When your Wife has Breast Cancer: You are The Primary Caregiver

Three Words Which Will Change Your Life

“Your test results from the biopsy came back positive; you have cancer. You need to call your surgeon.” These two sentences, given over a phone line by a cold, unknown, detached voice, a voice that sounded like it was ordering a pizza instead of reporting deadly news, sent my wife and myself on an emotional roller coast ride that is still running. Before I could formulate a coherent response, the line went dead. The Doctor had delivered the message quickly, “professionally,” and efficiently then disconnected the call. As if to tell us; welcome to the world of cancer treatments just follow our directions, don’t ask questions, and you might survive.

My wife broke down and cried. I’m holding her in my arms trying to reassure her that everything is going to be fine; however, in my minded, I’m remembering my mother’s fight with breast cancer 15 years earlier. Technically mom was considered a survivor. She made it to the five year mark so that was considered a success by the medical community. The cancer came back at the five and a half years mark; three month after that, she was gone. I didn’t know what to say or how to say it. All I could do was hold my wife tight and let her know I’d be there for her.

She said, “I don’t want to die.”

I told her, “You’re not going to die! You will beat this!” My wife then said something that the full meaning of which did not register with me.

“Don’t leave me!”

I assumed she meant not to let go of her. It wasn’t until after we came out of that dark abyss of cancer that I finally understood what she meant.

Thus began my journey as a primary caregiver, for the second time, but this time it was my wife who needed me.


Wear the Pink Ribbon

The Nightmare Scenario

There are classes on being a caregiver, how to handle the stress, how to remain upbeat and positive, what you should do for your love one who is sick; however, most people don’t take those classes until after the fact. If you’re working full time, which most people are, taking classes is out of the question. So you learn how to be a caregiver through OJT.

The term caregiver doesn’t even begin to describe what you do. As a caregiver you are a nurse, psychologist, philosopher, cook, cleaner, and drill sergeant. Along with the aforementioned jobs, you are also the financial heart of the family. If you don’t work no one eats, treatments stop, and you lose your home. So the stress level is particularly high.

What are you to do? How do you squeeze forty-eight hours into a twenty-four hour day? Physically and emotionally you can’t, and the man who believes otherwise is just fooling himself into thinking he can do everything. The only thing you have to remember is you are responsible for getting your spouse through this ordeal no one else can do it. You must remain positive, reassure your her that you will be there for her no matter what, and most importantly that you love her. These last two points are very important. The nightmare scenario a woman has during this time is that her husband is going to walk out the door.

Right now you're saying I would never do that, but unfortunately there are men out there who just can’t handle the pressure. They put on a show, but when it is time to stand and deliver, they are nowhere to be found. Just remember when you stood at that alter, in front of your family and friends; you made a promise to “love, honor, and cherish, in sickness and in health.” Have you ever wonder why sickness came before health? The answer is obvious, it is easy to love, honor, and cherish when your wife is healthy, but when your wife is sick, I mean chemo sick, and emotionally devastated then those nine words take on a whole new meaning. Your wife is counting on you to get her through this and you had better be there otherwise you will never be able to look at yourself in the mirror when you shave every morning.

Once the initial news wears off, you begin to fight back and believe me it is a fight. While your spouse is fighting for her life, you will be fighting for her. The surgeons, oncologist, X-ray techs, primary care doctor, and any other specialist, you may have to see, deal with cancer every day to them it is a job. They can’t become too emotionally involved otherwise they will crack up. So you try to understand when they are extremely cold, efficient, and aloof. I do not mean to say that these men and women are uncaring. On the contrary, –with the exception being the doctor who informed us of the biopsy results- the well being of the patient and the dedication to move heaven and earth to make sure everything is done to help the patient is the primary focus of these men and women.

Finding the Right Doctor

Your first hurtle to overcome is finding an oncologist. Your wife needs to pick a doctor who she will feel comfortable with; who will take the time to listen to her and answer her questions, along with your questions; who will explain what is going on in terms that both of you can understand. Most of your time will be spent with the doctor’s staff; the nurses and technicians who draw blood, check vitals, and administer the chemo. These people are the back bone of the practice; they are the ones who make the doctor look good make sure you are comfortable with these people as well. If for any reason your wife, or you feel, uncomfortable with the doctor or the staff find another one. Do not be intimidated or worry about hurt feeling, you are dealing with your wife's life.  Finding the right doctor will help tremendously with your wife’s mental recovery as well as her physical recovery.

