42. We’d like to apologise for the previous apology

Having entitled my last post “…bring on 2019” and ending it by saying I was looking forward to “getting Boxy back in business”, I’ve clearly made a naff start by neglecting my blog ever since…

Sorry for that.

What’s perhaps worse, is that I’ve shared snippets of information on my Instagram feed and stories, without the fuller picture or context, which has led to a number of “hope you’re ok” and “just checking in” messages from people, one of which accidentally went to the wrong Rebecca in my friend’s contacts. She (the other Rebecca) was, in fact, a work colleague, big wig, Head of Legal…

whatsapp image 2019-01-18 at 22.53.37

(Luckily, no kisses, emojis or gifs were involved.)

In most cases (not the case of the other Rebecca, Head of Legal, at an extremely reputable and distinguished British brand, which I really shouldn’t name, to protect the reputation of both the brand and its Legal team), I responded briefly, apologising for not having provided an update before that point, and promising to try and update the blog that night…

(Clearly that didn’t happen.)

Some of you, I know, have seen at least two weekends since then and, as friends of mine, it’s highly likely that that will mean significant consumption of juniper- and grape-related beverages. Quite frankly, I’m surprised you’ve bothered to read this far?! But, as always, I’m very pleased you have…

AN: get on with it!

…so here it is, the first update of 2019.

Hump day – we’re half way!

On January 3rd, I kicked off the new year with a CT scan. This was always in the plan; having already had localised / targeted treatment to take out the first tumour in my brain, then started chemo to attack the second tumour in my lung (and any other nasties which my be lurking undetected), the CT scan was a half way point in chemo to see if it was working, and four days later, I’d return to OLVG to see the lovely Dr Kerver for the results.

Bring in the cavalry

Throughout my treatment, my Dutch friends have been incredibly supportive. In stereotypical Dutch fashion, they’ve been very direct and encouraged me not to be stereotypically British, but to talk to the doctors in language they’d understand…

So I’ve started Dutch lessons.

After two sessions, I can now tell the doctors my name and date of birth (essential information which I’m asked to provide before every treatment). I can also confirm my address, tell them I’m English, and that I’ve lived in Amsterdam for three years. My ability to describe my parents is an added bonus; my mother is short and my father has no hair. Impressive, but not exactly the language my Dutch friends had in mind. They meant don’t take any shit; if you don’t think they’re telling you everything, ask again, louder, swear if you have to

Being stereotypically British, the thought of shouting at a lovely doctor, who not only works crazy hours doing (what can be) an awful job, but who also has the ability to cure or kill me…? I’m a bit soft, so I bring in the cavalry and ask my Trainer to come with me.

Tall, dark and decidedly Dutch, he was recently nicknamed ‘No Filter Glenn’ for his ability to tell it how it is, no beating around the bush, and absolutely no British ‘fluffiness’. Half an hour later, we emerge from Dr Kerver’s office with positive news and a week off treatment for good behaviour – gezellig!

img_5774
Cross-section of my lungs (looking from my feet towards my head) showing Mutley top right. Left image was 03.01.19, right image was 24/10/18

So the chemo is working

Yep, the good news is that CT scan showed a 17% reduction in size since 24th October (before chemo started). This not only means the second tumour has taken a beating, but any other cells which may be lurking undetected, will also have felt it. This doesn’t guarantee we’re killing everything, but Mutley’s army is getting smaller.

The bad news is that this means I now have three more cycles of Carboplatine and Capecitabine to get through – more chemo. We knew this was a possibility, but having had three already, and being allowed a maximum of six, I now know I’m beyond half way, and can count down to the finish line. This is something I’ve wanted for months, so despite the crap of more chemo, I’ve gone into it fighting.

AN: I’ve also learnt how to politely decline when offered a receipt or carrier bag, remind people to check out on buses and trams, and hand over my Bonus Card when I arrive at the supermarket checkout.

