Surviving on the Job
Surviving cancer involves both physical and emotional work and no one going through it needs additional discrimination at work. Yet because of a continuing mentality that equates cancer with death, many cancer patients face ostracism and hostility, at worst, and discomfort and ignorance, at best in the workplace. Cancer has been called the tuberculosis of the twentieth century, a scourge that labels its holder as unclean, we can’t give bold, we can’t serve in the military, and some would say we are not employable.
In 1992 there were an estimated 7 million cancer survivors—a figure that is expected to exceed 10 million by the year 2000. Many of these people are young and refuse to have the rest of their lives stamped with the word cancer and its associated stigma. They are standing up to insurance companies and employers and demanding to be treated like the rest of the world. In some cases that has meant lawsuits.
In 1990 the Americans with Disabilities Act was passed. And while its very title reinforces the continuation of the stigma, it does ensure that cancer survivors will have specific federal protection against on-the-job discrimination. Under the act, employers cannot screen your medical history and may ask medical-history questions only after you have been offered the job and if they pertain specifically to the performance of that job. The act, which is enforced by the Equal Employment Opportunities Commission, covers private employers with twenty-five or more employees through 1994 and then employers with fifteen or more employees. If you have a problem, call the EEOC at 1-800-872-3362. They will mediate a complaint on your behalf, and if it is found that you have the basis for a discrimination suit, the EEEOC will file suit on your behalf.
Women were divided on how much they wanted coworkers to know about their condition. Even in a good work setting, the response of coworkers to a cancer diagnosis can be very painful.
Rula, a nurse, saw the women and men she worked with as her family since her own was in a foreign country. She says her coworkers took the diagnosis hard. “Staring with when I was first diagnosed, I remember no one was visible. Everybody went into a room and started crying. Then the second day when I came back, everybody was so quiet, and I said, ‘Look, guys, we need to talk. Is it better for you if I talk? Or is it easier if I don’t?’ And they said no, please talk about it, because we don’t know what to tell you.”
Leanne and Angela had a very different experience when they returned to work after surgery. Angela: “People at work, with the exception of a very few, acted like I was dead. People are scared. I didn’t realize it then and it was very painful. They don’t know what to say, and they are scared to say the wrong things, so they don’t say anything at all. They should say, ‘Hey, I know you are going through something and I don’t really know how to relate but do you want some company?’”
Leanne went back to work at her day-care job three weeks after her mastectomy. “I didn’t want to think. I just wanted to go to work and do my job and have my mind occupied. My first day back was really hard. They didn’t know what to say to me. I expected some support and compassion, and they treated me like nothing happened. It was, ‘Hi, nice to see you, I’m glad you’re back.’ It was a really weird experience.”
“I remember one of the guys at work saying, ‘So I hear you have breast cancer.’ I said, ‘Yes I do,’ and he said, ‘I am very sorry,’ and gave me a hug. It was great.”—Jo Anne
Concerns about taking time off from work can add to the stress of a bad job situation for someone going through cancer. Cindy found her coworkers and employer concerned and caring until she began radiation and she missed a number of days’ work. “When I started doing radiation, they were like, ‘This should be over.’ It has changed my attitude a lot about the work force and people who are having a bad time. They need to be much more educated about what we are going through.”
Cindy remained locked in her job until her reconstruction was finished in mid-1992, knowing that she could not change jobs and expect to find insurance that would cover her reconstruction surgery. When she scheduled her expander reconstruction, she learned that her company would not allow her to work part-time, requiring that she leave for three months. While the company guaranteed her job would be waiting, she returned to find she had been replaced and is now working on projects throughout the company—at the same pay, but under much more stressful conditions. An infection in one of her incisions that required she take off additional time after returning to work was met with irritation by her new superior, who didn’t know her history and with whom she had no relationship. “It’s hard, when you have been through so much, not to lose your temper when they say something like, ‘It’s hard on everyone when you are out.’ Does this man think I want to be sick again? I could only say, ‘Well, it’s hard on you, but it’s harder on me.’”
Gale was simply fired from her job as manager of an event management company—on the last day of thirteen months of chemotherapy. “I’d been to work every day for thirteen months. At the end of that thirteen months, with my final chemo, my boss and his family had just gone skiing, and when he came back he said it was time for me to go. He offered me two days’ severance pay after thirteen years.” Gale says she turned her anger to profit by opening her own company, which is doing very well.
What we must do as cancer survivors is make our voices heard. The Americans with Disabilities Act was passed in part because of lobbying by the National Coalition for Cancer Survivorship, a very active organization that works for survivors in a number of areas. Think about joining. Ten million voices can be 10 million votes. In its winter 1992 newsletter, the NCCS listed which concerns it sees as critical in exploring new health care options: exclusion of coverage for preexisting conditions; denial of benefits for experimental drugs or treatments; job and marriage lock; employment discrimination; difficulty securing payment of clinical trials; experience- or family0history-based ratings of insurance premiums; caps on out-of-pocket expenses; patient’s right to choose health care providers.
Breast Cancer and Insurance
Breast Cancer and Insurance
“I think one of the first things I ever said to my new boss was when I marched in his office and said I needed his help because my health benefits would not help pay for a prosthesis. The insurance company said that a breast was not a functional part of the body.”—Elaine
“Why should a woman get a mammogram when she can’t afford to do anything if it comes back suspicious?”—Diana
I am convinced that the next riots in the streets in the country be about health insurance. Indeed, the work is seldom printed without such adjectives as chaotic, disgraceful, shameful.
No one questions the United States’ supremacy in the medical field. But what good does it do to have technology such a bone marrow transplants and chemotherapy if you cannot afford them?
It is a crime that many cancer patients must fight for their lives while also fighting against financial ruin or inhumane insurance companies. Indeed, women who are uninsured and do not have the cash demanded by hospitals before admission for surgery must take the time to beg or borrow money while they know their tumor is still growing.
While the majority of women I interviewed had major-medical insurance. Many expressed some frustration at dealing with their insurance companies. Some women lost their credit standing when the insurance companies paid slowly—sometimes drawing it out to six months or a gear.
“I had excellent credit before this. Insurance didn’t pay as quickly as they should, and they would say a bill had been paid when it hadn’t been. It took me several years to get it straightened out and in the process it ruined my credit. The insurance company was supposed to pay 100 percent after a certain amount and they refused, and the hospital wanted me to pay, and I wouldn’t because I knew I would never get my money back.”—Sheri
Some women were uninsured or under-insured and had the stress of extra bills added to their situation. Some found their insurance can celled. Lola’s insurance company just issued her a new policy after her mastectomy—with a cancer waiver. Marjorie B called her insurance company when she was diagnosed and was told that because she mentioned that she thought she had felt the lump two years prior to diagnosis, it was a preexisting condition!
As of January 1, 1992, stories were already emerging of doctors who refused to take Medicare patients because of new payment structuring. Indeed, Medicare refused to pay my mother’s $100 consultation fee for the initial meeting with the oncologist who carefully discussed chemotherapy. Medicare would not discuss reexamination of the issue, saying that “patient education” should be free.
