A Look Back On “The Things I Wish I Were Told When I Was Diagnosed With Cancer” – PART ONE –


When You're First Diagnosed With Cancer
The Things I Wish I Knew

Prior Post: The Things I Wish I Were Told When I Was Diagnosed With Cancer

Recently, I revamped a prior Post, which essentially copied an Article that stands as an incredible “guide” for newly diagnosed cancer patients.

My Post is here: https://braincancerbabe.com/2020/08/26/the-things-i-wish-i-were-told-when-i-was-diagnosed-with-cancer-2/?preview=true&frame-nonce=a231a2007c

The original Article was published in 2012 by a writer, Jeff Tomczek, who was diagnosed at 27 with leukemia.

His original Article is here: https://www.huffpost.com/entry/cancer-advice_b_1628266

I’d highly suggest reading either Jeff’s Article or my recent Post before delving in here!


Looking Back on the Article’s Lessons, Guidance & Advice 6+ Years From My Initial Diagnosis And 5 Years “Cancer Free”

As I stated in my prior Post, I constantly return to Jeff Tomczek’s Article, especially when I’m introduced to newly diagnosed patients. I’ve forwarded it countless times. It also transcends cancer. I think these lessons even transcend illness.

Everyone can learn from this Article!

I wanted to add onto the original Post now that I’m officially close to 6.5 years post-diagnosis and “5 years cancer-free” after 2 bouts of brain cancer, specifically an initital Grade III anaplastic ependymoma in 2014 and a recurrence of the same tumor type in 2015.

In the grand scheme of life, 5 or 6 years is not THAT long of a time.

Yet, I’m literally going to write a book on all that I’ve been through in that relatively short time span, and it just keeps comin’. I’ve learned a whole LOT of lessons these past few years. Therefore, I’m breaking this Post into several parts.


Why It’s Important To Look Back

Despite how challenging it can be, we should all live in the present and not the past.

Accept that living in the present moment, with your present desires, is the best, the highest thing you can do.

— Deepak Chopra

However, I also believe it’s important to reflect back on our experiences to move forward.

Reflecting  looking back to move forward
REFLECTING: LOOKING BACK TO MOVE FORWARD

Thus, whether you’ve just been diagnosed, or you’re 5, 10, 15 years out from that initial diagnosis, you can always learn something new from Jeff’s Article.

Also, many of my subsequent Posts after I featured Jeff’s Article back in 2016 relate directly to the issues Jeff discusses. So, as I look back I am going to drop links to some of my other Posts.


Looking Back On These Crucial Lessons in 2020

5 Years “Cancer Free”

Lessons Guidance Advice
Lessons: Advice Help Support Tips Information Guidance

You will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.”

– Jeff Tomczek
On Relationships

I’ve written quite a bit about relationships on this Blog. Here are just a few of my past Posts on the topic:


When I’m asked, “What advice would you give to someone who is newly diagnosed with cancer?” one of my most common answers is, “People will surprise you in the of best ways, and some will surprise you in the worst of ways.”

I learned this the hard way!

Some people I believed would always be by my side disappeared or did things that were even more hurtful. Luckily, not many, but it happened.

Yet, complete strangers became some of my closest friends. Also, people who I never met in-person have sent gifts, cards, and demonstrated true acts of kindness expecting nothing in return.

In his Article, Jeff Tomczek definitely “hits the nail on the head” with his advice about relationships. In fact, it’s the first topic he discusses. I agree whole-heartedly with about 99% of his advice.

However, one thing I have to disagree with is Jeff’s statement about people’s varied reactions to your illness.

Jeff states, All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery.”


In my experience, No. Some reactions are not forgivable.

Perfect examples of this are discussed in my Posts:

Today, I Was Told To Die” https://braincancerbabe.com/2020/05/11/today-i-was-told-to-die

It’s All About Everyone Else” https://braincancerbabe.com/2020/05/31/its-all-about-everyone-else/

Relationships

Yes. Jeff is right. Living with hate and anger does not help your recovery.

I absolutely accept that people won’t always say or do the “right thing”. Most times there simply aren’t words to even express hearing your loved one has been diagnosed, needs yet another brain surgery, or suffered a recurrence. Some people feel helpless and don’t know what to do, or how to react. I get it.

However, abandoning someone at their worst moment(s) is just not acceptable.


FOR THOSE WHO DO NOT KNOW HOW TO REACT, OR WHAT TO DO FOR SOMEONE WHO IS NEWLY DIAGNOSED, IN TREATMENT OR SUFFERING FROM ANY DEBILITATING CONDITION, I OFFER THIS ADVICE:

One thing my dear angel who is now in heaven, Jaclyn Sabol Patton, (RIP, my girl) always used to say:

Don’t ask, “How can I help?” Just do something, anything to lend your support. Don’t put it on the sick person to tell you what they need.”

