Posted on April 29, 2015
Bear with me folks, today is going to be a bit of a mixed bag!
First of all, the title of this blog is very tongue in cheek, but I have indeed had my “15 minutes” in the last week or so. My last blog “How to save your own life” was published as an article in the Fairfax media, and all of a sudden things went quite mad. It was posted by the Sydney Morning Herald on their facebook page, Fox FM shared it on all their radio station facebook pages, and two of their websites. Just from the article there were 8,000 shares, and there were more shares via Fox FM. All were linked back to my blog, and this little old collection of my thoughts had thousands (I think it was about 10,000) of extra views. I spent the next few days trying to keep up with the zillions of comments on my article on the various places it was posted, did two radio interviews with 6PR in Perth, and 3MP in Melbourne. I was interviewed for the WHO magazine, and much to the delight of my children, they sent an absolutely charming photographer to take photos of our family, and I am lead to believe that if you buy this weeks copy of WHO you might find yours truly in it. It’s been a whirlwind to say the least.
Here is my blog as it appears as an article, though don’t knock yourselves out to read it, as the content is the same as the last blog:
Here is my interview with Brett de Hoedt at 3mp, if you want to hear my thoughts on the Belle Gibson saga:
I can honestly say that it is a complete honour to be heard, to have a voice, to have read so many hundreds, or thousands of comments that have spoken beautifully of my writing, and most poignantly for me, many of them have spoken beautifully about me being a voice for THEM. It is something I have been told many times, and I always feel a bit embarrassed, as it is just simply something that you don’t usually see in yourself. I just get inspired, or moved, or angry or sad about something, and I sit down at the computer and all the words fall out of my brain and onto the screen without much thought at all. But do you know what? I’ve heard it enough times now that I have to believe it, and I want to say that if I have ever spoken for you, or you have been moved by my words, this is an absolute privilege, and thank you.
The whole thing has been so much fun, but a double edged sword for a number of reasons. The first being the smack in the kisser that I have to learn to realise my limits now that I am on chemo for life. It hasn’t treated me too badly so far, but it has treated me to a few bouts of absolute exhaustion, deeper than anything I have experienced before, where every bone and muscle seems to ache…where you blink and feel like you need a crane to lift your eyelids back up again. It’s all consuming, and absolutely impossible to “push through”…fuck knows I’ve tried. When I have added that to the excitement of the last week, the fact that my writing has been read by so many people, the adrenelin surge to know I was going to be speaking on the radio (and like everyone, I certainly did go “omg, surely I don’t sound like THAT!”)…the photo shoot, gosh, it was all great fun, but I felt like I had been hit by a truck. The glamourous life that was Sunday morning, having our family photographed by a magazine photographer turned into an afternoon of shopping for things we needed for the girls, and this shopping trip involved me stopping continuously to rest…like, every few minutes. Sunday night saw me in bed by about 6pm, so stuffed that I could hardly even form words. I just felt so angry…is there a price to pay for everything in this bullshit journey? It would appear so.
The other difficult thing to come out of this is starting to realise my own potential, and wondering how I am going to channel that in the time I have left. When I was studying community development in 2013, before I got diagnosed with cancer, I also started writing some articles, also published on Fairfax media. They were well received, and a plan started forming about combining writing with community word. While I thought it a bit too smug and egotistical back then to hope that I could be a voice for others, that is actually what I really wanted. I’ve never wanted to do anything self serving with my writing, but I hoped that I could speak of issues that I felt really strongly about – human rights and social justice issues, those who are marginalised, and discriminated against, who generally have a poor image through no fault of their own – refugees and asylum seekers, the homeless, people who work in the sex industry….people who have no voice. I have always thought that I would write of these things in a hard hitting, pull no punches way, but always with the utmost sensitivity and respect for the people at the heart of what I was writing about. And the thing is, I want to do this more than ever, and the events of the last week have made me think for the first time that I actually CAN.
But how do I fit all these things in? Being on borrowed time, and not knowing how much of it there is can be a “blessing” and a curse. It gives me an impetus, a drive, a mind full of creative ideas and a real desire to see more of my work “out there” before that time is up. On the other end of the scale, I am losing hours each day to mental and physical fatigue just trying to carry out normal day to day life and there are so bloody many things that are important to me. Selfishly I still want to chase my career dreams, but of course I want all the precious time with my family I can get. I still want to be a student, and using my brain, but I am getting very behind with my studies, and very annoyed that I am finding it hard to keep up with everything. I know soon I am going to be forced to make some choices, about what stays and what gets left behind, and I am finding that very hard to do. So much for stopping the glorification of busy, eh? I want to do it all, but the sand is slipping through the hourglass….how quickly all the sand will run through…who knows? Whatever time I have left, it will never be enough to do all the things I want to do, and at the moment that is making me so sad and angry.
There were a few other things I wanted to write about, but they are a bit emotional, and I’ve hit my limit on that front. Time to light fires and read books, and cuddle kids, and make hot dinners, and just immerse myself in the love of my family for the next few days, while I hope to get some of my energy back. Third cycle of chemo is tomorrow, and then in about 10 days, a scan to see if it is working. I don’t really have any feeling about it one way or another…none of the symptoms related to my cancer have got any worse…just some transient liver pain, but no more than usual. The exhaustion I know is due to treatment, though just the business of having cancer takes a lot out of you as well. Fingers crossed I can stay on first line chemo for a long time, and the aim is to get me on maintenance after a couple more “hard” cycles. My oncologist has said to me that he has had patients on maintenance for a couple of years before having to switch to second line chemo, and right now I am hoping like hell that I can be one of them because, well…..so much to do, so little time.
We had plans to go to IKEA last night to get some things we need, and this would have been on the back of a huge day I had, attending an excursion through TAFE which involved a LOT of walking, and despite people seeing me in a bit of distress with pain and breathlessness, I insisted on walking the whole thing the same as everyone else. I was paying for it pretty badly last night, so we decided to forgo the Swedish megastar and go to our friends for a visit, which turned into dinner and drinks of the alcoholic kind. Here I am, tired but happy. Good friends are gold.