Thankyou for your support. I m finding I’m getting angry at those who are surviving and keep asking why Martin. It seems to be getting worse. The pain is unbearable and I feel so so alone. My friends message me sometimes on Facebook but they have their lives and are too busy to speak to me. I feel so needy and constantly checking my emails or messages on here just so I can hat to someone. Martin was the only one I needed. He looked after me no matter what and always made me feel better. I just want a hug off him which would make everything better. I can’t accept that that will never happen. Now I have to decide about funeral arrangements which my mum is doing but I have to decide on burial or cremation and it’s destroying me. I’m still in bed since last Tuesday and don’t feel I can go outside to have to come back to him not being here. I’m so so sorry for this heartbreaking post but I just don’t know what to do. I can’t live another day without him and my eyes are getting worse too 💔 Sowmthing else he said he would come with me when they were done 💔💔
Thank you for getting in touch Beaglegirl. You're doing just the right thing staying in bed as much as you need. You wont be in bed in 5 years. It's absolutely right for now. You're being kind to yourself. Make sure you've got enough food in and the necessaries.
You'll get the funeral behind you. Try to be able to get into a robot head that just gets stuff done, switch on/off.
You and Martin's love was so strong. Maybe you can feel it's warmth, it's still totally real, alive in you now.
We are with you. We can't take pain away. We are with you. I hope you can feel a big hug coming your way. It's a big bear one.
You can go on, not at the moment. At the moment you're doing well getting to the end of each hour, even treading water is exhausting. The pain you are suffering is immeasurable. Get under that duvet. Get the phone close. Maybe you've got an emergency plan, a family member or trusted friend. Try to reach out if/when it feels ok. People are understandably frightened of such big emotions, as well as suffering themselves too, but let them know what you need, help them to help you... they do want to be there for you, I'm sure.
I think my words are a bit too much for right now Beaglegirl. Everything at a pace that's comfortable. Bed is good for now, very good.
Ignore the unhelpful. It's all meant well.
So, dear Beaglegirl, I have no words to send you, just love,
I am so so sorry for the biggest loss of your life. I am sorry I have not sent my condolences sooner but I been struggling terribly with my gvhd and often wish I was not around with all this struggling and no progress. You sound like you had the ultimate relationship with your husband which is not always easy to find in life. It is something I have always looked for but never really found, so you have been so lucky to share this with someone. You need to look back at all the good memories you made together and the happy times you spent together.
do you have someone who can come and stay with you for a while someone you can talk to about whatever is on your mind as this can help to straighten things out in your mind. I know you really can’t go to anyone because of the horses and dogs unless you can get a dog sitter.
Your husband like you being miserable for too long, he would tell you to pick yourself up. For now as Helen says it is ok to lay in bed and think about everything and this will help you plan to move on.
Do you belong to any clubs where you could possibly spend some time with people from these you know as occupying your mind will help you a lot.
I am constantly alone at home with gvhd due to my current immobility and not occupying my mind has had an impact on my mental health recovery and you need to occupy yourself to help you through this.
soory I am not very good with this sort of thing but I do mean the best for you, and I am sorry if I upset you but I do not mean anything bad.
your husband was so lucky to have such a partner as you being so loyal and loving.
Talk and write as much as you need.
can I just add this. With one’s body not making enough neutrafils means there is still an issue with your body or stem cells because they are not making them correctly. It does not necessarily mean the AML has returned. The neutrafils fight off infection and your body makes more as it needs them. If your body cannot make them then your body will lose against infection. You can only prop up your body for a short time with injections to help produce them as forcing your body to produce them tires your body as well and in the end the injections will fail to work.
I'm thinking of you too. It must be so hard for you. I find the social isolation reeeally challenging myself and yet have family. You're doing so well even though it feels like the opposite I guess. Sorry to hear you've been struggling. I have been too. I don't know what it is. Hopefully the ECP this week will help.
I agree with you about the hobby, club, distraction, .. for the long run Dave. I couldn't cope without mine. The family need to lead their own lives too.
Beaglegirl.... it's something for in a year or two maybe. You're doing well under that duvet for now.... I've been thinking about you. I'm with you.
i was lovely to hear from you Dave , but sorry to hear you are struggling , I agree with a lot of what you said , I would say do want you feel you can do no pressure
I don’t have any clubs , I knit and read and walk when I feel like it , I feel really low at the moment so many hospital app for different things all about 40 miles away from home , as long as they sort things out 🤞love to you all
I can get that, it's gruelling all those appointments and every single one reminds us of the reason we're there, very grim. And I also get depressed in the sct outpatients because so many of us look like walking corpses and that really brings me down. My overnights are always sharing a room and often with someone without long to go.
On top of that, having the right pieces of paper for the right doctor, my notes... sometimes kind, sometimes unpleasant nurses which we are at the mercy of.
I'm off back in Monday morning. I hope the nurses in the ecp.... there's only two... I hope the difficult one is feeling good.
Love to you Michelleanne, we're together in this. Remember that when the going is hard.
it’s proving very difficult to keep going. I’m still struggling to accept that if the doctors said give him daily GcSf this wouldn’t have happened. He never had many and they worked. It’s going around in my head 24/7. The pain is getting worse as I will never be able to hug him or kiss him ever again. That’s what’s breaking me x
GCSF just stimulates your body to produce more blank stem cells that can be used by your body to make other blood cells used by your body such as red blood cells, plasma, playlets, neutrafils etc. however if your body is not functioning correctly or is very worn out due to all the treatment it has had the process is very very much slower or does not happen at all and with the body so low this is when infection can set in and when the body has no resources to fight then the enevotable happens. I had sepsis and was in icu as my neutrafils were so low but my body just had enough energy to pull me through. I was very very lucky. However I am now suffering very badly with gvhd.
please do not beat yourself up over what happened there was no one at fault. Also unfortunately nothing will change what has happened. I really feel for you as your love for your husband was do deep and you were lucky to have this and he has cert lucky to have you.
