Saturday, 5 December 2015

Radiotherapy: The End. (30/30)

I have no idea why it's taken me so long to write another Brain Update.
Usually any time something new in the brain department happens, I'm straight onto my beloved laptop and puking words all over Blogger – with the occasional overspill into Twitter. No, this time I've been completely void of word vomit. I think that's because I'm exhausted –  

                  ...physically... 
                                                         mentally...
                                                                            ...emotionally.

In my last week of radiotherapy, when I was (finally) losing hair and (at long last) sleeping that little bit heavier, I found my mood was low. That's how I put it when I plucked up the courage to tell the radiographers; 'My moods are a bit low these days...is that normal?'

The influx of enthusiastic yes's and then baffling scientific explanations from every medical professional in the room was so unexpected and such a relief. Apparently as those evil cells occupying my brain are bombarded with radiation, naturally the healthier cells around them, the good guys, get a good walloping too. 

So the result is a generally knackered-out noggin and some very upset characters up there...I obviously imagine Sadness has been given free reign for the time being as Joy has been stretched and smacked beyond belief, Disgust is on holiday as she's still too traumatised from seeing the state of me after the first operation back in June 2014, Fear is simply non-existent now after too many bouts of bad news and my resulting immunity to all things scary. Oh, Anger is also co-piloting with Sadness from time to time; he is still fuming after that hideous thing that looms right outside the window at HQ decided to regrow early this year...

(The moment these guys saw the tumour...)

So yes, I've been sad. I've had The Sads. That's nothing new really, as I've had my fair share of them over the past two years. I was getting them for the months before I got my diagnosis, and had no idea why. I assumed it was uni work stressing me out; house mates being petty, making me miserable; sort-of exes playing games 24/7; the usual things. Those things probably didn't help...but ultimately it was my brain yelling at me because something was wrong with it – it was tired of fighting against itself.
I had them after my first op, when everything had settled down and I was attempting to return to normality. Just as they were subsiding after several months thanks to my friends and family, finally seeing a counsellor, and really taking on whisky as a proper medicine as well as a recreational habit – they returned in full force the second my support nurse said 'so, we'll be seeing you again soon then it seems...'
The Sads have come and gone quite a lot. They've been the one consistent side effect, and the most hideous one too. I've had immense nausea that required three types of drug and a patch to combat, intense overwhelming headaches that called for all manner of painkillers to calm, the tiniest hint of a seizure, Cerebral Spinal Fluid leakages leading to accumulation between bone and skin, monstrous black eyes and steroid-induced face swelling but no, The Sads have been the worst thing to happen to me as a result of my medical journey over the past eighteen-plus months. You could call it depression. I personally think it's beyond labels. All that needs to be said is that it's been huge, and definitely become as much a part of me as the tumour.

This is why I get so shocked when people commend me on my bravery, and my 'positivity'. I can't help but think 'Me? Positive?! Shit mate, no!' I adopt the positive attitude, sure, that's how you get through things! You fix the smile and grit your teeth beneath it. I personally repeat to myself in my head my funny little mantra that it's me it's me it's okay as long as it's me and that actually does a world of good – I say 'a world of good' as if we live in a world that does so much good that a whole world of it is enormous enough to qualify as a top level of awesomeness in official measurements, no that's definitely not the case right now...so I'll say 'several thousand worlds of good'. That almost works.
Here we go, now we're finally getting some word vomit...

Going back a few weeks, to when the specialists and radiographers and registrars and oncologists and nurses and everyone else on the planet was asking how I was feeling and then promptly upon hearing my usual cheery response of 'Really good, thank you!' letting me know that it wouldn't last; that soon I'd be losing hair, vomming everywhere, feeling as tired as humanly possible and not in a happy nap kind of way...the morning we discovered that I had a bald patch forming beneath my floppy top layer of hair, just behind my left ear where the radiation was entering me (ooh err), was actually a momentous delightful occasion. Because then I could go into the radio room and announce that finally something had happened, I actually had a side effect, yay me! I could tell friends at home who were asking how I was and just as shocked when they heard how well I was doing and feeling – almost as shocked as the medical professionals. What a relief.

Moving not-so-swiftly on...I said goodbye to my radiographers, and that was surprisingly upsetting. I'd really enjoyed their company for the weeks leading up to that day. It may have taken them all of five minutes to get me in the room, ask me my questions, clip me in and fire up the machine; I may have just been 'a nice clean arc' (I will forever hang on to those words, to the fact that I was an easy patient at least in that sense), but damn it I really enjoyed those five minutes sometimes.
Of course I gave them a card. A cutesy Thank You card with all their names scribbled in. Little sis baked some macarons to go with it, and I gave it to them the day before my last session. Then on my last day several of them stopped on their way out to lunch and said thank you, remarked on how magical the macarons were. Then when I was un-clipped from the table and my mask was lifted off for the last time – then bagged up so I could take it home, like a trophy! – all the ladies were saying happily 'that's it!' and 'there should really be a fanfare or something...' A couple of them hugged me goodbye, and they all urged me to visit next time I had a check-up. I assured them I would – and I will! I have no idea how to go about 'visiting' radiographers on the radiotherapy ward, given that they're constantly in and out of their computer space or the radio rooms calling in patients and doing all things awesome...but I'll try my best! And of course I'll bring some baked goods every time.

