Day 27 today. Doing good here and so nice to have the weekend. I felt quite stressed at moments last week trying to juggle everything. I think it is time I take a bit longer off work to rest and fit a bit more time into relax. I will speak to my manager tomorrow.
Husband had a bit of an upset stomach yesterday. We don’t know if it’s Graft-versus-host-disease, the magnesium tablets etc or a combination of all sorts. We will speak to clinic on Tuesday so they know.
Today we popped out for a short while this morning for crazy golf. It was nice and we kept it brief. I know it was hard work for the husband so he came home and napped & is just rested on the sofa now.
Hi @Toadmum perhaps, quite rightly, your husband has just his recovery to think about.
You are the one keeping all those plates spinning, (probably literally, sometimes !!) that come with having a house to run, looking after your husband and children etc etc.
Perhaps it takes it’s toll, emotionally, physically, psychologically and practically.
If you are feeling stressed perhaps your GP would sign you off sick, I don;t know.
What I regret is not keeping talking to my employer
Be very kind to yourself
Crazy golf sounds good to me.
i am a bit ahead of your husband on day 46 post Stem cell transplant. Have been at home since day 13 with one 4-day readmittance for diarrhoea. I have been struggling with exhaustion nausea and lack of appetite especially over recent weeks. Also worry about Graft-versus-host-disease and low magnesium but when I have my appointments my bloods are good. it is simply a heck of a long road and some days to me seem to be slipping back and not improving. you sound like my wife an absolute hero taking on all tasks whilst juggling work, ttansport, kids, appointments etc. the fatigue is draining. i still have to go for a lie down in afternoons. its such a long road but after Friday which will be day 50 I will be over halfway to the lengendary 100. my love and best wishes to you and your husband you are doing brilliantly i reckon. Gerard.
Hi @Gerard thanks for your post and it must seem long road, but when you think about what you and your body have been through it might seem 2 steps forward and 3 back often.
Yes, I bet your wife is the unsung hero, who asks how she is, send her my love and admiration
Perhaps be very kind to yourself and slow and steady wins the race.
Please do keep posting how you and your family are.doing
Love the idea of going to crazy golf @Toadmum There’s one near us with dinosaurs and things that make noises and I’m a big kid when it comes to that stuff, so I’ve made my partner promise me we’ll go.
We are one step closer to getting dad home. They’ve given us a list of all the equipment we’ll be given and mum and I have rearranged the room ready. I’ve sent photos to the OTs so they can assess it. We’ve also been told we’ll get carers coming in 4 times a day, which is incredible. I’m so grateful to the NHS and charities that make this happen.
Dad actually managed to get up and walk a few steps yesterday (with help from the OTs). He doesn’t remember doing it as it wiped him out for the rest of the day. But when we told him he’d done it he was happy.
Yesterday mum was up at 4am writing a letter to all of dad’s friends letting them know the situation and thanking them for being a part of his life. It’s one of the hardest things I’ve seen her do. But I think it’s been an important step for her. And so lovely to do it now rather than once he isn’t with us. I’ve also been speaking to some of his friends on the phone as mum can’t face the phone calls. It’s been nice to chat with them actually. It connects me to him. Some of them he’s known for over 70 years.
I also had a brilliant conversation with a friend of mine who went through this with her mum 14 years ago. She had so much good advice. Including just buying a set of doorbells and plug in receivers to put around the house so dad can ring for us when he needs us. I thought that was a brilliant idea.
Anyway, I just go back to work. Thank you to all of you for reading my ramblings and please do keep updating on your own journeys. It’s comforting.
Wow @Ilona I cannot get over what you are all achieving and help you are receiving.
It must be such a difficult time for you and your mum.
Your mum’s idea of writing the letter to your dad’s friends now sounds so good to me.
Let’s hope it is not long till your dad can come home.
I reckon the crazy golf is just what you and your partner need
You are certainly not rambling in my book and please do keep updating us and here is where you can really say how it is for you.
Thank you so much for your kind note. It was such a boost yesterday. You sound like you’re doing amazing and your wife sounds like a real trouper! It is lovely to hear that others are on this journey too… a nice reminder that we are not so alone!
Day 29 today! Not too much news but bloods looked good today… so good that we were allowed out after the bloods came back which is celebratory in itself. All being well, we head back on Friday.
