i don’t eat spicy food , I can’t manage dry food , I have a gel for dry mouth , doesn’t really work my mouth gets very sore and lumps in my mouth and tongue,I have I’ve been given a steroid base tablet I put in water and rinse my mouth upto 4 times a day when needed , or twice a day when not as bad , it doesn’t taste very nice , but it works I get them on prescription they are called( prednisolone)don’t know if you’ll get them over there ❤️
Hello everyone . I’m so sorry to hear how you are all suffering in different ways with gvhd. I think you all do so well to keep going, being so interested in others and keeping as positive as possible .
Helen, I’m glad that you feel that the ecp is helping and I really hope that you continue to benefit from it.
Michelle, the mouth and throat gvhd sounds so painful and I’m glad that the steroid tablets are helping.
Dave, we haven’t heard from you for a while and we would love to hear from you, whatever is happening remember that we’re all here for you.
My daughter’s biopsy results came back negative which was a big relief . Her consultant is pleased with her progress and says that if she can get though the winter without being hospitalise, then that will be a big step.
She is at home with her wee boys and working full time , mainly from home with a few visits into work . I can’t believe how far she has come and so hope that she is moving in the right direction.
The criminal trial is moving forward now . The highest people from the crown have finished their investigation and the charge is definitely death by dangerous driving. The driver is pleading not guilty so if he doesn’t change his mind, it will be a criminal charge . How I wish this was over and we can be left to grieve Paul with nothing else going on. Time isn’t making our grief any less real.
Anyway, I don’t usually bring my life into this group but thought you might like an update .
Thank you Audrey, I needed that bit of info. You're always there for us and now I can understand you better. Please let me know if you'd rather I didn't mention it. It is so exhausting and I guess it might be helpful to have space where it's not mentioned.
I'm thrilled to hear that your daughter is moving on. That's terrific news. So wonderful. I'm wishing that she can keep free of any setbacks, but I suppose it's realistic to expect some but trust that her immune system is getting stronger every day, and she's young, so she has very good chances. Also because she had such a strong gvhd reaction she's got even better chances to not relapse. It warmed my heart to hear about her. I'm very relieved, for you all.
I so very much hope that the whole terrible ordeal is over as soon as possible so that you can start to find the peace of mind and space to grieve. It's so important for your own wellbeing and health, mental and physical.
Yes, Dave, you've touched base in fb but this group is so precious, I do hope you call by sometime and let us know how things are.
I try not to use my phone too much, and give myself boundaries but just a sign of life would be lovely.
Michelleanne I was recently given a free trial losenger pack at my dentists for dry mouth. They're not practical in the day but they seem to be really helping. I put one in at night. It sticks to my gum, cheek and dissolves over time. Theyre called xylimelts or something like that.. from oracoat.com or something like that...sorry, wrapper is ripped, can't read it. The 'volon' mouth gel , although disgusting, also really helped. I'm also find brushing with bicarb after interdental brushes and normal brushing helps. Maybe electric toothbrushing might help because it's ggentler.i do hope things pick up a bit for you... someone might have some experience on the fb site.
it’s nice to hear that we are doing a little better , we do get ready for a bit positivity it brightens my day
I was at clinic on Thursday my professor is very pleased with me progress and to continue with my care and meds
my flare ups are normal and part of the course so I’m happy with that
I’m thinking more of my donor at the minute I read a saying that their donor was their genetic twin I like the sound of that (haha) keep strong my friends ❤️
I keep wondering how you're doing Audrey? Are things moving forward? I'm with you in my thoughts, especially at the moment. I hope your daughter's making headway. That's lovely to think of.
I'm off to visit hubby in a clinic in Hamburg today. I'm flying from the south of Germany, alone with registered assistance. He's had a new hip fitted.
Unfortunately I'm in sort of panic mode now. I think it was all that time in the clinic which has turned me into a rabbit in the headlights when Ihave something with an important deadline. Horrible. I'm trying to calm myself. Just writing this to you three is helpful. It'll pass.
I'm active in Facebook in the gvhd page and tiny secret garden. It does me good to focus on other things. I'd love to meet you all there if it is an interest.
I still have quite nasty pain in my feet right now, although the new plasters are better than before. It's really nasty. Sorry to complain... it's helpful. It'll pass.
, I hope things are stable for you Dave, maybe even a little better? Michelleanne, I hope they've been able to find a solution for your lungs and the mouth gvhd is allowing you to eat without pain.
Oh dear, I'll just take painkillers... that'll get me through.
The flight was cancelled as I sat at the gate in my wheelchair. What's happening... bonkers.
We've got heat alarm level 1. So I'm in doors with shutters down.
But the airport saga pushed me and that was good. I even went on a bus first time in 3 years. Lots of help and support but still... I do stairs backwards.
Hello Helen . It’s good to hear that you are moving forward . I know that you have a lot to contend with and that you are in constant pain but you do so well to keep cheerful
i think you are amazing to plan to undertake a plane journey on your own . I would be hard pushed to do that and I haven’t been through half of what you have been through . I know that it was cancelled but the fact that you were willing to go says a lot about your strength of character. Keep up the positive attitude as it really does help
My daughter caught Covid and you won’t believe this but she wasn’t really ill with it just chronically tired for a week . I hope that this means that her immune system is kicking in although she is still having 4 weekly immunoglobulin transfusions . Maybe that’s what helped .
can I ask - what’s the tiny secret garden?
Dave and Michelle , I’m always thinking about you and hope that you are having some better days although I am worried about not hearing from you, Dave, in a while
helen reading your post you sound such a different person , very positive and determined and lovely to hear , Dave I hope you are doing ok ? Audrey It sounds like your daughter is doing amazingly well I’m so very proud and happy at what I hear ❤️ my chest is a lot better nothing else to do at the moment 🤞my gvhd is still very painful but the meds help we all have learned to cope in our own way ,
im also intrigued in the tiny secret garden what is it ?
