It was a natural thing for me to do. I Had always wanted Who beens one to make people feel good, and not after-Being ble to return to my career once my cancer treatment Was done, advocacy Seemed like a perfect thing to do with my time and energy.It started by sharing my story with others.
Then I Decided That Would Be a blog the best way to reach many more people, and in partnering with the Mesothelioma Cancer Alliance, It has done Just That. I have-been ble to reach literally Thousands of people through working with em and a vast network of bloggers.I have Learned so much in the last 10 years, so here are my top 5 pieces of advice for Those Who want to Become an advocate.
1. Educate yourself.Living through mesothelioma surgery and treatment Was not enough. It's a good start, aim it is a very small share of a bigger picture.
I am Constantly try trying to educate myself on the newest therapies, the doctors Who treat this disease, and Where They are located.In addition, I go to the Symposia on malignant mesothelioma put on by the Mesothelioma Applied Research Foundation, Because They Have The Most up to date information on the disease.
I volunteer with The Asbestos Disease Awareness Organization to keep my finger on the pulse of the Laws Affecting asbestos and Its victims.You can never be too educated about the thing you want to advocate for.
2. Share Your Story.There is incredible power in sharing your personal survival story with others.
People want to hear about Those Who Fought and-have done well and beat the odds.Use your voice, whether it be through a personal blog, or simply a CaringBridge page.
People love a good story.
Even if you-have lost a loved one, Advocating on Their Behalf, In Their memory, and sharing personal Their story always inspired others.I can not help think of my friend goal Bruce, Who Passed Away as a result of mesothelioma goal Lived a really amazing life well beyond His initial prognosis.
He Continually inspired Thousands With His gift and love of music.
His legacy of music will live on through all the lives he's touched.
The story of Bruce, and the de son love life, Beth Anne, is One That will stay with me forever.Heather and friend BruceHeather and friend Kenny Kane
3. Get Involved.Getting Involved in the cancer community Was one of the best things I've ever done.
There is no one like Who Understands the struggle Reviews another cancer patient.I do not just volunteer with strictly mesothelioma groups, ALTHOUGH That is my main area of focus.
I have gotten Involved in a pair of --other platforms as well.
Stupid Cancer, is for young cancer patients under the age of 40, and since I Was Diagnosed before I Was 40, I got to slip in.
Their mantra is "Get Busy Living," and They Have monthly meet-ups all over the country.
Through my local Twin Cities chapter, I've met Some amazing warriors and cancer-have Learned so much about --other kinds of cancer.
It goes back to my first bullet point about Educating yourself.Another fantastic organization is Imerman Angels.
They Provide free one-on-one cancer supportive for cancer fighters, survivors and Their caregivers.
I've had the wonderful opportunity to mentor people all over the country, and-have-been reliable to serve as a conduit for 'em to get media from online and phone in groups They Would Otherwise not be aware of.Because of the treatment I Went through, I'm reliable to mentor not only meso patients with --other goal Those kinds of lung cancer.
Through my mentoring, friendships are beautiful and immediate FORMED and the shared bond is single so.You are a life raft in a sea of uncertainty and can offer a lifeline They can not get from family.
It is much needed by all patients.
Your individual experience can help a myriad of celebrities, and by Utilizing resources, getting Involved is the best way to be an advocate.
4. One size DOES NOT fit all.Cancer is not one disease. It is Many different cell type and Many different diseases.
Mesothelioma alone HAS hand three kinds (pleural, peritoneal and pericardial), along with three cell type (epithelial, sarcomatoid, and biphasic), all of qui far different responds to treatment.The treatment and sucker I Had arent the right solutions for everyone.
I Learned this early on.
My friend Doug and I were Diagnosed at the time Sami, HAD surgery days apart, both, HAVING Review: had an extra pleural pneumonectomy.
Purpose That Is Where the similarity ends.
He Went on to do six rounds of chemo, I only HAD oven.
I Had IMRT radiation, He Had none.
It is not my job as an advocate to tell _him_ he is doing things right or wrong, my job is to mount _him_ and his medical team's decisions.I'm not medically trained and ALTHOUGH I'm very aware of All That is offert I would never be so bold as to offer medical advice.
Mary Hesdorffer who is the director of the Meso Foundation is someone who I trust With That area.
She is not only the director, the medical liaison purpose, and is a practicing licensed Nurse Practitioner, working at the National Institute of Health as well.
She has sound medical knowledge and a vast network of doctors from qui to draw on Their experience, and I Often Refer people to her, Knowing it is out of my area of expertise.
Heather and fellow advocatesAnnamarie Kearns, Linda Reinstein, Heather Von St. James, Julie Gundlsch, and Marilyn Amento at a recent Senate BriefingMy job as an advocate is not to make you second guess your treatment options or choices.
It is significant to put my own experience on the back burner, and to help you make the right choices for you are That.
I May Not Agree With A strict vegan diet and using marijuana to help with side effects, purpose if it is helping you and it is the path you choose, Then I will mount you.I will do my best to find resources and information so you and make Informed choices.
I will not ever disparage your choice of doctors, medical centers gold. If you ask for suggestions, I will happily give you advice, goal I would never dream of forcing my choices on you.
That is not advocacy - that is Being a bully.I've seen it happening Too Often That People Think Their doctor, or That Their Way of Treating the disease is the only way to do it.
It's simply not true. ALTHOUGH surgery is still one of the best ways to treat mesothelioma, it is just not the right answer for every patient, and Knowing That is key.
5. Take Time for Yourself.Being an advocate is not easy.
You are dealing with Many serious health issues, and it is really easy to take 'em we're your own burden.
It is hard to not feel for People When They are HAVING complications and not responding to treatment. Or When there is a reoccurrence after-A Few years, it is like it happened to you.It's okay to get upset, and it's ok to cry. It's hard not to-have everything You Went through come back and you yourself-have anxiety.
That's why it is vital That you care for yourself and set boundaries Some.The thing is, Being an advocate is not a thing 9-5. People need you When They need you. Nights, evening, weekends ...
You need to make sour That You do not give you everything-have To Those you help.What I have found though is by Giving That, I am Fulfilled.
By helping others, Their calming fears, and Encouraging Them, I am reliably to get out of my own head and concentrate on others.
I have Realized That by Being the calm in the storm for 'em, I Become stronger.
Do not get me wrong, I'm not all wine and roses about it.
I have-been Diagnosed with PTSD, and anxiety-have pieces of That I deal with, I aim aussi Took steps to figure it out how best to deal with the situation so I Could help others find Themselves If They Sami in the situation.I found a great therapist Who has helped me Identify the triggers anxiety and HAD Taught me how deal with 'em.
This knowledge Was incredibly empowering and has-been a lifesaver for me.
It is my share of self care.
I saw her weekly for awhile, and now just check in every 6-8 weeks so I can stay on track.I aussi make sour I sleep well, euphemism have sex with loved ones Who fill up my tank and find joy in every single day.
I always remember Where My strength comes from, and for me? It's God. A power larger than myself, someone stronger than me That I can put all my trust, hopes, and love in.
He keeps me filled.It's not always easy, and there are days When That I want to just throw in the towel.
Purpose Then someone tells me how much my Meant to help 'em and it Brings me back to center.
After all, Being an advocate is not about me - it's about helping others. And That is the best thing to do I'm reliable.Being an advocate is an incredibly rewarding life.
To me, it is a calling, a vocation, something I am Meant to do.
I Was Given a second chance is this life, and I do not want to waste it.
If you feel led to the Sami path, I hope you take my Reviews some of suggestions to heart, and I hope you find it as fulfilling as I do....
