HANDLING LUNG CANCER FOR THE FAMILY AND CAREGIVER


39.1 SOME OVERALL SUGGESTIONS

Family and close friends can play a vital role in helping a cancer patient. Here are some things you can do for a family member with lung cancer:

1. Do the research. Some of the information patients will see is hard. It is frequently better for a close family member to cull through medical studies, and help locate the best physician, hospital, and form of treatment.
2. Support with Chemotherapy or Radiation. If a patient is undergoing chemotherapy or radiation, make arrangements to accompany him to the physician or hospital or at least pick him up. Dealing with cancers every day, oncologists may not have time to provide the emotional support a family member can.
3. Handle Medical Bills and HMO Problems. Dealing with HMO’s can be time-consuming and exasperating. Taking this task off the patient’s mind can be a welcome relief.
4. Contact Support Groups for the Patient and Spouse. Alcase is the national lung cancer support group. Find out about support options, learn about new treatment developments, and learn from others how to deal with the disease.
5. Keep Track of Records. Mistakes happen especially as nursing and medical caseloads increase. Keep duplicate material about the patient’s medical condition in addition to the hospital. Doctor Smith is the patient’s usual doctor, but while on vacation, Dr. Jones orders a test. As a safegap, we want to make sure there is appropriate followup. Likewise, we need to maintain for the hospital a list of medications and the patient’s current condition.

39.2 RESEARCH AND DEALING WITH LUNG CANCER

Some patients will want to fully understand their disease and obtaining information about it is helpful in dealing with it. Most however, say they would rather not spend their time thinking about metastasis and disease process. For this group, the family member who can studiously but quietly obtain information about treatment alternatives can provide a great help. For many, simply saying, “Your doctor recommends this particular form of chemotherapy, my research shows he is very well-qualified and this is the best choice!” is sufficient.

39.21 Family Relationships

Here are some suggestions from the online lung cancer support group livingwithit.org.

“Some people exhaust themselves trying to be the same healthy, energetic spouse/partner they were before cancer. Respect your body’s signals for rest. Your spouse/partner is probably juggling a lot of responsibilities now - trying to deal with fears of losing you, keeping up with household chores, taking care of children. Let your spouse/partner know it's all right to take a break or to find some quiet, personal time. Talk! Your spouse/partner can love you and still not always know what you want all the time. Honest and open communication can help your spouse/partner feel more comfortable about helping you throughout your illness.
Encourage listening. Your spouse/partner may feel the need to solve problems, make things better, or offer advice. This reaction can be a way of dealing with feeling powerless, but it also can make you feel misunderstood, frustrated, unsupported, or even rejected.

39.22 Patient Feelings

A diagnosis represents a tremendous change and the patient may feel shock, devastation, anger, depression, frustration, and guilt.

39.3 PARTICULAR FAMILY ISSUES

39.31 Men and Cancer

While many women can talk about an illness, many men become uncomfortable. Some are not happy to see large numbers of people come to the door and see them in a weakened position. Discuss feeling but differences and preferences must be respected.


39.4 PRACTICAL TIPS

One support group put together this list of “25 PRACTICAL TIPS TO HELP THOSE FACING A SERIOUS ILLNESS”:
1. Don't avoid me. Be the friend...the loved one you've always been.
2. Touch me. A simple squeeze of my hand can tell me you still care.
3. Call me to tell me you're bringing my favorite dish and what time you are coming. Bring food in disposable containers, so I won't worry about returns.
4. Take care of my children for me. I need a little time to be alone with my loved one. My children may also need a little vacation away from my illness.
5. Weep with me when I weep. Laugh with me when I laugh. Don't be afraid to share this with me.
6. Take time out for a pleasure trip, but know my limitations.
7. Call for my shopping list and make a "special" delivery to my home.
8. Call me before you visit, but don't be afraid to visit. I need you. I am lonely.
9. Help my family. I am sick, but they may be suffering. Offer to come stay with me to give my loved ones a break. Invite them out. Take them places.
10. Help me celebrate holidays (and life) by decorating my hospital room or home or bringing me tiny gifts of flowers or other natural treasures.
11. Be creative! Bring me a book of thoughts, taped music, a poster for my wall, cookies to share with my family and friends...an old friend who hasn't come to visit me.
12. Let's talk about it. Maybe I need to talk about my illness. Find out by asking me: “Do you feel like talking about it?”
13. Don't always feel we have to talk. We can sit silently together.
14. Can you take me or my children somewhere I may need transportation? To a treatment?....To the store?...To a doctor?
15. Help me feel good about my looks. Tell me I look good, considering my illness.
16. Please include me in a decision. I've been robbed of so many things. Please don't deny me a chance to make decisions in my family...in my life.
17. Talk to me of the future. Tomorrow, next week, next year. Hope is so important to me.
18. Bring me a positive attitude. It's catching!
19. What's in the news? Magazines, photos, newspapers, verbal reports, keep me from feeling the world is passing me by.
20. Could you help me with some cleaning? During my illness, my family and I still face: dirty clothes, dirty dishes, dirty house.
21. Water my flowers.
22. Just send a card to say "I care."
23. Pray for me and share your faith with me.
24. Tell me what you would like to do for me and, when I agree, please do it!
25. Tell me about support groups like Make Today Count, Cancerwise, and American Cancer Society so I can share with others.
From the brochure "25 Tips to Help Those Facing a Serious Illness" from Saint Anthony's Hospital's Make Today Count.