Tiny secret gardens is a Facebook group. I'm also in gvhd upside and gvhd. A few others too if you're interested, let me know.
Dave, it was lovely to see you light up about Alison's horses. It's a good sign she's not around, but a shame particularly for you.
I have a tiny garden, it's a real overgrown cottage garden that has turned into a jungle, but I love it. but it's not without its dangers. My clinic team Dr said I should do things that give me a quality of life. I've had the tick vaccination, but still need lots so I do have to be careful. Your chest worried me Michelleanne because it's so easy to get afungal infectionn in the garden.
I do things like cut my hedge with a pair of hand clippers, but it keeps me out of mischief. Bending down is dodgey with my low blood pressure but I just take it very slowly. I'm sure shouldn't do have the things I do.
The failed trip to Hamburg did me good and I'm now planning to visit hubby at his orthopaedic rehabilitation clinic ... it'll be our sort of 'summer holiday', Ican share his room . Also ill get mobility assistance for the train trip and send case ahead. It's lovely to be able to share this with you. I'll get to see the sea and I miss the sea terribly, grew up in Southampton.
The new second skin plasters 'comfeel+' are good and have made it possible. .. when they've been on for 3 or 4 days I have little pain, I'm just not very mobile and very weak and suffer with my eyes.
Auds, have they told you how long the process will go? I hope they can get it finished soon. I'm afraid I can't imagine what you're going through. it must be tortuous.
it's great about your daughter, i'm so pleased your daughter got through covid so well. Maybe it's the antiviral meds. It was the same for me, and I had it twice. hardly noticed.
I just want to check in and hope that you are all managing to trundle along .
Helen, your last text was so upbeat and I’m really hoping that your mobility and general well being is still on the up. I also hope that you managed the journey to be with your husband and that went well. Hopefully, seeing the sea will have given you a lift!
Michelle, I hope that the pain meds are still helping your gvhd . I know that the fatigue is not great and also hoping that with lots of rest that it is improving a bit.
The weather here is dreadful ! I’ve had a couple of weeks without family as they’ve all been on holiday so hoping that the sun returns next week when my child duties also return.
Dave, we haven’t heard from you in a while, but you are always in our thoughts .
i think we all get pleasure in our gardens and Helen, I joined the tiny garden group !
I often wonder how things are going, with you all...
This is a long one..
Michelleanne, have you got a definitive diagnosis for your chest problem? Or is it getting gradually better? I do really hope that you start to see some improvement, however small, just to give you some hope and motivation... although hope is not my favourite word.. it almost feels cruel.
Audrey, lovely to hear from you... how are you?. I sometimes wonder how you and the family are doing. It sounds quite good... at least it sounds like you're functioning.. so important for the children. Is the court case over, can you draw some sort of line to give you some space?
Dave, I think of you often... remember back to when I'd just got home, crawling up the stairs, eating pot noodles was the best tip you ever gave me. Real gamechanger back then. How are you? I'd love to hear from you?
My trip to Hamburg, ... I can't remember where I left off, the flight was cancelled, at the departure gate. But thankfully I have an emergency helpers whatsapp group and someone picked me up. The wheelchair assistance was good but not much use when the flight's cancelled. An eye-opener.
Maybe it was meant to be cos I did get up there on the train two weeks later nearly 8 hour journey.. Cheap deal on German intercity, and picked up from station. I was exceptionally well organised for the trip.. out of fear...... train toilets... just the thought...(gloves,mask, spray,wipes) , drinks, packed lunch, electrolyte etc. My biggest fear was the air-conditioning breaking down.. that's dangerous for me,... I'm like a slug on a hot pavement... can feel myself shrivelling up in heat.
Anyway, you'd have been proud of me.
Hubby's reha place was really ugly but functional and clean with a wonderful beach. I ate loads , drank plenty of water, and slept well.. The sandy beach was the gamechanger.. wrapping my feet tight with my lymph drainage bandages with my new second skin plasters, and had new shoes, 3 sizes too big-I'm a 6 and these are a 9. but perfect for my huge wrapped up feet and ankles. And I walked on the sand and it felt like someone was scratching my itchy back, but my feet... felt better than a massage. Only painkillers rarely night. It has had a very good impact on my mobility. I now walk every morning for 20 minutes here at home, has to be before 7.30 though, otherwise it's too hot. I still have 3 layers of bandages on my feet, the wounds weap and stink but my Dr said she thinks the wounds look good which is great. One deep wound is closing.
I'm inside all day cos I can't cope with heat or sun, and I garden in the evening on a camping stool before/whilst it's getting dark. I think that's sport too. My friends are all deeply moved and do a double take.. it is amazing. But my son just said he can't bear to see it because the last time I was so good, that within a month I was on my back hardly able to speak. But it's great for now!! Please take my energy for yourselves. .. we're all in phases.. things won't always be like this. We're on our own tortuous journies. But our suffering is giving us magic powers.
I'm getting scleral lenses fitted mid August which will be a challenge over 2 or 3 months, but the Dr said it'll be an improvement.
I won confidence from my visit to the rehab with hubby. It was cheap too thank goodness, in his room even with view of open sea in the distance.
I'm coming back to England next week with family to visit family. Close family isn't close, so it's very whistle stop. I'm looking forward to sitting on a bench with picnic/thermos deciding together who's going to have which crisps, hopefully near the sea.... The joy of banalities is huge. This morning I was for the very first time, grateful to my donor. He gave me a life ... even a life worth living. Even reading this makes me cry a bit (still don't produce tears)
Of course I'm not out of the woods.. had a mole removed Tuesday. Tiny bump in my neck... but I'm going to go anyway.
I need to start live vaccinations mmr et al. soon. And hopefully tapering meds (really frightened of that) There's plenty of negatives if I want to worry.
I think it was a turning point to know I can go to Switzerland if it gets really bad and I can choose it. I don't know if I'm allowed to write that here? It's called veritas I think. Switzerland is only an hour away.
