I think the doctor in the rota at the moment is unfortunately quite challenged by his work and not very present because he doesn't feel very confident. I was just lucky he wasn't there.
I've heard too often from other doctors " oh , I don't know what has happened there, we'll have to get that checked.. or I don't understand what's happened there." And he himself just overlooks things. My hubby was good though and told me to relax about it... cos I was getting a bit angry about him. He's only one in a team. But it does all feel arbitrary until I get active myself or another doctor notices something.
Oh well, .. I'm still here. And positivity is the thing that'll keep me here. And at this very moment I feel positive.. quite often for an hour in the morning... really nice though..
How did the deep massage go Dave?
How's your chest Michelleanne? Is it gvhd lungs? Alison, are you managing to get yourself out of the door? Are you able to find help with the animals etc? Audrey, is your daughter at home? How are your grandchildren doing? Do they have supportive teachers?
I'm sorry that I haven’t been around for a wee while but glad to be chatting now
Helen, I was really pleased to hear that you managed to get back on the ecp and hope that it is helping though I know that it is early days . You all have to develop so much patience along with everything else that is part of your illness. Its also so good to hear that you are remaining positive as this can be hard when you’re lives have been so dramatically changed .
Dave, I hope that the massages are helping and that you are having some better hours in the day.
my daughter’s latest biopsy came back negative which is a great relief. Unfortunately , she seems to be picking up one cold after the other and her cough is quite worrying. Her consultant is going to contact respiratory to see if she needs any further treatment or investigations . I know that Helen and Michelle have had / have respiratory issues and wonder if you can reassure me in any way.
Alison, I was kindly given a book by my neighbour called “ I Promise It Won’t always Hurt like This “ by Clare Mackintosh. It might be worth a read as some parts might help .
Anyway, all my friends, please know that I constantly think about you all and im hoping that spring will bring some positivity with your physical and emotional health. .❤️
my chest is the same they don’t know what it is ,my ct scan has shown no signs of bronchitis , but still shortness of breath I’ve crusty kidneys and scar tissue , I have another app in may so see what he says then
just maybe it’s part of this treatment and all the radio therapy I have had in the past
I've been thinking about your daughter Audrey, .. and all the infections she's picked up. I suppose because since January I've had so much ... the rsv virus, bladder infection, acute gastroenteritis, and I'm realising just how very vulnerable we are to infections and the enormous impact they have on us... I even thought I might be getting dementia, but now I'm stronger again, I realise it was just stress. . I think it's just the 'new normal' and I can only take precautionary measures, which are no guarantee. The chest thing of your daughter must be worrying Audrey. I hope they can distinguish between an infection or gvhd lung, at least they can address it then, or at least try to.
Michelleanne, my experience of sharing my hospital room with other patients over the years has shown me how debilitating lung problems are. As a rule they seem to be struggling the most, working, struggling for every breath... it makes people really grouchy. So I'm sending you particularly lots of our loving kindness to help you just get through each minute. Is breathing hard work? Hopefully not each breath but generally? It must be exhausting.
Dave, what do you think about me trying to make a video of my foot skin care practices to share? Now I've got energy again I can think and I get ideas. Feels good.
Alison, please try to touch base with us just to give us a sign of life. It'd be helpful to hear from you, regardless of how you're doing. We're here.
I'd better get off here. It's been good to have a bit of quiet here... we need that too.
i think our bodies have gone through so much , we just have to do what we can when we can , hope you have more positive days
my ct scan has come back not showing bronchitis , I’m always breathless don’t know if it’s scar tissue or not I had 2 rounds of conditioning chemo before I had my bmt so it could be that , see what they say at my next app
I thought I would come and see what is happening. I’m still struggling to cope but I have managed to get out and do my horses! I also surprised my dad with a new jeep as Martin always said he deserves something as he does so much for me. I bought it on Friday and pretended it was a customer of mine who had broken down. He kept looking at it saying how lively it was. I made out I was on the phone and said “okay I’ll get dad to try it again for you” at this point I gave dad the keys and he started it up and he asked me what was wrong with it. I had written a quick note that I left in the dash and asked him to read it out. Whilst my brother was reading it he read it out and it said “this Navarre pickup belongs to me” he laughed and then I burst in to tears and said no it is yours Martin wanted you to have it. He broke down and I actually hugged my dad for the very first time 💔 I just hope Mart is proud of me. I was worried about posting here again as everyone I click in the AN page it says saving the lives of people with Blood cancer. All the time I use to read this I kept thinking keep going Mart your doing this. Now it breaks my heart to know because of an infection or has ruined my life aswell as taking my soulmates from him. I’m so sorry for being so doom
and gloom as you all are going through so much **** that no one deserves! I also had some rubbish news that the lady that was supporting me through this shitstorm has lost her partner on Sunday 💔life is ****., however, Im so glad to be part of this little community as you all are such wonderful kind souls. I hope you all are doing well I’m sending love to you all! PS Dave I hope your mum is okay? Xx
so good to hear from you and know you are sort of doing ok. Unfortunately I am still struggling hoping this new drug may kick in soon to help loosen my skin so maybe I can start to try and walk again. I keep hoping but nothing happening.
lively gesture getting the keep for your dad and good you remade the bond with him. I bet you both felt good about each other after the hug.
