maybe talking to someone will help put things in prospective I know it helped me and it give me peace of mind
I don’t want to know what’s going to happen in the future , I live in the present otherwise I worry
you will get through this we all will , maybe just not like we were before , let’s show people what they are missing I have lost lots of so called friends and family through all of this , now I know talking to my councillor it’s there problem not mine
Good night all, I just popped in to copy the name of the...Rituximab. I'm hoping it'll help. I wish you could get jakavi on the nhs Dave. The staff are fantastic but they don't make financial decisions. I'd love to send you some Dave, only joking ... I bet it's all been tried.
I'm glad you experience the good care of the nhs Michelleanne. It's certainly an excellent system. But just like here in Germany, the health service needs much more money. We cost a lot .. LOL.
Here's hoping your daughter continues little steps in the right direction Audrey. Wonderful she's got the boys. ... and you. ...that you've got each other.
I wonder what this is doing to us emotionally. I left hubby just before my diagnosis. After 8 months in the clinic I moved back in and let my flat go. We're doing really well thanks to a therapist in the clinic back then and a therapist locally. In the clinic she just told me, I'm in the now and not in my old film, neither are my family. It was a very memorable moment. I had put them through he'll, cutting hubby off when suffering. I hope I'm not over sharing. I realised what she meant and what I'd been doing. We don't know where life is taking us. It's cruel too. But I get a good feeling here. It feels like we're level headed in the face of all this. I bet there's more misery in the local supermarket car park than here.
Dave, I've tried sitting yoga on you tube , which was good. And I wouldn't be here without bbc sounds app. I've also checked out stuff for someone in England with disabilities, they offer things which could be interesting. Have you got a wheelchair Dave?. I got one , hopefully on prescription, this week.
I also have a playlist on spottify called dance therapy. I can wobble to it holding a chair. I have to smile ... thanks you three.
Much love
Helen
PS. I'll let you know about the rituximab. Let me know if you get anywhere with it Dave..
My illness has brought us much closer as a family , through a rollercoaster from ****.
I just spotted your post from 21.5 and I totally agree. It's hard though.
I have to be in the now too. My brain is unsure in the past and also plenty of places I don't want or need to go to there..and the future is "no mans land", I can actually even get annoyed with the idea of hope.
I asked today about rituximab Dave and it's apparently not prescribed for my skin problem. I'll keep at it though, I wasn't convinced.
Much love to you all, you can picture me, I'm lying in my clinic bed with my jeans and top, with the window open,...plenty of time for pj's. There's a Building site over the road but thankfully quiet. I can hear the birds. My direct neighbour is nice.
I'm with you, thinking of you, thanks for being there.
pleased to hear it’s brought you all closer as a family , it has with us also , but sometimes a feel lonely don’t know if that’s with 8 months in hospital
hope you will be home soon keep enjoying the birds singing
Hello everyone . It’s lovely to read all of your texts and it’s so good that you all feel comfortable enough with this group that you can share whatever you would like to say.
I can see ( although probably don’t fully understand ) just how much my daughter has suffered emotionally as well as physically. All your lives have been turned upside down , as has mine in a different way, and I think all we can do is live in the present. I try to look around at the green grass, the blue sky and appreciate the caring people in my life .
I also appreciate all of you, as you help me to understand some of the feelings as well as the physical symptoms that you are all going through.
Sometimes it is hard to take in that I have recently lost a son and my elder daughter has such a fight on her hands. However, with all your help, I feel positive that things can get better . Life will never be the same for any of us but that doesn’t mean that it can’t be good .
sending love and positive thoughts to my three amigos. Xx
it’s so hard for everyone patients and loved ones alike
I can’t even imagine what as a family you have been through with loosing you’re son then you’re daughter I don’t know hope you have coped I’m in awe of you 🥰
I think everyday of my happy place even on a bad day , it’s what gets me through it .
i know it helps me this group so much , I feel at ease and happy talking to you all
i feel so humble that you all want to share things too
Hi Everyone , sorry to jump on this post. Hope you are all doing well. I’ve just seen Auds that your daughter has been up and down after a 2nd SCT. My husband has also had a 2nd sct in No. 22 Would you mind me asking what your daughters levels were? As his has been slowly going down since April although he did get coronavirus which they did say was not Covid? Im just worried sick as I can’t remember last time as it was in 2005.
