topic Re: An important message for you: it isn't the end. in I've just been diagnosed

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

CaptainAustrali — Thu, 12 Jul 2018 10:05:09 GMT

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.

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

Margaret_CCNSW — Tue, 17 Jul 2018 05:46:23 GMT

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

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

CaptainAustrali — Tue, 21 May 2019 13:56:29 GMT

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.

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

Nic1 — Tue, 26 Feb 2019 08:25:26 GMT

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

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

CaptainAustrali — Tue, 21 May 2019 13:53:42 GMT

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.

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

Cat — Tue, 04 Jun 2019 00:51:14 GMT

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.

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

Lampwork54 — Mon, 29 Jul 2019 21:40:03 GMT

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.

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

CaptainAustrali — Wed, 11 Sep 2019 10:35:01 GMT

"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.

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

CaptainAustrali — Sun, 29 Dec 2019 14:55:51 GMT

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.

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

Lampwork54 — Mon, 30 Dec 2019 10:12:44 GMT

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.

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

Sandrina — Sat, 04 Jan 2020 01:15:36 GMT

Hi all, my name is sandrina, 3 months ago I was diagnosed with lung cancer, I have small cells carcinoma, which means they can get rid of the small cells but they will come back. The cancer in my right lung is moving it’s way around my windpipe, my Oncologist is telling me they need to do chemo straight away I have just finished my 2 nd lot of chemo lost most of my hair after the first chemo. I feel like I am just going thru the motion . I have a family that stresses me out to the brink of why am I doing this ?? I want to beat this, but the more they stress me the more I think I should just give up. The support of my family that said they would be there for me has gone.

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

CaptainAustrali — Sat, 04 Jan 2020 02:00:12 GMT

Sandrina - I can only give you an answer specific to how *I* see the world, and I understand that

a) I might be crazy; and

b) there are many other ways to see the world

But for me .. if friends or family treat you poorly, they either

a) don't love/respect/care; or

b) don't understand

If it's (a) then it can't be cured. I cut them loose and choose to have only positive relationships in my life. If it's (b) it can be educated by clearly and carefully explaining what you need.

The thing about cancer is that it's *YOU* in the spotlight. They are supporting cast. If they can't do their jobs, you need to re-focus and make sure you tackle this fight in whatever way best fits you. (Some people choose not to have treatment - crazy in my opinion - but everybody has choices available --- the main point is that they are YOUR choices. Allow people to help you, influence you, advise you, guide you - but if they only give you stress and heartache - you need to do whatever is necessary to remove that noise while you fight for your life).

If they care, understand or both: they should respect your wishes and help not hinder you.

Just my opinion. Sorry you're in a difficult situation, I had to be very protective of my own mental health when dealing with cancer, and I feel strongly that every cancer patient needs to do the same thing.

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

Sandrina — Sat, 04 Jan 2020 02:15:32 GMT

Thank you, I am trying to get myself in a good place. I don’t want to overthink, I understand my daughter who is 39 who says she sees me but I’m not me, and that she doesn’t want to be around while I go for all my appts. I think she’s scared lost and lonely like I am, but I am also hurting too. My husband and youngest son are bi polar and my other son is a schizophrenic psychosis and I have always looked after them, but now it’s taking its toll on me. I am putting in for a transfer (house) and I am thinking of moving there by myself for my own peace of mind and health. Thank you I will keep my head up and just keep moving.

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

CaptainAustrali — Fri, 24 Apr 2020 04:31:20 GMT

Hi There

My name is Simon. I'm 48 years old now. I hope to live to be at least 60 (because by then, my little children will have grown into adulthood). I have love in my life, and my wife and children live in the light of that love.

It's a real gift, because 3.5 years ago I was diagnosed with pre-terminal cancer.

I'm writing because my timeline might encourage you if you're dealing with the grief and fear of a serious cancer diagnosis (and what cancer is NOT serious?).

September 2016: Diagnosed with advanced tonsil cancer. Starting to spread. 6 months to live without successful treatment. Treatment considered a 50/50 shot unless the cancer was already spreading (but over time discovered the odds were better than that .. on diagnosis I was told my survival was a coin toss at best). For the first week after that diagnosis I was untethered and had no idea whether the cancer had just metastasized.

December 2016 (Christmas eve): Finished treatment. It was an ordeal, I won't try to downplay it, all in all the treatment and side effects were somewhere between Awful and Horrible. But I put my head down and got through it.

March 2017: Post treatment PET scan. I was told "it's inconclusive - there's so much damage and inflammation, the test has no way to differentiate between that and cancer)

May/June 2017: After agonising months of waiting, get the all clear PET scan.

December 2017: First anniversary. Likelihood of recurrence dips slightly

December 2018: Another dip in the likelihood of recurrence. Still having checks every 6 weeks, camera up the nose, physical exam.

December 2019: Three years out, statistically take a major dip in the likelihood of recurrence.

So now I'm waiting on 5 years cancer free, then (fingers crossed) 10, 15, 20. The doctor said I can reasonably expect to live a full life.

Yeah there are side effects, and yeah life is not what it was.

BUT I AM ALIVE.

Maybe your diagnosis is better than mine was, maybe worse. But mine was pretty grim. I got through it. Take heart. You're still alive. YOU CAN TOO.

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

CaptainAustrali — Wed, 05 Aug 2020 23:29:00 GMT

Hey Hey - just a quick update.

The world has gone barking mad, my business has collapsed due to COVID, I'm slowly learning the guitar, and I'm alive even if I don't quite thrive.

