Highs and Lows

In Australia, Father’s Day is celebrated on the first Sunday of September, and last year, we were exhausted, but pretty upbeat. Kind of..

This year was vastly different, so I have had to take some time away from here.


The neurologist who saw Thomas in the ED was also pretty much on-board with the ADEM diagnosis.¬†https://en.wikipedia.org/wiki/Acute_disseminated_encephalomyelitis) is a good reference for it. And I wasn’t to cancel our European trip yet: “The steroids should work quite quickly, and if he responds the way we’ve seen kids respond, you should still be able to head off in 10 days time.” “What?? Really?!” Thomas was visibly impressed, and relieved, too. Obviously, though, tests would need to confirm that, as well as rule out other possible diagnoses.

Over the next couple of days, investigations galore were performed. They needed 3 ‘clear’ lumbar punctures – no lymphatic or other cancer cells or infectious microorganisms to be found – before they started him on high-dose steroids, aiming to arrest the inflammatory & demyelinating process.¬† Done – all clear. Only inflammatory changes could be found, confirming ADEM. Yay!

The danger of the high-dose steroids is that because steroids inhibit the immune response, if you have an infection, or a cancer, this can kill you. Because you’re stopping your body’s defense mechanisms. The other issue with high dose steroids is you get a ‘Roid High (Roid Rage is the violent expression of the syndrome), and become ‘unmanageable’.

They gave Thomas his first mega-dose of MethylPrednisolone on that first Friday afternoon after admission to hospital. He’d relinquished his control over his fate, initially in shock, but relatively agreeably, with relief, over the last couple of days. “I have accepted the sick role well, I think” he said. Repeatedly.

As the steroids went in through the drip, his mood became more buoyant, & chatty. He was great with the girls in the afternoon, and I then took them over to a friend’s house for the evening, before heading back to the hospital. His parents came in to visit, and we were all a bit upbeat – the news was good, Thomas looked & sounded better, a bit fidgety and animated, but nothing too bad, & we all started to have hopes. Then he started talking about going to Europe in 8 days time.

His mother said No!!! “No, you’re not going away! You need to stay here!” Thomas blithely ignored her concerns, & kept talking about going to Europe. He was high on steroids, but she didn’t know that. And so she lost it. This tiny little 75 year old woman lost it so badly that she picked up that heavy hospital bed at the foot, with Thomas lying in it, and shook it & slammed it again and again, screaming at my husband, her 46 year old son, that he was to stop this nonsense talk. Then she turned to me, shaking her fist in my face, hissing “I will Get You!! I will get You!”

After she’d stormed out with my father-in-law in tow, I looked at Thomas, and he smiled cheekily. “Ooops” and giggled.

Oops, indeed..

Please, don’t panic. I’m not going to give daily updates of the minutiae of Thomas’ illness. I don’t plan on continuing the daily entries.

It’s just, I’ve been pretty shaky the last month, and I think I need to get this stuff out on my own, not teased out by a third party. So, whilst I say these daily updates won’t continue, they will be driven by the degree of fragility I feel, & who knows when I’ll need to get it out..?

The other thing is – this actually may be useful to someone. You, or someone you know, or have connected with. So, I’m happy for you to share this. You never know who it might help. Yes, this is for me. But we’re all in this together, aren’t we? Life..

So – how did we get to this place? No, it didn’t happen overnight.

As I said – it all started with insomnia, in March. Which we put down to stress, & being too busy with life. And that’s pretty much how it continued. We started from the premise of Insomnia, & that created a bias in our thinking. All our actions after then were guided by that premise of simple Insomnia.

When there were no Mother’s Day presents for me in May, his excuse was that if the girls really wanted to give me presents, they would have gone shopping themselves. The girls were 13 & 11, so were unable to get to the shops without a parent driving them. We talked about this Apathy, that engulfed him in many aspects of his life at that time, & he said “I know I should care, but I just don’t.” We both put this down to chronic exhaustion, caused by the Insomnia. Surely you can understand that?

There was another apathetic incident in early June, but again, he was exhausted. He’d slept so poorly for 3 months, of course he’s having trouble ‘giving a shit’.

So, how to fix this? He was terrible at eating breakfast, so I started baking wholesome, healthy things that could be frozen, & then reheated quickly in the microwave, or just defrosted on the bench overnight. I got up earlier, to make sure he had carbs, protein & fruit for breakfast, before he left for work at 6:30am. This was to reset his biological clock, to kickstart his metabolism, so that his body knew when it was wake time, & then would re-learn its natural ‘sleep time’. He also put himself on Melatonin, to help with resetting his body clock – just like you do if you need to overcome jetlag in a hurry. Minor successes, but an overall slow slide further into exhaustion. I urged him to book in for sleep studies, but he didn’t have time, because they were only doing them on week nights, & he needed to be fresh for work. Ummm…

We talked about stress, was he depressed? Was he unhappy in our marriage? Was he unhappy with his work? Was he worried about work? Did he want a divorce? Was he just Unhappy? Resounding no, to all of those, & more, questions. Awful questions. He was shocked, & cried, when I asked him if he was tired of me, or if he wanted out from the family. His answer was that we were the things he was most interested in. The things that kept him going.