The Internet has allowed people instant access to information that twenty years ago would have taken a layman months to find. This can be a double edge sword. Doctors are not happy when patients come in, after a self diagnose through the Internet, and ask for a prescription. Nor should they be. The doctor is the trained professional with almost a decade of training. You will have had maybe four hours of Internet research. You are not the expert the doctor is. I am not saying do not do research. By all means research the type of cancer you’re dealing with find out everything you can about that particular cancer. This way when you do see the doctor you will have a better understanding of what is going on and your question will be more specific which will allow for more definitive answers from the doctor.

My wife and I were lucky the oncologist she picked the first time was fantastic. He was compassionate and upbeat. His staff was first rate their main concern was for the comfort and well being of the patient. They worked around our schedule whenever possible. If my wife or I had a question it was answered immediately. The doctor explained the whole process from beginning to the end, which was five years down the road. The first step in this long process was testing.

Testing

With a diagnosis of cancer the main concern is to find out how far the cancer has spread. My wife was scheduled for lymph nods test, liver test, and a MRI. After each test there was the interminable waiting period to get the results from the doctor. As each test result came back negative, we hugged and cried. There was one test that we had the result instantaneously. The bone scan test. The bone scan test was also the most nerve racking. When I say the results were instantaneous, I mean it literally.

This test is designed to detect cancer in the bone, white spots mean cancer, if the test results come back positive then the odds are not good. The test involves injecting a dye into the body. This dye then gets into the bones. A computer monitor then reveals if there is any cancer in the bone.

The test begins with my wife supine on the table, the machine is making whirling sounds, the monitor is slowly revealing her skeleton, just like a curtain being lowered from the top down. My wife’s position made viewing the monitor impossible so it was up to me to give a running commentary as the dark screen slowly dissolved into the gray image of her bones. We held our breath, my wife prayed and I lost enamel from my molars. How am I going to tell her if there are white spots? Millimeter by millimeter the dark screen turned gray. Each millimeter deciding how long our future together will be. Finally, the tips of her toes were revealed and the bones were clean. The last test was done the cancer had only progressed to stage two. It was in the breast and maybe the lymph nodes, but at this point we knew the chances were extremely good that she had caught it in time. The odds were in our favor. The next step was surgery.

Photo is from Medline Plus a service of the U.S. National Library of Medicine and the National Institute of Health

Photo is from Medline Plus a service of the U.S. National Library of Medicine and the National Institute of Health

Photo is from Medline Plus a service of the U.S. National Library of Medicine and the National Institute of Health

Twenty –Four Hours and You’re on Your Own

Insurance companies have a formula by which they decide the amount of post- operative care a patient should receive after an invasive medical procedure. At the time of my wife’s radical mastectomy, the insurance companies deemed that twenty-four hours of post-operative care was all a women needed prior to being sent home. A doctor could only override this if there was a serious medical complication.

We checked into the day surgery wing of the hospital. Filled out the necessary forms, paid the co-pay then sat down. Ten minutes later our name was called. The instructions were simple;

“Go down the hallway take the elevator to day surgery pre- op on the second floor”

We stepped off the elevator went over to the desk and gave our name. The assistant behind the desk punched some keys on her keyboard looked up at us and said’ “Step through the doors to your right. A nurse will take you to your pre- op room.”

We had check in down stairs at six AM she was not taken out of pre-op until Ten AM. I kissed her one last time and said I would be there in post op when she woke up. The transporter, that’s what the person is called who wheels patients down to surgery, wheeled my wife down the hall and into an elevator. As the doors closed I silently prayed that she would be ok then I went to into the bathroom locked myself into a stall and cried. Thus began our separate journeys that day.

While my wife was in surgery, I was sitting in an uncomfortable chair in the day surgery wing of the hospital drinking coffee and watching the clock. The minutes slowly ticked by all I could think about was the worried look on my wife’s face and how I could not reassure her that everything was going to be alright. She was undergoing invasive surgery; she would have a piece of her body removed in the hopes of removing all the cancerous cells. All I could do was trust in the doctors and hope there would be no complications. I can’t remember how many hours I waited; it seemed like an eternity. The seconds ticked of like minutes, minutes ticked of like hours, and hours ticked off like days. Finally the telephone rang- the hospital gives the next of kin a cell phone so the doctor can call and tell you how the surgery went- the doctor’s voice on the other end of the line was clear and concise “The surgery went fine there where no complications. We got clean edges. You can see her in an hour.”

I thanked the doctor and asked, “ She’s alright?”

He responded; “She’s fine there were no complications the edges are clean.”

I thanked him again then the line went dead, what are you suppose to say at a time like that? Except thank God and thank you Doctor.

