On being positive, hopeful and realistic.

Posted on February 29th, 2008 by Cam.
Categories: Let's talk.

I think out of all the clichés that I have heard about having this illness, most of them have been in reference to a positive attitude. “You have got to stay positive!” – although not technically a cliché, a common response.

I largely agree, but it can’t stop there. It doesn’t guarantee health, it shouldn’t be used to cloud reality, and being realistic should not be confused with being negative.

If cancer didn’t result in death or serious impairment so often, we wouldn’t be taking it so seriously. It is nasty. There are many other sicknesses that are nasty too, so once again, this is not about isolating cancer. I think cancer is often regarded as a high-profile illness when there are many other sicknesses that cause people suffering without the attention and the research funding that is needed. So this issue applies to more than being sick with cancer, or being sick in general.

People that I talk to are quick to pick up on Lib’s and my conveyed positive attitude considering the circumstances. We are positive, but there is a reality that we deal with from day to day that parallels that positivity. In my opinion, it is naive to confuse this dealing with reality with becoming ‘negative’ or losing hope.

We are signing off on our wills this week. Elizabeth filled out the warranty for the dishwasher under her name when usually it would be under mine. Having kids is now an issue as the expectation is that I will be sterile after high-dose chemo (yes, we have stored ‘little Cams’ away for such an outcome, millions in fact). We grieve the loss of mobility, the loss of opportunity, the loss the probability of a long and healthy life. My hair may never have the chance to go grey. It is highly likely I will never hear someone call me Grandpa. I may never get to take advantage of Senior discounts at the movies. This is the reality. My admission of such issues and our dealing with them has bugger-all to do with our positivity.

There are a heck of a lot people who have died who were positive to the very end. They stuck to their guns. Who could tell the ones they left behind that maybe they weren’t positive enough? Remaining positive is important, but I believe it can’t stand on its own.

A positive attitude does an amazing amount in the health and well-being of the sick and the well. I have no doubt about this. But I also believe there is an extreme version of positivity that is nothing more than blatant denial of the seriousness of someone’s predicament. Sickness sucks, as does death, but this is the predicament we have as humans.

After thousands of years of the same thing happening over and over, it would seem that we are still not getting use to this idea. “You’ll be ok!”, “You will get through this, I know you will!”, “I have complete faith that you will be healed”. Have we not learned that these often self-appeasing comments are still echoing in mortuaries, coffins, graves, tombs and pyramids all over the place (though I think most of the echoes in pyramids are in Egyptian), not to mention how they ring in the ears of family and friends left behind.

Sometimes, things aren’t ok. There is nothing wrong with coming to terms with this fact and being wise in our preparation to accept reality. It would be immature, I believe, to think that by dealing with and accepting possible outcomes would jeopardise a positive outlook on our situation. I am not going to die sooner because I accept the fact I need to update my Will or deal with the prospect of unfavorable outcomes. That is where I am at, now.

The important factor for me, therefore, is hope. I know enough about the risks, I know enough about the success stories, and I know enough about the grim aspects of my condition. I know enough to understand the reality of the situation. So I live positively knowing that I have a real hope that things can be better than expected, that miracles are possible, and that I have a superb medical team and support network doing their best to make me old. That makes me ecstatic. Why wouldn’t I be positive? By accepting the reality of the situation every day, I know it is helping us in our grieving in the present, and will help us in the grieving we may face in the future.

A word of caution also that has been on my mind for quite some time. Attaching God and spirituality to such clichés and responses (or verses taken out of context) in such circumstances is seldom helpful. You may know the ones I am on about. “God will work it out” or “You are a Christian, everything will be fine”. I wonder if when God hears this he sighs in disbelief and says “Bollocks! Are they thinking about what they are saying at all? Have they not taken note of what has been going on for the last few thousand years or so? Do you not realise how this kind of language and babbling isolates people? How about you stick with my promises for a while before you go adding my name to feel-good-happy-clappy clichés?” I feel that when people over-spiritualise situations to put a positive spin on them, or justify situations using Gods name, there is a real danger that we can completely miss the point and pull the rug out from under some significant revelations. Worth thinking about.

God, if you are still reading this blog, I would be keen you get your take on this. Hope I didn’t steal your thunder.

