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Running Through It: Rachel + a Brain Tumour

Rachel, finishing a 5K Parkrun in the pouring rain, the day before she underwent a 7-hour surgery to remove a brain tumour.

[[Today, Monday brings us back Running Through It series; today, we hear from #motherrunner Rachel, a 46-year-old Australian, mom of two teenagers and university-qualified nutritionist.]]

It’s been a year now since my world was shaken sideways.

But let's back up. I was training for a half marathon in the Australian Running Festival held in Canberra in April, with my sights set on the Chicago marathon later in the year. My family and I were on a much anticipated ski trip to Telluride with friends from New Zealand.

I’m not a great skier, but I’m OK. We had lovely ski in-ski out accommodation, but to ski out we had to ski over a bridge. Everyone else in our party managed it effortlessly. As the week went on, I was finding it harder and harder to navigate. Crossing it was extremely anxiety inducing; the bridge appeared to me to be very narrow, with a great fall either side.

Strange for a big resort wouldn't you think?

Returning home to Australian summer, I found that our once bright kitchen seemed very dull. I was complaining about the lighting. After a routine eye test at the optometrist, I was referred to an opthomologist. It became clear in her office that something was wrong with my peripheral vision, and she referred me for a brain MRI.

Now you’d think at that stage I’d be concerned. Our medical system in Australia is pretty conservative with plenty of routine, preventative tests,, so by the time you’re 46, you feel like you’ve had many tests for things that turn out to be nothing. I was totally unprepared for the call later that afternoon that explained they’d seen a large tumour [we'll use the Australian spelling through this essay] on the brain MRI.

Although I didn't appreciate it at the time, I was pretty lucky as the doctors could tell this particular tumour (a craniopharyngioma) was benign.

The next couple of weeks passed in a blur of visits to the neurosurgeon and endocrinologist and other specialists. Running became my time to process (as best I could) the enormous news. Leading up to the surgery I was allowed to keep running as long as I kept my effort gentle. Because my vision really was not great, I had to be careful about not falling over.

My surgery was scheduled for the 30th March 2017, just 12 days after finding out about the tumour.

Before I underwent suregery, I was determined to log my 50th parkrun, a free, weekly volunteer-run 5k in various places around the world (they are in 1420 parks!). On your 50th parkrun you get a free teeshirt. (Priorities right?)

I was so grateful to be out there running but absolutely terrified about what would happen the next day: Whether I’d get through it and what the future would hold. I had been read an enormous list of potential side effects. I was worried about how the situation would impact my two beautiful teenagers – Rose (16) and Sam (14).  I was worried about the burden my husband would have to face. I was worried about the impact on my brain. Would I still be “me” after the surgery?

Surgery lasted seven hours, and was completed by the most compassionate surgeon you can imagine. I had held it together pretty well saying goodbye to my teenagers and again to my husband, but was in pieces in the pre-op room. My neurosurgeon sat on the edge of the bed, looked into my eyes and told me it would be OK.

I carried with me a beautiful prayer by one of my dear BAMR friends, Natalie; the prayer included these lovely lines: Please guide Rachel's expert medical team that they efficiently and effectively remove the spot that is obstructing her vision. Please grant Rachel the invitation to surrender her fears with the knowledge that all will be, and indeed already is, well. Heavenly Father, thank you for giving Rachel a beautiful circle of family, friends, and community to support her continuing journey to even greater wellness. 

Another BAMR friend, Sharyl, was given the job of sharing updates from my Australian friend who fielded all the inquiries from the group of BAMRs that I had been lucky enough to meet at the first AMR Retreat in Little Rock, Arkansas.

The previous year I had been one of the runners in the heart-rate training marathon program. Little did I know that program was preparing me for the stress of surgery. Every time the nurses checked my heart rate they’d comment on how low it was! I was able to proudly tell them it was because I was a runner.

The surgery went fine. As soon as I was conscious, I made sure I could remember my wedding day and the birth of my two kids. I had to tell the doctors over and over the name of the Australian Prime minister which was a bit funny as it had changed quite frequently in recent years.

However a couple of days after the surgery, I had a seizure due to hyponatremia, which is known among runners and is caused by low sodium levels in the blood. This seizure meant I would have to give up my drivers’ licence for 6 months: a burden to anyone with active teenagers!  It also extended my stay in hospital to 2 weeks. It felt so strange to go from a fit person to being only able to walk gingerly for a few steps.

Eventually I came home. How blissful that was.

Instagram Post: I know 2.2 km isn't remarkable but 1 month ago I had a benign brain tumour partially removed. It was a long operation, involved 2 trips to the ICU and 2 weeks in hospital. I've been walking every day but tried a 1 km run a couple of days ago and pushed it to 2 km this morning. Waking up to beautiful blue skies every day has been an absolute joy as has the support of my beautiful family and amazing friends #blessed #motherrunner #slowandsteady

My neurosurgeon looked so happy when I asked him whether I could run at the 6-week checkup. He said yes, and of course, I took it easy. The first run felt blissful; for a few moments there I was able to forget about what I had been through. My mantra that was with me through five marathon—I am here now (from Dimity!)—has become my mantra for running through recovery.

