just finished my first Ecp for this week and it also looks like my rezurock is waiting for me at one of the other Oxford hospitals. Trying to see if I can get a taxi arranged or something to bring it to where I currently am as not sure my transport will drive to other hospital. Keep fingers crossed for me. I am hoping this may be a game changer for me. Not relying on it working as many other things not worked to date but I now have a little hope.
I really hope that the resurock helps you , Dave . I think that it’s great that you are trying everything possible and not giving up. Either the resurock or something else will eventually help. Good luck and let us know how it goes . I hope that you can arrange transport and get it as quickly as possible . X
It is watch this space now. Just took my first dose. I was a bit apprehensive of taking the medication as the only thing giving me hope currently and I am afraid it may make. No difference for me.
Thanks for sharing all that information about yourselves again. Of course I knew it from 'our beginnings ' but useful to have a recap. It's hard to believe it all. I suppose here would be the best place to recap mine... 2019 meningitis with facial paralysis, breast cancer, mastectomy, everything good- no need for radiotherapy, I was told in a different second opinion hospital - but here I was told, "you're getting it because we do everyone ". Then 21 leukaemia, caused by the radiotherapy. I was so I'll the Prof said they would not have given me stem cells in England. I would have died. It wasn't diagnosed early by my gp. She just said, but Frau Kotthoff you've always had low leukocytes... eventually I got a second opinion and got picked up by an ambulance and stayed in the clinic from May to the next February... mind boggling. The background to this was some poor psychotherapy, leaving my husband, then in the clinic getting, thank goodness, some very good therapy, and moved back to my husband on return from the clinic. I'm coming to terms with it all very gradually.
I don't have any exciting hobbies, since I've been ill I haven't touched my hobbies... pottery, embroidery, drawing, painting, calligraphy, reading, poetry. Quite sedentiary ... if that's a word?
I'm delighted to hear all that about the horses Dave and Beaglegirl. Such wonderful animals. A good friend works with them, teaches voltegieren? ... don't know what that is in English. My daughter did it for years with her, we went to a few competitions etc. They had a wonderful horse, "rocky". A very heavy footed horse with a very wide back ... very strong. Poor thing died suddenly... all years ago now, but he was wonderful, a real rock, calm, reliable... so sad, he died suddenly... I've never been close to an animal, we were in tears.
I'm not doing so well. But I was doing really well... the dermatologie treatment gave me such a boost with my newly won mobility. If I put my mind to it I could even walk and it looked almost normal. It lasted a few weeks, so much that I really thought I was winning. Unfortunately, my ulcers are getting worse on my feet again and I've got a slight infection on my chest. The Dr just ordered a blood test to see what the leukaemia values look like. I was a bit shocked, But they've probably got their eye on it. I hope they get the results quickly, I can tell it's worrying me. She backtracked and said it's only formality, standard practice, but still.
I'll tell poor hubby tomorrow.
Michelleanne, did you take antibiotics for your chest infection? The Dr said it's not lung gvhd cos that'd be on both sides. ... thank goodness.
I'd be curious to hear if your families do know each other, Dave and Beaglegirl. It's really wierd, a good English friend here.. her mum went to my mum's school and the families knew of each other. Fareham, Alverstoke area.
I'm on Facebook but I'd rather focus my screen time on our little group here. Fb is good if I have a specific gvhd question.
so sorry you are feeling down , do you think the dark days make things worse ? I’ve had a few doses of antibiotics and steroids , now I’m taking a low dose of antibiotics all the time , I’ve had a ct scan so see what they say now , it would be weird if the families did know each other ❤️
sorry you are feeling so low but I do know where you are coming from. I think psycologically gvhd does so much damage especially when the recovery path does not seem to go the way you want it to. 1 step forward then 3 steps back.
I think you have had a harder time with your issues than I have had I didn’t think it was possible, and to be in a clinic for over a year must have also been so hard on you and your husband.
Michelleleeanne,
I hope the antibiotics start to improve things for you. Did they take pot luck with which antibiotic to use or was it determined by a blood test or biopsy. Whichever way I hope it does work as is so horrible with breathing issues.
with regard to our families knowing each other I think we are fairly certain they do not. We just know of quite a few same people and both spent at different times life in same places. It is a strange coincidence.
Hipefully over the next year we will all gradually improve, not just our health but also our minds and gradually come to terms with everything that has happened along life’s path. It will take a long time for most of us but we will get there bit by bit. Baby steps as they say.
