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Validating acts of charity

When strangers do selfless acts for others – should we validate it on social media? – A ‘ThinkWithCancer’ piece.

By Billy C

I’ve been coming to the same cafe nearly every morning for 5 years, it’s a few doors up from my tiny little flat in Fitzroy. Non pretentious, old skool and a bit shabby. I like it that way.

Pretentious coffee serving with obligatory matte filter applied. Photo by Nathan Dumlao

It attracts the self proclaimed Fitzroyalty, musos, tortured artists, local businesses, winos, chatty Debbie Patty Cathy’s in from the country on a gawking tour, gym nuts, tradies, trendoids, and so on..

Day in day out the routine is solid, I people watch while reading work emails, often doing my infamous WFC days at the front table so I can judge people walking up Brunswick St.

But one thing that goes unnoticed, is the immense kindness and selfless acts of charity the staff at this cafe give out, done without fanfare or social media validation pleas.

3 times a week, two old men from the public houses come here for breakfast. Just eggs, sausage and toast with a coffee. Nothing fancy. Their names are Frank and Vincenzo. Both cranky and lonely widowers, unkempt and tired. But they have been coming here for 22 years. For the past 5, alone. The cafe only charges them $5 for their breakfast. They never say thank you, and nor should they.


Not our old men. Photo by Cathal Mac an Bheatha on Unsplash

Every other day, a local fixture called ‘crow’ sits out front picking apart ciggie butts collected from the gutters, and rolls their own smokes. Dressed up like the star of a major movie of the same name, the cafe staff look up, wave and bring out a coffee, a large latte. They only charge $2. They don’t complain when crow starts smoking out front.

Then there’s young Susie, tired and washed out, a waste bag and PICC line discreetly tucked into her shoulder bag, she’s looking a little yellow today. But my gosh, her laugh is infectious. She’s finishing round 4 treatment 11 of chemo for a particularly aggressive lymphoma. “This is the last attempt, I’m done, do me in now” she says while cackling.
I pay for her chocolate cookie and the cafe shouts her green tea. “Girl you make us laugh, even though we should be making you laugh” says the owner to Susie.

A sweet treat for a sweet story. See what I did there?. Photo: picjumbo.

This place has stood the test of time, 27 years in the same spot. It’s seen it all. Only changed hands twice. The new owners, a mother daughter team do it tough. They’re not packed from open to close, but they have steady streams of foot traffic. They never bitch or moan, they just get on with it.

The fact they commit simple acts of kindness to balance karma is one of the most human and generous things I have witnessed. When I was doing it tough and very sick, I’d often have a cookie placed in my hand as I left with my coffee, with a dismissive wave off “forget it, enjoy it” other times they’d drop a sandwich at my place, just a few doors down, because I was too sick to move. Done with a smile, class and good humour.


Photo by Robert Baker on Unsplash

It got me thinking about the acts of charity and kindness businesses pull every day without making noise, I’m sure there’s lots of them. You can’t find them on social media, that would defeat the purpose of doing it quietly. But what stops us from making noise and championing their acts? Do we keep it our little secret?

I ask you this as you pick up your ethically sourced hand milked almond Spirulina chai latte and bring your iPhone X up to Instagram it, what’s this worth to you? How does this benefit someone else? And as you consider this, pay for someone else’s breakfast. Quietly. Leave.
Go on, I bloody well dare you.

Telling people you’ve got cancer

So you got the news today, you’re sweating, or (metaphorically) shitting yourself.

You’re wondering who to tell, and how much to share right now, right? You don’t want to be a burden, you’re always the one who helps others and you’re SOOOO selfless, right?

Have you ever considered that NOW, yes, RIGHT NOW is the time to be completely SELFISH?

You just got handed a possible death sentence in a small handful of words, your life changes right now. And it’s up to you who knows.

Choosing who does and doesn’t know your health concerns is a complex choice. Here are some recommended tips.

  • Tell no more than 5 (five) people – they can be anyone
  • You choose when it’s a good time, and how best to break it
  • You choose how your friends and loved ones can support you
  • Tell them to ask how they can help, instead of asking you what they can do.
  • Remember to crack a few jokes, yes the news is terrible, but laugh at the universe!