Day 30 is here. Doctors called last night as his tacrolimus levels were a bit high and needed him to readjust dose - otherwise no news.
Bit of drama on my side - very painful gland in my neck which is very sore and sore throat but only on one side. I called the doctor as I wondered whether I might have a throat infection but the doctor is wondering whether I have glandular fever. I have to go for a blood test first thing to rule this out and determine whether I need to move the husband elsewhere or take lots of additional precautions and before they’ll discuss some antibiotics. Not sure how it could be glandular fever as there’s no kissing and I’m not going anywhere but best to be safe. In the meantime, I am resting and trying to avoid swallowing too much. I think it is probably my body telling me enough is enough and to slow down.
I think probably the last sentence might be rather true @Toadmum, I know that is what my body does.
Really look after yourself and please do let us know how you are doing. Be ever so kind to yourself. xxxxx
Fingers crossed it’s something you can get sorted soon and it isn’t contagious @Toadmum . I know I hold emotion in my throat (and stress in my stomach) and always get a sore throat even before I really consciously know I’m going through anything. But your description does sound a bit more medical than that!
Bit of drama here today too. A man came to deliver dad’s adjustable bed, commode and Sara steady to our house, but half way through the delivery he put his back out and had to go off to hospital! Fortunately another guy picked up his jobs and we got the rest of the delivery later. However no mattress yet, so we are waiting for news on that.
Keeping everything crossed dad can come home on Friday as he’s so miserable in hospital and getting paranoid. He thinks someone has stolen £100k from his bank account (that doesn’t have £100k in it!) and that the hospital is going to bill us for all his treatment. I’m trying to make the dining room he’s going to be in at home as bedroom like as possible. And full of things with good memories.
Oh @Toadmum I have been thinking of you all day.
How are you feeling today?
Any idea on a diagnosis?
I trust you are just looking after yourself today.
Love and hugs xxxxx
You’ll be relieved to hear that I don’t have glandular fever! The doctor called late afternoon yesterday so they let me have some antibiotics and I already feel so much better. I don’t usually like to have them but now is not the time for suffering or for taking chances!
Husband had a trip to the hospital today for bloods, dressing change and to see husbands consultant. Bloods looking good and was another visit without needing any transfusions so we are allowed to wait until a week today for our next check! They sent off first bloods to test his chimerism today but that won’t be back for a few weeks. Just got to keep plodding along. He was very happy because he has been allowed to stop some of his medications . How is everyone doing? Thinking of you @Ilona hope your dad is doing OK and your mum is managing as best she can? Sending love x
Oh @Toadmum I am so glad you are feeling so much better, sometimes antibiotics are needed.
Your husband seems to be going in the right direction too.
If possible perhaps a lazy weekend is in order.
Spoil yourselves xx
Hi @Toadmum good news I have not got to have heart surgery, just keep taking meds and I can be referred back to my local hospital as they work closely with the London hospital.
So watch and wait (or active monitoring) .
I am a very lucky girl, thanks for asking when you have so much going on. xx
You are always here for us @Erica. We have to check you are looking after yourself too. Really happy to hear you don’t have to have surgery. They must be such a relief.
Glad to hear it isn’t glandular fever @Toadmum and that things are still progressing well for your husband. We were always so happy when we were told dad didn’t need a transfusion that week. It’s the little wins.
We finally got dad home today and even managed to get him sitting at the table to eat a bit of dinner with us, which was amazing. He also managed to slag off the French and their opening ceremony a bit! It all got quite overwhelming for him though and he started crying. I’ve never seen my dad cry, so it was really tough. We’ve tucked him into bed now and he has a bell to ring for us if he needs us.
We do feel a little left to fend for ourselves at the moment though as we were given no information on when his carers and nurse will start coming, who they are or how to contact them. Or what to do if he starts showing symptoms of something. All we know is we don’t take him back to A&E. I’m hoping someone will call us tomorrow and fill us in. Otherwise I do have an emergency number for our allocated hospice, but I don’t think the referral to there has gone through yet. Hopefully they would still help.
Going to try to get some sleep now as I get the feeling the next few weeks are going to be quite interrupted and exhausting.
. How is everyone doing? Thinking of you 
. You are always here for all of us so we need to make sure you are doing okay too 
xx