Editor's Note: This article was originally written by patient expert Tom Brown.
With Breast Cancer Comics by Dash Shaw
On December 7, 1994, I took my wife to the hospital for a biopsy on a lump in her right breast. She went into the operating room at 7:30 a.m.
Around 9:00 a.m., the doctor who did the procedure came out of the operating room. I stood up and asked him how the operation went. It went very well, and Barbara was fine but still under the influence of the anesthesia, he said.
When I asked him what was next, he suggested that we go into a private room where we could talk. We went into a small TV room just off the hallway. I asked him to explain the procedure that he used to take the biopsy. He went into some detail and said that he had removed a piece of the tumor about the size of a quarter from Barbara's breast.
The tumor sample had to be sent to a pathology lab for complete analysis. I asked him what it looked like. It looked like a malignant tumor, he said. And he was so certain, in fact, that if the pathology report came back negative, he would order another biopsy for my wife. I could feel a huge knot turn in my stomach. I tried to remain logical and unemotional. Three days later, the results from the pathology lab confirmed that it was cancer.
A combination of shock and despair enveloped me in a cocoon of self-pity, when I heard the news. Although I was thrown into a very serious situation, totally void of background knowledge on how to deal with breast cancer, I decided that I needed a plan for Barbara and me to get through this.
The first 48 hours after a diagnosis of breast cancer is a critical time for the male caregiver. Both you and your loved one will be dealing with a flood of emotions. It is important to take that time to discuss with your loved one a strategy that you will use during her treatment. The points below are not intended to be all-inclusive. Instead, I highlight a few points that you should consider right after diagnosis:
- Establish Roles. One of the very first discussions you should have with your loved one is what role each of you will have during the cancer treatment period. In our situation, Barbara and I decided that I would be the caregiver and task manager, and she would be the patient. Since this SharePost is about breast cancer husbands and male caregivers, I will make an assumption that men reading this are also in that role.
Being a breast cancer caregiver is a demanding job that stresses you both physically and mentally. You need to sit down with your loved one and define what you are able to do for her during the treatment period.
You may be in a situation where you cannot accompany her to the breast cancer treatment appointments.
If so, you should seek the help of a friend or relative.
2) Communicate and Listen:
This is probably the most important job and one of the most challenging for the breast cancer caregiver. After diagnosis, your loved one will have to live with the physical, emotional and social consequences of having breast cancer. You, the caregiver, must be able to listen to the needs of the patient. Listen to her fears and be supportive.
There are no magic answers.
Be mindful that men and women generally communicate differently. Women often express their feelings more openly. When your loved one is talking, listen intently before offering a response. Sometimes she only wants you to hear how she feels and is asking for support, not advice.
A simple hug and the words "I understand and will always be here for you" is all the response that is needed. I think that establishing open and honest communication throughout the experience helps both the caregiver and the patient.
3) Educate Yourself:
Most male caregivers have no idea what to expect when their loved one is told that she has breast cancer. And, in fact, your wife or girlfriend may have incomplete information about breast cancer treatment as well. A new study published this week by the nonprofit CancerCare indicates that while awareness of breast cancer is strong, with 76 percent of women surveyed saying they knew a "fair amount" about breast cancer, less than a quarter of women ages 50 to 65 knew about newer breast cancer therapies beyond chemo and radiation.
It is imperative that the caregivers learn as much about the disease as possible in a very short period of time. There are hundreds of sites on the Internet devoted to this subject. You can read my previous SharePost for my recommendations on Internet resources for breast cancer husbands; Expert Patient PJ Hamel also has suggestions on how to use the Internet to find the best breast cancer information and support. Don't forget that your loved one's cancer treatment facility will have useful brochures and pamphlets to help you better understand breast cancer caregiving.
You should learn as much as you can about the treatment your loved one will undergo. If possible, take a tape recorder to every meeting that you have with your doctors and ask permission to record the session.
At the very least, I would keep a journal with very detailed notes to include the date, time, type and amount of drugs that your loved one is taking. There is a very good chance that, at some point over the course of treatment, your
wife or girlfriend will develop an infection and have to be hospitalized.
With your notes, you can easily tell the attending physician what medication your loved one has taken and when. Finally, you will have to be the one to educate the rest of your family. You will be the one who passes along the information on your loved one's treatment. It is important to not shield your loved one from your family. They have concerns too.
) Take Care of Yourself:**
Regardless of your age and physical condition, as a caregiver you will experience both emotional and physical stress. You will feel shock, anger, fear, sorrow, guilt and maybe even hate just to name a few. If you are a full time employee, you will have to balance your work with taking care of your loved one. Then there are the domestic responsibilities of tending the house, cooking, cleaning, paying bills, etc. If there are young children at home, they need your attention also. Caregiving is demanding and stressful no matter what the circumstances are.
I mentioned keeping a journal to track your loved one's schedule. You should also consider a place each day in the journal where you can write about your emotions. It is a way of venting, and it is useful. Lastly, you must take care of your physical health. If you are not sleeping and getting the required rest, it will eventually result in affecting your judgment and your health. If you get a cold or the flu and cannot care for your loved one, seek help from a family member or a friend.
As a final note, don't expect to be perfect. You will make mistakes along the way. But, learn from your mistakes, and improve. Don't dwell on them too long. Make adjustments to your plan and move forward. It takes time to learn how to be a successful breast cancer caregiver. Go slow and methodical in your approach to caregiving. Believe me, your loved one will appreciate every little thing you do for them, including simply saying, "I love you."