I might be dead in one or two year's time.

It's hard for me to imagine this. My brain, intellect, spirit feels that this cannot happen. Technically there is less cancer in my body than there has been for at least three years. My body feels, for the first time in ages, good.

My wife is on the verge of breakdown, my daughter oblivious. She thinks Daddy is better. She can slap my scarred abdomen and we'll laugh. I can carry her on my shoulders whenever we walk. Though Daddy often falls asleep in the afternoon when he's playing with her. That, she thinks, is a problem.

There are brinks worse than this and people have pulled back from them.

Tags: cancer, the road forward
Current Music: The Sisters Of Mercy "Vision Thing" (1990)

To prove to myself that I am not obsessing over cancer or death or anything really, I decided to weigh myself for the first time in a couple of weeks.

First, I ate two slices of bread with organic berry jam. Then two slices of bread with marmite, avocado, tomato and pepper.

I clocked in at 68.4 kgs, about 1.5 kgs lighter than I thought I was. I had hoped that perhaps I'd put on a kilo as I think that I've been eating a lot more in the last couple of weeks than I have previously.

But no.

I then decided to have a quick shit. In the name of science. Popped out a 5 inch piece of work of average girth with a good squirt of urine.

Back onto the scales.

68.4 kgs.

Well, to me that makes perfect sense. The scales are fucked.

...(where am I hiding, folks? where am I hiding)...

Tags: cancer, the road forward
Current Music: Nash The Slash "And You Thought You Were Normal" (1982)

The results from the PET scan are another mixed bag.

News not so good - the hotspots are still there, same place, with slightly more glucose uptake occurring, plus one of the corresponding lymph nodes is marginally larger. Also one new hotspot in the abdomen that corresponds to another lymph node. At this point we have to assume it is a recurrence of the original cancer from the bowel.

News that is good - the tumours in the liver continue to shrink, now down to 4cm and 3cm respectively.

Most likely I'll start a clinical trial in the next month or two where they will be comparing two drugs (cetuximab vs panitumamab) for effectiveness. To get onto this trial I need to have a biospy taken to see if the cancer is of a certain mutation (60% chance that it is) and if it is then I can go on the trial. Not sure which drug I will go on, and each drug is 50% effective, though one requires a weekly IV injection, the other a fortnightly IV injection. These drugs are normally about $2000 per week to take, and with the trial I'll get it for free. Even better it that the trial is happening at the hospital five minutes drive from our home.

So, I hope I get onto the trial first and foremost, and then that I'm lucky enough to get the fortnightly jab.

Long term? If it works, then I stay on the drug indefinitely (tied to the fucking hospital for the rest of my life, may it be long!) and side effects are generally a rash that might occur on the face and chest. Man, where's that Roaccutane I was on as a teen? I might need it again. I don't care about being bald, oh no, but to lose my good looks? No, vanity, no!

Seriously, I don't give a fuck what I look like as long as I live long enough to watch my daughter grow up. Unless I metamorph into the monster Isla is too embarrassed to introduce to her friends, but there was always a 90% chance that would be the case anyway.

And then I wonder what long-term side-effects these drugs will have on my body. They all do.

Tags: cancer, the road forward
Current Music: Nash The Slash "Children Of The Night" (1980)

I'm getting scared and nervous. I can usually keep it at bay at least until the day of the appointment, but I've felt it creeping up on me these last couple of days.

I've tried not to think about cancer, about a bloom in the body, a two-year mark flowering in the lymph nodes. I'm getting slight pains in my chest and neck, where I 'think' the hotspots may be. Phantom pains, most likely. Lots of cancer patients get these leading up to the results of their latest scans.

I hope like hell they are phantoms, because six weeks ago you couldn't see any structural change in my cells, and if they're hurting now then they're growing faster than a teenage boy's prick in a porn theatre.

Tags: cancer, the road forward
Current Music: The Black Ryder "Buy The Ticket, Take The Ride" (2009)

I'm not posting much about this at the moment. I can feel another long FRAGMENTS post building inside me, an accumulation of emotions and experiences over the last few weeks that form the basis of my life through this time.