Hi Beaglegirl, I can't help with your question, but corona, covid..?
Two months ago I was overnight in the clinic on the blood Cancer ward (only for the night for 2 day ECP, I'm in remission). A sister came in and said, don't be surprised when we come in fully covered, hair and full body cover for hygiene, we've just found out from your blood sample that you have corona, but not covid. They said I wasn't to worry.
I didn't "get it". A bit like your hubby. I just need you to know, it lead (I think) to a gvhd flare up which I'm still suffering from now. I hope at some point to get stable again, but it's taking ages. My blood results are fine apart from thrombozytes 3x too high, but they say it's from the gvhd itself.
I wish you luck on your info search Beaglegirl. Your hubby's got a very caring partner:)
Thankyou so much for your reply. that’s exactly what they said to us. They kept saying non covid!? He’s been re admired this morning as his temp went to 39 and kept blacking out. They say it’s esbl. His platelets have gone up 57 but his HG has gone down from 93 to 82. It’s so hard not to worry about what it could be. He’s a fighter and although getting fed up with being in hospital he’s trying to re assure me bless him. I’m just so worried about him it’s making me ill. Hope your feeling better soon x
I hope you're coping somehow David, Michelleanne, Beaglegirl, Audrey and your daughter, and all your loved ones.
It's the holiday weekend here. Holiday greetings to you all.
My open wounds are really challenging but I'm feeling positive today. My adult children were round.
My poor brother in England, is struggling with lung problems but strangely it feels good and empowering to be able to help him, phoning, sending podcasts and such.
I think the ecp is kicking in a bit, plus I'm taking plenty of painkillers.
its holiday weekend here , and the sun is shining the weather has been lovely for a couple of weeks , I feel in my mind very positive so I hope this continues
still got all of my other problems , I’m at clinic next week so see what they have to say
you sound very positive , hope this continues and you’re skin starts to improve
hope all is well with you Dave , audrey and beagle girl
Helen and Michelle - it’s lovely to “feel” the positivity in your posts despite all the challenges that you face on a daily bases . I think this cruel illness makes you all mentally stronger and Helen, it’s wonderful that despite what you are going through , you can encourage and be compassionate towards your brother .
Beagle Girl, I’m sorry for the slow reply. My daughter was dreadfully ill after her second transplant and we were actually told to prepare for the worst. She was in hospital for over 5 months with one thing after the other going wrong. However, very slowly she began to turn the corner . This group kept me going, encouraging me , telling me that the medics know what they are doing and will adjust treatment to fit the patient. Her levels did drop and were very low but gradually they have begun to improve .
I still worry and we are all living in the present taking one day at a time . Please know that your husband will be getting the best care and his team of doctors won’t give up. It’s so difficult for the loved ones of those going through the harsh treatment. I know that I just wanted to make my daughter well and it was the times when she was so miserable, missing her wee boys that made me feel even worse . Please keep talking to us . The people in this wee group have developed a strong bond and we really try to support and encourage each other .
Dave, I really hope that things are getting a little better for you. If you can, please keep in touch as we all care about you.
I would like to share something that happened on Saturday. My daughter’s two wee boys did a 1k run for Blood Cancer UK and have raised almost £2000.
Anyway, I hope the sunshine is lifting everyone’s spirits and I’m sending hugs to you all.
The med teams are fantastic, but always be vigilant. They made a mistake with me in February but have told me I don't need to be frightened of it happening again. That was the episode of abruptly stopping meds plus my infection which ended up with eye problems, lenses and morphine.
Anyway, ...
Wondered how your mobility is Dave? Is that new med helping? Afraid mines the same or worse. Found out that gvhd skin should be treated as excema. It's good to be able to look in you tube for tips. Might be helpful Dave.
One useful tip, if affected gvhd skin gets wet, it needs moisturiser applied within 3 minutes. Only problem is , doesn't seem to apply to open wounds/skin.
Hi Helen. I’m really sorry that you are still struggling. It seems to be so much trial and error until they find what works for you.