My mum was in Treliske for a time as she started to get seizures due to having both alziemers and dimensions at the same time after a brain bleed I believe. She has now been moved to a care home in Truro to get a proper Assesment of her by nurses. She is up and down like a yo-yo thou. She can hardly hold a conversation on the phone usually only about 5 mins max. My sister and carer visit her every day as my mum really does not want to be there, and the doctors insist it is only for evaluation to get her Greg’s right and decide the care she needs.
I have thought about you several times over the past few weeks wondering if you went to a recent hog roast I saw advertised at the crown , and also if you had been to Lostwithiel lately after the house wall collapsed opposite the church and the street had to be closed for some time.
It is also so good you have spent some with the horses, it must be a bit more uplifting for you now that spring is coming closer.
My condolences to your friend as well. You can be there for each other as you are both still going through a hard time. Please continue to come here and keep in touch. We are still all struggling in our own way even though we have not been so active.
Forgot to say that Martin would have been so proud of you for the way you are coping and thinking of your dad like that and remaking the bond between you both. I think we are all proud of you.
soory haven’t been on in a while. As normal I hve been suffering as no progress made and have been a bit concerned about my mother, and I am not sure if my leg is flaring again with gvhd as is starting to scab and peel again. Helen I am currently trying the cream you recommended dexeryl as it looks very much like one I was using previously ie a paraffin based one as it holds in moisture longer. With regard to massages I have not been having any as I used a vibromassager and I think I felt worse after so I stopped. Luckily I have bought myself down to 1mg prendisolone and hoping to stop altogether in a week or so as I am storeroom refactors so there is no point me continuing and they do so much damage.
helen I hope your ankles / feet are improving as I know it has now been a long time now. Michelle like Helen I hope you do not have gvhd of the lungs as I believe it can go often for a long time, I suppose that is the same as all gvhd issues.
Audrey I hope your daughter is still continuing to improve but I guess for her it will always be a battle with the kids coming home with colds and viruses.
Hello everyone and lovely that you have all been back in our wee group and as always, supporting and helping each other .
You are all going through so much and everyone of you is facing your daily challenges with so much courage.
Dave, I’m really sorry that you are still struggling so much and have the additional worry of your mum. I don’t know enough about your condition to comment constructively but please remember just how much you’ve gone through and try to stay positive . We’re all here for you and are all sending positive vibes that things become a bit easier soon.
Michelle, I really hope that you get the venesection at your next appointment and that it makes a difference . I feel for you with your tight chest, breathlessness and cough as this is also what my daughter is dealing with. Really hope that some milder weather will help.
Helen, I’m keeping my fingers crossed that you had your first ecp and that very soon you will notice an improvement with it. You seem quite upbeat which is great as I think positivity can help in a lot of ways although sometimes it can be difficult to muster it up. It’s so good to hear that your energy levels are rising too.
Beaglegirl, I’m so glad that you are back with us and that you have been working with the horses . I’m sure that if nothing else, they will be a great distraction from your thoughts . Such a kind gesture to your dad and getting closer to him will hopefully help you too. Martin would be very proud of you.
And so my dear friends , thank you all for always being here for me too. In another way, life is hard for myself and being able to chat to all of you really helps .
pleased to hear from you all , we all have our struggles in all different ways , I wish you all peace ,happiness and positivity stay strong and remember we never walk alone ❤️
Lovely to hear from you all... . We can't always be on the ball here...we actually need to get on with life too:). I gave myself a mobile phone ban recently... I can spend too much time on it. It did me good.
I was delighted to hear about the jeep and your Dad Alison. It pulled my heart strings. Wonderful way to do it too. Martin's energies , your wonderful relationship, is very strong and I'm pleased you're feeling supported by him. When I read how you're doing, I wish it for my hubby, when I go. None of us know how long we've got, but still, I... we're really proud of you. Clearly you're still at the beginning of a difficult journey, but you're trusting yourself, which is the main thing. It's also lovely that you feel comfort from the group. A warming energy ... better than a cuppa:)
Audrey, I wonder how you're daughter's doing, and the children? More to the point I wonder how you're doing yourself? In the face of such an endless pile of struggles, you've got such a kind way... you amaze me, I feel such a special kindness in you. Thank you so very much for your endless compassion and empathy. I hope you this kind to yourself.
Michelleanne, I do hope you're not working at every breath. Do you have an oxygen cylinder at home? That might be good to give you a bit of relief, but I guess delivery is complicated.
Dave, I get the feeling you're moving on, experimenting and trying to accept. I don't know how or why I think it. Do you feel it at all? You've inspired me a bit, I'm going to try out cling film... I think it's food wrap in the US. Might try it tonight, lather on my emollient and then wrap in cling film for the night... hopefully it'll soften the skin on my feet whilst my feet are up... I have my mattress up. I'll keep you posted.
My children are coming later today for Easter, from Munich on the coach which I'mreally lookingforwardto. One thing on my mind though, is that I find it hard when they all talk German together fast, especially when I'm in pain in the evening and tired... I just can't follow... but I've talked about it with them, they are aware and understand. Not easy with two languages... I worry if I ever have to go into care, in German.
Anyway , I'm whittling on now, I'm sure I've forgotten something, but trust our little group to ask me if you don't understand.
My ECP (once since 20th January) was super. My daughter said jokingly the day after, .. if you had it every day mum, you could run a marathon! But unfortunately it's related to attitude , not physical improvement... it makes me feel normal inside. And I move much better, lighter.
Now I really should get off... much love to you all, I'll keep you with me in my pocket for when I'm feeling challenged. ... and maybe AN look into our group sometimes, Liam? ... thank you, if you read this. Thank Anthony's mum from us.
