EFFECT OF HAIR LOSS WHILE RECEIVING LONG TERM CHEMOTHERAPY

When a person is receiving chemotherapy for cancer, side effects such as hair loss, diarrhea nauseam and fatigue can occur. These are distressing side effects, but many people cope by realizing that these side effects go away after the completion of chemo. Typically the doctor will tell the patient how many cycles of chemo they need, and the patient and family can look forward to the end of chemo. For example, if your doctor tells you that you need six cycles of chemo given at three-week intervals, you can look ahead about eighteen weeks and start counting down with each cycle you receive. That sense of being able to count down and celebrate the end of chemo can be very important to patients and families.

       However sometimes cancer returns-in this case it is termed recurrent cancer or metastatic cancer (metastatic means the original cancer has spread to another part of the body). The good news is that new chemotherapy drugs are given long term. This means the patient does not know how long he/she will receive the drugs and so can't look forward to the end of chemo and chemo side effects.

The long-term chemotherapy drugs are often given until:
      1. The cancer stops responding to the drug. (Over time cancer cells can build resistance to chemotherapy.)
      2. The patient develops dangerous side effects. (One example would be severely depressed bone marrow,       which causes a decrease in the body's ability to fight infection.)
      3. The patient decides to stop taking the medication. (This could be a personal decision based upon quality of       life issues.)

Depending upon the type of drug used, one side effect of long-term chemotherapy can be hair loss. Please read the following scenario to understand the importance of clear communication regarding hair loss and long-term chemotherapy:

Sarah is a 66 year old with recurrent breast cancer. She is participating in a research study and receives telephone calls from a nurse to help cancer patients cope with side effects. Sarah is on long-term chemotherapy and one of the side effects bothering her is hair loss. The nurse asks Sarah to explain what hair loss means in Sarah's life. Sarah states, "Well I am 66 years old and no longer a beauty queen." This is Sarah's way of stating that her hair loss affects her body image despite the use of wigs, scarves, and hats. Sarah's nurse asks her if talking about her feelings with her family is helpful. Sarah's response is surprising and points to the need for clear communication. Sarah states, "No, my family does not understand, and they don't mean to, but they make me feel worse." The nurse asks Sarah to explain what she means and Sarah states, "My family say things like, 'Don't worry, Mom your hair will grow back like it did that last time',"[meaning after chemo was finished with her original diagnosis]. Sarah's voice cracks with an anguished sob. The nurse says, "Sarah, I'm so sorry please go on when you are ready." A little silence is tolerated while Sarah collects herself and her thoughts and then explains her feelings-she has a satisfying life as a wife, a mother of grown children, a grandmother and a home health aide. Her days are busy and fulfilling and she often forgets about her breast cancer-until she is brought up short by glancing in a mirror. Then her hair loss reminds her of her breast cancer. For Sarah, the hair loss is a symbol that her very survival depends upon her continued response to chemotherapy. Sarah does not like living with hair loss. And she cannot anticipate an end to the chemo like she could the first time around when she could count down the cycles and look forward to the return of her hair. Now she realizes that the return of her hair would mean that her cancer was no longer responding to the chemo, and she has already been told that this chemo is the best chance she has. Sarah is able to ay this to an anonymous nurse on the phone, but she is unable to say this to her family. She feels that she must maintain a positive attitude for her family's sake, and so when they say, "Oh mom, your hair will grow back", she just smiles and says, "You're right, it will."

      As Sarah's story tells us, clear communication among family and friends is very important. Often people "tiptoe" around issues, trying to avoid hurting the other person, and in the process, they unknowingly cause hurt. If feelings are discussed openly, the burden can be shared and often lifted, rather than weighting down a person's spirit like a heavy rock. Think about the times that you shared a feeling that was weighing you down, and in so doing, you felt a sense of freedom and uplifting. Maybe the problem did not go away, but knowing that another person understood and cared and connected with you rekindled your spirit.

      Good communication includes active listening. Active listening is defined as: "a way of listening that focuses entirely on what the other person is saying and confirms understanding of both the content of the message and the emotions and feelings underlying the message to endure that understanding is accurate."
www.colorado.edu/conflict/peace/glossary.htm

Listening actively is one of the most loving acts one person can do for another.

To listen actively:

1. Allow periods of silence. Silence often makes people uncomfortable. Sometimes we feel we have to rush in and fill the silence, and we end up making a mistake such as Sarah's family did when they told her not to worry, as her hair would grow back. This often stops communication dead in its tracks. Try to become comfortable with short periods of silence. During the silence, measures such as looking the person in the eye, nodding your head, holding the person's hand, or quietly stating, "Go ahead when you feel ready", will help the other person feel comfortable enough to gather their thoughts and move ahead with the conversation.

2. Use verbal encouragers such as, "Yes", "Aha", "Mmm", as well as non-verbal encouragers such as head nodding, smiling, and body language. www.bic.com.au/Call%20Centre%20No%20More%20hangups/ccc/resources/glossary/fgfs_idx_OLD.htm

3. Listen to what the person is saying with your full attention. When you listen, devote your full attention to the speaker instead of thinking about what you want to say next.

4. Listen to what is said as well as what is left unsaid. Clues to unsaid communication are often non verbal such as the look in the speaker's eyes, or the way they are holding their bodies or what they are doing with their hands.

5. Ask for clarification. If you don't think you understood what the person has said, tell them how important it is to you that you understand and ask them to restate what they said.

6. Repeat or paraphrase what you think you understood and ask the speaker if that is correct. For example, you could say, "I think I heard you say that it is difficult living with this hair loss because it is a continuous symbol of having breast cancer." "Is that what you meant?"

7. Avoid disapproval or judgment. For a person to openly communicate their feelings, they need to feel a sense of trust. Feelings are not wrong, and they need to be brought out, discussed and dealt with in order to have peace of mind.

8. Never assume you know what is on the other person's mind. As in Sarah's example, her body image was affected by her hair loss, but this was not the most distressing aspect for her. It took active listening and asking for clarifications for Sarah to reveal her deeper feelings.

    In times of illness, we often want to help another person, but sometimes don't know how. Active listening is one way we can help others. Active listening is one of the most loving and respectful acts of a kindness we can show toward another human being. With practice, active listening is a skill that anyone can learn and use.