Tip from e breast cancer symptoms .com—Insurance companies can do whatever they want. It is the consumers who must then prove they should be reimbursed.
The situation for poor women is appalling. This disease will kill a disproportionate share of poor women who do not have the money for regular care, much less preventive care such as mammograms.
Most private hospitals have a clinic setting, where indigent women can be seen by residents or doctors, within a private pay hospital setting. Many of those will no longer take breast cancer patients because once the patient is accepted, the clinic must continue caring for her. For a breast cancer patient, the cost can run to thousands of dollars.
Tip from e breast cancer symptoms .com—If your state is one that does not demand that mammograms be covered by insurance, you now have a cause. Establish treatment funds through your surgeon for those women who come after you.
The middle class is not far behind in the health care dilemma, with rising premiums and medical costs. As an entrenched member of the middle class, I found myself only a few months from the kind of ruin many women experience. While I was pregnant with my daughter, the year before I was diagnosed with breast cancer, my husband left his job with a major university to become a consultant. We had a conversion policy, which I thought was the same as a regular policy. Little did I know.
I had never filed a claim for insurance before my daughter was born. Unfortunately, she was early and spent seventeen days in the hospital before coming home. When we finally read our policy, we found we owed some $10,000.
The will have to find the right time to tell my daughter that we paid for her with MasterCard.
Because of this fiasco, I learned how to read an insurance policy. Since I was free-lancing and my husband was a consultant, I found an individual group policy that had out-of-pocket expenses of $1,000 and then 100 percent coverage. It cost us just over $200 a month in 1986, but was a good major health policy.
Two months later I found out I had cancer. If I had not taken out the policy when I did, we would have been wiped out financially and emotionally, trying to cope with cancer and bills. I know now from the stories I have heard that I was lucky.
But a year later, when it came time to renew our policy, we were informed that after the company had covered all but $1,000 of my cancer bills, our premiums would be doubled to $420 a month, because of “escrow balance for our group.” We had no choice but to pay what amounted to robbery since I was uninsurable except through a large group.
Luckily, I was offered a full-time teaching position only a month after our new rates were announced. The university’s standard insurance carrier wouldn’t touch me, but the Preferred Physician Organization (which included all my doctors) would cover us with my preexisting condition. So with not one day to spare, we were covered, although reconstruction presented a minor hurdle.
I panned my reconstruction for the summer of 1988, two years after my surgery, and began interviewing plastic surgeons in the fall of 1987, It took a dew “strong” calls to the insurance company—and one of my better letters—to get it to stop calling my reconstruction “cosmetic” and fulfill its obligation to pay for the reconstruction, which was the one consideration I made when choosing my new insurance carrier after returning to teaching full-time. I had called explaining my situation, and the customer representative checked and said that it would be covered. Since then the company had adopted a case-my-case basis for all plastic surgery, lumping reconstruction in with nose jobs and tummy tucks. I offered to show the company in person the difference between cosmetic—which implies elective to improve on something existing—and reconstructive. The company declined, but did agree to cover the reconstruction of my breast, with the clear understanding that it doesn’t pay for any modifications to the other breast. That, the company said, is cosmetic.
Tip from e breast cancer symptoms .com—If you are considering a bilateral, take insurance into consideration. Some policies will cover reconstruction both breasts of you are high-risk or can convince the company of the need to remove both, but they won’t cover alterations to the remaining breast.
I am glad I like my job, since I am basically uninsurable. Others have become locked into jobs and marriages because of health benefits.
Elizabeth T’s husband, Hugh, realized that a career change after Elizabeth’s surgery was complicated by insurance needs. “I’m limited because I’ve got to get into a situation that has a group health insurance policy.”
Pat F decided to retire from her job as a school nurse when it became too taxing in the midst of chemotherapy. Her insurance company has been paying 100 percent before she retired.
“The teachers’ retirement that picks up medical insurance make no bones about it. They said if we wanted to be covered for the preexisting conditions, we had to go with them. So we had to start all over and pay the deductible and get back to 80 percent just to be sure that she would be covered in the future.”—Pat’s husband, John
Marjorie’s surgeon wanted the swelling to go down before making some adjustments on her reconstruction. Because it was a new calendar year before she was ready for the surgery, she had to pay a deductible out-of-pocket expense of $1,100 for the second time in three months.
Tip from e breast cancer symptoms .com—The only way to change the insurance mess is to put pressure on your state officials to control such abuse. Write letters and call. Document your situation and let people know. Demand that elected officials take action.
Often, insurance companies will just say no and leave the ball in your court to pursue legal action. Or those who can afford it, this often results in a settlement, since insurance companies don’t want precedent set in court. If you can’t afford an up-front fee, find an attorney who will work for a percentage, or check law schools or legal-aid societies. Diana chose to have bilateral total mastectomies for her lobular carcinoma in situ. Her insurance carrier agreed to pay for the procedure on the left breast but did not want to pay for prophylactic mastectomy or reconstruction on the right side, despite her having provided documentation that this was acceptable and recommended. Even after surgery, when the pathology report showed a precancerous condition in the right breast, the carrier refused to pay. In addition, it greatly reduced the allowed coverage on the rest of the surgeon’s fee, saying the charge exceeded “usual and customary” costs, although the company would not say what those were. The carrier said that Diana’s policy did not cover reconstruction except following cancer surgery, which it did not consider hers to be. Diana at that point carefully read her policy and looked up medical terms in a medical dictionary. “The contract used the term neoplasti, which by definition can be any new, abnormal growth—benign or malignant. After I brought this definition to their attention, they agreed to cover reconstruction for the right breast.”
Diana and her husband began legal proceedings against the insurance carrier for the surgeon’s fees. The settled when it became clear they intended to go to court. In Texas, cases of fraud are eligible to be paid in treble damages, meaning three times the amount of the original claim. If you do have an insurance problem, Diana suggests engaging an attorney. “But be prepared to have to educate your lawyers about your diagnosis. Don’t assume that they know everything. I did some research on my own and was able to provide our lawyer with some critical information.”
There were also occasional stories such as Wendy’s. Diagnosed at twenty-six, Wendy soon learned that she would need a bone marrow transplant. At that time, Wendy was only the eighth woman to receive a bone marrow transplant in the state of Texas, and the procedure was still considered experimental. “The law firm where I was a paralegal was self-insured and I was worried when I found out that the partners had to put up some incredible amount of money—like more than $15,000—for me to get the transplant. They all pitched in and had it the next day.”
Tip from e breast cancer symptoms .com—Be careful on breast assessment for your family members. Some insurance companies are asking about history of breast cancer and then refusing to cover any breast-related issues.
Even those who have insurance must be aware of every bill and every charge, to be sure that the insurance company and the hospital agree.
Tip from e breast cancer symptoms .com—Keep a calendar that shows where you were on what day and hat was hone. This will help track insurance receipts that just give the date and the cost. Keep every bill from the hospital and know what each charge is for. Keep all correspondence from the insurance company.
