A star and a compass

After nearly five years in the somewhat intense world of advanced medicine, you get a lot of experience of all levels of the training of medicos, from students dutifully trailing behind specialists, all the way to “I just got a really good posting, goodbye”.

In the middle of this there are a lot of medical registrars. A lot of them: we've had them in gastroenterology, cardiology, immunology, renal – not to mention the suffering and sleepless registrars that staff the emergency departments, and the harried, apologetic registrars in ICU.

Some seem to be merely meat in a sausage-machine of training, but very occasionally, from the patient side, you get to see the genius, the stand-outs that you know can do well, because.

Because they're more thorough than the rest.

Because they care more than the rest.

Because they know more than the rest.

Because they fear more than the rest.

It takes its toll.

You, the public-hospital registrar of yesterday's visit, you are suffering and we see it. You've got too many patients who will die before you get to replace “registrar” with “specialist”, but since it's your third return to the same place, Ms T and I suspect which specialty has caught your passion.

You're young – I don't do well at guessing age, but you're about 30 – and your hair is greying too fast.

Your face should be relatively unwrinkled, but you scowl at your own decisions and doubt your reassurances that things are going well. So it's not.

You try to cover your forehead with your hair, because you don't want us – the patients and their carers – to see how much you wrinkle your forehead when you're fretting about what will go wrong next.

We see this, because we've seen you when our lives were at their darkest.

You once hugged Ms T when you apologised that you couldn't do more.

You fret and frown and add another grey hair when choosing between an X-ray or a CAT-scan (one is less sensitive, the other has more radiation).

You worry and apologise and fret and hug, you think and calculate and worry some more, and it's makes you better and kinder and more loved than those who live their lives in a sausage machine.

You're going to do good, and with a little luck and opportunity, you will be great. But it's going to hurt.

You can't save everyone, and every death will hurt, because that's already the story in your eyes.

But there's this: there will be wins and lives saved and families preserved. Lovers will love, children will grow to adults, and their lives will be your reward.

Your care, your fanatical attention to detail, your shining intellect – one day, a leap of intuition and a guess that “we should check that” will mean someone will send you presents each year because they or someone they loved got a life they didn't expect.

Treasure that, and make that your star and compass.

Ms T and I know that it's more than likely, one day, that someone will have to let a hammer fall. Know that if it's you that pronounces the dread words, says “I'm sorry, but ...”

If someone has to say it to us, we'd not just forgive you if it were you, we'd love you for taking the burden of saying it. We'll still know that we were lucky to know you, because we know you'll do good in the world.

But it's a burden to you, and we know it. We hope the burden doesn't break you, because in your future, the patients you save will love you for it.

We do. 

Bravery: Friends are better than "narratives"

When friends talk of strength and bravery in the face of illness, it's a blessing, even though Ms T and I aren't brave.

Well, perhaps we are. Perhaps I am. I try. I get there sometimes.

There are the other times, though. The times I'm not brave: wishing things were otherwise at 2am, wanting a life less lonely, hoping the latest lump is nothing (it was nothing, this time), lost in the concentric circles of cascading cares.

When an old friend like Sarah (not her real name and not the same one as either of the other two) has a longish public conversation with me, spending most of it with at least one arm around me and often both, and talks of bravery, it's a support and a blessing. I know Sarah's battles – with cancer, a long time ago – her recovery, and she knows ours, and when she blesses our courage, it's in the context of a friendship of more than twenty years. Were I to break in the face of the enemy, falter in my resolve, cry in a corner, whatever: Sarah won't despise me for it, because she's a friend.

There's another bravery out there, and it's not a support, it's a burden.

It's the bravery not of a friend's arms, but of a pop-culture narrative. The pop-culture bravery, the “plucky survivor” narrative, given extra human-interest colour by the “never-say-die” carer who juggled everything, held it all together, smiling at the five-year mark as they embark on a new journey. Hooray.

