Apr 24, 2017 Latest post:
Feb 28, 2020
Welcome to my CaringBridge website. I'm using it to keep family and friends updated in one place. Thank you for visiting and for sharing your thoughts and reflections as I share mine along this journey.
On Thursday 13th April 2017, just a few months after my 40th birthday, I went to Whyalla for an MRI brain scan after having trouble making sense of setting a clock a few days earlier. That scan revealed three tumours on my brain, one large, walnut sized and two smaller ones, (one of which turned out not to be a tumour after all). I headed back to Port Augusta to discuss the results with my doctor who revealed the tumours were secondary meaning they'd spread from somewhere else in my body. Immediate blood tests and CT scans from neck to pelvis followed and a tumour of about 3.5cm was identified on my lung. A neurosurgeon was booked and an appointment to have a craniotomy to remove the largest tumour arranged for the following week. A PET scan later revealed there was also a tumour in a lymph node next to my trachea.
It was utterly terrifying for us all, but despite this news we managed to have a nice few days at home over Easter in a little bubble with the kids, coming to terms with what this might mean, sharing the news with family and friends.
On Friday 21st April, less than a week after being diagnosed, I underwent brainsurgery and it was a great success. Step one in the battle was behind us already.
About a week later I commenced a comprehensive and highly aggressive treatment plan which included 33 radiotherapy treatments to the two tumours in my lung area, 4 highly concentrated stereotactic radiotherapy treatments to the remaining brain tumour and the cavity of the one that had been removed and two 6 day cycles of chemotherapy treatment to run at the same time. It was shaping up to be the seven hardest weeks of my life, facing all the unknowns of what the treatment would do to me, but my medical team were confident that they’d wipe out the cancer and I would recover.
My offical diagnosis was stage IV lung cancer. During my treatment it was identified that I have a rare form of lung cancer, resulting from a genetic mutation (not smoking - I am not a smoker), called EGFR lung cancer. As far as lung cancer goes, this is the type to have given there are a range of treatment options using targeted drug therapy that are showing some success in controlling the growth and spread of the cancer. I’ve been on one of those drugs, Tarceva, now since about July 2017. It affects my skin, hair and nails quite a bit but mostly the effects are tolerable. To this day we don’t know if my initial treatment is what has kept me cancer free or if it is the drug that is currently keeping me disease free.
Up until January 2019, I had consistently good CT/MRI scans showing no evidence of disease. I felt generally well and had returned to living a mostly pretty normal life although I do suffer a little from long term side effects from the chemotherapy and have some internal aches from the radiation damage, but these are not debilitating in any way. I now have a partially collapsed lung but I tested it out by doing the Three Capes Walk in Tasmania in September 2018 and managed just fine, despite limited training.
My latest challenge has been a problem that was picked up in my brain scans in January of this year which worsened dramatically over the next few months. This was diagnosed as being radiation necrosis - a delayed long term side effect of the high dose radiation treatment I received nearly two years prior. Essentially there was dead and dying tissue in my brain which was causing severe swelling which led to some significant balance and coordination and vision issues along with some cracker headaches. Back to my neurosurgeon I went and was presented with two pretty crappy options for dealing with it.
Ultimately it resulted in another round of brain surgery in May...the lead up to which was very scary and confronting because of the risks attached and how rapidly I declined in health. Thankfully after removing an “apple’-sized” amount of my brain I’m still here to keep telling this (what now feels like it’s getting ridiculous) tale. And I’m doing pretty bloody well without that chunk of brain if I do say so myself. The other positive is that the tissue they cut out showed no sign of cancer, so I’m still maintaining my ‘no evidence of disease’ status which is brilliant.
I’ve now been bald twice (fortunately in winter both times), had brain surgery twice, had chemo, radiotherapy and dealt with more than I ever possibly imagined I’d have to deal with at this stage in my life while raising my two kids who were 2 and 4 when it all started. Its fair to say that life is pretty unpredictable - I for one am never quite sure what is coming next!
I live mostly as though I’m going to be around for a long time to come and try not to let the negative thoughts in. The kids help keep every day real and grounded and that is a good thing.
At the time I started writing this blog, despite my life exploding in front of my eyes and being hurtled into the unknown, I felt strong, confident and positive. I’m over two years into this journey now and I have rarely wasted a minute asking why me? I have mostly accepted this shitty situation and I have done everything in my power to try to live as much as I can with presence, focus on what is important and gratefulness for what I have. My children, husband, family and friends are my world and I try to embrace every second and hold fear and worry at arms length at all times. It’s not always easy and when faced with these enormous mountains I keep having to climb, like my most recent one., sometimes it’s just damn hard and I am overwhelmed by it all.
Having said all that I have been surrounded by and overwhelmed with love and support since this journey started and the encouragement, special visits, connections and reconnections (and some healthy disconnections too) that this journey has brought me have been awesome. I feel the healing power of every prayer, beam of light and love and positive energy and act of kindness that has been directed my way.
So for now, I’ll just get on with the business of living in all its messy and unpredictable, tough but beautiful and wonderful glory.
Thank you for reading my story.
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