lm so sorry that that you are struggling so much. I know that there’s nothing that any of us can do to take away your pain but I’m glad that you are reaching out as we all want to help you in any small way.
we’re here to listen and try to be with you through this painful journey. People kept telling me that I would begin to accept the loss of my son even though I would never stop missing and living him. It still seems such a mountain to climb and you are just at the beginning of the climb.
youre doing the right thing in reaching out to us and I hope that it helps just a tiny bit to know that we’re all here for you.
sending love ❤️ and all the strength that we can give .
Michelleanne, you poor thing... 10 days is a very long time. It will eventually pass. Patience maybe isn't the word... try just to be in the now and get through each day the best you can. Sounds like a nasty version. Hold on tight, it will pass. I agree with everything Audrey has said. You are so kind and supportive to us all here, so strong. Say all those things now to yourself... even out loud if you can. It's one of my meditations... Sounds balmy, but maybe it'll help... we'd say them to you if we could be with you.
Hi Beaglegirl, I'm still up for a little while if you want to write...
Audrey, I spoke too soon.... I was brought into the clinic in an ambulance with the emergency doctor yesterday very early. It's dawned on me that they're being very vigilant with your daughter. The fact she's in hospital so often shows how vulnerable she is and therefore they're being very careful with her.
I guess It's one of the major issues of being immunsuppressed.
I have a virus RSV, which is harmless for the majority, and gastroenteritis with a fever, ... the reason for me being admitted. Hopefully off home tomorrow. I was in really bad shape but with IV fluids, nacL , electrolytes etc, and sleeping round the clock, I'm doing loads better.
It was terribly frightening for my family. They're so helpless.
I've been struggling, I'm a bit worried this could be setting of some new gvhd, or making mine worse. I lost my positivity this afternoon.
Thought of you all. Alison, what a hero you are and what a hero Martin was, Audrey, you and your daughter, Michelleanne, your endless chest problems and gvhd, Dave, your endless stuggle with gvhd(... I read a bit with you on Facebook. I hope the massage helps a bit. )
My eyes are getting worse, mouth too, feet are not changing, not improving- I can bend my ankles forwards a bit now though. I guess I'm just still poorly, temperature.
This , our, whole thing, gvhd is sooooo horrible.
The young nurse said it's not superstition that positive people live longer, she sees it herself. She was very sweet to me. I'm sending the message to you.
sorry to hear you are struggling , we are all vulnerable , keep positive and strong with the help of your doctors you will get there , have faith in them aswell as yourselve
we all struggle , look at how far you have come take care ❤️
i am so sorry to hear what has been happening with you. It sounds so similar to my daughter. She was also admitted with the RSV virus . As you say, nothing much for the average person with a good immune system but so debilitating and frightening for those who have a weakened or no immune system. I can understand just how worried your family must have been as I go through this every time that this happens to my daughter .
its so easy for me to say but please try to focus on how far you’ve come . The gvhd is causing you such a lot of grief and sounds horrible. There’s no easy fix but I’m sure that your medical team will do everything to help ease your symptoms even though it must seem to be taking forever for you. The fact that you’ve been and are so unwell due to the virus will be making you feel even lower .
we’re all here with you and will try to lift your spirits a bit .
Dave, I know that you too have an endless struggle with your gvhd symptoms and I’m always thinking about you and hoping that with the help of your team, that something will be found that will help to ease the symptoms .
Michelle, our strong, brave friend who constantly supports us all and is so uncomplaining. I know that you too are having a very hard time . I hope that your visit to the clinic was beneficial and has put your mind at rest a little .
We really do seem to be in this place together. My goodness, it's so helpful for me.
Thank you Audrey for telling me about your daughter's admittance to the clinic for the RSV. It seems to relativise it a bit. Par for the course so to speak. I can't imagine what you're going through with it Audrey. And then your grandchildren on top. It must be like juggling on hot coals.
I find it difficult to know how we're coping. But we are. Somehow. We're here.
I'm back home. Even went outside to stretch my legs for a minute. That did me good. Shuffling along.
Michelleanne, do let us know how it's going if you feel up to it.
Hello Everyone. I hope that this week has been a little better for you all.
Helen, I hope that you’ve been keeping positive and recovering from being in hospital. My daughter had just had a week in hospital . It seems a repeated pattern of bad cough, high temp etc. Her lungs have been damaged with all the treatment and they’re doing another ct scan to compare with the last one Hopefully no more deterioration. Another biopsy on Monday so a bit of a worrying time .