Good to hear from you. Physically I have not moved on , mentally a bit I may have. If your skin feels looser after Ecp then Ecp is working. That is your excuse to doctor and overtime it will get better. I would also be careful with cling film as really your skin needs to breathe as well otherwise they would make plasters out of cling film or plastic. Also I had read from recoverers on another forum where they had weepy wounds that scabbed and then later seeped again and scabbed they said it was quite normal for them a few times and this was the scleroderma going and the skin became softer each time this happened and eventually it went away. My leg recently started weeping again and then scabbed up a second time and largish flakes of skin one off so I think I am on your journey. I think the leakage is lymph due to its composition.
Anyway all happy Easter and enjoy being with your families those who are.
That's so nice that you checked in Dave. I've been on a real downer tonight, but am gradually finding my way to a place of calm. It's so horrible this. It makes me feel sooo isolated... it's horrible. But I can't go back down the slope... I'll get off and try to do something sensible. Distraction.
Thanks again. Thankfully you know just what a nightmare it is. Thanks for being there Dave. X
when on FB front page click on symbol in top right corner a round circle wit squiggle in it. I unfortunately am currently like you on a bit of a downer and really low. Don’t want to move as is always so painful on my legs. Until my skin loosens up I feel a prisoner to my bed and chair. Luckily with the issues we have people do seem to improve from relying on walkers and wheelchairs so I still have some hope. What gets me is you can go so long stuck in stalemate where I seem to have been for last couple of years with the tight skin on my legs and my fascia. I feel it is never going to budge. I used to go out walking before a lot and I want to do that again. I don’t want to plan for places to go as I have done that too often and I keep letting myself down as I don’t seem to make any progress. Again I expect this is me being impatient. I sometimes find it difficult to find distraction as what I would do in past for distraction I cannot do now. I have always been a practical person more than literate and love being out and about. I am currently reducing my steroids down and am on 1mg and I don’t think that helps either as it can lead to mood swings and depression due to low dopamine. Trying to finish with steroids comll ok etely in next seven days if I can and hopefully that may make a difference to my mood a bit and maybe also my muscle weakness a bit although my reduced Rom due to fascia related gvhd has kept my muscle tone down the most. We are all in this together, trying to last and get through this horrible disease. Using these forums to talk about it does help even though you see some not very good outcomes sometimes, but they make you feel you are not alone and thier is hope, but at the same time you also realise it is not an easy ride. We all need an escape from our situation now and again and currently mine is when I can sleep if I ever sleep as I find it so difficult since gvhd as muscle twitches, tight skin, cramps and wanting to go to the toilet so frequently keep me awake most of the night. If my fascia issues would resolve a bit I know some of my issues would also resolve as well.
as I said before be careful putting film over your wounds to keep them moist, unless the wound if leaking is not exposed to air it will not dry so will not scab and heal. However if it is a deep wound you don’t want the wound to heal on the surface as it may leave a whole below in which case if your wound is like that it needs to be packed with seaweed or honey for it to heal slowly from inside to out and to only scab over when the hole below is filled in. I know this from on one occasion having a pilonoidal sinus, and on my most treatment I had which was a pressure sore the size of a ping pong ball that took over a year to heal due to being bed bound in hospital for too long and not being able to turn myself in bed due to no muscle strength.
Anyway I hope you can find the links I sent and I bid goodnight as I need to get my sleep soon and escape from my mind and thoughts.
Hi Dave, I've checked out your message with photos.. it's something from Whit Davies. Is that right? There's something else from you but I cant open it.
In the light ... or darkness of my downer last night... I checked out 'side effects' from my recent antibiotic and was 'relieved' to read ... depression and anxiety... so my low spell had a reason. And also my forgetfulness was probably from the anxiety/confusion, also side effects.
Dave, I read that your cortisone is messing up your mood too... I feel for you. It's really scary. We're here, please remember. I'm here.
Alison how are your eyes as I know you said you still had issues and we’re going back to treliske for another consultation. I hope you and your friend are managing to support each other though this traumatic time for you both. Hopefully the dogs and horses are also keeping you entertained. Have you managed to go any practise jumps at home or any hacks?
Audrey I hope you are well and life is getting a bit easier after the year you have had. I hope your daughter is gradually improving and the viruses and colds are getting less as the weather starts to warm.
Michelle. I hope they have got to the bottom of your coughing / breathing issue and I hope it is not lung gvhd. Also hope you have started venesection to get rid of your excess iron and hopefully that will also improve things for you.
Helen,
hope your Ecp is going well again and you are now feeling some improvement and maybe some better mobility. I guess you must be improving a little as a know a while ago you said you stopped driving due to immobility but noticed somewhere you posted you were driving again.
i yesterday had a bad Ecp session that stressed me the cells I had removed yesterday to be treated by the process had to be thrown away as they could not be returned to me as my blood was just continueally clotting the canula, needle, tubes and eventually just turned the collected blood cells to like jelly and it was just too thick and dangerous to return so was a bit of a waste of treatment. It is so long I have been in the state I am in and having all this treatment to try and improve and when it fails it makes it even worse. Anyway just wanted to touch base and let you know I was thinking of you all and let you know I am still here. Getting used to the clock change and enjoying looking at the daffodils telling us spring is here even though it is continually raining at the moment. Al least we should get lovely green grass this year,
so sorry you are feeling so low and things are getting you further down as all is not working out as planned. Don’t be too impatient about the tattoo I know you want to get it done to go or and remember Martin, hopefully a few days or so your artist will be able to do it. If not you should be able to find another.
