The Walk Beside

Report Card

Posted on June 11th, 2008 by Cam.
Categories: Let's talk.

This morning I am heading off to get my report card. This is my first post-treatment and post-scan meeting with Dr Brad to find out how effective the treatment has been.

We are hoping that there is enough evidence to be able to say that I am in remission. Although remission length can be the same length as a piece of string, it would be great to start off on with a clear-ish bill of health.

All things considered, I am feeling well and looking well. So I am seeing this as a good sign. I am still finding it hard to comprehend the last two months. I walked to work today, did pretty much a full day’s work (mostly standing up) and then walked home. I was expecting it to be more difficult than this. I’m not complaining at all. There will be time for that later.

3 comments.

Another snippet of life

Posted on June 10th, 2008 by Cam.
Categories: Let's talk.

Allow me to expand on the previous post.

Most of the people I know who have experienced a terminal illness seem to change, change for the better. Not everyone does I am sure, but most of the people I know have, or they at least come across that way. They seem to ‘tenderize’. They become more observably loving, caring, gracious and focused on important things. Worldviews, beliefs, faiths seem to become more defined and many seem to rest in the certainty of what they have chosen to cling to at the business end of an earthly existence. For those who fear judgement by a clichéd white-bearded god sporting an eternal frown, they may spend a great deal of time on their knees trying to think of everything they have ever done wrong so appropriate forgiveness may be begged for.

I guess this may just be how I perceived these people in the past. Maybe these people continued to struggle with similar things that I struggle with. Facing the possibility of been taken ‘before my time’, I would have thought that I would have succumbed to making the ‘necessary changes’ one would assume to make in these uncertain times. Things like living a clean-living, thoughtful and considerate life, to finish up well.

The truth is, I still struggle with the same shortcomings and temptations I did a year ago, when I felt immortal. I still struggle with the same apathy and selfishness I did a year ago, when I felt invincible. I still struggle with the insecurities and hurt issues as I did a year ago, when I seemed untouchable.

I am not the character I thought I would be in this situation. I remain me, but with the addition of an incurable disease thrown into the equation. I guess it is the lack of change I have noted that surprises me. In this respect, I am glad that I feel comfortable enough to not have to put on a front, sometimes.

So if you come across me in the street and I have a peaceful, loving, tender and sensitive ambiance about me, you can now nod and wink at me as if to acknowledge the secret – I still get angry at things, I still get tempted to make disastrous decisions, I still question God’s methods, I still watch mind-numbing breakfast television as I am too lazy to turn it off. I feel like I am a completely normal faltering human soul trapped in a completely normal faltering human body.

Still, as with us all, it is a work in progress.

5 comments.

Snippet of life

Posted on June 9th, 2008 by Cam.
Categories: Let's talk.

An extract from a letter I wrote a friend this week. I couldn’t be bothered re-writing or fluffing it out to make it sound profound. This is life, and it is allowed to be.

“One would think that me being sick would soften my heart to spiritual things, relational things, make me repent like crazy and pursue a holy life. At this point, I think I am more reactionary, remain pissed off at people who have hurt me and feel like I am more capable of pursuing sin than ever before. Hows that?! This should be a fantastic opportunity to get things in order. Instead I am in tension with being a bitter soul and one who feels like I am learning significant things about God’s nature. A strange place to be.

I am beginning to fear a bit more for the future. I fear more for the way I may handle it, rather than how things pan out with my body.”

6 comments.

PET Scan

Posted on June 8th, 2008 by Cam.
Categories: Let's talk.

On Thursday I had a PET (Positron Emission Tomography) scan. This is being used more and more in the monitoring of Multiple Myeloma, so we are keen to see what it comes up with when I go for a consult this week. The scan is also very helpful as a benchmark for comparing future scans to.

The process is fairly easy to get through. I needed to fast from the midnight before the scan. This is because they inject a radioactive glucose into you that needs to be taken up by cells, and this is made more effective if you have fasted. As with my other nuclear scans, the radioactive glucose will be taken up in greater concentration in areas where there is high metabolic activity, such as a cancerous mass or where there has been physical trauma.