Your husband would love you to go on fighting strong with all those memories and times you spent together and all those happy times and not remembering or dwelling on bad times. He will want you to think of him positively.
please keep writing back with whatever comes into your head as we love you being in contact with us as we are all special people fighting the toughest battles of our lives.
it is so hard that Martin fought so hard to keep going , that he was tired and unwell
beaglegirl
please try to think of the happy times you have shared and the love you’ve had that will never go away , my friend took some old clothes of her husbands and got a memory bear made , she talks to him and hugs that
please keep chatting with us about anything we are in this battle together ❤️
Thankyou for your support. Im just so lonely and scared. Im still not out of bed and all I do is keep checking messages and emails for anyone who will talk to me. I feel that I’m not alone when I see that someone has replied on here. His that sounds sad as **** as I know Martin would call me a weirdo. It really does help a little though knowing others that understand. Dave I’m so sorry to hear you are struggling with the GVHD how far out of transplant are you?are you receiving any treatment at the moment? I’m sorry if you have already told me 🙈 I blame either my crappy eyes or me going off the rails. Michelle Thankyou for your support as always. I hope Helen and Audrey are okay too x
it does not matter how long you are in bed, as long as you are giving the dogs and horses lots of cuddles and talking to them and remembering the times you spent with Martin and them. They need you now more than ever as they are also very confused, with what is going on and mum spending so much time in bed and so sad. They can feel it and they sympathise. My ex wife I bought some thoroughbreds for years ago spent most of her time talking to her horses and they always understood and felt her mood.
i was first diagnosed with a cancer called bpcdn in Jan 2020. I had rounds of chemo to reduce my stem cells that had caused my bone marrow having 90% mutated cells. In Jan 2o22 I got a secondary cancer on my spine which temporarily paralysed my arms and legs. I could not move them for a few days while I waited for the high dose steroids to kick in and reduce the inflamation / swelling on my spine which were pushing on the nerves in my spine. This was very worrying as I never knew whether I would ever get the use of my limbs back. I then underwent radiotherapy to neutralise the cancer cells on my spine. This secondary cancer occurred as my body was so weak from the primary cancer to fight anything else off. I then had various chemos injected into the spine every few months to keep the cancer away. I then had further topics of chemo on my bone marrow reducing my immune system to nothing having gcsf injections to produce more stem cells to try and speed up the process of bringing up my nuetrafils. However the more chemo sessions I had the more my body was worn out from the chemo and it took longer and longer for my body to recover and get a healthy nuetrafil count of 7. On two occasions of chemo I ended up in icu with sepsis as my body was finding it difficult to fight off the infections. In June 2021 I had my sct which was such a horrible process where I was throughing up, coughing up blood from a damaged throat, diahorrea and could not eat hardly anything, I could not even manage with feeding tube as this caused me to through up. Due to my spinal compression and being in bed for so long I could no longer support my weight and had to re learn to walk. I went home just managing on a walker and managing to pull myself upstairs. Over the next 6 months I gradually built up. Bit more strength in my legs and could get up 2 stairs at a time. I got to the stage I was off all immunosuppressants such as cyclosporine so as per dr recommendation I started on my innocations that you need to have again. I had my covid and flu and this started an immune response that triggered my gvhd and I could not swallow due to my throat constricting and I was producing no saliva so was getting mouth infections and abysses. At the same time my shin / muscles / tendons started tightening in my legs making it nearly impossible to walk. My legs were still quite weak anyway as still recovering from my spinal compression this was all I need. The fatigue also set in , which I still have to this date along with the tight skin, which all started to years ago and has not budged a bit due to still having very active gvhd so I am a bit like you spending most of the day lying in bed or in a chair imapatiently waiting for the tightness to loosen a bit. I take steroids which sorted out my saliva and throat issues and I have something called Ecp which makes your immune system less active which sorted out gvhd of the liver which I also got. So at the moment my life is completely on hold as I cannot do anything until I can start getting my mobility back. My wife also could not handle it when I got gvhd so she also left as she then had to do more work around the house as previously before my cancer and gvhd I did everything as well as work. So has also been a bit of a struggle.
please understand I am not trying to make you feel bad or anything but to me the gvhd is worse than what the transplant was, and was never really told how bad gvhd can be and if you can ever fully recover from it. Also how risky the sct process is and the consequences that may occur as part of it.
Go and give the dogs a big hug and kiss from Martin.
Sitting in a chair or in bed has psycologically got to me as I have always been a busy person, walking, working, cooking, cleaning, gardening, diy etc I have never really liked walking or spending hours on the internet. However now I cannot do anything of the things I lived to do before due to my mobility issues. A new drug called rezurock is now available in the uk which may help me overcome my issues but due to some bureaucratic issues in nhs trusts is taking a bit longer to become available and I am hoping this may start off my recovery process as all currently on hold and phycologically I will not improve until I can go for walks again to clear my head.
Im so sorry Dave it’s sounds like your having a really tough time. Martin stared ECP treatment that’s why he had the line put back in. This is another thing I think about as they grew 2 bugs off the line that day too. Can I ask how old you are? Do you have any other family to support you at all? Let’s hope you can get the rezurock and finally gives you some relief x
I had a few pick lines in for my chemo and sct. I often got blockages in the line and often infections. Ocassionally they could not clear with antibiotics so they had to remove the lines and have new ones put in. This is the complication of lines you can always get infections through them as they are open to the outside environment. Luckily they are well trained in line procedures and dealing with infections in them. It is alway a risk with lines but they can always resolve infection issues in them be anti biotic and retesting and if that does not resolve they remove the infected line and put a new one in.