Thinking about everyone and their daily struggles. Patience seems to be the key word, even for the loved ones of patients, as we so much want to see you all make good progress .
helen I’m so sorry to hear things aren’t getting any better , hope they find something that will help I use a ointment that’s like Vaseline to wash and use as a moisturiser it’s the only thing that helps
I also have drops for my mouth when that’s sore I’m still on all my meds they say maybe 5 years before they think of taking me off them
Dave we haven’t heard from you in a while hope you’re ok ? I never look on the internet about my illness as it frightens me
audrey hope all is going well , I totally agree with what you have said
I am still here. Finding it hard as normal and I guess as impatient as ever and hoping for improvement after my last weeks infusion on Wednesday, however really it is too soon for results if I get any improvement at all. It seems such a long road.
Hope you are all well. Helen you sound to be having a bit of a hard time like me. However it was good you had a visit from your son I believe the other day, and good of you supporting your brother when you are too also finding it hard.
Audrey, It sounds like your daughter is still doing well and is strengthening. She has a long road to go but I hope she finds it not so difficult.
Muchelle,
I don’t know how you do it? You seem to manage quite well even with the issues thou have. I hope these get less and things improve.
I am currently on my Ecp treatment and is nearly a year since I started it, not really sure if it is doing that much for recovery but I guess is calming my immune system down. Another Rituximab infusion next Tuesday so hopefully that may have results soon,
Thankyou all for being there and for your concern. You do all keep me going.
Comments
Hi dave
im so sorry to hear , you wife is not with you
that is awful , I can’t imagine how that feels
maybe talking to someone will help put things in prospective I know it helped me and it give me peace of mind
I don’t want to know what’s going to happen in the future , I live in the present otherwise I worry
you will get through this we all will , maybe just not like we were before , let’s show people what they are missing I have lost lots of so called friends and family through all of this , now I know talking to my councillor it’s there problem not mine
keep strong & take care always here
❤️
Good night all, I just popped in to copy the name of the...Rituximab. I'm hoping it'll help. I wish you could get jakavi on the nhs Dave. The staff are fantastic but they don't make financial decisions. I'd love to send you some Dave, only joking ... I bet it's all been tried.
I'm glad you experience the good care of the nhs Michelleanne. It's certainly an excellent system. But just like here in Germany, the health service needs much more money. We cost a lot .. LOL.
Here's hoping your daughter continues little steps in the right direction Audrey. Wonderful she's got the boys. ... and you. ...that you've got each other.
I wonder what this is doing to us emotionally. I left hubby just before my diagnosis. After 8 months in the clinic I moved back in and let my flat go. We're doing really well thanks to a therapist in the clinic back then and a therapist locally. In the clinic she just told me, I'm in the now and not in my old film, neither are my family. It was a very memorable moment. I had put them through he'll, cutting hubby off when suffering. I hope I'm not over sharing. I realised what she meant and what I'd been doing. We don't know where life is taking us. It's cruel too. But I get a good feeling here. It feels like we're level headed in the face of all this. I bet there's more misery in the local supermarket car park than here.
Dave, I've tried sitting yoga on you tube , which was good. And I wouldn't be here without bbc sounds app. I've also checked out stuff for someone in England with disabilities, they offer things which could be interesting. Have you got a wheelchair Dave?. I got one , hopefully on prescription, this week.
I also have a playlist on spottify called dance therapy. I can wobble to it holding a chair. I have to smile ... thanks you three.
Much love
Helen
PS. I'll let you know about the rituximab. Let me know if you get anywhere with it Dave..
Hi all
helen I think this illness to effect emotionally just as much as our mind and body
it’s a very big change to our lives ,some people manage better and quicker than others
I glad you feel comfortable to talk about things it’s as good as therapy lol and if it helps us all do it
audrey you have been through a dreadful time hopefully now you and your family will have a happier time going forward , how’s you’re daughter
Dave you can share whatever you feel comfortable with as long as it helps you
❤️
Thanks Michelleanne,
My illness has brought us much closer as a family , through a rollercoaster from ****.
I just spotted your post from 21.5 and I totally agree. It's hard though.
I have to be in the now too. My brain is unsure in the past and also plenty of places I don't want or need to go to there..and the future is "no mans land", I can actually even get annoyed with the idea of hope.
