Stress affects all of us in one way or another. By definition stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.
When I was 22 I was diagnosed with early stage cervical cancer. I had two surgical procedures and years of close follow ups, but I went on with my life and never spoke about it with anyone…I mean I was 22…my friends didn’t want to talk or hear about anything like that.
When I was 29, my seemingly healthy, never sick dad lost his voice. The weird thing was he didn’t have a sore throat and he didn’t feel sick. Just a little back pain. A trip to his GP, an ENT and eventually a pulmonologist lead to an extensive stage diagnosis of lung cancer with metastasis to the liver. The two tumors in his left lung had paralyzed his vocal cord which is why he lost his voice. At that time, not knowing anything about lung cancer, I thought…well he can do what I did. We caught it early as soon as he had a symptom! So he can have surgery…maybe at the worst chemotherapy, but he’ll be ok, just like I was. What I didn’t know at that time that there was no early detection for lung cancer, my dad wasn’t a candidate for surgery and chemotherapy and radiation would be palliative at best. I was his caregiver for 11 months and 21 days. 12 years ago my family received very little compassion and there was no support for people affected by lung cancer in my area and really very little support nationally. So we set out to change that. I co-created the first ever online lung cancer support community for people affected by lung cancer. Today we have over 400,000 posts and it is a proud service of LUNGevity Foundation. (www.LUNGevity.org) LUNGevity also offers incredible online resources—so that no matter where you are in the world, whether or not your hospital offers an in person lung cancer support group, all you have to do is log in or call us and you’ll never go thru your lung cancer journey alone. I’ve been on staff with LUNGevity since 2010 and I’m the VP of Support and Survivorship Programs. I want people to know that lung cancer is the deadliest cancer killer. It kills more people than breast, prostate, colon, pancreatic cancer COMBINED. There is still no early detection test. By the time there are symptoms the cancer is usually in stage 4. Treatment options are limited because of the lack of funding for research and the survival rates are very low. About 435 people die from lung cancer each and every day. That's like a jumbo jet crashing to the ground---every single day. I want people to know that anyone, regardless of age, gender or even smoking history can get lung cancer. If you breathe, you can get lung cancer too- even if you've never smoked a cigarette. And for those that did smoke- they deserve treatments and a chance to live too. It's time to stop the stigma and join together to fight lung cancer. It's time to fund research so that we can find early detection and targeted therapies and support people and help them live with this disease until it can be stopped.... It's time to talk about lung cancer, share lung cancer stories and spread HOPE, so that others can survive. I write about lung cancer, advocacy, life, end of life, health issues and philanthropy. Hearing that you or your loved one has lung cancer can be shocking and overwhelming.
There are many emotional stages that you and your loved ones experience even before a treatment plan is made and a communication plan is needed. One way to help adjust is to be sure you, your family and your medical team have good communication and a solid understanding of each other. By learning communication tips and tools, you’ll be able to advocate for the care you desire and the support system around you will be able to clearly understand your needs and wishes. You’ll need to speak clearly and openly with your medical team. To make sure you hear your doctor and understand what he is saying, ask questions and verify his answers to you. Make sure your doctor hears and understands your needs and concerns as well. Speak up, bring two lists outlining the concerns that you want addressed during your office visit. Keep one list for you and give the other list to your doctor. Make notes on your list and encourage your doctor to make notes on his list. Make a plan with your medical team on your diagnosis, the immediate next steps, your treatment options, your exact treatment plan, and what to do when there are side effects. You also need a plan on how and who you will communicate your needs, concerns and wishes to. If possible bring someone with you to your doctor’s appointments. People hear things differently, which is why it is important to write things down, verify what you are hearing, audio record the visit, and/or bring another set of ears to hear what is being relayed to you. Getting in plain writing a detailed description of your office visit and treatment plan would be ideal but it isn’t always probable or possible, so using one or more of these tools to get a clear understanding of your office visit and expectations will help keep you more at ease as you move forward in your treatment. You also need to speak clearly with