Thinking about everyone . What you have all gone through and are going through would be non comprehensible to some people.
i just want you all to know that I’m thinking about you every step of your journey. Hopefully, when winter blows away and spring arrives, spirits will lift and all your positive natures will be fired up again.
Michelle, my daughter has been on daily antibiotics since she was discharged from hospital at the end of last year . They said that she will be on them for life . I do hope that they will prescribe them for you and they will help your breathing/ lung issues .
Thank you all for your thoughts, mentally I'm not so bad, considering. It's the physical, chest infection plus losing my mobility again... the physical down after a physical up is always hard. That's it Dave, 1 step forwards 3 back at the moment ... it'll change.
The Prof stopped my regular ecp today... said he wants to see me in 3 weeks and will decide then when/if I need my next ecp. He says my immune system is too weak, hence the chest infection. Initially I was shocked and stood my ground but accepted it. I need to contact him as soon as I have problems.
Never a dull moment,
Love to you all. Thanks for being there
... Beaglegirl, we're with you, take a break if you need to, we can understand, we'll be here when it feels right. X
I don’t understand your doctor. Gvhd is caused by an overactive immune system so how can it be weak. Stopping Ecp could cause flare ups and make things worse. You usually stop a treatment for gvhd when things start to get better. However I did hear from my Ecp nurses that the doctors were planning taking patients off Ecp as they get rezurock. This has got to be for cost saving reasons as the method of actions on gvhd are completely different blocking different pathways. Anyway I guess who are we to question. Some times I don’t understand these decisions.
thats my issue low immune system , they are now investigating why it’s not improving , I also have to much iron which can effect vital organs again 1 step forward and 3 back hopefully we’ll all turn the corner soon ❤️
Do they regularly take blood from you and throw it away as this seems to be the process they generally follow to bring it down, and they say you often get this from many transfusions. Whatever I hope they get it down for you.
Venesection is the standard therapy for patients with hereditary haemochromatosis (HH), the most common iron-overload condition. Venesection typically involves the removal of 500 ml of blood (equivalent to 250 mg of iron) weekly from patients until normal iron levels are achieved.
i have venesection every 2 months , I was having it monthly but it was too much for me as it was bringing my hemaglobin low then I couldn’t have anything done my iron level was 2100 now it’s down to 850 they want it to 500 I’ve been having this for just over a year , then it knocks me to pot can’t win really ❤️
sorry it knocks you for 6 but it is very good you are near your target. Hopefully you feel a lot better as the level normalise. If you have done it for over a year you have worked hard to get it there. You should congratulate yourself on this achievement and making progress with your health. Congratulations from me.
About the 'stopping ' my ecp. I'm bearing with it till now, preparing my case for my next appointment in 2 and half weeks. The Prof has made a few good points, it's just not the way I would do it. At the moment I'm still within the old timetable. Unfortunately my feet are getting worse again daily... can't keep using cortisone. Mentally I'm ok. My chest infection is viral and seems to be slightly better. I'm resting as much as poss, need to get outside in the cold damp.
I'm crossing fingers for your ct Michelleanne, and your immunesystem. . For you too Dave about your rezurock when it comes.
Beaglegirl, I hope you've got some kind support from friends.
Audrey, I hope your daughter is doing ok. And you too, that you can find some peace somehow for you and your family.
Hi Everyone . You are all going through extremely challenging times in different ways . How I wish there was a magic cure but we all know that it’s trial and error and you must all try to stay positive . You all have great medical teams even though I know that at times you question their approach. It’s easy enough for me to say, when I’m not going through what you are all going through but please know that my heart is with you all.
Thank you all for asking about my daughter . She is doing as well as possible . Like Helen and Michelle - her lungs / chest have been damaged with all the treatment and at the moment, like you, Helen. She has a virus which is causing such a deep cough. Shes still having her 4 weekly immunoglobulin transfusions, on antibiotics for life and having her next bone marrow biopsy in 3 weeks ( always a tense time ).
