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I’m sure some of you have heard that I haven’t been doing so well
lately, and honestly, it’s been a pretty challenging few months. Right
now, I have a much clearer picture of where i’m at and where I’m
heading so I feel like now is probably the right time to share with all my
friends what’s been going on, and my plans for the future.
I started feeling something was wrong in February last year.
I went to see doctors many times between February and June. I had
countless tests and apart from a couple of obvious age related ailments
that were deemed not dangerous, they really couldn’t figure out what
was wrong with me. I had countless scans, ultrasounds and blood tests
but things weren’t really changing for the better and I wasn’t really
getting any answers. I knew something wasn’t right so I kept going
back.
Then on the 1st of July I received the shocking and unexpected news
that I had bladder cancer and that I had to go in for surgery
immediately. It was unexpected news as a week earlier I had received
blood results that said there were no cancer markers, so whatever it
was came on really quick. It was very terrifying news as there are no
treatments for bladder cancer. I had to wait 2 weeks to have surgery
and those 2 weeks were some of the hardest days of my life. I couldn’t
sleep. I was up all night twitching, having to face my mortality. Thinking
about things nobody really wants to think about and having to accept
that it’s probably going to be over soon. I wouldn’t wish those days upon anyone.
When I went for surgery, there was too much cancer in my bladder so
all the surgeons could do was a biopsy. The biopsy came back after 2
weeks and rather than originating in my bladder, what I had was an
aggressive form of prostate cancer that had spread into my bladder,
which is not very common.
This kind of cancer doesn’t generally act in this way and doesn’t usually
happen to people as young as me; I’ll be 50 in May. As bad as this
sounds, and it is, it was a little more positive than bladder cancer as
there are treatments for prostate cancer which meant I wasn’t going to
die quickly.
Because of the fact this cancer had acted in an uncommon way, I
moved my care over to Peter MacCallum Cancer Centre. According to
the medical team at Peter Mac there was no chance of further surgery
as the cancer had spread too far and the doctors there were putting me
through the standard procedures to treat this disease. The symptoms of my disease were really starting to affect my day to day life at this stage and it was getting really hard to function normally. And this was only going to get worse as the months went by.
In November while at the hospital discussing Radiotherapy with another Doctor, by chance but fortunately I met a surgeon named Professor Nathan Lawrentschuk who took it upon himself to take charge of the situation as he saw how young I was and looking into my file didn’t really agree with the medical team looking after me. He told me that the treatment they were offering me was really designed for older men but being younger he said I was strong enough to deal with the surgery and that I had to roll the dice and go for a radical surgery to remove everything. It was really my only chance and that at the very worst, all my symptoms would disappear.
As December rolled around some more scan results came through and
honestly, they were pretty bad. The medical team at Peter Mac wanted
to put me into chemotherapy immediately and that my time for surgery
was running out. I was told that unless I can have surgery within the
next five days they’re going to have to start chemotherapy with no
chance of surgery after that. Nathan organised everything in 24 hours
and I was on the operating table the following day.
The surgery was the hardest physical thing I have ever been through.
Coming out of that surgery was really traumatising and left me an
emotional wreck. I couldn’t even deal with looking at myself and what I
had become. There were a few moments there when it was all too much and I was done with everything. But every day I felt and feel like I’ve got through the worst of the physical pain and that tomorrow will be better.
The reactions to the medications has also been a tough ride. Prior to
the surgery I begun hormone deprivation therapy, which I’m still on.
Prostate cancer feeds off testosterone so they make your body stop
producing it so it will suffocate the cancer cells. When they start fucking with your hormones you don’t know who you are. I don’t really feel like myself at times, I’m very emotional and it feels like that excitement you get from being passionate about something has diminished.
After all the surgery the doctors have now found a spot of cancer on my
left shoulder in a lymph node and possibly microscopically elsewhere,
which means I need to have chemotherapy but I can’t as I’m too weak
from the surgery. They have offered me a pill called “Zytiga” which
basically compounds the hormone therapy and is a treatment they
reserve for after chemotherapy. Because I am not going the correct way and having this before chemotherapy, I’m not eligible to receive the treatment covered under the PBS and these pills (x12) will cost me
$20,000 a year.
I’ve been told that Zytiga works for X amount of time. We just don’t
know what that X is. It could be 1, 2 years, could be 5 years. There are
patients who have been on it for 3 years, one for 5 years. I could
probably cover it if I knew it was only one or two years. But it’s a lot of
money and I’ve got a stack of other bills I still have to pay for specialists
and other treatments and it’s starting to become quite stressful.
I haven’t worked since September and the bills are starting to pile up.
Private health care (which is also expensive) covers most things, but
not everything. Every time I see a specialist it’s a few hundred dollars,
and some weeks its twice or three times. And that doesn’t take into
consideration alternative medicine. It’s really expensive.
