Didn’t get into the trial. Sodium levels where one point too low. They don’t make exceptions. I don’t want anything anymore. I don’t want comments, I don’t want sympathy. I don’t want life if it is to be like this. I am done with this. I just want to be at peace. When did this happen, I can’t quite remember. When did it all go so wrong. My breathing is getting worse, my leg barely functions. I seem to be much more alive than I should be, I am not sure what I have done for this. I certainly won’t keep doing it for much longer. I am tired. Tired of the fighting and losing. Tired of what someone seems to think is an amazing joke. Tired even if this blog.
I will write again.
I wish I could give my life for a worthy cause. Exploring space, or fighting the sex slave trade. It feels so worthless, like I’m standing outside a soy factory screaming to the heavens “there is slightly too much salt in your product, I demand you reduce it by 10%”. I just feel like I am expending a huge amount of energy over something that is doubtless true, but in the end both unimportant and boring. It compares to say, “how did he die? Didn’t tie his shoe laces and tripped and hit his head”. Truly and epically pointless. People have died for great causes. Martin Luther King, joan de arc, anyone who died in war trying to protect a friend and countless, countless others. Out seems I will not be one of them. I almost want a terrorist to throw a grenade into a crowd I am in so I can jump on it and at least save some lives. This is the kind of dangerous thinking that leads to firemen lighting fires so they can fight them. I just feel so unbelievably stupid. Not looking the correct way when crossing the street, storing rat poison in a salt shaker on my dining table, getting cancer in your mid twenties. Stupid.
I have thought about becoming a champion for euthanasia but for me to go down that path all hope would have to be gone, and at that point I will be very weak and probably unable to spare the energy. Then again maybe not. Certainly if I get through this it will be one area that I will put a lot of effort time into. Maybe I will have the energy. I’m not even sure what I would do. Nobody wants to think about young people dying. You just walk around a track, or grow your facial hair but nobody actually wants to think about death. It just reminds us that we all will die.
So I sit here watching infinite documentaries showing me high def pictures of places I would rather be. I would sacrifice the rest of my life for one day in a magic plane that could take me around the world seeing the wonders on my screen. End it all soaring into space and gazing down on the beautiful blue and green ball we live on. Then gently fading away, content. Sadly I don’t have enough left to give to get this, even if it were physically possible. Perhaps in my dreams as I slip towards death. Perhaps in death our soul can undergo such a journey. I giggle to myself; I should be so lucky.
So I will join the ever growing number of nameless young adults dying of a disease that increases in power as we fuel it with pollution, stress, smoking, bad diets and ignorance. It is the monster under the bed. It grows in the dark. It grows, unchecked, in our minds. It grows in ignorance and greed (the metaphor falls appear a bit here but life ifs not perfect.)
I will end here as my phone is playing up and I don’t want to lose the post. But things look good for the trial I am going on. Met all the criteria today so unless they find something wrong with my heart I will start in under two weeks. The drug is no magic bullet, but hopefully it will buy enough time for my body to do its thing.
Had a bit of a panic attack tomorrow. Did some work around the house. Because of the breathing difficulties I get out of breath very fast. Sat down, and had real trouble catching my breath. Suddenly panic took over, not because I thought I was going to die then and there but because I realised that at the end it might be weeks of feeling just like I did then. It felt like it does when you try and swim underwater for a lap and at the end all you can feel is pain pulsing through your whole body. Except it would feel like that all the time. Possibly for days. That thought made breathing more difficult and I ended up this close to turning the table over and running around like a headless chicken. Of course this would have done nothing and sense prevailed and I sat there and breathed deeply. The only problem with that is breathing deeply also reminds me (via the wheezing) that I can’t breath well. Panic stuck around for a fair bit, I couldn’t concentrate on reading my book so I watched TV. Still don’t feel like I can concentrate but I am bored with TV. It is a strange complaint considering what is going on but I feel really stupid sitting here watching TV I am bored with, there must be something more exciting I could be doing.
Breathing a lot better now. Not sure why, maybe just because I have been resting. Also had a bit of a nap. Have not been sleeping well and this has been making the breathing much worse. A week ago there was something wrong with my breathing but it did not concern me. Now it seems to have got so much worse very fast. It also seems to be happening around the same time that the MP would be really kicking into gear so I am wondering if it has something to do with that. I guess we will just have to wait and see.
Nothing new or exciting to report. All in all a pretty boring post. The panic attack did not feel good. In fact at the time it felt horrible, and it made me dread the idea of spending weeks feeling like that. I guess if it gets to that I will demand to be put under a lot of sedation to escape the feeling but it is scary to think about. Hopefully it does not come to that.
Anyway, going to try and read again. Hopefully I can concentrate now.
