Chapter 45: Now What?

“I don't expect to live forever, but I do intend to hang on as long as possible.”
Isaac Asimov

Did I dream my last CT scan results?

It’s been two weeks now since my last CT scan and its accompanying and absolutely astonishing news that my meddlesome metastasis have significantly shrunk on my current chemotherapy course. I still have to keep convincing myself that the scan was real and not just a pleasant morphine induced fantasy as I dozed on the Chesterfield listening to my Cure albums. Furthermore, did the CT image really show such a dramatic and significant shrinkage compared with my previous scan or have I just misremembered or exaggerated the results in the retelling? I should have taken a photograph on my iPhone of Dr. Wheater’s screen so I could go back and double check, but I’m pretty sure I’m not misremembering, exaggerating or fantasising. I’m pretty sure that after two and a half years of wearying treatment and forty-five chapters of incessant bellyaching, I’ve actually had some really good news for once. It’s not that I’m not totally delighted with this good news, it’s just that I’m not really used to such good news and haven’t quite got the hang of dealing with it just yet.

As I have plodded along on my “cancer journey” (terrible phrase, I know), I have encountered many forks and intersections in the path ahead. Through no choice of my own, my cancer has developed a rather trying tendency to force me down the less ideal pathway on each occasion. If there are two possible outcomes, up until now its always proved prudent to be prepared for the worst option.

When I was first admitted into hospital after pissing blood, it could have just been a kidney stone or it could have been cancer – it was cancer.

The primary tumour could have been restricted to just my kidney or it could have spread to other organs – it had spread.

After my radical nephrectomy when they ran a biopsy on my extracted kidney they could have discovered that the tumour was benign or malignant – it was malignant.

Following the operation, I could have fully recovered or the cancer could have returned – it returned.

When I started my first line chemotherapy treatment I could have had a number of possible side effects or no side effects – I had just about every side effect possible.

When I took a planned treatment break from the chemotherapy with a view to extend its period of efficacy I could have remained stable for a while or the cancer could have started growing back again – it grew back again immediately.

When my lungs filled with fluid and had to be drained they could have stabilised or refilled with fluid – they refilled with fluid and required another 3 drains and a pleurodesis operation.

When the first line chemotherapy eventually failed and I moved on to a second line immunotherapy treatment the immunotherapy could have successfully boosted my immune system and attacked the cancer or it could have failed to work at all – it failed to work at all.

I list these less than optimum outcomes not to elicit your sympathy or for the simple joy of the popular British pastime of grumbling (although I confess to relishing both somewhat), I list them to illustrate why I have subconsciously developed a strategy of preparing myself for the shittiest possible of shit outcomes. When getting the positive results of how effective my third line chemotherapy treatment was actually being I therefore found myself in the quite unfamiliar territory of having to deal with good news. Having lived with this good news for a few weeks now I rather think that I could get somewhat used to coping with news of this type and would be quite happy to try and deal with some more of it next time around too.

I am very conscious of not being too unrealistic about what to expect next though, but I am allowing myself a good slice or pragmatic optimism nonetheless. So what can I realistically expect next?

It is obviously not possible for my doctors to definitively state exactly what will happen next. I have however discussed likely scenarios with my doctors and although nothing is certain and no commitments can or have been made, I have regardless surmised that the current most likely scenario is that cabozantinib will continue to work for another six to eighteen months or so before the cancer will eventually outwit it and start to grow back again. Based on past experience, when it does eventually start to grow back it is likely to be pretty aggressive and my health could deteriorate quite quickly again - as it did last summer. Perhaps the best analogy is therefore that my recent good CT scan results means that I have effectively kicked the can further down the road. I know that particular analogy has negative connotations associated with it, but I don’t see it like that. We are all mortal beings so ultimately all that any successful medical intervention can ever really do is just kick the can further down the road and delay the inevitable. Its simply just a matter of how far you can kick the can and whether or not it comes to rest in place where it is capable of being kicked again. So I may well have just kicked the can further down the road, but I kicked the bloody thing a damn sight further down the road than I expected, and there’s every chance I can hoof the bloody thing again when I catch it up.

There are also less likely, but more extreme, scenarios that are not beyond the realms of fantasy. On the negative side, the cabozantinib could fail much sooner, but based on how I’m currently feeling I don’t think that’s especially likely at the moment. There’s also the unlikely, but not impossible, scenario that the cabozantinib continues to work to such an extent that it actually eradicates all of the tumours completely. If such a scenario came to pass I’d have to start thinking about all sorts of things like returning to work and making longer term plans again rather than simply living from day to day. I’m trying not to be seduced by this scenario at the moment as its still unlikely, but I can’t help myself just pondering, what if.

What if?






6 comments:

  1. This chapter took my breath at points. I can relate to how it comes to make more sense to expect the negative -- not out of pessimism, but out of experience and realism. I'm truly excited and happy for you, Crispian.

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  2. gosh I hope it works Crispian. I only came to know of you by accident through a Google search for the history of science and I came across your funny periodic table of elements … I take issue with a few of your listings for quacks but whatever … I hope it works Crispian, I really, really do. So that you can live to roll your grandkids around in that wheel barrow and so that I can maybe ask you to explain what your issue is with acupuncture!

    Wishing you the best of outcomes.
    /Karina

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  3. I keep checking in to see how you are. It's actually great that there are no updates - I take that to mean that everything is going well.

    Cheers, Neil

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  4. No news is good news, yes? I miss all your news, though! :)

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  5. Someone else very much hoping that no news is good news, and that you're enjoying life!

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    1. Thanks. No news is relativley good news as my latest CT scan showed that the chemo is still holding the cancer at bay. Although I have not posted for a while, I have been writing a lot. Watch this space.

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