Blog update 26 August 2016

Blog update 26 August 2016

OK first to some housekeeping. I am still getting back to everyone about birthday wishes. Its taking time but i promise i will and i am about halfway through at the moment.

I have not been in a position to check messages on my phone since the 11th of august. what do i mean by this? Simple i am mostly functional late at night. This is is something i have mentioned many times over the past year but people continue to give me a hard time about not answering their phone calls. If i check my phone messages and don't call people straight back then its more than likely i will forget to call the next time that it is reasonable to call i.e. not 2am. If you send me a message on facebook or email me on sportzscene16@gmail.com i will return your message promptly. If you wish to speak to me on the phone please give me a time and date. And time does not mean "i'll call you in the morning". i am simply not able to wait for hours for someone to call anymore and no there is no "best time to call" anymore. My body simply shuts down now when it has had enough and goes to sleep through exhaustion. For the couple of you that understand this already you know this doesn't apply to you.

For my overseas blog readers i apologise for you having to read this as it obviously doesn't apply to you as none of you call lol.

I now have a computer set up next to my bed. I literally wake up check emails and fall back asleep again after taking my meds. This is my life now. Between the large amount of pain killers and the huge numbers of drugs that are keeping me alive for the moment.

As human beings the truth is our first instinct is to tell someone who is sick to fight hard and think positively.  I wish i could express strongly enough just how irritating this is to most of us. Nobody is more aware of what is required to stay alive than the person who is sick. I know its the default language of people because they are uncomfortable about discussing the subject of death and the sometimes long road towards it but it really is time as a society that we learned to talk about it.

Too many times i have been in situations where people have spent time with me and talked for an hour then left with a kiss on the cheek and a "you take care now". If i look back over that hour, the conversation is almost always about subjects that mean fuck all when the truth is that the person who is sick and actually dying (not the case in the vast majority of cancer patients although you wouldn't know it by the way people go on) really wants to talk about what is happening and small amount of future ahead. Some of us actually do care about legacy and how we will be remembered.

Its too late for me now and frankly since i moved to Far North Queensland most people have shown little genuine interest apart from the occasional social media comment. It is particularly upsetting when people come up to FNQ and even the town i now live in and then even throw up pics on facebook saying what a great time they had but apparently they didn't have 10 minutes to pop in and say hi to their terminally ill friend.

If i had the word cancer in my diagnosis i already know their behaviour would be completely different as they show so in their interactions on social media.

It really is time for society to start to realise that there are far worse things to live and die with than the various forms of cancer. Unless its a really nasty one like pacreatic or bowel cancer most can at least be given years of remission if caught early enough. Terminal heart transplant vasculopathy or failure is 100 percent fatal in itself and also usually comes with horrible other problems that will take you out in incredible pain and drowning in your own lung fluid. Yeah lots of fun. I have actually had friends know about my condition and totally treat it like its not that big of a deal but after making a joke one day about cancer they were absolutely horrified because they thought i might have a form of cancer. Can you imagine how frustrating and upsetting it was for me when for many months after telling that i was terminal with my heart and lungs and they really weren't that concerned but as soon as they thought i had a cancer diagnosis they they were moved to tears with worry. How do you think that made me feel. They didn't care about the thing that was actually killing me but a mystery mistake cancer diagnosis and all of a sudden they cared. We live in a world where it is possible to be smarter than ever in human history yet we are now dumber than ever. Sigh :(

My health is deteriorating at a slow but painful and difficult rate. I have quite deliberately kept information to a minimum and not put pictures on social media over the last few years as quite frankly i didn't wan't people seeing my deterioration. Turning up to my high school reunion in a wheelchair and only being able to stand for short periods of time was something i did simply because i knew it would be my last reunion and i didn't want to miss everyone but the truth is i hated the way i looked that night.

Pictures of myself near death in a hospital bed  are not my idea of fun and i don't intend to start now.

All i would ask is if you are up this way and you have ever thought of yourself as a friend. Are you really so busy that you can't spare 10 minutes for a catch up as it might be our last. Also ask yourself if i have ever not been there for you when you asked me. mmmmm.

There was also what amounted to a death in the family with a close family friend's eldest dying under terrible circumstances after contracting Ross River Fever. He was only 39.

R.I.P. Michael Weston

Ok what's been happening since my last update?

Once again the people i deal with at Queensland Health have shown that they can turn incompetence into an art form. No really i now recognise that it takes real skill to be so inept. Their greatest failing is communications. Having the greatest doctors in the world doesn't mean a thing if you are unable to pick up a phone or send an email. I used to pull people up all the time for using old stereotypes against the Queensland Health workers as the public service jibes were unfair but lately it has become almost impossible to stick up for them when they continue to make blatant mistakes that can put a patients life at risk and continue to do so.

Word of advice for public servants in Queensland Health. You are not in an occupation where you deserve to be put up on a pedestal. When you make a mistake own up to it and take ownership of it and not only will you hopefully not end up killing someone but you will also save yourself from getting sued. Countless studies down through the years have shown that doctors and nurses that take ownership of their mistakes and show the patient and their families genuine remorse rarely get action taken against them however those that try to cover their arse earn the hatred and anger quite rightly of those patients and families. That is where i am and i now feel i have no choice but to finish gathering my evidence and taking action against two inept doctors who are just plain dangerous. Lets make it very clear, there is good and bad in all occupations and health is the same. The major difference is when a doctor stuffs up at the pointy end of medicine or a nurse tries to give medication which a particular patient is not allowed to take but insists even when the patient says no, people die.

Bottom line learn to listen to experienced intelligent patients who know a bad call when they see it.

So.....the Olympics have been and gone and once again Usain Bolt confirmed his greatness as the best track athlete in history. Even though he has said otherwise who would bet against him finally training for the 400m and the long jump lol It was the first Olympics since 1976 that i actually found myself bored watching. Thank goodness European football started a bit early this season :)

I have found myself extremely "down" for the last couple of months with writing being very difficult plus some computer problems. For those of you around the world keeping track of my book i really am trying to get back into it I have just found it really difficult but i will get stuff written soon as the next chapter which will most likely cover the first couple of years post transplant.

Well that pretty much covers things for the moment. I have major hospital appointments over the next few weeks so no doubt things will get interesting as they have started already with my online telehealth appointments moved from the town i live in to Cairns about 80 kilometres away defeating the purpose of the online appointment. Nobody at Queensland Health is prepared to answer me as to why it has been moved. Ah sigh situation normal.

take care love almost all of you lol

Darren xoxoxo