No Limit

Every year lived and not dying from Myeloma is a good year.

2018 is all about reaching new heights. Growth, challenging myself and posting cliche images with tongue planted firmly in cheek.

This year is all about managing health positively, enjoying the small wins, experiences over ‘things’, growing past being ‘sick’ and not limiting myself based on what doctors say I can do.

So c’mon, grow with me, reach new heights. Touch the clouds. Fight like hell.

nine months later

Happy Birthday!

Happy birthday to my immune system which was installed in February 2017.

Happy birthday to me! on October 31, I survived 255 days post-transplant, beating the odds that were not in my favour, and thus proving evil never dies!

It’s certainly been a wild ride these past few months, with countless followup doctors appointments, complications, recovery, weight gain, a daily feeling of ‘ugh’. It just didn’t stop. My full-time job has basically been being ‘sick with cancer’ as opposed to ‘fit with cancer’. I had several complications over the prior months (which I’ll go into in other posts), several celebration moments and then all of a sudden, in July 2017, I found myself returning to part-time study.

You see, before I got ‘sick with cancer’, I was studying a double degree in health bioscience and oriental medicine, with a major in Musculoskeletal therapy. Of course, everything goes on hold, your life, your plans, relationships, goals, dreams etc when you’re delivered a double “fuck you mate” in the form of a diagnosis of two rare blood cancers. So I begrudgingly stopped everything in 2016 to focus on trying to beat this son of a witch. Now, after enduring a hectic stem cell transplant, nearly dying (twice), and lifestyle shattering complications, I found myself back at university. I returned with such vigour, allowing myself to completely immerse in a life that had NOTHING to do with cancer, at all. This is why I have not been contributing to the site at all, so for that, I am sorry.

 

 

 

 

 

 

 

Me giving cancer the finger

Taking a 6-month break from being ‘fit with cancer’ allowed me to really think about the future of this site, what it means to me and whether the ethos of the site still stands. I’ll be doing a little bit of tweaking over the coming months, including beginning a video and podcast series on the day to day tips of living pre, peri, post diagnosis and treatment, including what’s worked for me. This also means I’ll be getting some guest writers and speakers on board to talk about common topics raised around blood disorders, tumour cancers and the like. So stick with me,  it’s gonna be fun.

But back on topic – it’s been NINE FRICKIN MONTHS since my stem cell transplant to hopefully quash Myeloma & halt the production of Amyloid in its tracks. My doctor’s appointments have rolled back to quarterly now, with monthly blood tests to keep an eye on things, especially my numbers. I’ve felt mostly well, in fact, i’ve felt bloody fantastic the past two months! My energy levels have almost returned to normal, which is amazing! I know how lucky I am to be in this position, and am forever grateful.  It just means the fight against these two blood cancers can be maintained, and with some hope keep them in a low active state.

Low active state? WTF? Yeah – about that. I actually relapsed at some point between August and Octobers blood tests, with my abnormal proteins (Paraprotein) creeping back up to double digits again from around 3-4. It technically means I have relapsed, but I kind of haven’t, as my blood markers for everything else are great.

This means I am in a grey area and the doctors are cautiously advising it might be worthwhile beginning maintenance therapy, but it is totally my choice as the consequences outweigh the benefits. I have agreed to keep monitoring my blood and living the way I am because I must be doing something right.

I’ll admit hearing this news made me feel pretty glum at first, given I was beginning to wake up every day not thinking about being sick, but what’s the point of holding onto something or a possibility that may never happen? I could let it completely consume me, fall into a heap and become powerless in this fight against my body, or I can fight my body by bettering it every day.

I accept that my lifespan is limited and that I will be lucky to see 40 (I just turned 38). But I don’t let the impending sweet embrace of the reaper worry me so much, more on embracing mortality in another post. Damnit! this post was supposed to be a celebration. Good one fuckhead! 

