Oh Helen - I think that you really need to be kind to yourself. You have gone through and are going through so much and it’s no wonder that you sometimes feel overwhelmed with it all.
I can remember at the beginning of my daughter’s journey , reading about the phsychological impact of such a serious illness . My daughter is very strong and I couldn’t imagine that happening to her . I was very naive and didn’t know much about blood cancer! It’s such a hard illness and when you think that you should be getting better, you’re then hit with all the dreadful side effects of the treatment. So please , pat yourself in the back and tell yourself how well you are doing, even on your very bad days . Because you get up, keep going and help so many others .
my daughters boys are 3 ( 4 next month ) and 6. They are doing amazingly well and thank you for caring.
i feel like that a lot , my memory , I loose my train of thought , I don’t think of dying , I have terrible mood swings some days , I think it’s just part of the course
I’m trying to be kind to myself and give in some days take care stay strong ❤️
After my appointment I researched an online course I did before the leukaemia diagnosis and tried to find it, it did me so much good that first time around. It was a free online course on the futurelearn platform about mindfullness and self compassion.
I did find it, it's still there, but I've started another one... psychological first aid PFA. it wasreally interesting and I see that you both, and my Dr are right. My symptoms are from the illness and trauma from being in hospital from april/may to February the next year. I guess i hadn't accepted the phenomenal mental recovery process.
I don't like to talk about leukaemia or cancer because I'm cancer free and that helps me. I don't identifx with cancer patients. I've just got this awful cgvhd.
One of the things on my 'treatment/to do' list is to write a diary. I started one and do it from a funny perspective... I take the mickey out of the gvhd ... it only works when I'm relatively ok, but it's good to get a bit of distance from it.
Good morning, I'm off for my ecp today. Looking forward to getting home tomorrow and feeling a bit normal.
I had a meal out last night and could taste everything. It was amazing.. think I must be getting taste buds back. Let's hope it stays, at least a while.
You're all with me. Thank you, I hope you're all at least ok and feeling stable and calm. That would be great..
That is such good news for you. You can now start to enjoy food again and give you the desire to eat. Such a long time for you. I lost mine a while ago but luckily with time they did come back. It is so strange the different timescales for everyone but it tells you your body is still working in the background to fix things. I still feel full most of the time due to the tight fascia band around my stomach h and lower back but I think I am starting to get hunger pangs bit by bit. In a way not to have them was also nice as well as I could get away not preparing food.
on a good note I think for me as well I think my tightness in my legs is starting to reduce as my range of motion has slightly increased not that it is benefitting me at the moment but the tests I have done show that I think I am moving in the right direction even though I cannot feel the benefit yet. I just want to carry out a few more tests to confirm to myself that I am right or not. If I am right it will still take time to get more range of motion back, stretches, exercising etc to get more back to normal but it then gives hope I am going in right direction.
Hopefully this goid or possible good news will give us all a lot more hope of improvement and getting better.
i hope everyone is well and things hopefully for everyone if not physically then mentally.
i haven’t had good taste buds since 1998 due to radiotherapy , I can’t taste mild food ,but can’t eat spicy , I really hope your movement is getting better 🤞that will make a big difference stay strong❤️
Have they got any further with a diagnosis for your chest problems? You've been so long without taste. That's really hard :(
How's it going?
Dave, I'm glad at least markers and tests are suggesting things are positive. I hope very soon you start feeling the benefits. Who knows... maybe you'll crack this gvhd. Wouldn't that be great ... I'd immediately try get a job.
Alison, Audrey... how're you two doing? How's your daughter doing Audrey?
I just got back from lymph massage and senior gymnastics- all on one morning... absolutely exhausted. I'm on the sofa.
Helen, it’s so good to hear that the ecp is going well and you are now managing to enjoy your food . You sound so much more positive which is wonderful and I hope that this better journey continuesi🦋
It is also great to hear that you feel that you are moving in the right direction, Dave . I know that it must seem slow and very frustrating at times but if you can see the small improvements, that’s half the battle .
my daughter was in getting her immunoglobulin transfusion today. She had her laptop in with her , working away while this was going on . The colds are still relentless but they are not stopping her from functioning which is so good .
you are all on such a roller coaster journey, and you all seem to be coping as well as possible . I’m in awe of everyone and sending you all positive wishes that these small steps forward continue and even change into larger steps . ❤️
I spend too long online, discovered Facebook... some nice groups, slow stitching... I used to embroider before. I'm not back there yet.. it's still nice to share about other things though.
Unfortunately my feet are getting worse. I know where it'll end up again if it goes on. I'm going to phone them tomorrow.. I don't want to start using the opiate again, however little.
I have the feeling I was improving but now going backwards, friends also say getting worse with walking. I've talked through my dark thoughts and depressed days with therapist and hubby which was helpful. Hasn't changed anything but I know I need to feel in control and thats ok.
Comments
Oh Helen - I think that you really need to be kind to yourself. You have gone through and are going through so much and it’s no wonder that you sometimes feel overwhelmed with it all.
