Hello all,
So my OH has got a bone marrow match! And he’ll be in isolation for about 5 or 6 weeks, what do you need to pack for such a long time in hospital? I’m not going to be able to visit him much because of the costs involved travelling to the hospital, so it’ll need to be things that’ll last for a while.
Thanks.
My husband had his transplant early June and is recovering in hospital. First, it may be possible for the hospital to offer you accommodation on site to facilitate regular visits. This isn’t something we have utilised but I am aware of its availability at our hospital for transplants so worth looking into if this might help you.
Plenty of clothing - hospitals can tend to be warmer so factor this in. Wash bag, with spare tooth brushes etc.
Home comforts - iPad, chargers, things to do if he feels up to it.
Snacks & drinks - we took in dried snacks / cereal / nuts etc, and lots of water and different drink options.
We go every couple of days to see him and to take his washing home to wash and take him some fresh food options as he doesn’t always fancy what the NHS offers.
I think he has spent a lot of time day dreaming & napping so he’s needed less things than I anticipated he would.
Find out if he has a fridge in his room. If so, can you stock him up with some easy to eat options? There has been a period of 7-10 days where my husbands throat was sore. He relied on snoothies, yoghurt, easy to eat liquid items.
Toilet roll
Wipes
Toothbrush
Toothpaste
Dressing gown
Radio
Headphones
Spray
Metal straw
Puzzle books
Deck of cards
Mouthwash
Long charging cables
Phone stand
Slippers/crocs
Socks thin and thick
Slipper socks
Lounge wear
Your own pillow (this maybe just me)
Travel games
A burner phone - old school phone that’s for calls, battery last ages and not a major problem if it’s falls and less attractive to sticky fingers. Also if you get a 1 month sim he can turn his normal phone off if constant calls are bothering him but you can still contact him. You can pick them up for around £25 with £10 credit included.
Case for your glasses if he wears them
Wet/dirty clothes bag
If you have grandkids or kids something for them too if they visit - but maybe worth asking them to bring this
Think I maybe getting confused with what to take on holiday/airport lol 
What kind of spray?
No other family only me . I got little bottles of concentrated squash, soft sweet mini fruit loaves, I’m trying to avoid too many sugary foods and he doesn’t eat nuts, he won’t read anything, I’m looking into a unlimited SIM card so he can use an iPad to watch tv (iPlayer type) and make calls home.
I was thinking about buying him a large flask because he’s a big tea drinker and they’re not gonna make him tea on demand. Maybe an obliging volunteer could fill it for him if I supply the teabags!
I wish I could get information about the specific hospital then I’d know what he’s going to have in his room some even have a telly, but thats against the rules and I don’t want to bother anyone at the hospital until he’s got an admission date.
I know hospitals have rooms for parents of children who are inpatients but even though I get treat like one I’m not and I’m only about 3 miles away from the hospital. Problem is I’m disabled and can’t use public transport and taxis cost a fortune.
I’ll look into a longer iPad cable. I’ve got rechargeable Bluetooth headphones he can use.
Anything else anyone can think of?
Congratulations @Hellodolly on finding a bone marrow match for your OH! That’s fantastic news.
Never been in this position but here’s what I would think about:
Comfy Clothes: loose-fitting pyjamas, sweatshirts, and pants for at least 5-6 weeks
Entertainment: Since visits might be limited, pack a variety of things to keep him occupied. Books, audiobooks, a tablet loaded with movies/shows, and crossword puzzles are all great options, a pen or two.
Toiletries: Pack enough of his usual toiletries to last the entire stay. Hospital-provided ones might be basic. Don’t forget lip balm, lotion, and flushable loo wipes for extra comfort.
Communication: A phone charger and a portable charger are essential. You can also check if the hospital offers Wi-Fi access?Comfort Items: Pack a comfortable pillow, a soft blanket, or a treasured photo to help him feel more at home.
How can I add to @Rammie18 response @Hellodolly.
Recently I have had to have a lot of tests, blood tests and scans etc. and I have found loose clothing, elasticated waists, short sleeved loose fitting tee shirts, no metal bits, jumpers when you feel cold.
It’s making it as easy as possible when your OH might be feeling rough or have no energy to struggle with clothes.
For me extra strong mints and something to suck.
If you have little ones around some people like a book of stamps and little age appropriate notelets, birthday cards etc. to send to them, you might pre address them for your OH
A note pad and pencil/pens
Don’t forget Skype/ Zoom meetings etc…
xx
Dear hellodolly,
Any news? Thinking of you and hope the transplant goes well!
how is your husband now? Did he cope well with the whole procedure? All the best for both of you!
He’s on day 36 now and doing well. He has been home since day 19 and we’ve just moved to weekly rather than twice weekly checks.
Definitely struggled with fatigue last week that seems marginally better this week & some upset stomachs which his medical team don’t know whether it is medication yet / the settling in of the new cells or Graft-versus-host-disease.
How are you all?
thanks a lot for your reply, it makes me so happy to read he is doing well! Just found out from your other post that he had Acute myeloid leukaemia (AML) and is only in his 30s. Really great he could do the transplant.
I guess he (and you, of course) need(s) lots of patience on the way to recovery and his body needs time. 
Hello,
We’re seeing the specialist soon and I assume that he’ll be getting an update on the situation.
He’s had another round of chemotherapy and is already booked in for another one next month.
He’s been prescribed these very expensive drugs to replace platelet transfusions but as of 22 July he’s platelets were down to 9 and he’s been getting nosebleeds, so it’s likely they are not working as the consultant said they might not.
I’m expecting that when we go to see the top man at the hospital he’ll have to give him another bag of platelets.
In the meantime I’ve been filling out a PIP form for him and just feel like I’m assassinating his character. Oddly three days after his form came I got a shock when my own PIP review came through the letterbox! So such fun, I’ve had two lovely forms to fill in!
All this While trying to find support for our hospital appointments and his eventual admission to hospital for the transplant. (No help available yet and just keep getting the same replies and references) no don’t qualify for hospital transport! Been assessed, And no I can’t use public transport because of MS! Taxi to hospital £32 each way PIP mobility component £28 a week providing it’s not taken off me!
My own health isn’t good right now, I’ve got a leg ulcer and what my GP thinks is a possible haematoma (caused by the last visit to see the boss at the transplant unit) both are making my mobility worse, my ankles are constantly swollen because of one of my medications so thats also not doing anything for my mobility either.
Sorry if I’m ranting but I’m just getting more frustrated and fatigued right now. Fatigue is probably the number one symptom of MS for a lot of people.
Oh wow, @Hellodolly you have got so much on your plate. The Blood Cancer UK support line is there for you on 0808 2080 888.
You certainly were not ranting on here, this is the one place where you can say how it really is for you.
Macmillan Cancer care is also there for you
l copy a couple of links for you
Blood cancer: money and work | Blood Cancer UK
Blood cancer and fatigue | Blood Cancer UK
Macmillan Cancer Support | The UK’s leading cancer care charity
Many hospitals have Macmillan services in them, if not, other local support services might be available and also Citizens Advice services.I find since my diagnosis
You say about your health challenges so please do look after yourself as well as you
look after your your OH.
This thread might be of use to you
Blood Cancer - Support and Benefits - Living with and after blood cancer - Blood Cancer UK Online Community Forum
I have found since my diagnosis I do not deal with what personally stresses me well and it brings on my fatigue, It also comes on with me overdoing it emotionally, medically, physically, psychologically or practically
Don’t hesitate to get medical help for yourself and just the thought of those forms sends shivers down my spine
hello my dear,
I am sorry - I have never seen your reply … sorry for that!!
How are you and your husband doing in the meantime?
Really hope things got better.
Your frustration is totally relatable. Every small thing that goes wrong is just too much in such a situation. I felt the same resp. still feel this a lot.
Fatigue only comes later, as long as you have to function for your loved ones, you will, but afterwards it hits hard.
Sending you lots of strength and energy and hope you are well 
Silke
Hello, sorry, I’ve not come back quicker. you ask how things are going right now.
So he’s about to start his 6th round of Azacitidine, he hasn’t had further nosebleeds since the last round but has had trace amounts
of blood in his nose only really visible when he blows it. they’ve taken him off the Avatrombopag because it wasn’t working and his platelets are testing on Mondays between nine and 12. So they’ve decided to give him an injection I think weekly that might mitigate the requirement of further platelet transfusions.
I am sorry to say that it would appear that he is not going to have a bone marrow transplant after all certainly not at this point. He seems to be happy to continue with monthly chemotherapy but I am afraid that at some point this will no longer suppress his Chronic myelomonocytic leukaemia (CMML). We actually don’t know for certain this is actually doing this even now. He has not had any infections other than a tooth infection in the last six months and although he has lost a little weight he seems okay. He does admit that he feels weaker shortly before they discover his platelet count is on the ground. and feels there is a pattern.
My own physical health isn’t fantastic The big lump I have on one leg that my GP initially said she thought was a haematoma is more likely to be a lipoma and I have had an MRI scan on it but I’m about to find out the results of this test next week, I am still waiting for an appointment with dermatology regarding my leg ulcer. It’s on the same leg but in a completely different place. I stopped taking amlodipine weeks ago to try to reduce the swelling. this does not seem to have worked and I have done so without my doctors consent so I’m gonna have to go back on it. knowing that, I’ve had to buy some compression socks.
