Daily Prompt – The Companion I Never Asked For & Never Wanted

“I don’t want to belong to any club that would accept me as one of its members.”  Groucho Marx

In April 2014, I gained a companion I never asked for and certainly never wanted.  I did not want to be a member of this companion’s club.  Yet, I had no choice.  This club accepted me despite all of my fear and loathing for it.  Unfortunately, this companion was brain cancer and I gained a permanent membership to the Big “C” Club.

My cancer companion will remain a constant part of my life, even if I remain “cancer free.”  I have a name for my companion – Chester, Chester the Brain Molester.  For ease, I’ll just call him Chester.

I did hate Chester.  He changed my life forever.  He turned my world upside down.  He infected me.  He took away so much, not just from me, but from everyone who loves and cares for me.  I will never be the same person I was before Chester came around.

Yet, Chester will always be my companion, whether I like it or not.  So, I’ll just have to live with him.  I’ll have to accept him.

Hating Chester truely a waste of my time and valuable energy.  Resentment and anger towards him will only hurt me.  I will just have to bury Chester deep down inside, filling my life with love and inner peace.

So, yes.  I am forever a member of the Big “C’ Club.  I’ll never know why that Club chose me as one of its thousands upon thousands of members.  I’ll never know why Chester needed yet another companion.  Yet, I am at peace with it now.  My strength, my resilience, the love that surrounds me will forever and always be so much more powerful than Chester.

https://dailypost.wordpress.com/prompts/companion/

My First “Tuesday Trickles” Challenge – Inner Peace

I just found a wonderful blog,  https://acookingpotandtwistedtales.com/join-the-challenge/ that presents a “Tuesday Trickles” Challenge.  Every Tuesday, Jacqueline Oby-Ikochacan opens her blog up to other writers to “share your very short snippets of positive, inspiring, motivating, health, spiritual, writing advice, clips, posts etc.”  I love this idea!

Today is my first “Tuesday Trickles” Challenge.

I woke up this morning reading an article from Deepak Chopra entitled “4 Ways to Create and Maintain Inner Peace.”  All of the 4 lessons deeply spoke to me, but the last lesson particularly inspired me today.  Deepak teaches that we should expand our experience of peace every day.  We need to stop wasting valuable energy on anger, resentment, insecurity and “baggage” created by our own ego.  Instead, use that energy for love, inner growth, creativity, and so forth.

While these words and ideas may not be my own, I am going to apply them today and hopefully going forward, every day.

I will go out into the world and fully embrace my inner self, my inner peace.  I truly do NOT have the energy for anger or negativity.  My inner peace will shine and by sending out that positive energy, it will be felt by others.  Not only will I benefit from this, but others will as well.

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Thank you, Jacqueline, for this Challenge.  I hope to participate in many more.

https://acookingpotandtwistedtales.com/2016/06/21/tuesday-trickles-my-thinking-corner-27/comment-page-1/#comment-34792

I Did It! I Made It Onto a Podcast!

THE NEWS

First – the big news.

I did it!  I made it onto a podcast!  For anyone who would like to listen (I would LOVE anyone to listen) the link is here:

http://croydonradio.com/podcast/show.php?HistoryID=215b2eb5-886d-fde2-1a8a-773bce29f2ba

My segment begins just around 14 minutes in.

HOW I MADE IT ONTO MY FIRST PODCAST

It took so much for me to sit down and create this blog.  I was so self-conscious and intimidated by the idea of opening myself up like this.  Still to this day, a few months since I began the blog, very few of my friends and family know about it.

I’ve spoken publicly many times about my story and this “cancer chaos.”  However, there is just something that feels so different about putting it all out there on the worldwide web, for absolutely anyone to read, anyone to find.

I recently listened to a video by Gabby Bernstein (if you don’t know her, you need to!  http://gabbybernstein.com/.  One of her particular messages is that it is our responsibility to share our own empowering message – to share your story.  Along with that, she also teaches not to compare ourselves in telling that story – there are more people in need than those who are serving that need.  In other words, even if there are 300 people out there with a similar story, there’s so many more people in need of hearing those stories.  Plus, your story is your own!  It is different from every single one of those 300 other people’s stories.

