Sunday, April 21, 2013

Round and round again.

It's nearly time to go and see the brain doctors and find out what my scan said. I've reverted to type over the last few weeks and internalised the anguish I'm feeling and refused to think (let alone talk) about it. But I've finally noticed that that's what I've been doing, tried to work out why, and here I am writing about it in order to make the uneasy feeling go away.

I've spent some time today thinking about what questions I should ask. Which inevitably led to the same old cyclical arguments pinging round my head. It turns out that I've been quite successful in my plan to "not worry (think) about it until the next scan", so much so that my thinking hasn't progressed at all since I last thought about it. Which would make sense, seeing as I haven't thought about it.

Anyway. The same dilemma. This is how it goes:
  1. First, I think, it would be useful to know some idea of precedent. In cases similar to mine (in terms of age, grade and location of tumour, pregnant...), what would they expect to happen? What is the likelihood of the tumour growing back? And where - in the same place? And when of course. And if it did, would it be likely to have gone up a grade? Or two?

  2. Then, I think, would it really change anything to know how likely all this would be? It doesn't actually tell me anything concrete. Which of course nobody can do. Thinking through the options - if they say it's 98% likely to come back, then how would that impact on the way I live my life? Well, I think I would ignore the whole thing between scans and deal with it when faced with the results. Much as now.

    And if they say it's only 2% likely to happen, then I'm still going to wonder... And when scan time comes around go through probably this exact exercise again. There isn't much difference between those two extremes, in fact, in the way I would live.

    In addition to this, I think it would be better to go through life believing it isn't going to come back and then getting an almighty shock if it does. But dealing with it at that point and moving on.

    That would be better than living life in permanent expectation of a returning tumour - in order to minimise the shock if and when it does happen - only to find that it doesn't. I'd have wasted all that time and energy preparing myself, and who knows what opportunities I'd have passed up for an expectation that never materialised.

    And it's not like I can't cope with the shock, I've already done it.

  3. The thing is, I'm used to looking at history to inform me of what to do. When I have a problem with a project at work, the first thing I look for is precedent. Has this happened before? Has anything similar happened? What was the solution, what worked or didn't work? This is all very useful information for creating a plan to move forward and resolve the problem.

    But here, there's no point having a plan as the precedent isn't actually relevant. In that it isn't directly applicable to me. It's just a possibility.

    So there isn't a plan, except to not have a plan. Unless the time comes when I need to make a plan, driven by scan results. OK, at this point, its decided. It wouldn't be useful at all to know likelihood of the tumour coming back. Job done.

  4. Except it would be interesting to know right? Maybe with some idea of what has happened before...?

  5. No, it wouldn't help. See above. End of. (Repeat).

  6. At this point I have a little break from thinking, due to fatigue / banging head against wall. Then never really get back to it. Today I managed to get a bit of clarity and take it a bit further.

  7. So I'm agreeing with myself, it wouldn't be useful to know statistics on likelihood of the tumour coming back, as only scan results can tell me what is actually happening.

    But what if the time comes when a scan does show some regrowth and I need a plan? What would the plan be? Here are some things I would like to know the answers to: how big would they let a tumour get before surgery? And would surgery be the only option?

    It's clear that surgery is my main fear right now, having to go through it all again - physically. But I'm sure in that situation it wouldn't take long for all the other fears to return.

    I think it would be useful to know now what the plan would be if that happened. And this is what I will ask about in the consultation. Also, what is the "detection plan" from now on - frequency of scans etc.

So, as things stand I have a few questions I would like to ask. All this assuming that my scan is clear of course. If it isn't then I guess I'll spring into plan mode anyway. Just have to wait and see.

I might as well get used to waiting and seeing.

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