I'll miss the funny characters at that hospital, too. The classic lit reader fellow behind the desk in the radio ward; that radiotherapist aide with the rich 'n' luscious bob; the registrar whose name forever escapes me but who exudes happy energy; my adorable oncologist who always seemed baffled and amused by my positive attitude; my favourite nurse who would take my height, weight and blood pressure each week and update me on her cats and her mad biker husband; the neuro-specialist nurse who would demand hugs and felt like an old pal...I wish I could have got them all presents and cards when I left.

I'll also miss the nurse who was kind enough to give us keys to a hospital-managed flat located just a five-minute walk from the hospital for myself and mum to stay in as much as we wished for the entirety of my treatment – I swear she was a supernatural being, because whenever we needed to talk with her we'd walk onto her ward in the children's centre, say her name and ZING! she'd appear. Mum thought we had special summoning powers. I think she had eyes and ears everywhere.
That flat was a miracle. It sat in the cute mini-town of Belmont next door to a florist and within skipping distance of two Asian dining places, an off-license, a pharmacy, a teeny one-track train station and a (crappy chain) pub. The walk from there to the hospital at 11:30am every day was a breeze. I also couldn't help but think it would be a perfect first home for most graduates.
That flat is owned by The Rhys Daniels Trust; a charity formed twenty years ago by an unfortunate family who lost both their children to disease and so want to help other families with young'uns undergoing treatment for their nasty illnesses. One of their tag lines is 'Providing a home from home for families who need it most'. That's exactly what they did for us, and my whole family is so grateful for that.
We did our best to make the place a little more cosy – it was already gorgeous, but replacing a few bulbs, buying the odd plant from the florist and mum stitching up a curtain to put over the front door made it extra lovely. We also left behind a few of our old knick knacks as little donations.

Our local Caffe Nero must have made a fortune from us – even with my staff discount! The team there are more people I'll miss, more gorgeous individuals I'd happily have written a card for and given gifts to. I filled out a mynerovisit review for them, leaving my name and telling them to visit my Nero whenever they want to of course – I feel that was appropriate.

I feel that this whole experience has been yet another mad phase of my life-changing brain extravaganza. Also, despite my bad luck and tendency to fall into disasters every which way I turn, I have not had any extra treatments tacked on after this has all ended...I was expecting to be told that I need some other operation or another few preventative potions at least before my radio ended, but nope. Even more shocking, my radiotherapy went off without a hitch. Aside from the side effects, I've had no unpleasantness or unexpected derailing. I sailed through it, just as my neurosurgeon said I would. There's a first time for everything!
Yes, I am still focusing on the positives. And the most positive thing of all is...
Next year is my year off.
I've decided. I mean yes, I will be going back to work in January (so this month and the run up to Christmas is like a pre-year off time-off period, shh!) and I will start part time but work my way up to full time again hopefully, so it's not a year off in that sense – it's a year off from this brain business.
In 2016, I refuse to undergo any ops, therapies (specifically the ones prefixed with radio or chemo) and I will only enter a hospital for the occasional check up and MRI scan...and maybe consultation with my surgeon...that is it, though! I want to take a break now. I know I've been luckier than most for so many reasons, reasons that I am reminded of constantly and can make me feel so immensely guilty – I am young, my tumour is low grade (but misbehaves like a spoiled petulant tanrum-throwing teenager), I had treatments at the best hospitals known to man* (*not definite, but due to reviews from past patients and the general feel of the places, yeah)...but enough is enough.
I will still be taking care of myself of course. Still keeping up with all my friends in similar situations, still following the amazing Brain Tumour Charity support group on Facey B but maybe not posting in there as much, still updating people whenever they ask me 'what's the latest?' Just not letting my blundering brain get the better of me again any time soon.

They won't know if my radiotherapy has worked for at least a year – and even then, I will still have to be monitored for maybe a decade. So what's the point in worrying for that first year? Exactly, NONE. Instead I will relax, make coffee for the general public, hang out with friends, adventure here and there, and write write write. 
So, here's to 2016. The year of brainlessness. 


Previous brain updates can be found here here right here!
Radiotherapy posts...

  1. The Latest Hit. 
  2. Upcoming Radiotherapy & Little Princesses.
  3. Radio: The First Few Days (4/30) 
  4. Radio: Still Okay (8/30) 
Also my epic fundraising adventure for The Little Princess Trust can be found here: https://www.justgiving.com/Grace-Latter/ 
(I've raised over £1,800 so far and the dream is to make it to £2,000 in the next couple of weeks so I can finally send it off and give the charity the best Christmas present ever!

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