Movember 2015: John's story.

Today my Father-in-law, John, has kindly shared a little of his story with prostate cancer for Movember. I hope his openness will encourage more men to talk about this and the other issues Movember covers, and get the checks they need. Thanks John.

John is also raising funds for Movember. 

You can donate here.

The Movember Foundation focuses on raising funds for programs focusing on prostate cancer, testicular cancer, mental health and physical activity.  

*****

It is now 6 years since being diagnosed with prostate cancer.


Back in 1995 I was given a full check over by my then GP including ECG, listening and peering into every orifice he could find, checking reflexes and all body functions and reactions, then blood tests for everything else he could think of. Apparently this included a *Prostate Specific Antigen (PSA) test, which at that time I had no idea what it meant - a reading of 1.2 and of absolutely no concern.

Since then my GP sold his practice and I inherited my current GP. Apart from a bad mix of cholesterol, sun damaged skin and the odd pulled muscle I have not required her services.

My new GP never advised, discussed or recommended anything to do with prostate. It was only on my instigation that she included a PSA test in with my 18 monthly cholesterol check, commenting that it might only open a Pandoras box and decisions would have to be made. The results came back, PSA - 12.8. It was out with the rubber gloves and a better check this further. A referral to a urologist or a radiographer was required, and it was up to me who to see. 

I chose the urologist - more rubber gloves and he recommended a biopsy. 

'A' biopsy was actually 24 samples.

So after 64 years of not having to be in hospital the procedure was undertaken with the result being 14 samples proving positive with a **Gleason Score if 7. Based on that he advised surgery to remove the cancerous prostate as first line approach. Dumbfounded at receiving that information I agreed knowing there would be some after effects and possibly some ongoing problems or even permanent ones. 

It was now March 2010.

Waking up in the hospital ward to the news all went well, margins were clear and they were able to save one bank of nerves. Apart from various tubes coming out and going in to parts of my body they had never been before, all was OK. I recuperated well enough and then having to wait some weeks and then a few months for more PSA checks.

The PSA had not reached optimum minimal levels ("oops must have missed a bit") and I was referred to a radiation oncologist.

Seven weeks of external beam radiation in Brisbane five days a week, then wait six weeks to check PSA again. Still not down to optimal minimal level.

After another two, three monthly checks and it had stabilised to a 'satisfactory' consistent very low reading.

All good at that for a couple of years then about 18 months ago PSA started increasing so it's a monitor to see what happens.

Having increased to six times the previous 'satisfactory' very low level my oncologist tells me we have to wait it reaches a level detectable by the latest scans available before further treatment can be determined. 

Fortunately unless PSA checks were done to let me know there are cancerous cells somewhere there are no other symptoms to let me know there was anything wrong.  None of the possible real problems eventuated post surgery and no after effects of radiation so life is good considering where I might be not having had the surgery. 

Thanks to associations like Movember collecting donations towards research, new treatments and detection techniques are continuing to be developed, so by the time I have to start worrying (which my oncologist says will be a few years yet) there may already be better treatment/control or even be close to a cure for my condition.

John.

John is raising funds for Movember. 

You can donate here.

Huge thanks to John for sharing his story. His is one of the many reasons that organisations and events like Movember are so important.

For more information on prostate cancer check out: 

 

Movember
The Prostate Cancer Foundation of Australia.

Cancer Council of Australia

*Prostate Specific Antigen (PSA) Test: The result shows whether there is an increase in this specific protein. Depending on the result, you might need further investigation by a specialist. A high PSA test result does not necessarily mean cancer. Prostate diseases other than cancer can also cause a higher than normal PSA level. (Source: The Prostate Cancer Foundation of Australia)
**Gleason Score: A way of grading cancer cells. Low-grade cancers ( Gleason score 2, 3, 4) are slower growing than high-grade (Gleason scores 8, 9, 10) cancers. The pathologist identifi es the two most common tissue patterns and grades them from 1 (least aggressive) to 5 (most aggressive). The Gleason score is given as two numbers added together to give a score out of 10 (for example, 3 + 4 = 7). The fi rst number is the most common pattern seen under the microscope and the second number is the next most common. (Source: Cancer Council of Australia)

This one's for you.

