NikoleV Posted June 14, 2013 Share Posted June 14, 2013 How to Help Someone with Lung Cancer June 11th, 2013 - by Katie Brown http://blog.lungevity.org/2013/06/11/ho ... ng-cancer/ I’ve been thinking a lot about Lori Hope lately. In case you didn’t have the pleasure of knowing her IRL or online, here is a link that will give you a little more information about who Lori was. Lori was a lung cancer survivor who defied odds and outlived her prognosis. She was such an inspiration and source of hope to so many people in the cancer community. She was a rare soul. She was a cancer survivor who thought about others. I’ve known my share of cancer survivors who thought only of themselves. She often thought of those newly diagnosed and about their families. She wanted to leave this world a better place than when she was diagnosed and I admired her so much for how huge her heart was. Lori died September 2012 and is very missed by so many. Lori’s book. Help Me Live: 20 Things People With Cancer Want You To Know has been a reference for so many of us who support patients and families. A copy of that book sits on a shelf above my desk. I see it every day when I walk into my office. Today it’s inspired me to write my own list; a list specific to lung cancer. HOW TO HELP SOMEONE WITH LUNG CANCER Life’s financial burdens, family, children, employers and household chores don’t disappear when a lung cancer diagnosis happens. Navigating the medical process and surviving treatments and side effects are added to the mountain of responsibilities a person typically has. These are just 5 simple ways that you can help someone you care about who’s been diagnosed with lung cancer. 1. Don’t ask if they smoked. Instead, show them that you care. Empathy and sympathy comes easier to those who’ve been diagnosed with other types of cancers. With lung cancer there are misconceptions about the disease and who can get it. Some people may believe that lung cancer is solely a preventable disease and don’t know that all you need to get lung cancer are lungs. There may be blame or even guilt associated with a lung cancer diagnosis. While lifestyle can play a part with any health issue, it isn’t your place to assess the cause of their lung cancer or place any blame upon them. When you learn of someone’s lung cancer diagnosis you need to decide whether or not you’re going to be a part of their supporting team. In one interview, Lori Hope mentioned how “OK” it was to say that a person’s diagnosis was “unfair”. Saying a diagnosis is unfair lets the patients know that you care; you understand that it could happen to anyone and that there is no blame placed upon the patient for their diagnosis. 2. Listen. Listen to the patient. Some patients are blessed with family members and friends who will become caregivers and can support them throughout their lung cancer experience. Everyone wants to help and sometimes the wishes of the patient and even how they are feeling emotionally about their health and future can get lost in the day to day responsibilities. Don’t forget to include the patient in every aspect of decision making unless they defer all responsibility of that task to a specific person. Don’t forget to ask how the patient is doing and listen to the patient talk about how they are feeling about their situation. It’s ok not to know what to say or not have any answers. Just listen. Listen for the patient. Doctors’ appointments, treatments, procedures and life changes are overwhelming. It can be difficult emotionally to process all the things coming at you. Ask the patient to designate a healthcare advocate or “listener”. This person will go to doctor’s appointments, writes down questions and answers and records side effects and anything else the patient is experiencing and act as a liaison between the patient and their doctors. 3. Share hopeful stories and experiences. Don’t talk about how you lost someone to cancer to someone who’s just been diagnosed with it. The idea is to inspire and offer encouragement, not instill fear or dread or even false hope. If you don’t have any real positive stories of people surviving cancer, find some survivor stories to share and talk about everything else. Your conversations needn’t revolve around cancer all of the time. 4. Don’t ask. DO. “Let me know if I can help.” You’ve probably said these words many times in your lifetime in many different circumstances. Did you mean it then? Do you mean it now? There are so many things people can do to help, but the patient and their family will rarely ask for help. And saying those words simply puts the onus back onto the patient and off your shoulders. Actions speak louder than words. Set up a meal train or a chore chart among family and friends. Schedule a specific task and do it. Then do it again or do something else but keep helping as often as you can. A person diagnosed with lung cancer can use all the support and help you have to offer for the duration of their treatments and recovery. You’d want people to do the same for you. 5. Seek outside support. If you don’t have time to spare to take on responsibilities and physically help the patient, there are still ways you can help. You can research to find outside resources to help support the patient and their family. You can find volunteer organizations who offer rides to treatments, you can contact churches and groups to mow lawns and do light housekeeping and deliver meals. You can even find cancer support groups and mentors/support buddies for the patient. Ask them what their needs are and work to help fulfill them. You can find a listing of resources on the LUNGevity Caregiver Resource Center. Lisa66, Tom Galli and diane_arvizo 3 Quote Link to comment Share on other sites More sharing options...
michellep Posted June 14, 2013 Share Posted June 14, 2013 Thank you for sharing this with us Quote Link to comment Share on other sites More sharing options...
kimsmith Posted October 7, 2015 Share Posted October 7, 2015 One of my friend is diagnosed with Lung cancer. After completing his treatment he was just not happy with life.Very frustrated and losing his temper. I read your answer and come to know that how to treat them and what the patient feel. Thanks for your details.It help me a lott...... CindyA 1 Quote Link to comment Share on other sites More sharing options...
cclin001 Posted March 8, 2016 Share Posted March 8, 2016 Thanks for sharing this with us. It is very useful. Although I read many stories from time to time in this support site for finding more information for my mom, it is my first time to come into this caregiver forum. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 8, 2016 Share Posted March 8, 2016 Five superb ways to help! I'd add one: Try to find a way to remind your physicians and medical staff who treat you that you are a person, not a patient. A patient is a "thing". Too many of us are treated like things. Stay the course. Tom Lisa66, Meloni and Heyygirl 3 Quote Link to comment Share on other sites More sharing options...
Sher Posted September 16, 2016 Share Posted September 16, 2016 Happy to find this site. I've been helping my friend who was diagnosed with Stage 4 NSCL cancer in late November 2015. He found out that his back pain was caused by cancer on a Thursday, having been misdiagnosed two weeks previous in an ER. He had emergency surgery the next day to prevent the tumor, which had metastasized to his spine, from completely paralyzing him. He spent 36 days in the hospital trying to recover from a T2-T6 spinal fusion and has had to relearn to walk again through intensive physical therapy on top of being treated with radiation, platinum chemo, and now Opdivo. He also developed blood clots and an efflusion. He has his 6th treatment tomorrow and will most likely be re-scanned for results next week. I am his primary support, although he has received quite a bit of help from people in the local dance community, who know him from his volunteer dance instruction for the last decade. Right now he is doing pretty well, although his back still pains him and his favorite activities dancing & home improvements are beyond his capability. I am amazed at his ability to stay positive, although he has been through brief periods of anger & frustration. To others who have or are helping people with this cursed disease, I offer my condolences and support and ask that you think of my friend M__ as well as me as we continue along this course. I am also curious to see what others have to say about their experience if any with Opdivo. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 16, 2016 Share Posted September 16, 2016 Sher, Welcome here and thank you for helping your friend navigate his lung cancer treatment. I would not have survived without the assistance of my wife. She did so many things that were a necessary tonic to my nearly constant 3-year treatment process. If your friends only had brief periods of anger and frustration, then he is a much better man than I. I was a nut case! Martha and I laugh about it now, but she suffered the uncertainty of outcomes compounded by the misery of my "attitude". I was not a calm and serene patient and did not go quietly into any treatment. But, Martha stood fast against the ravages of my "cursed disease." I do not have experience with Opdivo but many here do. Here is some information on the promising immunotherapy treatment your friend is receiving: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
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