Phil K has been an great friend to many people around the world, I know a lot of people would like to show support and love to an amazing man, an even more amazing friend. He’s always got time for people and is so passionate about a many things, including friendships, food, music and music production and DJ equipment amongst other things. What he has been going through the past 6 months or so hasn’t been easy to say the least. I’m so proud of him, he still manages to smile and have a laugh even through all of this.
Below is his journey so far, from Phil himself.
Please show your support, like and share. If you’re in Melbourne we would love to see you at Ladida on the 30th of March from 2 pm to support Phil.
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.