Hello and firstly, Babs, I am so pleased to hear that your daughter seems to have turned a corner and is doing much better . That’s wonderful news!
Helen, it sounds as if you have had and are still having a rough journey. Good news about your mouth being a bit better this morning and I really hope that this continues . The consultant says that the inflamed bowel could be gvhd or could be caused by her picc line ( which they’ve changed ). Everyone on here, including yourself , is giving me faith that my daughter can get through this. She is usually so strong but today she was in tears . She is lacking in sleep and so fed up of always been hooked onto something and being stuck in the same room for months. I know that you can all relate .
Thank you all for sharing your stories . It really helps and gives me faith that my daughter can beat this and get home to her loved ones .
Best Wishes
Audrey
Hi Audrey, just some info for your daughter… when I was briefly in rehabilitation, the psychologist gave a seminar and said something which amazed me… probably only from his anecdotal experience but he’s worked for years in haematology onkology … apparently fighters have a better survival rate.
It’s good that your daughter is resisting what’s going on if it’s a show of fighting it , but maybe she could be Kinder to herself and accept it at the same time. Otherwise she’s using lots of her energy against herself. Acceptance of how it is helped me relax and stay positive. The nurses seemed to think I was resilient which surprised me.
I hope you have a good therapist. There was one who made visits on the ward in my hospital which was my saving grace. I wouldn’t be here now if not for her.
Sorry, I seem to be not very focused in my message, I hope you can work out what i mean. It is meant constructively.
Hi Helen , audrey
i totally agree that having a positive attitude does help , and having someone to talk to really helps , but it still is very hard
the site really helps me because we have and are going through it
audrey I was exactly the same my pic was changed to a Hickman line , let her cry , has the hospital got someone she can talk to , I still cry and get very frustrated ,
hope she feels brighter today you are always in my thoughts keep strong
best wishes
michelleanne
Sorry for my poor communication and thank you Michelleanne for putting things better.
Audrey, I’m with you and your daughter. It’s terribly difficult, I appreciate that. I’m sending trust and kindness,
Helen
Dear Michelle and Helen,
I think you are both so strong and positive and you both don’t know how much your supportive texts are helping me during this difficult time . Thank you both so much for taking the time to reassure me when I know that you are both struggling but also that you have such positive and determined attitudes .
I think my daughter was a little brighter today. I will be in visiting her tomorrow and will be passing on your advice. You are right, Michelle, this site is invaluable to patients and loved ones alike. I’m sure that you do get very frustrated at times but then pick yourself up and face a new day.
im sending you both lots of positive thoughts and hugs .
Best Wishes
Audrey
Hi
pleased to hear your daughter is a bit brighter today , pleased all this helps you , it helps be a great deal keep strong
best wishes
michelleanne
Hello Audrey,
A bit brighter, .. it warms me to here that. A little ray of sunshine through the clouds.
For me too michelleanne, I don’t know how the chemistry works but it helps me too. Maybe it’s the togetherness and trust. We’re right with you and your daughter Audrey.
Hi helen
maybe it is , it’s strange that you feel close to strangers , we are right with you everyday,
And I am with you both too, as well as everyone else struggling with this cruel illness.
This site and all the kind, supportive members have been my lifeline on very dark days.
the medics think that my daughter now has colitis. More tests tomorrow.!
I hope that you have some better days soon, Helen and that you, Michelle, have even more positive days to come .
Hi audrey
this site is a good life line to me , talking to other people who have gone through and their loved ones , I’m eternally grateful to Anthony Nolan trust and the nhs for what they have done , for me and others ,
I hope we all get to living a happy and wonderful life , I hope your daughter feels better soon and her tests come back good news
Thank you , Michelle. Ill keep you posted re my daughter and hope that your health keeps improving along with Helen’s and everyone else who is struggling or has a loved one who is battling this cruel illness.
Hi audrey
please do , I hope things start to get better and she turns the corner for your daughter and everyone who is struggling best wishes
Thank you, Michelle.
im sorry that I seem to be posting a lot but it’s such a touch time that my daughter is having.