However, she is doing well and so far has avoided gvhd. She started work last week which is a big step. I was worried that it was too soon but I think that she needs it for her mental health. Last year at this time I could never have imagined her being able to hold down a job. I’m hoping that telling you this will help you all to believe that things can improve.
just wondered if anyone was online for a chat? As I’m struggling to cope . I’ve tried support lines but they just don’t understand. Everyday is agony and all I want is my boy back 💔 I’ve managed a bath today but I can’t bear sitting here on my own in silence. However, I have to try for my dogs as they are grieving too. I really don’t know what to get from the support lines maybe to re me they can get Martin back but I’m reality I know this isn’t going to happen. The pain is unbearable and the whatifs plays wreck with me every second of the day. I’m not sure if I should ring Rachel in the AN Telephone as she really does help when I speak to her x
wow audrey your daughter is doing so well to get back to work it’s lovely to hear you must be very proud of her ❤️
beaglegirl I don’t know what to say to help you feel better , as I’ve never lost my husband I think it’s time if you get some help and ease talking to Rachel from AN then do it , stay strong ❤️
Just noticed your post as watching yet another film. Sorry you are finding it so hard but I guess really it is so inevitable. I think you should give Rachael from Anthony Nolan a ring as her words may help ease you a little and I know she would want to be there for you. However not sure they are still open tonight. A good soak in the bath sounds good a few minutes to try and relax a little and pamper yourself.
we are always here for support if you need us and I don’t see any of us disappearing that soon. We are like you suffering with our own issues but all wish we were not.
How are the dogs and horses, I bet they are still very confused and as you say grieving as the house will seem a lot emptier at the moment. What probably makes it worse is you being quite remote from everybody at the moment. I can also imagine at the moment also everything is such hard work when you want to be left alone and think of Martin. I too wish he would be back for you as you do not deserve to suffer. I wish I had previously met you both as you sound like you were a great couple and to see the warmth you shared between each other. I am sorry as I feel like I am rambling and I hope you can continue to chat to us when you feel you need it. You are helping us through everything as you write to us. Feel free to keep writing and we will try to be here as much as we can for you. If you want to chat about anything particular then let us know, or if you want a particular person to reply.
Also rather than sitting at home in quiet can you not phone up a close friend and see if you can pop over to see him or her for a chat or meet up for a drink as chatting to someone close I am sure would help a bit. Or ask them to come to you if you had not the energy or will. I know if I was a close friend I would do this to try and support you and I am sure your close friends would be there for you so don’t be afraid to ask.
Im so so sorry for your heartache and despair. I feel so much compassion and empathy as I am still grieving terribly for the loss of my son.
what I would say is the way you are feeling is normal- it’s grief at its worst. The despair and panic at the thought of never seeing your loved one again seems insurmountable . You can give into your grief just now . It’s such early days . I couldn’t eat, watch tv and was on autopilot for weeks . All I can say to help is that the horrendous ache will lesson a little over time .
Talk about Martin to us, to friends Talk to Martin .
i wish I could say or do more. When you are ready, you will be able to put one foot in front of the other and we’re all here for you. Xx
hi, I really hope someone is online. I’m having a really bad panic attack. I’ve been googling GCSF to prevent Neutropenic sepsis and it’s says it does. I’m now questioning whether I gave Martin what the doctors said. I know she said give one Saturday/Sunday then see you Wednesday. Oh god why didn’t they just keep daily injections as his Counts were fine he would have neutrophils and wouldn’t of been ill 💔💔💔
you cannot keep beating yourself up over this. You have done everything you possibly can for him and you know that as you loved him so much. If his life hung on having a gcsf injection or not the hospital would have not left it to you he would have been an inpatient at the time. Sepsis comes in when your body is too weak to fight and sometimes it can be fought off with antibiotics until your body can recover. If your body is too weak it is a lot more difficult and sometimes impossible.
when I had sepsis I was in intensive care fighting by my life the nurses monitor you 24 hours a day and you are given many different antibiotics to try help pull you through. They can’t always guarantee which one will work or if any will work.
it is better to try and remember Martin in the nice and good times you had together not the unfortunate times. Unfortunately you will need to accept he is no longer with us and not look for blame or fault. There is not always blame when unfortunately to say someone passed away.
I loved my grandparents so much and it hurt me when they passed but I could not blame anyone for thier passing as they had health issues and were old. I do blame myself afterwards for not spending enough time with them,
Please think of Martin in the memories of the happy times you spent together as that is what he would have wanted.
Comments
Hi all,
just finished my first Ecp for this week and it also looks like my rezurock is waiting for me at one of the other Oxford hospitals. Trying to see if I can get a taxi arranged or something to bring it to where I currently am as not sure my transport will drive to other hospital. Keep fingers crossed for me. I am hoping this may be a game changer for me. Not relying on it working as many other things not worked to date but I now have a little hope.
Good luck Dave
hooe it works out for you x
Many thanks. Just received the tablets now. Let us hope they work as well as the effects they have had in USA and rest of Europe.