My closest sister is 1 hour away and she pops in about once a month to do some cleaning and washing My other sister is 3 hours away and I have not seen her for about a year as she has 3 kids to bring up as well as working. My father is a few hours away and he has distanced from the family since getting re married. My mother is having a few health issues herself with the possible onset of dimensia and is hours away and has mobility issues also. I was born in 1966 so am 57 years at present. Up until my cancer was quite healthy and occasionally go on walks say ten miles now can hardly go 22 yards.
It’s good that you have family that can help. I have my mum,dad and brother. Martins family are any help.His mum hasn’t seen him since he was a child and is always interested in herself and his brother and sister in law never came to visit him once since his last transplant. Families eh? They say you can’t choose them 🙈 I seen that you had some TB horses were they pets or did they race? I showjump so have warm bloods mainly we had bought a new horse box and we had planned to go to Spain jumping this year. I don’t think that will happen now as I could never do anything without Martin. 💔
Yes had TB years ago with my first wife. Spent hours with her and the horses at an equine centre where they were stabled. Had I total three TB’s but were pets really. One full grown bought from my stepfather burt was never broken. A second was an ex racehorse and the third an undergrown youngster. Was ver friendly with the owners and also spent a lot of time preparing thier indoor and outdoor arenas fore dressage, showjumping etc using tractor etc. I also became a BSJA judge but that was probably over 16 years ago now. I was never really a horse rider though it was more ex wife’s love of horses.,
it’s funny eight years ago I lived in Mallorca for about years and absolutely loved the Spanish way of life.
do you showjumping now? BSJA? Eventing? Any dressage? You never know going to Spain may still be a possibility as I guess there are always people off to Spain with horsesxshowjumping. Why Spain for show jumping ? I never knew it was such a big sport in Spain. Years ago we went to see lipizannas from Vienna at Wembley arena and they were amazing but I know that is more dressage from the Spanish riding school.
i remember when I drove to Cornwall to pick up my wife’s first pet tb from my ex stepfather I drove down in an old Bedford tk horse box that did not have a synchromesh gearbox so had do something called double de clutch it was a very bumpy ride also due to the number of hills and having to keep changing down the gearbox. However we got there and he was very happy to be in his new home. I bet you have lots of happy memories show jumping. Are your horses at livery? So I guess someone is looking after them while you are in bed?
I can feel the pain that you are going through as I have and am still going through the awful pain of losing someone .
my son was knocked down and killed by a speeding driver . That’s when our lives came crashing down. We had 35 wonderful years with our boy and then just like that , he was taken from us . This was two days after my daughter had her second transplant. The weeks after were a grief stricken haze of losing my son and being told to prepare for the worst with my daughter .
im telling you this , not to compare or take anything away from your grief , but to try and reassure you that you will put one foot in front of the other each day because that’s all that you can do. No words will make your grief any less and no amount of telling yourself that you can do this will help. I was like you and kept going over “ if only”’. If only my son had left 10 minutes earlier or later, if only he had accepted a lift etc. deep inside I know that this is not going to bring him back but I do keep going over the what ifs .
its a year and a half now since I lost my adored son. He had such a lovely nature and would do anything for anyone . I’m not going to pretend, each day is still very hard, I miss him dreadfully . But I try to go on for everyone else in my life . The “friends “ on this group are very special to me . I try to focus on others but I’m further down the line of grief than you. I talk to Paul every night and this helps me .
i hopE that you don’t mind me sharing my story. If I can help in any way, knowing just what it’s like to lose a loved one recently then please Message me in FB .
im sorry that I haven’t been around for a week or two.
I always think about you and know that life is not easy for any of you.
Michelle , I’m so sorry that you are feeling so low at the moment. This is so understandable as having to evolve life round hospital appointments and not feeling great would drag anyone down.
I’ve always been in awe of your positive attitude and love hearing about you having fun with the grandkids , walking with your husband etc. . All everyday things but very meaningful.
Helen and Dave - how I wish I could wave a magic wand and take away all the medical challenges that you have to face everyday . Some people would shut themselves away but you both share, help others and never give up. You really don’t probably realise how important you are to other members of the groups here with your advice , thoughts and sharing your journeys .
i feel honoured that you all let me contribute to this group and be in the “ friendship “ circle .
all I can say is Thankyou I lost all my so called friends through my illness , I have 2 good friends I ring one every couple of weeks but she is 91 so I don’t expect her to visit
I have no brothers or sisters my mam died last year and my dad died years ago , I have brother in law as one died just before Christmas , I have a wonderful husband who I have been with for over 40 years our daughters are married we have 2 granddaughters and 1 grandson who I adore and a s little Scottie dog , he doesn’t leave my side especially when I have a spell in bed
beaglegirl your dogs and horses will be wondering what’s going on , I believe they will be grieving too , give yourselve time we have all gone through a tough , we are all survivors of this horrible disease , Dave I went through the same thing with my throat and still have it
you are all very special and you help me to cope a great deal keep strong and talking big bear hugs and kisses ❤️
Save Wow a BSJA judge!! Can I ask which area you were in? I’m Area 51 Cornwall. However I lived to albrighton in Shropshire to for a young rider position at Robert Lickleys @ Kingswood and that’s where I met my angel Martin. Spain hold tours where you can jump over 6/8wks to get away from our winters. It’s a lot of money but I always wanted to go in the sunshine tour Martin and I always said we would go if we could get the money together.