(My desk. A little bit shabby, a little bit florally, and a little bit FUBARy.)

I'm writing this for you. Yes you. Don’t look so surprised. This one is for you. To read and take from it what helps. To take from it what gives you strength. To take from it what ever you will that makes this day easier. Or the next, or the many nexts to come.

You’re here. Right here. Right now. Reading. In the midst of the storm. In the midst of the pain, or the worry. In the pause. The as well as possible day. The day which fluctuates from good to bad and back again. You are here and you are doing this. You are reading the words that are meant for you.

You made it through today. And yesterday and all the days before. Even when you thought you couldn't, you did. You did it after the tears. You did it after the pain. The despair. The fear. The lost ways and foreign paths. You did it.

You thought you couldn't and yet here you are.

Reading.

Breathing.

Sitting.

Lying.

Here.

You think you’re not strong enough and yet you've faced each day. You watched the minutes tick over. They stretched out, slowed by pain, by nausea and exhaustion. Slowing further as you sat and waited listening for the next tick, the next number to flip over. A tangible something to tell you that time is moving. That the quicksand is a trick of the body and the mind. Until you could finally say, “This day is done”. And life begins anew. There's a chance. A possibility. A hope.

You are up and you are going when the days and the weeks and the months and the years have tried to beat you down. You are tough. Tougher than you could ever have imagined before the change.

Bodies break. Genes turn on. Circumstances collide. And life becomes hard.

You've climbed mountains and forged wild rivers created by bodies and systems and life. You've made it through all of them.

When the voice said “No”. “No more.” “It’s not fair.” “I can’t do this.” You found the path. It was different each time. Shifted left and right. Twisted and split. Sometimes you didn't even know you’d found it until after the fact. You were there, and then you were here. The path was traversed while you were busy contending with the storm.

And here you are. Today. Right here. Right now.

These words are for you. To remind you of your abilities. Of your strength. Of you. To remind you of all you've achieved, in all the days up until right now when you read these words. To know that the best predictor of future behaviour is past behaviour. Your behaviour. That got you to here. You. No one else. You made it. And you’ll make it again. And all the agains.

These words are for you.

Michelle

'Cause I only have one second, this minute today

I can't press rewind and turn it back and call it now

And so this moment, I just have to sing out loud

And say I love I like and breathe in now

And say I love I live and breathe in now 

Same Shit Different Day: Snippets of a Chronic Life

Today I collected my pee in an ice cream container and threw up in the shower. I repeatedly scribbled on an A4 piece of paper which asks me to record the intricacies of my bladder: time, volume, and delightfully, leakage. Yesterday I was buried half under a doona, watching the inside of my eyelids as much as the sharp light emanating from the screen on top of the tall boy. Recovery mode from Friday’s sojourn to ED. A deep black bruise resides where the cannula was inserted. And square red welts and split skin remain to remind me of the 12 lead ECG used to ascertain that my heart was indeed controlled by a dual-chamber pacemaker. I sit here typing, knowing, there’s not a part of this paragraph that I could not have written at a hundred different time points over the last 9 years.

Same Shit. Different day. Maybe I should get that tattooed on my forehead. So every time I'm asked how I am I can simply point to my forehead and get on with my day.

Sure some shit has changed. I am no longer set at a steady 38C every day. Now I vary down to 35 and up to 38 depending on the fickleness of my body, or if I have just consumed a hot coffee, or a cold glass of water. Variety is the spice of life after all. And lying on the couch on a 40C day in four layers of clothes and under a blanket because you can’t stop shivering is always a conversation starter.

But all in all I am still the same. Sick. My most pressing symptom may vary, but I continue to be unwell, have little clarity on the why, and spend a large portion of my life in the medical system.

The shit is still the same, only now it’s 2015 and not 2006.

