I just want to know. I need to know.

The back story.

My usual round of checks took place on Tuesday (7 April). As usual, I turned up for the blood draw, the appointment with the Endocrinologist, Oncologist and Surgeon.  But this time, I also had to report some spinal pain.  I have pain when sitting, and especially when standing up from a sitting position.  I knew I had to report this.  I knew it could be worrying.

The bloodwork was mostly fine. Cholestorol stable, sugar still slowly rising, tumour markers stable, INR a little high. Mr W2 was concerned about the spinal pain though. He has always checked in on any bone pain as my type of cancer can metastasize to the bones. Thus he likes to keep a weather eye on bone stuff.

So, unsurprisingly, on Tuesday he referred me for a bone scan.

That is where the mind takes over and I find myself in a difficult place to navigate.  And so I resort to writing it out.  I write to “download” what is going on in my head.  Not quite to make sense of it, as that is not possible. It is what it is.  It is not about comprehending what is going on in my mind, but about trying to release it from inside my head and draw off some of the pressure. I find that it also captures those thoughts and fears when I am in that space.  Once results are in everything changes, and although I can remember what I felt, the territory has changed.  Irrespective of the results.  It is that space of the “unknown” which is the most difficult, in my view.  Not knowing is excruciating.

I only had 4 days of not knowing, but it feels like an eternity.  In the next couple of posts, I share what I wrote while in that space.  Firstly, I am sharing what I wrote on the evening of the checks, once I returned to my hotel room after seeing each of the Doctors, with a wait ahead for the bone scan, and then the results.

This, I guess, is Part One of the story.  And a spoiler alert – you already know what happens, and that there is no bad news.  But when I wrote this, I had no idea what was ahead.

Tuesday 7 April

8.15 pm

What do you call it when you are so exhausted, stressed, worried, scared that a contradictory calm descends? When you are “beyond” the familiar heightened, palpable stressedness, that peak of anxiety? When all you can feel is a sense of resignation. A space far beyond the spectrum which spans optimism and pessimism. Or hope and despair. I have no idea what it might be called. I just know that is where I am.

I just want to know.

Is this back, lower spinal pain sinister or not? Is it caused by calcium depletion? Is it connected to spinal injury from years ago?

Or is it cancer in my bones?

I just want to know.

I am beyond fear, beyond anxiety and even beyond worry.

I just want to know.

I feel fragile yet strong. Out of the eye of the public, unprotected by privacy, the tears are too near the surface. I blink them away, force my thoughts elsewhere and remove myself to space when I can release, give in to this uncertainty and simply let those tears fall. But when I am alone, unwatched, the tears retreat stubbornly, as if I must keep my composure. Until I know.

I just want to know.

And soon I will know. Only three more days or so. In some ways it stretches, impossibly ahead. Yet in other ways, it is so close I can feel no anxiety about the wait. The wait, the results. Both are bound together. Inseparable.

I just want to know.

In the past I have found myself clinging to the waiting time, knowing that it might be the last days and hours of innocence before test results change life and move me into an unwanted space. Again.

It is different this time. The agony of not knowing is more powerful than the fear of knowing “the worst”. No matter what is ahead, I am simply beyond it.

I just want to know.

I

need

to know.

Backyard butterfly

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7 thoughts on “I just want to know. I need to know.

    • Thank you so much for your comment and kind words. Yes, it was horrible and felt never-ending. But now I am on the other side of it, thank goodness! And counting my lucky stars.

      Great to connect with you – I have been checking out your blog too.
      Warm wishes
      P

  1. Pingback: Part 2 of the Long Wait | Feisty Blue Gecko - a tail of the unexpected

  2. It does feel as though we spend all our time post diagnosis wanting to know. Will we be OK or not? Will it come back? There’s no easy way to deal with not knowing except the strange clam that says ‘whatever happens next, I’ll deal with it.’ I wish we didn’t have to live like this but somehow we do. Thank you for the spoiler P, I wanted to know the pain in your back was something other than cancer and I am very relieved to hear there is no bad news. I hope that remains the case at all future checks. Sending much love xoxox

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