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The following article is excerpted from Chapter 8 of Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Most people with metastatic breast cancer will face several hospital stays, to deal with the effects of treatment or with the symptoms of the disease itself. A hospital is a unique environment, nurturing and frightening by turns, a dangerous place and a place of refuge. It is often a setting where patients easily feel intimidated, as Scott Kitterman observes:

The problem is that when you are the one that is sick, there are a lot of psychological pressures to shut up and believe what they tell you. This is why we have a policy in my family of not leaving anyone alone in the hospital during the day when they are most likely to be mucking about with you. If the individual is really sick, then we go 24 hours. Adult or child, makes no difference. If you're really sick, you need someone there sticking up for you.
Pat Leach, as a nurse, describes the insights she has from both a patient and a health care professional's perspective.
I've been in the hospital three times in the last two years. I brought along loads of photos, CD's (I love 50's rock and roll, and I jitterbug and twist in my room), I walk the halls if possible, read lots of good books. My daughter has stayed with me all night and my husband is with me as much as possible. I talk a lot with staff, question everything but tell them why I am questioning. I try to get to know them by expressing an interest in their life and I've been lucky in that my hospitalizations have gone smoothly--I've had no real complaints--being a nurse I know how busy a unit can get. I also know they're all human and can make mistakes so I try to discreetly stay alert to what's being done, given to me, etc. I've tried to talk to my family and educate them to be on the alert, to question and to please advocate for me if I am unable to do so myself. It's scary, what could happen--what did happen at Dana Farber (a medication error where two patients were given four times their HDC dosages). Staying as well educated as possible about treatment can only help.
Kim Banks echoes her thoughts:
While in the hospital, I feel comfortable with acting as my own advocate and am more assertive in that environment than I am in everyday life. Although I'm assertive about asking for things when I need them and asking questions about what I'm being given, I do treat the staff with respect and thank them for their care. I also try to be understanding when they are busy. I know that many hospitals are cutting costs by cutting back on nursing staff and that they are all taking on more tasks. As in most situations, I've found using honey gets quicker results than vinegar.
Many women find ways to resist the depersonalization of hospital life. PJ Hagler, a veteran of many hospital stays, felt easier knowing her oncologist was willing to go to bat for her if need be:
When I went to the hospital in the beginning of all this the only thing I would bring was my personal toiletries and pj's. I have been in and out so many times over the last six years that I now take my pillow, quilt, my mascot (a stuffed giraffe), tapes, tape player, etc. I find that if it is going to be a long stay these things help a lot. I'm always in the middle of a book so that always goes. All this helped me to be able to tolerate my stay better. I get homesick and unless I'm in isolation I get visitors and that helps unless I'm very ill. When I was in isolation for low white cells and an infection, I had an awful time and the only one allowed to see me was Mike.

I was in a room once where the nurses were awful--they didn't give me pain meds when I was supposed to have them. My oncologist is the head of oncology and a board member and trustee at the hospital, so within one day I was on the other floor. He's always made arrangements for a private room on the second floor where the nurses are who he knows will take care of his patients the best. We live very close to the hospital and Mike works only two miles from the hospital so I insist he gets some sleep at home and I also want him to work to keep his mind busy, especially the last time when I was getting so many tests. Otherwise, he would have to just sit and wait for me to have x-rays and whatever for days at a time.

