Hi @Toadmum what a bond for the brothers.
Great to have your husband home (with the biggest medicine bags you have ever seen)
I have heard it is also quite an adjustment for the patient coming home and very tiring as well.
Enjoy and be very kind to yourselves and please keep posting
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Day 20 today and not much to report which is great. Very nice to have him home. He rested in bed last night whilst I watched some TV. It took a while last night and this morning to go through his medicines and make sure he had taken everything correctly. I will try to find a medicine or pill box although he needs so many that I donāt think they would fit in just one.
This morning he came with me to watch our daughter play sport outside. I carried the chair for him and he sat outside with his cap and I think really enjoyed it. We came straight home and he has been resting and dozing on the sofa since. Not sure his taste buds have recovered yet so he is eating little and often.
Last thing to note at this point in time is that he has burning hands periodically. Weāre not sure what this is but the doctors have indicated itās not Graft-versus-host-disease but a side effect from the medicines. Last night he held a wrapped ice 
pack but I have some freezer gloves coming today. I held his hand at one point during the night and in the end I had to let go - it was like touching a fire! 
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So good to read all your positive updates. Especially that your husband was able to go watch your daughter play sports. What a lovely ānormalā thing to be able to do.
Unfortunately weāve been back in A&E today. Last night dad was so weak I had to practically carry him upstairs to bed. Itās a good job Iām temporarily living with them. Heās lost feeling in his right hand and has a very swollen face, cough, blurred vision and is very weak and wobbly. He had an appointment this morning for antibiotics anyway, but they sent us to A&E after. They did a CT scan as they thought he may have had a stroke, but it seems like it is just yet another infection.
I had to come home to feed the cat, so am home now, but will be going back to the hospital to pick mum and hopefully dad up later. Although there is talk of keeping him in, which I really donāt want them to. Heās been getting very confused when he wakes up, doesnāt know where he is, so I think being in hospital will be worse. Itās all just so exhausting. I wish he and mum werenāt suffering so much.
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Hi @Toadmum if you have any concerns please do get straight on to his ward they are there 24/7.
Good luck organising the medicines.
Oh @Ilona you have so much on your shoulders, yes, you must be absolutely exhausted, I really feel for you.
Personally, not medically, I doubt your dadās medics will keep him in hospital unless they really feel it is where he needs to be.
When you have time please do keep updating us, but the main thing is that you really look after yourselves and especially you.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
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It is always lovely to hear from you although I am sorry you are all going through a tough patch. Take care of yourselves. These are not easy things to go through so perhaps you can allow yourself extra grace whilst you navigate everything. Keep us updated if you find time, we will be thinking of you.
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Day 21 today post transplant , a nice non eventful day. Miserable weather isnāt it. Hoping it might be pleasant later this week?
We are off for our first out patient bloods tomorrow post transplant visit tomorrow morning. We havenāt been to one at this hospital so it shall be an adventure and I will update again tomorrow.
Recovery and feeling wise, I would say so far he is fatigued easily but enjoying being home & eating normal food.
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Oh @Toadmum I do like nice non eventful days.
However I am also a girl for an adventure.
Yes, please do report back to us.
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We did our first haematology day unit outpatient blood checks today post transplant. A relatively smooth process although it took HOURS (around 8 hours) once you factored in the initial blood tests and waiting, a visit with the doctor and then treatments. Everything looking good for today.
He needed a magnesium transfusion and platelet transfusion but neutrophils looking good and haemaglobin increasing nicely. The doctor indicated we may be able to skip our Friday bloods and come in a week today but we will wait and see what they would like to do. We will simply do what we are toldā¦ 
In our usual mantra, trying not to borrow worries from tomorrow so for today so far at least, things have been good.
My only other musings for today is just how difficult it is to manage work alongside either having cancer or being a carer to someone with cancer.
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Hi @Toadmum you must both be completely exhausted after today, I know I would be.
You raise a very good point, that is often not talked about which is how difficult it is to manage work alongside either having cancer or being a carer to someone with cancer.
There are also the financial impacts.
I attach the information from the Blood Cancer UK website
Blood cancer: money and work | Blood Cancer UK
Something in retrospect I think I did wrong was not keeping talking to my employer.
It is easy to say can I take 2 weeks off, but when you do not know the end date or times it is more difficult.
I like your mantra, why canāt I sit with the good, without the āwhat ifāsā coming in to spoil it.
Be kind and really look after yourselves.
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Day 23 today. Happy to have had a day away from the hospital after such a long day yesterday.