Ok so back to the point – I am alive nine months after my transplant. It was a 50/50 chance I’d even see this point. Good. I don’t plan on dropping dead anytime soon, mainly because I like annoying people, and writing and talking about myself a lot.

 

My promise to you, dear blog readers, is that I *will* be doing more here because it’s not over yet.

 

 

Whoops! i’m not dead.

I noticed a bit of a problem with the site this week when I put aside some time to do some more writing. It turns out the posts I saved during my stay in hospital never posted as published (fuck fuck fuck).

And to top it off, they have all mysteriously disappeared from my drafts folder (double sweary fuckity fuck rant)

Luckily I have a backup in the form of a handwritten ‘transplant diary’ which I kept. I really did have a lot of spare time on my hands and sometimes pulling the laptop out and setting it up in a bed on a wobbly meal tray was too complicated. So I shall

Incredibly frustrating as I wanted to have the personal momentum and good energy run with me as I posted from hospital. Oh well! Now I shall endeavour to transcribe and publish this little diary as soon as possible.

But the takeaway message is – I am NOT dead – I survived the transplant – it’s day +Fifty something (I lost count) and I am doing pretty fucking well .

More soon.

 

BC

An uneventful transplant

Happy Birthday!

I had my new immune system installed on 16 February 2016.

It consisted of 5.5 million of my own blood stem cells, which were harvested via a process called Apheresis in October 2016. As I was quite unwell and unwilling/reluctant to continue to the next stage at that time, I agreed with my treating doctors that we would allow me time to recover for a period of time, and then get stuck back into it.

So here we are, four months later. All the meetings, appointments, phone calls, arrangements, calendars, favours, work hours, tears, worry. All done in 45 minutes. No drum roll, no ceremony, just me, two nurses, 5.5 million stem cells in liquid nitrogen and a lot of patience!

My wonderful transplant nurse practitioner here at Peter Mac, Trish, gave some bonus commentary in the video to explain a little more about the process. Trish has been absolutely wonderful in keeping me informed, delving into great detail and always remembering the small things. She has no doubt thousands of patients to remember, and I am deeply touched.

The infusion/transplant was not painful, as a nerd it was super cool to me. And we can only hope that my new immune system decides to stick, and give me a new lease of life.

When you have a transplant, you always talk in day +1,2 etc afterwards – to mark the days since transplant. My hope is to have no complications above the danger zones of 7,30,45,100 & continue with an abundance of health well past day +3,650.

So again, happy birthday to my new immune system! We just wait out the next 10-14 days in the hope I have no complications.

 

BC

Day Zero – stem cell transplant

Today marks a very important day in my life.

I have my brand new immune system installed today, in the hopes it will rescue my body from failing and gift me with a deep remission of both blood cancers, and a better quality of life.

Can’t say I’m looking forward to it, it has been a long time coming. The hardest part is yet to come. I’m going to be very sick (apparently) for a while after, but I’m getting the best of care here at Peter Mac.

What i’m looking forward to most is the sense of adventure I have lately, wanting to continue doing things i’ve never done before, enjoying my (shortened) life more – working less, laughing loudly. Staring out into the horizon, all that cliche shit.

I’m about to be wheeled off to the Peter Mac ICU, as having two blood cancers gives them cause to have me under better monitoring for a period of time.

See you on the other side!

Sharing my story with video

I did something super ballsy tonight, I made public a video talking about my two blood cancers, my treatment and the realities of the prognosis.

This four-minute video was the product of over 2 hours worth of footage, some scripted, some completely from the heart. It was very confronting to do and I struggled to watch it afterwards, even with the help of a trusty cameraman who skived off work for the afternoon to lend me a hand.

So on Thursday afternoon, when it was stinking hot outside and I didn’t want to go anywhere, I decided to fire up the laptop and watch everything. The intent was to mark which bits I liked and which I didn’t, and flick it all off to a friend to edit for me, but in the end, I figured the best person to tell my story was me.

So today, I learned how to edit video. I cut and edited it myself, and i’m very proud of thI’mnd product.

It speaks from the heart, it’s confronting, real, raw and funny.