thanks for being there. I hope your daughter’s shingles is better Audrey. apparently it takes ages. Mine was a milder form, had it round my ear.
Today I got back from the clinic after overnight for my ECP treatment, leukapharese. Unfortunately spent the night in one of the rooms I was in for about 9 months whilst acute after the sct. My neighbour was beside herself which was difficult to cope with because she had lost her ability to speak coherently. I do so want to help and there’s such little we can do. I‘ll be ok, time heals.
my cough was thankfully not gvhd and another bit of very good news is my new scleral lenses are in and working which means Im not in acute pain which is absolutely game changing. My feet still make me semi mobile but I’m walking without my granny walker now.
I’ve been really frightened by Dave passing because he had high thrombocyte count and then apparently passed from an embolism, is that right Alison?. None of us can reserve a time slot to pass, so I’ll just keep going.
I plan to carry on checking in now and again. I’m thinking of you, Michelleanne, Audrey and you too Alison. Very proud of you all. We’re heroes!
your news is promising , pleased your cough isn’t gvhd
we can’t help everyone only listen everyone is so different with there recovery , doesn’t mean what Dave went through would happen to you please don’t think like that
The vertigo symptoms sound challenging Michelleanne, … it would be nice to know why.. I hope it’s not too bad and you can cope.
I’m being kind to myself at the moment which seems to help me be strong…
for example , I lay down on the sofa today and didn’t have my inner critic feeling bad about it, even had the telee on, I even dosed off to sleep which is an achievement for me in the daytime.
i don’t no what is causing it , I’ve had my flu& Covid vaccine so now I’ve got cold symptoms
having a day like that does you good , I sometimes have days like that ,just a afternoon with a nice coffee and a biscuit in front of a lovely warm fire
guess it won’t help , but mucosolvan… plenty of it.. and many months and months hoping and lots of drinking water helped my cough in the end… but I think you’ve had yours about a year already Michelleanne. I do hope it goes eventually. Is it productive or dry?
Ive found a good resource from Harvard medical school. I just subscribed free and I get emails with info. It’s not gvhd stuff but I’m trying to change my identity from disabled loser, which is how I feel to, disabled and goer. The lenses have helped, , made a big difference , I can see now , keep my eyes open, and don’t have acute eye pain which was awful and closed me off from the world, socially and physically.
Unfortunately my mobility is not yet recovered. I’m trying hard to walk more.
I‘ll just hit send, sorry to go on… you and Audrey have it harder than me.
sending my love to you both. I hope no news is good news Audrey, I think your gvhd time might be over. I certainly hope so.
i think the change in the weather makes my cough worse , you should never think of yourselves as a disabled loser , we have to learn to be more kind to our selves
we all go through hard times never gets any easier
sorry I haven’t managed to check in for a while but I’ve enjoyed catching up with your chat especially the positive things that you’ve been sharing.
Helen, it must be so wonderful for you to have the lenses and the experience the benefits of vision and no pain . I am so pleased for you and can understand that your emotional state will have got so much better now that you have your new lenses.
Michelle, you don’t have it easy, either and you do remarkably well to take so many medical issues in your stride. I’m glad that the cough isn’t any worse just now and I really hope that the vertigo backs off soon.
Helen, yourself and everyone who has gone through similar experiences to what you have gone through are certainly not disabled losers . As someone who has watched my daughter and her fight for survival, I would call you all superheroes ! You never give up and you are always there to help and support others . You definitely deserve rest and recovery days!
my husband has had major surgery where they removed part of his bowel so this has been / is a worrying time .
The driver of the car, who pled guilty , withdrew this plea at the last minute . It was like a punch in the gut. We now have the prospect of a full blown trial! Consequently my fibro has been flaring and each day is quite a struggle .
so we’re definitely the 3 amigos , putting forward one foot at a time every day.
my daughter is still doing well. The shingles is still there but easing off a bit and the licodaine patches have helped .