those around you to make sure your needs are addressed. Your family, friends, employers and coworkers want to help you. But they can’t help unless you let them know what it is you need. This can be a challenge for some people who have difficulty asking for help. To help those who have a difficult time asking for help, there are tools like Caring Bridge pages, Meal Train and other websites that allow you to list your needs and things in your everyday life that you may need assistance with. You provide the website to your friends and family and they take it upon themselves to sign up for specific chores and to help with specific needs, like providing meals, yard work, transportation to and from treatments, and even a night out or much needed break for the caregivers. Nurse navigators and social workers may also be available to help you communicate your needs and find the resources to help you during this journey with lung cancer. There are also services that help with legal and financial needs as well. For a listing of resources that can help you talk about lung cancer, please visit http://www.lungevity.org/support-survivorship/asking-right-questions What tips or advice would you give someone on the importance of communicating and talking about lung cancer? In the business world, when a partnership ends there's a lot of fan fare. Someone closes their doors for good, one company gets bought by another, or people go their separate ways. There are usually contracts and letters of dissolution or maybe a partnership was only for an agreed upon project or length of time. Today my partnership ended with EmpowHER Blogger Network. THEY came to me late in 2010 to ask me to blog for them. At that time I let them know that I was writing for LUNGevity and my active site "An Advocates Perspective" and they were ok with that. In fact, they encouraged me to content share and post about what we were doing at LUNGevity and what was happening in the lung cancer world. They wanted me to blog about current lung cancer topics or trending issues, and I did. Each and every time I referred back to LUNGevity. I'll admit I haven't blogged since the summer for their site. My career has me travelling very often and the fall is incredibly crazy for lung cancer organizations- most of our events and many regional HOPE Summits were happening from May until November. Today I decided to ante up and upload 3 new blogs to the EmpowHER site. Afterwards I posted them to all my social media platforms and asked our supporters to share. Less than an hour later my 3 latest blogs were deleted. Here is what they said You can go here http://www.empowher.com/users/iamkatiebrown and see my previous blogs and how ALL of them since 2011 refer to LUNGevity.
I take it this partnership has abruptly ended. Wow. Bloggers beware. Thanksgiving is my favorite holiday. There are no expectations of gift giving or receiving. It’s simply a time to reflect and give thanks for the blessings that each of us have. It’s a true holiday of the heart.
I’m thankful for my family, our friends and the life we share. I’m thankful for the silly little dog laying near me while I type this and that we get to gather for a feast on Thanksgiving Day. The holiday season can also be a time of grief for some people. I notice the loss of my loved ones more deeply during holidays and special dates. There’s a bittersweet sense of what was and what never can be again. The two people I miss the most are my mom and dad. My mom was my best friend and supported me in my advocacy efforts and mission to support people impacted by lung cancer. My dad was my biggest fan and losing him to lung cancer 12 years ago was devastating to our family. Those losses changed the course of my life and career. What we all can be thankful for is that for someone diagnosed with lung cancer today, there is much hope. There are more treatment options than ever before. The pace of the research is accelerating and yielding promise. Clinical trials, targeted therapies and immunotherapies are extending lives. Our work at LUNGevity is creating a world with more survivors, more information, education, resources, and support for those impacted by this disease. As another holiday passes without those loved ones around my table, I can be thankful that I could turn my losses into something positive and continue to honor their lives daily. I keep those of you close in my heart who are experiencing grief, pain or sickness this holiday season. I’ve started new traditions with my little family and my large extended LUNGevity family of survivors, caregivers and supporters inspire me every day. Please know that we are here to help support and inspire you too. I’m wishing you and yours a blessed Thanksgiving. Best hopes and wellness for the New Year. Being a young adult without parents is hard, but it isn’t rare, and unfortunately losing a parent to lung cancer isn’t uncommon. Statistic s shows that one in two men and one in three women will have cancer in their lifetimes, and one in 14 of us will be diagnosed with lung cancer. That’s just unacceptable to me and it’s time for our nation to care.