We are going to fight this sickness to the death, no doubt. We have great hope that I will get a Senior Citizens Card. This hope exists in the light of the reality of our predicament. I have a faith in a Creator who is merciful and powerful- this doesn’t guarantee I am going to get better. Dealing with the realities of the present and future possibilities doesn’t mean I am going to die sooner. Denying reality is going to remove the opportunity to learn about life and depth of character (both human and divine).

It is time for this thinking to grow up. For God’s sake and for ours, let the reality of situations, the reality of human nature, the reality of the world’s predicament allow us to get a grasp on what is actually going on. Then we may grieve honestly when it’s right to grieve, celebrate when it is right to celebrate, question when we don’t understand and spend some time processing what it means to be positive and hopeful in the light of acknowledging reality.

On other things
ps. Ironic that my debut into the papers is in the football sporting pages. Today’s West Australian, no less, pg 73, no less. It can only get better.
What irks me is that the front page is given over to a bunch of students who got the day off due to teacher strikes. I have been taking a whack-load more days off than them, and I get page 73. Oh, the injustice!

20 comments.

The new face of football

Posted on February 26th, 2008 by Cam.
Categories: Let's talk.

As it turns out, I just maybe the next face of football in WA, and really, why shouldn’t I be. At chemogym today and I am doing my 5-minute marathon on the exercise bike when the gym owner/chemogym coordinator introduces me to a photographer. He asks me and another chemogym member if we would mind having our photo taken for with some football player to promote a fundraising football match this weekend.

So they were just waiting for another football player to rock up and before I know it I have my arms around a guy in a football jumper (no, of course I don’t know his name), looking at him in adoration as he rides one of the exercise bikes (a very natural pose of course- to be riding an exercise bike while two cancer patients have their arms around your neck). Should be in The West Australian newspaper this week sometime.

So I am just letting people know that it is actually me in the photo. The fact that I am in a gym hugging a football player shouldn’t throw you. This is the new me. Well, this is the ‘me’ that readers of the West Australian newspaper will see anyway. I can imagine that I will be stopped in the street for years to come as people say “Hey, aren’t you that football fanatic who works out really hard in gyms?” Yep, that’s me.

The downside is that I will have to purchase copies of The West Australian this week. I have been boycotting this ‘publication’ as much as I can recently as it continues to insult my intelligence and the intelligence of many others older than 9.

I had a meeting with the specialist today and all is well. Treatment seems to be going well and I start my 3rd cycle of chemo on Thursday. My energy levels are up and I feel kind of mobile most of the time. I’ve got a headache on my mind at the moment which can take its toll, but other than that, I feel good.

13 comments.

Covered

Posted on February 24th, 2008 by Cam.
Categories: Let's talk.

Something that has been on my mind a bit lately is the money situation and how it plays out in different choices of treatment. It may be uncomfortable to talk about at times, but it maybe helpful for some who are considering these issues.

When I was still at Uni, my Dad wisely organised a friend of his to set up life insurance for me. At the time I thought it was a bit of a hassle having payments coming out of my student wage, but alas, it was sorted. Libs and I reviewed the policy and set hers up when we were married. Thankfully, we chose a policy option that has proved helpful for us with trauma cover.

On filling out the necessary paperwork when I was diagnosed, the trauma cover was payed out with no complications. This subject may not be high on your agenda, but I make mention of it because it has been incredibly helpful to us during this time, and I am really thankful that Dad got me onto it when he did. It has just relieved us of any potential financial stress that we could do without at this time. So this is just our experience. Do with it what you will.

The other issue is more specific to Australia with our Public versus Private Health care system. For those not familiar to Australia’s health system, your health care is free and medications are subsidised generally through the public system. You can opt to be treated privately and pay for it or be covered by a private health insurer. There are lots of perks that come with private cover, such as shorter waiting lists and sometimes ‘nicer’ facilities.

Before I knew how sick I was, Elizabeth was organising her health insurance so we both opted to get full private hospital cover. This, by the way, happened 2 days before I was diagnosed when all I knew was that my chest was sore. Timing. So we started off private, and all the medical staff were excellent, as was the treatment. Due to a set of circumstances, I was admitted publically via Emergency when I had my hip/pelvis fractures. So many tests were run that we decided to stay with public.

I make mention of this because I was talking with a person recently who underwent chemo and radio therapies privately and paid the gap (kind of like an excess). I don’t know the full details of the treatment, so I can’t comment on the exact reasons why the cost was so high, but she mentioned she was paying $1000 a week in gap fees, totalling (so far) $40000. In my experience and opinion, I have been exceptionally happy with the treatment and professionalism I have experienced while being treated publically, as I was privately, but that sort of bill we can do without.

