The biopsy of my lungs

 

To determine the type of cancer I was dealing with, my drug dealer decided the safest way to do a biopsy was to operate on one the four nodes on my lungs. The largest cell, which he planned to biopsy was approximately 23mm wide. At this stage it would have been too dangerous taking it from my kidney for fear or rupturing the cancer cell and having it bleed out into my body, since it was so large in size.

When I arrived at the Mater hospital I started filling out my forms. It was interesting because I usually raced through them ticking ‘No’ to everything including heart disease, asthma, am I a smoker, am I pregnant etc., however this time I ticked, ‘Yes’ next to Kidney Disease and wrote, ‘Renal Cancer’.

The nurse then greeted me and asked me to follow her into a small room, where she went through my paper work. She then stopped, looked up at me and asked, “I see you have a history of Renal Cancer?” drawing her eyebrows together. I had a small chuckle and replied, “Does five days count as a history?” She was a bit taken aback by my answer and asked me if I had only just found out, to which I replied, yes. As she read further along she asked me if this is why I was having the biopsy on my lungs. I had to explain that unfortunately they found it too late, which is why it had already metastasized and gone to my lungs.

She needed to weigh me so I jumped on the scales and read 68kg. I was surprised because I don’t normally weigh myself but I know that I’m usually between 72kg and 74kg. Although when I asked my friends and family members, they had all agreed that I looked like I had dropped some weight in the last week, most likely due to stress.

The nurse then handed me a gown and asked me to put on and some very sexy paper undies. When I was dressed, I went into the room and laid down on the bed. As the nurse was putting the cannula in my arm, preparing for the operation, I was starting to feel a little nervous just thinking about the fact that they were going to put a needle through my chest, into my lungs, to hit a cell which was 23mm in diameter.

I tried not to think about it as they wheeled me down into the radiology room. This is where they were going to guide the needle into my chest under a CT machine. When I got to this room  I had to transfer onto a CT bed. As I did this, I looked behind the glass screen and noticed about five or six people standing there watching. I commented to the nurse that it seemed like a lot of people for such a small procedure. She explained that they were mostly university students here on prac.

As I went to laid down on my back she stopped me and asked me to face down but with a bit of a twist to one side. Just as I got somewhat comfortable she ripped open my gown from the back, exposing my super sexy paper undies to all of the university students. I was mortified, scrunching my face, thinking just kill me.

They didn’t completely knock me out for this procedure, they only sedated me. Therefore, I remember getting off the CT bed, then hopped back onto the wheely bed where they took me back into the recover room. The nurse that looked after me was incredibly nice, chatting about choosing the right oncologist and urologist, hoping they could operate. While recovering and chatting to the nurse my phone rang and when I answered it and heard the voice of the receptionist from the other oncologist, I realised that I had completely forgot to cancel my other appointment. I felt so bad, apologising a number of times and had to explain that I had just had my biopsy and would get back to them as soon as I could. With everything that was going on, so many things had been slipping my mind.IMG_0089

As I was laying there, with the minutes counting over, I realised that my breathing was getting difficult. Every time I breathed in, I felt this awful pain in my chest. I let the nurse know and she checked over me saying that she would be back in another 15 minutes to see if it was getting worse. When she came back and discovered that the pain wasn’t going away she decided to send me back downstairs for an X-ray of my chest. They found I had a small pneumothorax, which is where air gets caught between the lung and the chest wall. In severe cases this can collapse the lung. The doctor who performed the procedure then came in to see me, telling me that when he removed the needle a small pocket of air got in and that it should go away in a day or two. He then gave me some Panadiene Forte for the pain and advised if it got any worse to come straight back in. After a long day, a very embarrassing procedure and a new found pain in my chest, my brother finally arrived to take me home.

Bone Scan, lets see how far this thing has spread.

I started the week off by going to the gym, trying to keep my life as normal as possible. However, this illusion only lasted a couple of hours, as I was soon on my way back to the Mater Hospital for a bone scan. I found my way through to the nuclear medical area and checked in with the nurses, filling out all of the forms that were required. I was then guided into a room where a nurse injected me with a contrast liquid. However, this time they asked me to leave for two hours and drink a litre of water to get whatever it was they injected me with to go through my system.

