Hi everyone, I hope your all well. I’m sorry to keep posting but I know how supportive you all are. Please please can anyone reassure me. My husband was admitted on Wednesday as he’s been confused and hallucinating. It’s been going on for 3wks. They have said it could be encephalitis but now they have done another lumbar puncture bacuse they have protein and white cells in his central nervous fluid. I’m worried it could be an AML relapse in the nervous system. I’ve dread it’s rare so hoping it’s a brain infection. Please I just need some support as I’m absolutely heartbroken again 💔
So sorry to hear what you and your husband are going through. It is really horrific and nervous for the partners and families of patients, even more than the patients themselves sometimes.
It is so hard for any of us to understand exactly what you are going through or what is going on with your husband, but just be reassured that he is in the right place to get the best possible help and medical care. You have done everything you can by getting him into hospital and it sounds like they are working to identify what exactly is happening.
It is absolutely ok to not be ok in situations like this, but also try not to let something that hasn't happened or been confirmed yet consume you with worry. We are all here to support you virtually and if you want someone to talk to then try Anthony Nolan's Support line on 0303 303 3030 during weekdays or Macmillan's support line 0808 808 0000 anytime before 8pm.
I stayed nearly all night last night. Finally the registrar came in to say that it’s not a relapse in the spinal fluid 🙏 he is still really confuse and talking nonsense so more tests next week. Thankyou for all your support x
Thank you for reaching out for support and reassurance. It sounds like this is a really frightening time for you with what is happening to your husband at the moment.
Thank you to everyone who has offered their support too. What an amazing community this is.
Beaglegirl, if you would like to speak to me, Liam (the Patients and Families Manager). Then, like Dan has already suggested, please call 0303 303 0303 and select option 3 to be put through to the team. I'm here until at least 5pm today.
Hi Beaglegirl. I am so sorry that your husband is suffering and that you are going through such a worrying time. I totally get how powerless you are feeling but being by your husband’s side and supporting him the way that you are doing, will really be helping him emotionally.
We’re all here for you and please keep chatting to us . I know that when my daughter was dreadfully ill, all the amazing people in this group really kept me going.
Helen, I really hope that your skin begins to improve soon. It requires so much patience and strength and I know that these are qualities which you have in abundance.
Dave, I am thinking about you and hope that it won’t be long until you turn the corner and feel as if you are making progress.
we celebrated a year since my daughter had her second SCT. I know that you all know how ill she was and I can never thank you all enough for the support and compassion that you all showed me when I needed it so much.
At the moment my daughter is doing quite well physically. We never take anything for granted or totally relax but we must embrace and be thankful for the good days.
Michelle, your kindness and always being there for everyone else has helped us all so much.
You really are all a wonderfully strong, kind and supportive group of people . I really consider you all to be my friends and think about you all often, hoping that as the days / weeks go on that all of your health will continue to improve.
that is good news about your daughter , where’s that year gone
I hope that you helen , Dave are doing aswell as can be , thinking about you all always , it’s 3 years tomorrow since I had my bmt , I’m very grateful to you all , for your support and kindness I also think of you as friends
Congratulations, Michelle, on 3 years since your bmt . I know that the journey hasn’t been easy and life still has its ups and downs but you are doing so well and are such a support to all of us .
Helen and Dave - I think that you are both probably still struggling just now but keep fighting because I have seen first hand how cruel this disease is but how it can turn the corner , however ill you might be at the moment. I really can’t believe how well my daughter is functioning considering that last year at this time we were told to prepare for the worst.
Anyway, I just want you all to know that I’m thinking about you and sending lots of hugs .
Thinking about you Michelle and hopE that they sort out your chest infections soon.
My daughter had so many chest infections while in hospital and when she got home . I really didn’t know how the medics were going to help clear it up, but it has eventually got much better . I think this illness requires you to have so much patience but your doctors will keep at it until they get your chest cleared up
Be kind to yourself and I’m always thinking about you and the others . Xx
Firstly Audrey so good to hear your daughter is doing so well after her second sct especially as things were not so good in the beginning she has come a long way. I am glad she is going from strength to strength.
Michelle so sorry you are getting these chest infections, I hope they clear up very soon.
