29 September 2016 It's Orchid Season!

Sorry – it’s been a little while since I last updated, and I’m starting to get reminders!

We’ve had quite a busy (for us) couple of weeks, managing without our oven which has decided to spit the dummy (now we’re just waiting for a switch – but you don’t realise how much you rely on the oven until you don’t have it). While we wait we’re giving it a proper clean – quite an overdue task, but one that I can reach quite well from a wheelchair height.

Interestingly, the electrician who came to check out the oven, also told me of ‘natural cures for cancer that no-one wants to talk about’ – and this morning when Brian went outside he found at the door a book kindly left from the electrician “The Top Ten Natural Cancer Cures”. Perhaps now I should explore ‘Qigong’, ‘Essiac Tea’ or ‘Turkey Tail Mushrooms’?  I’ll probably hear more when he returns with the oven switch. Sigh... cancer is such a vexing pathway to navigate.

It’s spring – and because it has been such a wet winter, it seems that it’s a very good year for finding native orchids in the local bushland. To that end, last week we went for an overnight stay in Stawell in order to ‘check out’ some of the spots Brian has found in previous years – and yes, he was a very happy boy with the photos he was able to take of various orchids - including some spider orchids with different colourings to his previous photos. We also met up with two of Brian’s mates from Hamilton, and the three boys very happily traipsed their way around the bush, looking for the more unusual bush specimens. I was happy too, enjoying a lovely read from my kindle with the window wound down so I could see, hear and smell the bushland. I also used my ‘Aldi’ walker to take the odd gentle stroll around. And the drive through Hall’s Gap and Mirranatwa Gap never fails to take your breath away as you wind through the mountain ranges which were coated in wattle and heath.  

Brian also took a photo of this very rare pure white magpie – only found in a very localised spot out of Hamilton (that we know of).

Meanwhile this morning Brian has energetically given the car a darn good clean, following our recent bush drives - and I was extremely pleased to hear that he found a dead huntsman spider (clearly the result of the hefty dose of Mortein sprayed around the car following my horrified sighting of the huntsman some time ago).  

16 September 2016 Hip review

Life goes on, and this week I have quietly celebrated another birthday – a day of enjoying some extra contact from family and friends, including plenty of chuckles as I contemplate having as much birthday fun ‘as a seagull with a French fry’, or even reflect on the following: 

Never forget - your body is a temple... even if the steeples are pointing in the wrong direction

Enough said!

It is now over 12 months since I had surgery to stabilise my spine with rods and screws – and when I recently asked my oncologist if it was time to have a review of my left hip, he agreed! So yesterday Brian and I choofed off to Warrnambool to meet with a different orthopoedic surgeon.

After all the rain we’ve had of late, driving along some of the country roads requires quite some concentration, dodging potholes and roadkill (there were 2 dead koalas) and also marveling at the swollen dams and flooded creeks and low plains. But I did some of the driving too and that was good.

It was quite a worthwhile trip, as the surgeon was actually very good at explaining things from the xrays, though he reinforced the precarious position of my hip and the severe risk of pathological fracture, with the risk of a fall being my biggest threat. However he agreed to refer my case to the specialists at St Vincent’s Hospital to review, particularly considering that the cancer is currently stable. Maybe there's some new cement that can be injected into the bone to strengthen it, as originally proposed. So perhaps one day I will have a call to come to Melbourne (probably just to tell me that nothing has changed). Meanwhile he also gave me a referral to a physio to explore options of improving my mobility, perhaps using crutches, so we’ll see.

Brian’s health continues its usual pathway of having ‘good days and bad days’, and despite trying some different pill combinations we don’t seem to have struck the magic answer, though there has been some improvement I think. His Parkinson’s symptoms are currently well managed. He has just now returned from the chemist with a fistful of scripts between the two of us. We have long since passed the free script threshold so that's a blessing (very sorry all you diligent wage-earners, but your taxes are appreciated).

Brian doesn't mind the trips down the street - it's the photos he objects to...

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.