Behind the cheery smiles and the media-constructed narrative are imperatives that have hearts of flint and do not forgive: “you have to believe you can win”, “you have to keep smiling”, “you have to be strong”.

In this world, dignity is a demand, rather than the real-world's desperate fight to look normal when you're bedevilled and in turmoil.

I can't be perfect or strong or brave, and I'm not even the one who's sick here.

The burden of perfection, living within the narrative, is imposed by people who lift not a finger to help – the TV producer who sees the perfect tear-jerker story in a still-youngish, still-photogenic Dick and Jane; the inspirational celebrity whose story is written in easy cliché by a lazy journalist (with a link for donations to a foundation at the end); today's success story who is mourned a decade hence with not even a nod to the misery that accompanied the end.

I'm not that brave, really I'm not. I can't live a narrative, only a reality. My imperfections abound and rebuke me at two in the morning.

But I have friends, and I hold them closer than the media narrative. Friends don't merely talk of strength and bravery: they are the means and the arms and the muscles and the love. And while the cold screen in the corner of the living-room chatters about a bravery that doesn't exist in real life, I'll be a loving coward and hope it's good enough.

If I can merely be good enough for Ms T and the loving friends that hold me and care, it's enough.  

Chemo and Ms T: the background

You know, it occurs to me, courtesy of a Twitter convo, that many of my posts about Ms T's condition have been a little tangential. I've talked about the life we live, and occasionally named the condition or the treatments, but I haven't set down the basics.

So with her permission, I'll put this down so that I have a background to link to when someone asks.

It's an extravagantly-named condition: “Atypical necrotising vasculitis polyarteritis nodosa of the medium and large arteries”. If you're of a medical bent, you'll notice something about that. Every noun and adjective names symptoms and what those symptoms affect, rather than naming a disease.

So let's call the disease “immune system disorder”. In short, whenever Ms T's immune system is sufficiently active, it attacks “medium and large arteries”. It's like you had a kidney transplant and your immune system was attacking the invading kidney – except, of course, that Ms T's arteries are her own.

There aren't so many large arteries left to choose from. Her coronary arteries are just fine, heaven knows how. For the rest? Here's a list.

Right carotid artery – gone. She lives because a bunch of capillaries her body built around the blockage supply the right side of her brain, at about 10-20 percent of normal capacity.

Anterior cerebral artery – gone. If anything blocks one side of her brain, there's no backup supply. She will die fast.

Right renal artery – gone. There's a small collateral blood supply that leaves her with about 25 percent of the right kidney.

Various medium arteries in her right arm and leg – gone. You can't take Ms T's blood pressure on the right, it doesn't register.

Celiac artery – gone and replaced. This was the artery that told us something was wrong, because her stomach and liver failed. That got her to hospital, weighing a little over 30 kg, with broken ribs from falls (I was suspected as a wife-beater until she was conscious enough to defend me!), and toxemia.

Which is why she'd lost nearly every spare kilogram. In our years together, she has been known to complain about her breasts, which are normally a 12DD burden that gives her back pain, but when her body was consuming itself, that extra fat probably kept her alive, since they shrunk to skin-over-ribs.

The only way to deal with Ms T's condition is to shut down her immune system. That means chemotherapy, and the chemical that works best is called cyclophosphamide, and I've documented its effects on this blog here and here, at least, so I won't reiterate it. And it's carcinogenic, which is a nice thing to live with.

Right now? Things are stable. Once, we believed in remission; no more. But we're doing okay, and as I said, the purpose of this post is as a 1.01 for people who need to know the background.

And to everyone who's also on chemo, our thoughts are with you.

A post for a friend I haven't met

You might say I’m writing this for a friend.

Call it an awareness thing. I’m not competent to diagnose my friend’s condition, but I know how difficult it can be if your body decides to lay out a puzzler for the experts. So here’s the early history of Ms T’s condition, as always related with her permission.

