[debonthewebParticipant]

It’s only a few days now and I am pretty anxious. I have been through two rounds of DT-PACE now and the time has now come for my SCT. Please could anyone offer me any last minute advice. Is there anything I should remember to take into hospital with me? I am being treated at UCLH. My myeloma seems to respond pretty well to treatment but the myeloma seems to come back rather quickly. Hopefully it will be a different story after the STC.
Thank you and best wishes to you all
Deborah x

• This topic was modified 9 years, 10 months ago by  debontheweb.

[davidbrParticipant]

Hi Deborah

You are in for a bit of a tough time but don’t worry it is not too bad and you will get through it. I had my SCT just before Christmas 2013 about 7 months ago. I am in partial remission and currently on maintenance drugs mainly 10mg of Revlimid but I have to take up to 32 pills a day. Mostly to counter the side effects of chemo. These include pain killers, laxatives, aspirin, antibiotics etc. I have 2 crushed vertibra as a result if my Myeloma so my back is quite painful most if the time.

I would take a laptop or iPad if you have one I found it invaluable for keeping in touch with every one by message and FaceTime. Takes some wet wipes you will need them, something to suck you will get a sore dry mouth. Something you really like to eat like chocolate as the loss of appetite is unbelievable and most food will turn your stomach especially hospital food. Take lots of loose light clothing and a pair of Crocs as most hospitals are quite warm. Also ear plugs as the nurses bless them crash and bang about all night

[davidbrParticipant]

Hope your SCT goes well and you achieve complete remission.

Best Regards David 🙂

Ps. I put this on the bottom of my previous post but it was left off when I hit post.

[debonthewebParticipant]

Thank you hat is most helpful xxxx

[rebeccaRParticipant]

Hi Deborah, I had mine at xmas (just 52) and can assure you I am totally back to normal in every way including fitness now. As a woman I think you will have covered all bases – unlike David my room was freezing (they kept telling me it was because it was sucking all the germs out? but I wasn’t convinced – one thing I would have loved to have had was a little snuggly fleece to wrap myself in – for both warmth and comfort. I researched everyones advice and took little pots of jelly, rice pudding, custard in the event of sore mouth or not being able to eat and brought them all home as didn’t need them – in hindsight a stash of chocolate would have been much better. Hearing the horror stories of the dreaded runs I decided to buy lots of cheap knickers to throw away ( planned to be in 18 days and took way over 100+ (must be a womans thing and not wanting men to do dirty washing!) hasten to say that bit wasn’t too bad and probably needed just 3 packs to throw away! Now have a load of primark knickers that were a tad too small anyway and very cheap that I can’t off load to anyone!. I was never tired or sleepy but very bored with TV and couldn’t settle to books but did enjoy books on CD – listened to the whole of the Twilight sage which lifted me and wasn’t too taxing – you may prefer something a little more intellectual but I wanted something easy to follow with a feel good factor. Think I would have also liked knitting or something crafty to do as it’s a long, tedious time if it doesn’t make you sleepy. I also took in a kind of count-down board to mark off each day. They tell you to expect to be in 3 weeks but later told me this was so people didn’t get disappointed and they said most people go home after 2 1/2 weeks. I decided to choose 18 as my count down calendar (thought 16 may be pushing it and I was actually in 18). I can’t tell you how good it was to cross a day off and know there was only X left, when I had a rubbish day it was great to tick the day off and know I was 1 day closer to home. Measuring time in days felt good, achievable goals, guess I treated it as a jail sentence hoping for a shorter stay for good behaviour – but seriously it was a great psychological boost to visibly tick off days and count down to home. Nothing seems unbearable broken down into bite sized chunks. Good luck with it all and trust me it’s nowhere near as bad as you think it will be. Wouldn’t hesitate to do it again if necessary.

Rebecca

[SalParticipant]

Hi Deborah,

You are about a month ahead of my husband, I think. He’s just gone in today to start his 3rd cycle of DT-PACE on Monday, with stem cell harvest booked for 21-22 July, all being well.

I’ve been saying to him that he is better prepared for the transplant now that he has had the experience of feeling grotty on DT-PACE, which has hit him far harder than the 5 cycles of  VCP/D. I don’t know if I’m right, but I think it helps if you give yourself some credit and say “I’ve already got through x,y and z, so I can get through this”.

Of course I’m only dealing with it second-hand, which is much easier.

In any case, I wanted to wish you well and hope that it isn’t too bad, and the time goes quickly. I’ll be thinking of you this week.

Sarah

[PerkymiteParticipant]

Hi Deborah, Firstly the best of luck with your SCT.

When I had mine in 2010 I thanked the lord I had taken in my Laptop and Mobile phone. I would otherwise have been bored to death! ~Do not forget their chargers.

I had a really bad sore mouth and found great difficulty in eating anything, which all tasted and smelt fowl anyway. A Thai cleaner, who I got friendly with, made me a drink, with body building powder(cannot think of the name), Milk, ice cream and Fruit which she made into a smoothy. I found sucking this through a straw was great. She made me two a day.

Kindest regards – Vasbyte

David

[tomParticipant]

Hi Deborah

I had mine in 2009, got four years out of it and that was great, yes I was bloomin cold in the room should have taken my throw in 🙂

Mouth wash now I used bottles of it every time i went to the loo, walked past it thought about the loo I mouth washed (they will give you more lol) , cant emphasise enough to use moth wash as often as you can am sure i was doing two per hour lol, but my mouth was OK (Ish) not as harsh as some i have spoke to.

Take one day at a time and do as your body tells you, if it says sleep then sleep no matter who has come to visit.

Good Luck on your road to remission

 

Love Tom Onwards and Upwads xx

[mhnevillParticipant]

Hi Deborah

Your SCT should be over now. Love and prayers for a gentle landing and a long remission.

Mavis x

[tallulah55Participant]

UCLH seems such a good hospital with a very good record for SCTs, so I hope all is going well for you. Kevin was admitted to the ward there in November last year whilst he was ill with pneumonia as at that time it was thought he had Waldenstroms Macroglobulinaemia and the national expert in that, Dr D’Sa, practices from there. It is a lovely place, with wonderful views across the London skyline on the high up Haematology floor, which I’m sure you will spend a lot of time gazing at over the next few days.

As I said to Kevin,whilst he was recovering from his SCT, each day that passes is a step nearer to getting back to better health and I wish you well, all too soon the time spent there will be the past with the bright future upon you. Nicki

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