I can remember at the beginning of my daughter’s journey , reading about the phsychological impact of such a serious illness . My daughter is very strong and I couldn’t imagine that happening to her . I was very naive and didn’t know much about blood cancer! It’s such a hard illness and when you think that you should be getting better, you’re then hit with all the dreadful side effects of the treatment. So please , pat yourself in the back and tell yourself how well you are doing, even on your very bad days . Because you get up, keep going and help so many others .
my daughters boys are 3 ( 4 next month ) and 6. They are doing amazingly well and thank you for caring.
we’re always here for each other.
sending hugs. 🤗
Hi helen
i feel like that a lot , my memory , I loose my train of thought , I don’t think of dying , I have terrible mood swings some days , I think it’s just part of the course
I’m trying to be kind to myself and give in some days take care stay strong ❤️
Hello, thank you for your kind words.
After my appointment I researched an online course I did before the leukaemia diagnosis and tried to find it, it did me so much good that first time around. It was a free online course on the futurelearn platform about mindfullness and self compassion.
I did find it, it's still there, but I've started another one... psychological first aid PFA. it wasreally interesting and I see that you both, and my Dr are right. My symptoms are from the illness and trauma from being in hospital from april/may to February the next year. I guess i hadn't accepted the phenomenal mental recovery process.
I don't like to talk about leukaemia or cancer because I'm cancer free and that helps me. I don't identifx with cancer patients. I've just got this awful cgvhd.
One of the things on my 'treatment/to do' list is to write a diary. I started one and do it from a funny perspective... I take the mickey out of the gvhd ... it only works when I'm relatively ok, but it's good to get a bit of distance from it.
Love to you all, I'm still here!
Helen
Good morning, I'm off for my ecp today. Looking forward to getting home tomorrow and feeling a bit normal.
I had a meal out last night and could taste everything. It was amazing.. think I must be getting taste buds back. Let's hope it stays, at least a while.
You're all with me. Thank you, I hope you're all at least ok and feeling stable and calm. That would be great..
Love
Helen
Hi Helen
that’s good news about your taste buds , it’s awful when you can’t taste food take care xx
I haven't been able to taste since june, july 2021. It's wonderful. I didn't even suffer any more, I just didn't taste things.
Hi Helen,
That is such good news for you. You can now start to enjoy food again and give you the desire to eat. Such a long time for you. I lost mine a while ago but luckily with time they did come back. It is so strange the different timescales for everyone but it tells you your body is still working in the background to fix things. I still feel full most of the time due to the tight fascia band around my stomach h and lower back but I think I am starting to get hunger pangs bit by bit. In a way not to have them was also nice as well as I could get away not preparing food.
on a good note I think for me as well I think my tightness in my legs is starting to reduce as my range of motion has slightly increased not that it is benefitting me at the moment but the tests I have done show that I think I am moving in the right direction even though I cannot feel the benefit yet. I just want to carry out a few more tests to confirm to myself that I am right or not. If I am right it will still take time to get more range of motion back, stretches, exercising etc to get more back to normal but it then gives hope I am going in right direction.
Hopefully this goid or possible good news will give us all a lot more hope of improvement and getting better.
i hope everyone is well and things hopefully for everyone if not physically then mentally.
Hi all
i haven’t had good taste buds since 1998 due to radiotherapy , I can’t taste mild food ,but can’t eat spicy , I really hope your movement is getting better 🤞that will make a big difference stay strong❤️
Hi Michelleanne
Have they got any further with a diagnosis for your chest problems? You've been so long without taste. That's really hard :(
How's it going?
Dave, I'm glad at least markers and tests are suggesting things are positive. I hope very soon you start feeling the benefits. Who knows... maybe you'll crack this gvhd. Wouldn't that be great ... I'd immediately try get a job.
Alison, Audrey... how're you two doing? How's your daughter doing Audrey?
I just got back from lymph massage and senior gymnastics- all on one morning... absolutely exhausted. I'm on the sofa.
Love to all,
Helen
Helen, it’s so good to hear that the ecp is going well and you are now managing to enjoy your food . You sound so much more positive which is wonderful and I hope that this better journey continuesi🦋
It is also great to hear that you feel that you are moving in the right direction, Dave . I know that it must seem slow and very frustrating at times but if you can see the small improvements, that’s half the battle .
my daughter was in getting her immunoglobulin transfusion today. She had her laptop in with her , working away while this was going on . The colds are still relentless but they are not stopping her from functioning which is so good .
you are all on such a roller coaster journey, and you all seem to be coping as well as possible . I’m in awe of everyone and sending you all positive wishes that these small steps forward continue and even change into larger steps . ❤️
Hello all,
It's been a while.
I spend too long online, discovered Facebook... some nice groups, slow stitching... I used to embroider before. I'm not back there yet.. it's still nice to share about other things though.
Unfortunately my feet are getting worse. I know where it'll end up again if it goes on. I'm going to phone them tomorrow.. I don't want to start using the opiate again, however little.
I have the feeling I was improving but now going backwards, friends also say getting worse with walking. I've talked through my dark thoughts and depressed days with therapist and hubby which was helpful. Hasn't changed anything but I know I need to feel in control and thats ok.
I'll get off, night night y'all;)