I was going to write a post about my latest ED visit but there are others in my back catalogue (here, here) that cover things. There was a distinct lack of prisoners, prison guards and police officers this time, which is a little disappointing. Nothing like hearing about assaults and stabbings ad infinitum as the patient behind the next curtain is asked the same questions repeatedly. Matter of fact discussions about makeshift weaponry and a clear desire not to be a rat are elucidative. A whole other world laid bare through a thin blue curtain. But this time my voyeuristic nature is not to be sated.

There was the usual song of the ED. Copious vomiting a few curtains down. The doctor trying to organise radiology after 5pm on a Friday in a rural hospital. HA! Good luck with that. And more vomiting. But little new to write about. It was a Friday eve and all was quiet in the ED, nary a drunken or ice-addled mouse could be heard. There’s a first time for everything I guess.

We went through the motions. Me through my monologue, while Mr Grumpy played the part of the Chorus. Showed the letter from my cardio. Waited patiently through perplexed looks. But eventually the fluids flowed and foul potassium drinks were consumed. Exhausted, chest pain back down to bearable and home once more. Nothing to write home about. Nothing overly exciting or worrying. Ops Normal.

Two parties missed. Much wilting. Much of the usual. “There’s no Vertical Michelle today, is there?” asked rhetorically as I lie splayed on the bed. Burning up. The virus that isn’t a virus and a body that decides to act like it’s fighting all the same. I lie, in much the same position as when we got home from the GP’s five hours before. I’ll continue to lie there hours after the party we are supposed to be attending is long done.

No great worries. It’s the same shit. White noise.

I lay in bed yesterday watching old episodes of Supernatural. Mouth-breathing. Sleeping. Asking Mr Grumpy to listen out when I worked up to a shower. Listen out for the tell tale thump. Just in case.

Today I sit typing, still in recovery mode. Like last time and the time before.

I checked out my vomit to see how many pills were lost and squished it all down the drain with my big toe. Poured myself out of the shower and onto the floor. The tiles cool against my skin as I lay for a while, half on the bath mat and half on tan ceramics. Looking up at our cracking ceiling and dusty heat lamps. Air dried more than towel dried equals energy conserved for other tasks. Like dressing and taking a couple of extra meds to replace the half digested ones. Drag myself together and get on with the day.

There’s nothing special about today, it just is. Another in a long list. A long list of more to come. It just is. This is my day. Today, and yesterday and tomorrow.

Life threads through it.

I talk to my son about eating Dagwood Dogs at the local agricultural show. His realisation that they are indeed foul, but their consumption a right of passage for every Australian teenager. Plates of Vegemite toast arrive alongside water and coffee. Macarons sit on my bedside table, procured by a husband who goes out of his way to try and make it easier. The scent of fresh mown grass floats through the window. My youngest heads to his job at the local Fish and Chip shop, saving for his trip to Vietnam. Rain pours and thunder crashes as the weather turns. Freyja runs in to lie safe on the rag rug next to the bed. Periodically her head appears next to mine. A snuffle to check I'm there and still breathing, before curling up again. The smell of wet dog makes my nose wrinkle, but is comforting all the same. The days merge. And the minutia of life weave through illness and pain holding it all together.

In a scene from Frida:

Diego Rivera: I'm here to see how you are. How are you?
Frida Kahlo: Tired of answering that question. Otherwise, like shit.

Still love that line.

Same shit. Different Day.

I sit in bed again and type, the head piece I made for the missed Halloween parties on the weekend woven through my hair. My family give one quizzical look before continuing on with whatever they were doing. Freyja comes to investigate. Her head wiggles under my arm lifting it repeatedly until I stop what I'm doing and give into her demands for a pat. Courtney Barnett's stream of consiousness rolls out from my laptop. "I'm not that good at breathing in" persists in my head long after Depreston and Pedestrian At Best.

Same weirdness. Different day.

Life is shit, weird, cannulas, Dagwood Dogs, and floral headpieces.

It’s time to collect my pee again.

Michelle