I think this time of year is challenging for you all. The weather and all the bugs that it brings doesn’t help physically and the long dark days certainly doesn’t help mentally.
Helen and Dave, I know that you both struggle so much physically because of the gvhd and consequently it must pull you down.
please remember that we’re all here for each other and we all care.
Hello all, hello Audrey, Michelleanne, Dave, Alison if you're around ... hope so,
So sorry to hear that about your daughter Audrey, She's in the best place, but such a shame. I hope they can get her temperature down. Is it viral or bacterial, the cough? A cough is so exhausting too. Say hello to her from me ... even though... :)
Maybe she's home already.
Unfortunately they were not to be persuaded with my ecp. My next appointment is 18.march. I'm struggling a bit. Feeling low and lacking any sense that I'm in any way in control. All a bit arbitrary.
My eyes are bad again so I can't talk much, distracted with the pain. They want to fit me with contact lenses if it gets bad again. It's a 4, 5 hour wait in the eye clinic which is awful when I have pain. Dreading it. Don't even know if the lenses will be good. Last time they hurt then fell out.
Oh dear ... I've had enough. It's late and I'm tired, hopefully better tomorrow.
Much love to you all,
Helen
I'd been deregistered without realising it. Glad I'm back in.
good to hear from you and know you are ok. Although we understand you are still suffering the loss of Martin and will do for a long time to come. Sometimes laying blame somewhere helps us overcome the kiss or account for it as such a loss is so hard to get over. However by continually looking for blame and not accepting what has happened and you cannot bring back Martin is not helping you and tearing you apart. I think you really need to get some serious councilling to help you through this. The hospital will have done all they can to help Martin live and overcome his illness, they have nothing to gain by going down the wrong road. There job is to save lives. If you really want to Perdue this route of blame it it best you employ a lawyer specialist in medical negligence but I think it will cost you a lot, and I am sure Martin would not want you to go down this road he would want you to make the best of what t you have and not waste your time of looking for something that isn’t there. My mother has suddenly come on with severe Alzheimer’s and not got long I have just learnt, I can’t blame the medical profession for not knowing sooner so I can spend more time with her. Unfortunately life is what it is however long or short it is and we just have to make the most of it while we can. I really feel for you and your loss of the love of your life and wish I could do more for you. We are all here for you to try to help you accept the loss and to realise Martin will never be coming back and that you need to make the best of the time you have. We all go the same way in the end.
Your and Martin's loss is so painful and unjust. You're understandably in a very dark place. Nothing I say could help.
I too am at the mercy of doctors who will make mistakes because they are human. Unfortunately and also fortunately for me I'm at a university hospital which trains young haematology oncologists... my latest doctor leads me to desperation ... obviously early on in his specialised training .... but we need doctors... they are human, they will make mistakes... but essentially they have our interests at heart... they give an oath to that to be able to practice. But it's not helpful if they're inexperienced and not part of a good team.
I think money might also play a role ... I'm not privately insured so they may be trying to save money by reducing my treatment. Dave, for example has a poor quality of life because the government won't pay for a necessary drug. It's cruel, but it's the real world.
I did sadly have dark thoughts recently ... they'd save money if they lost me. That might play a factor in their decision-making too. Such things happen in the real world. Maybe they'll decide to give up on me. It will no longer be in my hands. They decided to give me the stem cell transplant although I was recently told by my doctor that I was so far gone, I was not expected to live and they took a risk with me. I think he was looking for gratitude and recognition from me.
You and Martin fought so long and hard. Letting go is now even harder.
I don't know what to say ... I certainly can't say anything helpful because there isn't any way to help. I guess time and love are all that can help. When my time's up, it'll hopefully go quick and it won't be in my or hubby's hands.... when, how. I hope it'll be in the hands of a well experienced trustworthy doctor, but I think that's for the Story book and not real life. We're totally vulnerable.
Dear Alison, I'm sure my words are not helpful, but it's just my thoughts shared for you.
I have a request, could you give me a bit of feedback? I'd like a bit of dialogue with you if you feel you can manage. You are such a treasure and it'd be nice to feel a bit closer.
please realise we are always here for you. I wanted to be totally honest with you and want you to come out of this a stronger person. I want what is best for you and at the moment you are really struggling and probably very lonely and your mind is going all over the place looking too deeply into things and finding things that are never there. My ex wife was the same she was in constant depression since being a child, never really worked, found nothing interesting in life to do so was always imagining things that were not there. I am also now like this, now I am off work with gvhd all I do is really either sleep or sit and watch telly and my mind plays on me and I look for things that are not really there or looking for fault why I do not seem to be recovering. It is because I have too much spare time and not fulfilling my time with something more positive. Ie a pastime, working, spending time with friends. You need to look forward now and plan where you or going now or you can stay where you are now looking for continual blame and making your own life more of a mess and also more unhappy. Which would Martin want for you? What do you want for you really? Continually thinking of you.