So, with that motivation, I decided to put myself out there just a little bit more, beyond this blog.

Through Twitter, which I also joined at the same time as I began this blog, I found an incredible woman, Claire Bullimore.  Claire is a fellow brain tumor survivor.  She is the founder of Aunty M Brain Tumours, a radio presenter on Croydon Radio (online) and the host of a show dedicated to people affected by brain tumours, called the Aunty M Brain Tumours Talk show.  As Claire says on her website, her show is there “to give a voice to brain tumour sufferers, survivors, family or friends.”  AND, this was key – her website said that she interviews “anyone who wants to have a voice or tell their story.”

So, fate/the cosmos/what have you was clearly sending me a message.  Tell Your Story!!

All it took was a simple email to Claire and just a few days later, we were setting up an interview for her podcast.  It was such an amazing experience and I hope that anyone reading here will listen to my podcast, and all of Claire’s past and future podcasts.

Thank you, Claire!  You will always be my first podcast!

Claire’s website is: http://www.auntymbraintumours.co.uk/ and specifically, information about her talk show is here: http://www.auntymbraintumours.co.uk/aunty-m-brain-tumours-talk-show/

Her Twitter handle is:

Her blog can also be found at https://braintumoursupportauntym.wordpress.com/

Oh and did I mention, she’s an author too!  “A Brain Tumour’s Travel Tale” by Claire Bullimore.

Daily Promt – “Keep Your Heart As Open As The Sky”

How difficult, sometimes terrifying, is it to open up your true self to another?  To put yourself out there in the most deeply raw way…

Will they truly understand you?

Will they judge you?

Will they flee or start to disconnect because they just simply cannot handle what you’ve exposed?

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Or, will they accept you in all of your beauty and flaws?

Will they see that power within you and the strength that shines through?

Will they admire your unwavering loyalty?

Will they see that your sensitivity is not a weakness, but a gift?

Will they recognize how deeply you can and will love with every inch of your heart?

Will they fully embrace all that makes you “you.”?

Be your true self.  Always open your heart, your mind, your soul.  You are beautiful, so let that beauty shine through.  Those that embrace every ounce of your being will stay with you forever, whether it be physically, emotionally, spiritually… Yet, if someone cannot accept that, they weren’t meant to remain in your life.  They were simply there, for that fleeting moment in time, to remind you to always “keep your heart as open as the sky.”

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https://dailypost.wordpress.com/prompts/open/

 

“Turn Your Wounds Into Wings” – Daily Prompt “Struggle”

How do you define “struggle”?  It means so much, to so many, in so many different ways.

My struggle is not yours, no matter how similar they may seem.  Yet, we can share in those struggles.  We can empathize in our fear, our hurt, our will to survive.  We can unite in our strength and our perseverance in the face of that fear and hurt.  We can find unbreakable bonds with those struggling along side us.  Most importantly, we can find our own inner power, a power we never thought possible or ever recognized.  We find strength.

So, take that struggle.  Face it.  Whatever that struggle  may be.  Conquer it.  “Turn Your Wounds Into Wings.”  (quote by Emily Joy Rosen)

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https://dailypost.wordpress.com/prompts/struggle/

 

In the Clear! And, the “New Normal”

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In my prior post “Vacation Period?” Seriously…, I described the traumatic period between my last radiation treatment and my follow-up MRI.  Well, the day of reckoning had come – the MRI results were in.  ALL CLEAR!  No sign of cancer!

Without a doubt, I was indescribably relieved.  I cried tears of overwhelming joy.  That metaphorical tons of bricks weighing on my shoulders immediately lifted.  It was almost surreal.

Once my oncologist sat down with me celebrating the incredible news, we got to another topic… the emotional turmoil of those weeks leading up the MRI.  She knew full-well what I had been going through, thanks to multiple calls to her office.  Even with the clear MRI, she knew I needed help to process all of this.  So, she recommended several things, including seeing a therapist, as well as a psychiatrist for an evaluation to determine if I
needed medication to ease the anxiety that had overcome me during that period of time.