Once I arrived at Nuclear Medicine, they put me in bed in a little cubicle. After getting settled and comfortable, a Nurse wheels in a lead-lined thermos on a stand with a needle sticking out of it. This needle is then injected into a catheter that had been placed in my arm earlier. Once injected, they turn down the lights, close the room up and let you rest for 40 minutes or so. During this time you are not allowed to move. Any muscle movement will result in a greater uptake of the glucose and therefore mess with the results.

After the 40 minutes, you have to pee to get rid of the radioactive urine stored up, and then head into the scanning room. The PET scanner looks like an MRI machine, but it doesn’t make the deafening pulses, it just spins around in a similar fashion to a CT and MRI scanner. They scanned from just below my knees to my head that took about 25 minutes. Once again, as with all scans, you have to remain completely still. The whole process is completely painless apart from the expected hunger discomfort. The radioactivity dissipates after 24 hours.

So that was my PET scan experience. We are hopeful that when we see Dr Brad this week, the results are favourable. Although my body is still aching, it ain’t breaking, and my energy is getting better every day. I am driving a little again now and on Wednesday I walked into the studio, which is about 1.2 km.

Earlier that morning, before I had the scan, I had to have my bone strengthening infusion. I met a girl there who I had seen at Chemo Gym earlier in the week. She has lymphoma and had the stem cell transplant about a year ago. Unfortunately, her cancer is back and so she is scheduled in for another stem-cell transplant from a matched unrelated donor (MUD Allogeneic). She was all smiles though. This step is tough.

We were both at an information session a few weeks back explaining the process. It has come a long way. They showed pictures of the original ‘isolation room’ where they conducted the transplants a few decades ago. It was a bed in a corridor surrounded by plastic sheeting. Nurses and Doctors would tend to the patient with plastic gloves attached to the plastic sheeting. The patients would be in the bubble for weeks, eating food alone and sending out their bedpans from time to time. Lonely.

We were discussing how much better things are now, and you are generally in a single room and people need to just wash their hands. Even the advantage of using the internet while you are in such treatment helps you feel connected to people when their physical presence may be an infection risk. The presentation that showed the history of the treatment was a good reminder that we are born in privileged times. Hopefully, patients in 20 years time will be able to look back on our treatment and be thankful they were born in privileged times, as they pop into the hospital briefly to take their one tablet before getting back into living life.

0 comments.

The Gentle Weep

Posted on June 6th, 2008 by Cam.
Categories: Let's talk.

I have had a couple of gentle weeps in the last 24 hours. For me, the gentle weeps are the ones that run deep, but allow the unbridled wailings to have their place when I hit the peak of grief.

Although I am trying to shake my religiosity, I admit that I am clinging onto a ritual that I am reluctant to repent of, and that is watching ‘House’ on a Wednesday night at 8:30. If you are visiting then, you can talk during the ad breaks. If you call up, you will be leaving a message. If you need resuscitation, you will have to wait until the show is over. Briefly, it is a show about a rude, ruthless Doctor who breaks every rule to diagnose and treat tough medical cases whilst being as impersonal as possible. Fantastic.

Last night was the final episode – a two-hour special. To cut a two-hour story short, the episode ends with House’s best friend, Wilson, lying by his girlfriend on a hospital bed. Tubes and wires run to and from her as she is connected to life support after a combination of events leaves her moments from death. House cannot save her, and it is decided that they will wake her from her coma so that Wilson can say goodbye. The moments they shared together before the switches were flicked were just too much for my eyes to hold in. Elizabeth was also watching, and she’s a mess during Herbie Goes Bananas, so you can imagine the floodgate scenario there. When the show was over, we both just lay together on the couch, not saying a word, but knowing exactly what each other was thinking. We were both gently weeping.

Gentle weep number two overcame me this afternoon. A dear friend from the US emailed me today. We worked together in South Carolina in 1998, and so much has happened in 10 years. She shared that her eldest son Wade was diagnosed with Leukaemia in August last year, just a month after I was diagnosed. He has just had his 5th birthday. It opened up a whole other level for me, imagining what this brave young soul has been through during this last year, during this one-fifth of his life. He and his Mum (or Mom) have been keeping an online journal also, so I was able to catch myself up to speed on his journey, pausing only to stop tears short-circuiting my keyboard.

There is something that particularly squeezes your chest up through your throat when you see a young child smiling in photos taken during what I, as a 34 year-old, have found to be very difficult time. I can put on a smile, even when things are going poorly, but the smile I see on Wade’s face is the real deal. Reflecting back to the Blue Ridge Mountains 10 years ago, his precious Mum and I would have never thought we would be in these circumstances, on opposite sides of the earth, experiencing our fair share of gentle weeps.