Healing and Excercise
Before you leave the hospital either Reach to Recovery or your surgeon will be by to talk about exercises to restore your arm to full usage. The standard is to crawl up the wall with your fingers, increasing the height every day.
The day after my mastectomy, I felt strange. My chest and underarm were numb and there was a kind of tight feeling. But I could lift my arm almost over my head. I decided this was a breeze.
Two weeks later. When my incision began to heal and pull, I understood the importance of keeping the arm stretched. The scar tissue is much harder to stretch if you have not been exercising. As soon as your surgeon releases you, begin using your arm. I found that standing back in the kitchen to put dishes away gave an extra stretch and because I had a toddler, I didn’t have time to stand around walking up the wall. Instead, I did my exercises in the shower, reaching my arm as high as possible and making a soap mark on the tiles. Each day I went higher until I could walk the arm up the wall by my ear.
Remember, you are not an invalid. I began swimming six weeks after surgery and many women resumed tennis and energetic exercise within weeks.
Tip from e breast cancer symptoms .com—Don’t begin stretching until you talk to your surgeon. Particularly if you have had immediate reconstruction. You may do harm to the implant position or inside stitches.
A great program offered at many YWCA locations across the country is ENCORE, which combines water and floor exercises with peer counseling for postmastectomy patients. Created by a nurse and breast cancer survivor, the exercises can help restore full range of motion in the arm. Call your local YWCA to see if the program is offered in your area.
“That arm is still bothering me after all this time, after two tears. Whenever I stretch it in the morning, it’s still tight under the arm and I’ve lost feeling.”—Lisa
“When I first started, I could just barely get my arm up. And I remember doing those exercises against a doorway. In just two weeks time, I could see the improvement.”—Marsha
I remember the strange nonfeeling of my chest and underarm after my surgery. And the good news is that for most women some of the feeling will return after time. My lack of sensation extended almost to feel to within two inches of my armpit, and in the armpit there is deep feeling. On my breast, I can also feel sensation. When I had the nipple tattooed after reconstruction, I remember wondering why the nurse was deadening it more with a local painkiller. She explained that I had more feeling than I knew, and she was right. When the painkiller wore off, there was a dull kind of pain, like a bruise healing.
I have also experienced in the past year a very deep itching in my armpit. This scared me at first since I had itching as a sigh of cancer, but when I asked my surgeon. She said that it was nerve endings and if I would massage my armpit, it would help. Shortly thereafter, I resumed swimming three times a week. Not only has the itching gone, but it seems my sensation is increased. I visualized for a time all the little nerve endings calling out for each other in the dark and then rushing toward each other to reconnect as someone sang “Some Enchanted Evening.”
Other women in this book say their sensation has also returned, though none say completely.
The sue of the arm after mastectomy should be the same as before unless you have problems with lymphedema, swelling caused by a buildup of fluid in the arm as a result of the lack of lymph nodes, Few of the women who were engaged in active physical activity before the breast cancer indicated they had to stop. Although some, such as Ann. Could sense a little weakness.
“There are some things I can’t do at the gym, such as hanging from a bar, that I could do before. But I’m able to do everything that I want to otherwise.”—Ann
Tip—The mastectomy should not limit any kind of activity as long as you wait until you get clearance from the doctor a few weeks after surgery.
Incision
“Dr. H had a really good way of showing m husband the scar. He was changing the bandages, and David was in the chair. He said, ‘I need some help,’ and he was there. I didn’t have to prepare myself for showing him and he didn’t have to be prepared to see.”—Joanne
“The nurse would stand by my husband, and he and the doctor would dress it. Spiritually, he knew that was what I needed. I needed to know that he could look at my body and not recoil.”—Joyce
Looking at the incision for the first time is a very personal decision and one that is totally up to you. If you want to be alone, be alone. If you want your loved one there, ask him or her. This is one area where there is no good or bad advice—go on your guts. What do you want to do.
I remember looking down at my flat chest a few hours after surgery. My orientation to the world was now different. I felt a combination of curiosity, revulsion, and calm. It was there and now it’s gone. I don’t actually remember “looking” all at once, I remember easing into it as I examined the drains and my peripheral vision took in the dimensions of the scar. I definitely think the incision brings home the reality of that has happened to your body, and a strong case of denial will surely crack at the reality of a flat chest.
Mary C couldn’t look at her chest for three months. She had a visiting nurse who would come in and empty her drains and change her bandages daily. At the end of the first month, the nurse suggested that it was time. Mary tried to look, but became faint. They put it off again until the nurse’s last visit. It look another two months for her to get her courage up. Mary finally looked at her chest when she went to be fitted for a prosthesis, where the owner of the shop provided the additional emotional support she needed.
Joyce found a new dimension to her husband as he changed her dressings every day. “That was very, very special. He was so meticulous and careful. It was a labor of love. I saw it in his eyes. I watched his eyes. All the time. I don’t think I’ve ever looked into his eves more, before or since.”
“The day after surgery I kept getting ticked off at my nurse. She would come in and say, ‘Well. Have you looked at it yet?’ and I’d say no. She kept telling me that I needed to look at it. She kept pushing, and it made me mad. Finally, I just ignored her. I didn’t want to look at it by myself or with a stranger, like a nurse. I wanted to look at it with John first, so I said, ‘I’d really like for you to do this with me.’ And he said, ‘Sure, whenever you are ready.’ So on the third day we looked, and it wasn’t that bad. I had built up this fright that it was horrible, that there would be a big hole there—and it wasn’t that way. There was an incision and the skin was still there. I forced myself to look ahead and think, ‘Well, shoot, once they put stuff in there it’ll just pop back out again. So it wasn’t as bad as I thought.”—Andrea
“My reaction was that it wasn’t as bad as I thought. I had pictured grotesque disfigurement, and it wasn’t that. It was just a scar.”—Andrea’s fiancé, John
“When they were taking off the bandages. Mark walks in the room. I couldn’t have asked for it better because there was no time to discuss whether he wanted to be here or how we wanted to handle it. There it was. He could have turned and walked out, but he didn’t, and I’ll always be grateful for that. He didn’t come real close, but he came close enough to look.”—Jo Anne
“The day I came home from the hospital was terrible. That was the worst day because I liked at it. Of course, I was in a heck of a lot better situation than a lot of women who don’t have immediate reconstruction. But it was there in full, living color what had happened to me. That was just overwhelming, overwhelming.”—Ann
After Surgery
“I remember recovery and being there a long time and starting to feel real happy. As we were going down the hall toward the room, I could hear the music from The Big Chill blasting down the hallway. I guess they called to say I was coming. Mark put the tape in and turned it way up. I felt like dancing. I was so glad and relieved to wake up from surgery. I remember transferring from the gurney to the bed. My friend Lynne who was there told me about how hard it was for Mark to see me with the drains. He had to go out into the hall and put his head between his knees. I was euphoric when the resident came in to see me. I had been rude to him earlier and he deserved it. The same resident came in and I asked him to go dancing with me.”—Jo Anne
Tip from e breast cancer symptoms .com for friends and family—Recognize the adrenaline rush for what it is. We are at war and have just won a major battle, nut the fight is far from over. Don’t be surprised if in a few weeks the positive attitude has been replaced by anger and despair.