The reflux became evident in July, just occasional coughing at meals “it’s just my reflux.” He started taking medications for that, I stopped giving him carbonated drinks, & he was a bit better.

We were booked to fly to Europe on 13th September last year, on a trip that he & the girls had spent almost a year planning in minute detail. I was essentially tagging along for the ride, but had said that Rome was on my Wish List, if we could fit that in, because I’d not been that far south in Italy. The rest was up to them.

He got home early on that 13th August, around 4pm. He was sitting on the sofa, & I rang the GP. When the receptionist answered, I handed the phone to Thomas, & told him to make an appointment to see our doctor. He scowled at me, & told the girl he didn’t have his diary with him, but would ring her back. We sat there, in silent combat.

I said “Why aren’t you seeking help? Are you scared that you’ll get a diagnosis that will stop us from going to Europe?” He seemed stunned that I’d guessed, & said “I just need a holiday. I’ll be okay after some time off.” “But what if it’s just Reflux that’s waking you overnight? What if it’s just an ulcer, that can be cured with a week of antibiotics? Why can’t we just get a diagnosis – it might be really simple! And the fear will be gone! We have a month till we leave, and it could be fixed by then.”

So he rang the Endoscopy clinic for me, found out who was doing each list on the free day he had coming up, but he didn’t know either Specialist, so said he’d ring them back when he’d talked to colleagues. But he never did.

Memories of these conversations, quite risky conversations, are what’s been making me so jittery this last month, and why I’m here, now.

Dodging Bullets

No beating around the bush.

The report wasn’t on our GP’s computer, so he had to ring the Radiology Clinic while we sat in his office on the morning of 2nd September.

‘Most likely Diffuse Glioma, with five definite lesions, possibly a sixth. The two largest lesions are in the Brainstem, and another large one deep in the Temporal Lobe.’ There were kinder Differential Diagnoses, which were fairly decent options, but the Radiologist wasn’t convinced.

“I’m so sorry – which neurosurgeon do you want to go to?”

Our choice, Jeff, could see him tomorrow at 5:45pm. 30 hours away.

Fuck Cancer.

I drove us to Thomas’ parents’ home. What else could we do? No beating around the bush. Simply heartbreak. And they went to the stove, & cooked. Seeking solace in the familiar, while also nurturing. I loved them for that. I remember the smell of burnt garlic & rising voices, as I took Thomas’ phone from him, & rang the other Neurosurgeon that was both technically excellent, and a good friend. No way was I going to make us wait another day & a half, so I was going to call in every favour I could.

“No, Jay, it’s not Thomas, it’s Vivienne. Yes. No – things could be much better.. ”

Jay was in his Rooms, doing paperwork, so looked up his scans on his computer as we talked. “Hmmm… this doesn’t look like Glioma to me – there’s too many of them, not a single mass. Glioma doesn’t do these satellites. I think this is A.D.E.M. – a post viral MS-Like reaction, totally curable. Pretty rare. He needs a Neurologist, not a surgeon. But he needs to be in hospital, now, because he’s very sick – the lesions are extensive. Call the hospital, ask for this guy… Get an arranged admission through the Emergency Department. Now.”

I had to impersonate Thomas’ secretary making a professional call, in order to speak directly with the Neurologist. I apologised for my ruse, but filled him in, using Jay’s name & words repeatedly. He eventually understood, and told me to bring Thomas to the hospital immediately, & the Neurologist on for the day would see him in ED, ASAP.

As I bundled the love of my life into the car, I marveled at our luck. That was a big bloody bullet we just dodged. Fuck Cancer!

So, on our way to the hospital, we talked about how we would change our life, taking more time out for each other and the girls. And for life. I extracted these promises from my husband, and promised to help him keep them, as we drove into the abyss.

Transition Day

I managed to get the first appointment on the Monday morning, a year ago today. I dropped the girls at school, and came back to take Thomas to our family doctor. After a thorough history and examination, he said there was enough vague neurology to warrant a scan. It took a lot of calls, but I hustled his name onto the last Urgent MRI slot in the entire city late that afternoon.

The conversations you have when there’s a lot of worry, but nothing concrete, are quite bizarre. It’s like your brain becomes constipated, because you’re trying very hard to filter out the fear, and act normal. Inane topics suddenly become urgently interesting. As if neither of you notices that which cannot be mentioned.

When the Radiographer walked Thomas out after the scan, I asked her how it looked. She should never play poker. Ever. Not even for matchsticks. Eye avoidance as she said “oh, I didn’t see it, so I couldn’t tell you.” Radiographers always check each slice on a scan, to make sure they don’t have to repeat it. She should give blackjack a miss, too.

Of course, Thomas being a doctor, and me a Critical Care Nurse, we opened the X-Ray packet as soon as we were out in the sun. Of course. Because we have decent skills at reading X-Rays. But, patches on the scan were put down to odd scan angles, or unclear light because of the trees in the carpark, so we decided we should wait until the Report, tomorrow. What did we know – we weren’t experts..

The big white X-Ray packet was a huge presence in our home that night. A very unwelcome house guest that influenced everyone’s behaviour. We were alternately subdued, diligent, tender, and loudly cheerful. Definitely not our normal casual vibe.

We didn’t know that we wouldn’t be returning to our old normality. That we’d never feel casual about anything again.