ASTROcytoma GIRL

My brain cancer journey

2017 was my dedicated year of learning, I could have never anticipated just how much I would learn.

One of my goals this year was to talk about my experiences about brain cancer to hopefully spread awareness about the horrible disease, so here it is.

In March 2017 I was diagnosed with brain cancer, IDH mutated grade 3 anaplastic astrocytoma to be exact. 

For those of you that don’t know a lot about brain cancer *slowly raises hand* it’s one of the better ones, apparently.

Let’s talk about symptoms..

I had my twins in April 2016, so a lot of my symptoms looking back aligned with pregnancy or post natal depression; headaches, tiredness and lack of energy. I thought it was lack of sleep or too much coffee as anyone would right?

After the boys started sleeping through, the same symptoms started  reappearing, but at the forefront were the head aches, always the headaches. This time I put it down to the polyps I’ve always had on my sinus or that my anxiety had developed into depression. I saw 3 or 4 doctors until finally they put me on antidepressants. I felt like I was going crazy and no one was taking me seriously. I kept telling everyone something was wrong and even said to my husband at one stage “what if it’s a brain tumour” in jest of course, looking back now not so funny.

My tumour is a primary brain tumour, and therefore it started (and will end) in the brain, it would be extremely rare for it to spread to other parts of the body. For all the doctors know it was likely there for 10 years or more.

It wasn’t until I had a seizure at midnight in bed thankfully, an ambulance ride and a scan that they confirmed a tumour the size of a golf ball in my left frontal lobe.

Here is my husbands account, I am so thankful for his quick thinking and ability to act, I don’t know if I could have done the same, I probably would have just frozen.

 

Emma suffered what is called a tonic-clonic seizure at 12:01am Sunday 13th February.
Our lives are about to change forever.

I woke up to Emma seizing and after 30 seconds of not knowing what the hell was happening I managed to call 000.

Thankfully the operator knew it was a seizure but I still thought Emma was dying in front of me. It was a truly frightening 4 minutes.

The ambulance arrived 10 minutes after that, Emma completely confused as to what was happening still, but alive.

Zac and Ash (our friends) got to our house faster than the ambulance and looked after our sleeping buttheads.

Emergency room.
“Oh it is probably a build up of all that stress that led to the seizure, that is what google is telling me”
Emma replied something like “it says it could be a brain tumour”
“Don’t be stupid, don’t say that”

After a good 5 hour wait at RPA emergency Emma went in for a CT scan.

I had to go and meet Rhonda (Emma’s mum) who was driving over to look after the boys.

In what can only be described as a comedy of errors, Rhonda had had a car accident.

While we waited for Ken and the tow truck, Emma assured me via text that everything was fine and to come back to the hospital to pick her up after she had another test.

We also just found out that Ellery James, our first nephew, entered the world that same morning.

(right?)

I returned to the hospital only to find Emmy standing there with a drip in her arm. She burst into tears and I knew something terrible was found. A moment I will never forget.

“A 4cm lesion is showing on her left frontal lobe…”

We both went into a private room and the cry faces were not pretty!

What a day.

 

As terrible as that day/night was I am so lucky to have had my seizure when and where I did. I always say to myself, imagine if I was driving with our babies in the car or if it happened while I was showering while the boys napped. I am so grateful everyday for that.

So I spent my 28th birthday in preoperative admission for 4 hours to prep me for 10 hour brain surgery and then went on to have 100% of MRI visible tumour removed. Happy birthday to me!

I’m also young(ish), female, and stubborn; all favourable factors.

The location of the tumour meant it was more favourable (as far as tumours go), and it didn’t affect my speech, motor functions or anything really. I was and still am extremely lucky.

Fast forward a couple of weeks, result time!

I guess I was really naive to think that because the tumour was all removed it meant I could just move on with my life, but that wasn’t the case.

I was told the recommendation of the RPA tumour board was for me to have radiation and chemotherapy, that in itself was a lot to digest and I just broke down in tears. What’s worse they left a staple in my head from surgery that I had to go and get removed afterwards pretending like nothing was wrong.

The next few weeks were pure fucking hell. Between all of the doctors appointments, it was like I was mourning my life.

No one wanted to leave me alone because I was at risk of having another seizure.
I couldn’t drive, I couldn’t be left alone around my sons by myself, I couldn’t not have my phone on me at all times otherwise people would worry I couldn’t even shower without someone being home. There were a lot of ugly tears, arguments and “why me’s”.

I didn’t want to have chemotherapy, I didn’t want to be sick. I didn’t want to go to the hospital everyday for rounds of radiation, well to be fair I didn’t want to catch the bus to the hospital everyday when I felt well enough to drive. I felt completely useless, like a failure to my family.

Thank god for Ryan, my husband. He just immersed himself in everything. Medical marijuana, clinical trials, the best treatments for my particular type of tumour (seriously hit him up, he’s practically a doctor now).

He wanted to make sure I made the decision as my own presented with all of the facts.

I will post about how I came to my decision in the next couple of days as I am getting really emotional, but I will end with if you are having persistent headaches or feel something just isn’t right, please push your doctor for a referral for a scan.

Emma x

 

 

 

 

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