Another cancer survivor provides these suggestions

Educate and empower yourself. Learn about wellness, which is making positive choices toward a more balanced and healthy lifestyle. Maintain a positive attitude. Attitude is everything! Belief is biology! Humor helps! Lighten-up! Surround yourself with humorous books, movies, videos, and television programs. Laugh every day! Connect with your spirit. Take quiet time for yourself, meditate, and pray. Keep a journal. The rules are date the entries and don't make any other rules. Practice deep focused relaxed breathing. Go outdoors and walk briskly for thirty minutes every day. Use your senses for healing. Find healing through touch and massage. Use wonderful scents to sooth your nerves such as cederwood, patchouli, moss lavender, ylang-ylang and chamomile. These can be found in bath and body products, essential oils and placed in aromatherapy units. Listen to relaxing music. Drink calming teas. Chamomile is especially good. Nurture yourself through intimacy with a loving partner. It is an important part of maintaining wellness so explore acts of love and tenderness. Remember the most important sexual organ of the body is the brain! Enjoy. Poor concentration and memory loss may be a side effect of cancer treatment so know that you are not losing your mind. Be patient with yourself and ask for family and friends to be tolerant. Don't forget the basics of good health. Exercise, drink 8-10 glasses of water per day and eat nourishing, well-balanced meals, rest and stay connected with people. Remember every day is a new beginning. Face each day with a positive outlook. Stop asking "Why me?". Know that the answer is BECAUSE. Words of Wisdom to Consider
"Cancer may rob you of that blissful ignorance that once lead you to believe that tomorrow stretched forever. In exchange, you are granted the vision to see each day as precious, a gift to be used wisely and richly. No one can take that away." Anonymous

39.41 Sharing Your Feelings

Many patients provide inspiration in online and personal support groups. Some note that sharing feelings helps:

“I feel it easier to on with my normal life people know that is going on
with me. I think this is a pretty personal decision, but for me, I feel like I’m hiding something if I spend any significant time with someone
and they don’t know I have cancer. I’ve also found everyone to be completely understanding and willing to help out. My side effects have
been pretty limited, but they do affect my energy level,... (Cancer Survivor’s Network (2)

Gender can play a role, with men less able to share their feelings of pain, weakness, or discomfort. For some, drawing out feelings may help, while others would simply prefer to be left alone. Others offer different advice. A wife of a cancer patient notes three points:

1) Learn to accept help.

2) Redefine and accept your new role,

She wrote about her husband:

“I have had to learn to accept Gary the way he is and love him for who he is and for the reasons why I married him. All of this has brought that back around full circle. At this point Gary has his little house out in the backyard. It started out to be a little shed, but it looks like it could be a little efficiency apartment. He has made a Murphy bed in there. It's the size of an efficiency apartment with a big 8-foot porch on it. So he goes out and he stays in his little domain, and he feels as though he is more in control of himself, which I allow. He always asks me to forgive him for going out there, but I let him do what he needs to have his life, too.” ACS (American Cancer Society) (2)

Someone with a third with a different type of cancer wrote,

“To enjoy each day. To set your priorities. To not give in to feeling down. To decide you're going to be around for a long time so you better be nice. To help your caregivers by eating and drinking what they give you and just doing your best to recover. To even eat stuff like jello and rice pudding without kvetching. To pray every day for everyone else you know who has cancer. On my computer I tape lift-ups like this "Prayer for the New Year" by St. Francis De Sales.”