Dancing into the MRI like…

That was week 1. Moving on to week 2; despite having to get to the VU by 08:30 (my body no longer recognises this time of day), despite getting on the ‘direct’ tram (only to find it was on a detour route past the Olympic Stadium), and despite not then having time to grab a coffee before my MRI, I still rock up to hospital on 14th January with a spring in my step.

I’ve had so many scans now, I’m becoming a bit complacent… Would you put all your metal objects into this dish please…sure. Could you climb onto the bed with your head in this cradle… yep. Lift your knees… they’re up. We’re going to put in an IV for the contrast fluid… I hate this bit, but yep, go for it. The earplugs go in, the headphones go on, the protective frame is placed over my face, the panic button is placed in my hand, and I slide off into the machine, as the radiologists take cover in the control room and start talking to me through the headphones…

Can you hear me OK, Rebecca?
Yep.

The first set will take four minutes, please try to keep still.
Two minutes later…
Rebecca, please try to keep still.

OK, the next set will be quite loud and will take nine minutes.
Two minutes later…
Please do try to keep still, Rebecca.
Me: am I moving?
Yes, you’re nodding your head.

This next set will take around three minutes, please try to keep still.
Two minutes later…
Rebecca…
Me: I’m still!
No, your toes are ‘dancing’
Me: does that count? It’s a brain scan, and you are playing Pulp…

I think they gave up at that point, as last set seemed to be over much quicker than the rest.

Dr Google’s Dutch translator

Having completed the MRI scan and made my way home, I then had a week to wait before seeing my Neurologist for the results. However, the following day I got a routine notification to tell me my medical file had been updated and my results were now available in my dossier online.

Well of course I looked, wouldn’t you? I know the results need explanation and context, and I know they’re in Dutch, but I still had to look.

img_5847

Of course, I immediately wished I hadn’t, as my Google Chrome browser automatically tried to translate the Dutch report into English. Seeing phrases like “Question: Residual edema? Possible new lesions?” I started to think (always dangerous with Dr Google), and the excitement of being on the home straight suddenly evaporated. If I had more edema or lesions in my head, the last thing they should do is knock out my immune system with more chemo, they’ll be wanting to get me back into neurosurgery…

I emailed my Neurologist and asked for Monday’s appointment to be brought forward. It was, and I saw Dr Schuur on Thursday instead.

The results are good

So it turns out Google’s translation was correct, but the ‘question’ was not a concern from the new scan; but an outstanding question from the old scan, which my Neurologist was asking the Radiologist to rule out. Which he did.

So my Neurologist is happy that there are no new lesions, and the residual edema is to be expected and nothing to be concerned about. She did a physical examination (the usual tests of strength and coordination) and finished off by saying I’m better than when she last saw me, the scan looks good, and she’s happy I’m fit to drive. Get in!

AN: I can also now count to 100 and spell my name and address in Dutch.

img_5912
Cross-section of my brain; showing (in white) the edema (fluid) which was surrounding Dastardly, (my tumour) and putting pressure on my motor system (thus paralysing my left arm). Left image was 14.01.19, right image was 02/10/18.

So what’s next?

On Wednesday (16th) I started cycle 4 of chemo. My hair is falling out again, my legs ache, my heels are sore, my face has exploded in red spots and I’ve felt nauseous on days 3 and 4.

AN: This has nothing to do with dad being here to help me – so far he has taken the dog for a walk, bought me some fresh lilies, run quality control checks at Gezondigt, popped into Albert Heijn, taken out the rubbish, and is busy repairing broken picture frames (me + superglue was not a wise idea).

But I’m still here, still fighting, and still feel I’m on the home straight. I’m finally off the dexamethasone, the swelling is slowly starting to reduce, I’m walking without a stick, and my Physio has told me I can now use a weight in my hand exercises (much to the excitement / amusement of my trainer, when I asked him to get me some 0.5 / 1.0 / 1.5 kg weights!)

I still have to finish chemo (end of March), then have lung surgery and/or radiation. But by summer, I should be done and allowed to train, travel and get back to work. And as those who know me, know; if I can do all that, I’m a happy bunny!

Can. Not. Wait.

#BoxyOut

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