Helpful Resources and Information I Wish I Had When First Diagnosed and A Wee Bit of Advice

resources

I intend to update this Post as much as possible, as I am always coming across new and helpful resources.

I believe most, if not all of these resources can be utilized regardless of whether you are:

  • Newly diagnosed;
  • A long-time member of the “cancer club”; and/or
  • A caregiver.

JUST MY PERSONAL ADVICE

Any advice in this Post is merely based upon my own experience and those of whom I’ve met along the way on the roller coaster of my “Cancer Chaos”.

It is in no way meant to be taken as medical advice, or substitute any medical advice given by a medical professional

initial resources
RESOURCES

INITIAL KEY RESOURCES

After my diagnosis in 2014, my initial key resources were:

  • my hospitals’ website, and
  • the inpatient social worker

Initial Piece of Advice:

Thus, my initial piece of advice for any patient is to seek out a social worker, or even a mental health expert at your hospital.

* Your mental health is just as important as your physical health*

Where I treat, each department has both inpatient and outpatient social workers, as well as an entire Counseling Center.

They’re some of the greatest resource I’ve used throughout this experience.


When or If you speak to these professionals, ask them for:

  • information and helpful websites;
  • non-profit organizations that provide whatever service you may be interested in finding, such as information on your disease, advocacy groups, financial and/or career advice;
  • key publications, whether they’re medical journals, magazines or books;
  • programs the hospital offers for patients (Example: One of my treating hospitals offers writing, art and recreational programs just for cancer patients, whether in-treatment or post-treatment)

Prior Posts on Mental Health

Opening Up About Depression and Mental Health & I’m Not Myself(Opens in a new browser tab)


The Value of a Good Social Worker: MY PERSONAL ANECDOTE

At my initial treating hospital, the neurology social worker was truly a godsend! I believe I first spoke with him after my first surgery. Then, things were pretty normal, all things considering. Thus, I didn’t feel the need to reach out for help.

Coming to the Rescue

However, he really came to the rescue after my second, third and forth surgeries. He would visit my husband and I after every surgery and during every hospital admission.

Pain Medication

Numerous times, he was able to get the “team” to check my pain levels when they were out of control.

In response to my complaints to the medical staff, all I would get was, “You cannot have any more pain meds“! Yet, once my social worker stepped-in, I got those meds. Magic!

Getting Discharged

He assisted with getting me discharged quicker (or as quickly as you can EVER be discharged).

In one instance, the “team” was fighting me on going home with a prescription for a med they had actually prescribed while I was admitted. It helped me so much. My nurses and actual doctors felt it was a good addition to my “cocktail of meds”. Yet, the resident team refused to write the script.

Of course, once my superhero social worker got involved, they agreed to do it.

Typical, the hospital pharmacy took hours to fill the damn prescription. I was told that morning I was being discharged. When the social worker was leaving for the day he literally came into my room saying, “You’re STILL here! Oh, this is just ridiculous!” I have no idea how he did it. Yet, I was out of there in probably less than an hour later.

AN ASIDE: Being a Patient, Means Having to Learn to be “Patient” – most times, You really have no other choice

One in-patient hospital hour is like 10 minutes in the real world – in other words, EVERYTHING takes soooo long to accomplish when you’re in-patient, so if you get something done in an hour, it’s like getting it accomplished in 10 minutes in any other place the “real world”.

Couples Counseling

That social worker even served as the “male” presence during our couples’ counseling sessions. Our therapist was female, so it helped my husband having another man there.

My hero social worker is still truly missed even though it has now been years since he left the hospital to move back home out West.


You Must Be Your Own Advocate (IN FINDING RESOURCES)

searching for resources
SEARCHING FOR RESOURCES

Despite how incredible my doctors and hospitals are, I had to be the one to reach out and find resources on my own. I had to be my own advocate.

Most times patients and caregivers must be proactive in either asking or finding supportive resources.

It’s incredibly challenging, I know, especially early on in your diagnosis. Don’t you have enough to worry about?

However, it will absolutely benefit you in the end.

Quick Example:

My hospitals have patient-to-patient volunteers that you can speak with regardless whether you are inpatient or outpatient. I only learned about the program at my main hospital only after I was nearing my 5-year “cancer free” mark.

In those initial years after my diagnosis, it WOULD HAVE REALLY HELPED to talk to a patient survivor!!

Yet, I knew nothing about the program.

Further, all of my hospitals host programs like panel discussions, group exercise programs, and recreational activities.

However, again, most times it’s the patient who has to research what activities and programs are available.


DO NOT GO DOWN THE “GOOGLE WORMHOLE”!

The “Google Wormhole& the Problems That Can Arise

I know it’s SO hard not to Google something so important, in our digital age.

My advice: Try your best to avoid the overwhelming urge to seek out information on your symptoms, diagnosis, prognosis, etc. on a less than established website or through online chat groups.

Please do not stay-up until 4:00 a.m. googling, for example:”does breast cancer kill?” or “will I die if I have leukemia?”! This would definitely constitute falling down into the depths of the “Google Wormhole“. Ya get me?

WHENGOOGLING” HURTS

I have heard horror stories of patients googling their diagnosis, one symptom, or treatment side effect. That led them to other sites, which contained even worse things. Then, they become convinced they’d die within months.

google.com

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.

Please know there is an incredible amount of misinformation online.
There is so much misinformation about everything online these days. Cancer is not immune to this Pun Intended.