Now of course, everyone’s experiences and circumstances are different, and I do not present this information to make the private option seem unjustified. As it stands, we pay a nominal fee for our consults and this money goes straight into cancer research. Even now, after almost a year of treatment, we haven’t claimed anything from private health cover. The only major expense has been any imaging that we have had done to avoid the long waiting lists that accompany the public health option at the moment.

As I say, this is just our experience, please take it as such or feel free to comment with your own experiences. The understanding is that it may differ between what the sicknesses or injury is, hospitals, departments, doctors, nurses, states and countries. Whatever the case, this topic is all way above the bottom line. The bottom line is that we are so thankful that we have any access at all to health care of any description.

5 comments.

Meeting Folk

Posted on February 21st, 2008 by Cam.
Categories: Let's talk.

I have talked about ChemoGym a bit I know, but I have to say I am really enjoying it and getting a lot out of it. The fitness thing is good, but I am really enjoying meeting people. I thought I would be meeting a lot of people in similar circumstances during this treatment, but waiting rooms just aren’t conducive to conversation.

So I am meeting a lot of people now and being able to hear their stories as we pump some serious iron. You get to hear of different treatments, different outcomes, different approaches and different attitudes. I guess everyone there is taking a pro-active approach to their situation as they are going to a gym to do all they can to get better and stay healthy.

Getting back to my affiliation with fitness and football, on Tuesday this week I went over to one of the volunteers to introduce myself. I am never sure who is sick and who is well unless they are looking really sick. This guy looked like he was in shape and he seemed to cope ok with the warm-up walk, so I correctly assumed that he was one of the volunteers. “Hi Andrew, I’m Cam”. He asked me a few questions about how long I had been coming. I asked him what his background was. ‘I play for the West Coast Eagles’.

For those of you who don’t live in Australia or have the same intimate knowledge of sporting legends as I do, Andrew Embley is, so I am told, one of the better known football players in the AFL. My questioning him on his background may have been quite a shock to him, so I am glad I held myself back from saying “Who are they?” after he told me which team he played for. He volunteers there each Tuesday on his day off. Football player or not, he is outstanding in my books. I’m yet to find out if he thinks the same of me after our conversation.

So today’s session at the gym was a real workout. I walked about 900 meters, lifted a broomstick, spent some time on a rowing machine, and did 2 minutes on a cross-trainer before slumping in a heap on an exercise bike for a 5-minute burn around, or part the way around, a virtual Tour de France. The 2-minute stretch on a cross-trainer indicated to me that I have got plenty of room for improvement. My chicken legs were screaming for mercy after 20 seconds.

You can see here the obvious areas needing improvement.
You can see here the obvious areas needing improvement. It is amazing though how much tone has returned since doing the reps with the broomstick. And yes, I did find a convenient place to keep my sweat towel. And my drink bottle. And maybe a medicine ball.

13 comments.

Not Resting

Posted on February 19th, 2008 by Cam.
Categories: Let's talk.

This week has been different. After spending most of last week taking things easy, I feel like I am putting my body through its paces a bit now. I am helping Dad build a deck out the front of our apartment. It is only a small deck, but everything I am doing just takes such a freaking long time. It is looking good though and we should have it finished by this afternoon.

Did another session at Chemo Gym today. In one hour, I did a warm up walk of about 200 meters, used the exercise bike for 10 minutes, lifted a broomstick (yes, a broomstick) like it was a barbell, watched my muscles ripple in the mirror (this took up most of the time) and did a warm down walk of about 400 meters. My legs are pretty sore now though. I am not sure if it is because the broomstick was made of a heavy hardwood, or if it is because I haven’t walked that far since last April. I am in fine form.

Now I am just about falling asleep. Going to rest before the foreman gets back from his lunch break.

5 comments.

Resting

Posted on February 16th, 2008 by Cam.
Categories: Let's talk.

The last few days I have just been resting. Apart from installing a dishwasher, that is. There are a few things that we are justifying with the preparation for high-dose chemo, and the dishwasher is one of them (sterilising dishes). It is frustrating, I have to say, not being able to do things that I used to do.

