I just wanted to get in touch and let you know that we here at Anthony Nolan we offer our telephone emotional support service, not only to patients but families as well..
Hi Liam,
And hallo Michelleanne and Audrey,
thank you very much for getting in touch Liam. I live abroad so the Hotline number doesn’t work for me.
I’ve given the number to my mum but she said it’s all a bit too much for her at the moment and she’ll be in touch when she’s ready. She was grateful to get the number though and was able to make a small donation.
As you’ve seen from this thread, it really is a fantastic resource for emotional support. It’s helped me enormously and will continue to I’m sure. I don’t know how people in the past got through this without the chance of making contact and sharing with other sufferers.
Best wishes,
Helen
Hello Michelle and Audrey,
I hope we are able to enjoy our blessings in the next few days. They are so few but all the more special for it.
I seem to be taking steps back at the moment. I can only be in the now because everything else just annoys me.
You are blessings to me and for that I’m very grateful, I wish you peaceful holidays,
Helen
Hi helen
we will count our blessings , in our own way and in anyway we can , try not to look to far forward , enjoy one day at a time ,
I know what you mean about things been annoying I feel like that sometimes ,
im sat thinking about my donor , wondering what he’s doing , and what a wonderful thing he did for me .
you are a blessing too and a great help
i wish you you and yours a very happy and peaceful time
take care I’m here if needed
best wishes
michelleanne
Hi Michelle, Helen and Dave,
Thank you all for your kind, supportive messages over the past months . I feel as if I have gained such good friends on this site.
Helen, I’m so sorry that you are struggling just now. As an onlooker and also very involved with my daughter, I see that this illness is like a roller coaster. One day at a time and I hope that the roller coaster flips up for you again very soon.
Im sending lots of Christmas wishes for everyone and hope that you all manage to enjoy the day.
my daughter is at the start of her recovery. I worry but I can’t believe that we’re all going to have Christmas together. You are all in my thoughts.
Best Wishes
Audrey
Hi audrey
You sound so much brighter than you have in the past few months , I too feel I’ve made some amazing friends on here ,
enjoy you’re Christmas I wish you lots of happiness , love
I’m always here if needed
take care
michelleanne
H Audrey,
I am so glad your daughter is making progress. I understand it may be slow but it is progress. A long way from where she was in hospital originally and you also now sound a bit more upbeat.
I am a bit like Helen at the moment ie very up and down. This is a result of the gvhd not so much from the chemotherapy or the cancer, it is a side effect that many get as a result of the bone marrow transplant and can go on for a long time and can also fare up when not expected and it just seems to go on with no real notice of improvement in your condition, however it is supposed to get better in the long run. It started for me 6 months approximately after transplant which I did not expect. Some persons do get little or no side effects. Anyway it is good you have your daughter at home for Xmas so she can feel re energised being around the kids. Hopefully day by day she will improve. Baby steps as they say.
Hi Everyone
I hope that you all had the best Christmas possible and I wish you all a happy and healthy New Year.
Helen and Dave, I have been thinking about you and so hope that the gvhd eases off a bit soon and that you both take more forward steps in the next few weeks.
My daughter managed to spend Christmas with her little boys which was wonderful. Unfortunately she is now back in hospital but hopefully it won’t be a long stay. She had a heavy cold which went into her chest. Her lungs are still weak from the pneumonia and she also developed conjunctivitis. Then her temperature spiked so it was back in to hospital. They’ve got her on intravenous antibiotics and she’s been given bloods and platelets so she is being taken good care of. Like yourselves, Dave and Helen, it’s the gvhd thAt’s causing her ongoing problems. She had very little appetite and what she is eating is just padding through her.
How I admire you all, the way that you have battled through the transplants and continue to deal with ongoing symptoms.
I really hope that you all have a good start to the year and want to say again how grateful I M to have discovered this site and “met” all if you who I feel have become my friends.
Hi audrey
So sorry you’re daughter is back in hospital , I hope she gets home soon , I was exactly the same , I’ve have the virus , borderline hospital the doctor managed with steroids and antibiotics , still had it over a month , nevermind hope you had a lovely Christmas , wish you lots of love and strength , and you’re daughter improves day by day
lots love
michelleanne
Thank you so much, Michelle, for your kind message.
Im so sorry that you have had a virus and it has been rumbling on. Are you getting over it now - I really hope so.
When I am with my daughter and see what she is going through in a daily basis with such strength and courage , I have nothing but admiration for yourself and everyone here. I know that every day is a challenge and yet you are all here for others.