I, along with most of the women I talked to, didn’t fine the mastectomy painful. Since the nerves have been severed, there is no feeling in the breast.
“I was struck by how nonintrusive the surgery had been. It reiterated in my mind how superfluous these breasts really are. I remember feeling after the surgery how lucky I was that it wasn’t an arm or let or something I needed to be who I was. The loss didn’t have any effect on me. I could do what I had always done.”—Victoria
If you are considering immediate reconstruction, the entire surgery process and recovery will depend on which procedure you choose and how long you are under. Marjorie B was in surgery for eleven hours while a section of her hop as removed and reattached to her breast in microsurgery. “Coming out of eleven hours of anesthesia felt like it went on for years. Thy first hours were the worst. I would drag my eyes open and it would be three and I would close my eyes and two hours would go by and when I opened them it was only five past three. I was ready to kill myself.”
Some women experienced nerve hot spots, created when one of the nerves sends a signal and it hits a raw end. One woman compared the sharp, quick pain to a cold-sensitive tooth. These last a few days but are sporadic. I didn’t have them at all.
Without a doubt, the major complaint from the women in this book about the physical part of the surgery was the drains. The nurses empty them while you are in the hospital and then you will take them home with you and learn to drain them yourself. They don’t hurt. They are just inconvenient and a constant fuss.
“I had my own blood and was in the hospital nine days and came home with all kinds of tubes and hated it, hated it, hated it. That was horrible. That was probably the most debilitating, dehumanizing, degrading thing that I can remember.”—Joyce
Tip from e breast cancer symptoms .com—If you have immediate reconstruction you may have more extensive pain and a longer hospital star, depending on the procedure.
Many of the women in the book had friends or family stay with them in the hospital. Chuck spent long hours at the hospital with Marjorie and found that a gift that was most welcomed was food. “I was glad because you can’t do much, but at least she didn’t have to eat that hospital slop. Mostly it gave me something to do—going out to restaurants and bringing food back.”
Those of you whose parents are in the city may also want to follow the same guidelines as dealing with children. Of course, most adults know about hospitals, but they will also want information and as much participation as your family dynamics allow. Diane called on her sister to come and care for her during surgery. “My parents felt excluded. Like I was taking care of them, and they wanted to take care of me. They, from the financial standpoint, had to help, but I probably should have brought them in.”
“Oh, it was horrible. My mother and I just really went through a major crisis in our relationship because she is very dominant, and before that time had been very invasive in my life, as far as what I should do and how I should be. When I was diagnosed, it was like she had it. She was really worse than I was. And we really went through a lot of struggles about it.”—Amy
Cindy’s mother flew in from out of town and spent the night with her daughter at the hospital. When the doctor came in, he initially asked her mother to leave the room while he changed the bandages. Cindy asked that she stay since she would be helping with the bandages at home.
Make clear to your surgeon and the nurses what you want and who you want in the room. Some doctors ask husbands to leave, assuming that the woman wants privacy. If you want your husband or family member there during doctor visits, say so. Hospital rules about parties and visiting hours have softened considerably in the past decade, but you should use good judgment.
“I had surgery on New Year’s Eve day and that night at 3 A.M. I had tubes hanging out everywhere and I hear this party coming down the hall of the hospital. My friends showed up at 3 A.M. with hats and balloons and snuck in the room and we had a party.”—Mary H
Tip from e breast cancer symptoms .com—Hospital rules are softer now, but use good sense about getting some rest. The nurses can run interference for you and put a DO NOT DISTURB sign on your door.
Since the surgery is not that painful, most of the women enjoyed their visitors, and once the surgery and pathology report were out of the way, they tried to make the most of their hospital stay.
“The hospitalization was one of the high points of my life. All my friends were there, I had more flowers than would fit in the room and lots of cards. In fact, I was exhausted because someone would come by to visit me and then another person would come in and the first person would leave and that person would stay until the next person came. So I had visitors all day long. That ended when I came home. I went in the second week to get the staples out and the nurse asked how I was and I said I was really down. She said that was not unusual, because hospital stays can be good because so many people are around you. Then you go home, and especially me because I live alone. You can’t work, so you just sit. I had a lot of things to do, but that doesn’t take the place of having someone around to talk to. That was the first time I started thinking about the future.”—Dana
Tip from e breast cancer symptoms .com for friends—Don’t forget to call after she goes home. The adrenaline rush from the hospitalization is over and the pain from the surgery gets worse as the incision begins to heal and pull. In addition, the reality of what has happened has begun to sink in. Call, go by, or perhaps save your flowers for the week after she gets home.
The hospital is not the place to begin a campaign for the latest fad cure or books on self-healing—unless she asks for them. Wait until she is home, but still ask first. Unless you have had cancer, you cannot imagine how irritating it is to have a healthy friend bring you the latest cure from a popular magazine. On that it were that simple.
I found that friends who visited were uncomfortable hugging or even looking at me. And many cannot help that first glance at your now flat chest. Some of the women were open about this with friends, showing their incision or making jokes about people’s tendency to stare.
Surgery
“Her surgery was delayed about two hours, and it was getting really late in the afternoon. We knew Dr. W had several surgeries, and I thought he would be exhausted. I was concerned. But he talked to me before the surgery and he was so high. He was like a football coach, ‘Are you ready, let’s take care of this problem.’ ”—Sherry’s husband, Kerry
“The surgery wasn’t bad at all. After four months, you can imagine, I was ready mentally. I had prepared myself physically. I felt good. So I was really ready for that. And I recovered from it really quickly. In the spectrum of things, it was not that bad,”—Diane
“The hard thing was checking in that morning of the surgery—I had to be there at five o’clock, and it was right before Christmas, and we drove through the dark, dark streets and it was freezing cold, but everybody had Christmas light out. And I felt like, I don’t want to be here.”—Lise
I don’t know when I have been more frightened in my life than the day my husband and I got up at 4 A.M. to leave for the hospital on the day of my surgery. I don’t remember kissing Kirtley goodbye. It must be one of those memories that is too painful.
Somehow, driving through cold, dark, empty streets was appropriate for my state of mind. I was numb with fright that morning. I was walking and talking but light-headed with fear. My surgery was scheduled for 7 A.M., and after talking to women who waited for hours before going to the operating room (OR), I think early morning is better. I tried my best not to really wake up, thinking I would just nap until it was time. Fat chance.
When we arrived at the day-surgery check-in) in the remote possibility that this was benign in which case I would go home), I was put in a room and immediately visited by the nurses, who checked vital signs and drew blood for a last-minute workup before surgery.
The anesthesiologist came and we discussed being put under. If you have any history with surgery and know you are sensitive to anesthesia, tell him or her. I wouldn’t find out until later that I am one of those people who always throws up after surgery from the anesthesia. You’ll be asked to sign a staggering amount of paperwork that says, basically, you might die, and if you do, it is not the hospital’s fault. Period.