Auds I’m so sorry about your son that is absolutely heartbreaking. Why is life so cruel for some and not for others? Yes the what ifs are sending me crazy. I just want him back so much. I would live on the streets if I could have him back I would do anything. The thought of a future alone and without him though is really affecting me. I have my parents but it’s different. I have no one to share anything with, no one to hug and kiss. That’s what I can’t come to terms with 💔 let me know how to find you on Facebook and I’ll add you if your allowed to I’m not sure about the rules on here x
I am well out of touch o the BSJA jumping scene. I was very junior to this roll when I did it and I only think I did it for a couple of years. I was living in Clevedon at the time near Weston super mare and used to judge mainly at wood spring equestrian centre. Sorry I can’t remember what area that was in as was a long time ago and I don’t know if it still exists as an equestrian centre now. I did used to also love the horse all they played there, I could not believe the ability of the young teens playing it. However I did spend my younger years in Cornwall. After moving back from Mallorca I moved to swindon area as house prices were cheap and was ideal central location for me to look for work after returning to UK. Funny my father lives in Shropshire near Shrewsbury and my mother is still in Cornwall. I loved living in the sun but after getting gvhd they tell you it’s not good to spend too much time in the sun. I did become quite fluid in Spanish after living in Mallorca for 8 years.
It is a shame for us all we have lost so many friends and family along our life journeys and also with cancers etc has kept more people away. I too spent most of my time with my wife when I was married and we spent all our time together and you cut out a lot of other contacts then later on we find we are more alone. Life can be such a striluggle but it is always nice to do it with Simone at your side, who you can rely on to be there. We must all strive and fight on making new friends and try to enjoy the time we have. At present I find it hard but one day soon I know I will improve and get my strength back and start living again and do the things I enjoying.
looking at the Kingswwod web site it is a very professionally run concern. Wood spring where I judged mainly was nothing ever like this. It was really a hobby of one family who never lived on site and was a part time hobby. They did not really through much resources at it at all. They I don’t believe even had a web site. I guess it may have been possible you visited it in the past as many riders travelled here for especially the three day senior jumping. These were always the most popular.
I hope your feet and wounds are improving more all the time. I believe your mobility was getting better I hope it still is. I believe you had discarded your wheelchair and frame and were managing the stairs more easily.
Nothing much has changed for me except for the promise of rezurock but I am yet to see it yet. I really do hope it does help to ease up my scleroderma and fasci so I can start being a bit more mobile. When I went for my consultants appointment on Wednesday and he told me he would prescribe rezurock there and then as they had supplies in the hospital I was in tears of emotion and could not speak for a while as finally a treatment that may possibly help me after years of wasting my life. It is so hard. Then when he went to order it after all necessary paperwork done the pharmacy said you haven’t crossed the T,s. How let down I felt. The consultant said he would get it across to my Ecp appointment tomorrow. I asked if he could email me when he had arranged it. I have heard nothing back so I guess nothing has been done. I really want to get out this mess I am in but it always seems things are against me. I keep my fingers crossed for tomorrow but don’t hold much hope.
Dave my goodness it’s a small world isn’t it. Whereabouts does your mum live in Cornwall? We live just outside of Lanhydrock Nr Lostwithiel. We live on a small holding with our horses/3 pet sheep and our dogs x
so sorry you are still suffering with your mouth issues. How far are you out from sct now? As I said I got gvhd 6 months out and my first symptoms we’re really dry mouth due to lack of saliva and I ended up getting sores in my mouth due to lack of lubrication and it made it very difficult to consume food due to lack of saliva. The doctor just told me to drink lots of water when I ate, but it was never the same and everything tasted so uninviting. I also got a swollen throat and could not swallow most of the pills I had. Luckily after a couple of months taking steroid mouthwash and steroids the throat eased up and the saliva started to gradually come back. In the USA if they get constricted throats from gvhd they stretch the throat and it seems to work.
what meds are you on for your gvhd issues? It may be worth asking your doctor if you can go on Rezurock which is newly available in England and is really the first FDA drug approved for gvhd. It is an all round treatment for all gvhd symptoms and it works by bringing down inflammation and thus reducing the fibrosis which causes the damage.
I spent most of my child and teenage life in Lostwithiel and have many friends there but have been bad and not contacted them for many years. My mum remarried years ago and lived on a small holding Nr lanlivery with her ex husband and unfortunately he died and my mother then moved to Par. How long have you lived in Lostwithiel area I moved away more than 20 years ago now but do miss the life I had there and often think of returning to Cornwall. However I need to sort myself out first before I decide what I am going to do next. Forgot to mention that years ago my sister lived in a rented cottage from the Lanhydrock estate. I used to love walking around lanhydrock and resorts and often walked it up the river from Lostwithiel. I loved the days growing up there and my first jobs in Cornwall. What a very small world
im 3 years bmt I’ve got steroid mouth wash and that is helping I have very dry mouth and throat and crusty kidneys , so I have to drink plenty
I’m still on all my meds my proff wants me on them for 5 years ,I’ve been for a ct scan today to see why my chest is always bad so see what that shows ❤️
OMG this is so wierd. I grew up in Par and then moved to lanlivery about 15yra ago although mum and dad owned the land years before me coming her.Mum and dad still live in Par. Im too scared to ask where your mum lives in Par as I bet my mum knows her 🙈
Comments
Hi Helen,
Thankyou for your support. I m finding I’m getting angry at those who are surviving and keep asking why Martin. It seems to be getting worse. The pain is unbearable and I feel so so alone. My friends message me sometimes on Facebook but they have their lives and are too busy to speak to me. I feel so needy and constantly checking my emails or messages on here just so I can hat to someone. Martin was the only one I needed. He looked after me no matter what and always made me feel better. I just want a hug off him which would make everything better. I can’t accept that that will never happen. Now I have to decide about funeral arrangements which my mum is doing but I have to decide on burial or cremation and it’s destroying me. I’m still in bed since last Tuesday and don’t feel I can go outside to have to come back to him not being here. I’m so so sorry for this heartbreaking post but I just don’t know what to do. I can’t live another day without him and my eyes are getting worse too 💔 Sowmthing else he said he would come with me when they were done 💔💔
Thank you for getting in touch Beaglegirl. You're doing just the right thing staying in bed as much as you need. You wont be in bed in 5 years. It's absolutely right for now. You're being kind to yourself. Make sure you've got enough food in and the necessaries.
