10 September 2016 Reflections

Brian and I have felt quite flat over the past few days, with the news of two cancer-related deaths of people dear to our hearts. 
Firstly there was my cousin Necia (one of my 60 first cousins – which happened because my mother, one of 9 children, married my father, one of 9 children also). Necia was diagnosed around 6 months ago with pancreatic cancer, so the progression of the illness was quite quick. 
Secondly we were shocked to learn of the sudden decline and death of our dear friend Jeff Blackman – Brian’s orchid ‘mentor’ and good mate to us both. Jeff had a heart of gold and would call on us often with a paper and a sparky word to lighten our day. He was in remission from leukaemia, but some recent blood tests showed inconsistencies. This however didn’t stop him and Eunice- his new wife of 11 months- to drive to the West for ‘orchid season’, but they only got as far as Kalgoorlie before he was hospitalised and transferred to Perth where he died 2 days later. We’ll miss him a lot and feel very much for Eunie.

These deaths can of course make us think of our own mortality. Although my cancer is a Stage 4 metastatic cancer, I am currently doing very well under the Targeted Therapy tablet Sorafenib. Praise God for these amazing drugs! But whilst I am blessed with a ‘glass half full’ attitude to life and it is normally easy for me to just get on with life ‘no matter what’, nevertheless there are moments when I can relate to the following reflection which I found on Facebook.

Feel free to read it if you wish.

The Strange World of Metastatic Breast Cancer             Martha Carlson

The world of metastatic breast cancer is a strange place to live when treatments are working. You look about normal. You feel about normal. Yet there’s that vast canyon separating appearances from the realities of the diagnosis.
But being open about a metastatic diagnosis means confronting the inevitability of increasing disease, whether that disease is happening now or at some as-yet-unknown time in the future. It means being able to tell the people you love and those who you may grow to love that there is fear and pain, sadness and loneliness behind the smile that every one of us seems to put on in public.
Because I look perfectly fine, I get to live my life like anyone else. I don't get special treatment anywhere, random strangers don't give me encouraging looks or hugs, and I am subject to same rudeness we all experience while doing mundane activities like waiting in lines. I wouldn't want it any other way. I admit it, though, there are times when I want to scream, "Please! Stop being a fool and look at me. I have stage 4 cancer! Be nice to each other!"
It is doubly hard to explain to a friend in denial or who just simply hasn't really listened or understood that, yes indeed, treatments for metastatic cancer continue until they no longer work and the cancer spreads further. As much as I would like to fully return to my old life and spend less time thinking about cancer and its various treatments, I will always have some portion of my brain and heart devoted to the knowledge that my future is not entirely under my control. Now, before you say life is like that for everyone and that no one knows when he will get hit by a bus or whatever, I urge you to reconsider. Those words minimize and ignore the realities of living with this disease.
When I think about metastatic cancer and that metaphorical bus, it is in this way: unlike the person who may or may not get hit by a bus tomorrow, I am not wasting my time wondering if I will get hit. I already have been. I am living daily with a disease that is likely to hit me harder at some undefined point. And right now, I am busy doing everything I can to move out of the way as that bus tries to back up and head my way again.  

9 September 2016 The Wig

After wearing an assortment of hats and beanies over the winter months, I now have the dubious honour of being the first person in Portland to take a wig from the newly-established ‘wig library’ at the Portland hospital. After discarding the long blond wigs, or those with streaky curls, I have settled upon a short conservative style.

Now you would think that a wig is a wig is a wig, but things are seldom as they seem.

Firstly there’s a net liner to put over the head, making sure it fits directly over the hairline.

So far so good.

Then comes the instruction sheet for the wig, with helpful suggestions like:

* Identify the front and back of wig

*The label always goes in the back

*Gently rock the wig back and forth until it is sitting on the front hairline

*Be cautious when cooking. Keep your head away from hot ovens and stoves

*On a windy day, a scarf/beanie/hat can be tied over your head and under your chin

So it all takes longer than expected, and I am quite surprised at how sensitive I feel about wearing a wig! What is it about women and their hair? Why is wearing a wig different to simply putting on a hat? 

Anyway yesterday I was finally ready for my first public airing of the new hair so I headed off bravely, clinging to Brian’s encouraging words. But as we pulled up outside the church my worst fears were realized as the mild breeze had developed into a gusty sou’westerly, and I had no difficulty whatsoever imagining Brian having to stumble after my wig as it rolled into the gutter and quite possibly watching it tumble across the road onto Nun’s Beach, into Portland Bay and finally into the Southern Ocean (where no doubt it would provide shelter for some sort of sea creatures). 

Fortunately no such dramatics occurred, and after a few kind words from friends, I was able to forget all about it – that is, until we arrived home and I started to think about heating up something for lunch, and I remembered with caution the instruction sheet. 

Off with the wig, and on with a hat!