At that early hour, Tom and I were visited by both our pastors and every resident who was awake. It must have gotten out quickly in the floor that I wasn’t very modest and was willing to offer up my lump for palpation.
The surgeon also usually stops by. This is good time to ask some last-minute questions, while your husband, boyfriend friend or family are there. For example:
- What will my chest look like when you are finished? Are you using staples or closing with an inside stitch?
- How many days will I be here?
- When will I have the results from the pathology report? How many pathologists will see it?
- Who will be tell me the results of the pathology report?
- What will be done with the tumor when you remove it?
- Will anyone be assisting you with surgery? What will they do?
- How long will I be in surgery?
- What time will I be in my room?
- When will I see you again?
- Where will my husband/friend/family be? When will they know something?
Remember, husbands, significant others, and family who are waiting outside the operating room generally will get the news of your condition before you wake up. If you feel strongly that someone not be told before you wake up, be sure to tell your doctor. Sonja was angry that the doctor told her mother, who had a heart condition of her cancer before she awoke. It will also be our husbands or significant others who will contact family who are not present. You may want to discuss this before surgery.
Tip from e breast cancer symptoms .com— Ask your surgeon of there will be “call-outs” from the operating room, when the nurse or doctor lets the family know how you are doing.
Many women used music, both in surgery and in their rooms to relax them and facilitate healing. Nancy W discussed at length with her surgeon his talking to her during surgery, an idea he gradually accepted. “I told my surgeon that I wanted him to tell me the process of healing because I wanted to make a tape to listen to. He wouldn’t and I think part of it is that doctors don’t really know. Bodies heal, but they don’t know how. So I said, ‘While I am under the anesthesia. I want you to tell me how I’m going to get better. Maybe not what is happening in my arm and breast, But the stages I’m going to go through and that everything is going to be okay. I don’t want the possible good outcomes and possible bad outcomes. I don’t want the alternatives. I want you to talk to that real down deep level of me and tell me what’s right and what’s good and what’s going to happen. Even if it is a lie.’ He took a deep breath and said, ‘All right. I’ll do it.’ He saw me before I went in and said that he told everybody on the surgical team and that everyone felt like fools and went ahead and did it for me anyway. When I came out the first thing he said was, ‘I talked to you.’ “
Many young women today are making demands unheard of only a few years ago. They want music in the operating room that will calm them. They want the surgeon to say supportive things about healing and wellness while they are under. Many of these suggestions come from Dr. Bernie Siegel’s books Love, Medicine & Miracles and Peace, Love & Healing. Siegel explores the body’s responses to music and talk while the patients are under and has found interesting results. Dr. Jeanne Petrek, breast surgeon at Memorial-Sloan Kettering, says the anesthesiologists she works with have become accustomed to turning the tapes over for women during surgery. She says that her surgical team is accepting of anything that will help the patient feel better about her surgery, including accepting a blessing from one patient. “We were ready to put one woman to sleep when she sat up on the table and said, ‘I want all of you to kneel down so that I can give you the blessing.; Now, of course, we were all sterile and you aren’t supposed to go anywhere near the floor, so we all looked at each other. She repeated, ‘Can somebody kneel down, please.’ She was very sincere about it, and luckily the nurse anesthetist agreed to kneel down. I told the patient that she represented all of us, and the patient gave us her blessing and then we started.”
“The anesthesiologist allowed me to have tapes. I used a lullaby for the first and got a subliminal tape for the second. One side was preparing for surgery and the other side was recovering from surgery. I had earphones on a tape recorder and he flipped the tapes for me.”—Nancy W
After I waved goodbye to Tom and I was being wheeled into the operating room waiting area, a nurse put a warm blanket on me and squeezed my band. I don’t know her mane, and she will probably never know what that little human contact meant.
Then a familiar face was there as Dr. Knox came by. Her calm, “this is routine” attitude really helped. I was taken into the OR, where they put the anesthesia in the IV. The last thing I remember was telling everyone to do good work. I woke up in recovery, threw up, and then felt better. Later, I vaguely remember being taken to my room and moved to the bed. When you are trying to wake up from surgery, the nurses are always calling to you from the bottom of the anesthesia well. “We are in your room now and we want you to help us get you on the bed.”
I remember having disconcerting dreams. I awoke with the sense that all was not well. Like the typical person who does not like being out of control, I fought the drugs and woke up an hour earlier than anyone expected. Tom had left to tell his mother the news about the clearly malignant lymph node, and I awoke to the face of one of my best friends from church.
Cathy had a degree in counseling, which is probably why she was able to talk with me without telling me that my cancer was worse than they thought and was now in at least one of the lymph nodes.
She called Tom immediately and let me say hi. I know now how terse he sounded, but as far I was concerned, the world looked great. I was alive. I had woken up.
He was back at the hospital in a flash and told me the news. I remember comforting him and promising I would not die and make him rear our daughter alone. Since I am the worrier in the family, I had entertained the idea that the cancer might be worse than suspected. Tom. Being the optimist, thought it would be a lumpectomy, radiation, and back to normal. The diagnosis hit him hard. After reassuring him, I slipped into automatic pilot, that state of mind where you function and go through the motions, but nothing really sinks in.
Everyone gives denial a bad name, but I think it is the body’s screening mechanism. It’s as if the filter on the world closes down like on the end of a funnel. We only hear what we can handle. At some level I knew the cancer was worse than the original prognosis, but I didn’t seem to be reacting. I could only deal with minute logistics—the big picture was out of range.
Dr. Know came by shortly thereafter and confirmed what Tom said and told me they had scheduled the mastectomy for Wednesday morning, just a day away. I felt so lucky to have a surgeon who did not immediately do the mastectomy, knowing that I would wake unprepared for the loss of the breast. She explained that on Tuesday they would do the testing to see if the cancer had spread since there was node involvement.
Spread?
She explained then that lymph nodes are the body’s first front against cancer, and when they have been overtaken, there is a possibility that single cells (microscopic disease) have also made it past the lymph nodes and are traveling in the body. Therefore, instead of radiation, which kills cells that may have been left locally near where the tumor was in the breast, it was now necessary to talk about chemotherapy, a systemic treatment for cancer, in which the body’s whole bold supply is treated and those microscopic cells are searched out and destroyed. But first the radiologist had to check the spots in the body to which breast cancer cells most often spread (or metastasize) and form new tumors: the bones, lungs, and the liver, For that reason, I would have a battery of tests the next morning.
I think I said something like, “Oh, okay,” as I slipped into a fear-induced stupor.
Frequently, women whose tumors appear large or give other indicators that there may be lymph nodes involved will have the bone scan, lung X ray and sonogram before they ever go to surgery.
It amazes me now that I did not know the magnitude of what she was saying or the importance of the results of those tests. The nest day I was taken to nuclear medicine for a bone scan, where they injected me with a substance that would attach itself to any cancerous spots in my bones. I then lay on a table while a huge machine moved over me just inches away. It gave a picture of my skeleton.
