Hi All,
Hope everyone is well and looking forward to Christmas!
I have been looking through the stem cell transplant threads to get an idea of what am I in for after Christmas and just wondering if anyone could share ideas of what they took into hospital with them or what they wished they had took?
Any advice greatly appreciated!
Hi @nbk112
Great news that your transplant is imminent. I had mine in January this year (for Acute Myeloid Leukaemia) and so I was able to have a wonderfully hopeful (if slightly worried) Christmas at home. I hope you have a great Christmas too, and don’t worry too much - these stem cell transplants are a tremendous opportunity, and are heavily managed and controlled by your transplant team. You will be in the best of hands, and it’ll hopefully be your last major treatment for now, so you’ll soon be able to celebrate that too.
I wish I’d taken my duvet. That would have made the hundreds of hours in bed cosier, and I also got the shivers a lot, so a duvet would have been so appreciated. Maybe take a good pillow too? It depends if you are allowed anyone to help you bring your things in. I wasn’t, because of covid, and had to carry my own case through the hospital to the ward, so was limited.
You might need a good moisturiser for dry skin. I took a nail cream for my splitting chemo nails. A lip balm for dry, sore lips. A lavender spray for my bed sheets was also useful - the chemical smell of the sheets made me feel very sick when the nausea hit. Warm layers at this time of year - the ventilated air meant my room wasn’t the warmest.
I couldn’t appreciate much in the way of entertainment, as I slept a lot, but others have appreciated i-pads with Netflix and FaceTime, kindles, magazines, i-pods, crafts etc.
Food! You may have appetite issues after the chemo, and obviously hospital food isn’t always the best. Find out if you have a fridge/freezer in your room, and perhaps take some ice lollies to ease a sore mouth, and plain items that are not too fatty and rich, to snack upon should you need to. Ginger buiscuits for nausea. My husband delivered peelable fruit (it must be peelable when you are neutropenic) as I was able to eat that.You’ll need a good variety of items - you’ll probably go off random things.
Hopefully this won’t be a problem for you, but I was in a hospital 2.5 hours from home during covid and a lockdown and and so I couldn’t have visitors for my 6 weeks there - and therefore supplies were an issue. We arranged for my husband to come up every week with supplies of fresh fruit and ice lollies - the things I lived on (although the hospital should provide ice poles.) But he also collected my laundry, and brought fresh clothing with him. I couldn’t have packed and carried enough for my whole six weeks there. So a goodsized, zippable laundry bag would be useful. Porters did the ferrying of everything to and from my room to reception.
As I left the hospital, I also wished I’d brought a few Thank You cards, for the porters, nurses, cleaners etc.
Hope this helps a little, and gets you thinking what you may need.
BEST OF LUCK, and a very Happy Christmas to you! I hope you feel as marvellous as I do, one year post-transplant.
All the best
Fullofbeans
Hi @nbk112 well how can I follow @Fullofbeans, such a brilliant reply and so useful having had a stem cell transplant at the same time of the year.
What a very special Christmas present for you, really spoil yourself.
Now the main thing is to look after yourself and keep posting.
I await the thoughts of others.
Hi @nbk112,
well done for posting- its good to hear from people going through the same challenges.
I have the honour of having had 2 stem cell transplants in the last 5 years so I would like to think that I had the perfect advice for you! But in truth, I don’t think I can top #fullofbeans comprehensive response!
I personally relied completely on my Laptop (note that hospital wifi is variable!) and phone (note that hospital mobile reception be variable!). At times I had to use my mobile to Hotspot my Laptop in order to get internet.
I took books etc in to hospital, but found that I couldn’t read 90% of the time.
The saviour for me was watching TV, series, and films on my Laptop. If you don’t have Netflix, Britbox or Amazon Prime I would consider getting a temporary subscription to something.
One thing I would add - I would recommend checking with the ward as to what they will allow you to bring, especially in these COVID times. Some wards will not allow duvets, food and some other surprising things. So check beforehand to avoid disappointment!
Oh, and don’t forget your rechargers !
Wishing you the best of luck. You’ll be just fine!
Hugs
Q
My stem cell was a long time ago and I didn’t have one then but I would take my iPad and mobile phone as well as chargers as you can face time family or talk on WhatsApp as you probably won’t be able to have visitors. I found ice pops great as it soothed my mouth and I did not have an appetite. I agree books were more difficult but take one just in case. Good luck
Hi @nbk112 @Quentin @Fullofbeans @Joan perhaps a light hearted, fewer pages, easy reader might fit the bill.
Look after yourself and always be prepared to ask for help
Wow!!! Thanks so much for answering, this is so helpful! It’s good to talk to someone as well that makes it sounds like somewhat of a positive experience (in as much as it can be). I hope everything is going smoothly for you now.
