The Hepalogue

Post Traumatic Growth Syndrome – The Testimony of Daenerys X: Part 3

by The Golden Phaeton on 26/09/2016

Continued from Part Two

So how did you come to hear about the new treatments?

“I never really stopped my online research. The extent of it would vary, but about two years ago, I started reading about the development of wholly oral treatments in the US, and of their spectacular cure-rates in trials.

“But I also read about the spectacular prices that were being charged. Of course I held off, I had little option – but I did move on to another doctor who said he would refer me to a specialist when I was ready.

part-three

“I was hoping against hope that the new treatments would come here – but I didn’t really expect them to. I worried that a Liberal government might stand in the way of a very expensive something that did not really benefit their core constituency – so I was surprised, and more than a little elated, when the announcement finally came.

“But even when March came round, I still held off. I wanted to see what others experienced, and for everything to be properly bedded down before I took the leap.”

(By all accounts, there was a good amount of confusion there at the beginning – and I wouldn’t say it’s completely ‘bedded down’ even now.)

“But there came a day, and I made the decision. I told my doctor and he referred me on to the Infectious Diseases Clinic at The Alfred. I was given an appointment for three weeks later.

That’s almost supernaturally abrupt by their standards. Waiting times tend to be closer to three months. (NB: They’ve improved – GP)

“I felt very lucky. Like anyone on treatment at present, I’m privileged to live at the right moment in time, in the right country on a world where modern science – and other circumstances – have conspired to allow us a second lease on life.

“It could have been so much worse …

“When I had my FibroScan, the operator described the plight of some of the patients she examined on home visits. It was sobering, to say the least. She described me as ‘a breeze’.”

How were your results?

“Very good. 4.8 on the scale – which I believe is more or less normal for a woman of my age. My blood tests came back normal too.”

Nothing highlighted in black?

“Nothing.”

Lucky duck. I remember, when I used to sit in the waiting room at The Alfred, it would often evolve into old home week. There would inevitably be at least one old friend to catch up on the decades with. May I ask, did you feel exposed in any way, sitting there – having kept your condition a secret for so long?

“You know, I didn’t. I found myself watching and wondering, as usual. There were a lot of older gay men there. Couples. Gorgeous couples… Coming home, I spotted a guy in the tram who I’d seen at the hospital. There was this brief exchange of glances. Something passed between us. It felt good. A kind of camaraderie….”

Speaking for myself, I’m very familiar with that camaraderie. In a lot of ways it’s sustained me over my journey – the opportunity to exchange notes, to share emotions. It was one benefit of a path Daenerys chose not to take – but everyone finds their own path, for good or ill, and each has its drawbacks and its benefits.

So what were you prescribed?

Harvoni. I remember my feelings when I left the hospital, script in hand. My specialist had described them as ‘little diamonds’ – because of their shape, but I bought into it on another level. I thought of them as actual diamonds, and it excited me. The purity, and the clarity they promised …

You’re a few weeks into your treatment now. Do you feel any different?

“Oh, yes. I feel better, though sometimes it’s hard to say whether its physical or psychological. I’m not as tired. My moods are more even…

“I feel as though my body is regrouping. That everything’s settling into place, back to where it ought to be … As if room is being made inside my body. As if my organs are breathing a sigh of relief … and thanking me!”

Might the whole thing be a little hard to believe?

“Absolutely! It hardly feels real.

“I’m asking myself: who I am now? What defines me now? Suddenly, I’m contemplating a new future – so different to the one I’ve faced for what seems like forever.”

Some compare the experience to a veil being lifted from their eyes …?

“Exactly! I’ve never noticed the ‘brain fog’ that people talk about with Hep C, but, within a week, I was feeling a new clarity of thinking. And of purpose. I’m enjoying how my brain is beginning to function. And my brain is by far my favourite organ.”

And mine too.

“I honestly feel as if I have a new life ahead. That it’s time to cast aside the burden I’ve been carrying around for so long. Forgive the connotations, but it really does feel as if I’m undergoing a rebirth.

I’ve heard there are some who struggle with a kind of separation anxiety – who feel left adrift ,after losing a thing with which they’ve shared their lives for so long …

“That’s not me. I look forward to my cure as a defining point, a springboard from which to launch the next-level Daenerys X…

“This is another example of the privilege I was talking about. It may seem paradoxical, but I think I’m feeling fresher, generally better than a lot of women around my age precisely because of this sense of renewal. I already feel my life changing …

“I’m on full rebound from my relationship with hep C.”

You’re on an eight week course, which is briefer than usual. I can only guess, but – from the duration alone – it seems like your doctor is pretty confident. Have you had any results back yet?

“Not yet. I’m having some tests in a few weeks, just before my birthday. I’m hoping – so is my specialist – that they’ll be a present to end all presents.”

I thanked Daenerys for sharing her story.

I know that each one of our experiences with Hep C is unique, but I found something particularly positive, hopeful, even inspiring in Daenerys’ testimony. I think the concept of ‘ Post Traumatic Growth Syndrome’ encapsulates a kind of optimism from which we could all benefit – imagine ‘flipping’ something as scary as Hep C into something good, and a cure that becomes ‘a springboard to the future’.

Oh, and what’s in your fridge at present?

“Hmmn, I haven’t shopped this week … but there’s almond milk, baby tomatoes. There’s the olive oil I kept after finishing a jar of olives …”

Wouldn’t that be vinegar?

“These olives came in olive oil. Oh, and there’s a cauliflower.”

Are you reading anything of interest?

I’ve got a pile of books on the go. Alain de Bouton’s new novel. It’s about love, and it’s interspersed with fragments of his philosophies on the subject.

Then there’s Rebecca Solnit’s Hope in The Dark, and Conversations Before The End of Time by Suzie Gablik

What part does your phone play in your life?

“I’m determined to manage technology rather than allow the technology manage me. I actually use my phone to help create net-free zones in my personal life – largely because once I have net access, I automatically slip into work mode.

“When I commute, I stay offline. As I’ve said, I like to observe, I like to be directly aware of the real world and the real people surrounding me, a lot of who are lodged in a kind of strained slump over their devices, entirely divorced from their immediate reality. I’ve actually become more conscious of my own posture lately, when I travel, because the last thing I want to resemble is someone half-way down the path to becoming digital themselves …

“I prefer the physical, rather than the digital versions of people – particularly now that, since the beginning of my treatment, I actually am becoming more social, keener to engage with others in real life. Now, and more so with each day that passes, I feel less infectious and more human. I’m no longer polluted, but clean. I am feeling a growing camaraderie – not just with other Hep C sufferers, but with humanity as a whole.”

The Golden Phaeton

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