I'm trying not to think about cancer too much. Which is hard. My diet reminds me of this everytime I eat. The call and duration of meditation reminds me. My friends asking me where I'm up to reminds me. Every new diagnosis I read in the media or hear from solemn mouths reminds me. The CT scan this morning reminds me.

I have a PET scan next week, and the results of today's scan are a precursor for it. Until then I won't think about it too much, instead pretend to bury myself in the chore of promoting my new collection. Hey, have YOU bought one yet? No? Sheesh...

Tags: cancer, the road forward
Current Music: Pulp "His 'N' Hers" (1994)

The oncologist, who we had waited for over an hour to see to only have him cancel our appointment and ring me that evening,  was pleased with the results of the PET scan (pertaining to the liver) and said he wasn't too concerned at this stage with the uptake of glucose shown by those spots. We said we were.

He said that at this stage it is too early to tell anything, biopsy is probably too hit and miss, and even if they got the entire node it is likely it wouldn't show anything under the microscope.

Why? Because the two lymph nodes are normal size and there is no sign of enlargement or inflammation on the catscan (which I hadn't realised - I had thought they were a little larger, but it is only the uptake that is recorded at this stage). He stressed (like others have) that PET scans can be too sensitive and often you can see things that aren't there on any other type of scans.

What I suspected he would say (and he did) is that we really need to wait until the next scan to see if we can see anything still there. I'll be booked in for another PET scan in 4 weeks, which will conincide with what we need to do for the radiologist and the liver monitoring anyway. He mentioned that if the spots prove to be a problem, based on how well the liver has responded to radiotherapy treatment, it may be an option to treat them with traditional radiotherapy as well (like I had on my bowel pre-surgery).

Hopefully, we'll find nothing. The liver will continue to do its good thing. We can consider Turkey. (Or even better, the liver will be real good and Turkey won't need to be considered!)

Can I be that much of an optimist?

Tags: cancer, the road forward
Current Music: Trio - Da Da Da (1983)

I got the results of my PET Scan today.

I'd spent the morning fighting an insistent feeling of dread and by midday I was busy concentrating on keeping any panic at bay. I took Isla to the library after lunch and we read stories before heading home to get ready for the trip to the radiologist.

I was terrified the SIRT hadn't worked, that another line of treatment had failed me. I had been feeling despondant about this for the last fortnight at least, unsure how I could take another beating and stay up.

We drove to the hospital in silence, each lost in the turmoil of our own minds. Isla would surely have been picking up on something. We found a park and walked through an icy wind under a blue sky to ugly bulk of the Box Hill Hospital, my stomach a mess of nerves and fear.

He giveth with one hand...

The SIRT treatment had had a significant response with the two tumours no longer ringed with cancerous fire (this is how it looks on a scan) , instead the tumours had shrunk by 2-3cm. For me it was a dream response, exactly what I had hoped for but had been to scared to put my heart on the line for.

And he taketh with the other...

Three spots showed up on the PET scan that had not been previously seen, all outside the liver. Two had mild uptakes of the radioactive glucose, located in the chest and the low level catscans revealed them to be lymph nodes. The other was considered a hotspot in the neck, although the low level catscan revealed nothing.

What does this mean? Terror. Fear. Cancer. Spread of disease, courseing thoughout the lymph nodes in the body.

Or perhaps nothing.

The report indicated that the activity could be suspicous for early metastatic involvement, but that reactive lymph nodes also have a similar appearance. By reactive, that the nodes were reacting to infection, as they are programmed to do, possibly a chest infection. I did have a cold when scanned, and I had previously been coughing a lot for the fortnight prior to the scan, so that eternal, half-damned and buried optimist within me can hope for that outcome. But with my current medical history? One would think the odds are stacked against that.

So what do I do? Possible biopsy, but as I know, the biopsy isn't the greatest indicator in the world as it is very easy to actually miss the spot needing to be biopsied, so unless the biopsy returns cancer you never really know what it is. Surgery is an option. Cut my chest open, pull back the rib cage and remove all the lymph nodes, but if they're not cancerous then what risk am I undertaking, and worse, if they are cancerous and I'm chopping myself up like this, the chances of other lymph nodes being infected is high. Therefore surgery is risky and potentially pointless.

