This website has been set up to provide updates to our friends and family on my battle with a brain tumour and to share some of the experience. I don’t envisage I will be a frequent blogger but I wanted to, at the very least, acknowledge everyone that has supported and assisted us throughout this period.
Over the past 10 months I have been humbled by the support and assistance we have received. Our little family has been so fortunate to be surrounded by so many wonderful people and support from two workplaces (Scentre Group & KPMG). We have been showered with food, flowers, offers to babysit,and benefited from some incredible connections into the medical community. However, most importantly we have never felt alone. The embrace from our family, friends and extended community has had an incredible impact on how we approach this experience. The initial diagnosis was terrifying, but there has never been a day when we have felt like we are in this alone – and for this I want to say Thank you
I would also like to make a special mention – my husband, Daniel. Initially, I felt as though the life we had built had all but been erased, but it was Dan that found the fortitude to move cautiously forward in this new direction. His pragmatism has had profound impact on my own reaction to the disease- “we can’t spend time worrying about things that have not happened yet” – and he is correct. I am very grateful for Dan’s love and partnership, as we take this path together.
A quick recap
On 23 July 2018 I was diagnosed with a diffuse astrocytoma (grade 2/3). This is a slow growing form of brain cancer. In early August 2018 I underwent a subtotal resection that removed approximately 30% of the tumour. The remaining tumour has infiltrated the left medial temporal lobe and the para hippocampal region. The life expectancy after diagnosis for patients with this type of tumour is around 10 years, before the graphs start to fall off a cliff. So, with any luck (and I’ll take all the luck) we are playing the long game here.
In November 2018 I started a 12-month course of chemotherapy. Due to the size and diffuse nature of the disease we took a reasonably aggressive approach to chemotherapy in the hope that we could reduce the required amount of radiation, when the time comes. My current chemo schedule is 21 days on and 7 days off. I am taking a drug called Temozolimide (TMZ). I will not lose my hair with this chemo, but will lose most, if not all, with radiation. As at the end of May 2019, I have completed 7 rounds of chemotherapy.
What is happening now?
In March of 2019 I waved the white flag and decided to step away from work to focus on my recovery. This decision did not come easily. I loved my role and my team, but I was finding the pressures of a busy workplace to be contrary to what my body needed. I am very appreciative of the support we have received from Scentre Group in these past few months. I could not have ever imagined that I would receive such support from so many different parts of the business, despite my relatively short tenure. So, to Scentre Group – Thank You. The impact of this support on my well-being and family has been immeasurable.
With this break from work I have taken the opportunity to enjoy time at home. I have spent the past three months settling James (a newly minted 6 year old) into school and helping him deal with all of the challenges that come with a new school and new friends. Julian (3) has changed childcare so that he is closer to home and now only spends a few short days a week there. We cook, draw, paint, play garbage trucks and ride our bikes. This has been such a special time, for which I am extremely grateful.
What happens next?
The next few months are busy with testing and doctors’ appointments as we investigate some new symptoms and challenges which may be related to my medication. Fortunately, we live in Australia, so while there will be some out of pocket costs, it will all be manageable.
I have not planned much past finishing chemotherapy in November, but I also know that idle hands… don’t get much done. So, I have some ideas for small projects that I can work on in the time between school drop off and pick up. These include the development and testing of a Brain Cancer diary and app to help manage appointments, scans, reports and information relating to treatment protocols. I am open to all suggestions you might have for such a project, so please send them through.
I will also be continuing my fundraising efforts – Dan and I are entered into the 2019 City2Surf. Further details can be found here.
Finally, I leave you with a quote from Stephen Hawking from one of his last publications, Brief Answers to the Big Questions – “We have this one life to appreciate the grand design of the universe, and for that I am extremely grateful”. – Stephen Hawking (1942 – 2018)