You should be able to visit Martin whenever you want as that is your right. The women’s group should be accommodating and helping you to do this. I guess he is in the graveyard. If you get issues with them have a chat with the vicar he may be able to resolve the issue. Unfortunately drinking does not resolve the issues it usually makes issues worse and makes a person more miserable. A glass of wine now and again is not to bad to relax but excessive drinking will make you feel worse and may give you health issues. I now haven’t drunk anything for probably at least four years and I think I feel better for it even though at the moment I suffer heavily from depression, anxiety etc and often I could do with it. I am sure once my gvhd goes then with a little time so will my anxiety and depression. You have been down a hard road so you will feel depressed and lonely and afraid and upset so it is very difficult to get away from this and often improvements only come over time. I am sure Martin would not really like you drinking the way it sounds you are, he would want you to snap out of it for your sake.
your purpose now is to live again for you both , Martin would have wanted you to carry on the way you both enjoyed spending time together. Spending time with horses, jumping, going to new places, trying new foods, maybe try cooking new recipes or foods. I am also Martin would not mind you doing this with a friend as he would want to see a smile on your face as I am also sure he loved you more when you had a smile on your face.
What a kind message Dave, I agree. He's right Alison. I would try not to have the drink in the house... as soon as it's a decision.."do I or don't I", we're lost. I think lots of us have had phases in our lives where addiction has been a potential problem. Don't go down that road, it goes nowhere. You're in such a challenging phase and self medication (as it's sometimes called) just isn't a solution. It's terribly hard, but you'll get there, with Martin's love guiding you.
Dave, your ECP thing is scary, but I've had the same. With me it's my 3x high thrombozyt value and my blood coagulates and bungs up the machine. Some weeks are worse and the machine stops every 10, 20 minutes. They gave up one time. I always ask about my thrombo values but they always say it's nothing alarming. I think I'm also at risk of a stroke from it. But I take Aspirin protect.
Unfortunately I took a peek on google, never a good idea, and it says it's to do with bone marrow. But if my team are fine, I am too. Relax about the ECP, it's just distressing.
I'll get off, love to you all, Michelleanne thinking of you too. Best of luck.
Hello everyone . You all are struggling so much and yet how you all try to boost each other up and always have kind words to say.
I can’t get involved too much in your symptom chat as I have not gone through it . I do however, think that the “ health and wellbeing “ chat is good for us all to participate in and encourage each other in whatever way we can.
My heart is always with you all. I can understand that it must be difficult to relax even when things are going better as I always worry about my daughter . Thank you all for asking about her . She is going to have ongoing problems with her chest but on the whole she seems to be doing well . She has actually now got a job! I was worried that it was too soon but I can see that she needed it to feel more like her former self . I hope she can cope with it . It’s mostly working from home which of course keeps her safer from infection etc .
Anyway, I hope that this will be encouraging for others None of us, even the most healthy , knows what is round the next corner so keep ploughing on , being the kind , compassionate people that you all are . Sending love ❤️
That's terrific news Audrey, she's young, she going to get this, beat it. Your news is inspiring, thank you so much. It's not easy to share things here that are soo good because we're struggling so much. You've really cheered me up! How wonderful for her children.... and of course you... and your daughter... and all... and our little group.
Thank you so much, Helen . It’s so good that she’s doing well at the moment . I tell her about my friends here and how you are all struggling in different ways. I also tell her how strong in character you all are and so supportive to each other and to me . She doesn’t know you all and yet she’s in awe of everyone here .
patients and family can never fully relax and my daughter and I never take anything for granted
We’re all on a roller coaster journey in different ways and we will all have up times as well as the struggles. X
That's nice. I bet she's pleased you've found support here.."in your pocket". I think of her sometimes... she has two boys right? In my head they're about 6 and 8. Funny how we just fill in the dots.
I tell hubby about you all too. It certainly helps him to know you're with me. He feels sooo overwhelmed by it all so often, and wth this sense of "normality" from you all, I can reassure him it's par for the course. So hard to believe.
I saw my GP today. I was a bit worried about being forgetful and anxious and very low recently. I also find it difficult with the language, as you know.
She was great. Really took time. I thought I might need a check up with a neurologist, but she said, she doesn't have another patient who's been as ill as me and that it's to be expected and that I just need to be kind to myself and try not to be frightened of being depressed or forgetful but be accepting of myself in a kind way and not to have high expectations.
I came home with an action plan which she worked through with me and I have to see my therapist.
It was really kind of her. At the same time, it's awful. I feel like I'm waiting to die quite often.
Comments
Thanks Michelleanne, definitely.
I think the doctor in the rota at the moment is unfortunately quite challenged by his work and not very present because he doesn't feel very confident. I was just lucky he wasn't there.
I've heard too often from other doctors " oh , I don't know what has happened there, we'll have to get that checked.. or I don't understand what's happened there." And he himself just overlooks things. My hubby was good though and told me to relax about it... cos I was getting a bit angry about him. He's only one in a team. But it does all feel arbitrary until I get active myself or another doctor notices something.
Oh well, .. I'm still here. And positivity is the thing that'll keep me here. And at this very moment I feel positive.. quite often for an hour in the morning... really nice though..
How did the deep massage go Dave?
How's your chest Michelleanne? Is it gvhd lungs? Alison, are you managing to get yourself out of the door? Are you able to find help with the animals etc? Audrey, is your daughter at home? How are your grandchildren doing? Do they have supportive teachers?