Thanks Dave, for your honesty, you give me strength.
That's more or less where I am now. I do nothing, can do nothing, neglecting any contacts that are still hanging on, which is getting fewer and fewer. ... I'm getting better at Sudokus. They say to combat stress it's good to learn something... my learning was Sudokus. I'm not strong enough to meet people though, can't go to choir or gymnastics cos I'm suffering. I long to get the ecp back. I was doing so well.
This is a horrible place to be. I had a real downer a few days ago, cried a lot. It feels more numb now, which is good. Numb is the only way to be in this. Acute feelings are just tooo much ... poor you Alison... a big long hug from us all... terrible.
Love to you all and thanks again Dave. You might be right about the spare time, but what are we supposed to do when we don't have the energy for anything else. Acceptance and compassion. It's wearing thin. X
I too am finding it very hard. Been playing sudoku for a long time while I am like this. Yesterday I felt maybe I was able to stand up for a little longer and my range of motion was very very slightly better, today things seem worse and the skin on my legs seems tighter. Seems always to be one step forward and then 4 back. It is sorry for the pun living ****. I want so badly to improve even at a slow rate. I know it is possible as I see others stories where they seem to improve, I want a purpose in life. We all struggle so much with this horrible disease although all our suffering seems to be for quite different things.
I am hoping for us all we will soon have better things to come soon.
As I said to Michelleanne, I prefer to keep my focus here with our little trusting group at Anthony Nolan. I'm maybe not so good at spreading myself about. This group is very special to me and I hope it stays like that for a while longer. I'm sure it'll change at some point, but you're all very valuable to me.
You're a darling WITH your posts Alison, all of them ... meltdown or not. If you apologise I feel like there's some sort of reason for you to apologise, as if we might need an apology, but there's absolutely no reason for you to apologise. We share, love and trust here exactly because it's safe for any one of us to have a meltdown. Maybe I'll be me next, and you'll be there for me.
I don't know where I'd be without this safe, compassionate place. I really hope that you can let yourself share with us without any negative feelings from your 'old film' as I call mine. Thank goodness when I was in the clinic for the 9 months, a very good therapist said to me that she felt I had people around me who loved me, but I was living in my head in my 'old film', (a place of shame and negativity). It was the message that turned me around. I work at living in the now and remembering that those around me .. my family .. love me regardless of what's going on in my head, they want me to feel safe with them and share if it helps. We are those people for you at the moment Alison. Whatever is going on for you in your head , is not here and now. We love you just the way you are, whether you believe it or not. Now that feels good to write ... because I know it's true for me too.
It won't always be like this Alison. But for now it's ok. it could be worse .. difficult to imagine how, but it could be.
I hope I'm making sense.
I'm happy for you to DM me if you need to. I prefer to keep to the group. If anyone from outside wants to read our posts, they're welcome, it's all totally human and I think we're great, warts and all.
Better get off here,
Love to you all,
Helen
I'm just going to have to hit send again... be brave Helen:)
Hi everyone. It makes me very sad to read how you are all suffering in your own way and for different reasons.
Dave and Helen , I can only imagine just how difficult and downheartening your illness is but Dave you are right- your medics are doing everything possible to help you and when they lose a patient it is very hard for them. Not the same loss as a loved one but still a loss. Anyway, I think that Helen and you are stronger than you both give yourself credit for. You both are suffering dreadful symptoms and yet you get up everyday, do sudokos and try to help others who desperately need compassion and support .
Alison, you are in the first stages of grief and your thoughts are everywhere. No one can tell you how to think or not think but you will work it out. My son was mown down by a speeding driver. I have quiet meltdowns but try to put on a brave face to those around me. This is hard work but it’s my way of getting though each day. Not right, not wrong .i don’t want to become bitter and hate the driver as I know that’s not what my son would want. But that’s just my way. I really hope that although you have got a lot of grief to wade through and it will never go away, that eventually you will find some way to accept what has happened .
