Pinot, Bretzels, and Cathedrals

My dearest friend,

It’s confession time: I appeared to have picked up an annoying habit of reading some WhatsApp messages- those kind from caring friends, checking in with us, and after realising that it’s important to spend time on a focussed response which is somethings that is not fluid at the moment, I subsequently decide to mark the message as unread, a way to remind myself to reply at a later date.

And then I completely forget about the reply.

Nope, I don’t really forget. I am just horribly lazy when I’m on my phone and instead of sitting here, taking time to interact and share news, I put my head down and simply peruse silly videos on instagram as if I’m a teenage junky.

It turns out 12 unread messages doesn’t seem to bother me immensely and I’ve become quite adept at ignoring the glaring red circle screaming “unread messages”.
And it’s not like I’m even busy with life.

Except 12 unread messages has recently become 13 unread messages and it turns out, that’s the kicker for me.

So here I am, sitting in bed waiting for the sun to come up before I chase my bad habits around the forest for a little cold run, and taking a moment of quiet to try put some words on paper. The sun is actually going to be visible today, despite the snow fall flurries last night. I can see the fiery sunrise glow-up out there across the Rhine. What is the shepherds’ adage that talks about red skies in the morning? Are we in for a day of circumspect weather? Nonetheless, I expect a forest run will be inspiring despite my complete lack of desire to go out into the cold. Besides, it’s been a full 20 days since we last glimpsed the sun, so profiter I shall.

If there’s nothing else disciplined to my weeks at the moment, the one thing I try to push onto my agenda is a run.

Just once a week.

And if that goes out the window, I don’t know what my state of mind will do to itself. As it is, I spend some weeks questioning current life choices, and let’s be honest, I don’t really have capacity for those right now, so a run on sub-zero winter morning it will have to be.

The month that has passed has been a mixed bag of emotions and actions. The emotional side has been fraught with me fighting the devil in my ear, the actions bringing a stark contrast of doing nothing important and necessary and everything fanciful and flighty.

Having taken every possible action to attempt to register for a (taxpayer benefit) French language training program, a rather specific item on my To Do List while in this era, I’ve had to realise failure. My issues rest in the necessity of validating my account, as the government portal to do so is exclusively web based, without any ability to see, speak to or email anybody. It requires using my phone, 2 different applications and scanning my residents card, and of course, filming myself in profile. I have attempted to do this 10 times. To no avail. I tried a follow up at The Post Office as their application suggested, only to be informed my resident card was not a format their application recognised. It’s valid for 4 years, as per our visa status, and there is literally nothing anyone will do to assist. Even a follow up visit to the Unemployment Office cannot help, so despite their expectation that I need to follow some training program, they simply cannot help in my situation.

Honestly, the blatant disregard and lack of as empathy has left me feeling quite helpless and low.

In order to lift myself out of a hole, I reached out to my crew, and then spent a week having meals away from home, conversations that made me feel a little more mortal, because normal is anything but. For example, I used to be able to write with a poignant amount of thoughtfulness, and even that skill has deserted me: it takes an effort to carve out the creative spirit of my previous scribblings.

As for Anton, I would best be inclined to caution you: I don’t really know what to offer as news. Simply, he is ‘getting by’. There appear to be no enormous changes in his health, either for the good or the bad, but neither do I have any clue as to what is normal and what isn’t.

Shortly after my birthday last month, the week before he was due November Chemo, he woke up violently ill. There’s nothing quite like a 6am wake up call to the sound of soul-sucking, unrelenting retching. And it came over like a freight train- fast and out of nowhere. No nighttime cramping or discomfort, just a wake-up call with a wave of nausea. My immediate thought was that he could have picked up a gastro bug the day before as we had had a surprise tea party for my birthday, and my lovely crew joined us for bubbles and scones. But, and I apologise for the details in this, the contents of the upchuck was exclusively liver bile.

When it continued in this way for more than 3 days, we realised it wasn’t gastro. Exactly what is going on remains a mystery.

Sporadic, random, not related to food intake at all, the waves of nausea come with a sensory impact: the smell of coffee, or fresh herbs, anything intense from my kitchen in fact, cold weather, even some rapid movement as if vertigo were an issue. Occasionally the nausea will flood over and he can take a few deep breaths and it will subside. But when it doesn’t, he finds any bit of liquid content gets upended, and it’s followed after by a rather long nap.

This current condition is weighing heavily on my mind, obviously. We mentioned it to the intern oncologist last month, although it was a new symptom and we put it down to the social gathering. At the time, his recent set of lab work did not indicate that anything was amiss.

During the month the symptoms have come and gone ad lib and we simply take it in our stride. We (from different viewpoints) endured a rather embarrassing birthday affair when we invited a new Sud Af family to town: Anton, floored by the nausea ended up retreating from company at lunchtime; myself, left to entertain relative strangers or the Sud Af guests, completely unaware of our current brain tumour status.

We’ve I’ve given up trying to pinpoint its origins. I’ve decided (and I don’t know for certain,) this is result of a build -up of the 5 months of chemo meds, despite not experiencing the typical nausea and vomiting from the beginning- that of what IV chemo patients endure. The oral brain tumour chemo meds are not the same as other cancer IV regimen.