Much love to you all,
Helen
Hi Everyone
I'm sorry that I haven’t been around for a wee while but glad to be chatting now
Helen, I was really pleased to hear that you managed to get back on the ecp and hope that it is helping though I know that it is early days . You all have to develop so much patience along with everything else that is part of your illness. Its also so good to hear that you are remaining positive as this can be hard when you’re lives have been so dramatically changed .
Dave, I hope that the massages are helping and that you are having some better hours in the day.
my daughter’s latest biopsy came back negative which is a great relief. Unfortunately , she seems to be picking up one cold after the other and her cough is quite worrying. Her consultant is going to contact respiratory to see if she needs any further treatment or investigations . I know that Helen and Michelle have had / have respiratory issues and wonder if you can reassure me in any way.
Alison, I was kindly given a book by my neighbour called “ I Promise It Won’t always Hurt like This “ by Clare Mackintosh. It might be worth a read as some parts might help .
Anyway, all my friends, please know that I constantly think about you all and im hoping that spring will bring some positivity with your physical and emotional health. .❤️
Hi helen
pleased you feel positive every little helps
my chest is the same they don’t know what it is ,my ct scan has shown no signs of bronchitis , but still shortness of breath I’ve crusty kidneys and scar tissue , I have another app in may so see what he says then
just maybe it’s part of this treatment and all the radio therapy I have had in the past
just keep up the good fight ❤️
I'm off in the morning to my first ecp since january. Unfortunately I'm on antibiotics for a bladder infection, so I hope I'm allowed it.
Have a peaceful week all of you, only nice surprises.
Sorry, this is just a quicky, no time to read through your posts ... hope you're all stable.
Love to you all,
Helen
Hello Audrey, Michelleanne, Dave, Alison,
I've been thinking about your daughter Audrey, .. and all the infections she's picked up. I suppose because since January I've had so much ... the rsv virus, bladder infection, acute gastroenteritis, and I'm realising just how very vulnerable we are to infections and the enormous impact they have on us... I even thought I might be getting dementia, but now I'm stronger again, I realise it was just stress. . I think it's just the 'new normal' and I can only take precautionary measures, which are no guarantee. The chest thing of your daughter must be worrying Audrey. I hope they can distinguish between an infection or gvhd lung, at least they can address it then, or at least try to.
Michelleanne, my experience of sharing my hospital room with other patients over the years has shown me how debilitating lung problems are. As a rule they seem to be struggling the most, working, struggling for every breath... it makes people really grouchy. So I'm sending you particularly lots of our loving kindness to help you just get through each minute. Is breathing hard work? Hopefully not each breath but generally? It must be exhausting.
Dave, what do you think about me trying to make a video of my foot skin care practices to share? Now I've got energy again I can think and I get ideas. Feels good.
Alison, please try to touch base with us just to give us a sign of life. It'd be helpful to hear from you, regardless of how you're doing. We're here.
I'd better get off here. It's been good to have a bit of quiet here... we need that too.
Love to you all,
Helen
Hi helen
i think our bodies have gone through so much , we just have to do what we can when we can , hope you have more positive days
my ct scan has come back not showing bronchitis , I’m always breathless don’t know if it’s scar tissue or not I had 2 rounds of conditioning chemo before I had my bmt so it could be that , see what they say at my next app
love to you all
I hope it's not cgvhd lungs.. but you'll beat that too if it is. I hope they can find a diagnosis soon. It's horrible not knowing.
Sleep well and love to you Michelleanne, night night all,
Helen
Hi Helen, Dave, Audrey & MichelleAnne,
I thought I would come and see what is happening. I’m still struggling to cope but I have managed to get out and do my horses! I also surprised my dad with a new jeep as Martin always said he deserves something as he does so much for me. I bought it on Friday and pretended it was a customer of mine who had broken down. He kept looking at it saying how lively it was. I made out I was on the phone and said “okay I’ll get dad to try it again for you” at this point I gave dad the keys and he started it up and he asked me what was wrong with it. I had written a quick note that I left in the dash and asked him to read it out. Whilst my brother was reading it he read it out and it said “this Navarre pickup belongs to me” he laughed and then I burst in to tears and said no it is yours Martin wanted you to have it. He broke down and I actually hugged my dad for the very first time 💔 I just hope Mart is proud of me. I was worried about posting here again as everyone I click in the AN page it says saving the lives of people with Blood cancer. All the time I use to read this I kept thinking keep going Mart your doing this. Now it breaks my heart to know because of an infection or has ruined my life aswell as taking my soulmates from him. I’m so sorry for being so doom
and gloom as you all are going through so much **** that no one deserves! I also had some rubbish news that the lady that was supporting me through this shitstorm has lost her partner on Sunday 💔life is ****., however, Im so glad to be part of this little community as you all are such wonderful kind souls. I hope you all are doing well I’m sending love to you all! PS Dave I hope your mum is okay? Xx
Hi Alison,
so good to hear from you and know you are sort of doing ok. Unfortunately I am still struggling hoping this new drug may kick in soon to help loosen my skin so maybe I can start to try and walk again. I keep hoping but nothing happening.
lively gesture getting the keep for your dad and good you remade the bond with him. I bet you both felt good about each other after the hug.