And so all my friends, we all have our own battles to fight but we all have each other and care for each other .
so sorry to hear of your struggles , I haven’t been on this group , as I didn’t feel I could help you in anyway , with my words
im struggling more mentally at the moment
I have the best treatment and the most wonderful consultants and professors , I never google or question their treatments as I feel they know more than me , it’s their field , they are there to help and treat and keep us alive , I’m so grateful for that as I wouldn’t be alive without them , now I feel it’s my turn to try and do my best to be the best I can be
hope things get sorted for you all please have faith and stay strong ❤️
Lovely words that I think we all have to remember especially in the even more difficult times .
you have been such a strength to all of us in this group . Please remember that we are all here for you too . I’ve seen via my daughter how mentally stretching this illness is for you all and also for the relatives
We’re a team here so no one is on their own with their battles
I agree Michelleanne, it's our turn to be our best... they gave us the gift of life with the stem cell transplant.
Interestingly, last night , hubby met a close friend who also had a sct in the same clinic as me, .. two actually, the first didn't work. He, Christoph, has no gvhd but lives in fear that the leukaemia will return because he has no chances left. But the reason I mention him, .. Christoph told my hubby that my problem with them not continuing the ecp treatment etc. Is par for the course, normal.. because they have an ever increasing list of patients and limited resources.
Maybe helpful is an image from a vivid dream I had last week... where I was sitting on the shoulders of my two gvhd team leaders (profs, chief Dr's) and they were trying to let me down, putting me over a chain link fence into a bush. I thought it quite telling.
Anyway, after feeling so negative about all this , partly because I was so scared by my recent gastroenteritis experience ... I think I would have died if I'd been alone. .. but now I'm accepting all this negativity. ... Above everything else, I believe the most powerful medication is positivity and love. They can do what they want, or not, if I don't have long, I want to stay in a positive place in my head and heart. I won't let anyone take that from me , that's not their decision, that's mine.
As you can tell, I had a helpful session with my therapist yesterday.
I'll get off here, much love to you all
Helen
PS. Audrey, your strength is very powerful and has helped me on my journey. You reminded me of a bbc radio 4 programme.. a series on forgiveness.. I warn you, it's not easy listening, but I'm in awe of your strength and your love for your son is really tangible even for me so far away. Thank you so very much.
Michelleanne, thank you for letting us know how you're doing. We are with you in your dark times, sending kindness.
Dave, how's the deep massage idea going? I had lymphdrainage yesterday and as soon as she got deeper it felt good.. thought of you.. I'll see if I can try it too. No stone unturned:) But I guess it's not possible on your thick gvhd skin, hope you can soften it up a bit.
Alison, we are with you on your journey, holding your hand. Maybe you can get up today, hope so.. sending you strength and love.
Bye for now
Helen
PPS, the new interface takes a bit of navigating:)
I hope all goes well for you and you manage to get more frequent Ecp back. Even though I am on Ecp I am still struggling. Unfortunately nothing is helping me yet. I do hope everyone else is making some progress though.
Thank goodness my usual doctor wasn't there and the replacement was super. Listened carefully, took time, very present and focused.
She said something seemed to have gone wrong about my ecp and then her boss came in (she had peeped her) and she said that she couldn't see an acute reason to restart the ecp but because of my reports of symptoms, she would restart it... 2x 2 weekly and then start to reduce... 1x 3 weeks, 1x 4 weeks, with the aim to taper. Relief.
She'll see me again in 6 weeks.
I did the talking (german) and hubby listened. I thought I embarrassed myself a bit , but hubby said it was fine. He wasn't sure she'd understood everything I said, but said it was all ok.
Thank you all for helping me believe in myself. You had a measurable impact on the outcome. I wouldn't have felt as half confident without you all being with me. Sharing here helps me to understand that I'm not from Mars. This is real and I can talk about it.
Comments
Hi beaglegirL
lm so sorry that that you are struggling so much. I know that there’s nothing that any of us can do to take away your pain but I’m glad that you are reaching out as we all want to help you in any small way.
we’re here to listen and try to be with you through this painful journey. People kept telling me that I would begin to accept the loss of my son even though I would never stop missing and living him. It still seems such a mountain to climb and you are just at the beginning of the climb.
youre doing the right thing in reaching out to us and I hope that it helps just a tiny bit to know that we’re all here for you.
sending love ❤️ and all the strength that we can give .
Audrey
Hi all,
Michelleanne, you poor thing... 10 days is a very long time. It will eventually pass. Patience maybe isn't the word... try just to be in the now and get through each day the best you can. Sounds like a nasty version. Hold on tight, it will pass. I agree with everything Audrey has said. You are so kind and supportive to us all here, so strong. Say all those things now to yourself... even out loud if you can. It's one of my meditations... Sounds balmy, but maybe it'll help... we'd say them to you if we could be with you.
