Oh @Debbie36 thanks so much for the wedding photo, your daughter really does look stunning and so does her dress and the detailing and length are perfect.
I am so glad that you managed to have a few ‘normal’ days at the seaside with your children and grandchildren too.
It must be so, so difficult for you with your OH so unwell. You must feel completely helpless to fix him…
I will tell you how you are doing, I think that you are doing a brilliant job with him being so far away. As others have said ask for and accept help and really look after yourself and be kind to yourself.
Sending love to you both xx
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@Debbie36 what a beautiful picture and setting. Its so hard watching a loved one go through this but as I say to my husband we are a team and we experience the highs and lows together. It must be hard not seeing him everyday that journey seems awful but I hope he is able to be at home with you soon, its sounds as though transplant is working well so fingers crossed.
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I just love this. How beautiful. You must be so proud! X
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You and @summer123 are both doing so well and what a team you both are with your other half’s! Amazing X
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Hi @Debbie36
Some of us have a terrible time with the transplant - I’m so sorry your husband is. The mucositis and diarrhoea can be horrendous. And the exhaustion. And the inability to eat. But once I was home, I was up and on dog walks in 5 weeks, which seemed highly improbable when I first got home. So I hope you don’t despair - there is time for massive improvement yet.(I was under a bit of pressure to be walking though, as my husband had to go back to sea - so your husband may well take a bit longer. )
Your daughter looks absolutely beautiful, and that is one stunning photo! I’m so glad you got to enjoy a celebraton and some normality. It can’t be easy visiting your husband when he can barely interact. In some ways, covid was a blessing for my husband - he wasn’t allowed to see me! I can imagine you are at a real loose end there. But I’m sure your husband is glad to see your face though.
Wishing him and you all the best.
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Thank you Fullofbeans i found your comments very reassuring. What you describe sounds very much like what my OH is going through.
I am busy with work so have lots to focus on in between visits. Thank goodness for the internet which lets us keep in touch.
Again thank you.
Debbie
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@Debbie36 your daughter looks beautiful. Gorgeous pic of the 2 of them. You be good to yourself too xxx
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After a difficult few weeks and days believe it or not yesterday was a turning point and I’m going down to Oxford in the morning to discuss my OH discharge plan! He is doing so much better and sounding much more positive. X
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Fantastic news, @Debbie36! That’s amazing. I’m so happy for you both. Please let us know how you both get on. There may be a few physical ups and downs in the earliest days, but just being at home with the person you love after such an ordeal can be quite a high. He’s done so well to rally like this. Brilliant news! X
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Wow, what a turn around! Like @Fullofbeans said, all of a sudden you see those improvements!!! I’m so pleased for you. Please let us know how the meeting goes X
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@Debbie36 wow, what a turning point for a discharge plan being discussed tomorrow.
I can hear the relief in your post.
Now I know this would be difficult for me but please make sure you state clearly what help and adaptions you will need.
The same with family and friends (if you have them), that is what they are there for…
I expect you OH will be quite weak and tired.
Just give yourselves time to adapt to your ‘new normal’ and slow and steady wins the rocky race.
Be very kind to yourselves and spoil yourselves
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Its confirmed i am picking up my OH Wednesday morning. Hospital are more than happy with his progress. Weekly appointments in Oxford plus a second weekly appointment we hope will be at MK but may be a second trip to Oxford a week.
How am I feeling? Terrified of what the next few weeks/months will bring. He spent all weekend trying to get me to come and get him he has had enough now and just wants to be home.
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Oh @Debbie36 I bet you are terrified, but you do not have to go through it alone, we are here for you to be able to say how it really is for you.
If you would like to talk to someone don’t forget the Blood Cancer UK support line is there for you.
The role of spouse/carer can be a thankless task and nobody asks how you are, we will.
Just take it a day at a time and perhaps make sure you have just a little time to yourself.
Look after yourselves and treat yourselves.
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I can imagine it’s really scary. I know you didn’t like him being away but not knowing what the next few months will hold is hard. He sounds like he has a great medical team? Have they explained everything to you and have you had the chance to ask questions?
As @Erica said, you are not alone and the support line is just a phone call away X
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I can identify with some of the things your OH has been through @Debbie36 . When I went home I was really weak and constantly out of breath when I walked anywhere but the more I went out the better I felt and the quicker I recovered and the time did come when I was drifting back to some sort of normality before too long so hang in there.
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I am keeping you to your promise that i can look for support here when things are tough.
My OH has been back home now for 4 days and he is weak and needing lots of help with almost everything. I have worked as a nurse and carer so its what i was expecting.
