I made out that it was a problem and now my husband is scared and thinks it’s back. I feel really awful as I couldn’t help thinking the worst and now I’ve even made the doctor book a bmb. Can anyone give me any advice as I’m beginning to fall apart again 🥲
Hi beaglegirl
I’m sorry to hear you are having a hard time give the drs time to sort things out , take one day at a time
what have they said about you is it treatable ? My blood is up and down I think it’s part of the course
thinking of you keep strong ❤️
Hello Beaglegirl
You are in a state of 'alert' for hubby and so you're probably getting panicy because of all your hormones running around trying to protect you and help you. Adrenalin and cortisol are clearly not helpful right now.
It's just an idea ...
Maybe it would help to chat with a trusted friend about strategies to help you steer the waves, storm. .. what's going on for you, you can't change, but a different angle on it, my therapist is good at helping me see what I'm doing and to understand it. Understanding I find helpful.
You're completely normal in your reactions, be kind to yourself, we can all understand you. Fear is blinding.
Much love Beaglegirl
And to our precious team,
Helen
Hi Beaglegirl.
Thank you so much for reaching out on the forum. I am so sorry to hear of what is going on for you and your husband at the moment. If you would like to speak to someone at Anthony Nolan, please call 0303 303 0303 and choose option 3. You can ask to speak to me, Liam.
Thinking of you
Liam
Thank you Liam, it's good to know you're there.
Helen
Hi Everyone, I’m coming on here for some support as I’m really struggling today. Please please help me. My husbands neutrophils have gone from 0.6 to 0.2 and white cells from1.2 to 0.9. He is just over 12mths post transplant and has had a bone marrow aspirate this afternoon. I’m really losing all positivity as he says his AML is back and he’s going to die before Xmas. Please tell me it’s going to be okay. My heart feels like it’s been ripped out of my chest 💔 I’ve spoken to Rachel at Anthony Nolan and now I’m home im having huge panic attacks and struggling to keep it together as we might get some results tomorrow. I’m so sorry for the awful post but I have no one else x
Hi beaglegirl
I’m so so sorry to hear you are feeling like this
what have the dr said if anything , I really hope you get good results tomorrow I wish I could wave a magic wand to make everything ok
i send you strength and lots of love ❤️always here and thinking of you both
keep strong let us know when you have the results 🫶🏻🤞
Hi Beaglegirl,
No need to feel sorry for posting. Thank you for reaching out, please remember me and Rachel are available at Anthony Nolan, and you can call us again. We're here for you.
Liam
Hello Beaglegirl
We're sending you loving, compassionate energy to help you through this. Please try to feel it coming to you, maybe not in the panic attack moments, cos I think we're all on autopilot then, but when you come down, we're giving you a big hug. I do hope the results showed some hope or at least stability.
As Michelleanne said, sadly no magic wands, no flying carpets either or I could call by one afternoon and sit with you quietly. We are with you in spirit, you are with us, very much.
Night night Beaglegirl,
Helen
Hi Helen, Michelle and everyone else,
we got our Xmas present yesterday early. The results came back as the consultant rushed them through and bless her rang on the way home from hospital. He is leukaemia free!!!! We cannot believe it but can now have the best Xmas ever. I even was treated to a raki treatment as his CNS nurse thought I needed some time for myself. Thankyou everyone on here that offers me support I really do appreciate. I hope you all stay safe and well and have a fabulous Xmas and new year. Dreams really do come true xx
Hi beaglegirl
that’s such wonderful news , I’m so happy for you both , we went through all these tough frightening times
it’s always a worry , when you start to feel unwell and you imagine things are going wrong
we are all survivors in one way or another
have the most fantastic Christmas enjoy every minute stay safe give your husband a big hug from me 🫶🏻
Wonderful news! Enjoy! I am:)
... yes Michelleanne, we've sadly all experienced the hopelessness.
I hope your eyes stay stable Beaglegirl.
Much love to all.
That is such wonderful news , Beagle girl. I can just feel your euphoria.
we’re always here for you and for each other.
sending love ❤️
Hello all,
My intense outpatient treatment, every 2nd day for 4 weeks, seems to be holding. It's already deteriorated a bit but I can walk much better. It's wonderful.
They didn't offer me the light therapy but the skin has become much thinner with the strong cortisone cream and cold fatty compresses, that I'm glad I didn't have it. I can do stairs upwards one at a time, and if I'm 'warmed up' , without holding on!
We are thinking of you Beaglegirl. I don't know what I can say to help. I hope you've been able to get in touch with Liam from Anthony Nolan.
How's your daughter Audrey? How's she eating? Are you living together still? Do you feel you can help her? I hope so.
How are you Michelleanne? Haven't heard from you for a while. I hope it's a good sign. You had some tests going on... or am I getting muddled?
I was shocked to see your calf Dave, shocked how bad it is and how we've got the same thing.
You can get it sorted. Get a referal to a dermatology centre. I have total faith that it can get better... not normal, but much better. Jakavi won't make that much difference to your skin. It certainly didn't help me. I wish I could show you what they did. Maybe it's time for me to do that you tube video. ....
I wish we could share links here, but I guess it's probably better this way.
Who's putting the kettle on? I'd love one.
Hi Helen , kettles on and biscuits are ready 😂 that’s so good news about your treatment I’m so pleased for you
I’m ok I’m on a small dose of antibiotics and a new steroid mouth wash tablets that I put in water it seems to be working my chest is a lot better my gvhd in my mouth is more bearable
i hope you are all doing ok
I wish you all a very happy Christmas & a very peaceful , happy & healthier new year 🫶🏻
Thanks for the tea Michelleanne, just what I needed.