My mum was in Treliske for a time as she started to get seizures due to having both alziemers and dimensions at the same time after a brain bleed I believe. She has now been moved to a care home in Truro to get a proper Assesment of her by nurses. She is up and down like a yo-yo thou. She can hardly hold a conversation on the phone usually only about 5 mins max. My sister and carer visit her every day as my mum really does not want to be there, and the doctors insist it is only for evaluation to get her Greg’s right and decide the care she needs.
I have thought about you several times over the past few weeks wondering if you went to a recent hog roast I saw advertised at the crown , and also if you had been to Lostwithiel lately after the house wall collapsed opposite the church and the street had to be closed for some time.
It is also so good you have spent some with the horses, it must be a bit more uplifting for you now that spring is coming closer.
My condolences to your friend as well. You can be there for each other as you are both still going through a hard time. Please continue to come here and keep in touch. We are still all struggling in our own way even though we have not been so active.
Alison,
Forgot to say that Martin would have been so proud of you for the way you are coping and thinking of your dad like that and remaking the bond between you both. I think we are all proud of you.
Hi Michelle, Audrey, Helen, Alison
soory haven’t been on in a while. As normal I hve been suffering as no progress made and have been a bit concerned about my mother, and I am not sure if my leg is flaring again with gvhd as is starting to scab and peel again. Helen I am currently trying the cream you recommended dexeryl as it looks very much like one I was using previously ie a paraffin based one as it holds in moisture longer. With regard to massages I have not been having any as I used a vibromassager and I think I felt worse after so I stopped. Luckily I have bought myself down to 1mg prendisolone and hoping to stop altogether in a week or so as I am storeroom refactors so there is no point me continuing and they do so much damage.
helen I hope your ankles / feet are improving as I know it has now been a long time now. Michelle like Helen I hope you do not have gvhd of the lungs as I believe it can go often for a long time, I suppose that is the same as all gvhd issues.
Audrey I hope your daughter is still continuing to improve but I guess for her it will always be a battle with the kids coming home with colds and viruses.
Hello everyone and lovely that you have all been back in our wee group and as always, supporting and helping each other .
You are all going through so much and everyone of you is facing your daily challenges with so much courage.
Dave, I’m really sorry that you are still struggling so much and have the additional worry of your mum. I don’t know enough about your condition to comment constructively but please remember just how much you’ve gone through and try to stay positive . We’re all here for you and are all sending positive vibes that things become a bit easier soon.
Michelle, I really hope that you get the venesection at your next appointment and that it makes a difference . I feel for you with your tight chest, breathlessness and cough as this is also what my daughter is dealing with. Really hope that some milder weather will help.
Helen, I’m keeping my fingers crossed that you had your first ecp and that very soon you will notice an improvement with it. You seem quite upbeat which is great as I think positivity can help in a lot of ways although sometimes it can be difficult to muster it up. It’s so good to hear that your energy levels are rising too.
Beaglegirl, I’m so glad that you are back with us and that you have been working with the horses . I’m sure that if nothing else, they will be a great distraction from your thoughts . Such a kind gesture to your dad and getting closer to him will hopefully help you too. Martin would be very proud of you.
And so my dear friends , thank you all for always being here for me too. In another way, life is hard for myself and being able to chat to all of you really helps .
Hi all
pleased to hear from you all , we all have our struggles in all different ways , I wish you all peace ,happiness and positivity stay strong and remember we never walk alone ❤️
Hello you lovely bunch,
Happy.. at least peaceful Easter.
Lovely to hear from you all... . We can't always be on the ball here...we actually need to get on with life too:). I gave myself a mobile phone ban recently... I can spend too much time on it. It did me good.
I was delighted to hear about the jeep and your Dad Alison. It pulled my heart strings. Wonderful way to do it too. Martin's energies , your wonderful relationship, is very strong and I'm pleased you're feeling supported by him. When I read how you're doing, I wish it for my hubby, when I go. None of us know how long we've got, but still, I... we're really proud of you. Clearly you're still at the beginning of a difficult journey, but you're trusting yourself, which is the main thing. It's also lovely that you feel comfort from the group. A warming energy ... better than a cuppa:)
Audrey, I wonder how you're daughter's doing, and the children? More to the point I wonder how you're doing yourself? In the face of such an endless pile of struggles, you've got such a kind way... you amaze me, I feel such a special kindness in you. Thank you so very much for your endless compassion and empathy. I hope you this kind to yourself.
Michelleanne, I do hope you're not working at every breath. Do you have an oxygen cylinder at home? That might be good to give you a bit of relief, but I guess delivery is complicated.
Dave, I get the feeling you're moving on, experimenting and trying to accept. I don't know how or why I think it. Do you feel it at all? You've inspired me a bit, I'm going to try out cling film... I think it's food wrap in the US. Might try it tonight, lather on my emollient and then wrap in cling film for the night... hopefully it'll soften the skin on my feet whilst my feet are up... I have my mattress up. I'll keep you posted.
My children are coming later today for Easter, from Munich on the coach which I'mreally lookingforwardto. One thing on my mind though, is that I find it hard when they all talk German together fast, especially when I'm in pain in the evening and tired... I just can't follow... but I've talked about it with them, they are aware and understand. Not easy with two languages... I worry if I ever have to go into care, in German.
Anyway , I'm whittling on now, I'm sure I've forgotten something, but trust our little group to ask me if you don't understand.
My ECP (once since 20th January) was super. My daughter said jokingly the day after, .. if you had it every day mum, you could run a marathon! But unfortunately it's related to attitude , not physical improvement... it makes me feel normal inside. And I move much better, lighter.