I had never been in therapy.  I was of the strong opinion that here in the U.S., we were over-medicating ourselves with antidepressants and drugs of all sorts.  I’ll be honest – I was against it all.  However, she felt that it was almost a “prescription” to seek out professional help within the hospital’s incredible counseling center.  So, because I literally trusted her and all of my doctors with my life, with much hesitation, I agreed.

Additionally, she suggested reaching out to the hospital’s social worker, who specifically dealt with neurology patients and particularly brain cancer patients.  I had an easier time agreeing to that idea.  It seemed a lot less clinical.  As it turns out, the social worker pointed me to some really great cancer organizations, particularly First Descents (http://firstdescents.org/).

During the dark period, it also hadn’t helped that I had been on a seizure medication known to have terrible side effects regarding anxiety/depression in some patients.  So, with the clear MRI, my seizure doctor was comfortable taking me off that medication and replacing it with another drug.  Changing that medication made a world of difference for my mental state.

Going back to the time period between my surgery and throughout my radiation period (approximately 6 months after my inital diagosis), I had actually been extremely positive and strong.  I had become heavily involved in the National Brain Tumor Society (www.braintumor.org).  I had also just signed-up for a post-treatment support group through CancerCare (http://www.cancercare.org/).  So, I will say I was fortunate that the dark period only truly lasted those several weeks before the MRI.  Now, with the news the MRI was clear, boy, did my whole outlook change!  I went back, almost immediately, to that fighter/survivor, who people had truly been amazed by.  People had called me an “inspiration” (discussed in my post https://braincancerbabe.com/2016/04/19/being-an-inspiration/) and yeah, I felt that way again.

So, life began to quickly normalize again.  I felt happy.  I felt strong.  I felt positive.  I truly felt that everything was going to be okay.  Of course, the fear of a recurrence remained in the back of my mind, but it didn’t dominate my thoughts.  I was meeting so many other survivors and realizing, “Hey.  I’m not alone in all of this.  Other people actually felt the same way I did!  This was NOT a death sentence”  I went back to work, part-time.  Although, I still hated my job and actually regret going back so soon.  I did see the therapist and set up a regular schedule of appointments.  The psychiatrist, thankfully, deemed that I did not need antidepressants.  Life felt good again.  It felt really, really good.

While yes, life did normalize, it was indeed my “new normal.”  I felt comfortable with the fact that cancer had changed my whole world, but it wasn’t all for the worse.  I truly embraced a new perspective on life, namely, “Live every minute of every day like it’s your last!  Appreciate everything you have!”

I saw how lucky I was to have come out of all of this with very, very few side effects.  I was doing pretty much everything I had been doing before cancer entered my world.  I mean, seriously – I had had brain cancer and brain surgery!  Yet, here I was, pretty much the same girl I had been.  I truly recognized what an amazing support system I had.  The kindness, concern and love from even strangers overwhelmed me.  Man, was I loved!

I continued to be monitored very closely by my neurology team.  At every visit, they were beyond thrilled that the dark days were behind me (which I now see as a very brief period of time in the grand scheme of things).  They loved seeing that girl they had first met, who showed what a fighter she was and how she continued to embrace life so much.

I was kickin’ ass.

However, things did change in early 2015.  So, that will lead to my next post and specifically, Round 2 of the cancer chaos.

 

 

“Vacation Period?” Seriously…

In my last post, So, you’re going to radiate my brain????, I talked about my 6 weeks of radiation.  As I described, radiation had become part of my regular, daily routine, as odd as that may sound.  Following the end of my 30 radiation sessions, my doctors dubbed the time until my next scan my “vacation period.”  Seriously?

There’s power in the words you choose, especially when it comes to cancer.  To call that time “vacation” is just simply wrong.  That term should never, ever be used.  So obviously, the period between the end of radiation until my next scan was by no stretch of the imagination, a “vacation.”