Not sure if Helen already on Rezurock as she currently lives in Germany. If you are on Rezurock Helen what has your experience been on them?
I really hope that the resurock helps you , Dave . I think that it’s great that you are trying everything possible and not giving up. Either the resurock or something else will eventually help. Good luck and let us know how it goes . I hope that you can arrange transport and get it as quickly as possible . X
Hi Audrey,
It is watch this space now. Just took my first dose. I was a bit apprehensive of taking the medication as the only thing giving me hope currently and I am afraid it may make. No difference for me.
Sitting in my room in the clinic.
Thanks for sharing all that information about yourselves again. Of course I knew it from 'our beginnings ' but useful to have a recap. It's hard to believe it all. I suppose here would be the best place to recap mine... 2019 meningitis with facial paralysis, breast cancer, mastectomy, everything good- no need for radiotherapy, I was told in a different second opinion hospital - but here I was told, "you're getting it because we do everyone ". Then 21 leukaemia, caused by the radiotherapy. I was so I'll the Prof said they would not have given me stem cells in England. I would have died. It wasn't diagnosed early by my gp. She just said, but Frau Kotthoff you've always had low leukocytes... eventually I got a second opinion and got picked up by an ambulance and stayed in the clinic from May to the next February... mind boggling. The background to this was some poor psychotherapy, leaving my husband, then in the clinic getting, thank goodness, some very good therapy, and moved back to my husband on return from the clinic. I'm coming to terms with it all very gradually.
I don't have any exciting hobbies, since I've been ill I haven't touched my hobbies... pottery, embroidery, drawing, painting, calligraphy, reading, poetry. Quite sedentiary ... if that's a word?
I'm delighted to hear all that about the horses Dave and Beaglegirl. Such wonderful animals. A good friend works with them, teaches voltegieren? ... don't know what that is in English. My daughter did it for years with her, we went to a few competitions etc. They had a wonderful horse, "rocky". A very heavy footed horse with a very wide back ... very strong. Poor thing died suddenly... all years ago now, but he was wonderful, a real rock, calm, reliable... so sad, he died suddenly... I've never been close to an animal, we were in tears.
I'm not doing so well. But I was doing really well... the dermatologie treatment gave me such a boost with my newly won mobility. If I put my mind to it I could even walk and it looked almost normal. It lasted a few weeks, so much that I really thought I was winning. Unfortunately, my ulcers are getting worse on my feet again and I've got a slight infection on my chest. The Dr just ordered a blood test to see what the leukaemia values look like. I was a bit shocked, But they've probably got their eye on it. I hope they get the results quickly, I can tell it's worrying me. She backtracked and said it's only formality, standard practice, but still.
I'll tell poor hubby tomorrow.
Michelleanne, did you take antibiotics for your chest infection? The Dr said it's not lung gvhd cos that'd be on both sides. ... thank goodness.
I'd be curious to hear if your families do know each other, Dave and Beaglegirl. It's really wierd, a good English friend here.. her mum went to my mum's school and the families knew of each other. Fareham, Alverstoke area.
I'm on Facebook but I'd rather focus my screen time on our little group here. Fb is good if I have a specific gvhd question.
Night night all,
Love
Helen
Morning helen
so sorry you are feeling down , do you think the dark days make things worse ? I’ve had a few doses of antibiotics and steroids , now I’m taking a low dose of antibiotics all the time , I’ve had a ct scan so see what they say now , it would be weird if the families did know each other ❤️
Hi Helen,
sorry you are feeling so low but I do know where you are coming from. I think psycologically gvhd does so much damage especially when the recovery path does not seem to go the way you want it to. 1 step forward then 3 steps back.
I think you have had a harder time with your issues than I have had I didn’t think it was possible, and to be in a clinic for over a year must have also been so hard on you and your husband.
Michelleleeanne,
I hope the antibiotics start to improve things for you. Did they take pot luck with which antibiotic to use or was it determined by a blood test or biopsy. Whichever way I hope it does work as is so horrible with breathing issues.
with regard to our families knowing each other I think we are fairly certain they do not. We just know of quite a few same people and both spent at different times life in same places. It is a strange coincidence.
Hipefully over the next year we will all gradually improve, not just our health but also our minds and gradually come to terms with everything that has happened along life’s path. It will take a long time for most of us but we will get there bit by bit. Baby steps as they say.
Thinking about everyone . What you have all gone through and are going through would be non comprehensible to some people.
i just want you all to know that I’m thinking about you every step of your journey. Hopefully, when winter blows away and spring arrives, spirits will lift and all your positive natures will be fired up again.