That prayer says,

Do not look forward in fear to the changes of life;
Rather look to them with full hope that as they arise,
God, whose very own you are, will lead you safely through all things;
And when you cannot stand, God will carry you in His arms.
Do not fear what may happen tomorrow;
the same everlasting Father who cares for you today
will take care of you today and every day.
He will either shield you from suffering or
will give you unfailing strength to bear it. (2)

Many find solace in their religion, and religious leaders emphasize that those in need are always welcome.

39.42 Finding Personal Strength

Some find surprising strength in confronting their illness.“Don’t Underestimate yourself or the people around you. Nobody knows what they are capable of until faced with challenges. Let people help any way they are able.” (2)
Yet others speak of recognizing your limitations. “Don’t try to be superheroes. Some People exhaust themselves trying to be the same helathy, energetic spouse/ partner they were before cancer. Respect your body’s signals for rest.” (2). Others speak of enjoying small pleasures, a pretty flower, or a night out.

39.43 Speaking with Others.

Many find that sharing similar experiences is helpful. “I have met a lot of strong people through my treatments and Drs visits. Always remember you are not alone on this journey.”

39.44 Religion

We are given a short time here on earth, and many find solace in their church or synagogue in understanding some of the mysteries of life. A poster on the American Cancer Society website writes,
The two things that have helped me the most are 1) all the prayers and the understanding support from my son and my granddaughter (both of whom flew out to visit me when they learned about the Cancer Monster that had attack my body ... and my two beloved older brothers (who also flew clear across the country to come visit me when they learned of my plight; and 2) my ability to maintain a DELIGHTFUL sense of humor no matter how depressing or shattering the news was that the doctors were obligated to present me with as the different test were completed. I've always needed laughter in order to survive like most people need air to breath ... and I still do ... so a sense of humor is of paramount importance to me! I just thank God that I've been able to maintain mine ... Amen!

She found this prayer inspirational

Do not look forward in fear to the changes of life;
Rather look to them with full hope that as they arise,
God, whose very own you are, will lead you safely through all things;
And when you cannot stand, God will carry you in His arms.
Do not fear what may happen tomorrow;
the same everlasting Father who cares for you today
will take care of you today and every day.
He will either shield you from suffering or
will give you unfailing strength to bear it.

Many find solace in their religion, and religious leaders emphasize that those in need are always welcome. Ministers and religious leaders are trained to deal with the mysteries of life and dealing with pain and illness. Even if you were less observant, utilize the resources of your church, mosque, or temple.



39.5 THE ROLE OF THE CAREGIVER

39.51 Rewards of Caregiving

While care-giving is difficult, many find it rewarding. “97% said their roles were important, 81% stated that they wanted to provide care and could not live with themselves if they did not assume caregiving responsibilities. 67% said they enjoyed providing care.” Strength for Caring (1).
Yet, care-giving takes its toll. Many care-givers were themselves taking medication, a quarter noted their own physical limitations, about a third found the role demanding, and close to one half noted financial limitations.

39.52 Help for Caregivers

82% of caregivers were married and 71% women. The large number of women in the caregiving role brings up an obvious point, men in the family should be asked for their help, whether in dealing with insurance questions, helping to find information, or assisting with medical visits.
That is not to say men do not play vital roles, “I have a lot of support from my husband and my children.” (2). Practical advice can be important too. “Take advantage of community resources. You and your loved one can benefit greatly from resources in your area. Utilize transportation agencies, home care services, support groups and educational programs.” (1).

39.53 Leave of Absence from Work

Many married women try to juggle 3 roles, raising a family, working, and caregiving. The first two are demanding in themselves, adding a third is draining. Consider a leave of absence with many companies providing unpaid leaves of absence for caregivers.

39.54 Tasks for Caregivers

Doctors can have limited time and important information can become lost. An astute caregiver can transmit patient information in a clear and well-organized fashion, for example explaining when pain or side effects occur. One needs to be careful that the patient is not put aside, and many older patients talk of the phenomenon where their condition is discussed as if they are not present or are somehow incompetent. Substantial time can be required. Make time for yourself.

For others, helping a close family member continue to enjoy life can be the important contribution: “I do little things to make him smile. He had bad days when we will just sit and talk, others when he feels up to it will go to dinner and a movie like a normal couple.”



REFERENCES

1. www.strengthforcaring.com/resource/factsheet.html.
2. American Cancer Society, The Cancer Survivor’s Network, www.acscsn.org.
3. www.Livingwithit.org.

Lung Cancer and Mesothelioma is a comprehensive overview of lung cancer treatment and research comprising 41 chapters and over 480 pages. The book reviews chemotherapy, gene therapy, radiation, experimental treatments and other topics, with excerpts available below.      
                       

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