Hi Beaglegirl, I'm still up for a little while if you want to write...
... . Much love to you all,
Helen
Hello all,
Audrey, I spoke too soon.... I was brought into the clinic in an ambulance with the emergency doctor yesterday very early. It's dawned on me that they're being very vigilant with your daughter. The fact she's in hospital so often shows how vulnerable she is and therefore they're being very careful with her.
I guess It's one of the major issues of being immunsuppressed.
I have a virus RSV, which is harmless for the majority, and gastroenteritis with a fever, ... the reason for me being admitted. Hopefully off home tomorrow. I was in really bad shape but with IV fluids, nacL , electrolytes etc, and sleeping round the clock, I'm doing loads better.
It was terribly frightening for my family. They're so helpless.
I'll be off here
Much love to you all
Helen
I've been struggling, I'm a bit worried this could be setting of some new gvhd, or making mine worse. I lost my positivity this afternoon.
Thought of you all. Alison, what a hero you are and what a hero Martin was, Audrey, you and your daughter, Michelleanne, your endless chest problems and gvhd, Dave, your endless stuggle with gvhd(... I read a bit with you on Facebook. I hope the massage helps a bit. )
My eyes are getting worse, mouth too, feet are not changing, not improving- I can bend my ankles forwards a bit now though. I guess I'm just still poorly, temperature.
This , our, whole thing, gvhd is sooooo horrible.
The young nurse said it's not superstition that positive people live longer, she sees it herself. She was very sweet to me. I'm sending the message to you.
I think I need to get home and off the IV.
Love to you all
Helen
Hi helen
sorry to hear you are struggling , we are all vulnerable , keep positive and strong with the help of your doctors you will get there , have faith in them aswell as yourselve
we all struggle , look at how far you have come take care ❤️
Thank you dear Michelleanne x
Hi Helen
i am so sorry to hear what has been happening with you. It sounds so similar to my daughter. She was also admitted with the RSV virus . As you say, nothing much for the average person with a good immune system but so debilitating and frightening for those who have a weakened or no immune system. I can understand just how worried your family must have been as I go through this every time that this happens to my daughter .
its so easy for me to say but please try to focus on how far you’ve come . The gvhd is causing you such a lot of grief and sounds horrible. There’s no easy fix but I’m sure that your medical team will do everything to help ease your symptoms even though it must seem to be taking forever for you. The fact that you’ve been and are so unwell due to the virus will be making you feel even lower .
we’re all here with you and will try to lift your spirits a bit .
Dave, I know that you too have an endless struggle with your gvhd symptoms and I’m always thinking about you and hoping that with the help of your team, that something will be found that will help to ease the symptoms .
Michelle, our strong, brave friend who constantly supports us all and is so uncomplaining. I know that you too are having a very hard time . I hope that your visit to the clinic was beneficial and has put your mind at rest a little .
sending hugs to everyone . 🤗
We really do seem to be in this place together. My goodness, it's so helpful for me.
Thank you Audrey for telling me about your daughter's admittance to the clinic for the RSV. It seems to relativise it a bit. Par for the course so to speak. I can't imagine what you're going through with it Audrey. And then your grandchildren on top. It must be like juggling on hot coals.
I find it difficult to know how we're coping. But we are. Somehow. We're here.
I'm back home. Even went outside to stretch my legs for a minute. That did me good. Shuffling along.
Michelleanne, do let us know how it's going if you feel up to it.
Night night all,
Helen
Ps. Dave, the deep massage sounds good.
So glad that you are back home , Helen.
you’re right, we’re all in this together and all here for each other .
i hope you have a good, peaceful sleep in your own bed tonight. Xx
Hello Everyone. I hope that this week has been a little better for you all.
Helen, I hope that you’ve been keeping positive and recovering from being in hospital. My daughter had just had a week in hospital . It seems a repeated pattern of bad cough, high temp etc. Her lungs have been damaged with all the treatment and they’re doing another ct scan to compare with the last one Hopefully no more deterioration. Another biopsy on Monday so a bit of a worrying time .
I think this time of year is challenging for you all. The weather and all the bugs that it brings doesn’t help physically and the long dark days certainly doesn’t help mentally.
Helen and Dave, I know that you both struggle so much physically because of the gvhd and consequently it must pull you down.
please remember that we’re all here for each other and we all care.