An hour later I’m in the recovery room holding my wife’s hand as she came out of the anesthesia. Nurses and doctors, standing two beds down, are arguing over who screwed up in the sedation of the patient they are standing over. The recovery room nurse came over and said my wife’s bed was ready and they would watch her for twenty-four hours. Then she would be released.

The hospital room was small and cramped the nurses came and went. The surgeon came in and reviewed the procedure and reassured us that everything was fine. My wife was in and out of sleep for most of the next  twenty –four hours. By early morning the nurse was in checking on her and preparing her for discharge. Part of the discharge procedure is to teach the caregiver certain procedures that will have to be done until the drains and stitches are removed. The doctor came in checked her one last time, said he would sign us up for a home health care visiting nurse then signed my wife out. It was twenty–four hours from the time she went into day surgery. We were on our own.

They Where More Than Just Words

If I Wanted to Pratice Medicine,I would Have Gone to Med School

Before we left the hospital, the nurse showed me how to “strip the drains” then “clean and dress the wound.” The drain is what the medical profession calls a clear flexible plastic tube that is sewn into the incision the other end of which is attached to a medium size clear plastic bulb. As the wound heals,  Blood drains into the tube and down into the bulb. Once the bulb is full,  You need to empty the contents other wise it will back up into the wound.

The nurse showed me how to “strip the line and disconnect the bulb” on one drain.   I was then given the privilege to do the other drain. The procedure is straight forward but disconcerting for a non- medically trained person. To strip the line you first pinch off the line as close as possible to the incision with you thumb and forefinger of your left hand. You then take your thumb and forefinger of your right hand, wet the tips for friction, squeeze the tube as tight as you can and pull down about three to four inches. This pushes the clotted blood through the line. You continue this procedure until you have reached the end of the line which is usually about three feet long.

Once the line is cleared and all the coagulated blood is in the bulb you then must pull the tube from the bulb and empty the contents of the bulb into the sink. Wash the bulb and reattach it to the line. Once both lines are cleared you then redress the wound with antibiotic ointment and a gauze pad. Safety pin the bulb to the specially designed garment for post mastectomy patients. You will do this procedure about three times a day for approximately three day. All the while your wife will be in pain and you will be fearful of causing more pain. The doctors and nurse didn’t bother to explain that the draining of the blood causes pain.   

Along with the physical pain, there is phycological pain that you both will go through. She will see her body for the first time with a large flat area, in my wife’s case, with no nipple, and a large purple scar. You try not to react to this sight but you realize that she is seeing her body for the first time with part of it gone. You are wondering what is she thinking, the last thing I wanted to do was to react in any way. When I saw the look on her face, I was scared. I kept saying to myself over and over “she doesn’t deserve this; what the hell happen?” I wanted to cry; I could not fix it. I could not take away the pain; I could not fix the physical problem all I could do was reassure her that she was still beautiful and desirable no matter what was happening. She was and still is!

At this point, I was angry at the world, the medical profession, and the HMOs in particular. I am taking care of my wife who just had MAJOR surgery, a piece of her body had been amputated. I’m afraid I might pull to hard on the line as I’m stripping it and pull the drains out; she’s also afraid of the same thing. I’m worrying about staff infection, I’m afraid she might slip, when I’m helping her to the bathroom or into bed, and I might grab her the wrong way to keep her from falling causing more damage. Five minutes of instruction from nurse and I’m qualified to do this! Are the powers that be out of their minds? If I wanted to practice medicine I would have gone to med school!

We got through those two weeks with out any major physical problems, but those first few days home where upsetting for both of us. We really didn’t know what warning signs to look for concerning post-operative complications. All we where told was if there is a problem come back into the hospital. We were lucky, but I’m sure there are people out there who where not as lucky.

The links at the end of this article are just a few of the places where you can go to get some answers.

Part Two will deal with Chemo treatments

Find The Cure

More by this Author


Comments 5 comments

Historian 7 years ago

Loved the article - the truth, the whole truth and nothing but the truth. Great job of informing caregivers and survivors about the reality of being a breast cancer survivor and the partner of one.


Amanda Lander 7 years ago

Excellent article; thoughtful as well as descriptive. It was very moving to read.


john  5 years ago

great article


grandmajennifer profile image

grandmajennifer 4 years ago from North Carolina

While the cancer we are dealing with is lung cancer, I can relate to your journey. It is something that is indescribable. As a care giver there are times when you feel so helpless because you can't make it right. You can't take away the pain. You don't understand why this is all happening. Your partner is going through changes and reacting in ways you just can't understand. My heart cries out to you. I wish you all the best.


William Green 4 years ago from USA Author

Thank you Jen. I read your blog, if you need someone to talk to send a message. I won't post it. I'll responed on your blog.

Bill

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