Regret and what-ifs bubble up at the forefront of my mind. Regret for the things we’ve said we’ll do and never done. What-ifs for everything else. Countless questions, how you doing?!how’s he doing? Fuck, I just want to scream into the abyss and then pretend this isn’t my life. And this isn’t even my illness so I can’t be down. I need to be strong.
If I had taken 10 minutes at the end of 2023 to reflect on the year that had been, I might have arrived at the conclusion that it had been a rocky year. It wasn’t a truly shit one, it was one that had one or 2 more challenges than usual so in general, it was manageable but definitely not one for the books. Between run of the mill household drama (Alex’s teenage mental health was suffering), my sister’s divorce, our South African house tenant up and leaving another cool thousand rands worth of damage to our house, a 3 month debacle of a broken fridge here in France that was only half broken but nobody seemed to be able to repair and the ensuing frustrations of not being French fluent, to disagreements over our summer holidays as to which household was getting more attention, and my own family workplace unhappiness, Anton and I perhaps stumbled to the end of the year grateful we could put 2023 behind us, and we could focus on positive changes to our day to day. Following a workplace fall out in November I had had a “woe is me” whinge and had rather casually asked Anton if we were in a financial position that I could take a sabbatical. Life was so much easier if I could take immerse myself in my own creative space, and I really needed to be shed of workplace toxicity. It was a selfish ask: I secretly wished we didn’t rely on the dual income. I also hadn’t realised Anton was equally unhappy in his own job and was grappling his own work-fatigue concerns. Indeed, while he loves giving training and building up the young field engineers across Europe, Middle East and Africa, and being an enormous source of guidance to many, many field engineers there, he has become increasingly bored doing the same computer work, behind a desk. He would love to be able to be back in the field, repairing the lab pieces with which he has so much experience. Unfortunately his French level isn’t good enough to get him there, and while he won’t admit to this or even agree with me, I think his own mental health took a knock in 2023. So when I had asked about the chances of taking a sabbatical he rather snappily relied saying that even if we could afford it, it was his turn to take a break from work. After all, wasn’t it me who’d been out of work during Covid and had a creative break, as well as a 6 week medical recuperation leave in early January? I couldn’t dispute that, and agreed while getting back in my box, so to speak. Of course, life goes on, and my own day to day went by in its old cycles: wake up to coffee in bed, say goodbye to the hubby and kids as they go to work and school, and depending on my work schedule, either go for a run, do the washing and vacuuming, make dinner, or just watch Netflix and chill, and if I’m home of an evening, enjoy watching tv together with wine and then taking a book to bed to read while I tickle Anton’s back – all the while wishing for something less mundane. Something more. And then preparing myself to be woken up at 5 in the morning for a sneaky roll in the hay so to speak, and enjoyable as it was, did it have to be 5 o clock in the morning? All the while knowing that we often spend Thursday afternoons together without any children coming home and it would be a delectable tryst for him, but an inconvenience for me who coverts an afternoon nap more than anything else on the world these days. So that’s where I mentally finished 2023. Another hand undergone surgery. An *almost* resolute resolution that I would take the medical leave again to sort of my work shit- as in: get a new job away from toxicity. And plans to go euro-trekking in this summer. (Insert expletive here)- did I actually wish for a season without sex? Because that’s what I got. And did Anton secretly crave a change of scenery?Did I actually write the start of a short story that placed me, widowed, in a snowy French countryside?
Last month I wrote Anton had been diagnosed with a tumour on his brain: the surgery to remove it was early March. He ended up returning to hospital a week after the diagnosis and a few days before the surgery, having had signs of a seizure and while he whiled away the hours of boredom in his hospital bed, he decided to share my February newsletter. Subsequently we’ve had such surge in support for us from across the world that I’ve taken to updating Anton’s Facebook with any information that had come in.
Maybe you’ve followed it: yes, most of the tumour was removed. Unfortunately a piece was unable to be removed as it was attached to his optic nerve and would have resulted in loss of sight. However, he came out of surgery with what is diagnosed as “hemiplegia”, essentially the outcome of a stroke and it’s almost like a reparable paralysis, the result of misfiring neurons. He wasn’t able to stand up or walk and thus couldn’t leave his hospital bed for 4 weeks post-surgery. Typically patients who aren’t mobile following surgery are entered into a <reeducation> centre for intensive kinétherapy. Unfortunately the major centres here won’t do re-education at the same time as oncology treatment so we’ve had to resort to a <hospitalisation at home> set up. This has been an eye opening experience, to say the least.
It was after Anton had been in hospital for a month when the doctors gave him a free pass- an exeat- to come home for 48 hours over the the Easter weekend. I feel like there were several angles at play: first off, he needed time away from the ward for his mental health and family time. Second observation – the ward was definitely emptied of non-urgent patients for the sake of nursing care over the long weekend, and thirdly, I suspect it was a way to determine if we could cope with Anton at home. Having him around us and our lives is good for him. I wouldn’t say he thrived- it’s taken time to relearn how we do things as a family, but the 2 day pass was successful and as a result, the social worker was able to set in motion his permanent release 3 days later.