Helen so sorry you are struggling so much, I hope your feet improve so soon so you can move on with life.
Yes I too have been struggling as I have not been making any progress. I just feel like I am stuck. My body used to fix all my issues eventually , but with gvhd my body is just fighting itself.
If only I could get mobile. Ankles +feet still the problem and getting worse.
Crossing fingers for your chest infections Michelleanne. So exhausting when you've got no energy anyway. I can't imagine that. I dread lung gvhd. Apparently it's the worst, but I thought eye was bad.
My head is in a better space. Not great but i was so low.
pleased to hear your head is in a better space , that’s a good start , hope they can sort out your legs and feet , my chest X-ray has come back clear so see where we go next love to you all ❤️
Its so good to hear from you all and thank you for the kind comments about my daughter .
Michelle - I had to smile when I read your text as my daughter says exactly the same - “ I just do what I’m told “ and I know that you all have faith in your doctors to do the best for you. I do hope that you are now feeling a bit better again.
Helen and Dave - I’m so glad to hear from you as I realised that you must both be struggling a lot. I think you are all amazing to get up and plough on each day , despite what you are going through . I really hope that things will take a turn around for you both soon and that your mobility starts to improve as they get in top of the gvhd and all the issues that go with it.
im struggling a bit with my fibro. The pain and fatigue is a constant challenge but when I think about all that you have all gone through and are going through, I can’t complain.
we can’t fully grieve my son as there is such a lot going on. The driver has been charged with death by dangerous driving and the court case will be next year. Always something to worry about. We have been invited to an award ceremony to receive an award for my son for donating his organs . It will be bitter sweet.
anyway, my daughters progress is at least giving me a bit if a lift although I can never totally relax with this illness as well you all know.
Well, all my friends, keep strong and know that this little group is behind each other on your long, difficult journey. Thinks Will get better .
you are going through tough times , just the same as us , I don’t know how you cope with what happened to your son , then your daughter , it was a great thing your son did to help other people ,he will live on in them
it’s shocking you have to wait so long for a court case
here for you all always , stay strong and stay safe
my chest isn’t getting any better even tho my chest X-ray is clear and on steroids see what happens next
Michelle, I’m thinking about you and really hope that your chest starts to improve soon. You do amazingly well to keep positive and cheerful when these setbacks come along.
my daughter has a cold at the moment and although she doesn’t complain , I worry that it goes into her chest.
look after yourself and always thinking about my wee group of friends here. Xx
Hope everyone is doing okay? Just a quick update on my husband they never found out wheat caused the encephalitis. He was discharged about 2wks ago now. He’s doing okay but now has skin GVHD so is starting ECP treatment next Thursday. His count are all up though so he’s Jung’s are going alright. We’ve booked a couple of days away to horse of the year show in October so something to look forward to. X
Comments
Hi everyone, I hope your all well. I’m sorry to keep posting but I know how supportive you all are. Please please can anyone reassure me. My husband was admitted on Wednesday as he’s been confused and hallucinating. It’s been going on for 3wks. They have said it could be encephalitis but now they have done another lumbar puncture bacuse they have protein and white cells in his central nervous fluid. I’m worried it could be an AML relapse in the nervous system. I’ve dread it’s rare so hoping it’s a brain infection. Please I just need some support as I’m absolutely heartbroken again 💔
Hi Beaglegirl,
So sorry to hear what you and your husband are going through. It is really horrific and nervous for the partners and families of patients, even more than the patients themselves sometimes.
It is so hard for any of us to understand exactly what you are going through or what is going on with your husband, but just be reassured that he is in the right place to get the best possible help and medical care. You have done everything you can by getting him into hospital and it sounds like they are working to identify what exactly is happening.
It is absolutely ok to not be ok in situations like this, but also try not to let something that hasn't happened or been confirmed yet consume you with worry. We are all here to support you virtually and if you want someone to talk to then try Anthony Nolan's Support line on 0303 303 3030 during weekdays or Macmillan's support line 0808 808 0000 anytime before 8pm.
