Kitabı oku: «Days Like These: A life cut short by cancer, a love that touched the world», sayfa 2

As I emailed a friend:

For some reason my faith is surging when I am normally quite melancholy. I sense a battle ahead but I also sense a victory. I’m frightened of the medical processes ahead. My body is going to go through hell, not to mention my mind … but I have hope. Real hope. I’m going to make it out the other side of this and there will be tales of miracles. It’s time for me to stand up and be counted.

What poor research my enemy has undertaken! His recon team should be hung, drawn and quartered! What terrible destruction I will bring to his doorstep. What violence I will unleash against him.

Don’t you know who I am? Don’t you know what you’ve just awoken? Don’t you know who fights for me?

You will regret the day you picked a fight with me. You can count on it.

‘Because he loves me,’ says the Lord,

‘I will rescue him;

I will protect him, for he acknowledges

my name.

He will call upon me, and I will answer him;

I will be with him in trouble,

I will deliver him and honour him.

With long life I will satisfy him

and show him my salvation.’

PSALM 91: 14–16

ONCOLOGY

That’s a word I never thought would pass my lips.

Oncologist.

Arrive at Manly Hospital again, head up to the oncology ward. Very quiet here. Just a few people sitting around receiving their chemotherapy. This will be me in a few weeks’ time.

We go in and start getting some explanations. One of the hardest things through all of this is the waiting for confirmations and/or information. I feel as though I have been hung over a cliff with nothing but a thread to hold me up, swinging in the breeze.

Waiting.

More waiting.

Yes, no, maybe.

Bloody hell.

The surgeon won’t comment on the oncology side and the oncologist won’t comment on the surgery side. Ok, fair enough. But tell me something.

So we’re getting down to the nuts and bolts now. Chemotherapy. Three months’ worth. Once every two weeks.

A TRIP TO ‘THE BANK’

With chemotherapy confirmed, Rachel and I have to make a decision on some ‘family planning’ issues.

Meaning, Rachel wants more kids and there’s a 50:50 chance the chemo will knock my little swimmers out of action. It’s too great a risk to take for us so we’re referred to IVF Australia and organise a ‘deposit’.

Now, I have seen this sort of thing in movies and heard stories about it but nothing prepared me for what I was about to experience. We rock up to this unassuming little building on the Pacific Highway in Greenwich on a Saturday morning, en route to my Nan’s 90th birthday party no less, and I head inside. Rach and the boys wait in the car. Up to the first floor and there’s only women at reception.

Great. As if this wasn’t already awkward enough for me.

Fill in all the forms, permissions, power of attorney etc. in case something happens to me, and then I am introduced to the scientist. Who happens to be a not un-attractive Asian woman about my age. It just gets better.

So we fill in some more forms and the terminology on these forms is making me blush a bit but hey, it’s for a scientist, right? It’s all for science. The camera up the ass and now this, all for science. Can someone nominate me for a Nobel Prize in physiology or medicine? Geez, if Obama can get the peace prize then surely I can get some kind of concession here?

Anyway, the lovely scientist leads me to my cubicle and in I go. Based on what I have been told, I am expecting a pile of porno mags, but no. The digital age has come to sperm banking and there’s not a magazine in sight. Instead there stands a pearly white Samsung LCD monitor, all neatly cabled and connected to an A/V socket in the wall. Quality installation. Out of curiosity I press the power button. Maybe the Weather Channel or MTV?

No.

Just what you’d expect. Off with the TV.

Anyway, you know the rest. I did what I had to do and got out of there quick smart. I was a little anxious about returning. The doc said I’d need to go three times to get enough stems to be viable. The thought of doing it twice more was a little unsettling. But not to worry, the scientist called me back a few hours later and said that she normally likes to receive 20 stems for a viable freeze and I gave her 19. So I don’t need to go back. Woohoo!

I’ve told Rachel she better not even look at my groin or she could get pregnant. Maybe those Superman undies weren’t so ostentatious after all?

Anyway, as you were.