I was daddy’s little girl. I wasn’t done with him. I needed his advice and guidance and presence in my life. I feel robbed and I miss him every day. When he was first diagnosed with lung cancer, I had hope. Before I learned about the disease I had hoped that it was caught early and that there would be successful treatment options. I had hoped this was something our family would survive. I had hoped he would live to be a gray-haired grandfather and enjoy retirement. He didn’t make it. He died a year before his 65th birthday. In the eight years since he’s been gone there have been no improvements in his type of lung cancer and very limited progress made in other types of lung cancer. Although lung cancer is the deadliest cancer killer, there is still no early detection test for the disease and very little funding compared to other cancers. The 5 year survival rate is less than 15%. When I think about my dad, I wonder what we would be doing, what he would think of my kids, his grandchildren; the grandson who would now be taller than he was. A granddaughter he didn’t know about, who was born four months after his death, and is now 7 years old! I wonder how different our lives would be had lung cancer not entered it. I wonder what it would have been like if he had a fighting chance against lung cancer? Although my hope waned during my dad’s lung cancer journey, I never lost it, even after I lost my dad. Hope lingered and grew little by little with each survivor I encountered. With each connection I made to another patient and another caregiver, some hope would grow. Eventually targeted therapies and drugs like Iressa and Tarceva came onto the pipeline- and someone with a specific type of lung cancer who would have been in the 85% statistic would now not only LIVE with lung cancer, but achieve full remission! That fuelled my hope! I’ve been a lung cancer patient advocate for 8 years now and we still have a long way to go in terms of funding, treatments and compassion for those diagnosed with this disease. There is still no early detection test; it’s still the #1 cancer killer and claims about 435 lives every single day. But as another holiday passes without my father, I actually have more hope than ever this year because of LUNGevity. www.lungevity.org LUNGevity is the leading private funder for lung cancer research and has propelled support and advocacy for patients and their families to a whole new level. They have the largest lung cancer support network and grassroots network and a lung cancer summit specifically to honor lung cancer survivors. LUNGevity is creating HOPE. It is my hope that one day no one loses a parent prematurely to a disease as devastating as lung cancer. It is my hope that people diagnosed with lung cancer will have a fighting chance. I will be spending this holiday thinking about my dad and about how much I miss him in our lives. I’ll be reflecting on how his lung cancer journey sparked compassion and a life’s mission within me and how his life and death have inspired so many others. Thank you for everything, dad. I miss you like crazy! I still have HOPE! Throughout my 12 year career as a lung cancer patient advocate, I’ve had many people ask me questions about advocacy, how to get started and how they can make a difference in the fight against lung cancer with LUNGevity Foundation.
I’ve consolidated those questions into 5 key points so that others who may be interested in taking that next step will have some idea of what to expect. 1. Why Advocate? Do you know what an advocate is? Chances are you’ve been an advocate in some form the moment you or your loved one was diagnosed with lung cancer. But here’s the definition of an advocate; (n) a supporter or defender (v) to champion a cause and to stand up for what you believe in. A lung cancer advocate will support themselves or their loved one thru the cancer journey, advocate for treatment options and medical care, educate the public about the disease, its stigma and lack of funding for research and can work towards changing the landscape of their local communities. Some people think you need to storm the hill and change policy or have a million dollar campaign to be considered an advocate, but that is simply not the case. You can be an advocate just by using your voice, speaking up during those times when other’s cannot, writing a letter to the editor, posting your thoughts in a blog or tweeting a 140 character message. 2. Learn About Lung Cancer. Before you can effectively communicate anything, you’ve got to know the facts. Who can get lung cancer? (Anyone can get lung cancer regardless of age, gender and smoking history) What is the 5 yr survival rate? (16%) How does it rank in terms of federal research funding? (Less than 5% of the NCI budget goes towards lung cancer research) 3. Learn About LUNGevity. You need to know what LUNGevity does, what programs and services we provide, how to access them and what our research contribution is. Our website www.LUNGevity.org is a great place to learn about all of those things. In short summary we are the largest private funder of lung cancer research, offer the largest online support network with resources, education and access to experts,and we have the largest grassroots advocacy network. 4. Learn About the Ways You Can Help. The advocate needs to decide what they are championing for. Is it better medical treatment for themselves or their loved one, seeking emotional support or education for patients and family, changing the stigma, championing for survivors, creating ways to raise awareness about the disease, creating ways to initiate changes in your local community or on a national level? Decide what it is you want to do- then do it! Some advocates distribute brochures to hospitals and support groups. Some advocates write articles, blogs or communicate with the media to spotlight lung cancer stories. Some advocates support others, act as a support mentor, provide information, be at rallies and health fairs, and work to change legislation. Other advocates like to host community events, fundraising events and raise awareness though social media campaigns. There are various ways in which you can be an advocate. You don’t have to have previous experience; you just need to have the passion and the dedication. At LUNGevity we can help you, by providing ways in which you can make a difference, giving you ideas and access to information, webinars, training tools and notice of advocacy opportunities that become available. We can also help by referring you to resources and other organizations that can help you accomplish your advocacy goal outside of our mission. 5. Start NOW. You are an advocate the minute you decide to support, defend or champion for yourself, your loved one, and/or lung cancer. People with no experience, aside from their personal experiences with lung cancer, CAN make a difference immediately in their own lives and in the lives of others. Start now. Don’t wait. Those affected by lung cancer need you to advocate for them, and those that are no longer with us need you to be their voices. If you are interested in learning more about advocacy thru LUNGevity’s LinkUP advocacy initiative, visit our website at www.LUNGevity.org Where Did Everyone Go?
