Image
Posted on by 8 Comments

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

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.

Being a spoonied should earn you a PHD

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,

  • things I wish I knew going in (resources, tips, what it’s like and how to handle certain things,
  • things I wish I had the energy to say to people (rants, gratitude, how I want to be treated, what was so great & what sucked)
  • odes to caregivers and loved ones (self explanatory)
  • cancer’s unexpected gifts (basically a bunch of emotional stuff that happened while I had cancer that made me feel more connected to my family and helped me become a better human.)

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.

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

  1. Your words reached the very frustrated part of me. The part that has had FM for 13 years now, the part that is housebound with CFS for three years now, the part of me that will be seeing health care professional #28 in three years next week, the part that is scared and tired, so very, very tired. Thank you for your words because honestly not much reaches that part of me and it’s nice to give it a voice once in a while. You’re an amazingly talented writer and I just wanted you to know you reached someone with this post. I’m sorry, truly, for what has come before you to cause this post to happen, and I can only pray that your health will get better and better with each passing day.?

    Reply

    • Wow Mishka. It’s been a long time since I’ve had such a beautiful, heartfelt reply from someone I don’t know IRL.

      Thank you so much for your compliments. I’m so sorry to hear what you’re going through. I hate that we’re both in this club but I am so very grateful to cross paths with people like you because of it.

      Please stay in touch?

      Reply

  2. Aaahhhhggggg!

    That is my reply to this post. The frustration. It must feel good to vent.

    Interestingly, I do not get bothered by people (regular people) suggesting things to me. I think, “Oh – that’s nice…there is this whole back story I am not going to get in to – but that’s nice.” I get bothered when so-called experts use me as an experiment. “Let’s try this, let’s try that.” I had a talk with someone the other day and said,
    “Yeah – it would take a real expert in chronic migraines to help me sort out what exactly I should try eliminating now – because I’ve tried just about everything.” Now, this person is not going to come back to me unless it is a really good, researched suggestion.

    I get tired of researching. I get tired in general. If some Israeli company is coming out with a new med and someone sends the article to me – great. I am contending with, maybe, 1/5 of what you contend with. I think of you often. I am on my 25th or so day of straight pain on the right side of my head. Kind of knife-like. And I think, “But what if I had this condition, or that condition?” I saw someone coming out of my acupuncturist’s office totally immobile, with two caregivers. I think, “I am lucky. Appreciate that.” Maybe this is part of being a “professional sick person?” Lord knows how you do it. The “perpetual pep talk” is something I’d love to hear about. How DO you do it each day? What are the pep talks, the tricks? The mental game can be the hardest sometimes.

    So back to your frustration: I am really curious what’s behind it. Just like I get frustrated with supposed experts who experiment on me. I feel my trust is violated. So, now I set expectations and boundaries up front. Their actions are – I guess – a desire to help. I have to raise the bar for them verbally from the get go. It’s almost impossible to do this with normal people, unless you know them pretty well. And maybe that is what it’s about. The feeling of entitlement? To give you suggestions?

    And another question I have is – devils’s adocate: When DO you want suggestions? Like, never? Sometimes? When you ask and only then?

    These are all interesting angles to explore for your book-or not…that may have been a suggestion! Hardy har.

    Ps I would love to see the book be about chronic illness in general and the 170,000 hours. What you know, what others should know, the high points, the low. There was this big expose on the suicide rates of former pro football players that Bryant Gimbel did. There is similar research on chronic illness and suicide, but with less fanfare. Again… just ideas: https://www.theguardian.com/society/2011/aug/23/suicide-chronic-illness-study

    Reply

    • I love when you comment, first of all Kathy. I think the link is why it went to the approval queue. Weird.

      Second, every spoonie isn’t bothered the same way about the same thing, or at all. I readily accept that some people just don’t mind.

      I think with me, the reason has a lot to do with

      1. Usually they aren’t really suggestions. They’re thinly veiled judgements. “Try showering in hot water every day.” Oh thank you. So I guess this is dirt on my skin, not melanin? What does that even mean? How do I take that as someone having good intentions?
      2. the way people are Already speaking to me differently. Usually there’s already a disrespect there. In their eyes I’m too fat, taking up too much space. Which, I get to take up as much space as I please. And my illnesses made me fat, thank you. I was 100 pounds lighter before one specific year long treatment and drug regimen. Or they verbalize that I don’t need my cane.
      3. I’ve been going through this for TWENTY years. I didn’t mind at first. I didn’t mind when people treated me differently as a black person or as a woman at first, because I used to to my advantage. But the trouble with me letting it go is that this is what the last person did. They knew that this person didn’t mean any offense so they let them keep treating people this way. It gets to the point where, no, not okay.
      4. I also get the people who DO mean harm. To compare is to racism, these are the people telling N word jokes not because they think it’s harmless fun, but because they’re testing for where they can find other racists like them. I’ve been told I’m probably getting them more because I’m a black woman. Whether that’s true or not, it’s happened often enough that I can spot them. The solution they will gently offer will involve me giving them money. Or on another occasion I had to explain some other thing about disabled people, like how it’s not okay to key the car of someone they don’t think looks disabled. They offer the advice as if they are talking to an undisciplined child.
      5. It’s also VOLUME. Not a day goes by when someone who is basically a stranger offers me a suggestion so basic that it’s like – any person with common sense would do that. “Have you seen a doctor?” “Well we’re in a doctor’s office. And I told you I was diagnosed 20 years ago.”
      6. Finally? It’s the cancer thing. People get particularly mean with their “suggestions” when they know you have cancer. People say to me “you realize you probably did this to yourself.” “There’s a cure for cancer, they just don’t want you to have it.” “have you accepted Jesus Christ as your Lord and Savior? Because you’re probably cursed.” “Have you tried praying more, the Lord is your strength.” “Chemo is probably going to kill you. Have you thought about not doing that?” I was already getting venomous suggestions that everyone seems to want to hide because this “good intention” thing. I’m expected to say thank you. I think these types of suggestions are abusive. Others disagree.

      So when would I like suggestions?

      It varies. When I’m visibly struggling is not a good time, and it’s the time most people pick.

      Also. JUST ASK ME. If I want suggestions, I’ll say yes. I’m covering this in the book. I’m more frustrated about the fact that people want to just vomit medical advice all over me, and the way they do it, than the suggestions themselves so far.

      So much of this could be solved by people just saying “do you mind if I make a suggestion?”

      And friends can suggest things. Real friends not people I’m acquainted with, on or off the internet. And privacy.

      Ask me in private. Don’t do it in public, phrased in a way that can come across as condescending or humiliating.

      Also when you’re a spoonie, suggest whatever you want, whenever. You know where I’ve been and you know how to talk to me like I’m not a five year old child.

      And yes, I want to write a whole separate book about chronic illness. The suicide rate is climbing too, with denial of pain medication from the non-working new CDC guidelines. Thanks for the link!

      Reply

      • Dying over Anabelle’s comment. Sense of humor is so critical.

        Yes – the stuff you describe…layered in judgement…so annoying. It’s like in junior high when you need to have all these comebacks for things people say.

        The “you did this to yourself” stuff is just beyond. BEYOND! I remember someone close to me made a snide comment – almost by accident – about a couple things I had to do just to survive on a daily basis. It did bother me a lot. But, it really wound up being a commentary on this person – and their lack of sensitivity.

        Reply

        • I now believe if I can’t laugh I’m doing it wrong.

          And yes, people so often do what they do because they are who they are.

          I can’t wait until I can come to the DMV so we can have a visit.

Leave a comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.