I am a 56 year old white female diagnosed with multiple myeloma in October 2015. Plan is for inpatient autologous stem cell transplant in May 2016. I live alone and hope to be able to cater to my own needs post-transplant.
Has anyone been their own caretaker?
Once home, will I be able to take care of my basic needs – hygiene, meds, monitoring (temperature), providing sustenance?
I am cleaning and stocking my home now in advance of admission, essentially creating a survival shelter.
I would like to hear from anyone who has been in the position of not having a spouse or family to rely on.
Forums
Re: Doing a stem cell transplant without a caregiver
I did have a caregiver, my sister, for 6 weeks. I took care of all of my personal care with no problems. My sister did the driving, shopping for food, and the cooking. And, she provided company, which was appreciated since doing a whole lot in the community was limited by fatigue.
I think that the hardest thing for me was going to the doctor's office a couple of times a week for about 4 weeks. It was really fatiguing at first. I know that I wouldn't have had the stamina to drive, wait in the waiting room for my appointment, get bloodwork done, and have my appointment during the first few weeks at home. So, if you can arrange for a friend or neighbor to drive you to your appointments, that would be helpful. Talk with the social worker at your cancer center and find out if there are any meal delivery programs in your community that you would be eligible for. If not, you can probably order food to be delivered to your home from one of the grocery stores where you live. That's also another thing that you can ask friends to do for you.
Have you talked with the social worker about what services there are in your community that might help you when you get home? You won't need someone with you 24 hours a day, but you should have someone checking on you at least once a day to make sure you have what you need.
Good luck figuring it all out,
Nancy in Phila
I think that the hardest thing for me was going to the doctor's office a couple of times a week for about 4 weeks. It was really fatiguing at first. I know that I wouldn't have had the stamina to drive, wait in the waiting room for my appointment, get bloodwork done, and have my appointment during the first few weeks at home. So, if you can arrange for a friend or neighbor to drive you to your appointments, that would be helpful. Talk with the social worker at your cancer center and find out if there are any meal delivery programs in your community that you would be eligible for. If not, you can probably order food to be delivered to your home from one of the grocery stores where you live. That's also another thing that you can ask friends to do for you.
Have you talked with the social worker about what services there are in your community that might help you when you get home? You won't need someone with you 24 hours a day, but you should have someone checking on you at least once a day to make sure you have what you need.
Good luck figuring it all out,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Doing a stem cell transplant without a caregiver
Hi Goingitalone,
My husband was my caretaker for 4 weeks, but I did the transplant as an outpatient. So I needed my husband to drive me to the doctor office, but I did all my personal care myself. The first week my husband did some cooking, but after that I did everything myself.
Just pace yourself. If you get tired, then rest. Everything else can wait.
I agree with Nancy that you should have someone come to check on you on the daily basis just in case you need help with something.
Good luck with the transplant.
Kaew
My husband was my caretaker for 4 weeks, but I did the transplant as an outpatient. So I needed my husband to drive me to the doctor office, but I did all my personal care myself. The first week my husband did some cooking, but after that I did everything myself.
Just pace yourself. If you get tired, then rest. Everything else can wait.
I agree with Nancy that you should have someone come to check on you on the daily basis just in case you need help with something.
Good luck with the transplant.
Kaew
-
Kaew
Re: Doing a stem cell transplant without a caregiver
Hello. I feel badly that you'll be handling your post transplant days alone. It's great that you're planning ahead. Physically, I think you'll do fine, but it will be good to have an emergency back up plan in case you develop unforeseen problems, such as an infection.
I found the support and encouragement of family and friends to be as important as any actual help they provided. It's normal to feel a little down as you recover and adjust to the temporary limitations that you'll have. Be sure to accept offers of help and try to stay in touch with friends and others who will offer encouragement. If actual visits aren't possible, phone calls and email are almost as good. You'll probably meet other patients on the transplant unit, and staying in touch with them through email can really help as you encourage each other.
Staying connected with others through this forum will give you a sense of community so be sure to do that. Remember that many readers and contributors here truly do care and will be concerned and interested in how you're doing. I, for one, will be checking back to see how you're doing, and I'm sure others will also. Take care and best wishes for a successful transplant and quick recovery!
I found the support and encouragement of family and friends to be as important as any actual help they provided. It's normal to feel a little down as you recover and adjust to the temporary limitations that you'll have. Be sure to accept offers of help and try to stay in touch with friends and others who will offer encouragement. If actual visits aren't possible, phone calls and email are almost as good. You'll probably meet other patients on the transplant unit, and staying in touch with them through email can really help as you encourage each other.
Staying connected with others through this forum will give you a sense of community so be sure to do that. Remember that many readers and contributors here truly do care and will be concerned and interested in how you're doing. I, for one, will be checking back to see how you're doing, and I'm sure others will also. Take care and best wishes for a successful transplant and quick recovery!
Re: Doing a stem cell transplant without a caregiver
Thank you all for your comments. I am encouraged that most of you think I will be able to take care of my physical needs.
Transportation has been a problem. I have investigated all options and am currently trying to line up several potential drivers, including volunteers from the American Cancer Society. Admittedly, I would be less concerned if I had a designated driver (whose health status I could be confident of).