Look after yourself and I hope to hear that you are feeling a bit better again soon.
Love and positive thoughts
Audrey
Hi Audrey, Micheleane, Helen and all. Good to hear most of you are well. Sorry for my quietness as have not really felt up to much. Unfortunately the gvhd has got me down a bit. Unfortunately it seems to be an ongoing struggle with not much upward progression for a long time. From discussions with others it can often take a long time for gvhd symptoms to disappear. However we must keep fighting on. With gvhd we seem to be at risk of triggering flare ups to the disease by catching a cold from others or having any immune vaccines. However not all seem again to be affected but in early days of gvhd I guess we are more susceptible as our new immune systems are younger and still need time to build up thier effectiveness. So Audrey please ensure your daughter at the moment protects herself as much as possible with a mask as her immune system strengthens. I had a fairly quiet Christmas trying to keep risks at bay to concentrate my body energies on fighting the gvhd. I continued to have Ecp over the Christmas holidays and I believe Helen is undergoing her Ecp today. However it zaps so much energy out of you that you are not up to communicating straight away.
With this new year here hopefully we will all progress to improve our health. We all know it is a long hard fight but eventually we will get there.
I wish everyone a healthier new year, and keep up the good fight.
Thankyou all for being there.
Hi all
sorry to hear you are feeling very down , we had Christmas with our immediate family and our new year eves was a early night with a hot chocolate and my book , we don’t mix with people like we did before , we always wear a mask when we are out which isn’t often , it’s a new way of life ,I take each day at a time , take care , stay safe
now I know with this group , we never walk alone
much love michelleanne
Hello Audrey, Dave and Michelleanne,
Really sorry you’ve had such a bumpy ride recently Audrey. I’m so pleased your daughter has a medical team and facilities where she’s in good hands and they can offer her what she needs. How far is the journey from home to the clinic? Must be hard for the children that she’s back in.
Yes, unfortunately it really is par for the course. Hard to believe, so horrible. They are doing lots of research apparently so maybe we’ll witness some innovation sometime.
I’ve had a little gvhd flare up myself, but not half as acute as your daughter. I feel like I’m under water sometimes, balance poor, walking hard, turning difficult, ankle and feet painful. Stairs are very painful and toilet too. It’s the skin gvhd. The team are going to discuss my case and brainstorm apparently. But maybe it’s just cos I had covid and couldn’t have my ecp for 4 weeks. Definitely two or three steps back at the moment.
Thank you for sharing with us Audrey, I’m sending you heartfelt calm and peace. So hard for you all.
Is she stable?
Love
Helen
Hi , helen
i feel the same as you , one step forward to two back , I’m waiting to go and give blood because my iron is dangerously high , but my blood count isn’t high enough yet , also my thyroid count is high and I have high cholesterol so I have more medication to take , never had any bother with either before , so I’m feeling a bit sorry for myself .
how is you’re daughter audrey hope she is more stable and will be home very soon
it is so hard for all of us ,
stay safe much love
michelleanne
Hi Michelleanne,
Sorry to hear that about your blood values.
I had a sticky patch with iron. I was prescribed it and it interacted badly with something else I was taking. It made me extremely depressed for a day or two so I stopped taking it (without Dr’s consent) and things were instantly better. The docs agreed for me to stay off it without any discussion. Sorry, I can’t remember what it interacted with.
I have hashimoto too so take Thyroxin as well.
I hope you get this sorted out quickly, it’s unsettling.
About the same time I also had a false (very high) haemoglobin reading which was only spotted by my own GP (she’s great). My GP sent me to get it checked it out and the outcome was “it’s a false value”, invalid.
Do you have a copy of your own blood values along with a list of the norm values for comparison? I’ve only compared values once, but it’s good to know I have it.
I’d be interested to hear what’s up. I’m sending you inner calm Michelleanne, to ride the waves.
I hope it’s ok for you if I share this info. Please let me know if it’s ‘too much’ , i can understand.
Good night,
Helen
Hi helen
I have my recent numbers , my consultant has sent me them , my GP has said it has gone up a lot since having my transplant , have to increase my thyroxin as of today and a blood test in 4 weeks , my iron level is very high 2,000 and something it should be 500 , but my blood count isn’t high enough , so have to wait until it goes up a bit
I don’t mind sharing info , I worry if there is something wrong , but I know there isn’t
how’s things with you
best wishes
michelleanne