It took a good few months before I was prepared to run up a hill or add in any speed work. I still claim that the surgery means I can’t do a burpee EVER AGAIN! (That's my story, and I"m sticking with it!)

Non-running friends could not understand why on earth I was running, but it was so important to me. The miles helped me immensely with processing the enormity of what I was facing, Plus, I wanted to show my kids I was OK. When I was running, I could just tune out from the worries and feel like my old self again. I didn’t care about pace or distance. Having my vision restored meant I could appreciate the beautiful blue of the sky, the changing autumn leaves, and the colours of the bay which I run around.

Way better than a PR: Ringing the bell a thet hospital to mark the end of radiotherapy treatment.

After three months I had to face radiation therapy. I was fixed with a face mask which was screwed to the hospital bed so I couldn’t move for the 30 minutes of treatment. The radiation was daily for 6 weeks. At this stage again I was blessed by my friends. I couldn’t drive there, so there was a daily roster of friends assigned to take me to the hospital and keep me company. It’s funny; if I had been able to drive, I would have brushed off suggestions of help. It turned out to be such a blessing—like a coffee date without the coffee.

I kept running through the radiation treatment, but it was so tiring. The only thing I can compare it to is the tiredness I felt with a toddler and a newborn. I was running 3 days a week and going to the gym for strength work 2 days a week.

People asked why I didn’t give myself a break. My answer? I was so determined to show my kids and myself that I was “just like” my old self. One of Sydney’s iconic running events, the City to Surf, a stunning 14km run from the City to Bondi Beach with 60,000 other runners, was the week before I finished my treatment. I decided to run it with my rock—my husband—by my side.

 

Rachel, finding her strong in so many ways.

Finishing that event made me so proud. My virtual BRFs stepped in here too. Pat, one amazing BAMR sent me a wonder woman footnote and her “found my strong” medal and tee. That sent me to tears. The love of our tribe has been strong.

So now here I am, a year on, and my world is slowly coming back upright again.

The tumour is attached to my pituitary so it will never be gone. But the surgery and the radiation have reduced it significantly. My vision is great and I can drive again. I experienced a load of side effects, including instant menopause, complete loss of smell (we hope it will return), a sluggish thyroid and about 10kg of weight gain due to the steroids and my poor, confused pituitary gland.

I’ve found the weight gain really challenging. I am a Clinical Nutritionist and I help a lot of women with weight issues. I try to remember that the steroid medication led to the weight gain and it is so important for managing brain swelling. That, of course, is so much more important than a few extra kilos, but it’s frustrating when you can’t fit into your old clothes. I also miss being able to smell. I’m a keen cook and I’ve learned the hard way to make sure I set the oven timer due when I make my favorite granola. (It doesn't taste as good burned.)

I am back in a Train Like a Mother plan, focusing on a half marathon in May. It took me a long time to want to sign up for a race as I know it will be at a much slower pace. (Yes, I am still struggling with my ego.)

That said, I have a new-found appreciation for my girlfriends, both the ones in Sydney and those around the world. I've also returned as a run coach for a local women’s learn-to-run group and I’m now the event director of a new local parkrun.

Running through it has helped clear my mind in dark days and helped me reflect on how truly lucky I am.

I am here now.

Have you Run Through It—a challenging situation or stage in life—at some point? We want to hear from you!

Write up your essay (no more than 1,200 words, please), then email it to us. We'll be in touch when we can publish it. Thanks!

8 responses to “Running Through It: Rachel + a Brain Tumour

  1. It is April 8. I am so glad Rachel had a chance to tell her story here. I know every mother runner and woman will be encouraged especially knowing how Rachel kept her family top of mind and heart as she fought her battle with cancer. I waited until this morning to read what she shared. I am running my first marathon today. I wanted to have her presence and spirit in me as I went out the door. I will remember “I am here now” and her strength and courage as I run today. Thank you, dear Racheld, and thank you AMR!

  2. Thanks for sharing Rachel. Best of luck to you with your continuing recovery. Erica Richards, I hope you are doing well in your recovery also.

  3. I think I’m a bit psychic Rachel. I was in Target last week, say a display of Tim Tams, smiled, and thought of you. I ,just have known this lovely story about you was about to be published. You are so strong! Someday, I hope to visit you and run with you by the water! Xoxo

  4. What an amazing story, Rachel you are an inspiration. This has been a wake up call for me never to take my good health and love for running and this community for granted

  5. Thank you for sharing your story. We find the treasure of true friends when we face scary stuff. I’ve found that my siblings don’t know my strength or will as much as my friends are willing to push me. You’ve set a remarkable example for your children.

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