I can have family from out of state check in with me via phone or email daily and think this will be a reassuring connection. Communication with the myeloma community thru this forum would also be very welcome.
How long did it take any of you before you felt comfortable driving?
Transportation has been a problem. I have investigated all options and am currently trying to line up several potential drivers, including volunteers from the American Cancer Society. Admittedly, I would be less concerned if I had a designated driver (whose health status I could be confident of).
I can have family from out of state check in with me via phone or email daily and think this will be a reassuring connection. Communication with the myeloma community thru this forum would also be very welcome.
How long did it take any of you before you felt comfortable driving?
-
Goingitalone56
Re: Doing a stem cell transplant without a caregiver
Hi Goingitalone,
My doctor wouldn't allow me to drive until 90 days post transplant even though I feel strong enough to drive after a month and all my nausea has gone away. I think that is just a precaution because sometimes you might get light headed. So just to be safe, you should have someone else do the driving . Make sure you consult with your doctor first before you plan to drive, let him or her say it's OK for you to drive.
Good luck,
Kaew
My doctor wouldn't allow me to drive until 90 days post transplant even though I feel strong enough to drive after a month and all my nausea has gone away. I think that is just a precaution because sometimes you might get light headed. So just to be safe, you should have someone else do the driving . Make sure you consult with your doctor first before you plan to drive, let him or her say it's OK for you to drive.
Good luck,
Kaew
-
Kaew
Re: Doing a stem cell transplant without a caregiver
Dear Goingitalone56,
No you should not be going through post ASCT alone and without help.
Where do you live? If you live on Cape Cod, Massachusetts, I would be happy to help you out.
Melissa
No you should not be going through post ASCT alone and without help.
Where do you live? If you live on Cape Cod, Massachusetts, I would be happy to help you out.
Melissa
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Doing a stem cell transplant without a caregiver
Hi Goingitalone,
I concur with Melpen that it could be difficult to try this on your own. In your situation, would it be feasible to do the transplant as an inpatient? That way, you would be getting medical supervision around the clock. If not, best to actually check with someone every day, and keep your cell phone handy in case of problems. I am sure that your transplant team could give you some advice about this. There were certain situations where we were advised to call the transplant unit, even though I was an outpatient for the most part.
I didn't really drive much until my venous central line was removed, around the 100-day mark. I found that the seat belt shoulder harness interfered a bit with the central line, but others I talked with did not have that same concern.
I concur with Melpen that it could be difficult to try this on your own. In your situation, would it be feasible to do the transplant as an inpatient? That way, you would be getting medical supervision around the clock. If not, best to actually check with someone every day, and keep your cell phone handy in case of problems. I am sure that your transplant team could give you some advice about this. There were certain situations where we were advised to call the transplant unit, even though I was an outpatient for the most part.
I didn't really drive much until my venous central line was removed, around the 100-day mark. I found that the seat belt shoulder harness interfered a bit with the central line, but others I talked with did not have that same concern.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Doing a stem cell transplant without a caregiver
Thank you very much for the offer, Melissa. I do live in Massachusetts, but remote from the Cape. My transplant will be done as inpatient. I was told that I would not be going home with a line in and would not need visiting nurse services.
Since everyone's experience is different, it is difficult to plan for all contingencies. We have probably all experienced fear of the unknown. Knowing what others encountered helps me prepare, and that helps to alleviate some of the anxiety surrounding the transplant, so I am very grateful to hear from all of you. Thank you all for taking the time to write.
Since everyone's experience is different, it is difficult to plan for all contingencies. We have probably all experienced fear of the unknown. Knowing what others encountered helps me prepare, and that helps to alleviate some of the anxiety surrounding the transplant, so I am very grateful to hear from all of you. Thank you all for taking the time to write.
-
Goingitalone56
Re: Doing a stem cell transplant without a caregiver
Hi Goingitalone -
I likely could have done fine by myself at home after my autologous stem cell transplant. One thing that would have helped would have been for me to stay on the couch the first day back. I overdid things, and that had me pretty beat for a couple of days. Pacing myself would have made it easier. After those first few days, I would have been fine to drive if I'd needed to.
I think the most important thing would be to have transportation available at any time. If you spike a fever, then you may need to get to the hospital posthaste.
Apart from that, it would be good to have someone stop by on a daily basis just to check in with you and make sure there's nothing you need. As you've mentioned, everyone reacts differently to this. You'll need contingency plans to handle the possibility that you might be too fatigued to get out of bed.
I likely could have done fine by myself at home after my autologous stem cell transplant. One thing that would have helped would have been for me to stay on the couch the first day back. I overdid things, and that had me pretty beat for a couple of days. Pacing myself would have made it easier. After those first few days, I would have been fine to drive if I'd needed to.
I think the most important thing would be to have transportation available at any time. If you spike a fever, then you may need to get to the hospital posthaste.
Apart from that, it would be good to have someone stop by on a daily basis just to check in with you and make sure there's nothing you need. As you've mentioned, everyone reacts differently to this. You'll need contingency plans to handle the possibility that you might be too fatigued to get out of bed.
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
17 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects