On Wednesday 26 September 2018 at 15:45, I had an appointment with what would become my Cardio Thoracic Surgeon. He is smiling, happy guy who has made me laugh and smile every meeting. I have dealt with him on numerous times and our first meeting was no different. As the meeting unfolded I discovered he was more of a “Smiling Assassin” than a comedic fun guy. Ohh that is a bit harsh – he had some hard news to deliver. 

I had a CT Scan with a contrast dye looking for PSA (prostate cancer cells) on the 10 Sep 18. The results explained to us on 17 Sep from the Urological surgeon (not really written about him yet, will have to think what character he will become – hmmm). I was told I had an incidental lung growth. He asked if he could pass onto a colleague who specialised in lung issues (a cardio-thoracic surgeon) which I of course I said “sure”. 

I was booked in for Radical Prostatectomy on 28 Sep 18, so was madly racing to see Prostate nurses, Sex Doctor (yep really – a Dr that specialises in the fun acts), physiotherapists and Anaesthetists.

All this team to get me ready for a surgery, catheter, then incontinence and erectile dysfunction for some period of time or for ever!! (I should say some of the chats are quite confronting with – “hmm if no nerves are managed to be spared, then the old fella will never rise to the occasion by itself – ever). Who knew (well I did then), it would depend on how good the robotic surgery and surgeon went!! (looking back, some of those meetings were interesting and now funny – always funny when things are working properly).

Pushy Phone Call!

I got a phone call from the “Smiling Assassin” who was calling me on the weekend, and was asking if I could see him on Wednesday but he would like me to get a lung function test and PET/CT scan prior to seeing him (wow what a pushy guy but sounds nice and cheerful!). 

Hmm – ok – sure – I can do that.

We arrived at his office, the Mad Scientist (aka the wife) was with me, as I had learnt my lesson with meeting any new medical people, she is my bodyguard, my protector, she will ask the hard questions I may be unwilling to ask or have not thought of yet.  She also takes more out of the meetings and translates the really big medical terms for me later into nice monosyllabic terms (pun intended).

An example of the Mad Scientists skills, when finding out about my prostate cancer, the report reads and the urological surgeon says “Gleason 9 prostate carcinoma. MRI July 2018 showing peripheral zone middle third posterior left Gleason 3-4/5 lesion…”.

(I look blank at her). The translation comes “the lump in your prostate is cancer and its a scored out of ten, tens bad – you are a 9”  and I would answer “ohhh shit its cancer” as she rolls her eyes back at me. See its great having a Mad Scientist in your corner.

The Similing Assassins Delivery

The Smiling Assassin greats us, shakes hands and is all smiley. He pulls up the scan on his computer and shows the scan. An explanation that the nice lit yellow bits are “hot bits” where glucose is burning up and as I was laying still when they did the scan and prior, we are told nothing should be burning other than my brain (as that supposedly is always working – who knew).  

My lung lump, the lymph nodes in the lung, the lymph nodes outside my lung near my windpipe were all a bit “hot” and working. 

What does it all mean?

Now comes for the pièce de résistance of the “Smiling Assassin” moves.  A diagram is drawn and explained if we have 100 people with this growth, and we have a timeframe of 12 months. Ohh I get excited, I am tech, I love graphs and diagrams and whiteboards. 

Smiling Assassin draws a line from the top of 100 people and it curves down nicely to the 9 month mark – oohhh where is this going, I am concentrating as I know this must be a serious meeting, he is doing a diagram.

He explains If nothing is done and we leave it, all the 100 people will be dead in 9 months. 

Right, ok …. wait a minute…… did you just say that if I did nothing I will be dead in 9 months!!!! What The F#### – come again – wow.

Now the smile – “but that’s if we don’t do anything”. AHHH the heart comes back down a beat or two, ok so now where too?

“If the cancer is only in the lump and we cut it out, you have 80% of living past 5 years” – ok heart beat starts to come down a bit – thats good odds, I am young, fit, I got this. 

“If the cancer has spread to the first lymph node still in the same lung lobe  but no further (the closest ones) then more like 30% of living past 5 years”. Hmm not as good, but a fighting chance.