Thinking about you both and lovely to keep in touch. Xx❤️
I wrote the message at the bottom ages ago, but forgot to post.
so sorry to hear about hubby Audrey. I hope he’s picking up after the major surgery. It’s our age… we’re really noticing it here too. It feels like we’re getting old in speeded up time lapse.
My eyes are making a difference still, but it is treating the symptoms, the gvhd is still there and limiting me. Painful ankles, eyes aren’t perfect but still brilliant. Generally struggling as usual.
I talk to Dave sometimes, it helps.
I’m very sorry to hear about the driver Audrey. It’s terrible. I can’t imagine what it’s doing to you. Please know you and your family are loved and try to be kind and gentle to yourselves , in the face of endless torment easier said than done.
… heres the old message.
Thank you dear Michelleanne, that warmed my heart.
yes, let’s be kind to ourselves, agreed… promise:)
Hope you’re all doing okay as you can be. I just thought I would jump in and see how everyone was doing. I’m still not coping too well and going to the cemetery everyday. I miss him so much and just wish I never heard of the word leukamia. Keep strong and fighting Michelle, Helen & Audrey. Hope you have an okay xmas or as happy as you can be. I always think of you all x
I think that we’re all having struggles and probably the cold weather and dark nights doesn’t help our bodies or our mood . However, we’re all here, supporting each other and putting one foot in front of the other every day.
Alison, it’s so nice to hear from you. I don’t think the grief ever lifts , I think that we will gradually learn to live with it but life will never be the same . I also get solace from visiting the cemetery . It’s hard but I feel close to Paul when I’m there .
Helen, I hope that you are ok as we haven’t heard from you for a wee while .
Michelle, I’m glad that the dizziness has lifted a bit and it really is good to hear from you here .
keep strong everyone and keep nice and warm . ❤️❤️
That’s a bit weird , must be a feeling… I haven’t been around for ages and just by chance popped in… and here you are,
i hope you’re coping somehow Audrey, can’t imagine how, I’m sending a hug… and a hello to your daughter and the children… a hello from Germany:) so far away!
sad to hear you’re struggling Alison. Grieving is sooo exhausting. Go gentle with yourself, baby steps.
shame to hear you’ve been low too Michelleanne. Is there a particular problem? Or is it just everything 😘 I know that one too well.
I’m sending you all some energy to help keep going.
I too have been low, a bit of anxiety and loneliness. But I’m in a good place here writing this to you. Hubby’s ok.
im getting in a train tomorrow…can’t quite believe it, a 6 hour journey to see old English friends in north Germany, I’m just packing now, a nice distraction, and coming home Thursday. It’s a bit daunting…lots could go wrong but I’m feeling positive and looking forward to it. It feels a bit like life can start again (baby steps) but I’ll need to wear a mask and can’t take risks. It’s my very first solo mission.
i sometimes talk to ‘our ‘ Dave… his passing really knocked me. But now I often talk to him and thank him .. he gave me so much, just when I needed it. he does often feel ‘with me’.
he so lit up when you arrived Alison, you shared the wonderful horsey topic. It was a joy to feel your shared passion about them.
Talking of passions, I ve been asked to join a study they’re doing at my clinic…they want to develop some support resources for gvhders. I feel quite honoured… I will definitely mention you lot here and Anthony Nolan. Although Facebook has been helpful, our little group here has offered me more strength and trust right when I needed it than any other online site. It has always felt such a safe, cosy place to be. .., together.
im also getting into a topic which I love researching for my work… if I ever can start again… teaching illiterate adults to read and write. I have experience and have developed a method which works really well. I might present it online sometime next year.. I’ll try to remember to let you know if I really do it. I’m not at all the courageous type.
I think being so close to death for so long has made me think I want to try to let go and there’s nothing to lose… probably a bit like Anthony Nolan’s mum when she set up this site.
i am more mobile now, skin on ankles and feet is still dreadful but I have a new unorthodox technique with plastic breathable plasters. The real game changer has been the Scleral lenses… I can’t believe how long I had acute eye pain, tortuous. But I can engage with my world now rather than just coping with terrible pain.