When people disappear (physically or emotionally) after a cancer diagnosis. I have experienced being someone with cancer and being someone who cared for someone with a terminal cancer diagnosis and neither side is a cakewalk. This weekend, at the LUNGevity HOPE Summit in Seattle, we talked a lot about survivorship and family relationships in the Caregivers session and I’ve decided that being the caregiver and managing those relationships can be stress-filled and sometimes heartbreaking. When my dad was diagnosed with terminal lung cancer, I had hoped that my large family would have rallied around him. Instead, some sent a get-well card now and then, made obligatory phone calls or sent along emails or news articles about whey grass juicers and Noni. What would have helped was some actual concern about how he was, how I was, and if we needed any help. Where were they for each chemotherapy treatment? Where were they when we were on the side of the road and dad was so sick that I had to run to the other side of the car to hold up his head? That happened more times than I could count. Where were they when his primary caregivers- my mom and myself- needed a break? A phone call allowing us to vent, a gift card for a massage, or meals, or an in person visit would have been compassionate and very welcomed. Being “too busy” to help out was not a valid excuse to use. If you want to help you find a way. I was a wife, a mom to a young son, a full time college student and worked full time along with managing my dad’s medical care daily. Because my mom was a limited English speaker, she needed me daily, physically and emotionally supporting them both. I didn’t sleep for about 11 months. Being too far away to help was not a valid excuse either. Phone calls, gift cards, a sympathetic note and words of support can always be sent via email. They weren’t. That was 12 years ago and I’ve gotten over that resentment- to some degree. I know after my experience who I can count on and who I can’t. Those that I can’t count on I’ve virtually cut out of my life. But that’s not always possible for some people to do. One of the caregivers talked about his frustration that siblings and family members were not helpful to his wife. They were nowhere to be found. Not only did they not help her thru her cancer experience, they continued to rely on her to care for her elderly parents and came to her for advice and financial issues- not once asking her about her condition. One patient talked about her recent 11-day stay in hospital. Her family, friends and neighbors had been great in asking her caregiver if they needed anything and how they could help her, but when she was finally released from the hospital she came home to rotten food in the fridge and a front lawn that had died from not being watered. Another caregiver talked about how his mother in law compared his wife’s terminal cancer to her chronic gastritis. She wasn’t any help to her or her family and never asked details about her cancer. One patient talked about how her husband had set up a chore list and meal train in hopes that her extended family and church family would pitch in. After the first two weeks, no one volunteered to help her family during their most difficult time. Have you experienced abandonment of family and friends after your cancer diagnosis? What did you do about it? Do you have advice for those who are going through this now? Traditionally “summer camp” is viewed as a carefree, fun and sometimes educational program for kids to take part in during their summer breaks. Lasting a few days to a few weeks, these programs can teach life skills, sportsmanship, and team work, build self-confidence and help form life-long friendships.
