Pinot, Bretzels, and Cathedrals

Where do I begin today? Do I set the scene for where I’m writing from (in a cancer ward on a chair at his bedside)? Or so I apologise to my Facebook friends that I’ve gone dark? Or do I take the time to reflect on the passing of calendar dates since I rather dramatically announced “this is going to be my last update on Anton’s health”.

Honestly, they’re all so intricately connected and if you were here on my blog right now looking for recipes or my rather dry reflections on life, you’ll not find any of that again. Not for a long time. Instead I’m certain you’re here to find out how Anton is.

I don’t think I expected to be writing this particular collection of words. It turns out that dying of brain tumour related meningitis is not a case of sudden death. Instead it is a very long drawn out period of suffering and waiting and praying and heartache for everyone. And I mean that.

For EVERYONE.

It’s not to say I wanted this to be over with quickly. On the contrary, I didn’t want to have it in my life at all. But when we admitted Anton to hospital a week before Christmas I already knew it was the beginning of the end. Hence my “this is going to be my last update on Anton’s health”, assuming by the time I need to write my January blog post, I would be a widower single mom.

Every day since then I work my way around to this side of town, some days with a meal in my bag, other days with just a water, or snacks, a scarf, a book. In the beginning I would bring a small snack for Anton, but when even the smell of coffee made him nauseous I refrained from bringing anything for him. For a week I would make sure his devices were charged up so he could listen to a podcast or an Audible book, or the cricket, or be able to phone us, but by Boxing Day, he stopped being able to manoeuvre his way around his earphones, or his iPad, so they have all been muted and I should probably just take them home.

Time has become irrelevant mostly. Days became weeks. Weeks are now already a month. More than 28 days since news the new tumour. By the time I share this, it will be 28 days since he was hospitalised. That’s 28 days of gradual decline in every way. Where one day I could help him to the toilet, the next day toilets were filled in a bottle, and 2 days later a catheter was placed. One day he could sit upright for periods, the next he chose to lie down, and within days, he was just sedentary. He’s gone from drinking water from a glass, to a sippy cup, to not drinking at all. The last piece of food to pass his lips was a small tub of yoghurt 3 days before New Year. The last coherent conversation we had was me telling him his Aunt had had a stroke. Since then we’ve had him ask us when are we going to disembark the plane, him telling me he needs to take some time off to go and find himself. (Apparently that will be at a campfire, having a braai with the guys), and that we need to start disciplining our girls with swords.

And then there was an infection set in: unable to manoeuvre his body, he was unable to dispel vomit, so probably swallowed it, into his already ulcered oesophagus and stomach. A slime-filled chest, a fever spike, agitation – it felt like we needed to say our farewells. But then every day we leave, we say goodbye, not so certain our “love you my angel/Dad, see you tomorrow” will be fulfilled. The infection is under control, but now he’s on oxygen, and has an air mattress to manage bed sores. A string of tubes keeps him comfortable: saline hydration packs, anti-nausea, anti-seizure, corticosteroids, antibiotic, paracetamol and caffeine- the most effective apparently. And morphine.

10 years ago my Mom died from cancer related complications. Her last days were of her sleeping with oxygen in her nose and a morphine patch administering pain relief. She died at home in her bedroom 10 days after being released from hospital, 30 days after they started treating pleurisy on her lungs, probably 18 days after she’d had a heart attack. I keep trying to draw parallels between these cases. So seeing Anton with the oxygen tubes makes me think it’s the end. That soon there will be relief from this pain, that this surreal part of our lives can stop. But dammit- his heart is strong. It’s the cycling isn’t it?

He doesn’t talk anymore. Sometimes he acknowledges us, and it’s all I can do but sit at his bedside and write my emotions out in Plathian extremes. And cry.

I cry because seeing the man who has been at my side for twenty-plus years is no longer at my side. I cry for the shell of his body that isn’t the powerhouse it used to be. I cry for my children who no longer have a father. I cry for the friends who come and see him, and leave with tears in their eyes, never imagining that this would be the end, never began to consider him not being around forever, a man who’d had been a part of their lives for 2 decades. I cry for his family who can’t be here, who didn’t know when we said goodbye at the airport in August that it was the last time. I cry for their pain at not knowing. I cry that I let my guard down in April and we lived through the summer and autumn.

Movies and books perhaps make us believe that bedside revelations and dying declarations of love or secrets are commonplace. That we get the closure from our loved ones as they fade away, that we can continue in our own lives journey in peace. I call bullshit on that. Already I can’t remember the last proper conversation we had. (And not just sharing the news of his aunts stroke). It may have been a conversation about cricket. Which sounds about right. But he didn’t tell me what traits to look out for in the boys that my girls might one day bring home. He didn’t tell me to go and enjoy an exotic beach holiday with the insurance money. He didn’t leave me with words to say to his parents and sister that they can take with them wherever they go. I remember lying in my mom’s room in the week before her passing, wishing that she would also speak to me. Leave me with words that I could hold in my heart forever. Not even Mom, capable of those words, was able to speak them. Is this one of the saddest aspects to this journey?

I’ve been on the receiving end of so much love and help from our friends here. Coffees at the hospital, meals brought to me here, comforting and distracting conversations, transport lifts, and advice. Some days I don’t know if I should encourage visitors, other days I don’t, knowing how soul -darkening it is seeing him, some days I sit and cry, on other days we speak a little too loudly and guilt rushes through me for having a laugh. Some days I want to be here all day, other days I need to be home or go out for a meal, and again, guilt overwhelms me. But the advice that has stuck out is a reminder to me that there is no right or wrong way to deal with this. I get to feel absolutely anything and everything I want. Because we just don’t know what to expect and how many days I still have with him.

I know for some of you this isn’t news, that you’ve allowed me to pour out parts of my soul in keeping our close friends updated. Thank you for everyone’s support, prayers, and friendship.

All my love,

G.

Xxx