You'll get the funeral behind you. Try to be able to get into a robot head that just gets stuff done, switch on/off.
You and Martin's love was so strong. Maybe you can feel it's warmth, it's still totally real, alive in you now.
We are with you. We can't take pain away. We are with you. I hope you can feel a big hug coming your way. It's a big bear one.
You can go on, not at the moment. At the moment you're doing well getting to the end of each hour, even treading water is exhausting. The pain you are suffering is immeasurable. Get under that duvet. Get the phone close. Maybe you've got an emergency plan, a family member or trusted friend. Try to reach out if/when it feels ok. People are understandably frightened of such big emotions, as well as suffering themselves too, but let them know what you need, help them to help you... they do want to be there for you, I'm sure.
I think my words are a bit too much for right now Beaglegirl. Everything at a pace that's comfortable. Bed is good for now, very good.
Ignore the unhelpful. It's all meant well.
So, dear Beaglegirl, I have no words to send you, just love,
Helen
🩷🩷🩷🩷🩷
Hi Beaglegirl,
I am so so sorry for the biggest loss of your life. I am sorry I have not sent my condolences sooner but I been struggling terribly with my gvhd and often wish I was not around with all this struggling and no progress. You sound like you had the ultimate relationship with your husband which is not always easy to find in life. It is something I have always looked for but never really found, so you have been so lucky to share this with someone. You need to look back at all the good memories you made together and the happy times you spent together.
do you have someone who can come and stay with you for a while someone you can talk to about whatever is on your mind as this can help to straighten things out in your mind. I know you really can’t go to anyone because of the horses and dogs unless you can get a dog sitter.
Your husband like you being miserable for too long, he would tell you to pick yourself up. For now as Helen says it is ok to lay in bed and think about everything and this will help you plan to move on.
Do you belong to any clubs where you could possibly spend some time with people from these you know as occupying your mind will help you a lot.
I am constantly alone at home with gvhd due to my current immobility and not occupying my mind has had an impact on my mental health recovery and you need to occupy yourself to help you through this.
soory I am not very good with this sort of thing but I do mean the best for you, and I am sorry if I upset you but I do not mean anything bad.
your husband was so lucky to have such a partner as you being so loyal and loving.
Talk and write as much as you need.
can I just add this. With one’s body not making enough neutrafils means there is still an issue with your body or stem cells because they are not making them correctly. It does not necessarily mean the AML has returned. The neutrafils fight off infection and your body makes more as it needs them. If your body cannot make them then your body will lose against infection. You can only prop up your body for a short time with injections to help produce them as forcing your body to produce them tires your body as well and in the end the injections will fail to work.
My thoughts are with you.
You've put it well Dave.
I'm thinking of you too. It must be so hard for you. I find the social isolation reeeally challenging myself and yet have family. You're doing so well even though it feels like the opposite I guess. Sorry to hear you've been struggling. I have been too. I don't know what it is. Hopefully the ECP this week will help.
I agree with you about the hobby, club, distraction, .. for the long run Dave. I couldn't cope without mine. The family need to lead their own lives too.
Beaglegirl.... it's something for in a year or two maybe. You're doing well under that duvet for now.... I've been thinking about you. I'm with you.
I hope you're doing ok Michelleanne.
Love to all,
Helen
Hi all
i was lovely to hear from you Dave , but sorry to hear you are struggling , I agree with a lot of what you said , I would say do want you feel you can do no pressure
I don’t have any clubs , I knit and read and walk when I feel like it , I feel really low at the moment so many hospital app for different things all about 40 miles away from home , as long as they sort things out 🤞love to you all
Hi Michelleanne,
I can get that, it's gruelling all those appointments and every single one reminds us of the reason we're there, very grim. And I also get depressed in the sct outpatients because so many of us look like walking corpses and that really brings me down. My overnights are always sharing a room and often with someone without long to go.
On top of that, having the right pieces of paper for the right doctor, my notes... sometimes kind, sometimes unpleasant nurses which we are at the mercy of.
I'm off back in Monday morning. I hope the nurses in the ecp.... there's only two... I hope the difficult one is feeling good.
Love to you Michelleanne, we're together in this. Remember that when the going is hard.
Love to all,
Helen
Hi helen
its so true , sometimes I just want to be normal and do normal things , it’s just hard work
I hope you get through next week with lovely nurses
keep strong ❤️love to you xx
Hi Everyone,
it’s proving very difficult to keep going. I’m still struggling to accept that if the doctors said give him daily GcSf this wouldn’t have happened. He never had many and they worked. It’s going around in my head 24/7. The pain is getting worse as I will never be able to hug him or kiss him ever again. That’s what’s breaking me x
Hi Beable girl,
GCSF just stimulates your body to produce more blank stem cells that can be used by your body to make other blood cells used by your body such as red blood cells, plasma, playlets, neutrafils etc. however if your body is not functioning correctly or is very worn out due to all the treatment it has had the process is very very much slower or does not happen at all and with the body so low this is when infection can set in and when the body has no resources to fight then the enevotable happens. I had sepsis and was in icu as my neutrafils were so low but my body just had enough energy to pull me through. I was very very lucky. However I am now suffering very badly with gvhd.
please do not beat yourself up over what happened there was no one at fault. Also unfortunately nothing will change what has happened. I really feel for you as your love for your husband was do deep and you were lucky to have this and he has cert lucky to have you.