We hung a mirror the other day – a simple task of fixing two screws into a wall. It took over an hour and in the end I just couldn’t finish it. Thankfully, Dad rocked up right on time and saved the day, again. I knew the dishwasher was going to take some time. So I decided to take the whole morning to do it. Everything was slow. Sawing a piece of wood, holding a drill, driving in a screw, throwing a hammer across a room – they all took a lot more effort than they ever have.

On Monday we are going to put down a deck out the front. When I say ‘we’, I mean I will be watching Dad put down a deck. I am glad I can be there for him in his retirement. I would hate to think that he had no jobs to do to keep him busy.

The other frustrating thing is my reduced ability to think coherently. I am not quite sure what to put it down to physiologically, but my mind seems to be constantly clouded, reactions are slow and peripheral awareness is limited. I haven’t taken any serious drugs since the middle of last week, so I feel like I should be back into some kind of normality. Maybe it is the absence of the steroids or my body in recovery from the first few days of the cycle. Not sure.

Sister Rach and BIL Michael arrive in Perth tomorrow to live. Michael got offered a position in Perth out of the blue at the end of last year. They decided it was a good time to spend some time in the West, so they are making the big move! They found a house in the area to rent. It is smack-bang in between Carms’n’John (Sis&BIL) and us, so about 250meters away. How good is that?!

So bring on the year I say. I don’t think we could be more ready for it.

5 comments.

Chemogym

Posted on February 12th, 2008 by Cam.
Categories: Let's talk.

Those who know me well understand the affiliation that I have with football clubs and working out in gyms. I just don’t give a flying rip for either. And given that today is a down day, having trouble walking and being tired in general, you can imagine my shock when I found myself standing in Claremont Football Club this morning with my sweat towel and training shoes on.

Chemo Gym. Not for the faint hearted. I am sure people were standing in awe as they watched my repetitions, curling my arms to the tune of 1000g (a kilo in the old money). The sad fact is that this is the activity that I worked up to. I spent a good 5 minutes on the exercise bike initially on level 3 to get my blood racing before attempting any intensive weight routine.

The most humbling of exercises I completed today was on the multi-purpose machine (I think they call it something else). There are very few things that say ‘you are unfit’ more than completing 20 repetitions on a piece of gym equipment while the weights are actually disengaged. I was there. I have set a new baseline in my fitness benchmarks.

The people that run this gym are sensational. They are all volunteers who assess how your body is going and provide a program that will keep you fit and build you up to get you though chemo. There were about 20-30 people there all at different levels of fitness, I apparently stretched the outlier factor as soon as I walked in the room. I think I was the only person that was there that went to the post office after the workout to pick up walking apparatus.

The sticks, by the way, are fine. But they did come with a compass and snow shoe attachments. Bonus.

6 comments.

Walking stick

Posted on February 12th, 2008 by Cam.
Categories: Let's talk.

In the scheme of things, today is one of my down days. This new cycle of chemo is pretty tame as far as the drugs are concerned. I have finished my 4-day bombardment of toxins that start the cycle, and now I have the rest of the cycle off. No steroids, no cyclophosphamide, no idarubicin. Good to be off these it would seem, but my body has started to get tired very quickly now. My legs ache, my muscles ache and my movement is pretty restricted.

I am looking forward to getting some walking sticks today. We went to the Independent Living centre at the hospital the other week to get measured up for a stick but they were all too small. The ones that were big enough were very serious sticks for very serious walking difficulties. My difficulties are not that bad. I just need a bit of extra support when walking on some days and to help me rest if I need to stand.

So I ventured onto Ebay. Picked up – not one, but three (as you do)- walking sticks for $20 in an assortment of colours. Adjustable, telescopically collapsible, lightweight, interchangeable feet, shock-absorbing, foldable handpiece… don’t even get me started on the incorporated LED flashlight. Oh yeah baby. I am going to be one accessorised limper.

It is important to know that I did hold myself back. I could have gone the option where you get 6 walking sticks for $29. Now that would be just silly. As it is, I know that working out how to use 3 in a day will be a challenge. I also did not go the options of the magnetic compass, MP3 player or snow-feet.

So my face is pressed up against the window, waiting for the postman to bring me my package. It is not the age that I was expecting to get so excited by a new set of walking sticks, but I am going to make the most of it before building up to the pimped up electric walking frame in my twilight years. You know there will be no holding back then.

6 comments.

I get so emotional baby

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

I remember talking with my music shop man, the guy whose wife is battling cancer (referred to him in the post ‘The space between’). He has also had his fair share of health problems and through the midst of it all he explained that what he experiences emotionally now compared to his disposition previously. I understand what he is talking about more and more.