You are an incredibly brave boy Wade, and I know you are being well looked after. You have significantly inspired someone who lives way on the opposite side of the world, so your bravery is now known world-wide! Now you may need to ask Mom what the words ‘significantly inspired’ mean. But trust me, it’s a good thing.

5 comments.

*Note

Posted on June 4th, 2008 by Cam.
Categories: Let's talk.

Long-term readers will notice a change on this site in that, as previously mentioned, additional writings will occasionally pop up that don’t relate to my health specifically (or at all). This is in keeping with a mentality change I am trying to make by not dwelling solely on my sickness.

I am a bit confused as to whether this is the right forum though. I am reluctant to use this site as a platform for other topics other than I originally intended. They maybe issues that I dwell on because of my predicament, or they may be topics that I have been pondering for years. I don’t want to write on my health, just for the sake of writing on my health, if that makes sense. I am hoping to write less on my health, to be honest, in light of hoping to have less to write about. Being wary of this, I think I will just see how it goes.

I appreciate others’ insight into issues that are of interest to me, so please continue to feel free to offer your thoughts through commenting.

6 comments.

Boat People

Posted on June 4th, 2008 by Cam.
Categories: Let's talk.

I have a big problem with boat people. They set off on their overcrowded boats, expecting to find refuge and possibly a prosperous new start. They bring their own diseases, beliefs, expectations, weapons and culture and almost force it on the people who rightfully belong to Australia. Often, violence has erupted because they just don’t understand how things operate here, so instead of trying to find out, they will resolve the situation barbarically. The boat people seem to develop their own governance structures in their ‘new land’ and it involves stripping the land’s patriots of their status as human beings, often treating them worse than dogs. Like I say, I have a big problem with boat people.

But that’s enough about British settlers of the 1700’s, who came out on their boats and largely destroyed a significant part of Aboriginal customs, freedom and safety.

The term “Boat People” in Australia today usually refers to people who cram onto unsafe boats as they escape from atrocities in their own countries, seeking any form of safety they can. I have a high regard for these ‘boat people’. To me, they demonstrate many noble aspects of human character that we would rarely be exposed to had they not landed on our shores and become ‘our problem’.

We have it good here in Australia. We have great infrastructure, healthcare, economy and welfare. Often, this is all taken for granted. But I know that some people would have the expectation that other countries should get their act together and develop a similar society. They see ‘boat people’ as second-class citizens who want a free ride at our expense. Now there is a mentality that is worthy of being a problem.

People are often changed when they experience or are educated to the reality that we often term ‘the third world’. I cannot forget sights, smells and the way of life I experienced in my time travelling and it gave me an inkling into the seemingly hopeless situation these people are in. Tyrannical governments, constant exposure to disease, lack of education, lack of healthcare and dangerous living conditions are often the norm for the majority of the world’s inhabitants. It is disastrous that most of us don’t bother actively helping other humans in this situation, but even when these people make it easy for us by arriving on our doorstep, some people can’t wait to see the back of them.

To me, I can’t imagine the risk, trauma and fear involved in deciding to put my family on a boat in order that their lives may be saved. They are human, like us. They love their families and friends, like we do. They feel the pain of having to tear their lives apart to start again. I picture a father, making the painful decision to board a boat with his family, or sometimes seeing them off. They risk being caught by their government, our government and every force of nature in between. For every boat that actually makes it to our shores, we have no idea of how many boats don’t make it. What an incredible act of love. What an incredible demonstration of hope.

These people are doing everything humanly possible to turn their hopeless situation into one where hope exists, and they are willing to risk everything they have in order to pursue it. In our society, I don’t think we understand the full power of hope because we very rarely need to employ it. Even when we do, our hopes are generally based on things we want, rather than things that will give us life.

So when I see the emaciated faces of the fathers, mothers and children arriving on these boats on the news, I see the personification of love, hope and fear. I don’t think I will ever stop being angry when I hear attitudes from some people who consider themselves ‘legitimate Australians’ when they damn other humans to an existence of hopelessness. In support of their ‘legitimacy’ some will proudly claim that they have heritage tracing back to the First Fleet. Congratulations, I say to them; you are the original boat people.