It may be another form of systemic drug attack. There are two new ones available. Have I exhausted my chemo options, especially combined with Avastin?

I still need to monitor what is going on in my liver, so I'll still have another catscan in six weeks time, so we'll have a better idea of what the lymph nodes are doing. In an ideal world, they will have settled and nothing will show. This does happen. PET scans do show things that never progress, that disappear, but luck has not been a reliable lady for me to ride with these last couple of years.

Does this rule out Turkey and the cyberknife? Perhaps, perhaps not. If we can somehow deal with these spots, if they happen to go away, if they are something else, then, with my current response to SIRT, I think I'm looking like a good candidate for a trip to Istanbul.

I'm feeling okay about this. Whether it's denial, who can say? My wife cried for a lot of the trip home for the hospital. She fears the worst. I don't blame her. Isla is a smart kid, we worry just how much this is sinking in for her. We don't keep it a secret, she hears what we say on the phone, when people meet us in the street or the cafe or our home, but we haven't said Daddy might die soon. She knows I'm sick, she knows I've got a sore stomach. We measure together how well Daddy is by how long and often she can ride on my shoulders when we're out walking.

I'll call my oncologist tomorrow and make an appointment to discuss what happens next.

Tags: cancer, the road forward
Current Music: David Sylvian "Everything and Nothing" (2000)

This weekend I launch my second short story collection Slice Of Life at Conflux 09 in Canberra. It's on Sunday at 5:30 if you're in town and want to come along. Follow the links for more information on the collection and the convention.

This book has been a labour of love. Geoff Maloney, as editor, and Stuart Mayne, as publisher, have put together a great collection, focusing not so much on the dark side, but the twisted and crazy world we live in that has flavoured a lot of my work over the last five years. You'll probably still shudder at times, as you indeed should, but the collection is served with a thick sauce of black humour and if you're not laughing at some stage then you're probably dead. Or wondering just what the hell is wrong with the guy who wrote it.

Slice Of Life  was originally due to come out with the other fundraising activities the Australian Speculative Fiction community organised to keep me alive about a year ago, but due to a number of reasons (ill health and deaths in the family to be more precise) we have only managed to make it available now. All proceeds from the sale of this book go directly towards my funds for fighting cancer.

More information on how to buy a copy will follow on my return from the convention.

It could be one of those Last Chance To See books, seriously. So you all better buy a copy and get me to sign it, because it will be worth a fortune once I'm gone. Well, maybe worth 2 or 3 times the asking price, but in this day and age that's a lot better than any returns on superannuation.

And just so you know, the guy on the cover is eating his liver. Black enough for you?

Tags: cancer, slice of life, writing
Current Music: Bauhaus "Burning From The Inside" (1983)

And as I surface from this radiation pool I've been drowning in, I'm finally hit with the cold that has been plaguing our house for the last couple of weeks. It's my second proper cold since being diagnosed with cancer over two years ago. Remarkable for a household that regularly visits child day care. And almost perfect timing for me to be heading to Canberra to launch my second short story collection Slice Of Life looking and sounding like a legitimately sick bastard, instead of a really skinny one who still has a full of head hair that chemo couldn't burn off. Perhaps I'll show everyone the patchwork of scars holding my torso together.

Sometimes I think it would be good to get hit really hard with one of these flu viruses, the sort that almost hospitalises you and when you recover from the near-death experience the pleasant side-effect if that your immune system managed to uncover the cancer cells and destroy them. I've read about this in a few cases now, where the patient suspects this was the turning point in their recovery. Ian Gawler was one of them. His was tuberculosis.

It's a chancey roll of the die though. You wouldn't want to put money on it, let alone your life.


Tomorrow...

Tags: cancer, the road forward
Current Music: Jona Lewie "On The Other Hand There's A Fist" (1978)

I can barely remember my life pre-cancer.

I think it was some vague easy dream through which I wandered.

Tags: cancer, the road forward
Current Music: Midnight Oil (1978)