What does one need for SCT????

Hello,

My sister will be having a SCT.  She is scheduled to begin the process on September 16th. 

Can you please give advice about things you felt helped you during the procedure; maybe items that helped you during the long hospital stay. Also, how can we expect her to really feel? Will she be sick and miserable throughout the entire process?

I want to have things in order...things that will help her during the SCT. Also, did you enjoy visitors at the hospital? They expect her to be in atleast three weeks. 

Thanks and God Bless.

Danielle

From Anna,

Hi Danielle, She will be sick through some of it.  Unless things have changed since Dad did this almost 11 years ago.  They will do chemo before.  I don't remember how much.  She won't feel good with that.  Its really hard to tell someone cause everyone reacts different.  Can't remmeber if it was before or after, Dad ran a temp.  He was in the hospital for that.  We had just bulit a new house so instead of him staying in the hospital he was able to stay home until the temp. So I think the temp was after.  Again not sure.  We had to keep everyone away during that time.  Sorry I wasn't more help. Others here that have gone through it more recent can tell you more.

Good luck to her.

Your friend,

Anna

Hi Anna,

Thanks for the reply.  I totally understand about not being able to remember facts from 11 years ago...it's difficult for me to remember what happened last week.

From what I heard, I am assuming my sis will be sick for alot of this.  I just hope it is all worth it in the end.  Since she has been dx (Oct), it seems as if things have not gone smoothly.  We were hoping by this time she would have been done with her treatment and in recovery now. 

I am just wondering if she should have certain items in the hospital to help pass the time (or will she be sick for most of it).  Her doc said the worst part is being in the hospital for 3 weeks and having bordum set it.  I would rather her just be bored than sick for 3 weeks. 

Take care.

Danielle

Hi, it could not hurt to have visitors and maybe bring her some magazines or sit and read to her. I'm not sure what SCT stands for. I just hope she manages thru it. I'm recuping from stage 4 BC that metastasized in my lungs, liver and abdomen. I had two hospital stays in late 2008. I was very sick but did enjoy seeing visitors and having magazines to look thru to pass the time. I wish you and your sister many blessings and hope for a better future. take care.

Kathy in Ohio

From Anna,

HI Danielle, I'd rather be board to.

Your friend,

Anna

Hi Danielle,

Try to find out if her hospital room will have DVD/VCR access.  If so, you could bring movies for her to watch.  If she ends up by not feeling well, she might not feel like reading and watching movies will help the time pass.

Yes, it's all worth it in the end.  Your sisters goal is to get into complete remission or get the MM under control and stop it from getting worse. 

Prayers are with you.

Lois

Danielle, 

Look back at the question on 8/03 titled: 

Suggestions To Help With Side Effects From Sct And Neupogen 

I posted a fairly long answer about some of the things to expect with a SCT.  Others had some good suggestions as well.  Do you know what protocol your sister will do?  I am assuming this is an auto SCT (using her own stem cells). 

For the most part, I found the auto SCT to be not so bad.  I did get nauseated and threw up a few times but that mostly lasted just a couple days.  Can't imagine why they want to keep her in the hospital for 3 weeks.  I had the option of doing mine outpatient but decided to check into the hospital for the worst of it.  They sent me home in less than a week -- that was starting with the day of the melphalan infusions.  I did end up back in the hospital for a couple more days about a week later due to atrial fibrillation.  A lot of people end up with some kind of fever or infection and they want to watch that closely.

A few suggestions:  It is nice to have your own clothes to wear rather than a hospital gown (pajamas, sweats or anything else that is comfortable).  It is easier if the top buttons up the front since she will have to be dealing with IV lines.

My sister-in-law brought me videos to watch.  You will need to check to see what is available.  If you have DVDs instead and she has a laptop, she can probably watch them on that.  A compact DVD player can be purchased for pretty cheap if she doesn't have other options.  Volunteers came around a couple times a week with videos we could borrow and watch.

A computer is great to have.  Most hospitals now have wireless networking so that she could get on line to keep up or just for entertainment (a lot of tv shows are available for watching on line or she might like playing games).  I didn't have my own computer with me but there were computer stations on the floor that were available to use.  It just wasn't near as nice as being able to have one available to use in your room.

Books and magazines are good but I really didn't feel much like reading most of the time.  Books on tape might work better. 

Many people really like music.  There were a couple of channels on the tv that played relaxing music with nice scenic pictures that I listened to, especially when I wanted to sleep.  It would be nice to have her favorite music available with CD's or an i-Pod if she has one.

Visitors are great but be aware of what she wants.  Some people like having someone around all of the time.  Since I live alone, I like my privacy so I was fine with not having a lot of visitors.  It is nice to have someone there to walk with you.  At my clinic, they wanted us up walking around the floor several times a day. 