4 comments.

The stillness after the storm

Posted on June 3rd, 2008 by Cam.
Categories: Let's talk.

It is easy to think, “What the heck just happened?” A year of treatment has gone, and I am hoping that is it for quite some time.

There is such a lull at the moment in what essentially has been a year of doing stuff to get better. I am no longer ‘doing stuff’, and the lack of action is quite eerie. No batches of tablets to take, no radiation, no chemo, no antibiotics, no antifungals and still no hair. I take one tablet a day at the moment to stop me getting shingles. Thalidomide starts later this week.

I will be at the hospital for most of the day this Thursday. I begin with the infusion for my bone density, and then at midday I am having a nuclear (PET) scan. This will be used as a benchmark scan to compare future scans to, but it will also help confirm that I am in remission.

1 comment.

Bullying, Harassment, and Shrimps on the Barby

Posted on June 1st, 2008 by Cam.
Categories: Let's talk.

For about four years now I have been working on a series of writings that I hope to turn into documentaries and teaching resources. I hadn’t decided on a title for the series but the working title is “10 things I hate about Australia”. Oooh, harsh.

Now I love Australia, don’t get me wrong. But when you see incredible potential in something, the problems that stop it from reaching that potential need to be identified and discussed. My list includes Reconciliation (or lack thereof – this was prior to our new Government), Parliamentary Talk, Environmental Negligence, The Suicide Rate, Pornography Culture, Education Structure, etc. to name a few. There have been a few incidents recently that illustrate these shortcomings. Harassment and bullying are always on the radar.

During my time as a teacher, I did my fair share of sorting out issues to do with bullying in the playground. I also sifted through numerous programs and information packs tackling the bullying epidemic that seems to grow and change forms with the development of new techniques. There was a significant problem, however, in that all my plans and efforts were sabotaged many times a week and I would feel like we were losing the war on bullying. On of the most consistent saboteurs, I believe, is the Australian Parliament.

I think we are numb to the embarrassment that is our Australian Government during sitting. I cannot think of a better opportunity to demonstrate bullying at its finest than to turn on Parliamentary coverage during Question Time. If you want to see adults insulting each other, shouting over each other, booing each other, heckling and jeering each other, demonstrating classic mob bullying and getting away with it, you need look no further than Parliament House. It is all there. Not only is it tolerated, the members seem to love doing it.

So how do you tackle a nationwide epidemic of bullying? While schools and families struggle to contain the fallout, our nation’s leaders lead the way in how to do it properly. I would suggest that without a change in parliamentary culture and structure, we are going to continue to lose the battle. It angers me greatly to see our leaders setting this high standard of bullying, and there is absolutely no reason for it to remain. This behaviour is like a rancid stench that wafts over every facet of our society.

Another illustration. There is an entertainment show here in Australia that is based on Aussie Rules Football. There are basically a few sporting commentators, guest football players, a comedian or two and a few hosts. The guys involved generally put on their best man-voices and make football sound as essential to life as oxygen. One of the commentators recently pulled a skit where he mocked a female media colleague by stapling a photo of her face onto a mannequin and proceeded to humiliate with various actions including picking the mannequin up by the crotch and groping her.

The host was told to ‘take a break’ from the program, so I watched the beginning of the first show back where this host was first absent. For a good chunk of the show’s beginning, the two remaining hosts admitted that the skit was inappropriate. The remainder of the opening was spent making up excuses for the particular host saying things like the host probably came back a little to early after recent surgery, he hasn’t been himself recently, he really needs a good break, etc. After the barrage of excuses, they guaranteed “It may be two weeks, three weeks, or four weeks, but he will be back! Have no doubts about that folks!” The crowd clapped and cheered. Please.

Can you tell me in what other arena is this behaviour acceptable (aside from Parliament)? Where else could you do this and not be charged for harassment? Is further evidence needed? I am confused, but in the same way it is very clear to me why we have such strengths and talents in harassment and bullying in our culture. Why wouldn’t we?

So I am amazed with how little is done about this. We can count on this being a significant part of our culture until radical changes take place. Some cultures are internationally recognised by their traditional dress, dance or cuisine. We, as a nation, are quickly becoming recognised for our acceptance (and encouragement) of abuse through bullying and harassment. Being abused this way seems to be as Australian as shrimps on a barby.

8 comments.

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