❤️xx❤️
Hello all, hello Audrey, Michelleanne, Dave, Alison if you're around ... hope so,
So sorry to hear that about your daughter Audrey, She's in the best place, but such a shame. I hope they can get her temperature down. Is it viral or bacterial, the cough? A cough is so exhausting too. Say hello to her from me ... even though... :)
Maybe she's home already.
Unfortunately they were not to be persuaded with my ecp. My next appointment is 18.march. I'm struggling a bit. Feeling low and lacking any sense that I'm in any way in control. All a bit arbitrary.
My eyes are bad again so I can't talk much, distracted with the pain. They want to fit me with contact lenses if it gets bad again. It's a 4, 5 hour wait in the eye clinic which is awful when I have pain. Dreading it. Don't even know if the lenses will be good. Last time they hurt then fell out.
Oh dear ... I've had enough. It's late and I'm tired, hopefully better tomorrow.
Much love to you all,
Helen
I'd been deregistered without realising it. Glad I'm back in.
Hi helen
so sorry to hear are having such a rough time , hope they can sort something out for you soon
stay strong you can ride the storm ❤️
Thank you Michelleanne. I hope you're finding some peace. Much love
Helen
Hi Alison,
good to hear from you and know you are ok. Although we understand you are still suffering the loss of Martin and will do for a long time to come. Sometimes laying blame somewhere helps us overcome the kiss or account for it as such a loss is so hard to get over. However by continually looking for blame and not accepting what has happened and you cannot bring back Martin is not helping you and tearing you apart. I think you really need to get some serious councilling to help you through this. The hospital will have done all they can to help Martin live and overcome his illness, they have nothing to gain by going down the wrong road. There job is to save lives. If you really want to Perdue this route of blame it it best you employ a lawyer specialist in medical negligence but I think it will cost you a lot, and I am sure Martin would not want you to go down this road he would want you to make the best of what t you have and not waste your time of looking for something that isn’t there. My mother has suddenly come on with severe Alzheimer’s and not got long I have just learnt, I can’t blame the medical profession for not knowing sooner so I can spend more time with her. Unfortunately life is what it is however long or short it is and we just have to make the most of it while we can. I really feel for you and your loss of the love of your life and wish I could do more for you. We are all here for you to try to help you accept the loss and to realise Martin will never be coming back and that you need to make the best of the time you have. We all go the same way in the end.
Dear Alison, words aren't helpful here.
Your and Martin's loss is so painful and unjust. You're understandably in a very dark place. Nothing I say could help.
I too am at the mercy of doctors who will make mistakes because they are human. Unfortunately and also fortunately for me I'm at a university hospital which trains young haematology oncologists... my latest doctor leads me to desperation ... obviously early on in his specialised training .... but we need doctors... they are human, they will make mistakes... but essentially they have our interests at heart... they give an oath to that to be able to practice. But it's not helpful if they're inexperienced and not part of a good team.
I think money might also play a role ... I'm not privately insured so they may be trying to save money by reducing my treatment. Dave, for example has a poor quality of life because the government won't pay for a necessary drug. It's cruel, but it's the real world.
I did sadly have dark thoughts recently ... they'd save money if they lost me. That might play a factor in their decision-making too. Such things happen in the real world. Maybe they'll decide to give up on me. It will no longer be in my hands. They decided to give me the stem cell transplant although I was recently told by my doctor that I was so far gone, I was not expected to live and they took a risk with me. I think he was looking for gratitude and recognition from me.
You and Martin fought so long and hard. Letting go is now even harder.
I don't know what to say ... I certainly can't say anything helpful because there isn't any way to help. I guess time and love are all that can help. When my time's up, it'll hopefully go quick and it won't be in my or hubby's hands.... when, how. I hope it'll be in the hands of a well experienced trustworthy doctor, but I think that's for the Story book and not real life. We're totally vulnerable.
Dear Alison, I'm sure my words are not helpful, but it's just my thoughts shared for you.
I have a request, could you give me a bit of feedback? I'd like a bit of dialogue with you if you feel you can manage. You are such a treasure and it'd be nice to feel a bit closer.
... but maybe it's just me being silly:)
Much love to you and our lovely gang,
Helen ... I'll just hit send ... I hope it's ok.
Hi Alison,
please realise we are always here for you. I wanted to be totally honest with you and want you to come out of this a stronger person. I want what is best for you and at the moment you are really struggling and probably very lonely and your mind is going all over the place looking too deeply into things and finding things that are never there. My ex wife was the same she was in constant depression since being a child, never really worked, found nothing interesting in life to do so was always imagining things that were not there. I am also now like this, now I am off work with gvhd all I do is really either sleep or sit and watch telly and my mind plays on me and I look for things that are not really there or looking for fault why I do not seem to be recovering. It is because I have too much spare time and not fulfilling my time with something more positive. Ie a pastime, working, spending time with friends. You need to look forward now and plan where you or going now or you can stay where you are now looking for continual blame and making your own life more of a mess and also more unhappy. Which would Martin want for you? What do you want for you really? Continually thinking of you.