Your husband would love you to go on fighting strong with all those memories and times you spent together and all those happy times and not remembering or dwelling on bad times. He will want you to think of him positively.
please keep writing back with whatever comes into your head as we love you being in contact with us as we are all special people fighting the toughest battles of our lives.
Hi all
dave I totally agree with what you have said
it is so hard that Martin fought so hard to keep going , that he was tired and unwell
beaglegirl
please try to think of the happy times you have shared and the love you’ve had that will never go away , my friend took some old clothes of her husbands and got a memory bear made , she talks to him and hugs that
please keep chatting with us about anything we are in this battle together ❤️
Hi Michelle and Dave,
Thankyou for your support. Im just so lonely and scared. Im still not out of bed and all I do is keep checking messages and emails for anyone who will talk to me. I feel that I’m not alone when I see that someone has replied on here. His that sounds sad as **** as I know Martin would call me a weirdo. It really does help a little though knowing others that understand. Dave I’m so sorry to hear you are struggling with the GVHD how far out of transplant are you?are you receiving any treatment at the moment? I’m sorry if you have already told me 🙈 I blame either my crappy eyes or me going off the rails. Michelle Thankyou for your support as always. I hope Helen and Audrey are okay too x
Hi Beaglegirl,
it does not matter how long you are in bed, as long as you are giving the dogs and horses lots of cuddles and talking to them and remembering the times you spent with Martin and them. They need you now more than ever as they are also very confused, with what is going on and mum spending so much time in bed and so sad. They can feel it and they sympathise. My ex wife I bought some thoroughbreds for years ago spent most of her time talking to her horses and they always understood and felt her mood.
i was first diagnosed with a cancer called bpcdn in Jan 2020. I had rounds of chemo to reduce my stem cells that had caused my bone marrow having 90% mutated cells. In Jan 2o22 I got a secondary cancer on my spine which temporarily paralysed my arms and legs. I could not move them for a few days while I waited for the high dose steroids to kick in and reduce the inflamation / swelling on my spine which were pushing on the nerves in my spine. This was very worrying as I never knew whether I would ever get the use of my limbs back. I then underwent radiotherapy to neutralise the cancer cells on my spine. This secondary cancer occurred as my body was so weak from the primary cancer to fight anything else off. I then had various chemos injected into the spine every few months to keep the cancer away. I then had further topics of chemo on my bone marrow reducing my immune system to nothing having gcsf injections to produce more stem cells to try and speed up the process of bringing up my nuetrafils. However the more chemo sessions I had the more my body was worn out from the chemo and it took longer and longer for my body to recover and get a healthy nuetrafil count of 7. On two occasions of chemo I ended up in icu with sepsis as my body was finding it difficult to fight off the infections. In June 2021 I had my sct which was such a horrible process where I was throughing up, coughing up blood from a damaged throat, diahorrea and could not eat hardly anything, I could not even manage with feeding tube as this caused me to through up. Due to my spinal compression and being in bed for so long I could no longer support my weight and had to re learn to walk. I went home just managing on a walker and managing to pull myself upstairs. Over the next 6 months I gradually built up. Bit more strength in my legs and could get up 2 stairs at a time. I got to the stage I was off all immunosuppressants such as cyclosporine so as per dr recommendation I started on my innocations that you need to have again. I had my covid and flu and this started an immune response that triggered my gvhd and I could not swallow due to my throat constricting and I was producing no saliva so was getting mouth infections and abysses. At the same time my shin / muscles / tendons started tightening in my legs making it nearly impossible to walk. My legs were still quite weak anyway as still recovering from my spinal compression this was all I need. The fatigue also set in , which I still have to this date along with the tight skin, which all started to years ago and has not budged a bit due to still having very active gvhd so I am a bit like you spending most of the day lying in bed or in a chair imapatiently waiting for the tightness to loosen a bit. I take steroids which sorted out my saliva and throat issues and I have something called Ecp which makes your immune system less active which sorted out gvhd of the liver which I also got. So at the moment my life is completely on hold as I cannot do anything until I can start getting my mobility back. My wife also could not handle it when I got gvhd so she also left as she then had to do more work around the house as previously before my cancer and gvhd I did everything as well as work. So has also been a bit of a struggle.
please understand I am not trying to make you feel bad or anything but to me the gvhd is worse than what the transplant was, and was never really told how bad gvhd can be and if you can ever fully recover from it. Also how risky the sct process is and the consequences that may occur as part of it.
Go and give the dogs a big hug and kiss from Martin.
Sitting in a chair or in bed has psycologically got to me as I have always been a busy person, walking, working, cooking, cleaning, gardening, diy etc I have never really liked walking or spending hours on the internet. However now I cannot do anything of the things I lived to do before due to my mobility issues. A new drug called rezurock is now available in the uk which may help me overcome my issues but due to some bureaucratic issues in nhs trusts is taking a bit longer to become available and I am hoping this may start off my recovery process as all currently on hold and phycologically I will not improve until I can go for walks again to clear my head.
Im so sorry Dave it’s sounds like your having a really tough time. Martin stared ECP treatment that’s why he had the line put back in. This is another thing I think about as they grew 2 bugs off the line that day too. Can I ask how old you are? Do you have any other family to support you at all? Let’s hope you can get the rezurock and finally gives you some relief x
Hi,
I had a few pick lines in for my chemo and sct. I often got blockages in the line and often infections. Ocassionally they could not clear with antibiotics so they had to remove the lines and have new ones put in. This is the complication of lines you can always get infections through them as they are open to the outside environment. Luckily they are well trained in line procedures and dealing with infections in them. It is alway a risk with lines but they can always resolve infection issues in them be anti biotic and retesting and if that does not resolve they remove the infected line and put a new one in.
