Pinot, Bretzels, and Cathedrals

Exist in your anxiety and anger. Even for a short while..

Somewhere in the recesses of my mind I feel like someone in my life has once told me that if I am ever angry, or anxious, before blurting out those feelings, that may possibly negatively affect people around me, it’s wise to write things down. It helps to work through your feelings, to clarify thought processes, to discover the various parts that make up the whole. For the most part, I find this to be a helpful practise in so much of what I have done in my life.

This September, with her New Beginnings (post-summer, new school term) and Supermoon status, she has rendered more than one occasion where I’ve had to take myself off for more intimate chats. Either with my sister, or I’ve taken long walks to work through my angst in a voice note or 10.

I’ve scribbled notes everywhere. Case-in-point: I’ve rewritten this update 3 times, saving all my previous attempts as rough drafts. Even now as I type, I wonder if it will make it on the page.

And let me be honest: I’m not one to really attribute my feelings of insecurity, unease and angst to the full moon. It’s just not my vibe. Yet, as the Harvest Moon reached radiant splendour, complete with a partial lunar eclipse as well as having the status of a being a Supermoon, Anton’s impending imminent MRI scan and of course, my own hormonal cycle, well, life seemed to literally leave me well and truly cassé which is French for broken, and somehow the softspoken inevitable finality of the French word says more of my state of mind than the English word.

This month I’m writing about me. Time and time again, friends have asked how I am doing, what is my mental health like? Setting aside the initial shocking diagnosis of a glioblastoma in March, what could I do other than tackle the situation head on? Nourish, care, communicate, all key words that many of us understand as part of our lives. Mostly it’s a ‘I’m a mother’ thing. It’s what we do, and when we can, if we can, we take time for ourselves.

For 6 months I feel like I lived a rather surreal existence: couldn’t quite fathom this was part of my life but there was no ignoring it. It’s surreal, I guess, because I’m on the edges of something quite enormous. I’m not the patient. I’m not going through chemo. I’m not suffering a disability. I’m not trying to figure out what’s going to happen to my family if when the tumour eventually wins over (because statistics show that it will).

Oh, hang on. That latter is my cross to bear. But that’s for Future Me, because Current Me exists in a convoluted paradigm within an intricate framework that is a foreign country. And that space comes with and entire cargo of baggage that I never imagined possible.

Yes. Because when your partner has cancer, is on chemotherapy, has a physical disability and your family live 9000km’s away, life is hard.

It’s hard because feelings of inadequacy run rampant. It’s hard because feelings of resentment encroach like a fire on a brittle, dry escarpment. It’s hard because we don’t speak, and we’re too scared to ask for help. It’s hard because I feel like I’m not enough. It’s hard because chemotherapy is shit, and it sucks everything out of you. It’s hard because I didn’t see it coming. It’s hard because for months we don’t know what happened to the cancer cells, and the first post-radiation MRI scan has been delayed by holidays.

To put this into perspective, imagine Your Truly sitting in a clean clinical oncologist office in the weeks following radiation. Anton is hunched over in the chair next to me. He’s hunched over because of the disability, and the tiredness that seems to overshadow everything nowadays. He also has a tendency to zone out in the presence of the oncologist who is less inclined to communicate in English (despite actually being quite able to speak our language, but I get it- I always revert to English in the face of Afrikaans being spoken) and it has become me who now deals with the specialist. On this particular occasion we were talking about the next step on this journey: radiation therapy was coming to an end. We would then be continuing with 6 months of chemo, albeit an increased dose, taken for 5 days every month. It was at that point that I asked what was Anton’s prognosis; his life expectancy because if you burrow down on glioblastoma research, you’ll see the average stats: 80% of glioblastoma patients get to live up 18 months. 5% will get more than 10 years. Macabre to be asking this, but in the light of our trip to South Africa, I wanted to be prepared.

The answer? Vague at best: Dr S shrugged in that typical French manner and simply said that he wouldn’t determine anything before looking at the follow-up MRI that should be on the cards in mid-July (which we had to push back to our return from South Africa, thus adding almost 8 weeks onto our waiting time). In other words, there are no physical symptoms that we would see that would indicate if the small mass of glial cells lift there during the surgery were effectively being reduced by the oncology treatment.

In hindsight, I probably knew that it as too early to see or know anything. The reality is that cancer as a disease takes time; typical journeys are ongoing and a mere 3 months post-op is not going to tell me if we get 18 months or 5 years.

But that’s hindsight.

What we did was travel to our homeland, we spent weeks with our family there. We tried to soak up as much as we could, albeit with a shadow of our burdens tucked in at the back of our minds to remind ourselves the reality.

And so September arrived. Far, far away from our family. Far, far away from those people that could hold me together if/when I was about to fall apart. September, when half of our house picked up regular life-cycles and the other half left to dwell in our thoughts: mine questioning if I should find work and seek out some normality, his focused entirely on the upcoming MRI scan.

We drifted apart, more than we have in this journey. By the time the scan day arrived, I had cried in the shower every day for 2 weeks trying to hold myself together, and the notion of trying to unburden myself of the focus of my attention was wholly unfair. For 2 weeks I felt like my world was splitting at the seams like an old leathery cricket ball in the clutches of Dale Steyn at practise.

And just then when I thought I couldn’t do very much more for myself, the MRI results came in: no tumour growth in the 6 months since surgery. The supermoon had begun to fade. My rapidly approaching pre-menopausal body succumbed to her hormones, a joke and a smile retuned to my husbands’ face and he would reach across our bed again, take my hand, knowing we’re in this together.

The end of September marks 18 years of marriage. Do I find myself questioning if we’ll see 20? Of course I do. Should I do it? That is something I can’t answer.

What I do know is that the current chemo dose – the maximum that Doc S will allow- definitely takes its toll. Anton’s ability to move fluidly has regressed and for 2 weeks following Septembers’ dose, he took to bed with very little desire to move. It is quite devastating to watch him without energy, his sense of taste skewed, uncommunicative to a point- is there any wonder I caved a little?

We should be following a schedule of one week on, 3 weeks off chemo, and repeat. However a fortnightly set of labs showed that his leukocytes have not quite replenished to the desired parameters, hence we are not kicking off again to start October with. In the mean time, a quick study shows we can boost protein intake to up his white cell count, so we’re going into a week of fish, chicken, eggs and maybe a highly desirable steak toward the end of the week. I’ll throw in spinach and broccoli and beetroot – all cooked as simply as possible as Anton can’t cope with rich or spicy food any more.

It’s obviously the end of September already. It’s been a month, I won’t lie. Fortunately most of my anxiety has abated and I’m optimistic that I’ll cope with what is to come in the weeks ahead.

And to my love, if you’ve taken the time to read this, Happy 18th Anniversary. I love you and will be by your side forever.

Xxx