I’m going on and on… I do wish there was a voice message or something, best would be a cuppa of course. You’re very welcome, it’s just a bit far🤭
my love to you all, you lovely lot, I wish I could make things easier for you all.
Helen
I ll probably check in again soon and then take another break.
I was in an interview today in my clinic. A student is writing a thesis on the needs of gvhd patients and recorded the interview one and a half hours, quite intense. It was quite emotional. Of course I had to mention our Dave and Anthony Nolan and our group.
you’ve done so well , and you sound so positive that’s great ❤️ I’ve decided to become a leukaemia care buddy , to chat with people like us it’s my way of giving something back I’m laid in bed with a bad chest in a month
you’ll be a great buddy, it’ll make so much difference to someone like us. Is it organised by Anthony Nolan?
please keep us updated on how it goes, … ie if it’s doable. I think I’d be frightened of getting too deep into negative dark space. My ECP trips overnight sometimes really affect me for days. I really hope it works out for you. I get so much positivity from feeling that I can help others.
Comments
It’s already October… wow!
thanks for being there. I hope your daughter’s shingles is better Audrey. apparently it takes ages. Mine was a milder form, had it round my ear.
Today I got back from the clinic after overnight for my ECP treatment, leukapharese. Unfortunately spent the night in one of the rooms I was in for about 9 months whilst acute after the sct. My neighbour was beside herself which was difficult to cope with because she had lost her ability to speak coherently. I do so want to help and there’s such little we can do. I‘ll be ok, time heals.
my cough was thankfully not gvhd and another bit of very good news is my new scleral lenses are in and working which means Im not in acute pain which is absolutely game changing. My feet still make me semi mobile but I’m walking without my granny walker now.
I’ve been really frightened by Dave passing because he had high thrombocyte count and then apparently passed from an embolism, is that right Alison?. None of us can reserve a time slot to pass, so I’ll just keep going.
I plan to carry on checking in now and again. I’m thinking of you, Michelleanne, Audrey and you too Alison. Very proud of you all. We’re heroes!
Thank you 🥰
much love
Helen
Hi helen
your news is promising , pleased your cough isn’t gvhd
we can’t help everyone only listen everyone is so different with there recovery , doesn’t mean what Dave went through would happen to you please don’t think like that
stay strong take each day one at a time ❤️
Thank you Michelleanne, it counts hearing it from you because you know what you’re talking about. And how it is to be frightened.
but I will ask them if it’s a risk and if there’s any treatment of any kind. In the past they’ve just said no.
love and thank you for being there. Even if we don’t check in so often.
how are you?
Helen
Hi helen
lovely to hear from you
I would it might ease your mind a little , as long as you can cope with the answer if it’s no
I’m not to bad at the minute , having trouble with symptoms like vertigo don’t no where it has come from oh r it’s the cold weather
always here whenever you want to chat
stay strong and take care ❤️
Hello,
The vertigo symptoms sound challenging Michelleanne, … it would be nice to know why.. I hope it’s not too bad and you can cope.
I’m being kind to myself at the moment which seems to help me be strong…
for example , I lay down on the sofa today and didn’t have my inner critic feeling bad about it, even had the telee on, I even dosed off to sleep which is an achievement for me in the daytime.
H x x x
be kind to yourselves ❤️
Hi helen
i don’t no what is causing it , I’ve had my flu& Covid vaccine so now I’ve got cold symptoms
having a day like that does you good , I sometimes have days like that ,just a afternoon with a nice coffee and a biscuit in front of a lovely warm fire
the simple things give you the most pleasure 😂
enjoy your cosy days ****
guess it won’t help , but mucosolvan… plenty of it.. and many months and months hoping and lots of drinking water helped my cough in the end… but I think you’ve had yours about a year already Michelleanne. I do hope it goes eventually. Is it productive or dry?