Breathing has got worse fast. Five days ago it was on my mind but quite easy. Now I am wheezing and struggling to get enough air. Also feel like my anus is on fire, hence the 430 blog post. Having problems with bowel movements fluctuating between extremes (it’s details like this which I know make you keep coming back for more dear reader, I know what you like :P). Can’t sleep because of pain and breathing and sleep is needed to improve both. Plus I am keeping Amelia up. I could stop shaking her but my pillow isn’t going to fluff itself. Have some other developments to update on. Probably going on a trial, assuming I am fit enough in a week which is not guaranteed given how I feel right now. Melbourne was fine but didn’t sleep well which has made breathing worse. Seeing Jess and Caz was amazing, caught up with Jake but didn’t have the energy to do much else. Oncologist is still good but not perfect. Hasn’t looked into a trial she said she would look into and at one point got my type of cancer wrong. Not sure if this mistake was a case of meaning the right one while saying the wrong one. If it’s not then I think it is a bit worrying. I have never found an oncologist who I really trust or feel is looking out for me.
Anyway got to sleep. No time to proof read, sorry about poor english.
I still think that I could survive. Sometimes more than others but I certainly think there is some hope. Nothing really of substance to write but I feel that often the times of hope get lost because they are not times I need or wish to blog. So just a quick note. Off to melbourne tomorrow. Looking forward to seeing people, even hospital might not be too bad.
Wake, pill, relief, couch, book, tv, food, enema, fear, shower, fear, couch, book, tv, pill, relief, bed, hate, sleep, repeat.
I am amazed at my level of health considering the progression out disease. I am convinced that the best thing I have done is the diet and lifestyle. Every time I do something the oncologist wants me to do things get worse. Radiation sent things crazy. There is no profession I hate more. This hate is completely unfair but true.
I feel I am pretty much ready to die and yet despite finding new tumors what seems like every day (it is not that often) I don’t seem to be getting more sick. This seems a good thing, and mostly it is. But if there is one thing I been can not stand it is to degrade to nothing while still living. A broken mind in a healthy body and a healthy mind in a broken body is my worst nightmare. It terrifies me that if my situation gets so bad I am in constant pain nobody can help me end it. The laws in this country disgust me. I must admit my hope for survival is almost gone. I stay on the mp but I feel it’s too little too late.
In the end I am tired. Three years of this has drained me of all my reserves. I have been the main driving force and I am tired. So tired.
Melbourne next week. There is little I would want to do less. I hate it, I really hate it.
I look back to two showers in late 2008. Struggling with my life direction a shower is an escape. A cleansing and pure experience. In the first I glance down and think to myself “my lymph nodes are up”. I have been feeling wrong for weeks before this. I say wrong, it is a strange way to describe how one feels, but sick is too simple although it is also true. I feel wrong, my lymph nodes are up; I believe now that I knew deep down I was very sick. I did a herculean job of ignoring that fact. The second shower, a few weeks later. “my lymph node is still up”. There are little red, painful lumps on my foot right next to the large red swelling that I was told again and again was scar tissue. My continued denial, although determined could not hold out much more.
Before long I was showing in hospital. Tests, scans, bloods and countless doctors. I know now why I ignored the problem so completely. I would do anything not to go back to hospital. I hate it more than I can describe. My life is tottering on the edge. I no longer really wish to continue to watch myself degrade. It is almost intolerable for a person who enjoyed so much physical activity. If I was a man who believed in a vengeful and vice despising god I would think myself being taught a lesson. Pride is natural, a person not proud of themselves is a sad person. Now my pride drags me down and holds me under. There is nothing left for me in this body. Only this mind continues to please me. My body, I love, but it is gone. Nothing can save it now. I grieve more than I thought possible.
And so I look back at those two showers and I do not blame the boy who pushed down any suspicion. What has become of me now is intolerable to the point where its contemplation is not possible. I grieve for my old life and I look to whatever comes next. Certainly life had little left to offer.
Its amazing what brings it all home. I just opened the door and the day is cool and fresh. I thought of all the days like this that I have gone climbing with good friends and I got really sad. So many good memories that I would not do away with for anything, but they really bring it crashing home. I will almost certainly never go on one of those trips again. And I used to love them so much. It is sad, that is for sure.
I could go on one again I guess. But it would not be the same. I couldn’t climb, I would get uncomfortable quickly, it would just make me realise even more painfully what I have been reduced to. People say, “you can still go”, but I really can’t. It would just make me feel worse and exhaust me. The sad truth of it is that that part of my life is almost certainly over.
It is a pity that my first post in a while is so negative. I have actually had some good moments recently. But I guess sadness compels me to write so here it is.
I have two lumps on my left testicle.