I asked today about rituximab Dave and it's apparently not prescribed for my skin problem. I'll keep at it though, I wasn't convinced.
Much love to you all, you can picture me, I'm lying in my clinic bed with my jeans and top, with the window open,...plenty of time for pj's. There's a Building site over the road but thankfully quiet. I can hear the birds. My direct neighbour is nice.
I'm with you, thinking of you, thanks for being there.
Helen
Hi helen
pleased to hear it’s brought you all closer as a family , it has with us also , but sometimes a feel lonely don’t know if that’s with 8 months in hospital
hope you will be home soon keep enjoying the birds singing
keep safe and take care ❤️
Hello everyone . It’s lovely to read all of your texts and it’s so good that you all feel comfortable enough with this group that you can share whatever you would like to say.
I can see ( although probably don’t fully understand ) just how much my daughter has suffered emotionally as well as physically. All your lives have been turned upside down , as has mine in a different way, and I think all we can do is live in the present. I try to look around at the green grass, the blue sky and appreciate the caring people in my life .
I also appreciate all of you, as you help me to understand some of the feelings as well as the physical symptoms that you are all going through.
Sometimes it is hard to take in that I have recently lost a son and my elder daughter has such a fight on her hands. However, with all your help, I feel positive that things can get better . Life will never be the same for any of us but that doesn’t mean that it can’t be good .
sending love and positive thoughts to my three amigos. Xx
.
Hi audrey
lovely to hear from you
I totally agree with what you say
it’s so hard for everyone patients and loved ones alike
I can’t even imagine what as a family you have been through with loosing you’re son then you’re daughter I don’t know hope you have coped I’m in awe of you 🥰
I think everyday of my happy place even on a bad day , it’s what gets me through it .
i know it helps me this group so much , I feel at ease and happy talking to you all
i feel so humble that you all want to share things too
take care ❤️
Hi Everyone , sorry to jump on this post. Hope you are all doing well. I’ve just seen Auds that your daughter has been up and down after a 2nd SCT. My husband has also had a 2nd sct in No. 22 Would you mind me asking what your daughters levels were? As his has been slowly going down since April although he did get coronavirus which they did say was not Covid? Im just worried sick as I can’t remember last time as it was in 2005.
Hi Beaglegirl, I can't help with your question, but corona, covid..?
Two months ago I was overnight in the clinic on the blood Cancer ward (only for the night for 2 day ECP, I'm in remission). A sister came in and said, don't be surprised when we come in fully covered, hair and full body cover for hygiene, we've just found out from your blood sample that you have corona, but not covid. They said I wasn't to worry.
I didn't "get it". A bit like your hubby. I just need you to know, it lead (I think) to a gvhd flare up which I'm still suffering from now. I hope at some point to get stable again, but it's taking ages. My blood results are fine apart from thrombozytes 3x too high, but they say it's from the gvhd itself.
I wish you luck on your info search Beaglegirl. Your hubby's got a very caring partner:)
Best of luck to you both
Hi Helen,
Thankyou so much for your reply. that’s exactly what they said to us. They kept saying non covid!? He’s been re admired this morning as his temp went to 39 and kept blacking out. They say it’s esbl. His platelets have gone up 57 but his HG has gone down from 93 to 82. It’s so hard not to worry about what it could be. He’s a fighter and although getting fed up with being in hospital he’s trying to re assure me bless him. I’m just so worried about him it’s making me ill. Hope your feeling better soon x
Hello all,
I hope you're coping somehow David, Michelleanne, Beaglegirl, Audrey and your daughter, and all your loved ones.
It's the holiday weekend here. Holiday greetings to you all.
My open wounds are really challenging but I'm feeling positive today. My adult children were round.
My poor brother in England, is struggling with lung problems but strangely it feels good and empowering to be able to help him, phoning, sending podcasts and such.
I think the ecp is kicking in a bit, plus I'm taking plenty of painkillers.
Much love to you all,
Helen
Hi helen
its holiday weekend here , and the sun is shining the weather has been lovely for a couple of weeks , I feel in my mind very positive so I hope this continues
still got all of my other problems , I’m at clinic next week so see what they have to say
you sound very positive , hope this continues and you’re skin starts to improve
hope all is well with you Dave , audrey and beagle girl
❤️
Hi Everyone
Helen and Michelle - it’s lovely to “feel” the positivity in your posts despite all the challenges that you face on a daily bases . I think this cruel illness makes you all mentally stronger and Helen, it’s wonderful that despite what you are going through , you can encourage and be compassionate towards your brother .