Husband is doing good. We are in a better flow with the medicines and heās focussed on resting and prioritising eating, hydrating and sleeping.
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Yes, @Toadmum, you must have both been so tired after yesterday.
It sounds as if you both are really getting in a good routine.
Please donāt exhaust yourself working as well.
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Day 24 and some nice weather! The hot weather is great for the kids and I but not so much for the husband, he has been laying out in the lounge with the blinds down keeping cool. All OK today - I would say he is quite fatigued and going with the need to rest.
No other news but we go back to the hospital tomorrow for bloods and a dressing change and picking up some extra medicines so we donāt run out.
Sending lots of love for anyone who needs it.
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Hi @Toadmum I would say it is a good idea to have a rest today as you are a back to the hospital tomorrow.
Receiving the love and sending the same to you and all.
Really good to hear things are still going well @Toadmum .
Itās funny I was thinking about the balancing work and caring for someone with cancer today as I was sat working at the hospital with dad (and getting told off by a nurse for plugging in my laptop!). Iām very lucky that I have a very understanding employer (I work for a charity so youād hope so), but also although my parter and I are in our late 30s we donāt have children to think about in terms of time or money. My partner is a freelance events manager and has picked up lots of work this year, which has meant Iāve been able to go down to 28 hours a week, which I fit in as and when I can. I feel very fortunate to be in this situation.
The charity I work for actually has some information on help available if you are a carer. Sharing here in case itās of any use Carer | Turn2us
Dad had a really bad night in the hospital, soiling the bed and nobody clearing it up. But when I went in this morning he was the most lucid heās been in days. He even sat up and swung his legs over the side of the bed to eat his lunch. And took a couple of phone calls. Something he hasnāt done in nearly a week. It did wear him out, but it was good to see.
We had discussions with his clinical nurse, consultant and palliative care team today and although itās sad I feel more confident that we have a bit of a plan in place now. Theyāre going to discharge him early next week and support us with what we need to have him at home. Probably turning a downstairs room into his bedroom. The palliative care woman was so kind and so down to earth. She really put him and us at easy. Weāll have occupational health, physio, district nurses and hospice at home to help us up until the last few weeks, at which point if there is space heāll be transferred into a hospice. I just donāt want to see him suffer any more, so it feels good to have a plan. And to agree not to take him back in through A&E. Whatever happens he stays home, or goes to the hospice. No return to the hospital. It will be so much better for his mental health and I can put music on for him that he loves.
Anyway I hope everyone is coping in this heat. Dadās hospital room was actually really nice and cool. I nearly asked if I could sleep there with him!
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Oh @Ilona You are really going through it. but it seems to have helped now you have a plan in place.
Really look after and be very kind to yourselves.
The Blood Cancer UK support line is there for you on 0808 2080 888 and we are here for you too.
Please do use us,
Thinking of you loads and sending you love xxx
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I can imagine those were some tough conversations but so wonderful to hear about the team and about the plans that you have in place. Going through A&E is incredibly exhausting and stressful. I can imagine it might be a weight off your shoulders to know that you donāt have to put your dad through that any more. Sending you a lot of love.
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Day 25 today!!! As expected it was another 8 hours at the hospital today. Bloods were looking good but he did need a magnesium transfusion. I believe the tacrolimus immunosuppressant causes magnesium deficiency. We donāt have to go back until Tuesday all being well but I expect a magnesium transfusion may be required then.
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Awww @Ilona
Your update hurt my heart. You sound a brave and resilient person 
. It is good that you have a plan in place that will make your Dad feel comfortable.
Having had experience of a local hospice with my Mum I can only say the hospice and the team were like a little piece of heaven on this earth 
. They are amazing and it is truly special that you have secured this for your Dad.
So turn on his favourite music and take some time for you too.
Sending love xx
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Thank you @SarahMum @Toadmum and @Erica
It is certainly a rollercoaster. Dad (understandably) canāt remember what day of the week it is and canāt understand why we canāt bring him home today. Weāve explained we need some help from people who donāt work weekends. We need to get a hospital bed home for him. But he says heās going to get up and walk out (fortunately he physically canāt).
Heās told mum to phone him every half hour. I know heās scared and upset but thatās so unfair on mum and I canāt help but be annoyed with him. He doesnāt seem to understand we are doing our best, but having to work within a system.
I think if we can just get through the weekend things will be better. Although mumās worried about not being able to leave him. Not being able to go out and do the shopping. But I think we can ask for some carers to come in and help. As well as having the district nurse coming weekly.
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