Many of us utilize summer camps to keep our children physically active and to keep them from being bored out of their minds during the summer. But did you know about the specialty camps available today to help kids who have been impacted by a cancer diagnosis in their family? One in three women and one in two men will be diagnosed with cancer in their lifetimes and cancer affects an entire family. Some of these camps are available at low or no cost and offer an environment of understanding and support for a child and family members who are experiencing tragic or difficult circumstances. A camp like this can offer a child a break from the reality of their current situation, a break from cancer or maybe for the first time be the one place where there are others that truly understand. If you have or know of a child impacted by a loved one’s cancer diagnosis, it’s worth it to check into the availability of camps in your area. I've posted some listings of camps below. If you know of others, please feel free to post the links in the comments section. Angel Foundation's Kid's Kamp, Minnesota http://www.mnangel.org/attend Facing Cancer Together, a program of Angel Foundation, offers a free camp for children ages five to 18 who have a parent with cancer. Facing Cancer Together offers education and support programs for the whole family throughout the year. Arizona Camp Sunrise and Sidekicks, Arizona http://www.azcampsunrise.org/ Established by the ACS, Arizona Camp Sunrise offers special programs for children who have or have had cancer and Sidekicks, programs for the siblings of children with cancer. Arizona Camp Sunrise offers weeklong, residential summer camps, day camps, weekend retreats, teen trips, and other year-round special events. Camp Kesem, throughout the United States http://campkesem.org/find-a-camp Organized by college students, Camp Kesem is a weeklong, sleep-away summer camp for children ages six to 13 with a parent who has or has had cancer. The camps are held on college campuses throughout the United States. Each of the camps is organized and operated by a group of student leaders. Camp Mak-A-Dream, Montana http://www.campdream.org/ Camp Mak-A-Dream is operated by Children's Oncology Camp Foundation. It is a medically supervised, cost-free camp for children (ages six to 13), teens (ages 14 to 18), and young adults (ages 19 to 25) with cancer. Camp Mak-A-Dream also offers a camp for siblings ages six to 17 who have a brother or sister with cancer and hosts retreats for adults with cancer each fall. Cancer Services of New Mexico's Family Cancer Retreats, New Mexico http://www.cancerservicesnm.org/programs/retreat.php Family Cancer Retreat is a free, three-day educational retreat for adults with cancer and their families. The event includes a combination of educational workshops and family activities. The retreat is held twice a year in Glorieta, New Mexico. Harmony Hill, Washington http://www.harmonyhill.org/personal-retreats Harmony Hill, located on the south shore of the Olympic Peninsula's Hood Canal, offers weekend, residential cancer retreats for people with cancer and their loved ones. The Hole in the Wall Gang, Connecticut http://www.holeinthewallgang.org/Page.aspx?pid=471 The Hole in the Wall Gang is a camp founded by Paul Newman in 1988 that offers summer programs, fall reunions, parent support programs, and other outreach programs. The Hole in the Wall Gang is one camp within the Association of Hole in the Wall Camps. Special Love, Inc., Virginia http://www.speciallove.org/ Special Love provides camps, support networks, and other unique experiences for children with cancer, their siblings, and families. Some business leaders and organizations are failing at social media and don’t even know it. It’s easy to live and work in a silo. It’s easy to attribute those one-time likes as a measure of your success, but don’t fool yourself. Social media is vast and fluid. While it’s forever changing, some things, common practices, still remain the same. While you may not hear or read complaints, it’s very easy for users to ignore, hide, unfriend or un-follow you.
Here are some tips on what you should and should not do. Don’t Lie. Some business leaders and organizations stretch the truth about various things. Don’t post something that isn’t 100% true. We will find out and then your credibility will be shot. Don’t Spam. I followed you because I was already a fan. One ad or self-promotion a week may be fine but don’t let that be ALL that you ever post or I will unfollow you or unlike you. If you put a personality to your page, add some great content and a bit of humor, I will share your stuff and you will get new fans. Don’t Steal. Don’t steal other people/organizations/brands stuff. Just don’t do it. Give credit where credit is due. Reposting other people’s stuff is fine as long as you give them credit for it but putting a post, photo or idea out there like you created or own it when you poached it is just stinky and people will remember that about you. Don’t Criticize. Don’t posts negative things about other groups, businesses or brands. All that does is make you look bad. In fact, just don’t post anything negative at all. Remember that everyone loves animals and unicorns. DO Post Quality Content. I realize the majority of your content will be about you or the brand, but your social media page should have a personality. You should share important things and humorous things and eye catching graphics and emotionally driven content too. Our lives are multifaceted and your page should be too. DO answer me. This is critical if you want to keep followers and fans. If I take the time to post a question or concern on your page, you need to take the time to answer me. Hire someone to do it if you have to, it’s called customer service. Turning off posts by others on your Facebook page doesn’t get you off the hook. If you see something posted about you on Twitter or if you get a private message, you need to answer or at least acknowledge your constituents. And finally, for those of you who have personal page accounts on Facebook to “relate” to real people, your fans, etc… start relating to them! I have a great example of an organization’s president who has about 2k people on his “personal” Facebook page. If you are one of those 2k people you may have felt quite special at one time. Then you took time out of your day to post some words of encouragement or congratulations on the promotion or new baby or maybe you posted a happy birthday and that ‘friend’ couldn’t be bothered to type a thank you or give you a simple thumbs-up. |
The CANCER Blog
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