Resources

Survivors' Guide for Bone Marrow/Stem Cell Transplant
What to Expect and How to Get Through It

Coping Emotionally

For some, going through the transplant is extremely difficult emotionally, whereas others find it easier than they expected. Some people are relatively alert and active during the transplant whereas others suffer greatly. Giving up control and losing one’s independence and privacy is very problematic for many. Experiencing physical discomfort and adapting to physical and emotional changes can also be extremely taxing. In some cases, the medications you will take may affect your mood. Some patients find that while going through the transplant they lash out at the people who are closest and dearest to them. Dealing with a changed status and new role in the family may be difficult. You may find that other people are suddenly too protective or, in other cases, not as understanding as you wish. Taking it one day at a time and remembering to be gentle with yourself and others is helpful. Here are some excerpts depicting the experiences of different transplant patients: The transplant was frightening because I had been told that I could have potentially fatal complications arise from the procedure. It was very difficult being separated from my family for such a long period of time, especially since I couldn’t see my youngest until the very last week. I coped by constantly using the telephone as a life-line to my family... .the VCR tapes that my husband made for me helped me cope.

Suddenly becoming dependent on others was very difficult. Having no real privacy or independence and just dealing with the fear of something going wrong was hard. Not being touched and hugged and constantly worrying about some unseen bacteria was emotionally draining. I coped by accepting the situation and taking pleasure in what I could within the confined context of a hospital room.

Things that helped me through difficult periods were thoughts about the things that I would do if and when I got out of the hospital. I listened to Guided Imagery and Affirmations tapes every day to help me relax and fall asleep.

The worst thing I did to myself was think I had to be strong all the time. As scary as it is to let yourself cry and feel your feelings, it is the best thing you can do for yourself and the people around you. I pushed people away because it was too scary to feel my pain. My way of being in control was holding in too much. I recommend others to let it out with family, friends, support groups or therapists ... You owe it to yourself, you’re worth it. Be proud of your story, it is pretty incredible.

I guess during the difficult times I drew on my inner resources, imagination, contact with my husband, videos, a few favorite TV shows. I also looked forward to visits on Sunday from a volunteer who had survived a transplant. She was a major inspiration. I also had a rigorous routine to follow to keep my body sterile and that took up time.

I found it helpful to talk to someone other than family. They can be unbiased and can let you get a lot off your chest without hurting anyone. One of the things that helped was to get to know patients on the floor and talk about my feelings with them.

Make Your Needs Known--Be Assertive
Generally, the medical staff and your loved ones will want you to feel as comfortable as possible and will try to accommodate your specific needs and preferences. Make sure to articulate your preferences and needs to those around you. Things that may seem obvious to you may not be obvious to others. Let people know what you would like—what kind of food, what kind of schedule, what kind of care. Ask what your options are and find out what services are available to you.

It is not uncommon for the members of your medical team and other staff members to neglect to tell you about various services and options that are available to you. If you are interested in a certain service that was not mentioned, ask to find out if it can be made available. Remember, it never hurts to ask.

If you like your privacy respected, put a sign on your door requesting that medical personnel knock before entering. Or if there are certain hours that you would prefer not to be disturbed, let the staff know. If there are certain times of the day that you would like to be disconnected from your medication pump, discuss this with your nurse and organize a medication schedule that will allow you to be free of the pump during certain hours. If you are a vegetarian and the hospital menu is geared to meat eaters, see what can be done to accommodate you. One patient writes:

As a vegetarian, there was almost nothing on the menu that I could eat. After I made my needs known, several new items were added to the menu and my family was permitted to bring me food, even though I had not yet engrafted.

If you would like to have your spouse or parent stay the night in your hospital room, request a bed for them or buy a small folding camping bed and bring it to the hospital room. If having an overnight guest in the room is not allowed, see whether an exception can be made as was done in the case of the following patient:

My fiancee spent every night of my hospital stay with me during the transplant. When I returned to my home town, and had to be hospitalized again because of graft-versus-host disease, we both insisted that he stay in my room even though it was against the hospital policy. We knew that in my case there was no medical reason for him not to do so. The hospital staff was reluctant at first, but finally agreed. Having him there was a great source of comfort.

Communicate with your doctors and nurses. If there is some aspect of your care that you are not satisfied with, make this known, either by speaking directly to a member of your medical team, to a person in charge, or ask your caregiver to express your concerns. One patient writes:

When one of my doctors delivered information in a manner that was highly insensitive, my boyfriend and parents called him up to complain. It was great to have them as advocates because it meant that I didn’t have to alienate my doctor. I continued being a “nice” patient, but he got the message anyway.

Maintain a Sense of Humor
Laughter and a good attitude can be powerful sources of support and healing. Clearly if you are not feeling well, this can be quite a challenge. To the extent possible, try to incorporate some fun into your days. Rent some funny movies or ask friends and family to send you videos of themselves. If you like to dance, turn up the music in your room and dance a jig or two. Try to incorporate a few things you enjoy into your day:

What helped me keep a positive attitude during the transplant was the realization that every day I had on this earth was incredibly precious. I felt I owed it to myself to make the most of this incredible gift of life. Every morning I made a commitment to myself to do one fun thing, one thing that would bring me joy that day--even if it was something as simple as calling a good friend or asking for a massage.

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