Do you remember all those lovely cuppas we've shared... oh my, you're such a special smashing bunch... you've helped me so very much.
I do hope you know how helpful you all have been on my journey. Sounds strange, but you've made a considerable difference. I can't remember your favourite biscuits or if you like to dunk? 😀
I thank you all with all my heart and send you love and kindness to maybe slightly soften your very hard journeys. I wish I had a magic wand.
Thanks Michelleanne, sorry to hear that about your chest diagnosis ... but impressed that you're keeping positive some how despite it all... I'm sure you have your ups and downs though. Hoping you can feel a bit of control over it, that the antibiotics can keep it in check a bit.
My initial ' up' after my little holiday is gone, but I'm still in a better place than before....a bit, , but still something.
The heat is extremely challengng. Learning to cope.
Hello, I’m struggling with a cough and cold and my old gvhd feet… I’m also struggling with a new mobile which I can’t understand. .. and on the back of all that, I’m supposed to be enjoying myself with family in my homeland… first visit for 5 years. Really exhausting, they want to help but I’m feeling stifled, a very understandable dynamic.
I feel stupid saying it.. it’s only a cold.. but my dear brave team, you know how it is.
I do hope they’re sorting you out michelleanne, and that you’re getting support Audrey.. I’m afraid I can’t help at all.. apart from sending my love. … sending lots of it.
a new phone sounds very frustrating , I suppose you’re family are just trying to help , you’ll be in a routine at home , in my mind I can do all sorts of normal things , I try so hard to do it , but then I struggle with my fatigue and pains in my legs it’s a vicious circle
Just thought I would see how everyone is doing. I’m still trying to navigate life without Martin. However, I’m trying to do positive things that would make him proud. I’m holding a motorbike ride on Aug 25th in aid of Anthony Nolan and Cornwall blood bikes. Reading your posts it seems that everyone still has their everyday struggles. Keep fighting and stay strong. Sending love to you all x
Thankyou Michelle I hope he is 🩷 I’m also in the middle of booking my advanced motorbike test so I can can become a volunteer blood biker as it’s something very close to my heart. Hope your well? Xx
I’m sorry that I haven’t been on here for a while . A lot going on!
Helen I’m so sorry that you are feeling under the weather and totally understand that a cold for you is not
simply a cold! I think you’ve done amazingly well to go on holiday and I hope that whether you are still on holiday or home , that you are looking after yourself . Remember to reflect on all the positive things that you have been doing .
Michelle , I am so sorry that you are being blighted with fatigue and painful legs . Although different causes , I can so empathise with these horrible symptoms . Like Helen, you do amazingly well to conquer every day and every challenge that comes your way.
Beagkegirl, it is so wonderful to hear that you have turned your grief with Martin into positive actions . He would be so proud of you as we all are.
Like all of you, life with me hasn’t been so easy with different circumstances. Firstly my good news- my daughter’s final biopsy came back negative and her consultant is delighted with her progress. She’s still having her monthly immunoglobulin infusions but apart from that, leading as normal a life as possible .
The driver who mowed my son down has at last pleaded guilty. This has led to a mixture of emotions . The sentencing will be in the High Court so another ordeal to get through.
my husband is having quite a big op at the beginning of September so more worry.
However, it’s not all gloom and doom as we’re all getting up each morning and wading through the day. This group means such a lot to me and my heart is with you all. ❤️❤️
I got the news about our dear Dave passing just before my trip to England. It has really affected me. I don’t think he was that unwell, apparently an embolism. I was relieved at least that he went very quickly. So sad. I think he had a challenging home situation. I miss him. He was one of my first contacts here. I’d got back home from the clinic a few weeks before, we both were on all 4s climbing up stairs so weak. I felt safe with Dave. I’d love to hear from you 3 about him, maybe it’ll help. He introduced me to pot noodles which was a game changer.
one of the reasons I’ve been out of the group for a while is my new phone, I have had difficulty with the app, so it’s good for me to be able to check in again with you. I’ve also had a flare up of the gvhd. Eyes and feet, and general gvhd body/brain. My local gp dr agreed with me yesterday and told me sitting and standing are bad for me, lying and walking are good, but with my bandages and painkillers. She thinks I probably have a hernia too but that doesn’t bother me. I just can’t stand this gvhd.
im sorry to hear you’re struggling too Michelleanne. It’s endless. I hope hubbys op goes ok. It’s not easy when your both incapacitated.
End of July , my hubby got his hip replacement renewed. It went ok. He’s walking fine without sticks. Sometimes I find it hard to believe what’s happened in the last few years. But you all know what I mean. I wish it felt less surreal. I think I was in the clinic too long…it’s affected my sense of time. I hope it comes back.
Audrey, it’s good to hear from you. You certainly do have so much going on.. and you’re still there, thank you, I really appreciate it. Thank you so much for updating us.
Im relieved to hear that the driver has pleaded guilty. It must be a tiny relief in the whole surreal terrible experience for you. Thank you for sharing that with us. I sometimes wonder how you’re doing so that’s helpful.
Im delighted about your daughter. That’s great news, please let her know that we too are proud of her. She reminds me of a chance meeting in the sct clinic about a year ago, he’d had his sct for leukaemia in his 20s and he was about 60, sporty and fit as a fiddle. I’ll never forget him.
My trip to England, my homeland, worked out really well apart from me being ill for the first few days and now paying for it with my flare up. But it did us so much good.
Alison, did you say you bumped into Dave’s sisters at the cemetery? Could you explain, it’s really a veeery small world. It’s wonderful to hear from you.
I’ll be off here, I’ll download the app and see how it goes…
None of us are on here so regularly but I think we still have a closeness with each other .
i hope that the past week has gone as well as possible for everyone .
Helen, I’m sorry that when you were last on here you were having a bit of a dip. I think that was understandable after your trip to England which will have taken so much energy and then the news about Dave . He was such a kind person and despite all his challenges ( which were many) , he still tried to help us all and always spoke kind words
My daughter now has shingles which she tells me that people who have had blood cancer are more prone to getting. She’s not very well just now with a spiked temp hovering. I always worry so much when this happens . I suppose I’ve got to differentiate between cancer and a weakened immune system . Would you all agree as you are much more knowledgeable than me?
Michelle, I know that you have your everyday struggles but I also admire how you soldier on and never complain. I think that everyone on this site is a warrior and I really hope, Helen and Michelle that you stop and give yourselves a pat on the back occasionally .
we’ve been writing a family impact statement for the courts which has been very hard. Going over the accident while my daughter was fighting for her life , still makes my blood run cold
Anyway, we’re all here and soldiering on every day. Sending hugs and lots of positive vibes x
Hello Audrey, hello Michelleanne, and maybe hello Alison ,
yes Audrey, you’re right, we don’t check in so often, but, like you, this little bit of contact is ‚there‘ even when not active.
Audrey, just a bit of info, at least if only anecdotal… I feel very proud, relieved, grateful… that I’m NOT a cancer patient.. like your daughter… we no longer have leukaemia… but our constant struggle is with our immune system.
Unfortunately, although I’ve been on holiday on and off since the end of July, I’ve been on antibiotics twice, visited 2 doctor's practices abroad and they’ve had to call my home clinic for diagnosis and treatment, I ve had to call my old clinic at night whilst on holiday with a temperature… my poor hubby… it’s not your usual idea of a holiday, but it’s the nearest thing we can get with our compromised immune systems.
im sorry to hear about your daughter’s shingles Audrey. Apparently it’s tortuous pain. I really look forward to getting the vaccination but can’t have any live vaccinations until my body is symptom free of gvhd, which will be a long time. I dread getting it.
Michelleanne, how is your chest/lung gvhd? Can you sleep? Are you mobile? What’s your oxygen saturation? Unfortunately, I’ve had a hacking cough for a few weeks now. It feels loose but might get it checked soon.. my lung function test was clear in June. What do you think Michelleanne? Could it be gvhd lungs?
Audrey, maybe it’s reassuring, maybe not.. but your daughter has age on her side and she will get through this… it’ll probably be a bumpier ride because I’m sure her boys will import bacteria.. can’t be helped. It’s just most important that whatever she gets, she must not get a septic shock. That means, at the slightest temperature, she must get medical advice as to what she should do.
if an infection is stable, then I don’t worry… I’m just frightened of a sepsis, which was why I always have a very clear action plan and wherever I am, if I get a temperature, I start it, take active measures, whenever, wherever.
I hope that helps.
Apart from that I don’t think you need to worry about her. The shingles is something that she has to somehow get through. Oh my… I do feel for her.
I‘ll get off now.
I hope I can access the site more easily now.. I locked myself out of my phone for about a week. But I’m getting more confident with the iOS system now… not an easy shift as a digital Neanderthal er.
i haven’t been on for a while but always thinking about you both.
Michelle, I hope that the gvhd is backing off a bit and the fatigue is not as bad as it was a few weeks ago. I know how challenging every day is and I also know how both yourself and Helen, bravely move forward .
Helen, thank you for all the advice re my daughter . The shingles is getting her down a bit as the dreadful itching is stopping her from sleeping. However , like my warrior friends here, she’s plodding on.
Helen- how is your cough? Have you had it checked out. It’s bad enough for the healthy person to put up with all the coughs , colds etc but I know how much more difficult it is for you to navigate your way through / round these setbacks .
Anyway, I’m sending you both love and hope that you can enjoy the changing colours into autumn. ❤️❤️
were all struggling in our own way ,I’m trying now to get my had round now that I was a cancer patient , and that I am a survivor just like you both it’s hard when my mind wonders back
my gvhd is manageable but sore
I really hope you don’t get many setbacks now the winter is coming round ,
audrey I hope your daughter gets some ease from her shingles and she gets on a even keel
im hoping that this week is going not too badly for you both .
we are definitely into autumn and the leaves are tumbling down here. Beautiful colours to lift our spirits .
you are both definitely survivors and don’t have cancer, just like my daughter. I know that the effects of all your treatment and a weakened immune system , makes life challenging and I’m in awe of how you plough on, taking each day as it comes .
my daughter’s shingles is very painful . Her gp says that it’s a bad dose and because of everything that she’s been through, this will be making it worse! However , like you two strong ladies, she’s battling through. We’re actually going to the theatre on Saturday - a mother and daughter treat . This was so difficult to imagine even a year ago!
Always thinking about you both and sending hugs . 🤗
Comments
Hi helen
i don’t eat spicy food , I can’t manage dry food , I have a gel for dry mouth , doesn’t really work my mouth gets very sore and lumps in my mouth and tongue,I have I’ve been given a steroid base tablet I put in water and rinse my mouth upto 4 times a day when needed , or twice a day when not as bad , it doesn’t taste very nice , but it works I get them on prescription they are called( prednisolone)don’t know if you’ll get them over there ❤️
Hello everyone . I’m so sorry to hear how you are all suffering in different ways with gvhd. I think you all do so well to keep going, being so interested in others and keeping as positive as possible .
Helen, I’m glad that you feel that the ecp is helping and I really hope that you continue to benefit from it.
Michelle, the mouth and throat gvhd sounds so painful and I’m glad that the steroid tablets are helping.
Dave, we haven’t heard from you for a while and we would love to hear from you, whatever is happening remember that we’re all here for you.
My daughter’s biopsy results came back negative which was a big relief . Her consultant is pleased with her progress and says that if she can get though the winter without being hospitalise, then that will be a big step.
She is at home with her wee boys and working full time , mainly from home with a few visits into work . I can’t believe how far she has come and so hope that she is moving in the right direction.
The criminal trial is moving forward now . The highest people from the crown have finished their investigation and the charge is definitely death by dangerous driving. The driver is pleading not guilty so if he doesn’t change his mind, it will be a criminal charge . How I wish this was over and we can be left to grieve Paul with nothing else going on. Time isn’t making our grief any less real.
Anyway, I don’t usually bring my life into this group but thought you might like an update .
Sending love to my brave, resilient friends . ❤️
Thank you Audrey, I needed that bit of info. You're always there for us and now I can understand you better. Please let me know if you'd rather I didn't mention it. It is so exhausting and I guess it might be helpful to have space where it's not mentioned.
I'm thrilled to hear that your daughter is moving on. That's terrific news. So wonderful. I'm wishing that she can keep free of any setbacks, but I suppose it's realistic to expect some but trust that her immune system is getting stronger every day, and she's young, so she has very good chances. Also because she had such a strong gvhd reaction she's got even better chances to not relapse. It warmed my heart to hear about her. I'm very relieved, for you all.
I so very much hope that the whole terrible ordeal is over as soon as possible so that you can start to find the peace of mind and space to grieve. It's so important for your own wellbeing and health, mental and physical.
Yes, Dave, you've touched base in fb but this group is so precious, I do hope you call by sometime and let us know how things are.
I try not to use my phone too much, and give myself boundaries but just a sign of life would be lovely.
Michelleanne I was recently given a free trial losenger pack at my dentists for dry mouth. They're not practical in the day but they seem to be really helping. I put one in at night. It sticks to my gum, cheek and dissolves over time. Theyre called xylimelts or something like that.. from oracoat.com or something like that...sorry, wrapper is ripped, can't read it. The 'volon' mouth gel , although disgusting, also really helped. I'm also find brushing with bicarb after interdental brushes and normal brushing helps. Maybe electric toothbrushing might help because it's ggentler.i do hope things pick up a bit for you... someone might have some experience on the fb site.
Love to you all, thanks for being there.
Helen
Hi all
it’s nice to hear that we are doing a little better , we do get ready for a bit positivity it brightens my day
I was at clinic on Thursday my professor is very pleased with me progress and to continue with my care and meds
my flare ups are normal and part of the course so I’m happy with that
I’m thinking more of my donor at the minute I read a saying that their donor was their genetic twin I like the sound of that (haha) keep strong my friends ❤️
That's nice... I can bond with that idea, my genetic twin.
I do hope your mouth isn't too bad Michelleanne. Mine was so bad I could hardly brush my teeth. It's better than it was... far from normal.
Night night 🌙
Hello you dear lot.
I keep wondering how you're doing Audrey? Are things moving forward? I'm with you in my thoughts, especially at the moment. I hope your daughter's making headway. That's lovely to think of.
I'm off to visit hubby in a clinic in Hamburg today. I'm flying from the south of Germany, alone with registered assistance. He's had a new hip fitted.
Unfortunately I'm in sort of panic mode now. I think it was all that time in the clinic which has turned me into a rabbit in the headlights when Ihave something with an important deadline. Horrible. I'm trying to calm myself. Just writing this to you three is helpful. It'll pass.
I'm active in Facebook in the gvhd page and tiny secret garden. It does me good to focus on other things. I'd love to meet you all there if it is an interest.
I still have quite nasty pain in my feet right now, although the new plasters are better than before. It's really nasty. Sorry to complain... it's helpful. It'll pass.
, I hope things are stable for you Dave, maybe even a little better? Michelleanne, I hope they've been able to find a solution for your lungs and the mouth gvhd is allowing you to eat without pain.
Oh dear, I'll just take painkillers... that'll get me through.
Love to you all
Helen
The flight was cancelled as I sat at the gate in my wheelchair. What's happening... bonkers.
We've got heat alarm level 1. So I'm in doors with shutters down.
But the airport saga pushed me and that was good. I even went on a bus first time in 3 years. Lots of help and support but still... I do stairs backwards.
I'm feeling positive.
Love to all,
Helen
Hello Helen . It’s good to hear that you are moving forward . I know that you have a lot to contend with and that you are in constant pain but you do so well to keep cheerful
i think you are amazing to plan to undertake a plane journey on your own . I would be hard pushed to do that and I haven’t been through half of what you have been through . I know that it was cancelled but the fact that you were willing to go says a lot about your strength of character. Keep up the positive attitude as it really does help
My daughter caught Covid and you won’t believe this but she wasn’t really ill with it just chronically tired for a week . I hope that this means that her immune system is kicking in although she is still having 4 weekly immunoglobulin transfusions . Maybe that’s what helped .
can I ask - what’s the tiny secret garden?
Dave and Michelle , I’m always thinking about you and hope that you are having some better days although I am worried about not hearing from you, Dave, in a while
sending love to my special friends ❤️
Hi all
helen reading your post you sound such a different person , very positive and determined and lovely to hear , Dave I hope you are doing ok ? Audrey It sounds like your daughter is doing amazingly well I’m so very proud and happy at what I hear ❤️ my chest is a lot better nothing else to do at the moment 🤞my gvhd is still very painful but the meds help we all have learned to cope in our own way ,
im also intrigued in the tiny secret garden what is it ?
stay strong and take care ❤️
Hello all,
Tiny secret gardens is a Facebook group. I'm also in gvhd upside and gvhd. A few others too if you're interested, let me know.
Dave, it was lovely to see you light up about Alison's horses. It's a good sign she's not around, but a shame particularly for you.
I have a tiny garden, it's a real overgrown cottage garden that has turned into a jungle, but I love it. but it's not without its dangers. My clinic team Dr said I should do things that give me a quality of life. I've had the tick vaccination, but still need lots so I do have to be careful. Your chest worried me Michelleanne because it's so easy to get afungal infectionn in the garden.
I do things like cut my hedge with a pair of hand clippers, but it keeps me out of mischief. Bending down is dodgey with my low blood pressure but I just take it very slowly. I'm sure shouldn't do have the things I do.