Now I really should get off... much love to you all, I'll keep you with me in my pocket for when I'm feeling challenged. ... and maybe AN look into our group sometimes, Liam? ... thank you, if you read this. Thank Anthony's mum from us.
Helen
Hi Helen,
Good to hear from you. Physically I have not moved on , mentally a bit I may have. If your skin feels looser after Ecp then Ecp is working. That is your excuse to doctor and overtime it will get better. I would also be careful with cling film as really your skin needs to breathe as well otherwise they would make plasters out of cling film or plastic. Also I had read from recoverers on another forum where they had weepy wounds that scabbed and then later seeped again and scabbed they said it was quite normal for them a few times and this was the scleroderma going and the skin became softer each time this happened and eventually it went away. My leg recently started weeping again and then scabbed up a second time and largish flakes of skin one off so I think I am on your journey. I think the leakage is lymph due to its composition.
Anyway all happy Easter and enjoy being with your families those who are.
Happy Easter
That's so nice that you checked in Dave. I've been on a real downer tonight, but am gradually finding my way to a place of calm. It's so horrible this. It makes me feel sooo isolated... it's horrible. But I can't go back down the slope... I'll get off and try to do something sensible. Distraction.
Thanks again. Thankfully you know just what a nightmare it is. Thanks for being there Dave. X
Maybe you messaged me on fb, but I can't find it.
Hi Helen,
when on FB front page click on symbol in top right corner a round circle wit squiggle in it. I unfortunately am currently like you on a bit of a downer and really low. Don’t want to move as is always so painful on my legs. Until my skin loosens up I feel a prisoner to my bed and chair. Luckily with the issues we have people do seem to improve from relying on walkers and wheelchairs so I still have some hope. What gets me is you can go so long stuck in stalemate where I seem to have been for last couple of years with the tight skin on my legs and my fascia. I feel it is never going to budge. I used to go out walking before a lot and I want to do that again. I don’t want to plan for places to go as I have done that too often and I keep letting myself down as I don’t seem to make any progress. Again I expect this is me being impatient. I sometimes find it difficult to find distraction as what I would do in past for distraction I cannot do now. I have always been a practical person more than literate and love being out and about. I am currently reducing my steroids down and am on 1mg and I don’t think that helps either as it can lead to mood swings and depression due to low dopamine. Trying to finish with steroids comll ok etely in next seven days if I can and hopefully that may make a difference to my mood a bit and maybe also my muscle weakness a bit although my reduced Rom due to fascia related gvhd has kept my muscle tone down the most. We are all in this together, trying to last and get through this horrible disease. Using these forums to talk about it does help even though you see some not very good outcomes sometimes, but they make you feel you are not alone and thier is hope, but at the same time you also realise it is not an easy ride. We all need an escape from our situation now and again and currently mine is when I can sleep if I ever sleep as I find it so difficult since gvhd as muscle twitches, tight skin, cramps and wanting to go to the toilet so frequently keep me awake most of the night. If my fascia issues would resolve a bit I know some of my issues would also resolve as well.
as I said before be careful putting film over your wounds to keep them moist, unless the wound if leaking is not exposed to air it will not dry so will not scab and heal. However if it is a deep wound you don’t want the wound to heal on the surface as it may leave a whole below in which case if your wound is like that it needs to be packed with seaweed or honey for it to heal slowly from inside to out and to only scab over when the hole below is filled in. I know this from on one occasion having a pilonoidal sinus, and on my most treatment I had which was a pressure sore the size of a ping pong ball that took over a year to heal due to being bed bound in hospital for too long and not being able to turn myself in bed due to no muscle strength.
Anyway I hope you can find the links I sent and I bid goodnight as I need to get my sleep soon and escape from my mind and thoughts.
Thanks again Dave, you we're really helpful, Audrey , Michelleanne, Alison, all of you.
Today is another day.
I was sooo lucky you checked in Dave.
Love to you all,
Helen
Hi all
hope you have a peaceful Easter Day , please be kind to yourselves ❤️
Hi Dave, I've checked out your message with photos.. it's something from Whit Davies. Is that right? There's something else from you but I cant open it.
In the light ... or darkness of my downer last night... I checked out 'side effects' from my recent antibiotic and was 'relieved' to read ... depression and anxiety... so my low spell had a reason. And also my forgetfulness was probably from the anxiety/confusion, also side effects.
Dave, I read that your cortisone is messing up your mood too... I feel for you. It's really scary. We're here, please remember. I'm here.
Love to all, night night,
Helen
Hi all,
Hope you are all doing well considering.
Alison how are your eyes as I know you said you still had issues and we’re going back to treliske for another consultation. I hope you and your friend are managing to support each other though this traumatic time for you both. Hopefully the dogs and horses are also keeping you entertained. Have you managed to go any practise jumps at home or any hacks?
Audrey I hope you are well and life is getting a bit easier after the year you have had. I hope your daughter is gradually improving and the viruses and colds are getting less as the weather starts to warm.
Michelle. I hope they have got to the bottom of your coughing / breathing issue and I hope it is not lung gvhd. Also hope you have started venesection to get rid of your excess iron and hopefully that will also improve things for you.