FALSE START

I was supposed to start chemotherapy today. It was to be a long day of education, inserting the PICC line (like a permanent drip line for the drugs) in my arm and then the first round of drugs. It turns out the PICC line would be a real hassle. Constant need to change the dressing, can’t go swimming at all (it’s warm here now and the beach is so beautiful in the mornings), but the biggest issue for me was that there was so much external guff that it would be quite difficult to be around the boys and not have an accident. All these bits and pieces hanging off my arm would have been a huge dangling carrot for Jakob, who loves to play with anything and everything. He doesn’t understand ‘no’ yet so the only way to keep the PICC line safe would be by seriously limiting my contact with him. And that’s not gonna happen.

So we opted for the port catheter (or portacath) instead, which is basically a silicon injection pad inserted under my skin and a catheter that goes directly to the vein required for the chemotherapy. It requires a brief surgery to have it ‘installed’ but after that it can stay there for years. I can function totally as per normal (if indeed I ever was ‘normal’) and the port is really low maintenance in comparison to the PICC. It’s also totally invisible to the untrained eye, which will mean Cody won’t notice any weird cables coming out of Daddy’s arm. Another plus.

I’m a little bummed as I really wanted to get this thing underway, but ultimately this will make the chemo easier to deal with and so I will wait. The other bummer is that it will change my on/off cycle by a week. My sister-in-law is coming over for a week in November on what would have been my ‘on’ week. She’s a doctor and I was kinda looking forward to her coming to the oncology ward with me to check it all out. Anyway … it’s OK I guess. Met another doctor today, too: the vascular surgeon who will implant the port. He makes about the seventh doctor in two weeks.

My mother is here for a week so we have someone to look after the kids tonight. It’s pretty rare that we get to go out at night these days without the kids, so we’re going to see a movie. I know it’s not the most romantic of evenings and it’s cheap-ass-Tuesday, so it will likely be packed. But, for me, anywhere alone with Rach is pretty special. It will also be nice to go out and forget about things for a couple of hours.

NOT JUST ANY PORT IN A STORM

I spent yesterday back in the company of the wonderful staff at Manly Hospital. I’m not being sarcastic, either: they’re truly amazing people. From the admissions staff to the nurses to the surgeons, everyone cares. The Australian media has really got it wrong with all their hospital bashing. And the best part? It’s all free. Medicare is taking care of everything. What kind of incredible country do I live in where all my medical costs are covered by the government? One of the drugs required for chemotherapy is $5,000 a month by itself! So if you have an inkling that Australia is not the lucky country any more, let me tell you now, you couldn’t be more off the mark. Anyone who lives here is truly blessed.

It was a good day to be inside as it was grey and overcast outside, so off we went to get the portacath installed. I headed up with Rach at 11 a.m., got prepped and then just waited. Rach headed off to do some stuff and the nurses told her they would call when I was ready for pick-up. Again, in with the cannula, on with the oxygen mask and a guy came and drew an arrow on my chest. Kind of like a ‘this is where you cut him open’ marker, no kidding. Thankfully everyone in the operating room can read map directions: when I woke up I was sore in the right place.

They really hammered me with the anaesthetic. I’ve never been so groggy coming out of an operation before. I was aware that my speech was quite impaired, less than half the speed I usually talk, and my mouth was very dry. It’s quite a trip when you’re trying your hardest to open your eyes and they just won’t respond. By the time I finally opened up it was close to 7 p.m. My mum was home watching the boys, so Rachel arrived not long after and I was discharged.

When we got home Cody was very happy to see me but he had been told Daddy was very sore on his shoulder and to be gentle with him, not to hurt him. Bless his little heart, when I asked him for a cuddle he started forward but then obviously remembered what he’d been told and pulled back. ‘Nooooo,’ he said. ‘I don’t hurt me on my shoulder. You got sore shoulder, Dad.’ Cody gets his you/me muddled up sometimes but I knew what he meant. I showed him the ‘hospital stickers’, which is what he calls the bandages. He looked at them and said, ‘I like your cool stickers, Dad!’

It’s nice to know that in the middle of all of this there are people that love me just because. I can’t imagine what it must be like to get this kind of news and have no one to lean on.