The failed trip to Hamburg did me good and I'm now planning to visit hubby at his orthopaedic rehabilitation clinic ... it'll be our sort of 'summer holiday', Ican share his room . Also ill get mobility assistance for the train trip and send case ahead. It's lovely to be able to share this with you. I'll get to see the sea and I miss the sea terribly, grew up in Southampton.
The new second skin plasters 'comfeel+' are good and have made it possible. .. when they've been on for 3 or 4 days I have little pain, I'm just not very mobile and very weak and suffer with my eyes.
Auds, have they told you how long the process will go? I hope they can get it finished soon. I'm afraid I can't imagine what you're going through. it must be tortuous.
it's great about your daughter, i'm so pleased your daughter got through covid so well. Maybe it's the antiviral meds. It was the same for me, and I had it twice. hardly noticed.
I'd better go.
Love to you all.
Hope you're ok Dave.
I'm with you in my thoughts Audrey. Hope you're ok. Can't imagine how you're coping. So pleased about your daughter,
Love ... to all too, hope you're all ok.
Helen
Hello Everyone
I just want to check in and hope that you are all managing to trundle along .
Helen, your last text was so upbeat and I’m really hoping that your mobility and general well being is still on the up. I also hope that you managed the journey to be with your husband and that went well. Hopefully, seeing the sea will have given you a lift!
Michelle, I hope that the pain meds are still helping your gvhd . I know that the fatigue is not great and also hoping that with lots of rest that it is improving a bit.
The weather here is dreadful ! I’ve had a couple of weeks without family as they’ve all been on holiday so hoping that the sun returns next week when my child duties also return.
Dave, we haven’t heard from you in a while, but you are always in our thoughts .
i think we all get pleasure in our gardens and Helen, I joined the tiny garden group !
sending love to all my friends here. ❤️
Hello all,
I often wonder how things are going, with you all...
This is a long one..
Michelleanne, have you got a definitive diagnosis for your chest problem? Or is it getting gradually better? I do really hope that you start to see some improvement, however small, just to give you some hope and motivation... although hope is not my favourite word.. it almost feels cruel.
Audrey, lovely to hear from you... how are you?. I sometimes wonder how you and the family are doing. It sounds quite good... at least it sounds like you're functioning.. so important for the children. Is the court case over, can you draw some sort of line to give you some space?
Dave, I think of you often... remember back to when I'd just got home, crawling up the stairs, eating pot noodles was the best tip you ever gave me. Real gamechanger back then. How are you? I'd love to hear from you?
My trip to Hamburg, ... I can't remember where I left off, the flight was cancelled, at the departure gate. But thankfully I have an emergency helpers whatsapp group and someone picked me up. The wheelchair assistance was good but not much use when the flight's cancelled. An eye-opener.
Maybe it was meant to be cos I did get up there on the train two weeks later nearly 8 hour journey.. Cheap deal on German intercity, and picked up from station. I was exceptionally well organised for the trip.. out of fear...... train toilets... just the thought...(gloves,mask, spray,wipes) , drinks, packed lunch, electrolyte etc. My biggest fear was the air-conditioning breaking down.. that's dangerous for me,... I'm like a slug on a hot pavement... can feel myself shrivelling up in heat.
Anyway, you'd have been proud of me.
Hubby's reha place was really ugly but functional and clean with a wonderful beach. I ate loads , drank plenty of water, and slept well.. The sandy beach was the gamechanger.. wrapping my feet tight with my lymph drainage bandages with my new second skin plasters, and had new shoes, 3 sizes too big-I'm a 6 and these are a 9. but perfect for my huge wrapped up feet and ankles. And I walked on the sand and it felt like someone was scratching my itchy back, but my feet... felt better than a massage. Only painkillers rarely night. It has had a very good impact on my mobility. I now walk every morning for 20 minutes here at home, has to be before 7.30 though, otherwise it's too hot. I still have 3 layers of bandages on my feet, the wounds weap and stink but my Dr said she thinks the wounds look good which is great. One deep wound is closing.
I'm inside all day cos I can't cope with heat or sun, and I garden in the evening on a camping stool before/whilst it's getting dark. I think that's sport too. My friends are all deeply moved and do a double take.. it is amazing. But my son just said he can't bear to see it because the last time I was so good, that within a month I was on my back hardly able to speak. But it's great for now!! Please take my energy for yourselves. .. we're all in phases.. things won't always be like this. We're on our own tortuous journies. But our suffering is giving us magic powers.
I'm getting scleral lenses fitted mid August which will be a challenge over 2 or 3 months, but the Dr said it'll be an improvement.
I won confidence from my visit to the rehab with hubby. It was cheap too thank goodness, in his room even with view of open sea in the distance.
I'm coming back to England next week with family to visit family. Close family isn't close, so it's very whistle stop. I'm looking forward to sitting on a bench with picnic/thermos deciding together who's going to have which crisps, hopefully near the sea.... The joy of banalities is huge. This morning I was for the very first time, grateful to my donor. He gave me a life ... even a life worth living. Even reading this makes me cry a bit (still don't produce tears)
Of course I'm not out of the woods.. had a mole removed Tuesday. Tiny bump in my neck... but I'm going to go anyway.
I need to start live vaccinations mmr et al. soon. And hopefully tapering meds (really frightened of that) There's plenty of negatives if I want to worry.
I think it was a turning point to know I can go to Switzerland if it gets really bad and I can choose it. I don't know if I'm allowed to write that here? It's called veritas I think. Switzerland is only an hour away.
Do you remember all those lovely cuppas we've shared... oh my, you're such a special smashing bunch... you've helped me so very much.
I do hope you know how helpful you all have been on my journey. Sounds strange, but you've made a considerable difference. I can't remember your favourite biscuits or if you like to dunk? 😀
I thank you all with all my heart and send you love and kindness to maybe slightly soften your very hard journeys. I wish I had a magic wand.
Helen
I still check in here now and again.
Hi helen ,
you sound so well , you’ve come so far sounds like you are enjoying life a bit more hope this continues
I’ve being told I have secondary hypogammaglobulinaemia and chronic kidney disease treatment is low dose of antibiotics
Dave I hope you are ok ? Never heard from you in a while ❤️
audrey I hope things are well with you ❤️
I’m thankful every day that I’m still here , and forever grateful to my donor even on bad days 😂
enjoy you’re trip to England stay happy keep safe ❤️
Thanks Michelleanne, sorry to hear that about your chest diagnosis ... but impressed that you're keeping positive some how despite it all... I'm sure you have your ups and downs though. Hoping you can feel a bit of control over it, that the antibiotics can keep it in check a bit.
My initial ' up' after my little holiday is gone, but I'm still in a better place than before....a bit, , but still something.
The heat is extremely challengng. Learning to cope.
Love to all,
Helen
Hello, I’m struggling with a cough and cold and my old gvhd feet… I’m also struggling with a new mobile which I can’t understand. .. and on the back of all that, I’m supposed to be enjoying myself with family in my homeland… first visit for 5 years. Really exhausting, they want to help but I’m feeling stifled, a very understandable dynamic.
I feel stupid saying it.. it’s only a cold.. but my dear brave team, you know how it is.
I do hope they’re sorting you out michelleanne, and that you’re getting support Audrey.. I’m afraid I can’t help at all.. apart from sending my love. … sending lots of it.
love to you all
Helen
Hi Michelleanne, I’ve sent you a direct message.
H x
Morning Helen,
oh dear that’s all you want in you’re holiday
a new phone sounds very frustrating , I suppose you’re family are just trying to help , you’ll be in a routine at home , in my mind I can do all sorts of normal things , I try so hard to do it , but then I struggle with my fatigue and pains in my legs it’s a vicious circle
try and enjoy ❤️
Hey Everyone,
Just thought I would see how everyone is doing. I’m still trying to navigate life without Martin. However, I’m trying to do positive things that would make him proud. I’m holding a motorbike ride on Aug 25th in aid of Anthony Nolan and Cornwall blood bikes. Reading your posts it seems that everyone still has their everyday struggles. Keep fighting and stay strong. Sending love to you all x
Hi beaglegirl
lovely to hear from you , sounds like you are coping very well , Martin would be very proud of you
well done for holding a event for two very worthy charity’s
you carry on being strong
love to you ❤️
Thankyou Michelle I hope he is 🩷 I’m also in the middle of booking my advanced motorbike test so I can can become a volunteer blood biker as it’s something very close to my heart. Hope your well? Xx
Hi beaglegirl
im sure Martin is , he’ll be watching down on you smiling with pride❤️ wow look at how far you have come , that is such a wonderful charity .
im plodding on good days and bad
so very happy for you good luck with your motorbike test ❤️
Hello everyone
I’m sorry that I haven’t been on here for a while . A lot going on!
Helen I’m so sorry that you are feeling under the weather and totally understand that a cold for you is not
simply a cold! I think you’ve done amazingly well to go on holiday and I hope that whether you are still on holiday or home , that you are looking after yourself . Remember to reflect on all the positive things that you have been doing .
Michelle , I am so sorry that you are being blighted with fatigue and painful legs . Although different causes , I can so empathise with these horrible symptoms . Like Helen, you do amazingly well to conquer every day and every challenge that comes your way.
Beagkegirl, it is so wonderful to hear that you have turned your grief with Martin into positive actions . He would be so proud of you as we all are.
Like all of you, life with me hasn’t been so easy with different circumstances. Firstly my good news- my daughter’s final biopsy came back negative and her consultant is delighted with her progress. She’s still having her monthly immunoglobulin infusions but apart from that, leading as normal a life as possible .
The driver who mowed my son down has at last pleaded guilty. This has led to a mixture of emotions . The sentencing will be in the High Court so another ordeal to get through.
my husband is having quite a big op at the beginning of September so more worry.
However, it’s not all gloom and doom as we’re all getting up each morning and wading through the day. This group means such a lot to me and my heart is with you all. ❤️❤️
Hello Audrey, Michelleanne and Alison,
I’ve been out of the loop for a while.
I got the news about our dear Dave passing just before my trip to England. It has really affected me. I don’t think he was that unwell, apparently an embolism. I was relieved at least that he went very quickly. So sad. I think he had a challenging home situation. I miss him. He was one of my first contacts here. I’d got back home from the clinic a few weeks before, we both were on all 4s climbing up stairs so weak. I felt safe with Dave. I’d love to hear from you 3 about him, maybe it’ll help. He introduced me to pot noodles which was a game changer.
one of the reasons I’ve been out of the group for a while is my new phone, I have had difficulty with the app, so it’s good for me to be able to check in again with you. I’ve also had a flare up of the gvhd. Eyes and feet, and general gvhd body/brain. My local gp dr agreed with me yesterday and told me sitting and standing are bad for me, lying and walking are good, but with my bandages and painkillers. She thinks I probably have a hernia too but that doesn’t bother me. I just can’t stand this gvhd.
im sorry to hear you’re struggling too Michelleanne. It’s endless. I hope hubbys op goes ok. It’s not easy when your both incapacitated.
End of July , my hubby got his hip replacement renewed. It went ok. He’s walking fine without sticks. Sometimes I find it hard to believe what’s happened in the last few years. But you all know what I mean. I wish it felt less surreal. I think I was in the clinic too long…it’s affected my sense of time. I hope it comes back.
Audrey, it’s good to hear from you. You certainly do have so much going on.. and you’re still there, thank you, I really appreciate it. Thank you so much for updating us.
Im relieved to hear that the driver has pleaded guilty. It must be a tiny relief in the whole surreal terrible experience for you. Thank you for sharing that with us. I sometimes wonder how you’re doing so that’s helpful.