Jenilu Schoolman brought a small part of her work as a weaver into the hospital:
Even in a medical crisis, it is important to me that I retain my sense of identity. One thing I do to insure this is to put on regular clothes in the hospital and wear pajamas only at night. My little spinning wheel comes as well. Besides being a novel conversation piece, anxious hours move more quickly to the rhythm of the wheel.
During her lengthy transplant stay, Barb Pender found comfort in reminders of life outside:
My transplant stays were very special to me. I took many pictures of my children and grandchildren, precious reminders of why I was there. I took my computer, my CD player with my favorite go-to-bed music. I also took books I didn't read--no concentration--and I took some crafts to work on that are still unfinished in my closet! Before my second transplant I went to the river with my friends--they made a video of the wonderful weekend we had--I watched that over and over just to remind me of the life I had waiting on the outside of those walls. I didn't care for visitors during that time--I spent most of the time resting and recouping from the high-dose chemo and I didn't want to expend my energy entertaining guests--they didn't require entertaining but I felt as though I needed to be "up" and perky. UCSD hospital staff was the best.
Like many other women, Bonnie Gelbwasser was impressed at the quality of care she received during her lengthy stay for HDC:
My only long stay in the hospital was the 25 days I spent in the BMT unit. I never wore the nightshirts I brought because it was easier for the medical staff to access my catheters if I wore the johnny. I brought a computer but didn't have the concentration to do anything with it. I did bring books, puzzles, note cards and notes and photos from friends and family to put on the bulletin board in my room. I also brought a cassette player with me--that was the best thing because I could listen to music that calmed me.

I have always felt comfortable discussing my concerns with my doctors or nurses. There has been no need for an advocate. I have a strong voice and on the rare occasions when I feel I have not been well-served I have no problem articulating my views. My experience with hospital staff has been almost entirely positive. I think it's most important to be polite when you have a request or a complaint, and to be sure that what you are asking for is not unreasonable. I have found the medical professionals who worked with me to be dedicated to providing the best care they can to each patient. They try, within the limits of their knowledge, ability and time, to understand each patient's specific needs and personality and to adjust that care to take those needs and that personality into consideration.

Since Bonnie preferred not to have visitors, even family members, during the most difficult times, she devised an ingenious way that she could still feel their support:
I had cards made before my transplant. They were yellow postcards with a chicken coop on the front. The flip side said, "I'll be cooped up for a while having an autologous bone marrow transplant" and provided dates and my hospital address and encouraging people to call and write. They worked like a charm. People saw that my sense of humor was still intact and came through for me.
Like Bonnie, Jacque Fisher prepared for the loneliness she knew she would feel in a most creative way:
I took as much of home with me as possible. My favorite green and white-striped throw, pillow shams, stuffed animal to hug during the long nights, lots of tapes, a tape player, EASY crossword books (your brain goes on vacation), my own comfy pj's that buttoned up the front, sweats to roam the hall in. I had several knitted hats (like skull caps that my mom knit me). My bald head got VERY cold sometimes and the turbans, etc., were too lumpy. Since I wasn't able to take or have live flowers, I made an "angel" basket of pretend flowers. I made a template shaped like an angel about 3 to 4 inches and traced that shape onto all of the cards that I had received before entering the hospital. I then hot glued a pipe cleaner to the back of each and stuck them in a paper straw-covered oasis that had been arranged in a basket. Each evening and morning I would take an angel out and say a prayer and remember the sender of that particular card (I forgot to mention that I had written each sender's name on the back of her/his angel). Then I poked a hole in the opposite end from the glued pipe cleaner and made a chain of them to hang from the window in my room. This really helped me take my mind off myself…very important during this procedure.
JB Boggs, a former aerobics instructor and rock climber, managed to get around, with some difficulty, using a walker, and wore a morphine pump for her extensive bone metastases. In a writing workshop, JB reflected on a process that had become a part of her life in a prose-poem she entitled "My Hospital Bag":
The bag is there now packed with my comforts. The radio, the earphones. A book on tape. A paperback. My own lotion and toiletries. The bag is all ready to go if I am pulled into the hospital again. The contents have grown with experience. I have learned to take along my own special sleeping pillow. In the thirteen months just past I have been in the hospital nine different times, most stays at least a week, often longer. The bag is always ready.

Who knew it would become an easy routine to pack to go to the emergency room? How can it be a regular part of my life to rush to the hospital in response to some crisis or to thwart some developing problem? I see the bag on the floor of the closet, ready and waiting. Also, now it is full of paperwork. My duplicates of power of attorney. My will. My specific wishes about not allowing the "heroic" measures or anything to keep me here when it is time for me to go--to go where my traveling bag cannot. I'll leave it behind then.

I won't need the contents anymore. I will be light and free and traveling to a new place with no baggage, no tubes, no cane, no CADD pump, no pain. I do not fear the process or the journey.


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