Helen,
hope your Ecp is going well again and you are now feeling some improvement and maybe some better mobility. I guess you must be improving a little as a know a while ago you said you stopped driving due to immobility but noticed somewhere you posted you were driving again.
i yesterday had a bad Ecp session that stressed me the cells I had removed yesterday to be treated by the process had to be thrown away as they could not be returned to me as my blood was just continueally clotting the canula, needle, tubes and eventually just turned the collected blood cells to like jelly and it was just too thick and dangerous to return so was a bit of a waste of treatment. It is so long I have been in the state I am in and having all this treatment to try and improve and when it fails it makes it even worse. Anyway just wanted to touch base and let you know I was thinking of you all and let you know I am still here. Getting used to the clock change and enjoying looking at the daffodils telling us spring is here even though it is continually raining at the moment. Al least we should get lovely green grass this year,
Hi Alison,
so sorry you are feeling so low and things are getting you further down as all is not working out as planned. Don’t be too impatient about the tattoo I know you want to get it done to go or and remember Martin, hopefully a few days or so your artist will be able to do it. If not you should be able to find another.
You should be able to visit Martin whenever you want as that is your right. The women’s group should be accommodating and helping you to do this. I guess he is in the graveyard. If you get issues with them have a chat with the vicar he may be able to resolve the issue. Unfortunately drinking does not resolve the issues it usually makes issues worse and makes a person more miserable. A glass of wine now and again is not to bad to relax but excessive drinking will make you feel worse and may give you health issues. I now haven’t drunk anything for probably at least four years and I think I feel better for it even though at the moment I suffer heavily from depression, anxiety etc and often I could do with it. I am sure once my gvhd goes then with a little time so will my anxiety and depression. You have been down a hard road so you will feel depressed and lonely and afraid and upset so it is very difficult to get away from this and often improvements only come over time. I am sure Martin would not really like you drinking the way it sounds you are, he would want you to snap out of it for your sake.
your purpose now is to live again for you both , Martin would have wanted you to carry on the way you both enjoyed spending time together. Spending time with horses, jumping, going to new places, trying new foods, maybe try cooking new recipes or foods. I am also Martin would not mind you doing this with a friend as he would want to see a smile on your face as I am also sure he loved you more when you had a smile on your face.
What a kind message Dave, I agree. He's right Alison. I would try not to have the drink in the house... as soon as it's a decision.."do I or don't I", we're lost. I think lots of us have had phases in our lives where addiction has been a potential problem. Don't go down that road, it goes nowhere. You're in such a challenging phase and self medication (as it's sometimes called) just isn't a solution. It's terribly hard, but you'll get there, with Martin's love guiding you.
Dave, your ECP thing is scary, but I've had the same. With me it's my 3x high thrombozyt value and my blood coagulates and bungs up the machine. Some weeks are worse and the machine stops every 10, 20 minutes. They gave up one time. I always ask about my thrombo values but they always say it's nothing alarming. I think I'm also at risk of a stroke from it. But I take Aspirin protect.
Unfortunately I took a peek on google, never a good idea, and it says it's to do with bone marrow. But if my team are fine, I am too. Relax about the ECP, it's just distressing.
I'll get off, love to you all, Michelleanne thinking of you too. Best of luck.
Helen
X
Hello everyone . You all are struggling so much and yet how you all try to boost each other up and always have kind words to say.
I can’t get involved too much in your symptom chat as I have not gone through it . I do however, think that the “ health and wellbeing “ chat is good for us all to participate in and encourage each other in whatever way we can.
My heart is always with you all. I can understand that it must be difficult to relax even when things are going better as I always worry about my daughter . Thank you all for asking about her . She is going to have ongoing problems with her chest but on the whole she seems to be doing well . She has actually now got a job! I was worried that it was too soon but I can see that she needed it to feel more like her former self . I hope she can cope with it . It’s mostly working from home which of course keeps her safer from infection etc .
Anyway, I hope that this will be encouraging for others None of us, even the most healthy , knows what is round the next corner so keep ploughing on , being the kind , compassionate people that you all are . Sending love ❤️
That's terrific news Audrey, she's young, she going to get this, beat it. Your news is inspiring, thank you so much. It's not easy to share things here that are soo good because we're struggling so much. You've really cheered me up! How wonderful for her children.... and of course you... and your daughter... and all... and our little group.
Night night.. hooray! X
Thank you so much, Helen . It’s so good that she’s doing well at the moment . I tell her about my friends here and how you are all struggling in different ways. I also tell her how strong in character you all are and so supportive to each other and to me . She doesn’t know you all and yet she’s in awe of everyone here .
patients and family can never fully relax and my daughter and I never take anything for granted
We’re all on a roller coaster journey in different ways and we will all have up times as well as the struggles. X
That's nice. I bet she's pleased you've found support here.."in your pocket". I think of her sometimes... she has two boys right? In my head they're about 6 and 8. Funny how we just fill in the dots.
I tell hubby about you all too. It certainly helps him to know you're with me. He feels sooo overwhelmed by it all so often, and wth this sense of "normality" from you all, I can reassure him it's par for the course. So hard to believe.
Night night,
Love to you all
Helen
I saw my GP today. I was a bit worried about being forgetful and anxious and very low recently. I also find it difficult with the language, as you know.
She was great. Really took time. I thought I might need a check up with a neurologist, but she said, she doesn't have another patient who's been as ill as me and that it's to be expected and that I just need to be kind to myself and try not to be frightened of being depressed or forgetful but be accepting of myself in a kind way and not to have high expectations.
I came home with an action plan which she worked through with me and I have to see my therapist.
It was really kind of her. At the same time, it's awful. I feel like I'm waiting to die quite often.
Sorry to finish on that note, night night.
I hope you're all tucked up in bed. X