[angeParticipant]

Hi All

My stem cell transplant is now booked at the University Hospital of Wales for Sunday 15 February, providing there is a bed available. Starting to get a little nervous now with only a few days to go! I would welcome any last minute advice on what to take etc.

Best wishes
Andrea xx

[cartdawParticipant]

Hi Andrea hope all goes well for u. I may be going down the same route so please let me know how u get on. My para proteins are up to 24 so bloods to be rptd in 1 month.  If light chains r high May start treatment due to new guidelines although I’m well with no bone damage

[cartdawParticipant]

My name is dawn Cartlidge  god knows y I put my username as cart daw lol

[angeParticipant]

Thanks for your kind message Dawn, I will let you know how it goes. My paraprotein only got down to 11.5 after 9 cycles of CTD. I think this may be because I have a Chromosome 13 deletion which may respond better to Velcade which I still have for future use.

Best wishes to everyone

Andrea

[rebeccaRParticipant]

Hi Andrea, All the best for Sunday – I had mine over Xmas 14 months ago and don’t come on here much now – just enjoying the remission/calm I guess. There is plenty of advice if you search under this topic but things I would take:- cheap packs of underwear from Asda or primark to throw away – I’m sure you’ve heard of the S&D time (not nice but doesn’t last forever remember), a snuggly fleece- the rooms are very cold due to the ventilation system of keeping all germs at bay. Little pots of rice pud, custard, jelly in case you have a sore mouth or can’t eat much and want to keep trying bits of food. A count down calendar from when you go in – aim for 18 days to be in and every day cross the day off – a bit like a prison sentence. No matter how rubbish you feel per day when you cross it off and see you’re 1 day closer it’s a big lift. Just take it all in bite size pieces, a day at a time, 16 -18 days is nothing – the first few you won’t feel rough then you’ll get the worse bit and you’ll know yourself when things subside and you pick up – 18 days is nothing in the grand scheme of things and being drug free and resuming “normality” so just try and focus on the short time scale that it really is. I had some audio books and couldn’t settle to Tv etc and found them quite restful (did the Twilight saga!). Oh and a baby soft tooth brush.
Hoping you get an easy time of it, Rebecca

[angeParticipant]

Thanks Rebecca, I have bought a nice fleece blanket and also a fluffy warm bed jacket. My daughter is going to make a countdown calender I like that idea! I have lots of books so hope I will be up to reading. That’s really good you are enjoying your remission,long may that continue!

Best wishes

Andrea

[MicheleParticipant]

Hi Andrea. I had my SCT 3 years ago and am trying to think back for things that may help you. I found my laptop a lifesaver and had free access to the hospital internet being as I was in isolation. Also had free TV. I took my knitting in but soon found that concentration levels are too low to do anything like that. I had a book, but suggest you have some bitesize reading like magazines and newspapers.
Take some nice body lotion, handcream and a big pack of babywipes (you’ll definitely need them!)
I also had some lemon barley water and soda water to drink. Your appetite will be all over the place, so eat as and when you feel like it, but drink plenty. I found milk good for when my throat was uncomfortable. I couldn’t drink anything hot or acidy. It was too painful for a few days.

I won’t pretend the experience is pleasant. It’s not, but I can assure you that if you leave you dignity at the hospital entrance, let the staff and the drugs do their work, it’s something you can tough out and come out the other end knowing that time will soon get you back on your feet and living normally again. The isolation is probably the worst bit and I found the experience affected me a lot emotionally.

I’ve been drug-free for over 2 years now and am still in complete remission. I wouldn’t know I’d got MM and live life to the full.

The very best of luck to you Andrea. Let us know how it goes.

[wifeofParticipant]

Hi Andrea, my husband had his SCT last September I got him to suck ice pops when he was having his Melphlan infusion and thankfully he had no throat problems at all.  I asked him if there was one thing he would recommend from his experience and it would be this.

Good luck over the coming weeks

Suzi

[angeParticipant]

Thanks Michele and Suzi, I feel alot better with these tips! All I have to do is ring tomorrow morning to check there is a bed available!

Best wishes

Andrea

[VickiParticipant]

Best of luck Andrea!

The ice pops is a really good tip! Also plenty of soft food. Plenty to drink if you can.

Vicki and Colin x

[angeParticipant]

Thanks Vicki and Colin. I have a double room and bathroom to myself, wifi sorted and central line put in. All good so far!

Best wishes
Andrea

[wifeofParticipant]

Don’t forget those ice lollies they really did the trick.

Good luck keep us posted as other people say it may not be a walk in the park but it is doable.

Suzi

x

[bandityogaParticipant]

Hope all goes well Andrea and you get a good remission.

Maureen x

[pc452Participant]

Hi Andrea,

Just spotted your post that your SCT was going to happen, indeed will have happened, in February after all. Hope it’s going well and hasn’t been too bad going through the “rubbish” phase that everyone warns about!

The very best of luck with the outcome. Spring and, with luck, better weather, will greet you when you’re discharged. Enjoy!

Peter

[mattkboParticipant]

Hi Andrea,

I have also just seen this and wanted to say hello, I hope your SCT has / is going smoothly. I had mine in Dec’13. Take your time to recover, you will get there, one day at a time.

Matt

[Author]

Posts