Check and see how the room will be set up.  In mine, there was a Murphy bed so that a visitor could stay over.  It might be fun for you to stay and have a slumber party a couple of times.  And, phone calls are almost always welcome.

Food -- most likely they will have her on a restricted diet (no raw fresh fruit or vegetables, no unpasturized dairy products, etc.).  Check into this before bringing in any food from the outside.  The hospital where I stayed had a really good menu and you could order what & when you wanted most of the day (6am to 10pm, I believe) -- more like a restaurant.  And the food was rather good.  Visitors could order from a separate menu and the prices weren't too bad.  You might want to join her for a meal now and then.  Ask if they have a guest menu.

She might want to take some things to make her feel more at home -- pictures of family, friends, pets, etc. or a special quilt or blanket or pillow.

Does she do needlework or knitting or some other craft project that is fairly compact?  Does she like to do jigsaw puzzles or sudoku or crossword puzzles?

Hope this gives you some ideas.  Let us know if you have some more specific questions. 

Janet

 Hi Danielle - You ask some great questions!  Your sister is lucky to have you on her side.

I loved having my wife and children visit during my stay in the hospital.  Some days I slept through most of their visits which bothered neither them nor me.  Having only one person visit is tough because you feel you have to stay awake and entertain the visitor - with two or more visitors they can entertain themselves, and go to eat together or whatever.....

Take along her own clothes.  You do not ever have to wear a hospital gown unless you have nothing else to wear.  And SLIPPERS.

Have your sister take along a non-alcoholic mouth rinse and use it VERY often.  It will help prevent mouth sores (I made it through without any).  Also have peppermints and lifesavers available to take away any bad taste or dryness.  My family brought me bottled drinks that needed no refrigeration to give me a variety of choices..

Some days you want to throw up all the time some days you feel fine.....I think everyone responds differently to the chemo.  I ate everything I could get my hands on the first few days before I started feeling the effects of the chemo.  That way when I wasn't feeling so well, I could avoid food without losing weight (something they check constantly).  

We put up pictures of the family all around and had a copy of the chart of blood counts enlarged and taped it to the wall so we could all see the progression of my inner strength returning.  It made me and them all feel better to watch the numbers rise.  Take different colored markers so you can highlight really important benchmarks.  Decorate the room simply but to make it hers.

I took along a laptop (they had wi-fi) and a magic jack and a cordless phone.  That way I could stay in touch with everyone without costing anyone anything.  It was great for letting me know when people were coming and to make sure they made it home safely.  I was also able to keep in touch with relatives that didn't live close by.  And surfing relieved the boredom.

Take along a paper and pencil and write down the names of your room cleaners, nurses, and food servers every day.  Calling them by name makes them feel good and I believe gets you better service.  And besides it is just a nice thing to do.

 Keep a log of everything you eat and do - including bodily functions you usually do not track.  They will ask you on Thursday if you had a bowel movement on Monday - whip out your log and tell them the exact time.  It somehow empowers you!  :-)  

If she is like me, she will be up at strange hours some days (from the meds, I think).  Having a book, or some simple needlepoint, or a puzzle book is really great for those times there is nothing on the tube and every normal person is asleep.

Make sure she takes advantage of the halls for walks when she is allowed.  Once locked in the room for isolation it seems like forever before they allow you out again.

Make sure she knows the hospitals emergency procedures for when she is in isolation.  We had two fire alarms when I was in, both in the middle of the night.  For the first one I dressed, masked, and gloved and stood by my door ready to carry my med pole down 18 flights if I had to.  No one had ever discussed emergency protocol with us.

Most important remember that whatever you are experiencing is NORMAL for you.  Vomiting today brings you one day closer to the end of the process.  Enjoy the experience and hope for the very best of outcomes.

Ok, I'll shut up now,

Blessings to you and your sister,

Garth

On 8/9/2009 Lil Sis wrote:

Hello,

My sister will be having a SCT.  She is scheduled to begin the process on September 16th. 

Can you please give advice about things you felt helped you during the procedure; maybe items that helped you during the long hospital stay. Also, how can we expect her to really feel? Will she be sick and miserable throughout the entire process?

I want to have things in order...things that will help her during the SCT. Also, did you enjoy visitors at the hospital? They expect her to be in atleast three weeks. 

Thanks and God Bless.

Danielle

 

Garth,

I love all of your advice! I will be having my Auto SCT Sept 11th and I bought this Jello like pictures that stick to the window.  This one is Nemo and bubbles that I can stick on the windows and make me smile! I have a salt water fish tank at home. Your ideas are great..I am already making a pile of clothes and such. .Gayle