Next came the liver scan, which was like the sonogram I had had while pregnant—only this time he was looking for dark spots on my liver that could be cancer. The chest X ray was like many I had had in the past.
All the tests were in and negative on Tuesday afternoon. Dr. Knox got the pathology report and gave me the basics on my tumor, which was invasive carcinoma, slightly estrogen-receptive and about 2.5 to 3 centimeters in size.
You can have a copy of the pathology report by asking for it. Not being the medical consumer then that I am now, I finally asked to read my pathology report in 1990, four years after my diagnosis. I wish I had seen it then, But this is one of those “when you can handle it” areas.
A couple of the women in this book asked that their slides be sent to an independent pathology lab of their choice. The hospital usually won’t give you your slides for fear they will be lost, but they will transport them for you to another lab. Trusting the pathology report, on which all your treatment hinges, is a little scary. Your choice of surgeon again reflects on both the anesthesiologist and the pathologist, both of whom the surgeon will choose.
When Tom called that afternoon, we chatted about bringing Kirtley to the hospital that night. “Oh by the way, all the tests are fine,” I said as an afterthought.
“What?” he said emotionally. “Why didn’t you call me and tell me?” I remember saying very calmly, “I knew it was okay. What is the matter with you?” Automatic pilot was in complete control.
That night my husband and I bid a fond farewell to my breast.
I have always liked my breasts, seeing them as one of my better features. Somewhere between a B and C cup, they were big enough and not too big. I enjoyed the braless era of the sixties and had a number of antique dresses that I would no longer be able to wear. All I call remember about that night was looking at the bandaged breast and realizing that I couldn’t go braless again (little did I know of the wonders of reconstruction then). The magnitude of the loss seemed minor compared to the imminent fear of death, but it would come later.
Oh Wednesday. I was wheeled again to the operating room where my right breast was removed. I woke that afternoon with two drains hanging from my now lopsided chest. The drains consist of one or two pieces of tubing placed inside the incision that empty into a bulb on the end. I felt fine, and once the grogginess from the surgery wore off, I felt great. It is the famous adrenaline rush that many women experience after surgery. It is that sense that we have beaten this beast. We have won. We have wakened from surgery and the cancer is gone. We are woman and we will survive.
Reach to recovery and hosital support
When Jo Anne returned home from the doctor’s office after receiving work that her tumor was malignant, her first call was to her husband and the second to Reach to Recovery, a national organization in which volunteers who have had breast cancer are matched with women who have just had surgery. They come to the hospital in the days after surgery to show women the exercises that will help in the healing process. They also bring a bra with a cup designed for a prosthesis and a small pillow for propping up the arm. Reach to Recovery is not designed to provide ongoing support. (Although in some parts of the country they are expanding services.) Volunteers will visit once in the hospital and then offer one follow-up call. From then on, you can place a call to the American Cancer Society and the call will be returned.
When you do see someone from Reach to Recovery, you may prefer someone in your own age group. It will depend on your city and the organization whether any will be available to you, so it may take some extra work to find one. Jo Anne’s son was six months old when she was diagnosed. “The first woman was just not a match. Then Lynne called me. She was very empowering because she said, ‘You are afraid you will never see your son go to kindergarten.’ That was exactly it. That was when we clicked, and I told her I wanted to keep her.”
Reach to Recovery responds to women who have been referred by their doctors—but not automatically. Indeed, volunteers cannot show you the exercises without a prescription from a doctor, although it does not have to be your surgeon. Tell your surgeon or the nurse that you would like a call now, before surgery, and you want someone your age. You can take control and make the call yourself. Tell them what kind of surgery you are having. They match women with similar situations. If you are going to have immediate reconstruction, tell them. This way they will send a woman who has had your experience.
Tip from e breast cancer symptoms .com—Call Reach to Recovery yourself and ask for a women who matches your needs. Then call your surgeon (or any other doctor) for the authorization. The volunteer needs this before she can show you the exercise.
Those women I talked with who were visited by Reach to Recovery volunteers in the hospital were divided on the effectiveness of the visit. Usually, it was the age issue that presented problems.
“The woman who came to see me was in her seventies and all dressed up, with lots of makeup. She introduced herself but didn’t touch me. She stood at the end of the bed and pulled out this stuffed it that was made of satin. She said, ‘You can sew this yourself.’ Well I don’t sew; I don’t do buttons or hems. The tit was stuffed with old hosiery, and she said I should pin it on the inside of my gown as I left the hospital so my husband would feel comfortable. I thought, You ass. She should have come in with the knowledge that I wasn’t married, at least finding out something about me before telling me that I should be concerned about what someone else thinks. I asked to see her incision since she was ten years out and she said that wasn’t appropriate.”—Mary H
A number of the women interviewed for this book have become Reach to Recovery volunteers. They say the organization is changing to provide more home visits and that many of the volunteers will talk about emotional issues with women. Indeed, you will find that like most volunteer operated organizations, Reach to Recovery and volunteers vary from one part of the country to another, depending on the programs and those in charge.
Teresa M was the coordinator of Reach to Recovery for greater New York City when we talked.
“When I became the coordinator, the woman who had left felt very strongly that breast reconstruction should not be discussed in the hospital and that a volunteer should not discuss whether she had had chemo or how she had handled it, or aspects like that. It was very tightly controlled. And when I came in, I felt that by walking into a room and saying to a patient, ‘I had chemo but I can’t discuss it’ was more frightening than saying, ‘Yes, I had chemo and I’m alive today. And it wasn’t pleasant but I made it through it and you will, too.’ No, we shouldn’t discuss the drugs or the individual treatments or things like that, but when I came in, I said, ‘I want to have a breast reconstruction program. I want women to come here and talk to those of us who have been reconstructed. I want them to know.’ ”—Teresa M
Tip from e breast cancer symptoms .com—A number of hospitals have created their own cancer survivor network. Ask them
The proliferation of support groups has also want many more sources for women who might visit you and talk with you about their experiences. Indeed, many hospitals have created additional cancer visitation groups. Ask your doctor or the floor nurse if the hospital has a group that might send someone to see you.
About Women & A Breast Canacer Symptoms and Diagnosis
ONCOLOGY AND GRIEF CRISIS COUNSELOR JAN PETTIGREW, PH.D. AND R.N., TALKS About Women & A Breast Cancer Symptoms and Diagnosis
Jan Pettigrew, PH.D. and R.N., is an oncology and grief counselor who has worked with cancer patients for thirteen years. Since 1989 she has facilitated a group for women with breast cancer as a service provided through Dr. Sally Knox’s practice. She is now in private practice in Little Rock, Arkansas.
What is happening emotionally at diagnosis?
The first word women hear is cancer, and they don’t hear beyond that. The total focus is on cancer, and the predominant emotion is fear. The major fears of a cancer patient are death, dying in pain, and dying alone. There is also fear of debilitation and disfigurement.
