Too sane for my own good

Back to where we were, here is the post from February 25th 2016

"Had breakfast at Bambi's Kitchen on East Terrace with Ian and Gaia this morning before heading to the doctors. , cheers for the service Vish  I recommend it.
SO.. Update time.
Bringing those people who don't know up to speed, I had a preliminary diagnosis of cancer a few weeks ago.
what had started as abdominal pain(similar to wind/gas) sent me to the doctor who recommended a CT which found a 9.5cm soft tissue mass..
for a quick guide to how large that is its about the size of my fist. there is another mass, and a lesion on my liver.
Of course when you find something like that you need to find out what it is, so i had a biopsy, and the prelim results showed a rare kind of cancer.
since then i have had another CT of abdomen and chest, and a whole body PET scan to check for any additional parts of my body
Fast forward to this morning and I get the results of the PET scan.
First the good news, no evidence that the cancer has entered my blood stream, and the lesion on my liver is cancerous too but external, so fairly easy to take care of.
Now the bad news: I definitely have cancer, Desmoplastic Small Round Cell tumors are very rare, meaning there isn't alot of information about them. Treatment is not as easy as I thought. months of chemo, and then surgery, with no guarantee's. this is now part of my identity, we'd all best get used to it.
My oncologist appointment is tomorrow where I believe I will be scheduled into chemo in the following week, I'll know more tomorrow.
Why am I talking about this publicly?
It's well known that men don't talk about their health, lets change that.
Did you know that chemo has the real possibility to make one sterile?(I looked it up Za, it's a real thing).
Keeping my mental health intact during this very difficult time is going to be a challenge, sharing is something that helps me.
How should you feel about this?
however you want man, everything is valid, disbelief, anger, laughter, whatevs, you do you, I can't be offended by your feelings.
How should you act around me?
Business as usual. No need to change things, I don't expect anything from anyone.
What can you do to help?
Everyone's personality is different, the following informtion only applies to me, and not everyone.
here is a quick list of **Don'ts**
* give me pity eyes
* ask me how I am(its going to be shit for a while, I would rather not have to go through the motions of "fine thanks", or actually explain for the 1000th time)
* ask me how I'm holding up( see above )
* Reassure me that I have this, I can fight it, I will win etc etc. I find these statements more like a type of denial and just plain wishful thinking. The reality is that we don't know how things will turn out, and that's OK.
* say something like 'its gods plan' or 'we go through things for a reason'. i sure as fuck am going to learn a lot from this experience, but that doesn't justify the shit i will go through
* give any advice on how to be cured by your personally idealised notions.(food, quackery, pills, drugs, internet research etc).
Here is a list of **Do's**
* Be kind to everyone, many people suffer in silence, I do not deserve more or less than them because I am being open about it.
* Be patient, I will approach you, or broach the subject with you if I want to talk to you about it.
* Be really patient, I'm compromised emotionally and phsyically, I may not have the energy to be accomodating to your emotional needs.
* Hug me
* vote for a political party who will expand ,not dismantle, our universal healthcare system.
* vote for a political party who will provide a stronger safety net, I'm actually shit scared of losing my job and then not being able to pay rent and bills.
* vote for a political party who will increase spending research and not be led by ideology.
Ok. here is something that I really suck at that I will need help with: eating (healthily). I'm super stressed, and that manifests itself as a lack of apetite.
This sucks because I need all the energy I can get to deal with the impact of chemotherapy. Give me a nudge, come over and help me cook, I get company and healthy food, I'm not keen on people making me meals most of the time(except Annie and Kelly). also not keen on people buying me food.
PS. I have given some people, and will give some people explicit approval to ask me about anything and everything and be an intimate part of my life, if I haven't given you this please don't assume it. I may be open about whats happening to me, but I would appreciate having some friends who are on the outside too.
Lots of love
Samuel."


So yeah, now that I'm two years on I can't believe that was how I felt at the time. How could I have been that sane? I don't think I would react the same way a second time around. I might actually fall apart if I had to do it all again. But at the same time it has also increased my overall resilience to life. It's such an odd feeling and I'll try to put it into words now because trying to express yourself is important, even if you don't always get it right.


I'm both more fragile, and stronger than I have ever been.


In regards to being more fragile: I react easily to stimulus, both positive and negative, like the rawness of life is so close to the surface, like the effort I used to place on being congenial is diminished. I'm more emotional, sort of like I feel more, behaving in a socially acceptable manner is harder than ever.

In regards to being stronger: Discomfort? pfft I got this. Chances of actually dying in Australia from poverty? hahaha. Taking risks? no problem. My drive towards my goals are stronger than ever before, my giving of fucks has reduced so much to be a little frightening sometimes. My acceptance of mortality is comprehensive. I sort of feel like rick as he takes roy off the grid, opportunities will be taken, change is desirable.

A very large part of this which I have mentioned before is that my perception of time has changed. And there is no way I can adequately describe this, but I'll try.

When you feel like you have lots of time, you can put things off till later, we all do it all the time because it's the most energy efficient way to spend our time, I factor mental energy into the equation. I used to not think about time at all, putting myself and my goals on indefinite hiatus. But with the advent of being mortally ill, time was brought into contrast. I'm 36, I have optimistically 25 years left of  solid productivity before life really gets difficult. that's really not enough time for a peasant to change much and I make no illusions of grandeur for my existence, I am a peasant. So I have to paddle, and I have to paddle hard whilst I still have some guts to me, because it can be taken away so easily.

The middle class is sold the a lie that they can be rich, I say no, we are peasants, so work your fucking ass off or be reduced to poverty.

We all should be paddling, the world is sick, I'm working towards a sustainable life, I have goals that not just reduce my footprint but that contribute and I'm working towards them one uncomfortable foot at a time. I hope you are too.