Furthermore, all of our experiences are unique. Just because I have brain cancer does not mean that my experience is the same as any other brain cancer patient. In fact, my experience has been UNLIKE practically any other patient my numerous doctors have seen! That’a whole other story… hence, this Blog.


WHEN “GOOGLING” ACTUALLY HELPS

On the flip side, I have met a number of people who researched their disease and found cutting-edge treatment options, which led to numerous conversations with their doctors. Even in some cases, after weighing all the options they changed doctors and/or hospitals.

In fact, that is how I found my current neurosurgeon. However, I relied upon hospital websites; I read a few blurbs on various medical journals; and the National Brain Tumor Society. Thus, legitimate websites.


Essentially, my advice is if you do seek out information online:
  • utilize legitimate, reputable websites
  • don’t scare yourself into a panic attack when looking at information online
  • discuss what you find with your doctors; they are the experts – not us! (I say that with the caveat that they are not ALWAYS right too);
  • ask as many questions of them until you’re satisfied with the answer;
  • if you believe you may want a 2nd opinion, get one; get 3 or 4 if you think it’s important enough. It was for me!

AND THE MOST BASIC ADVICE…

Do what is right for you!



TO JOIN A SUPPORT GROUP OR TO NOT JOIN A SUPPORT GROUP?

Support groups, as a resource
JOINING A SUPPORT GROUP: THAT IS THE QUESTION

I have always had mixed feelings about support groups.

They work for some people. They don’t work for others.

Personally, I was frightened to hear other people’s stories. What if it made me feel even worse about this whole roller coaster?

Would there be people there at the end of their battle, truly facing the worst, i.e. dying? Could I handle listening to nightmarish treatment details, or their side effects? Basically, would it scare the hell out of me?

On the other hand, my doctors suggested at least trying a group. It could really help to connect with people riding the same roller coaster. I agree, personally with that advice.

Try it out. If you hate it, maybe try another. Or, maybe realize it’s just not for you.


Personally, I Benefited From Support Groups

After considering my “pros” vs. “cons” I decided to try an in-person young adult posttreatment support group.

I joined a group hosted by a great resource CancerCare:

CancerCare is an incredible resource
CANCERCARE

http://cancercare.org

The group helped me feel less crazy, less isolated, “Like, wow, other people have these crazy thoughts too?“.

Plus, I connected with some really incredible, strong and resilient people. Most, if not all of us are still in touch years later.


My Advice on Support Groups:

  • Ask questions of whoever hosts the group, i.e. the social worker who likely will run the group, or the staff members of the organization.
  • 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?
  • Are you open, or ready, to hear other patients/survivors speak in-depth about their whole, raw cancer chaos?
Support group
SUPPORT GROUPS

DO NOT EVER SUFFER IN SILENCE

Trust me – no matter how “crazy” you think you’re being or feeling, there’s about 1,000 other patients feeling the same way and have convinced themselves they’re “crazy” too.

If are not a person who would be comfortable in a group setting, ensure you take care of your mental and emotional health. Whether you do so by simply talking to your treating doctors, a social worker or a mental health professional. DO NOT SUFFER IN SILENCE! There’s at least one resource out there that will fit your needs.

If you are a writer, or just someone who expresses themselves better through writing (I am definitely one of those people), there are even writing groups as well.

Cancer Care provided a fantastic program, Healing With Words. They described 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 some of the articles and pieces on the Blog were provided by the social worker moderator.

However, there is an active organization Lacuna Loft https://lacunaloft.org that focuses on writing.


GENERAL RESOURCES

This is in no way an exhaustive list,of websites and resources online and in-person:

YOUNG ADULTS


BRAIN CANCER/BRAIN TUMOR-RELATED RESOURCES

BRAIN cancer resources
Our Poor lil Brains

For brain cancer/tumor-related sites, I rely on the two largest in the US that I am aware of:

Disclaimer: I am heavily involved in this organization

  • American Brain Tumor Association (abta.org/)

Disclaimer: I have been involved with this organization as well. Volunteering has its perks! Yes. That is Maria Menudos. And, Yes, she is THAT beautiful! And, Yes, she is THAT truly sweet of a person!

Additionally, there’s several more, like:

Voices Against Brain Cancer (http://www.voicesagainstbraincancer.org)

Cancer Type

There are many organizations dedicated to the specific tumor/cancer type. Here are just a few examples.

Ependymoma

CERN FOUNDATION (https://www.cern-foundation.org)

GBM (glioblastoma)

StachStrong (https://www.stachestrong.org)

Our Brain Bank (https://ourbrainbank.org/why/)

ACTIVITY-RELATED RESOURCES

Activity-related resources
Whitewater Kayaking with First Descents


FirstDescents (firstdescents.org/). I really don’t even know how to put into words what First Descents gave to me. They provide survivors and patients with access to camps across the country to whitewater kayaking; mountain climbing; ice climbing, etc.

Project Koru(https://www.projectkoru.org/camp-koru). This organization provides Surf and/or snow adventure camps

Epic Experience. (https://www.epicexperience.org) Based In Colorado, this not-for-profit hosts camps for cancer patients and survivors to participate in activities, such as whitewater adventures in the summer and cross-country skiing in the winter.


MY PERSONAL EXPERIENCE WITH FIRST DESCENTS

“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.”

http://firstdescents.org/

“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.  My program was scheduled for mid-August 2015. 

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. 


                  

3 thoughts on “Helpful Resources and Information I Wish I Had When First Diagnosed and A Wee Bit of Advice

Leave a Reply