My closest sister is 1 hour away and she pops in about once a month to do some cleaning and washing My other sister is 3 hours away and I have not seen her for about a year as she has 3 kids to bring up as well as working. My father is a few hours away and he has distanced from the family since getting re married. My mother is having a few health issues herself with the possible onset of dimensia and is hours away and has mobility issues also. I was born in 1966 so am 57 years at present. Up until my cancer was quite healthy and occasionally go on walks say ten miles now can hardly go 22 yards.
It’s good that you have family that can help. I have my mum,dad and brother. Martins family are any help.His mum hasn’t seen him since he was a child and is always interested in herself and his brother and sister in law never came to visit him once since his last transplant. Families eh? They say you can’t choose them 🙈 I seen that you had some TB horses were they pets or did they race? I showjump so have warm bloods mainly we had bought a new horse box and we had planned to go to Spain jumping this year. I don’t think that will happen now as I could never do anything without Martin. 💔
Hi,
Yes had TB years ago with my first wife. Spent hours with her and the horses at an equine centre where they were stabled. Had I total three TB’s but were pets really. One full grown bought from my stepfather burt was never broken. A second was an ex racehorse and the third an undergrown youngster. Was ver friendly with the owners and also spent a lot of time preparing thier indoor and outdoor arenas fore dressage, showjumping etc using tractor etc. I also became a BSJA judge but that was probably over 16 years ago now. I was never really a horse rider though it was more ex wife’s love of horses.,
it’s funny eight years ago I lived in Mallorca for about years and absolutely loved the Spanish way of life.
do you showjumping now? BSJA? Eventing? Any dressage? You never know going to Spain may still be a possibility as I guess there are always people off to Spain with horsesxshowjumping. Why Spain for show jumping ? I never knew it was such a big sport in Spain. Years ago we went to see lipizannas from Vienna at Wembley arena and they were amazing but I know that is more dressage from the Spanish riding school.
i remember when I drove to Cornwall to pick up my wife’s first pet tb from my ex stepfather I drove down in an old Bedford tk horse box that did not have a synchromesh gearbox so had do something called double de clutch it was a very bumpy ride also due to the number of hills and having to keep changing down the gearbox. However we got there and he was very happy to be in his new home. I bet you have lots of happy memories show jumping. Are your horses at livery? So I guess someone is looking after them while you are in bed?
Hi Beaglegirl
i am so sorry to hear about Martin.
I can feel the pain that you are going through as I have and am still going through the awful pain of losing someone .
my son was knocked down and killed by a speeding driver . That’s when our lives came crashing down. We had 35 wonderful years with our boy and then just like that , he was taken from us . This was two days after my daughter had her second transplant. The weeks after were a grief stricken haze of losing my son and being told to prepare for the worst with my daughter .
im telling you this , not to compare or take anything away from your grief , but to try and reassure you that you will put one foot in front of the other each day because that’s all that you can do. No words will make your grief any less and no amount of telling yourself that you can do this will help. I was like you and kept going over “ if only”’. If only my son had left 10 minutes earlier or later, if only he had accepted a lift etc. deep inside I know that this is not going to bring him back but I do keep going over the what ifs .
its a year and a half now since I lost my adored son. He had such a lovely nature and would do anything for anyone . I’m not going to pretend, each day is still very hard, I miss him dreadfully . But I try to go on for everyone else in my life . The “friends “ on this group are very special to me . I try to focus on others but I’m further down the line of grief than you. I talk to Paul every night and this helps me .
i hopE that you don’t mind me sharing my story. If I can help in any way, knowing just what it’s like to lose a loved one recently then please Message me in FB .
sending lots of hugs and special thoughts . ❤️❤️
Hi Michelle, Helen and Dave
im sorry that I haven’t been around for a week or two.
I always think about you and know that life is not easy for any of you.
Michelle , I’m so sorry that you are feeling so low at the moment. This is so understandable as having to evolve life round hospital appointments and not feeling great would drag anyone down.
I’ve always been in awe of your positive attitude and love hearing about you having fun with the grandkids , walking with your husband etc. . All everyday things but very meaningful.
Helen and Dave - how I wish I could wave a magic wand and take away all the medical challenges that you have to face everyday . Some people would shut themselves away but you both share, help others and never give up. You really don’t probably realise how important you are to other members of the groups here with your advice , thoughts and sharing your journeys .
i feel honoured that you all let me contribute to this group and be in the “ friendship “ circle .
Sending all my positive wishes and hugs . ❤️❤️
Hi all
all I can say is Thankyou I lost all my so called friends through my illness , I have 2 good friends I ring one every couple of weeks but she is 91 so I don’t expect her to visit
I have no brothers or sisters my mam died last year and my dad died years ago , I have brother in law as one died just before Christmas , I have a wonderful husband who I have been with for over 40 years our daughters are married we have 2 granddaughters and 1 grandson who I adore and a s little Scottie dog , he doesn’t leave my side especially when I have a spell in bed
beaglegirl your dogs and horses will be wondering what’s going on , I believe they will be grieving too , give yourselve time we have all gone through a tough , we are all survivors of this horrible disease , Dave I went through the same thing with my throat and still have it
you are all very special and you help me to cope a great deal keep strong and talking big bear hugs and kisses ❤️
Save Wow a BSJA judge!! Can I ask which area you were in? I’m Area 51 Cornwall. However I lived to albrighton in Shropshire to for a young rider position at Robert Lickleys @ Kingswood and that’s where I met my angel Martin. Spain hold tours where you can jump over 6/8wks to get away from our winters. It’s a lot of money but I always wanted to go in the sunshine tour Martin and I always said we would go if we could get the money together.