Exactly what transpired in those days is a blur- work being all consuming, managing time and emotions- it gets heavy. Eventually though, between phone calls to me from the social worker and Anton from in his hospital bed listening to nurses, everything was about as clear as mud as to when he would be released: immediately that day, or would the system need to run before he could come home to us? But finally, a phone call from Anton: “I’m in the ambulance, on my way home”. Thank goodness I had already cancelled the second appointment for a mammogram checkup.
The ambulance arrived complete with a packet of paperwork, referrals for nurses to come administer injections, kiné-therapists and a stack of medications, and me, completely unprepared with the skills to follow up.
And when I say skills, I’m referring to my language skills. I’ve had to dig deep to find the courage to pick up the phone and speak in French. All day. Constantly. It’s beyond my kitchen French. And I hate having to speak on the phone.
My first port of call was medicine. A is due to get an anti-clotting injection daily, and 2 times anti-seizure pills. Since we had nothing at home and it was Friday, I had to stop in at the pharmacy and fill the prescription for 2 dozen boxes of meds. I had to explain to the pharmacist what was going on. I assumed the onus was on me to arrange care, and went about asking for a list of nurses in the area. Friends phoned around for kiné therapists. And so we went about the weekend. Alex, having been taught how to inject Anton was able to follow up with that routine.
And then I got a phone call on Monday. A representative from the <HAD> organisation was coming to see me on Tuesday. I’ve learnt that Anton really should have stayed in hospital until they contacted me: it’s their service to arrange hospital care at home. It’s them who arrange nurses to come, it’s them to take care of kiné, likewise any medicine.
Following various meetings in the week, we are where we should be: a nurse comes round every day to inject. Kiné therapists or Occupational therapist come daily. We were even were able to order a chair that we thought would be a reclining armchair but it ended up being a heavy, bulky wheelchair which we really don’t need. (We already have one from the Easter escape, it’s smaller and can fit in the car). In fact, if I need a band-aid, they’ll send that over too.
Being in this situation, needing care, it’s not something I’ve ever had to consider. If we had been in South Africa, I don’t know how different our lives would be. Now, being dependant on others for care, I feel laden with guilt, and so, despite my misgivings on how grumpy and unapproachable people can be in their jobs (it’s such a cliched point of view about the French service industry) we’ve not received one single iota of negative vibes, not one harassed phone call lamenting my poor French, not once single face without a supportive smile. People come and go into my home, pat Thandi on the head to say ‘I’m okay with dogs’ and just chat like I’m not a stranger needing assistance. It’s been so overwhelming with kindness that I have tears streaming down my cheeks as I write about it.
Already in the week past, Anton has pushed his abilities as anyone who knows him would expect. He’s set aside the walking frame and tries walking around the house occasionally without support. He’s able to get into the shower with the help of a handle. We go out for walks in the fields. He’s doing weights to strengthen his arms. He still gets tired. He’s still very slow. But he perseveres.
He perseveres despite my own unexpressed fears: he’s never going to get back onto those expensive bicycles in our garage.
Written more cryptically 3 weeks ago in my FB notes was that the tumour is indeed malignant. It’s nefarious AF. It’s a glioblastoma, the worst of the brain tumours out there. When we were told that Anton had a tumour last month, I took it in my stride. I didn’t jump to the worst conclusion- unlike my family. I tried to downplay my initial fear and it was my brothers’ reaction (normally quite cool and calm) who put the worm in my head that I needed to brace myself. And this is where I am now. Every single quiet moment when I am in my head, I consider the 18 month verdict. Life is very heavy for me. And it’s not even my brain cancer. I’ve seen the oncology schedule: 6 weeks radiation and chemo simultaneously. A month off and then 6 months more. I’m not sure if it’s this type of brain cancer or if all chemo is in pill form these days, but Anton won’t have to endure a day of sitting with a drip at the onco centre. Instead he will need to take a pill once every 6 days (in the second session).
But first, we need to get through session 1. How am I supposed to work, mom, cook and wife with everything that’s going on? I know there are people that can help, but I can’t pass off my role as a mom, nor can I just stop going to work (although the words toxic asshole have risen in that space once again). I do know I don’t have to cook every single meal and we have profited from several fine kitchens from within my circle of friends, and my girls are old enough to help clean up. But I’m still just taking things one day at a time. It’s hard to consider the future when I don’t really know what’s coming.
It’s hard to keep things light at home, so A and I have had some deep conversations about our expectations. He would love to return to SA if these are his last years. But our current medical health is here so this is it. We will embrace it- need to for sanity’s sake. But we do need to find a way to get him home to enjoy the beauty that the SA countryside is. To drive the 4×4 over to the west coast and eat shellfish cooked over coals on the beach at sunset. Or to have biltong and a beer watching Ellie’s at a watering hole in the Kruger. Go back to Dragon View and take a hot air balloon ride over that majestic range of peaks and take aaaaallll the photos we need to remind us of this life.
And even as I say that, will those photos and memories eventually and actually just be too hard to endure?
I’m sorry that you’ve endured reading this. If I even share it, I might regret it. But I can’t keep these thoughts buried inside, and half of this may be a reminder of what the system threw at us. Only time will tell.
Pinot, Bretzels, and Cathedrals 