Meals have now become smaller for him: he eats, for which I’m grateful, because this is so important to me, but it’s a quarter of what he used to eat. And obviously I am cautious about what we serve: no cream, no spice, nothing too intense, nothing too rich. I even have to be aware of how it’s served: it’s been longer than I care to admit that we share our meal around the television at night, from the comfort of our couch. He can’t use a knife and fork, so his meals are generally served from a bowl: it shouldn’t bother me, but it’s become the norm.

And then, we almost tiptoe around eachothers desired space of need and mutual respect. He almost never asks me for anything, and I find myself having to anticipate his needs: breakfast with tea, mid morning espresso, lunch, water, an afternoon treat of a simple biscuit. I can admit that he doesn’t raid my pantry any longer, has no idea what the state of the fridge is, or where to find the chocolates and biltong.

Medication is administered by myself as well.

And I hate that I’ve become the person to clean up after him, that I have to remain so patient. Our Boomer Generation mothers might have stood for it, but certainly, every other generation person might be horrified at how I end up picking up his laundry from the corner instead of simply taking it from the laundry basket; cleaning vomit from the walls because despite him trying to clean up afterwards, (he doesn’t see the canvas of the spray); making the bed and fluffing the couch cushions every single time; asking him to change a sweater because the one he’s wearing has food all over it.

Look, it is obviously very shit to be in his shoes. It’s why I try to tiptoe around- for better, for worse, right?

Obviously you know by now I never managed to finish this in the minutes I took waiting for the sun to rise and go for a run, and it’s now Sunday evening. Thandi the Bandit is neatly curled up alongside me in bed and while I’m tired, my mind won’t settle.

Am I seeking forgiveness from you my love, who might end up reading this whole essay and be annoyed that I’ve overshared and admitted to some annoyances?

Or am I simply regretting these words written, this admission of all these feelings? It feels like if I keep them in my head, they’re not real, but by putting them down on paper I need to answer the questions.

I’ve never sought out online forums in “how to cope with brain cancer if it’s your loved one”, assuming it’s because I don’t want to share other people’s grief. Perhaps I should have, perhaps others’ lived experience will validate the experiences I find myself questioning. Perhaps, though , by exploring our day to day, by journaling it, maybe one day my words will bring solace to someone else.

What isn’t spoken about is how the load needs to be carried. Anton is no longer my partner, even though I do know that I can ask him to help with one or two jobs: I need him to be present in car with me when I drive to the shops, and he will do whatever he can to help. But that doesn’t change the fact that I’m his carer now, at some level anyway.

Aside from being The Wife, I’m also Mom, Chef, Cleaner, BFF, Chauffer, Gardener, Admin Secretary, Dog Walker,…. The list goes on. This isn’t acknowledged when a partner is enduring chemo. I’ve gone from being a wife in a couple to a single parent and it’s leaving me sitting in some type of existential crisis. Would I ever do it all again like this if I knew what was coming?

In this week of late November, we’re heading back to the oncologist for the monthly checkup. We’ll find out if Anton can do round 6 of chemo in early December. At the end of December he has another MRI scheduled. These will be undertaken every 3 months going forward. I’m not expecting anything particularly exciting for the December one- I expect the tumour will be marginally smaller but still present.

I am praying though, that there isn’t a new tumour. And this concern is present because of the nausea and vomiting. They’re both symptoms of a brain tumour, but whether it’s possible a tumour could somehow exist under chemotherapy conditions I do not know. It’s a niggle that rests at the back of my mind, I’m weary to give it ‘airtime’ but want to protect myself if necessary.

How the oncology team will move forward in January remains unclear. We expect the next chemo session to be the last, but then what? Perhaps it will be a question I can raise on Wednesday. By the time the March scan arrives though, having gone without chemotherapy and radiation for 3 months, this will render the true mettle of that mass of glial cells.

I want so badly to be past this era but the truth is, it’s still early days. We have so much to go through still. Ups and downs, frustrations vs fulfilment, tears vs laughter: if there’s nothing else normal about cancer, it’s the some days are good, some are kak.

* (return to Friday’s scribble:) Aside from that we’re now officially gearing down to Christmas. The market opens on Wednesday. It follows the 80th anniversary of Libetation of Strasbourg festivities on the weekend- 80 years since the city retook their French identity from the Germans. Emmanuel Macron is going to be in town and I feel like I should make an effort to go into town to observe. But trams are going to stop running and they’ve even blocked the city centre from cars (obviously) AND bicycles so who knows if it’s worth the effort of travelling the 7k’s to town 😂. Still- it will give me something to do so perhaps I should make the effort.

The sun is just about up (I’m already counting the days until the next solstice) and I realise this is about the most news I’ve written to anyone in weeks. I may just copy/paste these words to my blog (with an edit)

27 days until the Solstice. 30 until Christmas. 37 until the next MRI. It’s how I keep track of cycles these days.

If you’re still here, thank you for taking the time today. Being able to pour these thoughts out is remedial, knowing there’s someone taking the time to listen is a blessing.

Until next month ma chérie. Je t’embrasse.

Xx