Day 42 ~ not too much to report but uti or whatever it is has at least improved somewhat since next week.
He’s definitely got some Graft-versus-host-disease on his skin on his face. Using dermol lotion.
Otherwise everything good today 
5 Likes
Hi @Toadmum everything good sounds good to me too!!
1 Like
Day 43 and it is confirmed that he doesn’t have a UTI but does have BK virus which can be reactivated post transplant. Not sure how much treatment is available and it’s more of a run it’s course thing but he may have treatment in the day unit. The doctor who called was going to go away and speak with his consultant to see what the plan is. In the meantime, he is hydrating lots to keep flushing his bladder / kidneys.
Other than this, all is well for today. Enjoying the Olympics and the summer and being at home.
5 Likes
Hi @Toadmum thanks for the update, I am glad that the doctor did ring.
I have watched odd bits of the Olympics with sports that I enjoy, but I was up the hospital for something else yesterday and while I was waiting the TV was on and I found myself quickly getting hooked on sports I not even keen on !!!
Enjoy the Olympics whilst it is on.
5 Likes
Day 45 today & another nice couple of days. He is feeling much better on the bladder front than last week. We go back to hospital tomorrow for bloods & check up, and he has an appointment to remove his Hickman line which he is looking forward to, provided his bloods are OK.
Today his chimerism results came in - 100% for peripheral blood and 99% for T cells which he is feeling pretty chuffed with. Hopefully the doctor can run us through it in person tomorrow.
Not too many plans for the weekend but we are getting quite close to moving house and so I need to spend a bit of time clearing out and organising some bits so that when the packers come, I am not transporting junk.
Sending lots of love and hope everyone’s week is going well. @Ilona thinking of you all!
5 Likes
Hi @Toadmum et al. I am day 64 post Stem cell transplant and am still struggling with lack of appetite, weight loss and tummy issues possibly due to recurrent c.diff infection or maybe a bit of gut Graft-versus-host-disease, hospital are trying to determine further. Which is bit draining and depressing. Will have to have endoscopy and biopsies apparently. Also MRD no longer CR, but they hope reducing cyclosporine will sort that out. Bloods and chimerism good however.
Wife is in Amsterdam with son settling him in to new university campus.
Best wishes to all
5 Likes
Gosh @Toadmum I did not realise that you are getting quite close to moving house as well.
You don’t do things by halves do you, another one of life’s most stressful events.
Take it steady all of you.
Hi @Gerard yes, your situation must be draining and depressing and miserable
It sounds as if the hospital are trying to determine further.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Be very kind to yourself and please do let us know how you are getting on.
2 Likes
Oh god moving house is so stressful! I hope it goes as smoothly as possible for you @Toadmum
We’ve had a pretty good week here. Busy with blood test Tuesday, consultant Weds, transfusion Thurs and occupational therapist Friday. Dad’s been moving about a bit more, walking a few steps, which has been nice to see. Although it’s exhausted him today. Mum broke down a bit in the hospital on Weds…I think the severity is starting to dawn on her. And then the consultant shook dad’s hand before we left, which he’s never done before, so obviously I’ve read into that as him thinking he won’t see him again.
Weirdly in contrast to the ok week I’m feeling really sad and drained today. After being back for 5 days my partner left to head to work at a festival that means a lot to both of us. We have a lot of friends involved in the running of it, who play in bands that are playing or are just generally attending it. I always go early and have a day of reading my book in our van before the masses arrive. But I’ve made the decision not to go this year. It’s just too far away and the phone signal is so bad there, I wouldn’t be able to relax.
I feel like I’m waiting for all of this to be over and wishing it was all over without wishing for what that means. And I’ve got so much life admin to do and just can’t face doing anything right now.
3 Likes
Oh @Ilona as usual, but especially today, I felt exhausted just reading your post.
I find every medical appointment wears me out
It sounds as if he is trying hard to move.
You say that the consultant shook your dad’s hand as you left, I don’t know but perhaps try not to read too much into it.
I have not noticed if a consultant has shaken my hand but I think they have my husband.