I'm glad the mouthwash is working for you and it's great to hear your coughs getting better, a relief I'm sure. I hope your other challenges don’t pull you down.
Mouth and eyes seem to come and go on an hourly basiss for me. I have cortisone tablets which dissolve quite quickly, Jorveza, and ciclosporin eyedrops and artificial tears.
Anyway, I'll get off here. Night night all.
Helen
I enjoy our tea & biscuits
it does get me down some days but I just do what I feel like doing our daughter has being taken me out for a coffee which has been nice , but tiring
night night god bless
Hi Everyone
It is so good to hear that your treatment is working, Helen and your mobility is improving . This will give you the lift that you very much needed.
Dave, I know that you are having a really rough time . I hope that hearing about Helen’s improvement will give you faith that it will happen to you as well. Just hang in there and remember, we’re all here for you.
I’m glad to hear that your chest is improving, Michelle, and that you are getting some relief in your mouth although I know that it has a way to go.
Things here have been better . For the past couple of months I’ve had a pretty horrible flare up of pain and fatigue. My daughter , who is living at home with her family is back in hospital. The wee boys are picking up everything from school and nursery and my daughter has had a terrible cold and cough. Her gp told her that it was viral bronchitis but of course she spiked a temp and is now back in hospital on an antibiotic drip. I know that this is the best place for her just now but I feel so sorry that she’s been taken away from her family again. You all have such a lot to contend with!
And yet you all have so much inner strength and resilience.
I'm hoping that you all stay as well as possible over Christmas and send lots of love .
Audrey
Hi audrey
so sorry to hear you’ve had a bad time , we all go through so very hard times you including you audrey
i hope your daughter gets home soon , that’s what was happening with my chest I’m on a permanent course of low antibiotics we have to tell our daughters not to come to us if the children have anything
we all have the amazing support with this site , I can say you are my online family 🥰
Hi Michelle
Lovely to hear from you and so reassuring. Yes I think you and my daughter have similar weakness in your chest . Her consultant said that it’s probably due to all the harsh treatment that was necessary to rid the cancer.
After a few x rays they’ve said that it’s a nasty cold virus and when her temp is stablised she should get home. It’s so difficult as she wants to be with her family and her wee boys need her but kids are little germ machines, especially just now. My daughter is also on lifelong antibiotics. Yes you do sound quite similar!
our little group are definitely my online family . Please look after yourself and have a lovely Christmas.
To all my other online “ family” my thoughts are with you and I’m sending all my positive wishes for all to have a happy Christmas . Xx
Hi audrey
we do sound as if we have the same problems , they have said the same to me , my professor said I have to remember what I went through and that they would help in anyway they can
I hope they sort out her temperature and gets home to her family
have a wonderful Christmas , and a better new year❤️
Hello dear team,
Thanks for being there, thanks for being the only people around who have a deeper sense of understanding than most.... actually, more than anyone else. You've been more helpful to me than you can know.
I want to take this opportunity to wish you all, Dave, Michelleanne, Audrey, and if you get to read this Beaglegirl, you too, ... a peaceful Christmas with a bit of trust, love and joy. Let's look into the new year with a bit of confidence, ... it's terrible, we're in it, can't change it, but we've got each other, we're alive, we're heroes making a very good job out of a miserable situation.... now that's what I call magic power!
Love to you all,
Helen
Hi , my dear friends
helen I totally agree with everything you have said
we are all survivors ,we have to be grateful on even bad days
I’ve felt normal in the last few days , being to our grandsons first nativity at school and our eldest granddaughters play so emotional, now I need a few quiet days
im so grateful for the chats we have and the tea & biscuits 😂
I wish you all health , peace and happiness always
also to all at Anthony Nolan ❤️
Hello Evwryone . Thank you all for being such a support to me. I’m not suffering the illness but you’ve all helped me so much especially when my daughter was at her worst. Not only that but I’ve made a group of lovely close friends
I wish you all a very happy Christmas and hope that 2024 brings better health to everyone .
sending love
Audrey
hi audrey
i feel the same enjoy everyday ❤️
I'm touched, love to you all. Where would we be without this medium. Counting my blessings.
Love
Helen
Love to you all sending lots of hugs😘❤️
Love to you all on the last day of this year. It's more than challenging to conceive of 'time frame' for us all ... at least for me. I seem to still be in a strange "bubble". But here's sending us all kind compassion for our 2024, hoping that we can ride the waves with a bit more inner trust, self belief... that'd be nice.
I heard a lovely quote recently... if you believed in father Christmas for 8 years, then why can't you believe in yourself for 5 minutes .... . Somehow it spoke to me:)
Of course we need more than 5 minutes, but when it comes to those horrible crunch moments, I wish us all self trust and love.
Thanks for being there Audrey, Dave, Michelleanne, ...
and if you see this Beaglegirl, you too.
Thanks for that last cuppa Michelleanne, it was just what I needed. I've got a bit of leftover chocolate and biscuits if anyone's interested. .. and sainsbury red label... brought to me here in Germany.
Helen ****
Hi helen
i wish you all peace ,happiness & lots of love in 2024 , I’m so very proud of all of you what amazing friends you are ❤️
yes please I’m up for chocolate , biscuits and a cuppa , 👍🥰
Hi Helen and Michelle
can I please gate crash the chocolate and biscuits party? 😂 sounds like fun!
Ive been thinking about everyone during the holiday period. We all need a bit of extra strength during this time but having each other certainly helps.
Dave , I do hope that you got some respite over Christmas and New Year.
sending love to everyone. ****