61. The Untold

In the past few months, the blog’s been pretty quiet. As a Comms pro, there’s always a spin you can put on things to pitch them how you want, and it’d be easy for me to do that here. But the simple truth is that heaps has been going on in the background, and I’ve felt unable, unprepared, or unsure of how to write about it. So instead, I’ve kept the book closed – painfully aware that people could be drawing their own conclusions on what that means, and frustrated at being unable to address that. But it’s been the right thing to do.

Right, now that’s out of the way, time to bring you guys up to speed a bit on what’s been going on over the past few months.

A brief encounter with Dastardly Junior

So last year, we discovered that Dastardly had left a puppy behind in my brain. The little blighter had escaped from his kennel and hidden in the front garden. Luckily, he was doing no harm, just lying there, blissfully unaware that we’d clocked him. So while he snoozed like a lazy lesion, we reloaded the guns and prepared to fire.

So I was back at to the VU for more MRI scans, another radiation mask, another big hit of radiation and, within a week of spotting him, ‘Junior’ was gone.

So the MRI I had a couple of weeks ago – the results of which I received (quite fittingly) on World Cancer Day – came back clear. Dastardly and Junior were both gone. To use the clinical terminology; the scan showed “no evidence of (the Dastardlys), no reoccurrence of (the Dastardlys), and no new (Dastardly) lesions in my brain”.

AN: as I learnt from a new follower on Instagram… (and for those who think I’m inspirational, you should follow @thecancercomedy for highly entertaining, satirical humour, quintessentially Australian upbeat outlook, and a generally awesome read) …apparently, Oncologists are now reluctant to refer to people as being ‘in remission’, instead they prefer to say ‘NED’ or ‘no evidence detected’.

So whilst the MRI only cleared my brain (‘only my brain’ lol), having a NED status is HUGE. And this felt even more significant because it means we didn’t just defeat the original Dastardly lesion, but the Junior spin-off which hung around for a second attempt got smacked right out of the park before it could even bark.

AN: the downside to this is that I now have a delightful bald patch on my head where they radiated again, which explains why my crazy hair is now even more crazy than ever! But the upside is that it’s merely decoration; a topic of conversation, a story to tell, and a challenge my stylist is already having fun with!

Away with the fairies on morphine

So while we were discussing what to do about Junior, I had back ache. OK everyone gets back ache, right? But when you’re living with cancer (yep, I’m kinda used to saying that now), any ache or pain instills a sense of uncertainty, doubt, even fear, and you find yourself asking that awful question: “is this a thing?” You feel pathetic, like a hypochondriac, always wondering if there’s something wrong with you?! But this question caused me all kinds of upsets last year, when I knew Dastardly was doing the rounds upstairs. And whilst I’m less paranoid these days, it never really leaves your mind… that’s what living with cancer is like.

But when the back ache started to stop me sleeping, I finally gave in and took paracetamol (yes, I know, I’ve gone Dutch and reverted to paracetamol as the cure for practically everything). Unfortunately, that didn’t really help, so I mentioned it to my Oncologist. Knowing there’d been early signs of cancer in my bones, he looked again at my last CT scan and suggested the radiologist had a look…

In the meantime, to help me get some sleep, he brought out the big guns… morphine. “Start off with one tablet a day and see how you go” he told me, “you can go up to six if it gets really bad.” As someone who only takes paracetamol when it gets really bad, I scuttled off looking like the shocked emoji 😳 with what felt like a prescription for nuclear torpedos in my bag, and waited at least two days before I dared to go to the pharmacy.

I hate morphine. Aside from the fact that it doesn’t agree with alcohol (there goes the occasional gin & tonic), my previous experience of it in hospital sent me away with the fairies. So ‘reluctant’ came nowhere close to how I felt about these little pills… they’re opioids, which I think of as highly addictive and scary as hell, so like sleeping tablets, I’m kinda scared of taking them.

Anyway, the Radiologist confirmed that the pain in my back was in the same spot as the dodgy looking dense spot on my CT scan. My first thought – fuck, now I have it in my back… my spine… paralysis…? But as soon as she saw these thoughts on my face, my new friendly Radiologist (whose name I lost in a haze of morphine, but who I remember as being super upbeat and likeable) came back with “but it’s very accessible, so we should be able to radiate.” Slowly coming round from OMG to OK, my response was “so no mask, right?” “Nope she confirmed “and no side effects either – it can hurt a bit more for a day or two afterwards, but if it works, the pain will then gradually disappear. And if it doesn’t, we can do it again.” I just heard ‘no side effects… pain will disappear… we can do it again if necessary…’ so no further persuasion was needed.  Right, let’s zap this little f***er I replied, “before I can give it a name!

One week later, I had radiation on my spine. Three days later, the pain disappeared. Within a week I was back in the gym and two weeks later I nailed a 6k run at PB pace. I didn’t need time off work for any of it and felt I was winning at living!