Ive found a good resource from Harvard medical school. I just subscribed free and I get emails with info. It’s not gvhd stuff but I’m trying to change my identity from disabled loser, which is how I feel to, disabled and goer. The lenses have helped, , made a big difference , I can see now , keep my eyes open, and don’t have acute eye pain which was awful and closed me off from the world, socially and physically.
Unfortunately my mobility is not yet recovered. I’m trying hard to walk more.
I‘ll just hit send, sorry to go on… you and Audrey have it harder than me.
sending my love to you both. I hope no news is good news Audrey, I think your gvhd time might be over. I certainly hope so.
H x
Hi helen
i think the change in the weather makes my cough worse , you should never think of yourselves as a disabled loser , we have to learn to be more kind to our selves
we all go through hard times never gets any easier
stay strong ❤️
Hello Michelle and Helen
sorry I haven’t managed to check in for a while but I’ve enjoyed catching up with your chat especially the positive things that you’ve been sharing.
Helen, it must be so wonderful for you to have the lenses and the experience the benefits of vision and no pain . I am so pleased for you and can understand that your emotional state will have got so much better now that you have your new lenses.
Michelle, you don’t have it easy, either and you do remarkably well to take so many medical issues in your stride. I’m glad that the cough isn’t any worse just now and I really hope that the vertigo backs off soon.
Helen, yourself and everyone who has gone through similar experiences to what you have gone through are certainly not disabled losers . As someone who has watched my daughter and her fight for survival, I would call you all superheroes ! You never give up and you are always there to help and support others . You definitely deserve rest and recovery days!
my husband has had major surgery where they removed part of his bowel so this has been / is a worrying time .
The driver of the car, who pled guilty , withdrew this plea at the last minute . It was like a punch in the gut. We now have the prospect of a full blown trial! Consequently my fibro has been flaring and each day is quite a struggle .
so we’re definitely the 3 amigos , putting forward one foot at a time every day.
my daughter is still doing well. The shingles is still there but easing off a bit and the licodaine patches have helped .
Thinking about you both and lovely to keep in touch. Xx❤️
I wrote the message at the bottom ages ago, but forgot to post.
so sorry to hear about hubby Audrey. I hope he’s picking up after the major surgery. It’s our age… we’re really noticing it here too. It feels like we’re getting old in speeded up time lapse.
My eyes are making a difference still, but it is treating the symptoms, the gvhd is still there and limiting me. Painful ankles, eyes aren’t perfect but still brilliant. Generally struggling as usual.
I talk to Dave sometimes, it helps.
I’m very sorry to hear about the driver Audrey. It’s terrible. I can’t imagine what it’s doing to you. Please know you and your family are loved and try to be kind and gentle to yourselves , in the face of endless torment easier said than done.
… heres the old message.
Thank you dear Michelleanne, that warmed my heart.
yes, let’s be kind to ourselves, agreed… promise:)
love to you both, stay strong
love
Helen xx
Hi
sorry I haven’t been on here for a while , had a rough time over the last few weeks
i think we all struggle at different times and different ways
helen you sound more upbeat it’s lovely to hear
audrey it’s so horrible what this driver is putting your family through I struggle to wonder why people are so nasty
stay strong remember you’ll never walk alone
love & best wishes ❤️
Hi Everyone,
Hope you’re all doing okay as you can be. I just thought I would jump in and see how everyone was doing. I’m still not coping too well and going to the cemetery everyday. I miss him so much and just wish I never heard of the word leukamia. Keep strong and fighting Michelle, Helen & Audrey. Hope you have an okay xmas or as happy as you can be. I always think of you all x
Morning beagle girl
lovely to hear from you , I’m not to bad , just getting on with things
I think I would do the same , when you have lost a soul mate , it’s going to take time
please me kind to yourselves & stay strong always here if you want to chat
best wishes ❤️
Hi Everyone .
I think that we’re all having struggles and probably the cold weather and dark nights doesn’t help our bodies or our mood . However, we’re all here, supporting each other and putting one foot in front of the other every day.
Alison, it’s so nice to hear from you. I don’t think the grief ever lifts , I think that we will gradually learn to live with it but life will never be the same . I also get solace from visiting the cemetery . It’s hard but I feel close to Paul when I’m there .
