Hi all. My name is Melissa and my dad was diagnosed with multiple myeloma earlier this year. He got the diagnosis three weeks after the death of my mom, and two months after the death of his brother.
He has handled his diagnosis well so far. He was originally slated to go in for SCT in July. However, he had a bout of diverticulitis and needed to have colonic resection. Thankfully, that did not happen while he was undergoing SCT. He is now set up for admission tomorrow.
The hospital he is far enough away that I will not be able to visit him during the week because of work, and I can't take off, if I can help it, because I want to save those days for after he comes home and needs help at home. My brothers will be able to visit during the week and weekends as well. We will also be able to Skype with him daily, which I know he will look forward to because that is the only way he will be able to see my daughter (10 months old) until he comes home, because no kids are allowed at the hospital with the current enterovirus outbreak.
I guess I am just wondering what to expect, as well as any advice about things I can bring him or do for him that may help us all get through this. I have already gotten him some chemo caps and will iron on a superman decal for him to have when he loses his hair. I am wondering if I should get him some comfy pajamas or something like that to wear while he is there. He never had to buy his own clothes, etc, before my mom died, and he keeps saying he has everything he needs, but I am worried he doesn't have what he needs to make himself as comfortable as possible.
Any words of advice/encouragement are greatly appreciated!
Forums
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mapales2 - Name: Melissa
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 64
Re: Dad undergoing autologous SCT
Hi Melissa,
Hope all goes well for your father and your family too. It sounds like you are really well organized for visiting and keeping in touch during the hospital time. He will probably want to walk around the unit in order to get his energy back, and so he might like a comfortable sort of 'yoga' outfit to wear.
Best wishes!
Hope all goes well for your father and your family too. It sounds like you are really well organized for visiting and keeping in touch during the hospital time. He will probably want to walk around the unit in order to get his energy back, and so he might like a comfortable sort of 'yoga' outfit to wear.
Best wishes!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Dad undergoing autologous SCT
Hi Melissa,
Welcome to the forum.
You may have found this already, but if you go to this posting:
"Useful links to existing forum discussions"
and go to the bottom to a section titled
"Stem Cell Transplant Experiences of Beacon Forum Members",
you will find there six different discussions here in the forum that contain postings that people made during their stem cell transplants (and shortly before and after).
Those discussion threads may be very helpful to you and to the rest of your family.
Best of luck to your father!
Welcome to the forum.
You may have found this already, but if you go to this posting:
"Useful links to existing forum discussions"
and go to the bottom to a section titled
"Stem Cell Transplant Experiences of Beacon Forum Members",
you will find there six different discussions here in the forum that contain postings that people made during their stem cell transplants (and shortly before and after).
Those discussion threads may be very helpful to you and to the rest of your family.
Best of luck to your father!
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mapales2 - Name: Melissa
- Who do you know with myeloma?: Dad
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 64
Re: Dad undergoing autologous SCT
Hi Melissa,
Good luck to your Dad with the SCT.
In thinking about your question, one thing I bought before my transplant that came in handy was a decent pair of bedroom slippers. I don't think I've seen that mentioned anywhere else here.
Also, I tried to wear my own clothes each day, rather than pajamas (wore those at night, never a hospital gown), just because it made me feel a little more normal being up and out of bed and in my own clothes. But that might just be me. If your Dad does wear his own clothes like I did, make sure the front of the shirt has buttons, rather a t-shirt, in order to allow easy access to the port.
Mike
Good luck to your Dad with the SCT.
In thinking about your question, one thing I bought before my transplant that came in handy was a decent pair of bedroom slippers. I don't think I've seen that mentioned anywhere else here.
Also, I tried to wear my own clothes each day, rather than pajamas (wore those at night, never a hospital gown), just because it made me feel a little more normal being up and out of bed and in my own clothes. But that might just be me. If your Dad does wear his own clothes like I did, make sure the front of the shirt has buttons, rather a t-shirt, in order to allow easy access to the port.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Dad undergoing autologous SCT
I'm at Day 4 post transplant and very happy that I bought my own loose fitting clothes, slippers and pyjamas to hospital. Perhaps, like Mike, it helps me to be up and about in something more normal than the hospital gown, which is really uncomfortable. I seem to be in a significant minority in doing this, which I find a bit surprising.
Good luck to your Dad with his SCT
Good luck to your Dad with his SCT
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Villa fan - Name: Paul Gater
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 56
Re: Dad undergoing autologous SCT
I found that the "pajama pants" that are so popular right now were great for being in the hospital. Easy on/easy off (important once the diarrhea kicks in...). Slippers and loose button down shirts are also a must. Caps are nice but I only wore them afterwards when I went outside (the insulating quality of hair is greatly understated, my head was always ccccold last year.).
Snacks that are easy to tolerate with nausea are nice. A friend brought me some ginger cookies which were one of the few things that I could tolerate.
If he likes movies and such, I was allowed to bring in a portable DVD player that I could hook up to the TV. It helped greatly to pass the time and reduce the boredom.
Hope this helps and I wish him good luck! I had mine a year ago on Nov. 10 and I have never regretted it.
Snacks that are easy to tolerate with nausea are nice. A friend brought me some ginger cookies which were one of the few things that I could tolerate.
If he likes movies and such, I was allowed to bring in a portable DVD player that I could hook up to the TV. It helped greatly to pass the time and reduce the boredom.