JAC 😇
What You Can Do To Support A Loved One

Send food. Give them a card. Write an email to let your loved one know you’re thinking of them. There’s tons of online shops that specifically create “care packages” for patients too. If they have a pet, offer to pay for a week of petcare. Offer to have their apartment/home cleaned. Donate to a charity in their name.

There’s an endless amount of things you can do to support a loved one in a crisis. Cancer and any serious illness is so personal. So, I understand if it’s hard to know exactly how to show your love and support.

Nevertheless, the ONE thing you should never do is ignore their challenges, situation and/or pain.


Furthermore, I’m in the camp that “Positivity helps you heal”. Not everyone is in that camp and that’s okay too! Again, this challenge/journey/battle/whatever term you choose to describe your situation is unique to each person.

While I do my utmost to be positive and stay grounded, I’ve learned that those of us fighting for our health and lives, must protect our hearts and our souls from toxic relationships. This is especially true when people use OUR disease as an excuse for THEIR horrendous behavior. It hurts. It’s hard. No doubt, you WILL experience this, as insane as it sounds. Yet, it is not a cliche.

People really do show their true colors when you’re ill.


One of My Own Lessons on Relationships

Cut-off Toxic Relationships

Even if it’s a family member, limit your interaction if someone is not doing all they can to support you! It can be a temporary “cut-off”, if necessary. There’s been times when I’ve even had to strictly limit my interaction with my own parents, and I’ve got amazing parents. Sure, they have their quirks, but don’t we all?

From Power of Positivity:  Toxic Relationships​
From Power of Positivity: Toxic Relationships

If there is any time to be “selfish”, or at least particularly protective of your mental health and heart, it is when you’re battling cancer or a serous illness! This includes the time period when you continue struggling with cancer’s seemingly endless side effects! Our pain and our fight extend well beyond treatment!

I may be 5 years “cancer free”, but I just had my 8th surgery on August 24, 2020! So, it’s not as if cancer is 5 years in my past. Hence the quotation marks because I have never felt “free” from cancer.

And trust! I have cut out some severely toxic people from my life. Making the decision to end those relationships was a struggle in and of itself, but I needed to take drastic action for my own well-being. When I finally “cut the cord” it was like a huge weight lifted from my shoulders. You do NOT need negativity, abandonment and toxic drama. You’ve got enough on your plate!


Another One of My Lessons on Relationships

Find Your Tribe

Another key piece of advice I constantly discuss is the value of “finding your tribe”.

You could have 50 dear friends who love you with all their heart. They can empathize with your situation. They can support you. Further, you can cry together. You can find relief in their hugs. Yet, unless they’ve “been in the trenches” they will never fully understand like your fellow cancer survivors/thrivers. This is not a flaw or a criticism. It’s just the truth.

I have a fantastic support network of fellow cancer thrivers, brain tumor survivors and caregivers . They are my tribe. No matter what I’m going through, they just get it. Many are pictured here, but not all! I’m extremely fortunate to have made such incredible connections despite having made them because of cancer.

Members of your tribe have been there. They’ve had the same feelings, gone through the same challenges and they help you feel “less crazy”. No matter how crazed your thoughts may seem to someone who hasn’t gone through cancer. Believe me. Your tribe will understand because they’ve had the exact same crazed thoughts!


A perfect example of this is that before meeting other cancer patients, I truly believed I was turning into a hypochondriac.

Every headache I got, I was convinced the tumor was back. Every twitch I felt on my left side, well it had to be another seizure coming. Thank the Lord for my oncologist’s patience. She returned every call when I’d be in this state of pure panic!

Only upon meeting the initial members of my cancer tribe did I learn this was completely “normal” or at least typical of the cancer experience.


Lesson on relationships and your cancer tribe
YOU’RE NOT CRAZY – YOU HAD CANCER

Another very typical experience your tribe can guide you through is “scanxiety”. I’ve written a lot about this throughout various Posts.