Auds I’m so sorry about your son that is absolutely heartbreaking. Why is life so cruel for some and not for others? Yes the what ifs are sending me crazy. I just want him back so much. I would live on the streets if I could have him back I would do anything. The thought of a future alone and without him though is really affecting me. I have my parents but it’s different. I have no one to share anything with, no one to hug and kiss. That’s what I can’t come to terms with 💔 let me know how to find you on Facebook and I’ll add you if your allowed to I’m not sure about the rules on here x
Hi eagle girl,
I am well out of touch o the BSJA jumping scene. I was very junior to this roll when I did it and I only think I did it for a couple of years. I was living in Clevedon at the time near Weston super mare and used to judge mainly at wood spring equestrian centre. Sorry I can’t remember what area that was in as was a long time ago and I don’t know if it still exists as an equestrian centre now. I did used to also love the horse all they played there, I could not believe the ability of the young teens playing it. However I did spend my younger years in Cornwall. After moving back from Mallorca I moved to swindon area as house prices were cheap and was ideal central location for me to look for work after returning to UK. Funny my father lives in Shropshire near Shrewsbury and my mother is still in Cornwall. I loved living in the sun but after getting gvhd they tell you it’s not good to spend too much time in the sun. I did become quite fluid in Spanish after living in Mallorca for 8 years.
It is a shame for us all we have lost so many friends and family along our life journeys and also with cancers etc has kept more people away. I too spent most of my time with my wife when I was married and we spent all our time together and you cut out a lot of other contacts then later on we find we are more alone. Life can be such a striluggle but it is always nice to do it with Simone at your side, who you can rely on to be there. We must all strive and fight on making new friends and try to enjoy the time we have. At present I find it hard but one day soon I know I will improve and get my strength back and start living again and do the things I enjoying.
Hi Beaglegirl,
looking at the Kingswwod web site it is a very professionally run concern. Wood spring where I judged mainly was nothing ever like this. It was really a hobby of one family who never lived on site and was a part time hobby. They did not really through much resources at it at all. They I don’t believe even had a web site. I guess it may have been possible you visited it in the past as many riders travelled here for especially the three day senior jumping. These were always the most popular.
Hi Helen,
I hope your feet and wounds are improving more all the time. I believe your mobility was getting better I hope it still is. I believe you had discarded your wheelchair and frame and were managing the stairs more easily.
Nothing much has changed for me except for the promise of rezurock but I am yet to see it yet. I really do hope it does help to ease up my scleroderma and fasci so I can start being a bit more mobile. When I went for my consultants appointment on Wednesday and he told me he would prescribe rezurock there and then as they had supplies in the hospital I was in tears of emotion and could not speak for a while as finally a treatment that may possibly help me after years of wasting my life. It is so hard. Then when he went to order it after all necessary paperwork done the pharmacy said you haven’t crossed the T,s. How let down I felt. The consultant said he would get it across to my Ecp appointment tomorrow. I asked if he could email me when he had arranged it. I have heard nothing back so I guess nothing has been done. I really want to get out this mess I am in but it always seems things are against me. I keep my fingers crossed for tomorrow but don’t hold much hope.
Dave my goodness it’s a small world isn’t it. Whereabouts does your mum live in Cornwall? We live just outside of Lanhydrock Nr Lostwithiel. We live on a small holding with our horses/3 pet sheep and our dogs x
Hi Michelleleane ,
so sorry you are still suffering with your mouth issues. How far are you out from sct now? As I said I got gvhd 6 months out and my first symptoms we’re really dry mouth due to lack of saliva and I ended up getting sores in my mouth due to lack of lubrication and it made it very difficult to consume food due to lack of saliva. The doctor just told me to drink lots of water when I ate, but it was never the same and everything tasted so uninviting. I also got a swollen throat and could not swallow most of the pills I had. Luckily after a couple of months taking steroid mouthwash and steroids the throat eased up and the saliva started to gradually come back. In the USA if they get constricted throats from gvhd they stretch the throat and it seems to work.
what meds are you on for your gvhd issues? It may be worth asking your doctor if you can go on Rezurock which is newly available in England and is really the first FDA drug approved for gvhd. It is an all round treatment for all gvhd symptoms and it works by bringing down inflammation and thus reducing the fibrosis which causes the damage.
i hope it resolves soon for you
Hi Beaglegirl,
I spent most of my child and teenage life in Lostwithiel and have many friends there but have been bad and not contacted them for many years. My mum remarried years ago and lived on a small holding Nr lanlivery with her ex husband and unfortunately he died and my mother then moved to Par. How long have you lived in Lostwithiel area I moved away more than 20 years ago now but do miss the life I had there and often think of returning to Cornwall. However I need to sort myself out first before I decide what I am going to do next. Forgot to mention that years ago my sister lived in a rented cottage from the Lanhydrock estate. I used to love walking around lanhydrock and resorts and often walked it up the river from Lostwithiel. I loved the days growing up there and my first jobs in Cornwall. What a very small world
Hi dave
im 3 years bmt I’ve got steroid mouth wash and that is helping I have very dry mouth and throat and crusty kidneys , so I have to drink plenty
I’m still on all my meds my proff wants me on them for 5 years ,I’ve been for a ct scan today to see why my chest is always bad so see what that shows ❤️
OMG this is so wierd. I grew up in Par and then moved to lanlivery about 15yra ago although mum and dad owned the land years before me coming her.Mum and dad still live in Par. Im too scared to ask where your mum lives in Par as I bet my mum knows her 🙈