“If the cancer has gone to lymph node up outside the lung up near the windpipe branch, then we are looking at 18%”. WTF – this is sounding like doom and gloom again and you said that one was glowing – ahhh shit, shit, shit – panic – breath.  He did comment about Chemo and Radiation at this stage, as increasing figures but I would need to talk to others (my brain was not working that well then).

All of this finished with a, “let me call your Urological Surgeon, as I think prostate cancer is the least of your issues right now, and let us get you in for a EBUS Guided Subcarinal Lymph node biopsy” (a what???)  Mad Scientist quick translation -” shove a probe down your throat while you sleep, and take core samples of your lymph nodes near your wind pipe branch to see if they have cancer” – ahh got it, makes sense.

So when do we do this? – ohh two days time, Friday!!!!

The shock

Now as I am writing this a long while since it all happened. I want to add in lots of humour to make things nice, but that is not what transpired, so the next bit is brutally honest. If I did take that nice path, I will just enforce some of those images we see on TV with cancer people wearing a bandana and smiling. As I know, it is a nice palatable image of what “all” chemo people look like – but trust me, it is not all the time truthful or honest.

Raw Emotion

We left his office, we held it together, I tried not to look at the Mad Scientist as I could feel the emotion, we paid the bill, got into the rickety lift (why they don’t upgrade it I have no idea). The Mad Scientist hates that lift. She has a slight fear of closed spaces and it does shake a lot. We tried to hold it together but a little tear crept out, we awkwardly laughed about how uplifting that meeting was. 

Lucky for us, I used to jog around the area and knew a park was across the road and a good park bench waited for us. We made our way over and sat down. Then we just cried/sobbed/hugged and cried some more. Questions out loud and internally asked, that we could not answer. I can not ever remember a time I have ever cried like this, I have never been a crier.  

Ever since I was a kid, my family has dealt with the death and sickness within our extended and nuclear family. I get the cycle of life, what it means and that it what it is. I watched my Gran slowly fade away of Motor Neurone Disease when I was 11, my Dad die of an unexpected heart attack when I was 18. I have lost friends to car/motorbike accidents and frustratingly sad, friends who have suicided. My mum is a breast cancer survivor.

So it is not that I don’t get the sickness/death shit – just not at 44 and not when I feel healthy.

This is different, this is unexplained shock, despair, helplessness and general disbelief. The thoughts race – What about the Mad Scientist, what about the kids, I won’t see the kids turn nine, watch them grow up, what about the guide dog puppy I am raising, what about work, what about ….. shit what about being alive for more than nine months, what about being alive past 5 years, I wont make 50 – F###!!!

We composed ourselves after a long while, walked back to our cars (yep we met each other there in different cars – not a smart move – I won’t do that on big news days anymore!!) and drove home. On the way home I made a phone call to a close mate and explained that I think I just had the most shit news I had ever received, even worse than finding out I had prostate cancer!! We both agreed it was the most shit news (we managed a laugh as well, at how shit it was – thats why he got the call – I knew he would make me laugh).

Rest of the Day

The rest of the day I will not write about in detail as it is too raw.

It is when you go home and tell your loved ones you have a serious cancer , you may die soon, you don’t know, but the stats are not looking great.

Not saying all cancers are not serious, but life expectancy rates over five years vary a lot. If we look at mine, in Australia today prostate cancer survival past 5 years is at 95%, Lung Cancer is at 17% – just saying, which stat looks real serious.

Even now it is too raw, writing the words “you may die soon” are the trigger. I should accept though, I could be emotional, as it is 0400 in the morning, a day before the 9 month anniversary – strung out and awake – ohh that is thanks to our mate “Dex”.

Footnote:

As I explained I am writing this recount after the event, as the 9 Months is coming up soon (next couple of weeks and I have done little edits since then). This blog is dated it when it originally happened, so it flows when someone reads it from the oldest to the newest, but will put a link to it from a fresh blog on the anniversary (tomorrow).

To get the detail and remember the emotion (not that I needed to) I did go back to my original penned journal and re-read my thoughts and feelings. I cried again while writing this (and even when editing again, a couple of times), but I should confess right now I am/have been strung out on Dexamethasone thanks to Radiation Pneumonitis. Currently I have scanxiety as my PET/CT and Brain MRI were inconclusive so more tests later. An emotional time and waiting game.