A duvet is a good idea, the only drawback I think I have is that I assume the cover will need to be changed daily which I can see being a pain for my poor family members doing my washing. Last time I was in though my next door neighbor got a delivery of pillows, a duvet and mattress protector from his sister in law!! So I assume its okay Covid wise, so a pillow may be doable.
I seem to suffer terribly though with dry skin when on chemo. I’ve taken multiple creams into hospital but they never seem to completely work, think I’ve resigned myself to it this time!! 
Do you mind me asking if your appetite decreased or had if you had mouth ulcers? My consultant has pretty much guaranteed me both! I do tend to get bored of the food in my hospital which isn’t the best anyways.
Luckily I live about 10 mins from my hospital and have never been allowed visitors so I am somewhat of a pro when it comes to getting laundry in and out 
Thank you cards are a very good idea!
Hi, thanks for taking time to reply.
I’d say having 2 transplants definitely qualifies you as an expert in my books! I’m going to have to figure out how to use my mobile hotspot from the sounds of things. I’ve been in before and the internet is usually ok but last time it did go down for two days. At the time I had books to read but doesn’t sound like I’ll be up to it this time.
Thanks for your advice!
Or maybe a book I’ve read before? So can dip in and out of
Hi @nbk112
I don’t mind what you ask - ask away!
Yes, my appetite did go after the transplant chemo. And it did with the previous chemo. I had daunorubicin and cytarabine first, then I’m ashamed to say I lost interest in the chemical names by the time I got to the transplant. But they all destroyed my appetite, for about 2 weeks each time (6 weeks in total, over 3 hospital admissions.) I only managed lollies and a small amount of fruit for each 2 weeks. However, the consultants did say I was very sensitive to the chemos because I seemed to get many of the side effects. I’ve read that some people barely feel the chemo effects - so it may be that you don’t fare too badly. I hope that’s the case.
I didn’t get mouth ulcers as such, but I did have a couple of days of a razor blade throat that they gave me oromorph for (oral morphone) - which completely sorted it. And my mouth was a little bit sore generally. I was warned about mouth ulcers too, but they provided me with special mouthwashes to prevent them, which I used 4 times a day as instructed, which kept my mouth clear.
Yes, my skin was very dry with the chemo too. And I got all sorts of rashes, and peeling hands and feet. I’ve just remembered I was given a thick petroleum moisturiser for splitting skin on my elbows, and that was good. But it wasn’t something you’d want on your face!
Ah, glad you’re closer to home than I was - that must be comforting. And really well done for managing no visitors during your treatment. I didn’t have any either for the whole 16 weeks in hospital, but if you know that’s going to be the case, it’s manageable - and I suppose I’m quite self contained anyway. Perhaps you are too? And to be honest, once the chemo hit, I didn’t really have the energy to deal with visitors. Just the thought of it now makes me feel exhausted!
Do you mind me asking what you’re being treated for? And how you feel? I hope you are ok. You sound quite upbeat, which is amazing. I found that the more positive you can be, the more positive you genuinely feel - so you are off to a great start.
All the best.
Ah see I’ve been quite lucky so far side effects wise, they’ve all be pretty manageable. But I have noticed each time I get more ulcers more quickly, sort of like a build up effect.
Just treated myself to new moisturizer so here’s hoping it works!!
Lost a bit of my positive mentality as they’ve delayed my transplant 
they think there’s evidence my cancer has relapsed outside the bone marrow so I could need more treatment depending on scan and biopsy results. Hopefully if it has my bone marrow is still clear 
@nbk112 yes, isn’t uncertainty unnerving , please let us know how you get on and don’t forget that this forum and the Blood Cancer UK support line are always there for you.
Look after yourself and stay safe.
Oh best of luck with the tests, @nbk112. Should you need a bit more chemo yet, at least you’re tolerating it - but I really hope you don’t need more before you Stem cell transplant. Everything crossed for you. Do you find out before Xmas? I don’t suppose so now, which is a huge shame. I hope you can enjoy Xmas nonetheless. You’ve done so well so far- you’re getting there.
Take care. X
Hi, I am due a stem cell transplant in Jan/Feb next year for myeloma. The information given in your post is really helpful. I am really scared as never been through anything like this before and I know everyone reacts differently to the treatment but if it helps in the long run then it is something that must be done. How long did it take after the transplant for you to get back to normal?
Thanks! Had a phone call yesterday and it is leukaemia as they thought. So after Christmas they are going to put me on a more intense course of chemo and hopefully I will only need one or two cycles then onto a transplant to make sure the leukaemia knows it’s not really welcome here! Atleast it’s not another form of cancer… Better the devil you know I suppose 🤷
I also tested positive for covid so atleast part of me is being positive 
Hope you’re having a lovely Christmas!
Oh @nbk112 that’s 2 shock on top of each other, please remember we are here for you.
Covid symptoms are often not very nice, especially with a compromised immune system.
Perhaps you might want to let your medical team know, because it might affect your treatment.
Please let us know how you get on.
Take special care of yourself
Hi @Anita a great big welcome and it appears you have found us just at the right time.
I think it is so natural to feel really scared, the unknown is scary and very isolating emotionally and practically.
Please keep sharing on here, your forum family will be there for you.
The Blood Cancer UK support line is also there for you.
Take special care of yourself.
Hi @Anita
I’m so sorry you’re dealing with myeloma and facing a transplant. And it’s completely natural that you are scared - I was too, and I should think everyone who has one is. I cried when they told me I did indeed need the transplant - it felt like such a big, terrible thing to face.
Have you had chemo leading up to this? If so, you’ve already experienced much of how it is. The chemo can make you feel rotten - but not everybody feels bad with it. I had a strong reaction, but if you look on the ‘undergoing stem cell transplant’ thread not everybody does at all. And funnily, the stem cell transplant itself is massively underwhelming! You just have a drip of cells, and nothing at all happens. However, the chemo can then kick in around about that time, and you’re also susceptible to infections because your bone marrow has been zapped. Those are the things that may trouble you.
Recovery therefore depends a little bit on the above factors, and also on previous treatment. I’d had two rounds of intensive chemo before the transplant and transplant chemo, so I was already thin and had lost muscle in my legs. I was in hospital for the transplant for 6 weeks, because I did get an infection towards the end. However, despite all this, I was able to walk out of the hospital unaided. (If you can, try to use your legs or do some squats whilst in hospital- it’s so important not to lose leg strength.)
Once I got home, I had trouble with the stairs (my husband had to push me up them by the bottom, ha ha) and I really had to work on standing and moving around to strengthen my legs. I cooked a lot because pottering in the kitchen helped with exactly that. But I think I was quite sofa-bound for about 3 weeks. Fortunately, my appetite came roaring back, so I ate like a horse, which probably helped.
Another thing which I think hastened my recovery - but which probably shouldn’t have happened - was that my husband had to go away for work. He’s a mariner, and he’d had 8 months off by this time, looking after our son whilst I was in hospital (4 months) or in between chemo rounds. Other than weak legs, I was healthy in myself, so at 5 weeks post my return home, he went back to sea! I was absolutely dreading this - it was a real risk, and left me with a huge task on my hands, of looking after our teenage son, our house and our dog whilst still recovering. But it forced me to push myself, and I went out and walked the dog and slowly built myself up, and we managed it. He’s away every other month, so I knew I had some respite to look forward to when he got home. However, I don’t recommend this tactic! But we had little choice. And I think it does show that if you’re healthy enough, you can push yourself to make a speedy recovery. 5 weeks from getting home I was cooking, cleaning, walking etc and managing on my own. And about ten weeks from getting home I started doing some HIIT exercise (a DVD at home.) I would have been back at work after about 3 months as I was well enough, but I lost my job just before getting ill, and with the pandemic, I’m very nervous about being out there. So I’ve found a small amount of work from home.
However, 6 months later I had a bit of a blip. I was off a lot of the medications which were suppressing things, and so I got shingles twice (and had to go back on aciclovir.) The glandular fever virus (EBV) reactivated in my body and I needed weekly drips for that, for a month. And I reacted to that drug. Plus a month-long cold. So had I been back at a workplace, I would have had a lot of time off. But an employer would have had to accept that.
But I’m past that blip now and feeling fantastic again. I feel normal. Better than I did before my diagnosis. That’s nearly a year post-transplant (Jan 20th.) Had I not had that three-month long blip, I can honestly say I was better after 3 months. But of course your immune system does take a year or so to gather some strength again. And everybody is so different. We all have our different struggles and successes. But just as an indicator, my recovery does show that with some luck, you can literally be on your feet again quite quickly. I’ve read that lots of other people have recovered quite quickly too.
I hope this helps you to feel less worried. It’s a horrible prospect to have hanging over you at Christmas - I remember that well. I hope you can relax with a glass of fizz perhaps, or with the company of your family, and forget about it for a moment or two.
If you need to ask anything else, please do. I’m so happy to help, because we’re a special family, us lot - we endure awful things mentally and physically, and no one else can understand quite what we go through. But people here do.
Wishing you strength and positivity this Christmas time, and lots of love. Xx
Hi @nbk112
Oh I’m so sorry you’ve got covid over Christmas, and just before your transplant. Wishing you a speedy recovery. Have they offered you the new antiviral drugs? I hope so.
Wishing you a Happy Christmas, despite all this going on for you. I hope you’re not having to isolate on your own.
Let us know how you are, if you have the energy. I feel the amount on your plate at the moment warrants much more support. Please let us know if we can help.
All the very, very best. X
Dear @nbk112, I am so sorry to hear that you are facing intensive treatment after Christmas. You also mentioned that you are COVID positive, how are you feeling with that? Please do get in touch if you want to talk things through, the Support Services Team are here Blood cancer information and support by phone and email | Blood Cancer UK. Take good care, Gemma