Helen, I hope that you are ok as we haven’t heard from you for a wee while .
Michelle, I’m glad that the dizziness has lifted a bit and it really is good to hear from you here .
keep strong everyone and keep nice and warm . ❤️❤️
Hi all
i agree about the different struggles we all have them in different ways and cope differently
I don’t think you can ever get over the loss of a loved one like you two have lost, your life will never be the same
stay strong ❤️
That’s a bit weird , must be a feeling… I haven’t been around for ages and just by chance popped in… and here you are,
i hope you’re coping somehow Audrey, can’t imagine how, I’m sending a hug… and a hello to your daughter and the children… a hello from Germany:) so far away!
sad to hear you’re struggling Alison. Grieving is sooo exhausting. Go gentle with yourself, baby steps.
shame to hear you’ve been low too Michelleanne. Is there a particular problem? Or is it just everything 😘 I know that one too well.
I’m sending you all some energy to help keep going.
I too have been low, a bit of anxiety and loneliness. But I’m in a good place here writing this to you. Hubby’s ok.
im getting in a train tomorrow…can’t quite believe it, a 6 hour journey to see old English friends in north Germany, I’m just packing now, a nice distraction, and coming home Thursday. It’s a bit daunting…lots could go wrong but I’m feeling positive and looking forward to it. It feels a bit like life can start again (baby steps) but I’ll need to wear a mask and can’t take risks. It’s my very first solo mission.
i sometimes talk to ‘our ‘ Dave… his passing really knocked me. But now I often talk to him and thank him .. he gave me so much, just when I needed it. he does often feel ‘with me’.
he so lit up when you arrived Alison, you shared the wonderful horsey topic. It was a joy to feel your shared passion about them.
Talking of passions, I ve been asked to join a study they’re doing at my clinic…they want to develop some support resources for gvhders. I feel quite honoured… I will definitely mention you lot here and Anthony Nolan. Although Facebook has been helpful, our little group here has offered me more strength and trust right when I needed it than any other online site. It has always felt such a safe, cosy place to be. .., together.
im also getting into a topic which I love researching for my work… if I ever can start again… teaching illiterate adults to read and write. I have experience and have developed a method which works really well. I might present it online sometime next year.. I’ll try to remember to let you know if I really do it. I’m not at all the courageous type.
I think being so close to death for so long has made me think I want to try to let go and there’s nothing to lose… probably a bit like Anthony Nolan’s mum when she set up this site.
i am more mobile now, skin on ankles and feet is still dreadful but I have a new unorthodox technique with plastic breathable plasters. The real game changer has been the Scleral lenses… I can’t believe how long I had acute eye pain, tortuous. But I can engage with my world now rather than just coping with terrible pain.
I’m going on and on… I do wish there was a voice message or something, best would be a cuppa of course. You’re very welcome, it’s just a bit far🤭
my love to you all, you lovely lot, I wish I could make things easier for you all.
Helen
I ll probably check in again soon and then take another break.
night night ****
I was in an interview today in my clinic. A student is writing a thesis on the needs of gvhd patients and recorded the interview one and a half hours, quite intense. It was quite emotional. Of course I had to mention our Dave and Anthony Nolan and our group.
night night you three,
love
Helen
Hi Helen
you’ve done so well , and you sound so positive that’s great ❤️ I’ve decided to become a leukaemia care buddy , to chat with people like us it’s my way of giving something back I’m laid in bed with a bad chest in a month
I love the positivity take care ❤️
Oh Michelleanne, good on you!
you’ll be a great buddy, it’ll make so much difference to someone like us. Is it organised by Anthony Nolan?
please keep us updated on how it goes, … ie if it’s doable. I think I’d be frightened of getting too deep into negative dark space. My ECP trips overnight sometimes really affect me for days. I really hope it works out for you. I get so much positivity from feeling that I can help others.
love to all
Helen
Hi helen
hope all goes well ❤️