Disclaimer: yes, I have told some of this in a disjointed way, before. This is more linear timeline, with a specific purpose. I won’t be offended if you skip over it.

The reason we want to set this on the record is to illustrate how, with a rare condition, the symptoms can deceive.

Ms T’s condition is the immune system disorder known as vasculitis. The immune system – I guess it’s the T-cells because they’re on the list of “things we look for in blood tests” – has decided to nuke her blood vessels.

That’s not particularly common, but there’s more. In my limited understanding, vasculitis typically starts with things like capillaries – there are some typical symptoms, purpling near the skin and so on. Ms T’s started with major arteries: one carotid, the celiac artery, one renal artery.

The celiac artery was the one that delivered the symptoms that got us a diagnosis. The rest ran under the radar at the time. And the symptoms didn’t actually point to the cause.

What happened – nearly three years ago now – was that her stomach shut down. Between January and March, she went from steak-after-bushwalks (15 km was a good day) to not eating (because every attempt ended in pain), and only able to walk with assistance. We tried a walk in February to see if her appetite would recover; I carried her he 200 meters back.

Yes, we were seeing the doctor. After several visits and nothing working, he referred us for imaging. The clinic had a six-week waiting list.

So we waited.

Things got moving once the specialist took a look. Ms T couldn’t eat because there wasn’t stomach there, just ulcer. So with the specialist speaking kind of urgently down the phone, the imagers waived the waiting list and opened early the next day for an CRT (or was it an MRI? Anyhow, a big machine that takes pictures).

The next day we were in hospital – and still running with the wrong diagnosis (a rare liver cancer).

So: most of Ms T’s condition was (externally) asymptomatic – the extent of damage was only revealed by imaging. Here only symptoms where symptoms not of vasculitis, but of the collateral damage.

Now, I could make a political point of this, something about the state of the health system, public versus private, blah blah blah. Once in the hands of the public specialists of RPA, I’ve got nothing but good things to say. Others have a different experience; I’m not responsible for that, nor am I going to change my report.

What I’m relating is how difficult a diagnosis can be if you have a rare disease. The GP got it wrong; the first specialist got it wrong. RPA – with six specialists taking their shot over nine weeks – ended up with a coin toss, vasculitis or endocarditis.

There simply isn’t an easy test. We tossed the coin the right way. She lived. Rough, but alive. We have the chemo, but right now it’s going in through a vein, which is roughly that we’re killing the T-cells from a safe distance and the side-effects are manageable.

The point of this story?

Right now, someone I know only on Twitter is threading through the labyrinth of mysteries. It won’t be the same thing as Ms T, unless the universe is throwing up the kind of thundering coincidence that makes you throw aside a whodunit in disgust.

But if something is taking months to work out, I’ll place a small side bet on “rare”. And if it’s not racing ahead, I’ll place a much smaller bet on “not cancer” and hope I’m right. But this difficult, I’ll guess that my Twitter followee is on the long road down rare chronic illness.

I hope not. I hope it turns out to be easy and innocuous and temporary.

If not, there’s good news and bad.

The bad is that it’s a very, very rough road.

The good is that many, many of us will stand alongside you. One last story in this overly long post.

In the darkest days – when Ms T was about 35 kg, we were still waiting for the first round of imaging, and I was watching her die – the previous owner of Bunjaree Cottages (which we now operate as our labour of love) gave us a free weekend in a cottage. We’d missed a regular booking, she phone, I told the story, and bingo.

That wasn’t all.

She also gave some life-saving advice – she’s a trained nurse – that kept Ms T going long enough. Just. She suggested something that was revolting, but extremely nutritious in small amounts. Ms T’s weight bottomed out at 31 kg, but she lived. Mrs A – the nurse – had experienced catastrophic weight loss before.

Right now, I can only pass on support and advice. But any of us in the same world are here to help, whether it’s moral, practical, whatever. Because governments aren’t helping: we only have each other.

Go well, Ms C. Our thoughts go with you.