I'm approaching 4 years post cancer now. Get it ? I had a coin-toss chance at survival .. 40-60%. Stage 4 tonsil cancer. Six months to live without successful treatment.

Here I am 4 years later.

Take heart from that. No matter how shitty your own personal cancer scenario looks on paper, strive and press forward, don't surrender your hope to this insidious disease.

Anyway, if you have chemoradiation, you'll find that the side effects continue to impact your live even 4 years later, but it's a small price to pay for continued survival, eh ?

All the best.

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

sch — Wed, 16 Sep 2020 01:40:21 GMT

Hi mate,

I'm sorry to hear about your business. That must be really difficult. Good to see that you are still ignoring the statics though.

The statistics are there to be ignored right?

I only had chemo and surgery for stage 2 cancer, so I'm probably not qualified, but I think you're doing amazing.

Each time something else comes along it feels like someone has punched you and you've hit the deck. You find the energy, some how, to pick yourself up again and continue on.

Best of luck mate.

-s

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

Lampwork54 — Wed, 16 Sep 2020 02:39:05 GMT

Hi Sandrina,

Simon and Sch have already written you beautiful replies to your message. They know what they're talking about and who knew we would all become experts in how to beat cancer, recover from it and continue to survive. Critical life skills.

I'm really sorry that your family is unable to support you through this. That's really hard but yes, if you have to isolate yourself from them to get through this then do what you need to survive. Just on your daughter's inability to cope - be gentle. Not everyone is the same. My mother was in a nursing home for 10 years after a massive stroke that paralysed her down her left side. I was the SUPER child! As the nursing home was nearby I would visit her two to three times a day because the first home was a nightmare and they could not keep her provided with a drink. 8 falls out of bed. 4 lockdowns for gastro. 2 emergency blood transfusions and overdosed for a year on morphine cause nightmares and hallucinations. We were able to move her from this BUPA hell hole to Dutch Care and the change in care was magnificent. I am one of six children but I had to take on the care of our mother. I'm not a saint but I did learn that the most painful thing in the world is to see a parent suffering or in pain. It's bone crushingly painful and I have shed many tears over the callous indifference to human suffering that goes on in some of these places. My brothers and sisters retreated from the situation because it was too painful. I couldn't retreat because I just couldn't let my mother down in her time of greatest need. I wondered if my children would be strong enough to go through what I had. Probably not. I still love my children and they are wonderfully supportive but with work, children and time pressures I couldn't imagine them having the time to be helpful. Hopefully, things will get better with your daughter but for now, focus on getting yourself as well as you can and I hope your journey through this is manageable and that you can get through this.

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

CaptainAustrali — Wed, 16 Sep 2020 08:18:41 GMT

Thanks mate, I appreciate the kind words - actually a boost at just the right time. I've been dealing with new stuff .. increasing facial cramps and lumps, and also possibly advanced damage to my teeth, as well as weird cramps in the legs that are hopefully just muscular and not DVT leading to PE, heh ! Cancer is the gift that keeps giving .. but I think we all need to refuse to be defined by our struggles, but rather how we rise above them.

Really appreciate the kind words, buddy. All the best.

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

GaylP — Fri, 16 Oct 2020 04:20:29 GMT

Thank you for this message, it is something I needed to read. Yesterday I was told my breast cancer has metasticised into my spine, and without treatment I have six months.

With treatment I can look forward to 2 years apparently, so I am starting up chemo again next week.

I am in shock, I am angry, I am looking at someone to blame but of course this is no one's fault, not even mine.

Thank you for the opportunity to share with this community and read your stories, they will help me to realise that it may not be the end, although the path looks blurry I have to admit

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

CaptainAustrali — Fri, 25 Dec 2020 10:55:21 GMT

Yesterday, Christmas Eve, was the 4th anniversary of my last radiation treatment. So I've officially reached an important milestone - 4 years out and no apparent recurrence. Thankfully, my statistical likelihood of recurrence takes a pretty dramatic drop now.

I've had a shift in perspective, and for anybody looking for hope after just being diagnosed, take heart from a few things:

1) I continue to survive. You can too. They gave me 6 months. I'm 4 years out and hopeful of living longer.

2) If you get lucky and beat your odds, you're at a high risk of drifting into depression in the post-treatment phase. You realise that 'lucky' isn't a word that sits well with cancer. The disease tries to take so much from you, not just your life. I realise now that I've spent a few years in a bit of a slow decline. The side effects don't help, especially thyroid damage and weight gain. But ... and this is the 'take heart' bit ... beyond basic survivorship, the clouds can break and a little bit of hope can shine down on you.

So yeah, I've felt a bit like a broken old man, just waiting to die. I didn't want to admit that to myself, but now that I'm starting to move forward, I can. I've been depressed, in a bit of limbo, just pegging time until I find out if the cancer will take me.

Now, 4 years out, it's finally sinking in, not just academically, but into my bones, that I may get to live another 20 years, see my kids grow up. I've seen, known and understood that already, but now ... it's gone from aspirational to .. I dunno, the natural state of things. It's sunk in, and I've allowed myself to start moving on.

Healthy living, lose weight, actively pursue happiness ... all of that stuff is creeping back into my life.

So .. if you're here because you're freshly diagnosed and grappling for hope, some kind of anchor .. if you tough it out, and if you manage to beat your cancer, things get better. I think I'm on the edge of coming back to life ... it's a good feeling.

All the best to you, I hope that somebody takes comfort from this - knowing you're not alone, and knowing that even the grimmest odds can be beaten. It isn't over yet, do your best, keep your hope alive as long as you can, and even if it withers - hang in there, the clouds don't last forever.