Sending positive thoughts and prayers your way,
Dan
Hi beagle girl
I’m sorry to hear about your husband , I’ve never experience this I hope they can help you , when will you find out any news
thinking of you ❤️
I stayed nearly all night last night. Finally the registrar came in to say that it’s not a relapse in the spinal fluid 🙏 he is still really confuse and talking nonsense so more tests next week. Thankyou for all your support x
Hi beagle girl
that’s a good sign , see what these tests find stay strong
❤️
Hi Beaglegirl
We're all with you both In this very scary time. Words aren't enough.
Dan's sound very sensible though.
Love
Helen
Hi Beaglegirl
Thank you for reaching out for support and reassurance. It sounds like this is a really frightening time for you with what is happening to your husband at the moment.
Thank you to everyone who has offered their support too. What an amazing community this is.
Beaglegirl, if you would like to speak to me, Liam (the Patients and Families Manager). Then, like Dan has already suggested, please call 0303 303 0303 and select option 3 to be put through to the team. I'm here until at least 5pm today.
Thinking of you and wishing you all the best
Liam
Hello Beaglegirl
Feel free to keep us posted. I'm thinking of you.
Love
Helen
Hi beagle girl
how are things going , hope you get some news soon
stay strong ❤️
Hello Beaglegirl
If you read this, know we're with you. You don't need to write, I'm sure you've got enough to do. We understand.
Big hug
Hi Beaglegirl. I am so sorry that your husband is suffering and that you are going through such a worrying time. I totally get how powerless you are feeling but being by your husband’s side and supporting him the way that you are doing, will really be helping him emotionally.
We’re all here for you and please keep chatting to us . I know that when my daughter was dreadfully ill, all the amazing people in this group really kept me going.
sending hugs.
Hello Beaglegirl, Audrey has put it so well. If it helps, feels right, please continue to write. If it doesn't then don't, we understand. We're here.
Dave, I hope you're doing ok. Often think of you. I'm seeing Dr tomorrow. Still hoping for skin improvement.
Love to all
Helen
HI all
always here for everyone ,when and if needed thinking of you all always
❤️
Hi everyone
i think about you all a lot.
Helen, I really hope that your skin begins to improve soon. It requires so much patience and strength and I know that these are qualities which you have in abundance.
Dave, I am thinking about you and hope that it won’t be long until you turn the corner and feel as if you are making progress.
we celebrated a year since my daughter had her second SCT. I know that you all know how ill she was and I can never thank you all enough for the support and compassion that you all showed me when I needed it so much.
At the moment my daughter is doing quite well physically. We never take anything for granted or totally relax but we must embrace and be thankful for the good days.
Michelle, your kindness and always being there for everyone else has helped us all so much.
You really are all a wonderfully strong, kind and supportive group of people . I really consider you all to be my friends and think about you all often, hoping that as the days / weeks go on that all of your health will continue to improve.
love Audrey
Hi audrey
that is good news about your daughter , where’s that year gone
I hope that you helen , Dave are doing aswell as can be , thinking about you all always , it’s 3 years tomorrow since I had my bmt , I’m very grateful to you all , for your support and kindness I also think of you as friends
stay safe , stay strong always here 💕
Hello everyone
just checking in to see how everyone is doing.
Congratulations, Michelle, on 3 years since your bmt . I know that the journey hasn’t been easy and life still has its ups and downs but you are doing so well and are such a support to all of us .
Helen and Dave - I think that you are both probably still struggling just now but keep fighting because I have seen first hand how cruel this disease is but how it can turn the corner , however ill you might be at the moment. I really can’t believe how well my daughter is functioning considering that last year at this time we were told to prepare for the worst.
Anyway, I just want you all to know that I’m thinking about you and sending lots of hugs .
Audrey ****
Hi audrey
its so good to hear about your daughter , it’s great news I’m so happy for you all
youre right about life’s journey being full of up and downs
helen & Dave hope you are feeling stronger
ive had 2 chest infections since February had antibiotics now steroids X-ray on Thursday hope they can get to the bottom of it
stay safe , and strong ❤️❤️
Thinking about you Michelle and hopE that they sort out your chest infections soon.
