Thursday, January 17, 2013

Doctors, gods and proselytisers

I'm starting to see a pattern to this.

Day One of the chemo treatment, and I'm feeling like King Kong at the top of the building. Look at me! This doesn't hurt (much)! I am invincible! (I think I'll write a Really Positive blog post about that!)

Day Two, and I have both feet on the physical and emotional slippery dip, because damn it, it DOES start to hurt and I DO start to feel like crap and NOBODY would wish this shit on their worst enemy, and I know it's only going to get worse for the next six or seven days, and then I have to do this HOW MANY more times FFS?

Somewhere along the way, I'll need to write about how shockingly miserable I feel, how endless the tunnel seems, what hideous side effects I've discovered this time round. Sorry. Look the other way. There's nothing much you can do to help; I just have to endure it somehow, and remember that it'll end.

Well, yeah, you could remind me of that.

I hit Day Nine, and wake up feeling strangely energised. Maybe I'm not dying after all. Maybe I can actually chose a task and complete it today. Maybe the bottomless pit of misery was only temporary after all.

Euphoria! I run around like a crazy thing for about five days, posting Facebook statuses telling my poor long-suffering friends how many mundane daily chores Superwoman has managed to complete while hideously poisoned.

And then I crash and am completely exhausted for a few more days, and then I remember to take it easy for the next week regardless of how capable and full of energy I feel first thing in the morning, and then...

...and then it starts all over again.

If only I could level it out a bit- pad the troughs so I don't fall so hard, level off the highs so I don't wear myself out. If only I was a less emotional person, less prone to taking things to heart, less easily delighted by small gains.

It ain't gonna happen.


The Jehovah's Witnesses who arrived at my door on Day 15 spiked up my newly-discovered ability to be less than polite, which could have been quite dangerous in someone as emotional as me. Honestly, sometimes respect and courtesy are overrated, especially if you've been brought up to let people walk all over you because you're so terrified of appearing rude.

It was a shock that they were there at all. I guess they must really think they have something important to say if they're prepared to drive into the middle of nowhere and come down dirt driveways with no idea of the reception awaiting them at the end; out here, it's quite likely to be the business end of a shotgun.

But here they most certainly were, all teeth and pamphlets. And after a few days of burning more energy than I had in the bank, I was completely exhausted.

"How are you?" was probably not the smartest opener, given my circumstances. (Not that they were to know that.)

"Having chemotherapy," I responded cooly. (Think of hitting the fast-freeze button on a body-sized chest freezer, and you're approaching the welcoming warmth in my manner.) "Please leave."

And they did, at once- turned tail and fled- which was just as well, because I immediately found myself livid again, with a fury that rivalled my doomed encounter with the practice nurse. How dare they bring their simplistic, bigoted view of the world all the way onto my private property? What right did they think they had to do that? What good did they think it would do? I almost wished them back again, so I could give them a piece of my mind.

And I scorned them for their rapid retreat. Clearly they had no simple solutions to cancer, and didn't have the balls to engage about it. The word 'chemotherapy' was enough to send them scurrying wordlessly back to their car, their childishly-illustrated Watchtower undelivered.

Or perhaps it was my Gollum-head that scared them off.


That poor old Gollum-head is particularly unsavoury at the moment, scarlet-spotted and terribly itchy, and a few days ago had sent me scuttling back to Dr Rosie in search of more trough-padding.

"Your follicles are infected," she noted. "Hats are notorious for this," she added with a nod to the turned-up black number I'd been sporting on my inflamed and measle-daubed skull when I came in, and gave me a script for antibiotics along with some sage advice about washing and sun-drying everything that had come in contact with my head.

Damn. It never occurred to me to wash the old hats I'd dragged out of the back of the cupboard before putting them in contact with my poor sensitive scalp. So much to think about that I've never had to consider before... you just can't get your head around everything, no matter how fast you scramble to absorb information.

Bless Dr Rosie; she was ever so patient with my shopping list of problems, which included delivery of my letter of complaint about the practice nurse. That was received with infinite grace and complete understanding of my perspective. It's what I've come to expect from my GP, and for that grace and understanding I am infinitely grateful.

"I will deal with that," she said firmly, and I absolutely believed that she would.

She listened to my wails about poor Ferdinand the Zeppelin, too, and prescribed a soothing drug to reduce the acidity levels in his tank.

"But try Mylanta first," she added. "The less extra drugs you put in there, the better."

My thoughts precisely.

Then there was the hideous outbreak of sores in what I shall simply call a very uncomfortable location around Day Nine each time. Once you have one of those nasty, permanent viruses in your system- the ones that lurk after the first time you catch them, and come back whenever you get stressed or your immune system gets low- it's yours for life, and the little bastard will take full advantage while your white cell count's down. Rosie dashed off another script, and I gave thanks yet again- this time to the Gods of the Safety Net, because there will, eventually, be a time when the Government calls 'enough' and stops making me pay full counter price for all this medicine.

It's such an expensive disease. I mean, I went and ordered my prosthesis the other day- yes, the time has come when Tubby Teddy can be retired and replaced by the Feels-Like-A-Real-Tit, coolant-pad-backed 'real thing'- and it was the closest I've come to fainting during chemo when the sales assistant told me the price.

