An important message for you: it isn't the end.

[CaptainAustrali]

In September 2016, I sat in a white hospital office, with a young asian doctor saying how sorry he was.  I was 44 years old, and he had just told me that without successful treatment, he expected I would be dead in 6 months time.

When I first got sick, I became a prolific reader of any and every piece of online intelligence I could get my hands on.  I liked credible scientific sources like pubmed, but also forums like these (especially when wanting to guage side effects of treatment and other personal experiences).

I won't re-hash "My Story", I'm not here for that.  I just wanted to write to YOU.

I sat in your chair, I read through all this stuff, grappling for some kind of hope to hold onto (I have 3 quite young kids).  I was trying to find ways to understand and move forward, and ideally .. to fight.

I just wanted to tell you:  it's not over.

Whatever the situation, however grim, you're still here.  I hope you win your fight against cancer, and if you don't, I hope all of your remaining days have some touch of hope and ideally happiness in them.

Cancer tries to rob you of that.  It's the dark reality of the disease.

You can be hit by a bus and die, and every day leading up to that point, you lived your life untainted by the worry and fear and isolation of being hit by a bus.  It robbed you of your life, but not your hope, your dignity, your sense of place in the world.  Cancer isn't like that, it doesn't just try to take your life, it wants to eat away at everything.

Don't let it.

I was given 6 months.  My disease was advanced.  I was in grim, mortal peril.  I went through awful, gut-wrenching treatment.

Today there is no evidence of cancer in my body.  Yes, I live with a fear of recurrence, But I also live with the hope of living at least another ten years or so (it's absolutely paramount to me, that I steward my children into adulthood without subjecting them to the grief of a lost father).

When I think back to that hospital room, and those first days and weeks, and how .. adrift I felt .. I wish I could go back and coach myself a little.  But I can't.  But maybe I *can* help you.

Don't give in to the fear and anxiety, find a way to accept the things that you can't change, so that you can squeeze all the happiness available to you out of whatever time you have left.

(I think that actually applies whether you have cancer or not).

But yeah.  Six months.  And now I'm sitting just shy of 2 years post-treatment.  At that 2 year mark, my statistical risk of recurrent cancer drops dramatically.  There's no guarantee that your treatment trajectory will follow a successful path .. but however things land for you, it's largely outside your control.

What you CAN control is your short-term choices.

Try and enjoy the people you love, make the most of them, and if you can .. have a little fun.

Don't let the fear knock you over.

[Margaret_CCNSW]

Thank you @CaptainAustrali.

Powerful words for those who have arrived in this community seeking support. It's great to have you here.

Margaret

Online Community admin team

[CaptainAustrali]

If you're here grappling with the "I have cancer ?!" experience, before you get into the nitty gritty, I think it's important to recognise that you're still alive, and although you're afraid .. numb ... angry ... grieving .. depressed .. (or any combination of these), it's worth finding a stance that is a bit protective of your mental health .. and recognising that it's not GAME OVER just yet, you're still kicking, you're still a viable passenger on Spaceship Earth.

I don't know what your situation is .. but  .... they gave me six months to live.

I have 3 small children (my youngest was 3 at the time, THREE YEARS OLD !), and they gave me six months.  I had a chance at treatment, but if it failed, I needed to 'tidy my affairs'.

That was more than 2 years ago.  Today I'm cancer free.

Six months.  40% chance of survival.  In the clear.

Those words shouldn't mix together, but I'm bloody glad that they do.  And they can for you.  So before you deep-dive into your numbers, wrap your head around your scenario, start to deal with all of the horrible, scary, devastating things that cancer can bring along as fun +1 guests to the party ... just remember .. you're not dead yet.  

Between now and the end, there's potential for horrible suffering, sure.  

But also for love.  Joy.  Indescribable sweetness.  

Find those moments.  Anticipate them, cherish them.  Don't forget to do that.  Please.

GOOD LUCK.

[Nic1]

Thank you so much for sharing your story - it has given me comfort and also some perspective and a reality check as I’m taking the first steps on my cancer journey... 

Thanks again,

Nic

[CaptainAustrali]

You're reading through "I've just been diagnosed", which probably means you're grappling for some kind of anchor, some kind of context that will allow you to assimilate cancer with the world-view that you had before you were diagnosed.