My daughter had so many chest infections while in hospital and when she got home . I really didn’t know how the medics were going to help clear it up, but it has eventually got much better . I think this illness requires you to have so much patience but your doctors will keep at it until they get your chest cleared up
Be kind to yourself and I’m always thinking about you and the others . Xx
Hi auds
i had constant infections in hospital , you do have to have a lot of patients , and a lot of faith in those people who look after you
I just do what I’m told to do or try
we’re so overjoyed to hear how well you and yours are doing , you have been through so much and are hopefully out the other side
Thankyou so much ❤️
Hello all, that's wonderful news about your daughter Auds. Relieved.
Michelleanne, I do hope they can deal with your lung problem medically. Thinking of you.
Yes,I'm still struggling, i expect dave is too. Patience is our bedrock. And trust.
Night night,
Love Helen
Hi all,
Firstly Audrey so good to hear your daughter is doing so well after her second sct especially as things were not so good in the beginning she has come a long way. I am glad she is going from strength to strength.
Michelle so sorry you are getting these chest infections, I hope they clear up very soon.
Helen so sorry you are struggling so much, I hope your feet improve so soon so you can move on with life.
Yes I too have been struggling as I have not been making any progress. I just feel like I am stuck. My body used to fix all my issues eventually , but with gvhd my body is just fighting itself.
love to you all
Dave
Hi Dave & all
sorry to hear you are struggling still , it must be so so hard , I hope you can get some help soon always here ❤️
Hello all,
I'm with you Dave. Me to, stagnating.
If only I could get mobile. Ankles +feet still the problem and getting worse.
Crossing fingers for your chest infections Michelleanne. So exhausting when you've got no energy anyway. I can't imagine that. I dread lung gvhd. Apparently it's the worst, but I thought eye was bad.
My head is in a better space. Not great but i was so low.
How's hubby Beaglegirl?
Night night all,
Love
Helen
Hi Helen
pleased to hear your head is in a better space , that’s a good start , hope they can sort out your legs and feet , my chest X-ray has come back clear so see where we go next love to you all ❤️
Hi Everyone
Its so good to hear from you all and thank you for the kind comments about my daughter .
Michelle - I had to smile when I read your text as my daughter says exactly the same - “ I just do what I’m told “ and I know that you all have faith in your doctors to do the best for you. I do hope that you are now feeling a bit better again.
Helen and Dave - I’m so glad to hear from you as I realised that you must both be struggling a lot. I think you are all amazing to get up and plough on each day , despite what you are going through . I really hope that things will take a turn around for you both soon and that your mobility starts to improve as they get in top of the gvhd and all the issues that go with it.
im struggling a bit with my fibro. The pain and fatigue is a constant challenge but when I think about all that you have all gone through and are going through, I can’t complain.
we can’t fully grieve my son as there is such a lot going on. The driver has been charged with death by dangerous driving and the court case will be next year. Always something to worry about. We have been invited to an award ceremony to receive an award for my son for donating his organs . It will be bitter sweet.
anyway, my daughters progress is at least giving me a bit if a lift although I can never totally relax with this illness as well you all know.
Well, all my friends, keep strong and know that this little group is behind each other on your long, difficult journey. Thinks Will get better .
Sending hugs 🤗 .
Hi audrey
you are going through tough times , just the same as us , I don’t know how you cope with what happened to your son , then your daughter , it was a great thing your son did to help other people ,he will live on in them
it’s shocking you have to wait so long for a court case
here for you all always , stay strong and stay safe
my chest isn’t getting any better even tho my chest X-ray is clear and on steroids see what happens next
❤️
Michelle, I’m thinking about you and really hope that your chest starts to improve soon. You do amazingly well to keep positive and cheerful when these setbacks come along.
my daughter has a cold at the moment and although she doesn’t complain , I worry that it goes into her chest.
look after yourself and always thinking about my wee group of friends here. Xx
Hi audrey
i hope they can sort it out , see what they have to say on my next app
i do hope it doesn’t go on her chest , get it checked straight away if theres signs
you look after yourself it’s lovely to hear from you and how your daughter is ❤️
Hi Everyone,
Hope everyone is doing okay? Just a quick update on my husband they never found out wheat caused the encephalitis. He was discharged about 2wks ago now. He’s doing okay but now has skin GVHD so is starting ECP treatment next Thursday. His count are all up though so he’s Jung’s are going alright. We’ve booked a couple of days away to horse of the year show in October so something to look forward to. X