You say you mum broke down a bit at the hospital on Weds and that you have been feeling really drained and sad today.
I have been feeling the same for a couple of days. I think the stress and exhaustion of it all when you keep going and keep going then comes out emotionally.
Perhaps you also have loss in the mix of not feeling able to go to a festival that obviously means a lot to you or having a life of your own.
As for life admin I find breaking it down in order of priority and just doing one job at a time as I feel I can.
Sending you love xx
2 Likes
@Gerard thanks for your note, it sounds like you are doing well. It is a real marathon and not a sprint isn’t it! Keep going. Did your son settle in well to university?
3 Likes
Definitely don’t read into it - my husbands consultant shakes his hand every time. I understand what you mean though ~ you’ve got a lot on your plate and I think the tricky thing is not knowing when the lasts come. It’s the same for all of us - Acute myeloid leukaemia (AML) or not. Are you feeling a little better emotionally now? X
2 Likes
Day 49 here ~ Hickman line was removed on Friday morning and he had some more blood tests which were good & stable. Consultant discussed the chimerism and gave him some steroid cream for Graft-versus-host-disease flair ups if needed. He hasn’t used it yet and I imagine he won’t want to but it is nice to know the option is there.
Weather is a bit warm for him today so we have come over to his mums house as she has some air con.
Hope everyone is doing ok. We should be exchanging in the next few days with our move. House is in disarray so I would like to get that over and done with but you know how moving goes!!
4 Likes
Oh @Toadmum you have a mum with air con, brilliant.
Do keep us posted xx
Can we all come over to your mum’s??
Feeling a lot better here thank you. Saturday night I dragged myself out for dinner with a friend who was down from Manchester, which was exactly what I needed.
I’m also going into the office for the first time in about 2 months tomorrow, so that will be nice. A bit of normality.
Dad’s sinuses still really blocked since the infection he got a month ago now. The first antibiotics didn’t do anything, but he’s got some different ones now so fingers crossed. We also have steroid nasal spray as a last resort, but like your husband with his steroid cream @Toadmum I don’t think dad will want to use it…
I need to find a way to give mum a break this weekend I think. She’s always “on call” for dad when she’s home, so I need to send her out with a friend for a few hours or something.
Hope you’re doing ok @Erica and that you get to exchange and complete soon @Toadmum Moving is so stressful.
3 Likes
Hi @Ilona a bit of normality sounds good to me and as for dinner with a friend, it’s priceless.
Perhaps you and your mum both need a break separately or together to just go a little way to recharge your batteries, which I expect are very depleted.
Look after, be kind and spoil yourselves
2 Likes
Woohoo! Bye Bye Hickman! 
. That’s a real positive. Good luck with the house move and do keep us posted
2 Likes
Can’t bring myself to comment on the moving front although there is slow progress & I’ll muster the energy to comment to that on Monday.
Day 52 ~ bloods looking good today during clinic and not really much news other than that. It’s been hot for him at points this week. Glad it’s the weekend - feeling ready for a rest. Hope everyone is OK!! @LMahon21 I noticed you liked some of my early posts. Hope you are doing OK & please do feel free to post on this chat if you need any support
3 Likes
Yes @ I am also glad it is the weekend, yes, it has been a hot, muggy week.
I think it’s day 56! Doing good here. We finally exchanged on our new house and move next week so I am somewhat focussed on that. Looking forward to some annual leave in the new house to slowly settle in and get sorted.
Husband is doing well. Energy better than after he got home initially although he’s careful to rest. Trying to get out and do some walking / slowly build up strength. Bk virus has been much better ~ maybe 1.5 weeks of pain / blood in urine but much better since. We opted for no treatment due to the risks / inconvenience so he went with just flushing it out with water.
Other than that, some Graft-versus-host-disease on his skin but mild. He has steroid cream to use twice a day. Eyes a bit sore but using drops to keep them moist. Nothing in the grand scheme of things but his medical team have been amazing at keeping on top of things and supplying different options to try.
@Ilona how is everything? Thinking of you all x
5 Likes