Hardly a day is going by when I would not have an emotional response to something I hear or see. It has been difficult to watch programs on real-life medical stories, any movie with a hint of sadness, or hearing about people in any unfavourable situation. It is not just the sad aspects of life that elicit a response. The other night I almost started crying when someone just blew everyone away with their performance audition on ‘So You Think You Can Dance’! I am waiting to see what happens next time I watch ‘Deal Or No Deal’ to see if I need to book a personality assessment.

Could it be the chemical imbalance in my body at the moment? Is it a permanent deepening of emotional understanding that is going to make me cry at the drop of a hat for the rest of my life? The reality is that it is a bit of both. I know my understanding and emotional disposition has changed permanently, and the changing will continue to take place for a while yet. There are still some big steps to get through.

The hardest thing for me to control is the responses that I have to the responses that others have to what I am going through. Having something affect me directly is so much easier to master control over than seeing or hearing others who going through this all with us, processing what we are experiencing. Not that it is meant to be easy, but it works me up when other people are affected by my circumstance.

So now I find myself walking through the hospital looking at people who I know are going through a tougher time at the moment. I just want to talk with them. We walked out of our consultation the other day really happy, but straight past a family who had obviously received some sad news. There are cues all around me that can set me off, not always noticeable to others, but enough to let me know that my heart is wearing a pathway to my throat.

There have been times recently I have gone quiet in conversation and pretended to forget what I was going to say next. The reality is that it is taking all my physical energy to control my eyes watering or to stop a whimper escaping mid-sentence. So you can treat this as a bit of a disclaimer, a warning if you like.

Of course, it could just be the medication messing with me.

13 comments.

Rain

Posted on February 7th, 2008 by Cam.
Categories: Let's talk.

I don’t know how to explain today. It has been quite a surreal 24-hours. It is raining.

Yesterday, I couldn’t escape the discomfort that I felt in my body. The heat in Perth has been horrendous- the hottest summer in 17 years apparently. I felt the full weight of it yesterday. My body thinks that it is hot (temperature) most of the time due to amyloidosis. It was damn hot yesterday, and just suffocating. I haven’t got an air-con in the shop yet so there was nowhere to cool down. The only thing that I craved was to be drenched in water. I couldn’t get the image out of my head just how amazing it would be to be washed down with cool water and be refreshed.

Elizabeth picked me up mid-afternoon and we went home. I jumped straight into the shower and sat down, letting the cold water soak me. We chilled the house right down to the point where Elizabeth needed extra clothing. I sat under the airconditioner with my feet in ice-water. We went out with family for dinner just around the corner but headed home a bit earlier as I was still feeling quite hot and sore.

I was finally beginning to cool down again by about midnight last night, and there was a cool breeze moving in. For the last few days also I have had to appease the god of purging digestive tracts with frequent offerings. Last night was therefore like a spiritual revival that left me feeling tired and dehydrated.

At about four o’clock this morning, the heavens opened with the largest drops of cool rain. There was no hesitation nor question when I found myself standing in our backyard in my underwear as the rain drenched over me and the cool wind blew over me. It couldn’t have been more perfect. I know other people like rain, but the drops that fell on me, were for me.

We were due at the hospital at 8:30 this morning to get my monthly infusion to increase my bone density. The smile didn’t leave my face as we drove through the rain, walked through puddles, got wet trying to share an umbrella and planned routes to take that kept us close to purging sanctuaries in case there was an unexpected call to prayer.

It is also Chinese New Year today, so all morning there have been crackers going off in the street as different businesses around our house are being blessed. There is a group of dancers, dragons, drummers etc that go around performing the ceremony. Great fun to watch, but great to hear from the couch too.

Today it is raining all day. I have the doors wide open and the cool breeze is blowing through the house. I start my first day of my second cycle of chemo so I am expecting to be laying low today and tomorrow. We forgot to pick up my anti-nausea drugs this morning from the hospital so Elizabeth went back to pick them up and I will start my lunch today with some poison.

If being left with an image of a 33-year old standing half-naked in the rain disturbs you, please feel free to replace it with the image that is strongest for me today. It is the scene of Elizabeth and I walking through the hospital car park, sharing a token umbrella and a hot chocolate, walking slowly through pouring rain and puddles and laughing with each other for no particular reason. She is so good to me.

12 comments.

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