Advocacy Avoidance

Sitting here on a train that is somewhere between Ottawa and Toronto, quietly cursing myself for putting off this so long. After a couple trips to different eye doctors – one at a private clinic, the other within the hospital, and having been sent home both times with the sentiment, ‘we don’t see anything’ I have become a self-doubter. Also after a couple calls to the hospital about when my MRI will be, and why is it being put off till April – with one not-so-happy response, and then another with simply no response at all. . . my inhibitions kicked in, and I just plain shut up about it.

I thought it would be okay to wait till next week during my doctor visit to bring things up. I thought my eye would be okay.

Except now the left eye is blurred and shadowy and flashing. Not a good thing. I’m really such a jackass for not doing something about this earlier in the week. Somehow I figured it would be okay.

Anyhow, so here I am on the train from Toronto to Ottawa, following a week of conference and meetings and work stuff . . . and kinda falling apart emotionally. Just kinda, because I’m not breaking down. So – that’s simply ‘kinda’.

We’ll arrive in Ottawa and meet my parents at the train station. They’ll give us a ride to the emergency room. I’ll ask them to take a look of my left eye and help fix this problem, if it can still be fixed. And meanwhile my nose has been bleeding for most of the train ride – and there are freight cars ahead of us making this train delayed by an hour – therefore I won’t get to Ottawa till 9:30 pm.

Next week I’m supposed to be setting up for chemotherapy. They found a marker in the cancer that is HER2+, which is good only because there are targeted therapies for this kind of cancer. The plan is to blast away the cancer by coupling the HER2+ treatment with chemotherapy.

yay.

No, it’s actually: YAY!

But still. Chemo. Ugh. Terrible stuff.

A part of me is scared it’s too little too late. Life feels normal despite the cancer, until you can’t sleep from back pain, or until the spot in your eye starts growing rapidly, or until your nose won’t quit bleeding, or until your damn lung decides to collapse in the middle of the night. (Until you throw a hissy fit on a VIA rail train.)

I’m a jackass because I didn’t push when I knew things needed to be pushed. I just stepped back after a couple attempts and said, ‘Okay I’ll wait’ – except waiting when I know there is a problem is doing me zero favours.

Part of this whole ‘dealing with cancer’ business is being an advocate. And sometime, I guess that means not caring that you are potentially bothering others.

All my life I’ve felt I was bothering others! I’d literally not call my friends in fear that I would be taking up their time unnecessarily. So when it comes to taking up a doctor’s time with repeated requests for a speedier MRI or hospital appointment arranging . . . auuuuugggghhh.

And then there’s just plain denial. That is my responsibility, and my comfort blanket (until it’s really not so comfortable anymore). I have put off getting this eye thing checked AGAIN because it’s actually easier to do nothing. Every time I do something is takes a whopping load of effort and determination. The idea of having to repeat advocacy moments over and over and over until answers are found is just so . . .

It is just so very necessary.

I don’t like it. But it is necessary.

Anyhow, this train is late. My nose is still bleeding. My eye sight is like looking through a glass of beer. The seat is pretty cozy. And it’s quiet in the car. Out the window there is darkness, with the occasional pockets of streetlights and cities. I am okay. I’m not in pain. This will be dealt with.

I will go to the emergency room, and I will advocate for myself again.

And then, probably sometime tomorrow or Sunday, I’ll crawl into bed and turn on the Netflix, and hide from the world like I so love to do.

 

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13 thoughts on “Advocacy Avoidance

  1. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  2. Oh, dear Catherine, I am so sorry for what your are going through. But please do not beat yourself up because the root of it all is fear. And for all you have been through, you’ve the right to feel that fear, wondering if life will ever be the same, struggling with potential and scary losses, and also the deep desire to be able to have things just be “normal”. There are times in life when we are so overwhelmed with the unknowns, so many that it becomes nearly impossible and makes us want to just keep the status quo so we don’t have to face the trauma that is part and parcel of past experience. I find your self-revelations all too familiar in much of what I have been through – but I was never able to share it with the grace and candor as you have done. i am so proud of you for the courage and honesty with which you have written – and I know that legions of others such as I will recognize themselves in the same boat – and others that will take their cues from you and be more inclined to be self advocating.
    much love,
    Karen

  3. You’re still on the train as I write…. wanted to point out you are doing something. You’re on a train headed to the emergency room. That’s something…. wishing you clear sight and a non dripping nose. Wishing you more than that too but you should know that already.

  4. I wish healthcare providers would be more sensitive on how their responses can make us self-doubters, when we are the ones who best know our bodies. It could be a sign of overwork, lack of empathy, or lack of experience on their part. Thankfully your parents are there to be your advocate.

    It is good news that there is targeted therapy for your cancer. I wish for you that this therapy does put the cancer into remission.

    I’m sending positive thoughts and energy your way. My Zeus is sending you soothing purrs.

  5. I totally understand. Sometimes it is easier just to try and hopefully let things happen when they need to happen (and who wants to spend all of their time in a hospital!?).

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