So this past week has found us adapting to a new post-surgery routine and taking in the instructions for the next steps in treatment... for the most part we have felt incredibly blessed to have made it through diagnosis and brain surgery without any problems. I have no more headaches, and apart from some wicked black eyes and a bit of superficial swelling it wasn't long before I was feeling back to normal.
The Consultants in Wellington informed us that due to the fact 10% of the tumour was still in my brain, some follow up treatment in the form of radiation would be necessary to ensure correct control of the remainder.. this was not a problem and we were more than prepared to do what was necessary to get rid of the over-stayer that was over staying.
Up until the meeting with the Oncology department last Thursday, I had stayed away from Google and the web diagnosis side of things - I didn't want to frighten myself, and knew that the histology wasn't due back for 7-10 days after surgery so was prepared to wait for a correct diagnosis.
Thursday was the day it all changed.... again. The Oncologist (I think was Russian) in his very matter of fact manner explained the results of the histology and told me I have something called an Anaplastic Astrocytoma. This was explained as a grade 3 brain tumour on a scale of 2-4 in adults, and has a very agressive reoccurral rate even after treatment - we were told there was a 90% chance it will return in the same part of my brain and for some reason (my thoughts had become fuzzy by this stage), and there was a reason, they could only do radiation to the same part of the brain once... The kicker of a prognosis came next - 'on average people with your condition live 5-10 years'. I had the overwhelming urge to get up and leave the room - but didn't. Tim had asked the Dr three times to repeat what he'd just said as he thought he'd misheard him completely.
Sadly this was not the case, and after a numb farewell from the office and a promise to meet again to answer any questions we may have, we were left to each other and out into the very big, momentarily terrifying world.
Had we totally underestimated what we were dealing with? Should we have researched the intermediary diagnosis on my discharge papers? Did the team down in Wellington think we were stupid for being so upbeat about the whole brain tumour thing? What were we going to do? How was I going to tell my Mum? My Dad? My brothers? My beautiful sister in Perth? What about Toby? What about the baby we were trying for? What were we going to do?
We drove straight past our house in a fog and ended up at the beach. Tim took Toby for a walk and I broke the news to Mum first, then Dad as he arrived home from work, then each of my brothers as they arrived at the house also. We decided that Toby and the big boys need not know about the gory details until such time that they may need to, only that I needed some more treatment to make sure the bits that were left got fried up and went away.
Mum was and is amazing, offering her support and loves and cuddles and not ready in any way shape or form to let me go anywhere anytime soon. My Dad cursed and wanted to take my place straight away - denial was his course of action - 'he must be wrong, we'll find someone that knows what their talking about'. My brothers were stoic and offered their condolances... my sister still didn't know and I didn't know how to tell her. This was something that needed to be done in person and there was just no way of doing it.
As we returned home that night there was a text message from my sister Cherie in Perth, asking how the appointment went with Oncology... I had to tell her. I replied via text and heard nothing... expected to hear that she was on a plane and heading back to us straight away... nothing.
We held each other that night. Not sleeping, not speaking, just being. I struggled with letting Tim out of my sight, and the anxiety within me was unbearable. What was I going to do? I am too young.
Next day brought sunshine, brought cars driving past, cows in the back paddock, Toby off to school... life carried on as per normal. We were tired, drained, emotionally weary and frightened, but carried on through the motions of the day as Tim left me at the beach with Mum while he drove to collect his boys from Hawkes Bay.
I phoned our wonderful new GP who agreed to see me after hours that evening, as I felt I needed something to help me sleep... I knew that if I could sleep, my thoughts would become clearer and I would feel stronger to face this enormous hurdle ahead of me.
I tried to sleep in the sunshine at the beach, curled up with Mum and the dogs on her bed, all that came was tears... tears and visitors, well-wishers and lots of cups of tea.
I missed Tim, he'd been gone only a few hours but I needed to have him with me.
Toby came home from school and life had to return to the norm for his sake, we did some homework and read some books on Nana's bed in the sunshine - all very normal things to do... even for a girl with brain cancer.
Tim arrived home with the big boys. It was a relief to see them - again another sense of normal, and I think they were pleased to see me as it was the first time after surgery and they could see that I was okay... on the outside at least.
A promise of takeaway tea had the boys behaving beautifully in the waiting room, while Tim and I met with the GP to discuss the oncology news and what we could do about it. We left with a script for some sleeping tablets and anti-anxiety stuff which would hopefully get me through the next few tough days processing the news.
They did, and I'm pleased to say I do not NEED them now (8 days on) but I know they are there if I do.
I got an email from my sister who didn't receive my text - I replied to her email (second worst way to deliver shitty news) and hoped she would be okay.
As the bruises on my face and swelling on my head have subsided, my resolve to fight this has strengthened. I have researched for positive stories, treatment options, survivors, forums, chat networks, and I have found that HOPE is NOT lost and I will NOT lose HOPE.
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