Im delighted about your daughter. That’s great news, please let her know that we too are proud of her. She reminds me of a chance meeting in the sct clinic about a year ago, he’d had his sct for leukaemia in his 20s and he was about 60, sporty and fit as a fiddle. I’ll never forget him.
My trip to England, my homeland, worked out really well apart from me being ill for the first few days and now paying for it with my flare up. But it did us so much good.
Alison, did you say you bumped into Dave’s sisters at the cemetery? Could you explain, it’s really a veeery small world. It’s wonderful to hear from you.
I’ll be off here, I’ll download the app and see how it goes…
Thinking of you all, look after yourselves,
much love,
Helen
Hello my friends
None of us are on here so regularly but I think we still have a closeness with each other .
i hope that the past week has gone as well as possible for everyone .
Helen, I’m sorry that when you were last on here you were having a bit of a dip. I think that was understandable after your trip to England which will have taken so much energy and then the news about Dave . He was such a kind person and despite all his challenges ( which were many) , he still tried to help us all and always spoke kind words
My daughter now has shingles which she tells me that people who have had blood cancer are more prone to getting. She’s not very well just now with a spiked temp hovering. I always worry so much when this happens . I suppose I’ve got to differentiate between cancer and a weakened immune system . Would you all agree as you are much more knowledgeable than me?
Michelle, I know that you have your everyday struggles but I also admire how you soldier on and never complain. I think that everyone on this site is a warrior and I really hope, Helen and Michelle that you stop and give yourselves a pat on the back occasionally .
we’ve been writing a family impact statement for the courts which has been very hard. Going over the accident while my daughter was fighting for her life , still makes my blood run cold
Anyway, we’re all here and soldiering on every day. Sending hugs and lots of positive vibes x
Hi audrey
sorry to hear about your worries ,I’m not having a good week, hopefully better day tomorrow
you have and are going through so much stay strong ❤️
Hello Audrey, hello Michelleanne, and maybe hello Alison ,
yes Audrey, you’re right, we don’t check in so often, but, like you, this little bit of contact is ‚there‘ even when not active.
Audrey, just a bit of info, at least if only anecdotal… I feel very proud, relieved, grateful… that I’m NOT a cancer patient.. like your daughter… we no longer have leukaemia… but our constant struggle is with our immune system.
Unfortunately, although I’ve been on holiday on and off since the end of July, I’ve been on antibiotics twice, visited 2 doctor's practices abroad and they’ve had to call my home clinic for diagnosis and treatment, I ve had to call my old clinic at night whilst on holiday with a temperature… my poor hubby… it’s not your usual idea of a holiday, but it’s the nearest thing we can get with our compromised immune systems.
im sorry to hear about your daughter’s shingles Audrey. Apparently it’s tortuous pain. I really look forward to getting the vaccination but can’t have any live vaccinations until my body is symptom free of gvhd, which will be a long time. I dread getting it.
Michelleanne, how is your chest/lung gvhd? Can you sleep? Are you mobile? What’s your oxygen saturation? Unfortunately, I’ve had a hacking cough for a few weeks now. It feels loose but might get it checked soon.. my lung function test was clear in June. What do you think Michelleanne? Could it be gvhd lungs?
Audrey, maybe it’s reassuring, maybe not.. but your daughter has age on her side and she will get through this… it’ll probably be a bumpier ride because I’m sure her boys will import bacteria.. can’t be helped. It’s just most important that whatever she gets, she must not get a septic shock. That means, at the slightest temperature, she must get medical advice as to what she should do.
if an infection is stable, then I don’t worry… I’m just frightened of a sepsis, which was why I always have a very clear action plan and wherever I am, if I get a temperature, I start it, take active measures, whenever, wherever.
I hope that helps.
Apart from that I don’t think you need to worry about her. The shingles is something that she has to somehow get through. Oh my… I do feel for her.
I‘ll get off now.
I hope I can access the site more easily now.. I locked myself out of my phone for about a week. But I’m getting more confident with the iOS system now… not an easy shift as a digital Neanderthal er.
love to you both… and maybe Alison too
Helen
Hello Michelle and Helen
i haven’t been on for a while but always thinking about you both.
Michelle, I hope that the gvhd is backing off a bit and the fatigue is not as bad as it was a few weeks ago. I know how challenging every day is and I also know how both yourself and Helen, bravely move forward .
Helen, thank you for all the advice re my daughter . The shingles is getting her down a bit as the dreadful itching is stopping her from sleeping. However , like my warrior friends here, she’s plodding on.
Helen- how is your cough? Have you had it checked out. It’s bad enough for the healthy person to put up with all the coughs , colds etc but I know how much more difficult it is for you to navigate your way through / round these setbacks .
Anyway, I’m sending you both love and hope that you can enjoy the changing colours into autumn. ❤️❤️
Hi audrey
were all struggling in our own way ,I’m trying now to get my had round now that I was a cancer patient , and that I am a survivor just like you both it’s hard when my mind wonders back
my gvhd is manageable but sore
I really hope you don’t get many setbacks now the winter is coming round ,
audrey I hope your daughter gets some ease from her shingles and she gets on a even keel
Helen I hope you are coping and doing ok
stay strong ❤️
Hi Michelle and Helen
im hoping that this week is going not too badly for you both .
we are definitely into autumn and the leaves are tumbling down here. Beautiful colours to lift our spirits .
you are both definitely survivors and don’t have cancer, just like my daughter. I know that the effects of all your treatment and a weakened immune system , makes life challenging and I’m in awe of how you plough on, taking each day as it comes .
my daughter’s shingles is very painful . Her gp says that it’s a bad dose and because of everything that she’s been through, this will be making it worse! However , like you two strong ladies, she’s battling through. We’re actually going to the theatre on Saturday - a mother and daughter treat . This was so difficult to imagine even a year ago!
Always thinking about you both and sending hugs . 🤗