However, he’s not really saying much and keeping his eyes closed when I’m trying to communicate with him. Doesnt want to eat or drink so im trying to encourage him nicely. Sometimes it works and other times it doesnt.
I took him to the hospital for blood tests Friday and he nearly collapsed as we were walking from the car which wasnt very far at all. Luckily a nurse managed to get me a wheelchair.
Tonight i settled him back to bed after helping him shower after a nasty bout of diarrhea. I sorted everything out i needed to and was having a moment downstairs. I heard a noise upstairs and found him on the floor he said he was looking for me. He seemed confused and weak but i managed to get him back into bed.
It’s going to be a difficult few weeks while he is getting stronger. Back to Milton Keynes hospital on Monday for more bloods and Oxford Wednesday to see the transplant consultant in clinic. The specialist nurse has been great and has text me every day since he came home. I really need to see if i can talk to her while im at clinic.
I was hoping i would start to see some beginings of an improvement but that doesnt seem to be the case. We are day +38 now and i know its early days but i need him to want to get better too.
Everyone keeps saying to make sure i make time for me to keep my batteries recharged but i seem to be flat out with all my to do list with full time work as well as doing all i need to at home.
I would like to think it will look better in the morning as it always feels worse in the middle of the night but i doubt that very much.
Im sorry that this isnt a more positive post 
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Hello Debbie - just reading through your post i can feel your pain at all this being dealt with just now - as you say you are well used to nursing but it’s such a different scenario isn’t it when its the one closest to you and all the emotional feelings, worry and anxiety that goes with that. It sounds that right now OH is really worn out with little strength - I know from past experience with such things “just” the transfer home after time in hospital can be a huge thing for someone really not well and it can take a week or so to pick up from that in itself, which of course is on top of what is already going on - but it will ease and each week that goes by I think you may see some improvements and think ah yes there is progress forward small bits at a time. You certainly do need input and chat with the specialist nurse to see what other bits may be available to you to assist - is there a Rapid Response team for discharged patients from your hospital? That could help you for a few weeks with someone else coming in to assist, gives you support and someone who is doing it for their work (just as you have for work) rather than all the emotional pull of care being solely on your shoulders. I hope too thr hospital may suggest and assist with nutrition to build strength for OH a little, perhaps things like Fortisip that gives some nutrition as well as fluid in all in one. I can well imagine the scenario of you finding OH on the floor as wanted to look for you, it’s hard for you and the patient when confused doesn’t connect I can’t walk and find someone - sometimes even something like a little bell by the bed to ring when needs to see you - it may mean you often running up stairs to answer a bell but may prevent the fall. Is hospital transport possible that OH could go in a wheelchair in or a taxi firm that takes wheelchair - Red Cross often will lend a wheelchair for someone not well at mo - just few practical bits that may assist for a few weeks until strength is gained as hospital visits are hard going both for the patient and those taking them - that transport can help a bit as usually the hospital transport (arrange via GP usually) not only takes someone in the wheelchair but also up to the department. All of it depending of course in current times when all things are over stretched😔. Keep letting us know how you are x x
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Oh @Debbie36 I cannot really follow @Jilly20 post which is absolutely brilliant.
After reading your post @Debbie36 my thought was that the patient so often takes their feelings and frustrations out on their nearest and dearest and it hurts so much, especially when you are doing so well and so worn out as well, but it is not their fault.
I expect it must be a horrible time for them too.
Being a wife and carer, even with your nursing background, can be such a very thankless task sometimes.
I am the one who says about recharging your batteries and you must be cursing me, but you can tell how quickly you get exhausted, lonely, feeling not valued.
Yes, a word with your OH’s CNS (Clinical Nurse Specialist) sounds a really idea to me and use us and the Blood Cancer UK support line on 0808 2080 888 just scream and say how you are really feeling.
We don’t want positive posts that are not reality.
You are doing a phenomenal job in very difficult circumstances.
Loads of love and virtual hugs, put some in your pocket for when they are really needed xxx
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Hi Jilly & Erica
Thank you for your comments. And no i dont curse you Erica because you absolutely understand where im coming from. Its those who dont know what else to say amongst friends and family.
As it is so far Jilly, 130 mile round trip to Oxford driving is the only real option. Im just grateful that i only have to drive there once a week with MK picking up the second weekly appointment.
Its just so much harder than i was expecting. X
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Ah yes all suggestions re transport no good at all for such a long hospital trip - goodness that’s quite a journey for you both - can only do all this bit one day at a time - and know it is quite normal to feel as you do, you are carrying - and achieving much- in your care but it is wearing and tiring - do please keep letting us know how you are faring and know all here care and have empathy for you
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