Michelle, my daughter has been on daily antibiotics since she was discharged from hospital at the end of last year . They said that she will be on them for life . I do hope that they will prescribe them for you and they will help your breathing/ lung issues .
lots of hugs to all my friends . 🤗
Thank you all for your thoughts, mentally I'm not so bad, considering. It's the physical, chest infection plus losing my mobility again... the physical down after a physical up is always hard. That's it Dave, 1 step forwards 3 back at the moment ... it'll change.
The Prof stopped my regular ecp today... said he wants to see me in 3 weeks and will decide then when/if I need my next ecp. He says my immune system is too weak, hence the chest infection. Initially I was shocked and stood my ground but accepted it. I need to contact him as soon as I have problems.
Never a dull moment,
Love to you all. Thanks for being there
... Beaglegirl, we're with you, take a break if you need to, we can understand, we'll be here when it feels right. X
Hi Helen,
I don’t understand your doctor. Gvhd is caused by an overactive immune system so how can it be weak. Stopping Ecp could cause flare ups and make things worse. You usually stop a treatment for gvhd when things start to get better. However I did hear from my Ecp nurses that the doctors were planning taking patients off Ecp as they get rezurock. This has got to be for cost saving reasons as the method of actions on gvhd are completely different blocking different pathways. Anyway I guess who are we to question. Some times I don’t understand these decisions.
Hi all
thats my issue low immune system , they are now investigating why it’s not improving , I also have to much iron which can effect vital organs again 1 step forward and 3 back hopefully we’ll all turn the corner soon ❤️
Hi Michelleanne,
Do they regularly take blood from you and throw it away as this seems to be the process they generally follow to bring it down, and they say you often get this from many transfusions. Whatever I hope they get it down for you.
I believe they call the process venesection for reducing the iron.
Snippet from google
Venesection is the standard therapy for patients with hereditary haemochromatosis (HH), the most common iron-overload condition. Venesection typically involves the removal of 500 ml of blood (equivalent to 250 mg of iron) weekly from patients until normal iron levels are achieved.
Hi Dave
i have venesection every 2 months , I was having it monthly but it was too much for me as it was bringing my hemaglobin low then I couldn’t have anything done my iron level was 2100 now it’s down to 850 they want it to 500 I’ve been having this for just over a year , then it knocks me to pot can’t win really ❤️
Hi Michelle,
sorry it knocks you for 6 but it is very good you are near your target. Hopefully you feel a lot better as the level normalise. If you have done it for over a year you have worked hard to get it there. You should congratulate yourself on this achievement and making progress with your health. Congratulations from me.
Thanks Dave , I don’t feel like it , hopefully things will get better , I’ll be happier once I know about my ct scan x
About the 'stopping ' my ecp. I'm bearing with it till now, preparing my case for my next appointment in 2 and half weeks. The Prof has made a few good points, it's just not the way I would do it. At the moment I'm still within the old timetable. Unfortunately my feet are getting worse again daily... can't keep using cortisone. Mentally I'm ok. My chest infection is viral and seems to be slightly better. I'm resting as much as poss, need to get outside in the cold damp.
I'm crossing fingers for your ct Michelleanne, and your immunesystem. . For you too Dave about your rezurock when it comes.
Beaglegirl, I hope you've got some kind support from friends.
Audrey, I hope your daughter is doing ok. And you too, that you can find some peace somehow for you and your family.
Love to all,
Helen
Hi all
hope you get sorted out soon and get ease
hopefully the weather will get better , then we can get outside ❤️
Hi Everyone . You are all going through extremely challenging times in different ways . How I wish there was a magic cure but we all know that it’s trial and error and you must all try to stay positive . You all have great medical teams even though I know that at times you question their approach. It’s easy enough for me to say, when I’m not going through what you are all going through but please know that my heart is with you all.
Thank you all for asking about my daughter . She is doing as well as possible . Like Helen and Michelle - her lungs / chest have been damaged with all the treatment and at the moment, like you, Helen. She has a virus which is causing such a deep cough. Shes still having her 4 weekly immunoglobulin transfusions, on antibiotics for life and having her next bone marrow biopsy in 3 weeks ( always a tense time ).
