58. Looking back and looking forward

I’ve spent much of this week reflecting, and given how far I’ve come, you’d think I’d be happy, right? But it’s actually made me feel a little deflated. So I’m wondering, why?

On Monday evening (26th). I sat on my balcony contemplating; the same time last year was my last night at home before I’d go in for brain surgery. At that time, I faced a number of possible scenarios. Worst case, I’d not wake up from surgery (a risk with any operation, but even moreso with neurosurgery). If I did wake up, I could be paralysed, or have limited use of my motor (movement) or neuro (brain) functions, depending on how close the surgeons felt able to safely go in removing the lesion in my brain. A more positive outcome was that they’d be able to remove the lesion, but the paralysis down my left side would be irrepairable. Best case was that they’d get the lesion out and I’d recover the use of my left side.

On Tuesday (27th) it was a year since I had the drain inserted into my left lung. This was to help stabilise my breathing on the ventilator during surgery. They didn’t tell me in advance, but it hurt. A lot. And subsequently caused me the most uncomfortable, painful, sleepless and shameful night of my life. (No cheek from you lot, thank you! Shameful nights may have been aplenty in my younger days, but this was another level, see 20b. The Reality: post-opfor gory details!)

And yesterday (28th) was my first anniversary of having brain surgery (again, for those who like this stuff, see 19. The one for the geeks (look away now if you’re squeamish)).

Over the days before, during and after surgery, things on my mind centred around the possible outcomes above – the kind of stuff you only think about in hypothesis… “what would you do if you only had one day to live?” but the reality of all this is nothing like the hypothesis. The thing which still haunts me about this time was having to write a will (a note on an iPhone, no grand scriptures or formalities), ask anyone with a printer to print it out onto whatever they could find (again, no 300gsm champagne-coloured or watermarked paper) and ask complete strangers in white coats to witness and countersign it (nope, no red wax seal or ribbons involved). It felt so insignificant, so rushed, yet so important. And that kind of summed up the whole week.

At the time, my focus was on survival. Yet, as someone who lives by the mantra of ‘focus on what you can influence’, I found myself with little I could influence – I was in the hands of (albeit very capable) experts, in whom I simply had to trust, literally with my life.

So looking back now, it’s hard to believe I am where I am. The thought of being alive a year later, still living in Amsterdam, having full independence, being back in the gym twice a week, traveling all over the world, watching F1 in random countries, and being signed off by the company doctor to be able to start working again… if you’d offered me any of that this time last year, I’d have bitten your hand off!

So why am I not on cloud nine?

In my usual fashion, I try not to dwell on negative stuff. Instead, I look for a way forward – why is it happening, what does ‘better’ look like, how do I get there, and what do I need to do to make it happen. So here’s my conclusion…

My future is uncertain – but show me someone who knows their future?

Having not updated the blog in a while, there may be a bit of catching up on this one – sorry! When I was first re-diagnosed the plan was to kill my cancer; find it, get rid of it, and stop it coming back. To me, this seemed normal, as it’s the same approach as we took the first time round. But after my scan in April, we realised that this targeted approach was no longer realistic, because whilst we’d got it out of my breast and brain, it was still in my lungs and vertebrae. Simply targeting every lesion when it appeared, would be like trying to kill an army with a single sniper. The clinical trial could’ve been an option (as it reprograms the overall immune system), but my kind of cancer wasn’t the kind which immunotherapy is currently being tested on. So until a new trial (which is suitable for my kind of cancer) becomes available, we need to manage it and keep it under control. So I’m now taking new medication to do just that. One tablet is a hormone inhibitor, which stops my body ‘feeding’ the tumour cells with the estrogen it likes. The other is a drug which slows the rate at which cancer cells divide and multiply (hopefully slowing the rate at which my tumours are growing). For the first few weeks, I have fortnightly blood tests, to monitor how my body responds to the new meds and adjust the dose to the right level. And after three months, we’ll do another scan to see if it’s working.  One tablet I take daily, the other I take for 21 days, then have seven days off. So it’s a bit like taking the contraceptive pill! And as there are few side effects, I can get back to leading a normal life.

Don’t write me off because I have cancer – there’s much more to me than that!

Given how we’re now managing my condition, the doctors describe it as managing a chronic illness. A bit like having epilepsy or diabetes, I simply take tablets every day and monitor how I’m doing. Unless something new pops up (which could happen to anybody), I can lead a normal life. I’m cool with this; as I’ve shown over the past few months, I’m still an optimist, I still believe there’s more I can do, I still have more energy than most, and when I get behind something, I go for it, full on. But I’m also human, and having been through all this twice now, I’d be lying if I said my confidence hadn’t taken a knock. I worry that people will make decisions about me, based on my having cancer. I assume people won’t want to get involved because I may not be here next year. But I guess I’m as guilty of this as anyone else, because the thoughts have obviously crossed my mind too. But that’s only because I’ve had to think about them – most people never have to. We all make decisions about people… “I bet she’s feisty, she’s a redhead…”, “he’ll be tall because he’s Dutch…” or “they’ll never get a job, they skipped school…” But these are assumptions based on either stereotypes, statistics or lack of information / understanding. I’ve haven’t changed because I have cancer – I’m still me! I still look like me, think like me, behave like me and if I can’t do something, I’ll say so – just as I did before. I need to remember this, as much as everybody else.

Back on track

The concerns above contributed to why I’ve not updated the blog for a while. But now I feel clear on what I can do to influence them, I feel more focused on the future and ready to get my life back on track 🙂

Look out world, this feisty redhead is back!


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