Hope this helps and I wish him good luck! I had mine a year ago on Nov. 10 and I have never regretted it.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Dad undergoing autologous SCT
Two other thoughts while I'm waiting for my white cells to disappear after melphalan.
Hospitals are generally quie noisy places and I was in a shared room for the first few days. Disposable earplugs really help cut out the ambient noise.
Bring your own pillow. Hospital pillows can be thin or just not as good as your own. Your dad is likely to be sleeping a lot so he might as well be comfortable.
Hospitals are generally quie noisy places and I was in a shared room for the first few days. Disposable earplugs really help cut out the ambient noise.
Bring your own pillow. Hospital pillows can be thin or just not as good as your own. Your dad is likely to be sleeping a lot so he might as well be comfortable.
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Villa fan - Name: Paul Gater
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 56
Re: Dad undergoing autologous SCT
Everyone who posted so far has made good suggestions. I took comfortable clothes that I could layer if I got cold or too warm. Sneakers for walking the halls were a must for me. Pajamas with button down front are good. I also brought my own pillow and a wool throw for my bed and for use when I was sitting in the chair in the room. I was out of bed all day, every day except for the day that I had my stem cells reinfused. I had been given a sedative that made me sleepy all day.
I also brought my laptop, iPod, cell phone, DVD's, and eReader. I bought the eReader specifically for the transplant so that I didn't have to lug a lot of books with me to the hospital. I love to read and did a lot of reading while in the hospital. Skyping daily is a good idea. One of my neighbors had set up Skype on my home computer and Skyped my cats to me a couple of times. That made me feel really good since I missed them a lot.
You are wise to save your vacation time for when your father comes home. He will want some company when he gets home and you will be able to prepare meals that he can eat then, too. In the hospital I found that having too many visitors for too long was really tiring. My sister who had come to stay with me wasn't able to visit daily because of blizzards while I was in the hospital. Her phone calls were appreciated and filled the void more than enough. Since I worked in the health system where I was being treated a few of my colleagues would drop in for a few minutes when they had a break in their schedule. These short visits were appreciated and more than enough to make me feel remembered.
I pray that your father has an easy time with the transplant. All the best to all of you as he goes through the transplant and recovery.
Nancy in Phila
I also brought my laptop, iPod, cell phone, DVD's, and eReader. I bought the eReader specifically for the transplant so that I didn't have to lug a lot of books with me to the hospital. I love to read and did a lot of reading while in the hospital. Skyping daily is a good idea. One of my neighbors had set up Skype on my home computer and Skyped my cats to me a couple of times. That made me feel really good since I missed them a lot.
You are wise to save your vacation time for when your father comes home. He will want some company when he gets home and you will be able to prepare meals that he can eat then, too. In the hospital I found that having too many visitors for too long was really tiring. My sister who had come to stay with me wasn't able to visit daily because of blizzards while I was in the hospital. Her phone calls were appreciated and filled the void more than enough. Since I worked in the health system where I was being treated a few of my colleagues would drop in for a few minutes when they had a break in their schedule. These short visits were appreciated and more than enough to make me feel remembered.
I pray that your father has an easy time with the transplant. All the best to all of you as he goes through the transplant and recovery.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Dad undergoing autologous SCT
Hi Melissa,
Wishing your father the best for his SCT and a speedy recovery.
Nancy is right about keeping visitors to a minimum. Social media, skype and cell phones are great for keeping in touch. Because I was out of town for my transplant, I only had a couple of regular friends and family who called in, and they were great about staying away when sick. It meant I never got sick, spiked a temp and was out on day 14 and home. And an E-reader or tablet are good as you can download books as you need them.
At our hospital we were only allowed individually wrapped snacks brought in due to risk of infection. Comfortable low maintenance clothes that can go in dryer (in NZ we use clothes lines most of the time) are the best. My track pants shrunk in the dryer, and my family thought it was hilarious.
And Paul is right about the pillow, hospital ones are awful. We only have horrible cotton blankets in our hospitals so I took a nice one of those as well.
Encourage your father to get up and walk around and do as much as he can as your muscles disappear fast when you lie in bed, but to be safe, have someone with him if he feels unsafe going for a walk because a fall would be a disaster.
While you can't be there for him during his hospital stay, he will need and appreciate your support when he gets home.
Wishing you all the best,
Jen
Wishing your father the best for his SCT and a speedy recovery.
Nancy is right about keeping visitors to a minimum. Social media, skype and cell phones are great for keeping in touch. Because I was out of town for my transplant, I only had a couple of regular friends and family who called in, and they were great about staying away when sick. It meant I never got sick, spiked a temp and was out on day 14 and home. And an E-reader or tablet are good as you can download books as you need them.
At our hospital we were only allowed individually wrapped snacks brought in due to risk of infection. Comfortable low maintenance clothes that can go in dryer (in NZ we use clothes lines most of the time) are the best. My track pants shrunk in the dryer, and my family thought it was hilarious.
And Paul is right about the pillow, hospital ones are awful. We only have horrible cotton blankets in our hospitals so I took a nice one of those as well.
Encourage your father to get up and walk around and do as much as he can as your muscles disappear fast when you lie in bed, but to be safe, have someone with him if he feels unsafe going for a walk because a fall would be a disaster.
While you can't be there for him during his hospital stay, he will need and appreciate your support when he gets home.
Wishing you all the best,
Jen
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
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