Four hundred and forty quid for a replacement tit. Four hundred and forty smackeroos for a flesh-coloured lump of shaped silicone to go in my bra. It seems ridiculous, especially when you consider the statistics. Even if only half of the one-in-eight women destined to get breast cancer in their lifetime ends up having a mastectomy, that's a hell of a lot of lumps of silicone they're making. Say, less than that- even one for every thirty two women... that's quite a market.

I must remember not to stoop to logic. There's no logic to cancer, and even less to medical price tags.


Logic might have led me to believe, right at the beginning of this story, that my disease had hard edges to it and that the steps I had to take would be pre-determined. You have cancer? You go to the doctor, and get sent to other doctors, and they have clear and correct answers to every question you ask (and even to the ones you'd never think to ask), because they've had all that training, haven't they? And so they make the right decisions for you, and you get the right treatment from them, and you get better- or at the very least, you have a delayed and relatively comfortable death.

What a load of bollocks that is. That's nothing more than simplistic popular mythology, and it rates right up there with the naiive pictures of Paradise on the front of the Watchtower. Yes, at one level you do have to put a certain level of trust in your doctors, because they are the ones with access to the biggest store of formal training and knowledge and research-backed evidence that's currently available to the human race- but it's still an act of faith.

They're only human. They don't know all the answers. They can't even tell you how your body will respond to their recommended treatment, compared to the body in the next bed. Half your time in appointments is spent listening to a multi-page disclaimer about the side effects of the recommended treatment that might just kill you, or might just not; they don't know. What you get is their best guess based on the statistics, and statistics won't tell you- yes, you, the individual- whether you're part of the 95% or the 5%.

Undertaking any treatment is an act of faith. In the end, it's the patient who makes the decisions- to accept the doctor's best guess, or to go another way because their inner voice is screaming something completely different. Some people forget that they have that choice, I think. Or the responsibility is too big for them, and they put all their hope in the doctors being right.

Not me. I have to keep thinking, considering, weighing. Listening to what my body and brain are telling me about my treatment. I don't take my doctors at face value.

I mean, I'm fortunate in a way that I've had an unfair share of personal and social experience of the medical profession. My best friend is a doctor. My son's father is a doctor. I am in the fortunate position of knowing first-hand that doctors aren't gods, however much some of them might hold themselves up as such. They're just mere mortals, doing the best they can with the tools available.

We all know that the tools for treating cancer are way less than perfect. The chemotherapy, for example, makes the patient feel like bloody hell for months, yet gives only a tiny statistical advantage in terms of survival. But it's the best tool we have, so I considered it and I accepted it. I push to the back of my mind the terrible thought that it mightn't work, that all this might be for nothing, that I might not be part of that tiny percentage. If it doesn't work, I won't be blaming Dr Mellow. Or anyone's God, for that matter. It's luck and fate.

So when Rosie suggested to me that my next port of call- radiotherapy- was a choice, not a prerequisite, and said that it was up to the Lone Power Ranger to convince me of the value of that treatment, not for me to convince him otherwise- her words fell on fertile ground. As I approach the halfway point of my chemo I've started fretting again about the thought of increasing my chances of lymph problems in my left arm by having the radiation to the armpit.

Always ahead of myself.

"Do you pray? Do you believe in a higher power?" Rosie had asked me, again, when the subject came up. She always has time to look at the whole picture when I go in, not just at the current shopping list of woes. (That's probably why she's usually running an hour late.) She was trying to help me move towards a decision.

"No," I'd said. "I don't pray, but I believe we have an inner voice, a bit like one's conscience, that we need to actively practise listening to. You can't hear it unless you are used to listening. I try to listen to that voice."

Out on the bike, I do a lot of that listening practice. I contemplate the messy complexity that is the inner voice of the cancer patient- full of fear and courage, strength and weakness, despair and hope. And my inner voice did speak to me, eventually, on the subject of radiation. It threw the subject back and forth all the way to Eagle Bend, and eventually, when it had looked at it from every angle, it spoke clearly a hundred metres from home.

It said, "Your body is strong. It's taken everything you've thrown at it, and here you are still on the bike. You can take this too."

So I have to throw away the fear of lymphoedema, of burns, of a more complex reconstruction surgery, and just trust in my body to take on the next treatment with as much guts and strength and resilience as it's shown so far. It isn't the doctor's decision, any more than the surgery or the chemotherapy was; it's mine. I know my body better than any of my doctors. I am in the best position to judge.

I can't just rely on doctors, gods and proselytisers to solve my health problems for me. I also have to listen to that inner voice, and give it time and space and information so it can speak to me wisely, knowing everything it knows about me- from my disastrous family medical history to my emotional strength and determination. No doctor, no priest, no proselytiser for alternate therapies understands that big picture as well as I do myself.

Perhaps some people call this process prayer, and call that inner voice God. If so, nobody has ever managed to express that to me in a way that gelled with my own understanding. Whatever; it doesn't matter. We all have our own ways of making sense of the world.

But we have to find that way for ourselves. You can't teach someone to listen to their inner voice by going from door to door spewing words. It's something you learn, or not, from hard experience- from the disasters that come of refusing to listen to yourself. Whatever the outcome of my treatment, it will be my outcome. I will own it, take responsibility for it, and believe it was the best I could do.

And I guess that's what I have to say to myself, when I hit the troughs again next time round. This is the best I can do. I made this decision knowingly. My body has not let me down. I can survive this.

Remind me, okay? Because that, really, is the best that you can do.

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