Welcome to 2020

With a second brain tumour smashed out of the park, and a 2nd thorax lesion zapped to hell, my Oncologist prepared me a letter to explain to the Australian authorities why I was entering the country for Christmas and New Year with some pretty crazy drugs in my bag! In summary, it read something like this… “Rebecca has been through hell, but right now she feels remarkably well. She’s coming to you for Christmas – any problems give us a shout.” Yeah, I was pretty proud of that!

After an awesome trip to Perth and Sydney, I got back to Amsterdam in January with the usual jetlag, so decided the gym was a good idea – after all, I had a 10k in London within a month and needed to get my 6k up to 10k. Sadly, my enthusiasm and tendency to push myself, meant I asked more of my body that it was ready for.

My first ever running injury

Now I get it. When athletes say that picking up an injury his heartbreaking, it really is. And for the rest of January, this caused me huge physical and emotional pain. I was having physio on my right hip twice a week with extra sessions in the evenings, and every time I thought it was getting better, I’d try running on the treadmill – it would feel fine and my confidence would come back, but the following day the pain would return. The experts are so right when they say you shouldn’t rush injury recovery, but as the London 10k got closer and closer, the more determined I was to do it. I’d signed up for it a year before, when I’d only just learnt to walk again. I’d got up to 6k at a pace which was faster than I’d run even before I was sick, then just weeks before the run, I felt knocked back by something I just couldn’t fix, however hard I tried.

The heartache of not being able to run the race (not because I had cancer, but because I’d got a running injury, for the first time in my life) had me in tears, many times. I’d raised £4k for Cancer Research UK, brought together a team of run buddies from all over the UK and NL, with the latter raising a further €3k for the Dutch Cancer Society. And I’d been the case study for the event organizers, with my story featuring on their website, on their mailings and their social media channels. I didn’t want to let them down and felt a fraud for taking the sponsorship money if I didn’t at least try to complete the event. So I flew to London to give it my best shot – expecting to run the first few steps, maybe even a few hundred metres, but more likely to walk the rest. But by that point, it didn’t matter how I did it; I’d get over the line even if everyone else had finished, I was on my knees, or being carried home.

In the end, storm Ciara caused the event to be cancelled, so I was relieved of duty. Disappointed? Yes, as psychologically I’d got through the emotional pressure I put on myself about being a fraud or letting people down. Instead I’d taken mental strength from what we’d already achieved, in brining together a group of awesome people, raising a heap of money for Cancer Research, and enabling a few people who aren’t runners to get themselves fit enough to give it a good shot.

The latest

As it happens, it’s probably a good thing I didn’t do the 10k, because the following week we found cancerous activity in my right hip. How big this is, we don’t yet know. And right now, it’s not causing me too much pain. In my heart, I still believe the initial injury was a sports injury. But the long-term outlook for the old hip isn’t great – my bones are weak from the amount of chemotherapy I’ve had in the past four years, so we know they’re prone to injury.

But while I wait for the Orthopedic team to decide how best to fix me, I’m banned from high impact activity – running is out, hockey is non-starter, and flying over car bonnets like the Dukes of Hazard is a definite no-go area. I officially have to go steady from now on. Again, this is tough – plenty more tears have flowed, as running and training have been my passion and therapy for as long as I can remember. But sport is more than just running and training – there are many other categories and much more going on in the background that still let you be part of the action. In the meantime, I’m still me, crazy, alive and kicking (with care, of course) and there’s plenty more I still want to do – I can still work, travel, cycle and maybe I’ll take up swimming…?

This is life, and I’m living it

This all sounds like a pretty challenging time, right? But as I see it, it’s just life. Most people face challenges like this at some point in their lives – maybe from a different disease, ailment, limb, or passion they have to give up. My Nanny played hockey when she was younger and I always loved telling her about my on- (and off-) pitch antics 😉 But I never appreciated how it must have felt for her, listening to me going on about something she couldn’t do any more. But she grew old with such self esteem and respect, she recognised and accepted (perhaps with tears behind the scenes) that, at some point, she had to change the way she did things or stop doing things she loved. Whether it was hockey, peeling the veg in the garden, getting down on her knees to weed the flower beds, or making the beds. As our bodies get older, we change the way we live our lives, and that’s normal.

So I believe I’m no different to anyone else – what I do and the way I do things will change, as it does for everyone – for me it’s just happening a bit quicker than most. But hey, since when was I ever patient or content with going slowly?!

#BoxyOut

3 thoughts on “61. The Untold

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  1. Reading up on your life is always a good thing! Storms come all the time and we get through them, just as you’ll get through this ‘storm’ blowing about in your hip. We are all living with something…family, friends, parents…we live it minute by minute, breath by breath. I was supposed to be in AU in early December…but a storm or two came our way. So trip post-phoned (at least it will be their winter when I’m there (this girl is a cold weather one), now I’m looking at the bright side (and building a huge list of books & Netflix) for the 18 hour leg and looking forward to the Aunties & Cousins, and cool beaches (and wine and food)! Thanks for the update and good on ya’ for the update.
    Best! Robyne

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