Helpful Resources and Information I Wish I Had When First Diagnosed

I intend to update this post constantly, as I am always coming across new and helpful resources.  I believe they can be utilized regardless of whether you are newly diagnosed, or a long-time member of the cancer club. 

This is in no way an exhaustive list, but these are some valuable websites and organizations I personally connected to.  I also don’t claim to be any type of expert!  You have to do what is right for you.  So, I have included some of my personal advice based on my experiences and those I’ve met along the way.  

One invaluable piece of advice I have heard over and over again, as well as advice I’ve given:  DO NOT GOOGLE!  Don’t get me wrong – it’s hard not to in our digital age.   Try your best to avoid the overwhelming urge to search out your symptoms, diagnosis, etc. on chats or less-than-established websites.  I have heard horror stories of patients googling one symptom, or one treatment option, and becoming convinced they will die in the matter of months.  I’ve also heard countless patients tell me that they entered an online chat on some random site only to feel helpless and more frightened about their diagnosis and/or prognosis.

On the flip side of that though, I have met a number of people, who did their own research on their disease and found cutting-edge treatment options.  That led to numerous conversations with their doctors and in some cases, changing doctors/hospitals after weighing all the options.  Again, do what is right for you.    

Overall though, I’d recommend focusing on sites such as:  American Cancer Society (cancer.org); National Cancer Institute (cancer.gov); Association of Cancer Online Resources (acor.org); and, the Mayo Clinic (MayoClinic.com).  They are the experts – not us.

For brain cancer-related sites, I rely on the National Brain Tumor Society (braintumor.org).  Disclaimer: I am heavily involved in NBTS, so I am admittedly biased.  Some other brain tumor organizations people have found helpful are:  American Brain Tumor Association (abta.org/) and Voices Against Brain Cancer (voicesagainstbraincancer.org/). 

I also found my hospital’s website, as well as their social workers, key resources.  Again, I am extremely biased towards my hospital (I wouldn’t go anywhere else), so I won’t include their specific link.  Although, despite how incredible my doctors and hospital are, I found that I had to be the one to reach out for these resources.  So, be proactive.  Seek out social workers.  Ask them for information and helpful sites, organizations, publications…  Be your own advocate.  It’s incredibly challenging, especially early on in your diagnosis.  Don’t you have enough to worry about?  I strongly believe it benefits in the end though.

I have mixed feelings about support groups.  They work for some people.  They don’t work for others.  My advice: Ask questions.  Find out as many details as you can about the group(s).  Weigh the options.  Are you open, or ready, to seek support from other patients/survivors?  For me, I was frightened to hear other people’s stories.  What if it made me feel even worse about this whole roller coaster, and more specifically, scare the hell out of me?  Would there be people there at the end of their battle, truly facing the worst, i.e. dying?  In the end though, the support group I joined helped me feel less crazy (Like, wow, other people have these crazy thoughts too?) and I connected with some really incredible people.  Specifically, I joined a group through Cancer Care (cancercare.org), and found them to be a good fit for me personally. 

If you are a writer, or just someone who expresses themselves better through writing (I am definitely one of those people), Cancer Care provides a fantastic program, Healing With Words.  They describe it as “an online therapeutic writing group… The group will be a space to respond to writing prompts, share work, and participate in discussion surrounding the writing process itself.”  I absolutely loved participating in this group and many of the articles and pieces I included under this category were provided by the social worker moderator.

Additionally, one particular organization I cannot say enough amazing things about is First Descents (firstdescents.org/).  I really don’t even know how to put into words what First Descents gave to me.  So, I’ll let their site best summarize what they do, in the technical sense.

“First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same….Each program is limited to 15 participants, ensuring individualized care, medical attention and an intimate experience with fellow survivors. First Descents programs are available to young adults with cancer regardless of their financial means. All meals, accommodations and program activities are provided free of charge, including travel scholarships, when needed.”

“At First Descents, we define our lives by the depth of our friendships, the adventures we live, and the moments of laughter, peace, fear, and humility we experience. We remember the important things; the defining things, like brilliant sunsets, big rapids, glassy waves, and endless rock faces. We’re fueled by the feeling of standing up on a surfboard for the first time, paddling through whitewater, and topping out on a climb, always surrounded by friends who feel more like family. These are the moments that define First Descents and the paradigms our programs seek.”      

Through First Descents, I spent one week with 9 other cancer survivors kayaking through the whitewater rapids of Oregon’s Rouge River.  These 9 people are now my FD family, and I don’t say that lightly.  I do not know where I would be without them, and without my FD experience.  The program challenged me physically, emotionally and mentally.  I absolutely came out of that week a better and stronger person. 

As a side note, I almost did not make my trip.  I was scheduled for my program in mid-August.  I learned of my recurrence in June, and underwent my 2nd brain surgery on June 30th.  I then began IV Avastin infusions and one week of intense, high-dose radiation.  Through every single step of the process, I feared I would have to cancel my trip.  However, through my oncologist’s tireless fight, all of my treatment was scheduled around my FD program, and I was thankfully approved to participate.  My FD experience was truly life-changing, and I will forever love my doctors for giving me that gift. 

On another side note, I will probably dedicate a number of posts to FD and what I gained from my experience. 

Basically, if you have the opportunity, apply for an FD program, like now!!!

                  

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