This is when women think, I am going to die. They feel guilty that they are being morbid and not up for the family. They berate themselves for being pessimistic. I think it is very healthy to be thinking about death. Then you can back up and get some perspective about where you really are. If you spend your energy trying to avoid it, you exhaust yourself.
What do women need to know about these feelings?
They need to do hearing that it is okay to be afraid and not to have to fight with the fear, but to go with the flow and let someone be there and comfort them. They need to begin breaking the fear into manageable parts and name the specific fears so that the fear is not so overwhelming.
How do you name a fear?
You name it by talking about where you are. What are you feeling right now? Can you put a name on it?
What are some of the other issues women express?
We are inundated with the message that we should be positive and that there are cancer types. There is the pressure when you are diagnosed to do cancer right. “I am onstage and I will pull myself up by my bootstraps and say all is fine and not fall apart.” All the mind/body emphasis is really on not denying feelings you are having but letting yourself go with the feeling and letting someone else into that feeling.
How do a wife and husband or two significant people talk about this right now?
Give each other permission to say what is in their hearts. There is a great tendency to try to say the right thing to try to cheer the other person yup or to too quickly say, “Everything is going to be okay.” It’s not just one person who gets cancer; the whole family gets cancer. So the husband is called upon to make just as big an adjustment as the wife, and they need to talk honestly about what they are facing and not protect each other from their fears. To be able to cry together and comfort each other.
What if that isn’t happening? The woman is in need and either the man is not there or you are alone?
Your need is still valid and you must activate other parts of your support system, other family members or friends who you can tell how bad it is.
What can friends do or say to help the person open up and then what do they say when she says, “I’m totally terrified”?
The questions are “what is happening to you right now?” “Where are you?” “What is going on?” You can ask, “How can I support you in a way that will be meaningful to you?” You liked flowers and you told your husband that. Some people want cares. It is not so much doing the right thing as being there, being fully present with your heart. Talking is the most valuable thing a while woman can do. It is not so much that your friends hear you, but that eventually you begin to hear yourself. It takes a while.
What does a shut-down person look like?
They are very rigid. They will say things like I am fine. I am okay, I don’t need counseling. I can handle this. And then you see a tenseness in their eyes. They are too together. That worries me more than someone who is in here screaming.
What about fear? What do we do with it?
Fear manifests itself in depression and anger. I keep saying to lean into your fear. Don’t run. Let yourself be who you are. If you are angry, be angry. If you are sad, be sad. Feelings are neutral, even though we tend to label them good and bad. So just allow the experience.
But when you don’t have anything to be angry at, how do you vent that?
You get socks and roll them up and throw them at the wall as hard as you can or buy cheap wineglasses and shatter them in a box in the backyard. Get a bat and hit a tree. Get a tennis racket and hit a pillow. Scream in the car. Find a physical response.
What happens after surgery?
After surgery is a time when I see women trying to get it together. They say, “Well, I made it through surgery and now I will get on with my life.” There is always a let-down right after surgery—from a few days to a month. It occurs when the adrenaline surge that accompanies surgery cuts out all at once. Then comes preparing for postsurgery treatment and that brings depression all over again. It is a time of uncertainty. They have heard about chemo and it’s awful and it’s awful and they are scared all over again. The woman puts a guilt tri on herself that she is not doing well. She thinks, “Oh gosh, I am not coping.” But the let-down doesn’t have anything to do with coping. The body is worn out and needs a rest and overwhelming emotions always follow the physical state of being worn out.
What is the best source of immediate support?
Someone who has been through it. Support groups or one-on-one with someone who has been there and who is far enough ahead of you to show that you can make it. But someone who will be honest. “I hated losing my hair and I hated throwing up, but that may not be your experience. But you can make it. I did.”
When does leaning into feelings become destructive to the person?
That has to do with time and how long it goes on. If there is no release and the woman is just going with the fear over and over and over again, without resolution and release, then that gets destructive. We are talking weeks and months. Being angry is okay, but weeks and months without change means you need help. I see a lot of suicidal tendencies after mastectomy. It is very important that a woman closes the door on suicide as an option for her escape from this scary experience if she is going to live. You have to choose. It is a deliberate choice to choose to live with cancer as opposed to die with cancer. You die by choice. You may live with this disease twenty plus years and yet all that time was wasted because you were mentally dying. You chose to die, not live.
How long does this all last?
I think you are talking years and I can’t give you a certain time. It depends on how deliberately the woman has worked through letting herself feel all the feelings. A lot of times women have to get back into taking care of everyone and all the responsibilities. She may also choose to do that as an escape from feelings. Then she undergoes what we call “crash and burn” later and that delays the whole process. Many times women are pressured to hurry up and get to the point where they see cancer as a gift or they see the positive side of cancer so they try to escape the process. I don’t think you can get to that point without the struggle
How do you know when it is over?
The healthiest people are the ones who can be open about all aspects of their experience. That is what you are striving for.
How long does the process take?
Cancer changes a person forever.
Preparing Your “Self” for Surgery
Remember during this time to be kind to your body. Take time for yourself and feel good about how you look. What are the little luxuries that you never do? Buy that scented soap or new perfume.
Dottee talked to her body. “Every day I began to make the affirmation, ‘I love you, my body.’ After the surgical procedures I knew my body needed all the emotional assurance it could get from its owner.”
Dottee also saw a chiropractor to realign her body after the stiffness from her hospital stay, and she had a monthly massage.
The most important message here is to listen to your body during this time. If it needs rest, let it rest. Pamper it and let it know you love it. “I would smile at myself in the mirror and then do a complete facial, telling myself with each moisturizing stroke how beautiful and healthy I looked.”
Make time to say goodbye to your breast. Take time to caress and love yourself with the understanding that a part of you is going to be removed. One woman and her husband took a bottle of Champagne to bed with them and toasted her breast as they said goodbye.
“I remember the night before. I took a bath and it was like I was giving myself that opportunity to look at my body and say, ‘You’re going to change,’ and kind of mourn that. Go through that mourning process.”—Diane
“My surgery was not until 2 P.M. I wanted it no Monday so I could have the weekend. My husband and I went out to dinner on Saturday night, and it was such a bomb. The service was horrible and the food was horrible. Maybe no restaurant could have done anything right that night. A friend came over on Sunday to take care of my son so we could go to a movie, and it was horrible. Nothing was as my fantasy played it out. I had to get up front with my husband later and say this is not working out the way I had planned. I had hoped for some romance here. I remember saying, ‘I am going to take a shower now and I would like you to join me.’ What an ultimatum. But it was important to me. The next morning before surgery, I showed and said goodbye to my boobs.”—Jo Anne
Chuck and Marjorie went to “space.” their name for a particular vacation spot in the Caribbean where they could relax and just be together before surgery. Chuck said this was not a time to cry and cope with surgery but rather a time to “suspend reality.” “It’s like we were in an alternate reality. We really weren’t thinking about it.”