As you deal with your disease (and read through these forums), you'll find people who've adapted to cancer, even learned important lessons from it - verging on the quasi-spiritual.  Maybe those messages of hope, faith, love are useful to you, maybe you're not ready for them.

My advice:  just move forward.  Don't dwell on the cancer too much, distract yourself, live your life, don't allow the cancer to take more from you than it already has.  It has contaminated part of your body, but it also wants to contaminate your mind and spirit.  Don't allow it.

Just find an anchor and get through the fight.

Here's the only anchor I can offer - my first posts here would have been in/around September 2016.  I was researching side-effects for cancer, trying to wade through the good, bad and indifferent information I was finding out there.

In 2016, the gastro-enterologist who diagnosed my cancer (who had a secondary specialty in oncology) assessed that without treatment, I'd be dead in 6 months.  The disease was advanced, too big for surgery.  It started with the tonsil, then abutting the jaw and soft palate.  It would soon restrict my breathing.  Chemoradiation was my only hope, and since it was in local lymph nodes, they figured my odds of cancer-free survival at about 40-50%.

44 years old.  Father of three.  My youngest just about to have his third birthday in December..  What a mind-fuck, am I right ?

And here i am.  it's almost 3 years later.  A lot has happened, a lot has changed, BUT I AM STILL ALIVE.

I still carry such a wellspring of love in my heart for my three little boys.  When my first son was born, he taught me how to better love my wife .. the love you have for your child is unselfish, the love you have for another adult has at least some element of transactionality to it .. "I'll love you .. AS LONG AS .. you don't betray me (or whatever)"

I am still alive.  I'm even starting to move back out of 'cancer limbo'.  I've started to learn the guitar, am reinvolving myself in my business, plugging back into the world.

And you know what ?  Sometimes a week or more might drift by and I don't think about cancer.

When I was where you are NOW, I thought about it pretty much every waking moment.

If you are frightened, bereft of hope, grappling for some way to move forward - maybe take a piece of that... 

... my odds were shit.  I'm still alive.

It's not game over yet.

I just wanted to report in, as I'm 2 years into my personal overtime, and I have every reasonable hope that I'll live another 20.

OMFG I am so excited at the idea of watching my little sons grow into manhood.

I hope they'll be better men than me.  I'm sure they will.

Good luck in your fight.

[Cat]

Thank you. I have just been diagnosed and the most fearful part is not knowing how long I have left. So much to do, so many grandchildren and and and.

[Lampwork54]

Thank you for your excellent post.  It is truly inspiring and correct.  

Bad things happen but it's how we deal with them personally that is important.  I think everyone wants to fight and give ourselves the best chance possible.  We live in an age where there is so much information at our finger tips, we have to use it.  My surgeon told me not to look up my particular cancer as it would be bad.  I looked it up.  Knowledge is power.  It was bad but I also found stories of people who made it through it and that inspired me.  The knowledge gave me information to make good choices in the initial stages which is where I am right now.  

No one knows when the end is coming or that bus that's going to hit us wil arrive.  We all have today though and we can make it the very best day ever.  

[CaptainAustrali]

"We all have today though and we can make it the very best day ever"

I think there's massive wisdom in that truism - at any given time, in any given moment, you have the absolute power to decide who you are.

The past, it's just an illusion, a tapestry of experiences that doesn't have to have the concrete hold on you (that it no doubt does). 

The future is also an illusion, it's the 'now' just waiting to be born.  Fretting over the future is just a mis-spent NOW, and we, none of us, truly know how many 'nows' we have left.

The 'now' is so important, so crucial, and so often overlooked as we glance too heavily forward or backward, so often wasted.

We're still alive, we still have now - and we have the power to colour those moments as we wish.

Even in our deepest suffering, we can still laugh or smile, we can still touch somebody's hand in a compassionate way.  We are alive and blessed, and can choose to live our best selves from one moment to the next.  Even if we're dying, we have choice in how we face up to that.

I think cancer tries to steal that immense potentiality that is wrapped up in the NOW, by destroying our hope, by unsettling us and robbing us of our sense of place and permanence.  But permanence is an illusion, none of us and nothing we know is permanent.  What matters is now, and what we choose to do with it.

It doesn't matter if you're newly diagnosed, or have been fighting cancer for years - it's insidious and it does try to rob you of your hope.   But maybe even hope is an illusion, because it's all wrapped up in the future - something that is completely outside our control.