Beagle Girl, I’m sorry for the slow reply. My daughter was dreadfully ill after her second transplant and we were actually told to prepare for the worst. She was in hospital for over 5 months with one thing after the other going wrong. However, very slowly she began to turn the corner . This group kept me going, encouraging me , telling me that the medics know what they are doing and will adjust treatment to fit the patient. Her levels did drop and were very low but gradually they have begun to improve .
I still worry and we are all living in the present taking one day at a time . Please know that your husband will be getting the best care and his team of doctors won’t give up. It’s so difficult for the loved ones of those going through the harsh treatment. I know that I just wanted to make my daughter well and it was the times when she was so miserable, missing her wee boys that made me feel even worse . Please keep talking to us . The people in this wee group have developed a strong bond and we really try to support and encourage each other .
Dave, I really hope that things are getting a little better for you. If you can, please keep in touch as we all care about you.
I would like to share something that happened on Saturday. My daughter’s two wee boys did a 1k run for Blood Cancer UK and have raised almost £2000.
Anyway, I hope the sunshine is lifting everyone’s spirits and I’m sending hugs to you all.
Hi All
we are here for all on this group , it is such a cruel illness and the recovery is very slow
we have to take one day at a time and have faith in those that care for us the medical staff know what they are doing
keep talking always here
I know it helps me so much
❤️
Hi all,
The med teams are fantastic, but always be vigilant. They made a mistake with me in February but have told me I don't need to be frightened of it happening again. That was the episode of abruptly stopping meds plus my infection which ended up with eye problems, lenses and morphine.
Anyway, ...
Wondered how your mobility is Dave? Is that new med helping? Afraid mines the same or worse. Found out that gvhd skin should be treated as excema. It's good to be able to look in you tube for tips. Might be helpful Dave.
One useful tip, if affected gvhd skin gets wet, it needs moisturiser applied within 3 minutes. Only problem is , doesn't seem to apply to open wounds/skin.
I'll get off here. Thanks for being there,
Love,
Helen
Hi Helen. I’m really sorry that you are still struggling. It seems to be so much trial and error until they find what works for you.
Thinking about everyone and their daily struggles. Patience seems to be the key word, even for the loved ones of patients, as we so much want to see you all make good progress .
Always thinking about everyone . Xx
Hi all
helen I’m so sorry to hear things aren’t getting any better , hope they find something that will help I use a ointment that’s like Vaseline to wash and use as a moisturiser it’s the only thing that helps
I also have drops for my mouth when that’s sore I’m still on all my meds they say maybe 5 years before they think of taking me off them
Dave we haven’t heard from you in a while hope you’re ok ? I never look on the internet about my illness as it frightens me
audrey hope all is going well , I totally agree with what you have said
take care much love ❤️
Hi All,
I am still here. Finding it hard as normal and I guess as impatient as ever and hoping for improvement after my last weeks infusion on Wednesday, however really it is too soon for results if I get any improvement at all. It seems such a long road.
Hope you are all well. Helen you sound to be having a bit of a hard time like me. However it was good you had a visit from your son I believe the other day, and good of you supporting your brother when you are too also finding it hard.
Audrey, It sounds like your daughter is still doing well and is strengthening. She has a long road to go but I hope she finds it not so difficult.
Muchelle,
I don’t know how you do it? You seem to manage quite well even with the issues thou have. I hope these get less and things improve.
I am currently on my Ecp treatment and is nearly a year since I started it, not really sure if it is doing that much for recovery but I guess is calming my immune system down. Another Rituximab infusion next Tuesday so hopefully that may have results soon,
Thankyou all for being there and for your concern. You do all keep me going.
lots of love
Dave
Hi Dave
it’s lovely to hear from you , I hope you get some ease from this treatment soon
hope you start to have brighter days soon
i feel I’m doing ok at the minute just do what I can when I can
I still have very hard days but I try not to let it get me down
take care always here to talk
❤️