So that is my journey so far but please don’t take this as poor Phil. Even
though the Doctors call me “terminally ill” (isn’t life itself a terminal
illness?) I consider myself a very lucky person. I may end up going a bit
earlier than other people but through positivity and being positive I want to hang on for as long as I can. I can only focus on the positives now, and there are many but most importantly is that the relationships with my friends and family have grown stronger. You realise that they’re the most important things in life. I’ve been through a lot of pain but I’m past the worst and want to get my body strong again. I want to be even stronger than what I used to be. I want get back to work. i want to get back to music and DJ. I want some sense of normality.
While I’ve shared my personal journey I see this as another positive and
that is the opportunity to get the message out there for others to get on the front foot on their own personal health.
A lot of my friends are younger than me and haven’t had to deal with
this sort of stuff and it always seems like it will happen to somebody
else. This sorta stuff can happen really fast and it can happen to any of
us. If you’re not feeling right, don’t listen to a doctor if they say there’s
nothing wrong with you. If you feel something is wrong, then something IS wrong. Insist and persist. The only way to stay on top of this is to religiously go to the doctor. 18.1 million people get diagnosed with cancer every year in the world. Prostate checks aren’t fun,
colonoscopies are even less fun, but you gotta do it.
Of all the things that cause the body harm, stress is the one. If there
was one thing that I could tell people to avoid. It’s stress. Everybody has to find their way to deal with their stress. It doesn’t matter how you do it, you gotta do it. Stress is the one that will fuck you. I think its the one thing that got me.
In all my years I have never really asked anybody for help, in fact I’ve
always been there on many occasions offering to do whatever I can to
help out people in situations such as mine and different situations. In
this case I am asking for you help.
In addition with the GoFundMe page we’re also throwing a party at
Ladida in Melbourne on March 30th kicking off at 2pm to raise as much
money as possible to help with my ongoing treatment and help me get
back on my feet. There’ll be a kids jumping castle set up in the laneway,
photo booths and popcorn for the kids and music running across three
rooms featuring all of my friends. I really want this to be a positive day
we’re we can all get together and have a really great time.
I can’t wait to see everyone there and if all goes to plan I’ll hopefully be
well enough to play as well!!
Thank you for taking the time to hear my story and hope to see you all
soon.
Much Love
Phil K
lately, and honestly, it’s been a pretty challenging few months. Right
now, I have a much clearer picture of where i’m at and where I’m
heading so I feel like now is probably the right time to share with all my
friends what’s been going on, and my plans for the future.
I started feeling something was wrong in February last year.
I went to see doctors many times between February and June. I had
countless tests and apart from a couple of obvious age related ailments
that were deemed not dangerous, they really couldn’t figure out what
was wrong with me. I had countless scans, ultrasounds and blood tests
but things weren’t really changing for the better and I wasn’t really
getting any answers. I knew something wasn’t right so I kept going
back.
Then on the 1st of July I received the shocking and unexpected news
that I had bladder cancer and that I had to go in for surgery
immediately. It was unexpected news as a week earlier I had received
blood results that said there were no cancer markers, so whatever it
was came on really quick. It was very terrifying news as there are no
treatments for bladder cancer. I had to wait 2 weeks to have surgery
and those 2 weeks were some of the hardest days of my life. I couldn’t
sleep. I was up all night twitching, having to face my mortality. Thinking
about things nobody really wants to think about and having to accept
that it’s probably going to be over soon. I wouldn’t wish those days upon anyone.
When I went for surgery, there was too much cancer in my bladder so
all the surgeons could do was a biopsy. The biopsy came back after 2
weeks and rather than originating in my bladder, what I had was an
aggressive form of prostate cancer that had spread into my bladder,
which is not very common.
This kind of cancer doesn’t generally act in this way and doesn’t usually
happen to people as young as me; I’ll be 50 in May. As bad as this
sounds, and it is, it was a little more positive than bladder cancer as
there are treatments for prostate cancer which meant I wasn’t going to
die quickly.
Because of the fact this cancer had acted in an uncommon way, I
moved my care over to Peter MacCallum Cancer Centre. According to
the medical team at Peter Mac there was no chance of further surgery
as the cancer had spread too far and the doctors there were putting me
through the standard procedures to treat this disease. The symptoms of my disease were really starting to affect my day to day life at this stage and it was getting really hard to function normally. And this was only going to get worse as the months went by.
In November while at the hospital discussing Radiotherapy with another Doctor, by chance but fortunately I met a surgeon named Professor Nathan Lawrentschuk who took it upon himself to take charge of the situation as he saw how young I was and looking into my file didn’t really agree with the medical team looking after me. He told me that the treatment they were offering me was really designed for older men but being younger he said I was strong enough to deal with the surgery and that I had to roll the dice and go for a radical surgery to remove everything. It was really my only chance and that at the very worst, all my symptoms would disappear.