It's the NOW that matters.  We're still alive.  We still have time.

Don't let cancer destroy your now, and all those little future nows that are lined up in front of you.

If you can, strive to make them beautiful.

[CaptainAustrali]

Just an update.  

The anniversary for my treatment ending is Christmas Eve (2016), so I'm now 3 years out from that whole nightmare of diagnosis to treatment (the period AFTER treatment was actually the worst, with all the accumulated symptoms and side effects).

Doing reasonably well now, although I've suffered massive thyroid damage from the radiation, and it didn't get picked up until late in the game, so I've had some pretty serious weight gain that complicates my general health overall.

I get spasms in my face and cramps in my neck, and I'm having a scan on the 3rd of January just for vigilance.  The 3 year check went well, but I was a bit alarmed about a small nodule in the side of my neck .. the ENT/Oncologist said it was nothing to worry about, but agreed to conduct a scan.  Touch wood it'll be all clear.

At 5 years they lose interest of you, the doctors exact words were, "if you hit the 5 year mark, it isn't coming back"  (not necessarily completely true .. and you do carry a predisposition for new types of cancer after all the toxins etc that have been flooded into you via chemotherapy … but comforting words nonetheless).

SO yeah .. went from that white hospital room and the sorry doctor .. to 3 years later just having given my 3 young sons a very lovely Christmas, and an awesome birthday party for my youngest who turned 7.  Took his entire class to a place called "Inflatable World" where the little tykes could bounce around on massive castles, jousting arenas, all kinds of stuff.  Paid for everybody, so it cost an arm and a leg, but hey, if you're alive and well, why stress out about money ?

A couple of years out of treatment, I got a dog for my autistic son (which I slightly regret, as it turns out to be MY dog, and I don't have the appetite to look after an energetic puppy), and started learning the guitar.  I've progressed from woefully bad to just bad, which is good.  I can play a few songs that actually sound somewhat like songs.  So yeah.  It's not over yet.  Choose life, go about it as if you intend to survive and thrive.  Even if the overall result is a bit of a mixed bag, taking that positive outlook will mean you FEEL better either way.

[Lampwork54]

Hi Captain Australia,

Great to hear your update.  3 years is good.  It must be wonderful to be there for the birthdays of your boys and even getting lumbered with a puppy can be joyful.  I hope the dog becomes your constant companion.  I couldn't imagine life without my dogs.  They make me smile at least 10 times a day.  My bees make me smile about 5 times a day when I go and visit them as I'm like a new mum with a big brood.  Always checking that they're doing their job - as if they need supervision!  You do sound as if you're surviving and thriving.  Very brave taking up learning guitar!  Hope it goes well for you and either way - it brings you comfort.  

I look back on this year and know it was a really tough year in many ways.  Yet, we're still here and yes, it's not over yet.  I'm off to QLD at the end of the week with my husband, eldest daughter, son in law and two grandchildren.  We're staying at the Greenmount Hotel which is right on the beach itself.  I'm really looking forward to the trip.  When we get back, I start fittings with the Dental Department to have new dentures made that will take about 3 months to complete.  Lots of swimming, fun in the waves, long walks and good weather.  

I wonder if this has all changed me as a person.  I feel much more anxious - all the time.   I now tend to get even more stressed if I know I have to be around people for any length of time.  I have lived in a silent cocoon healing from the treatment and have kept myself quite separate.  Christmas was hard because you're around people and eating with people which adds another level of stress.  I can eat very little still and it takes me a long time to eat anything except yoghurt.  I have never felt time drag ever before but in the last few months I've struggled to get through the very long days.  I have taken up drinking.  I figure not drinking didn't stop me getting cancer and drinking now might numb my feelings a bit.  (I say that and have had 2 toblerone cocktails in the last 10 days).  I aim to get better at drinking.  I had a glass of muscato tonight and that's a huge step for me.  43 degree day helped me to justify that it might help.  It was quite refreshing and sweet.  I went to a party recently for my son's birthday and all his friends knew I'd had cancer and came to talk to me about it.  I absolutely hated it.  I wished that no one knew but that's not possible as my son probably needed other people to talk to.  I stayed about half an hour and had to go.  It was terribly uncomfortable.  

These are just a few changes I've noticed.  I guess I need to work through them.  I'm not really taking up drinking I think.  Just trying to find ways to make it through a day.  

I loved your update Captain.  Thank you.