Thanks Dave, for your honesty, you give me strength.
That's more or less where I am now. I do nothing, can do nothing, neglecting any contacts that are still hanging on, which is getting fewer and fewer. ... I'm getting better at Sudokus. They say to combat stress it's good to learn something... my learning was Sudokus. I'm not strong enough to meet people though, can't go to choir or gymnastics cos I'm suffering. I long to get the ecp back. I was doing so well.
This is a horrible place to be. I had a real downer a few days ago, cried a lot. It feels more numb now, which is good. Numb is the only way to be in this. Acute feelings are just tooo much ... poor you Alison... a big long hug from us all... terrible.
Love to you all and thanks again Dave. You might be right about the spare time, but what are we supposed to do when we don't have the energy for anything else. Acceptance and compassion. It's wearing thin. X
Hi Helen,
I too am finding it very hard. Been playing sudoku for a long time while I am like this. Yesterday I felt maybe I was able to stand up for a little longer and my range of motion was very very slightly better, today things seem worse and the skin on my legs seems tighter. Seems always to be one step forward and then 4 back. It is sorry for the pun living ****. I want so badly to improve even at a slow rate. I know it is possible as I see others stories where they seem to improve, I want a purpose in life. We all struggle so much with this horrible disease although all our suffering seems to be for quite different things.
I am hoping for us all we will soon have better things to come soon.
iv sent you a message Helen x
Thank you so much for YOUR kind words Alison.
As I said to Michelleanne, I prefer to keep my focus here with our little trusting group at Anthony Nolan. I'm maybe not so good at spreading myself about. This group is very special to me and I hope it stays like that for a while longer. I'm sure it'll change at some point, but you're all very valuable to me.
You're a darling WITH your posts Alison, all of them ... meltdown or not. If you apologise I feel like there's some sort of reason for you to apologise, as if we might need an apology, but there's absolutely no reason for you to apologise. We share, love and trust here exactly because it's safe for any one of us to have a meltdown. Maybe I'll be me next, and you'll be there for me.
I don't know where I'd be without this safe, compassionate place. I really hope that you can let yourself share with us without any negative feelings from your 'old film' as I call mine. Thank goodness when I was in the clinic for the 9 months, a very good therapist said to me that she felt I had people around me who loved me, but I was living in my head in my 'old film', (a place of shame and negativity). It was the message that turned me around. I work at living in the now and remembering that those around me .. my family .. love me regardless of what's going on in my head, they want me to feel safe with them and share if it helps. We are those people for you at the moment Alison. Whatever is going on for you in your head , is not here and now. We love you just the way you are, whether you believe it or not. Now that feels good to write ... because I know it's true for me too.
It won't always be like this Alison. But for now it's ok. it could be worse .. difficult to imagine how, but it could be.
I hope I'm making sense.
I'm happy for you to DM me if you need to. I prefer to keep to the group. If anyone from outside wants to read our posts, they're welcome, it's all totally human and I think we're great, warts and all.
Better get off here,
Love to you all,
Helen
I'm just going to have to hit send again... be brave Helen:)
One of my favourite quotes from the actor Robin Williams:
"A friend is someone who listens to your bullshit, tells you that it's bullshit, and listens some more."
That's one of the great gifts of this group. You keep me in check, night night. X
Hi everyone. It makes me very sad to read how you are all suffering in your own way and for different reasons.
Dave and Helen , I can only imagine just how difficult and downheartening your illness is but Dave you are right- your medics are doing everything possible to help you and when they lose a patient it is very hard for them. Not the same loss as a loved one but still a loss. Anyway, I think that Helen and you are stronger than you both give yourself credit for. You both are suffering dreadful symptoms and yet you get up everyday, do sudokos and try to help others who desperately need compassion and support .
Alison, you are in the first stages of grief and your thoughts are everywhere. No one can tell you how to think or not think but you will work it out. My son was mown down by a speeding driver. I have quiet meltdowns but try to put on a brave face to those around me. This is hard work but it’s my way of getting though each day. Not right, not wrong .i don’t want to become bitter and hate the driver as I know that’s not what my son would want. But that’s just my way. I really hope that although you have got a lot of grief to wade through and it will never go away, that eventually you will find some way to accept what has happened .