I approach a readiness for death that is new. There is almost a sense if nervous excitement. That feeling you get when being thrown into a new and completely unknown situation which has the possibility to either destroy or make you. I must admit to thinking more and more about the nature of consciousness. It is so beyond our realm of understanding that to raise theories about what happens after death is like someone who watches and believes Today Tonight claiming to understand the nuances of climate change policy; (please forgive my bringing up of such trivialities as the poor quality of australian journalism and general understanding of complex issues such as climate change. As a man who is dying and can see perhaps more clearly than most what is both truly important and truly going on I am infinity frustrated with the populace of the country of my birth.) Certainly death is the ultimate mystery. It is one moment we all must face. And yet as I look at society I realise how much everything everybody does is denying this one universal truth. We don’t talk about death. We glorify it in film while pretending it will never happen to us. We work far too hard on things that ultimately have very little importance. How many hours of bad tv have you watched? Probably a lot, I know I did. And yet how many hours have you spent contemplating life and trying to understand the nature of consciousness? I’m going to go out on a limb here and day not much. And why would you? The very idea if doing so brings images if social ostracization. In the end understanding who we really are and preparing ourselves for death is one of the most important things we can do. For we all must face death, and only in being comfortable with this can we truly live our lives. That is not to say that we should all become buddhist monks and go and live in a cave. No, doing this would be a knee jerk reaction too far. Humankind is a glorious thing and the exploration of its traits and behaviors through experience is an opportunity that its under appreciated. The study of science, from the cosmos to the atom is so glorious that even now my eyes fill with tears. (Tears both for its beauty, for my loss of it and the attitude of the general populace towards the miracle that we can appreciate the mysteries of life.) Only in exploring death and the very nature of our “souls” can we approach the freedom necessary to live life fully and deservedly.
And yet I look around and I am disgusted with what I see. So little thought is put into life. So many use short term pleasure as their yard stick with which to judge the way through life. In doing so they open themselves up to the exploration of those who chose to dispel fears of their own mortality by stockpiling money and power at the expense of others. One of the hallmarks of financial markets in recent years has been the increase in leveraged takeovers by reckless people using other peoples money to buy and strip firms. The destructive nature of their activity is rarely discovered before they have made their millions and left a company usually no better than it was before, and often worse. The activity of these people does not contribute to society, it merely redistributes wealth from those who don’t have much to those who have a lot. The poor stay happy, in front of their tv, the rich laugh all the way to the bank, and nobody is really happy or benefits in any way.
There are of course many truly good people out there. I have been honored to know so many good people and count many as friends. But amongst a society so shallow and fearful of death it is sadly difficult to explorw deeper aspects of everything.
As much as I disagree with many tenets of religion, its decline has been one of the major causes of modern societies increasing disinterest in all topics to do with death and meaning. Religion, when preached well, encourages a deep reflection on your life and death that can have profound benefit. Sadly the modern religion is continuous pleasure. We deserve this pleasure, we work hard and the advertising person constantly reminds us that we “have earned a treat”. The increasing rate and volume of data availability is a sad reflection of our inability to rest in silence and contemplate true meaning of any kind. The amount of material on the internet dealing with the cutting edge of scientific endeavor pales into insignificance when compared with the amount dedicated to the latest gossip on people more attractive but often less intelligent than ourselves.
I can almost picture myself reading this article before I got sick. I would read it with a sense if smugness. “I am not one of the people this is talking about. I genuinely understand my life and myself. And hell, even if I don’t really, I have all the time in the world to figure things out”. And sadly I know many people reading this today will think the same thing.
Now I must try and be clear. I have nothing against pleasure, and the activities that many use to chase it. But one thing must be understood. Pleasure is not happiness. Increasing the amount of an activity that gives you pleasure will not necessarily increase your happiness. This is especially true if the activity is one that dulls the mind and focuses attention away from true understanding of self. If you were to win the lottery tomorrow, buy that dream car, quit your job, go to the pub most evenings with an ever increasing number of mates, whittle away the years pursuing quick pleasures at the expense of long term insight, it is unlikely that you would be any happier than you are right now. In fact one could make a compelling case for you being less happy. True happiness in life has nothing to do with money, possessions, friends, or indeed anything outside yourself. True happiness is within, and I would argue that it is untimely involved with how much we truly look at ourselves. How much we explore our “souls”. How much we contemplate the temporary nature of life and what this means.
So, a post that started out with a simple update on my mental state had morphed into something far more complex and philosophical. Sadly I suspect I am not articulate enough for people to have taken much from it, our even read it in full. But in the end I guess it is something I needed to say and this blog achieves that if nothing else.
May you all find true happiness in whichever way you can. I offer my opinions freely and without agenda. I do not pretend to be right, but perhaps I can stimulate thought. Never be content with someone else’s ideas. Always infuse into them your own unique take on life, the universe and everything.