As December rolled around some more scan results came through and
honestly, they were pretty bad. The medical team at Peter Mac wanted
to put me into chemotherapy immediately and that my time for surgery
was running out. I was told that unless I can have surgery within the
next five days they’re going to have to start chemotherapy with no
chance of surgery after that. Nathan organised everything in 24 hours
and I was on the operating table the following day.
The surgery was the hardest physical thing I have ever been through.
Coming out of that surgery was really traumatising and left me an
emotional wreck. I couldn’t even deal with looking at myself and what I
had become. There were a few moments there when it was all too much and I was done with everything. But every day I felt and feel like I’ve got through the worst of the physical pain and that tomorrow will be better.
The reactions to the medications has also been a tough ride. Prior to
the surgery I begun hormone deprivation therapy, which I’m still on.
Prostate cancer feeds off testosterone so they make your body stop
producing it so it will suffocate the cancer cells. When they start fucking with your hormones you don’t know who you are. I don’t really feel like myself at times, I’m very emotional and it feels like that excitement you get from being passionate about something has diminished.
After all the surgery the doctors have now found a spot of cancer on my
left shoulder in a lymph node and possibly microscopically elsewhere,
which means I need to have chemotherapy but I can’t as I’m too weak
from the surgery. They have offered me a pill called “Zytiga” which
basically compounds the hormone therapy and is a treatment they
reserve for after chemotherapy. Because I am not going the correct way and having this before chemotherapy, I’m not eligible to receive the treatment covered under the PBS and these pills (x12) will cost me
$20,000 a year.
I’ve been told that Zytiga works for X amount of time. We just don’t
know what that X is. It could be 1, 2 years, could be 5 years. There are
patients who have been on it for 3 years, one for 5 years. I could
probably cover it if I knew it was only one or two years. But it’s a lot of
money and I’ve got a stack of other bills I still have to pay for specialists
and other treatments and it’s starting to become quite stressful.
I haven’t worked since September and the bills are starting to pile up.
Private health care (which is also expensive) covers most things, but
not everything. Every time I see a specialist it’s a few hundred dollars,
and some weeks its twice or three times. And that doesn’t take into
consideration alternative medicine. It’s really expensive.
So that is my journey so far but please don’t take this as poor Phil. Even
though the Doctors call me “terminally ill” (isn’t life itself a terminal
illness?) I consider myself a very lucky person. I may end up going a bit
earlier than other people but through positivity and being positive I want to hang on for as long as I can. I can only focus on the positives now, and there are many but most importantly is that the relationships with my friends and family have grown stronger. You realise that they’re the most important things in life. I’ve been through a lot of pain but I’m past the worst and want to get my body strong again. I want to be even stronger than what I used to be. I want get back to work. i want to get back to music and DJ. I want some sense of normality.
While I’ve shared my personal journey I see this as another positive and
that is the opportunity to get the message out there for others to get on the front foot on their own personal health.
A lot of my friends are younger than me and haven’t had to deal with
this sort of stuff and it always seems like it will happen to somebody
else. This sorta stuff can happen really fast and it can happen to any of
us. If you’re not feeling right, don’t listen to a doctor if they say there’s
nothing wrong with you. If you feel something is wrong, then something IS wrong. Insist and persist. The only way to stay on top of this is to religiously go to the doctor. 18.1 million people get diagnosed with cancer every year in the world. Prostate checks aren’t fun,
colonoscopies are even less fun, but you gotta do it.
Of all the things that cause the body harm, stress is the one. If there
was one thing that I could tell people to avoid. It’s stress. Everybody has to find their way to deal with their stress. It doesn’t matter how you do it, you gotta do it. Stress is the one that will fuck you. I think its the one thing that got me.
In all my years I have never really asked anybody for help, in fact I’ve
always been there on many occasions offering to do whatever I can to
help out people in situations such as mine and different situations. In
this case I am asking for you help.
In addition with the GoFundMe page we’re also throwing a party at
Ladida in Melbourne on March 30th kicking off at 2pm to raise as much
money as possible to help with my ongoing treatment and help me get
back on my feet. There’ll be a kids jumping castle set up in the laneway,
photo booths and popcorn for the kids and music running across three
rooms featuring all of my friends. I really want this to be a positive day
we’re we can all get together and have a really great time.
I can’t wait to see everyone there and if all goes to plan I’ll hopefully be
well enough to play as well!!
Thank you for taking the time to hear my story and hope to see you all
soon.
Much Love
Phil K
Hernan has the gofundme link on his Facebook 
But this is the sort of thing that a Facebook should be doing . The more big internationals that put this up on their Facebook pages the more people reached. 
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