However, she is doing well and so far has avoided gvhd. She started work last week which is a big step. I was worried that it was too soon but I think that she needs it for her mental health. Last year at this time I could never have imagined her being able to hold down a job. I’m hoping that telling you this will help you all to believe that things can improve.
sending love ❤️
Hi Everyone,
just wondered if anyone was online for a chat? As I’m struggling to cope . I’ve tried support lines but they just don’t understand. Everyday is agony and all I want is my boy back 💔 I’ve managed a bath today but I can’t bear sitting here on my own in silence. However, I have to try for my dogs as they are grieving too. I really don’t know what to get from the support lines maybe to re me they can get Martin back but I’m reality I know this isn’t going to happen. The pain is unbearable and the whatifs plays wreck with me every second of the day. I’m not sure if I should ring Rachel in the AN Telephone as she really does help when I speak to her x
Hi all
wow audrey your daughter is doing so well to get back to work it’s lovely to hear you must be very proud of her ❤️
beaglegirl I don’t know what to say to help you feel better , as I’ve never lost my husband I think it’s time if you get some help and ease talking to Rachel from AN then do it , stay strong ❤️
Hi Beaglegirl,
Just noticed your post as watching yet another film. Sorry you are finding it so hard but I guess really it is so inevitable. I think you should give Rachael from Anthony Nolan a ring as her words may help ease you a little and I know she would want to be there for you. However not sure they are still open tonight. A good soak in the bath sounds good a few minutes to try and relax a little and pamper yourself.
we are always here for support if you need us and I don’t see any of us disappearing that soon. We are like you suffering with our own issues but all wish we were not.
How are the dogs and horses, I bet they are still very confused and as you say grieving as the house will seem a lot emptier at the moment. What probably makes it worse is you being quite remote from everybody at the moment. I can also imagine at the moment also everything is such hard work when you want to be left alone and think of Martin. I too wish he would be back for you as you do not deserve to suffer. I wish I had previously met you both as you sound like you were a great couple and to see the warmth you shared between each other. I am sorry as I feel like I am rambling and I hope you can continue to chat to us when you feel you need it. You are helping us through everything as you write to us. Feel free to keep writing and we will try to be here as much as we can for you. If you want to chat about anything particular then let us know, or if you want a particular person to reply.
It is good you are still here with us.
Also rather than sitting at home in quiet can you not phone up a close friend and see if you can pop over to see him or her for a chat or meet up for a drink as chatting to someone close I am sure would help a bit. Or ask them to come to you if you had not the energy or will. I know if I was a close friend I would do this to try and support you and I am sure your close friends would be there for you so don’t be afraid to ask.
Hi B,
could you not pop down to the crown for a drink or a coffee and chat to your friend there. I am sure she would help. Give her a call if need be.
Hi Beaglegirl
Im so so sorry for your heartache and despair. I feel so much compassion and empathy as I am still grieving terribly for the loss of my son.
what I would say is the way you are feeling is normal- it’s grief at its worst. The despair and panic at the thought of never seeing your loved one again seems insurmountable . You can give into your grief just now . It’s such early days . I couldn’t eat, watch tv and was on autopilot for weeks . All I can say to help is that the horrendous ache will lesson a little over time .
Talk about Martin to us, to friends Talk to Martin .
i wish I could say or do more. When you are ready, you will be able to put one foot in front of the other and we’re all here for you. Xx
hi, I really hope someone is online. I’m having a really bad panic attack. I’ve been googling GCSF to prevent Neutropenic sepsis and it’s says it does. I’m now questioning whether I gave Martin what the doctors said. I know she said give one Saturday/Sunday then see you Wednesday. Oh god why didn’t they just keep daily injections as his Counts were fine he would have neutrophils and wouldn’t of been ill 💔💔💔
Hi Beaglegirl,
you cannot keep beating yourself up over this. You have done everything you possibly can for him and you know that as you loved him so much. If his life hung on having a gcsf injection or not the hospital would have not left it to you he would have been an inpatient at the time. Sepsis comes in when your body is too weak to fight and sometimes it can be fought off with antibiotics until your body can recover. If your body is too weak it is a lot more difficult and sometimes impossible.
when I had sepsis I was in intensive care fighting by my life the nurses monitor you 24 hours a day and you are given many different antibiotics to try help pull you through. They can’t always guarantee which one will work or if any will work.
it is better to try and remember Martin in the nice and good times you had together not the unfortunate times. Unfortunately you will need to accept he is no longer with us and not look for blame or fault. There is not always blame when unfortunately to say someone passed away.
I loved my grandparents so much and it hurt me when they passed but I could not blame anyone for thier passing as they had health issues and were old. I do blame myself afterwards for not spending enough time with them,
Please think of Martin in the memories of the happy times you spent together as that is what he would have wanted.