Pinot, Bretzels, and Cathedrals

A definitive ‘clunk’ and the shatter of glass sounded from the kitchen; an IKEA glass storage receptacle crashing onto my tiled floor, and as a Mother with a Sixth Sense, or merely Having Eyes At The Back Of My Head, I knew that when I popped my head into the kitchen, there would either be conchigliette pasta strewn all over, or red pasta sauce, between the debris of thick broken glass.
And despite the foresight that comes from knowing things, the sight of a puddle of red pasta sauce lying plumb in the centre of the floor with deathly splatters painting the chairs and floorboards left my heart sinking deep into my soul. It was almost prophetic given the appointment we had coming up that morning. In my mind, the red on the canvas of my floor symbolised everything bad, and we were leaving shortly to take A for his MRI to figure out why no amount of medication was helping relieve the debilitating headaches.
Like I said before, mothers have an innate intuition, but even the teenagers weren’t entirely surprised at the outcome of the MRI. What we had all feared 6 weeks before when A woke up retching, my girls somehow knew and they had clung to each other in horror and fear. They knew then the vomiting was a new tumour. Sadly, 2 oncology checkups past, and perhaps A and I downplayed their affect, their effect even, but 2 checkups past and no doctor took caution against new tumours.
On the day a container of red pasta sauce crashes to the floor, the oncologist is able to tell us why A has got headaches, and why waves of nausea left him throwing up toxic liver bile into the toilet. The tumour he’d been treating was still intact, ineffective and contained, but the temodol had not kept new tumours away, and now multiple nefarious glial cells are floating around his brain cavity.
Thus the next phase moves into play, forever marked by the broken container of red sauce painting the floor, as if it was my broken heart bleeding out for eternity.

If you’re still here for the latest updates, let me lay it out more succinctly. I’ve just had to refer back to last months’ blog to see where I was at.

I was at that point where I knew something was up, but I refused to give it airtime, to acknowledge it: that we had new tumours.

Anton had been fighting off what he thought was a sinus headache at first, (for a fortnight) and then a tension headache brought on by having to use a walking frame- as if the headaches were from knotted muscles. He even went to far as to ask his kiné therapist for a neck massage instead of doing his regular exercises. When I signed off my newsletter last month we were due to head in to see the oncologist for a monthly checkup. We discussed the headaches and nausea with him, he was certain that it wasn’t due to tumours, but he agreed to push back the chemotherapy for a few days while we medicated with cortisone to deal with the nausea.

After 5 days Anton’s headaches had became more intense, and I emailed the oncologist with my concerns. The cortisone didn’t seem to have an effect. He called back to say we shouldn’t start with chemo as discussed, and booked us in to see him 2 days later.

By then Anton couldn’t walk into the centre so we took an ambulance and a wheelie-chair to the office. Doc S now was able to see Anton’s pain more visibly. He then prescribed a regimen of morphine painkillers, and booked an MRI for the Tuesday following -3 weeks ahead of the original schedule.

Weary of the implications of morphine, Anton instead asked me for anti-inflammatories over that weekend, and so long as he was able to eat, I let him take it- no doubt against what was medically required.

I want to say strangely the anti-inflammatories took effect and we passed that weekend quite peacefully and happy.

Tuesday, December 10th, the day that my kid broke a container of red pasta sauce on the floor, was the day we had the MRI and have received the worst news.

Anton has tumour-related meningitis.

It’s the reason he’s had nausea, been vomiting and has headaches.

There are new glial cell formations located on his ‘meninges’- the layer attached to his skull, outside his brain matter. It’s inoperable. The meningitis itself could kill him; the only way to extend his life is with a new chemotherapy protocol.

Morphine and corticosteroids had been prescribed to combat the effect of the meningitis.

Whether we had missed a window period to successfully deal with it, or whether the news we’d received affected Anton’s state of mind, I’ll never know but by Wednesday Anton was a relic of his typical self. The vomiting came on without warning, into a bucket by the side of the bed, 3, 4, 5 times a day (I lost count in the end). No food, nor liquid, nor medicine stayed in. The headaches became debilitating, despite morphine every 3 hours.

By Thursday I was a wreck, and wholly uncertain if the cancer centre would advise me how to proceed, or if I should call for an ambulance to admit him in to hospital. I ended up calling the centre after I did not have a rapid response from an email to our oncologist.

And eventually, gratefully, they put things in motion for Anton to be ‘hospitalised at home’- the centre didn’t have a bed to admit him.

Subsequently, I’ve had a nurse come in twice daily to administer cortisone and anti-nausea medication via an IV infusion. It is the only way Anton was able to pick up his head and talk to us. By Saturday, Anton was eventually able to sit up without discomfit and ask for coffee. And food.

But truthfully, that’s where the ‘good’ news ends unfortunately. He’s still a shell of his regular self. He doesn’t have strength to walk to the toilet unaided. His handicap is more pronounced than ever. He eats meals in bed. He is unable to shower. He hasn’t shaved for 10 days. He hasn’t watched tv for a week, he’s not replying to- or even reading- messages. All of these are too difficult to deal with.

Is this, in month 10 of his Glioblastoma journey, the beginning of the end? The doctor says the only way to treat him now is with the new chemo protocol, which is a 42 day cycle. We start today: December 17th. Doc S says Anton is young enough and strong enough to deal with it.

But as I write this update, I’m sitting in a clinic room where we’ve been for 3 hours waiting to hear about a bed. The oncologist has decided it will be easier on me that he gets admitted.

It’s hard keeping myself together.

Am I angry that they didn’t take heed at the end of October when we mentioned it? Or 2 weeks ago for the end November checkup? Am I angry that I feel like I’ve been given the run around?

I probably am, but the reality is: nothing will change what’s going on now.

Still, 5 hours on, there is no bed for him so we’ve come home, hoping for a bed tomorrow. The fact that there are so many patients needing care just reminds me that we’re not alone. It’s important to not be greedy in the light of the bigger picture.

I plan to end this letter here, despite that I’m certain the updates will continue despite me bidding you au revoir for this month. Would it suffice to set up a WhatsApp broadcast channel? Maybe. Or maybe I should just keep this part of the journey to myself.

Needless to say, I’m a little tattered and torn these days, and it’s going to get worse before it gets better. I know this.

If I don’t get round to wishing you a blessed Christmas, please take my wishes now. And may 2025 bring you peace and everything you deserve.

Love,

Me.

Friday update:

The hospital called yesterday to say they had a bed for him so he is now being take care of by nurses and doctors. Unfortunately the meningitis is rapidly taking hold of him and chemotherapy is no longer an option. Day by day since last Tuesday he has fallen further away from his self. This is harder than what thought it would be.