When I first found out that my cancer was back, I was adamant that I’d blog the journey again, and to start with, I did. But as the journey got harder, my physical, emotional and mental strength changed, and I’ve found it much harder to understand things, articulate how I feel, and share what I’m going through. But at times, it’s also felt impossible to physically do it, even when I wanted to.
Eight weeks ago, I thought surgery would be like it was when I had the lump removed from my breast – just with a higher risk of brain damage. Pretty blasé, with hindsight, as I didn’t really appreciate how different the recovery process would be, physically or emotionally.
To a geek like me, how the brain repairs itself is now totally mind-blowing! Pun entirely intended, obviously 😉 Basically, my brain is trying to rewire, remind and retrain itself to do various things which, previously, I did without thinking. And not just physical things like walking, or wiggling my fingers, holding cutlery, picking up a cup or having the stability to put it down again. It’s learning to manage multiple sensory inputs (what I see, hear, smell, touch and taste) simultaneously. It’s having to consciously process each one, decide what to do with it, then connect the dots and make it happen. Most adults do this automatically, but each one takes energy for me right now, so I have to filter some things out, to allow me to do the others. For example; I can now have music or the tv on while I make my dinner – sounds easy right? But a couple of weeks ago, that would’ve felt like sensory overload – I’d have got a headache and needed to completely switch off and recharge for 30 minutes, before having the energy to do something else.
There’s also the slight snag that, every time I felt ready to share something, it changed. Or some days I’ve felt super positive and like me again, then five minutes later I’ve been running for the cave, or not had the detail to share, or the confidence in my creativity, or ability to write. Or just fear of writing utter crap…
Well. Over the past week, some of that has changed and I finally feel like I’m turning a corner, which feels amazing 🙂 There’s still a gremlin in the cave (see 28. Dexamethasone – and the devil inside) that says: you know it’s going to change again as soon as you publish this, right? But if I’m true to myself, that person I don’t feel like I’ve been or seen for a while, then I’m gonna to stop worrying about that and just go for it.
So, taking inspiration from Lewis winning his fifth World title last night in Mexico, here goes… just give me half an hour to recharge first… 😉
Take that, Dastardly – you’re outta here!
Quick recap; the first priority was to tackle Dastardly, the first of my two lesions; the one in my brain which was growing aggressively and paralysing the left side of my body. The treatment for this was Neuro surgery, followed by targeted high-dose Neuro radiation.
So on Tuesday, I had my review with my Neuro Radiologist, Dr Bartels, and he was happy with the results of the radiation. They’ll never 100% say it’s gone; but based on the last MRI, he’s confident that the cells he sees are just residue of the treatment – a bit like dried blood around an old wound. So he signed me off, saying: let’s catch-up in three months’ time. GET IN!
And today, I had a similar review with my Neuro Surgeon, Dr Noske (the guy who actually performed the surgery in my brain), and his parting words were: no offence, but I hope I never see you again. GET IN AGAIN!
Despite his closing comment, this was actually quite a fun conversation, which went something like this…
- Dr Norske – reads out loud as he types his notes…
- Rebecca – starts to giggle…
- Dr Norske – Stop laughing at my typing!
- Rebecca – I’m not; I just love that you’re even articulating the grammar, like ‘Rebecca says, comma,’ I do that and thought it was just me being weird, but you do it and you’re a Neurosurgeon, so I don’t feel so stupid now!
- Dr Norske – It also lets patients know what I’m recording.
- Rebecca – But I don’t speak Dutch, so you could be writing anything!
- Dr Norske – Well you’re stuffed for starters then, aren’t you?!
- Rebecca – laughs out loud, loudly, for first time in ages!
Fun aside; basically this means that, as far as the medics are concerned, the first lesion is dealt with – WOO HOO!
Look out Mutley – we’re coming to get ya!
Last week I also had another CT scan. Now I’ve had a few of these over the past couple of years, so I’m a bit of a pro, to be fair. But the last time I had one at the OLVG it turned into a rather traumatic incident involving a lung collapse, surgical drain and excruciating pain (see 8. The CT scan – that just kept on giving). This time, all was fine; in fact better that fine – the scan showed no new lesions anywhere else, meaning we’re now just dealing with Mutley, the lesion in my lung.
The treatment for this will probably be the same as for my brain – surgery followed by radiation. But to ensure there’s no stray cells elsewhere (too small to show on a scan) and to try and shrink Mutley (so there’s less of him to remove / zap), chemo will come next.
Making the best of the nasty bit
Ahhh those regular trips to ward B6; where they lay lovely warm green pouches on your arm, just minutes before jabbing a nasty canula into your vein, and pumping you full of poisonous drugs that‘ll basically kill anything in your body which even thinks about multiplying…
Or how I prefer to do it – keeping the clog-wearing nurses guessing which sneakers I’ll be wearing this week; seeing if I can colour-coordinate said sneakers with my nail polish; taking in treats for (read as: taking full advantage of the cakes brought in by) other patients; and generally trying to make the best out of what could be considered one of the nastiest things people have to do in life!
But you know what? Despite being so much weaker than I was last time I did this, I’m still up for the fight. It’s likely to knock the stuffing out of me this time round, as I’m not physically fit, I’m emotionally exhausted, it’s a different drug combination, and I’m not as mobile as I was before. But I’d still rather it was me than someone else.
Depending what stats you believe, it’s likely now that one in three or even two of us will get cancer. I wouldn’t wish this on anyone else, so I refuse to say why me. Of course I wish it wasn’t me, but I can’t change it, so I’m just going to respond in the best way I know how – fight back, believe we can win, and when we hit the finish line, grab life by the balls again and live it to the absolute fullest. I did that two years ago and have had an epic two years since. So if chemo gives me another two, ten, or twenty more years like that, I’ll still be getting more out of life than some people who never get touched by cancer.
So I start chemo this Wednesday, October 31st – exactly two years to the day since I started chemo for the first time – how ironic! Nurse Kari arrives tomorrow to kick-off the support crew, so expect a few crazy photos on Insta…
I’ll lose my hair again (probably in about a fortnight) but I plan to take control of this like I did before, and go for the big shave before it drops out (fun and photos to follow on that, as the brain surgery scar will suddenly be on full view!) And because my face and body are still super swollen from the steroids, the luck of having a head shape which actually suited baldness is out the window for a while yet (so we may see a bit more wig action this time around!)
And the return of the spreadsheet!
The chemo plan is pretty intense so yes, of course I have a spreadsheet! It’s taken a while to build – brain overload and a maverick left hand trying to type are minor challenges, to say the least! But I won’t bore you with that now… inserts sinister laugh, in knowledge that such detail is likely to follow in future blog post …I’ll just give you a sneak preview 😉