And so all my friends, we all have our own battles to fight but we all have each other and care for each other .
Sending love ❤️
Morning all
so sorry to hear of your struggles , I haven’t been on this group , as I didn’t feel I could help you in anyway , with my words
im struggling more mentally at the moment
I have the best treatment and the most wonderful consultants and professors , I never google or question their treatments as I feel they know more than me , it’s their field , they are there to help and treat and keep us alive , I’m so grateful for that as I wouldn’t be alive without them , now I feel it’s my turn to try and do my best to be the best I can be
hope things get sorted for you all please have faith and stay strong ❤️
Hi Michelle
Lovely words that I think we all have to remember especially in the even more difficult times .
you have been such a strength to all of us in this group . Please remember that we are all here for you too . I’ve seen via my daughter how mentally stretching this illness is for you all and also for the relatives
We’re a team here so no one is on their own with their battles
Sending love ❤️
Morning all,
I agree Michelleanne, it's our turn to be our best... they gave us the gift of life with the stem cell transplant.
Interestingly, last night , hubby met a close friend who also had a sct in the same clinic as me, .. two actually, the first didn't work. He, Christoph, has no gvhd but lives in fear that the leukaemia will return because he has no chances left. But the reason I mention him, .. Christoph told my hubby that my problem with them not continuing the ecp treatment etc. Is par for the course, normal.. because they have an ever increasing list of patients and limited resources.
Maybe helpful is an image from a vivid dream I had last week... where I was sitting on the shoulders of my two gvhd team leaders (profs, chief Dr's) and they were trying to let me down, putting me over a chain link fence into a bush. I thought it quite telling.
Anyway, after feeling so negative about all this , partly because I was so scared by my recent gastroenteritis experience ... I think I would have died if I'd been alone. .. but now I'm accepting all this negativity. ... Above everything else, I believe the most powerful medication is positivity and love. They can do what they want, or not, if I don't have long, I want to stay in a positive place in my head and heart. I won't let anyone take that from me , that's not their decision, that's mine.
As you can tell, I had a helpful session with my therapist yesterday.
I'll get off here, much love to you all
Helen
PS. Audrey, your strength is very powerful and has helped me on my journey. You reminded me of a bbc radio 4 programme.. a series on forgiveness.. I warn you, it's not easy listening, but I'm in awe of your strength and your love for your son is really tangible even for me so far away. Thank you so very much.
Michelleanne, thank you for letting us know how you're doing. We are with you in your dark times, sending kindness.
Dave, how's the deep massage idea going? I had lymphdrainage yesterday and as soon as she got deeper it felt good.. thought of you.. I'll see if I can try it too. No stone unturned:) But I guess it's not possible on your thick gvhd skin, hope you can soften it up a bit.
Alison, we are with you on your journey, holding your hand. Maybe you can get up today, hope so.. sending you strength and love.
Bye for now
Helen
PPS, the new interface takes a bit of navigating:)
I'm off to the clinic this morning to plead my case for my ecp to continue. Taking hubby along cos he's a native speaker and I'll need the support.
I'll keep you posted.
Thanks for being with me you lot. You're with me there too, especially for this appointment.
Love
Helen
Hi Helen,
I hope all goes well for you and you manage to get more frequent Ecp back. Even though I am on Ecp I am still struggling. Unfortunately nothing is helping me yet. I do hope everyone else is making some progress though.
sorry not up to writing much
Hi all
helen I hope you get the treatment that will help and you get ease soon , also the same goes to you Dave , stay strong ❤️
Thank goodness my usual doctor wasn't there and the replacement was super. Listened carefully, took time, very present and focused.
She said something seemed to have gone wrong about my ecp and then her boss came in (she had peeped her) and she said that she couldn't see an acute reason to restart the ecp but because of my reports of symptoms, she would restart it... 2x 2 weekly and then start to reduce... 1x 3 weeks, 1x 4 weeks, with the aim to taper. Relief.
She'll see me again in 6 weeks.
I did the talking (german) and hubby listened. I thought I embarrassed myself a bit , but hubby said it was fine. He wasn't sure she'd understood everything I said, but said it was all ok.
Thank you all for helping me believe in myself. You had a measurable impact on the outcome. I wouldn't have felt as half confident without you all being with me. Sharing here helps me to understand that I'm not from Mars. This is real and I can talk about it.
Love to you all, just a quicky today to update,
Helen
Morning helen
thats good news , I bet you are so relieved at that 🤞it brings you some ease ❤️