I walk around my house and see all of the boys’ toys, scattered all over the floor, and think to myself, how beautiful.

I see one of Rachel’s Understanding Chemotherapy books left on the bed and know the woman I married is educating herself so she can fight beside me.

When Rachel and I were married, I promised her in my vows that I would fight for her. I never imagined it would be this kind of fight, but I will not let her down. I will fight this cancer with every ounce of strength I have, and when I have none left and can walk no further I will rest and let my God carry me.

… those who hope in the Lord

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

ISAIAH 40: 31

THIS ISN’T KANSAS ANY MORE, TOTO

The past week has been … intense.

It started last Monday with a five-hour infusion at the hospital.

To give you an idea of the toxicity of the drugs I am receiving, the nurse wears elbow-length rubber gloves, a face mask and a full body gown just to handle the drugs in their bags. The drugs don’t at any time leave their bags except to enter my body through a tube. So, while the nurses go to great care to protect themselves from any kind of exposure to the drugs, they freely pump me full of them. If that wasn’t enough to add a few more grey hairs to the scalp, further research revealed that chemotherapy has its origins in chemical warfare. It was discovered by accident during World War Two, when doctors were performing autopsies on soldiers killed with mustard gas. Over the years it has been developed and refined into the treatment I am receiving now.

This is serious business. They’re actually killing parts of my body to get to the tumours.

There is one word that I think describes chemotherapy:

Violent.

I actually felt OK the day of my initial infusion and the day after, though a little queasy. I even did a full day’s work the day after.

But the next day, that’s when I got hit. Nausea, vomiting, fever, sweating, dehydration and, your friend and mine, diarrhoea. I also had the hiccups for 15 hours straight.

So I drive myself from the edit suite to the hospital to see the oncology nurse.

(Mental note: Don’t drive when about to pass out. I’m sure it voids something in the fine print on my insurance policy.)

Arrive at the hospital, nurses look horrified and I’m immediately admitted to the ER. Then, following a variety of tests, I am told I’m not going home and am moved to my own room for the night. Small mercies: my own room with a sunset view out over Sydney Harbour. But I still want to go home.

No, you’re staying put.

Hospital is all about waiting, and it’s hard to stay positive when your mind has such a dull environment to go wild in. Suffice to say it was not a pleasant night for me, despite the stunning view out my window. My mind continually wandered to Rachel, Cody and Jakob. In the loneliness and darkness the fear begins to talk to me, mocking me. My mind is besieged by all sorts of fatalistic imagery and the tears come like a flood.

Then something clicks inside me.

No.

It is written:

He was looked down on and passed over,

a man who suffered, who knew pain firsthand.

One look at him and people turned away.

We looked down on him, thought he was scum.

But the fact is, it was our pains he carried –

our disfigurements, all the things wrong with us.

We thought he brought it on himself,

that God was punishing him for his own failures.

But it was our sins that did that to him,

that ripped and tore and crushed him – our sins!

He took the punishment, and that made us whole.

Through his bruises we get healed.

ISAIAH 53: 3 (The Message)

Through his bruises I get healed.

Through his bruises I get healed.

Through his bruises I get healed.

And then the room is flooded with peace and I sleep.

The next day I’m told that the doctors believe I have picked up a bug or infection of some kind. Chemotherapy messes up the immune system and while I am receiving infusions I will be vulnerable. This just happened to be ‘really bad luck’, according to my oncologist. Future infusions should not affect me so badly. I’m kept another day to be safe and then sent home on Friday afternoon.

When I get home, Cody is at kindergarten and Jakob is super happy to see me and we have the most awesome cuddles on the couch. Every second is treasure beyond words.

I can now feel a seismic shift going on inside me. It’s one thing to say ‘I will fight this’ when it’s just a diagnosis on paper. It’s another thing entirely to sustain that focus while you’re in the thick of the battle, bleeding from the fury of the fight. This fight is as much physical as it is emotional and spiritual. You can’t stare into the face of your own mortality and walk away without being profoundly and irreversibly changed.

This is as real as it gets.

My body will survive this assassination attempt, of that I am sure, but the old Kristian, the pre-cancer me, is dead.