My head has been all over the place because a member of my family had a very serious accident and ended up in hospital for two weeks with bleeds on the brain and a fractured skull, and it is likely she is going to be in for a long recovery.
I of course am still very very worried about the fact that my other half has backed off from having the bone marrow transplant. I am very concerned that he doesn’t understand that the treatment they’re giving him will only suppress the Chronic myelomonocytic leukaemia (CMML) and is likely to eventually stop working. He actually said to me this morning about the chemotherapy driving it down and I had to remind him that it will not reverse it. It can only suppress it. that it may stop working at some point.
At the beginning of this in about March one of our haematologist at our local hospital gave him hope by saying he had a patient with Chronic myelomonocytic leukaemia (CMML) that had been receiving Azacitidine injections for a number of years and I think he believes he might be in the position in a few years time however as we know Chronic myelomonocytic leukaemia (CMML) is not straightforward and his own type may not be the same type as this other patient has as my other half has the high risk type. The best I can help for is that he’s right and it will give him more time and keep suppressing the Chronic myelomonocytic leukaemia (CMML) for as long as possible. And that when the day comes if it stops working a bone marrow transplant is still on the table. i’m sure you understand how worried and frustrated I am.
Thank you all for your time.
Dear Holly,
Wow 6th round of Azacitidine is really good! His body got used to it!! Great that the nose bleeding stopped, this is also a good sign. Many people do not make it to the 6th cycle and usually it should work only after about 4 cycles. So, he is on a good way and it can help him for sure.
Of course, there is never a guaranteee and I fully understand your concern. But try to be as positive and supportive as you can (I know that you are 
don’t get me wrong). As long as there is life, there is hope and we still do not know much about Chronic myelomonocytic leukaemia (CMML) and each case is different! My friend’s neighbour was already in the final stage of Acute myeloid leukaemia (AML), had to go to hospital 2-3 times a week for bloodtransfusions last autumn and they said, he only has a couple of weeks left. Now - one year later - he is fine, suddenly his condition improved so much, he doesn’t even need transfusion anymore. Noone has an explanation.
Since I am reading a lot about blood cancer there are always such stories (not many, but still). Many things we cannot explain logically.
To be honest, I do not think that stem cell transplant will be an option anymore for your husband. Pls ask his doctor directly. But we were told, that this is not possible anymore if you already had several cycles of Azacitidine.
I would ask his haematologist. There is also Decitabine (as alternative to Azacitidine), you could ask if this would be an option if Azacitidine is not working anymore.
And who knows if there will be a completely new medication soon, as there is always research going on and new studies.
Hi @Silke and @Hellodolly and others.
As @Silke so clearly shows everyone is completely different with their own medical histories and our medical practitioners have their own thought, diagnostic and treatment processes.
All we can do on our forum is to share our own experiences and not suggest to others any medical matters as we are not qualified and do not know others whole medical histories.
@Hellodolly you also show so well how you both are dealing with a situation so differently.
My husband and I do too. He is ‘a head in the sand’ type of guy and has never raised the subject of my leukaemia in 20 yrs.
I also know the more I say about what ‘he might consider doing’ the less he is going to do it!!!
Therefore as you say it is so frustrating and worrying.
Perhaps all we can all do is look after ourselves and be very kind to ourselves and be there for our loved ones.
Hello again Erica, yes we are dealing with this differently I’m the one that is trying to get him to realise just how bad this situation is, I feel like he’s been burying his head! He keeps saying he feels well but he’s having symptoms that I’m frightened are significant but because of whatever autistic spectrum disorder he has he doesn’t remember too tell the medics anything or what they have said, for example when they took him off of the Avatrombopag and said that they were going to try an injection he didn’t ask any questions about it so we don’t know about side affects, frequency or what it’s called, so I can’t research it! Unfortunately it’s because I couldn’t get transport to the hospital with him to see the doctors there.
I’m extremely worried that he might leave it too late for a transplant! We don’t know what his blast count is now though it was only 2 in February, but I worry that it’s sneaking up.
The last time he/we saw the consultant at the transplant unit (big hospital) he said that there was no reason to not go ahead with one, and that he was happy for my OH to take a couple of months off to think about the decision, that was 3 months ago, and I’m certain that he thought that we’d have gone back by now, but my OH hasn’t said anything so I think he doesn’t want to which means no transplant! if the Azacitidine stops working and his blast count goes too high….
Oh @Hellodolly I can really understand your frustrations and it must be so hard for you, but honestly what can you do?
If your husband is capable of making his own decisions legally, then he has to live with the consequences at his age.
I realise we could argue that the consequences have implications for us, but what can we do???
I cannot stop my husband smoking, other people think that I should be able to. I have been though the ‘if he really loved me’ but …
I certainly have not got an answer?
Be very kind to yourself and mutual support is what our forum is all about in my book.
Please do keep posting