Here is the Post that described my first scanxiety experience:

http://braincancerbabe.com/2016/06/12/vacation-period-seriously/


Your Energy Level, Fatigue & Listening to Your Body

if you get tired, learn to rest: a hard lesson for me, personally, after my diagnosis
I LOVE BANSKY’S WORK! I WAS FORTUNATE ENOUGH TO VISIT THE MOCO IN AMSTERDAM IN 2018 TO SEE AN ENTIRE BANKSY EXHIBIT!
Loss of Your Mobility, Capabilities and Fitness-Level

Prior to cancer, I did any fitness class you can name, except running. Running was one exercise I always hated, so I never did it anyway. Nevertheless, before “The Big C” I worked out 4-5 times a week while working as a litigation attorney in New York City. Even after my first two surgeries, I didn’t have the serious mobility issues I live with now. So, I was in fantastic shape by my 3rd surgery – the “Big Kahuna”. That was the 12+ hour bad boy! You can read ALL about that here: https://braincancerbabe.com/2016/05/19/so-freddy-krueger-and-i-walk-into-a-bar/

That surgery was in May 2016. After that, the mobility, balance, and strength issues on my left side arose. Yet, because I don’t feel any pain, to this day I sometimes wake up and think I can simply stroll out of bed. Ah, No.


Grieving the “former physical “you”

It has been one of the hardest lessons to learn, and it’s true grief. Fitness and working-out was my stress relief. I did hot yoga twice a week. I can barely do “chair yoga” now. Hell, I tried surfing for the 1st time ever in Costa Rica in March 2016. I rode a wave on my 1st try! Then, a month later I was in surgery for more than half a day!

Can I still work-out? Yes, in modified ways. So for that, I am grateful.

Yet, it’s that loss of ALL the things I could do before cancer and even prior to that massive 3rd surgery that eats at me. I was a scuba diver, which I can never do again because of my epilepsy. Yet, I had zero fear of diving right next to sharks in Thailand.

In Costa Rica, I went on a massive zipline that required us to hike who knows how high to get to the various zip line areas.

Two months after my 2nd surgery, I went white-water kayaking in Oregon with the non-profit First Descents.

I was a snowboarder, admittedly not a great one. Yet, I loved it. I rode black diamonds in Quebec, and because I was out of practice, easier trails in New York, Vermont, Utah and Colorado.

Fatigue

My body needs to move! However, FATIGUE IS REAL, AND COMES AND GOES IN WAVES! One day, I’ll feel so energized and accomplish everything on my “To Do” list. Yet, the next day, I’ll need to sleep til noon. I’ll barely accomplish anything.

It’s VERY DIFFICULT for others to understand this ebb and flow of energy levels. Even my husband doesn’t really understand it, and he sees me on a daily basis. Hell, I don’t understand it fully myself.


My Lesson: Listen To Your Body!

What I tell people is: “Listen to your body. If it needs rest, don’t feel guilty or bad about it.”

Jeff’s words are so very true: “you will be different. You will never have the same sense of self.“

You will indeed try to manage all the things you were doing before getting sick. Yet, it’s practically impossible. When that fatigue hits, you’ve just gotta go with it! Your body, mind and inner-self are ALL trying to fight this disease. So, unfortunately if one part is too burned-out, all the other parts will be as well. You’ll need that rest/relaxation/solace to balance yourself again.

THIS JUST SAYS IT ALL

From Litigation Attorney to Disability

I grieve for the bad @ss lawyer that walked into a courtroom full of men in a wave of indistinguishable navy and grey in my 4-inch heels and expensive suits, arguing before judges who tried to belittle me and against adversaries who thought I was fresh out of law school. Thus, they thought they could take advantage.

Indeed, I was in a deposition not long before I got sick with two middle-aged, male attorneys, who constantly tried interrupting my questioning. I let a few things slide. You pick your battles, ya know. However, after about the 3rd time, I said:

Off the record!”

The court reporter stopped typing away. I put my pen down (as I always took my own notes) and said:

Listen guys, this is not my first rodeo. I’m going to ask the questions I want in the manner I want. You may place your objection to the form on the record, but you’re not going to stop me from asking what I need to ask.


Would I still do that today? Absolutely! However, my body simply cannot handle any stress, or I go into a seizure. I do not have the energy level to sit through 7 or 8 hour depositions.

I cannot physically carry the immense files I would haul around from my office to court.

It’s not often I’ll lose my words, but it does happen. So, how could I stand in front of a courtroom and argue a Motion before a judge with 35 cases after mine, when at times, I go blank or get stuck because I’m trying to find a word? It can take a good full 30 seconds to a minute to access it.

The answer simply is: I can’t.

Therefore, I am retired from law and on permanent disability. I will likely never return to work, something that I could never ever have imagined at 40 years old. So, I find volunteer opportunities to keep me busy and not like a sloth on the couch eating BonBons all day.

I graduated from law school, passed 2 bar exams and by this point in my career I’d likely be a partner or “ Of Counsel” making at least triple of what I receive from my private disability. That’s not an “easy pill to swallow”, but my brain and my body have just gone through too too much. Thus, however long I remain on this Earth I will always struggle with my health.

It is not fair. It is indeed a continuous struggle. Yet, this is the life I have been given. So, I better make the damn best out of it!

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