Joyce took the time between biopsy and surgery to make her own tapes for the operating room and recovery room. “I sat on the floor of my bedroom with my cat curled at my feet and made tapes of my voice telling me things that would help me in surgery. It was self-affirming. My voice speaking to me about my will to live. My blessings and my strength and that I am loved and I am blessed and I am cared for. I had the tape on during surgery, which was fourteen hours. I even had one for recovery. ‘Hi. I think I’m m=waking up.’ I’ll never forget hearing that.”
Joyce also had friends and family positioned outside the operating room with instructions to send good thoughts her way. “I told them to say prayers. I felt they would know what to say. I can’t program their love. I just received it. It was a real energy flow. In the operating room I blessed all the doctors and thanked them for all their good work.”
Family Issues
“My husband’s friends had offered to help. I wanted to take advantage of that, but my husband is the kind of person who doesn’t believe in asking for help. If anybody asks you for help, you give help, you offer help. But you don’t ever ask for help, and you don’t accept help. And I said, Excuse me. We’ve got three little kids.’ ”—Nancy W
Put someone in charge of the home front while you are away if there are children involved. This person should be someone other than your husband or partner, who will want to be with you at the hospital. The logistics of driving to and from the hospital can get tiresome.
Tip from e breast cancer symptoms .com—There is something incredibly exhausting about hospitals. I wonder if it isn’t the tension in the atmosphere that saps our energy.
We are women of the nineties. We buy houses, have careers, are gourmet cooks. We are liberated and can do volunteer work, wash the dog, and monitor our children’s TV viewing simultaneously. We should be able to handle cancer alone too, right? Wrong.
My pregnancy with Kirtley the year before I was diagnosed with breast cancer ended with six weeks of bed rest. Both my husband and I learned for the first time in our married life that it was all right to accept help. It made our friends feel useful and good, and I was neither bad nor weak for accepting it.
When Tom’s mother called and offered to come help during my hospitalization, Tom said no. I told him to call her back and accept. I knew that taking care of two children, one of whom was barely walking, plus my needs, would be too much for him. She was there to cover the house to free Tom to be with me.
Remember that your husband or partner is to some degree also impaired. This diagnosis has affected him in ways that may be similar or dissimilar to yours.
“I went through a range of emotions—mad, scared, wondered why it happened—you name it. I went through emotions of fear for myself. Because I didn’t know what I’d do without her.”—Cindy’s fiancé, Larry
We see ourselves as “in charge” and capable of handling anything. For many of us it is a significant part of our identity. But there is a time to let go and rally the troops. The time is now. Think of it as part of your treatment. The need for emotional support is as pressing right now as are the medical decisions. For it is the emotional support that will help you cope with and make the very difficult medical decisions.
“It is very hard for me to ask people to do things for me. I tell everybody that I don’t need help. I had friends who wanted to come take the children for the day, friends who wanted to come clean my house, and friends who wanted to cook and car-pool. And I said, ‘No, no, I can do this all by myself.’ My husband still teases me about it and says he hopes I don’t ever have to go back in the hospital, because nobody is going to do anything for me. I wish now that I had let them help with the children. It wasn’t the house that was the problem. It was the two-year-old. Just to take him to lunch and let him play would have been great. I was exhausted. That was the other thing I wasn’t prepared for. I felt good, but I was tired and now I know that the anesthesia takes a lot out of you.”—Lynne
For women who are facing this alone—single, widowed, divorced—asking for help can be complicated if there is no one. Most of us have some form of community, through work, social life, or church. Explore all these options to see if someone emerges who would be willing to offer an ear and a shoulder. Finding a survivor either by word of mouth or through breast cancer support groups can be quite a gift. Often the women who have been there and who have become active in reaching out want to be available. Then you must be willing to ask.
Judy D was single and fifty when she was diagnosed. Her brother and her family lived fairly close, but Judy still found she had trouble asking for their help. She also found herself comforting her friends. She finally sought professions help. “I realized that I had been the caretaker all my life, and now I needed caretaking. They were all willing’ it was just very hard for me to ask. But I did, and they all responded beautifully.”
Tip from e breast cancer symptoms .com—Don’t be put off by the first refusal of help. Drop a line or wait a few days and return the call.
During the first week after diagnosis, friends and acquaintances will be calling to offer help.
TAKE THEM UP ON IT. You may not want to invite casual acquaintances to take you to the doctor, but there are probably one or two friends on whom you can depend.
Think practically right now. How can you relieve pressure? What are the things you have jotted down that you need done? Here are some areas where you might ask for help both before and after surgery.
Research: Hand a friend the list of resources at the end of the first chapter and ask him or her to get the information you want.
Ask friends to find other women your age who have had breast cancer whom you might be able to talk to.
Food: Families still have to eat. Does the church, your company, or your husband’s company want to send food? Let them. This might be something they can do if you are facing chemo, when food may not be your highest priority. When people ask what you need, tell them to send food. Many catalogs and specialty stores have prepackaged fruit and cheese baskets. These are great to keep the kids going while you are recuperating. This is also a time when you need to think about eating well. The temptation is to relieve pressure with fast food. Think again. Keep fruit and vegetables handy.
“We had so much food. People would ask how they could help and I would say, ‘Bring food.’ They wanted to help and I knew they had a need to and because we had a baby it was easy to ask. Some friends from work called to say they were coming to clean the house. I said, ‘You can’t do that, it’s too personal.’ They said, ‘Sure we can.’ I decided I liked that. When they came, I came out in my jammies and no robe. I had a need for them to see me flat.”—Jo Anne
Finding a doctor: Ask them to call around and get names of oncologists or plastic surgeons or radiologists.
Shopping for the family: If you can’t get it together for a list, ask them to get you the staples you know you will need in the next week: toilet paper, trash bags, milk, cereal, bread, fruit, frozen dinners.
Taxi: Ask them to pick up arriving family members at the airport or children at school.
Child care: Ask for a night of child care so you and your husband or a friend can go out. Have them come to your house. The children know something is going on and will be more comfortable at home.
“All the phone calls I got from people that I knew but didn’t really know. They would call up, ‘We want to keep your kids.’ And I was, ‘Oh no. We’ve got it all worked out.’ And now I think, Why didn’t I accept some help? I’ll take help now. That was one of the hardest things, too, have people do things for me, instead of me doing things for them.”—Madeline
Doctor visit: Ask someone be recording secretary at doctor’s visits—the extra eyes or ears.
Presence: Sometimes we need people to be with us. Get together for coffee or lunch.
Shopping for yourself: Do you need something for the hospital? House slippers or a new gown that has a loose top? Or ask a friend to pick up some surprises for your young children for their visit to the hospital room. Prepare snacks or something special for them to do while they visit, to help take the fear out of mom’s being sick.
Tip from e breast cancer symptoms .com— for friends and family—Waiting for biopsy information or to check into the hospital con be an incredibly stressful time. Take her for a walk or a slow stroll around the neighborhood or shopping mall. Ask her to talk about what is happening and then shut up and listen. Instead of saying, “What can I do?” say, “I am planning to bring dinner. What is a good night?”