I'm Tinu. My name means Love.

About “Everything I was too busy having cancer to say.”

Tinu

For several months I’ve been stuck on the book.

Should I write about being a spoonie with cancer?

Do I write only about my cancer experience?

Who the hell cares about this book?

That wasn’t rhetorical.

I have a practical side and if I’m going to throw serious time and effort behind creating this book?

It has to make a profit somehow. And the best way is for it to sell to actual people it can help.

If no one cares, I thought, could I add all the resources I found to make it at least helpful?

Am I too friggin exhausted still, to be writing anybody’s book?

It’s a lot to consider.

Then today I had an explosion on Twitter.

It was sparked by a polite public exchange, then a very rude private exchange, in which two different people tried to tell me that vitamin/mineral deficiencies were at the root of my illness problems.

(Meanwhile I take a liquid mineral complex daily and am on three prescription megadoses of vitamins and two non-prescription ones.

I have spirulina in my house at all times and I promise I hit my daily allowance for vegetables more often than anyone you know. FOH.)

So here are my rant(s).

Meanwhile, I’m pretty open about being a Christian. Not that it’s anyone’s business but I believe the Bible is allegorically true, not necessarily literally. And unlike the so-called evangelical Christian right, I believe in emulating Christ.

(I choose to believe he cursed a lot. We can go half on AC in hell, DM me.)

People who know me in person know that despite the pain putting me on edge?

I’m a pretty laid-back easy going person until you piss me the fuck off.

Then I can cut someone to the white meat using only my words.

You might find it unreasonable but you have to understand that you are the 680th person to unwittingly abuse us. And staying quiet and polite has just let the cycle of slowly cutting away our dignity to nothing continue.

You all need to see that is how much it hurts when you infantilize sick people and condescend to us.

As if we don’t know to check basic things like nutrition, vitamins and mineral imbalances before moving forward to see if there are other causes or solutions or treatments for our chronic illness.

Don’t you know a full panel CBC workup on your blood will tell you if you are vitamin deficient?

Quite literally the first test doctors do if they think you are systemically or chronically ill.

And most of us have sought out unconventional doctors, including naturopaths, to help us feel better? It takes is forever to find doctors who will truly listen. So of course when we find good doctors? We stay with them.

That usually includes at least a 90 day course of super-doses of medicine?

I’m currently on iron, vitamin D, folic acid, magnesium and B12 megadoses. Which screws up how I take my medications by the way.

Not that you people ever ask 1- if I’d like to share my treatment plan and 2- if I want your advice.

It’s crazy because you tiptoe around all the things I WANT to talk to you about, but when it comes to my health, you think I should bet my life on what worked for your friend’s neighbor’s dog.

Notice that word chronic?

That means we’ve been sick a loooong time. So yeah I don’t hold back any more.

We’re basically professional sick people.

The 10,000 hours you need to be an expert, we have made and then some.

Just TWO years of chronic sickness is over 17,000 hours. I’ve been ill for TWENTY, disabled for TEN. Some of the things you read and send to me – unsolicited! – are based on studies on me and people like me.

Thinking about that made me think – why did I wait so long to talk about all of this stuff?

Welp, I realized, I was kinda too busy having cancer and we now know FIVE other chronic illnesses.

(SDD, neuralgia, asthma, RA, anemia. And chronic migraines, but I’m not counting those until I find out if I have fibro. Long boring painful story so back to the action.)

Five chronic illnesses and all the bullshit that goes with them. BS that I need to talk about more. We all do or the issues in our various communities will continue to fester.

And you know what? I’m not too busy having cancer treatments anymore. (We’re a doctors visit away from confirmation on the cancer status.)

Thunderbolt! That’s what to call the book!

Fuck these six fish in particular

And that’s what should be in the book too.

My brain was constipated because I was trying to force the wrong book to come out. (yeah, ew, I know, shut up.)

Instead?

I’m going to write what flows easily (have I outrun that last metaphor yet? I was thinking waterfalls, rivers, streams…)

And what’s flowing easily now (UGH.)  is “Everything I wanted to say when I was too busy having cancer.”

And the sequel, also already half written is “Everything I was Too Busy Being Permanently Ill to Say.”

The first book will have chapters that talk about being a spoonie with cancer, but will also have topics that are overdue to be spoken about and ranted about in relation to cancer, primarily.

And of course, I’m still going to write about the special challenges of being a spoonie with cancer.

There are a LOT of things that we need to start talking about when it comes to cancer.

The plan is to split them up into three groups,

In the Patreon site, I’ll put up a list of topics if you want to comment on them.

Yes, I’m doing Patreon now that I have a focus. We’ll get to that in an upcoming post.

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