First, I lost that daily routine.  I was left all on my own to  find something else to do, day in and day out, to occupy my time.  From leaving my home to arriving back after radiation, I was out of the apartment for hours.  I wasn’t sitting around, pondering my own thoughts.  If there’s one thing that keeps you out of your head, it’s following a routine!

With the lack of that routine, things became VERY dark.  Frankly, this was the first time I truly felt the weight of what I had just gone through.  The “fight or flight” mentality had weakened.  I found myself sitting on my couch, hysterically crying, asking, “What the hell just happened to me?”  It never got to the point of, “Why me?” although that’s a perfectly understandable, common response.  However, it was the first time I truly thought about death.

My husband, my family, my friends – they had careers.  They worked all day.  I didn’t have any fellow cancer patients to turn to.  I felt completely and utterly alone, left with my own frightening thoughts.  Again, to call this a “vacation” makes me sick.

It’s a strange phenomena to me that the end of treatment was worse than undergoing the treatment itself.  I’ve heard both sides of this – some patients see treatment as horrific and ending treatment a true relief.  However, I’ve also met many survivors who felt just like me.  Again, each and every person is different, just as each and every cancer is different.  There is absolutely no judgment in either experience or opinion.

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Another frightening aspect of this “vacation” was the lack of contact with medical staff.  Sure, my doctors were a phone call away.  Yet, going back and forth to the hospital for 6  straight weeks meant there was always someone physically there to monitor me.  If I had an issue, or a question, it could be handled right there and then.

There was a specific incident I remember during that “vacation” when I came down with a simple, routine cold.  I convinced myself it was so much more.  I was sure the tumor was back and it was affecting my whole body.  I also feared that every little twitch in my left leg was an oncoming seizure.  My oncologist’s nurse had to practically talk me off the ledge.  Yet, she understood what was going on.  It wasn’t the first time a patient had called believing the most minor thing was the end of the world.

And so, I truly mentally, emotionally suffered those 6 weeks.  It also didn’t help that leading up to the next scan, my first bought of “scanxiety” hit.  For any cancer patient out there, I would safely bet, you’ve experienced this.  For anyone who isn’t familiar with the experience, it is basically an overwhelming fear/anxiety/stress leading up to the results of a scan.  Many compare the symptoms to post-traumatic stress disorder (PTSD).  Uh, I can relate and wholeheartedly agree.  (As an aside, with no medical training whatsoever, I believe that the entire cancer diagnosis and what trauma follows brings about PTSD).

My immediate post-op MRI had shown that the surgery was a success and there had been a total resection of the tumor.  Yet, there was always that chance that there were cancerous cells still there, lurking around that no one could see just yet.  So, this next MRI was the first since my surgery.

The thoughts that consumed me: Would the scan show the tumor had already grown back?  Had the radiation worked?  Was there serious swelling on my brain caused from the radiation?  Could there be any visible side effects from the radiation?   Although, I didn’t even really know if that was possible…  Was I going to have to undergo another surgery?  This time, would they decide I’d need to start chemo?  Worse off, would they tell me that none of the treatment had worked and we simply had no other options?

At that point, I didn’t know about scanxiety.  I had never met or talked to a fellow patient/survivor, especially one my age.  I thought I was alone in this feeling.  Was I going crazy?  In fact, although I’m sitting here writing about it, I actually have a difficult time putting into words just how consuming and terrifying these thoughts were.  It actually felt like I was carrying a ton of bricks on my shoulders.  And worse off, no one around me truly understood, although of course they were sympathetic and tried to understand.

So, the time finally came where I underwent that first post-radiation MRI.  I don’t believe at that point I had been introduced to the magic of anti-anxiety medication.  So, as far as I can remember, I went into that MRI cold… nothing in my system to ease the fear of: 1.) going into that MRI tube, again; and 2.) the pure, raw fear of what that MRI could possibly show.  P.S. I have never ever once opened my eyes while in the tube, despite the countless MRIs over the last 2 years.

Luckily, the way my appointment worked, and still works to this day, I met with my oncologist just hours after my MRI.  So, I would know the results that day and then.  And that is the topic of my next post.