Her mood is very low. She’s missing her little boys so much. She’s hardly seen them in the last 6 months . I don’t know how I can help her to feel mentally a bit stronger.
She’s waiting for a sigmoidoscopy. There doesn’t seem to be a rush for it and that’s getting her down as they don’t want to treat the bowel inflammation until they know what’s causing it.
I hope everyone here is managing to stay as positive as possible and thanks again for all the support .
Hi Audrey,
Listening to your daughter and just acknowledging and accepting her problems and feelings is already a huge gift to her even though it feels like nothing. It’s validating and loving.
We can’t change things, if we could we wouldn’t be here on this blog.
I’m puzzled that they’re taking their time because they did with me too. I had gvhd of the bowel and it took them forever to diagnose it. I was in nappies with a catheter for months and also suffered from malnutrition until they realised what I had and started to address it. I still find it strange.
So sorry to hear that about her boys. I have no suggestions there.
We’re with you Audrey, don’t worry about posting a lot. Maybe I/we can’t reply, but if it helps you, do it.
Helen
Hi , to you both
i understand where you are coming from , I never saw my husband and family for 8 months or a visitor because of covid ,
i used FaceTime on my iPad or phone everyday so I could keep in touch , give me something to look forward and to see our grandchildren
the doctors will be discussing her treatment behind the scenes , have faith in them , I know it’s hard , hope she’s letting the staff how she feels , they do listen or you could
if it helps keep messaging I will always answer and help if I can
Hello Helen and Michelle
Thank you for your kind, helpful messages.
Another rough day for my daughter. She has been very nauseous for a couple of days, extremely tired and generally unwell. The doctors are taking her off a couple of the meds that might be causing her feeling so nauseous.
Helen, it sounds as if she could be suffering from gvhd of the bowel. Everything is passing through her and she can’t face eating. I’m hoping that it is this , as hopefully they can treat it. As with yourself, it seems to be taking forever for them to decide if this is the cause of her symptoms.
I also agree with you, Michelle, that her team will be and do work very hard to help my daughter .
I find it most hard when she is too unwell to call . Also I’ve picked up a cough / husky throat so can’t risk seeing her until this clears up.
i hope that if anybody needs reassurance and help either for themselves or a loved one that they will use this wonderful site.
Thank you to everyone who is keeping me calm and hopeful that my daughter’s symptoms are all part of the illness and given time , can be treated .
Best Wishes
Audrey
Hi audrey
sorry to hear you’re daughter has had another rough day , hopefully they will get things sorted soon
I hope people find this site as helpful as we have
you and yours are always in my thoughts and prayers
keep strong take care
To treat my gvhd bowel they prescribed jakavi, ruxolitinib is the active ingredient. I’m now, 18 months later , on myfortic and jakavi. I take lactase , the enzyme, twice a day, cos the jakavi is made with lactose and not ideal for lactose intolerance like me.
Thanks for your support too Michelleanne. We’re with you and your daughter Audrey.
Helen
Hello Michelle and Helen
i just want to give you a happy update about my daughter .
They started her on steroids a couple of days ago and the improvement has been wonderful. She had the sigmoidoscopy yesterday. They think that she has colitis and the steroids are helping as well as if she has some gvhd they will help that too.
she also got the fantastic news that her sister ( who was a half match ) - well her cells are now 100% the new cells . They are going to be playing about/ adjusting her meds for the next few days and if all goes well, there’s talk of her getting home.
I know that this is still a long bumpy journey but this news has given us such a lift.
I want to thank you so much for all the support, encouragement and empathy that you have given me during low times when I thought I was going to lose my daughter.
I am always here to hopefully support others when they need it . This is such a fantastic site for any patient or loved one going through such a severe illness.
I really hope that you both go from strength to strength . I know that it’s not an easy journey but being able to talk and support others really helps . Thank you. Xx
Hi auds
thats wonderful news , so pleased to hear that ,it is very hard time for everyone , and worrying You’re daughter is now going on the uphill turn
I’m always here to help if I can it’s my way of giving something back
good luck and I hope everyone goes from strength to strength
keep in touch xx