My parents came to this appointment with me so we decided to go to the nearby shops to kill some time. I couldn’t feel the contrast in my body but as we walked around I couldn’t help but think about what this stuff was doing to my insides. I wasn’t really able to pay full attention to my parents as we wandered around.

Soon enough though, my sister called to check in on me. She also happens to be a nurse, so I was able to easily explain the details of why we were there. However, by the time I finished talking to her, I realised that I hadn’t even been able to drink the litre of water. So we quickly stopped into the nearest store, bought a bottle of water and I sculled it down before heading back to the hospital.

(Below: me trying to make this journey fun with my friends)

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For the bone scan they used two machines – one included a CT Scanning machine and the other I had never seen before. The only thing that I can remember from it, was that it was cold laying on the table as the machine spun around you. Overall it was fairly simple procedure though.

After this was completed I said goodbye to my parents and decided to make use of the rest of the day by going into work. I wanted to speak with my area superintendent again, as well as inform my operations superintendent. I have known my ops superintendent for a very long time, so I felt comfortable enough to open up and be honest with him about what was going on. I called ahead and met both of them in the first-aid room at the front gate. We sat down and I handed my operation superintendent my doctors referral letter, which explained that I had Stage 4 Renal Cancer. I then proceeded to explain what I had been going through over the last five days, including all of my medical appointments. I also had to let them know that I was scheduled in to have even more tests done that week, one being my lung biopsy, which was to be taken the very next day. This would determine whether or not my cancer was operable or not and possibly how aggressive it was.

My two bosses were extremely sympathetic and supportive of my situation. Due to my workplace being a major hazard facility, we decided that I shouldn’t return to work until I had a clear direction on how I was going to be treated. They also helped me decide that it would be easiest to inform everyone by typing up a letter, which my shift manager could read out to everyone that night.

I was happy to do it this way because it saved multiple conversations and if everyone received the same information, at the same time, it wouldn’t just be hearsay or gossip. Since we all work a rotating shift, I also thought if I left it to word of mouth, Chinese whispers would also, no doubt, turn my cancer into HIV!

My first weekend after diagnosis

Knowing that I had my bone scan booked in for Monday and the biopsy on Tuesday, it only left the weekend to try and enjoy some normalcy to my life. I had already called in sick for my shift on Saturday so I decided to go surfing down the coast, not knowing if I’d be getting back in the water any time soon. I chased every wave I could, frothing at how good it was. Plus, it was great for me to just be in the water with my brother and a mate, catching waves, laughing and enjoying every minute. Later in the day, I went and had lunch at my brothers playing with my nephew just taking it all in.

(Pictured below: me surfing doing what I love, 2 years ago in WA)

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I left the coast after lunch to drive back to Brisbane, as I decided to go in to work the next day on the Sunday. I was on the phone most of the way home, filling people in on my current circumstance and chatting to friends I hadn’t spoken to yet. By the time I got home I was so mentally exhausted I had to switch off my phone, lay down on my bed and I ended up crashing. I slept for a solid two hours and I realised after that, as much as I wanted to keep everyone in the loop about what was going on it was too mentally draining. I was having the same conversations, over and over, with different people. I made a mental note that I would have to make sure I always had time to switch off and relax because by the time the day was over, it was too much.

I got up on Sunday and started to getting ready for work. It was always the first thing in the morning where I would wake up and remember the cards I had been dealt. That was, by far, the hardest point in the day where I would have to try not to get upset and regain my composure. One of the reasons why I wanted to go into work was to prove to myself that I could focus on something, other than my kidney and lungs. I also wanted to have a laugh with my work mates because the only one that knew about my circumstance was my superintendent, who wasn’t working that day. I wasn’t planning on telling anyone there yet either, at least until I knew more.

Everything was going well and what I had hoped for. I was getting my work done, chatting and laughing with the guys in the control room. However, then my shift manager came in and reminded me to fill in the sick form, following up on procedure. Knowing I wouldn’t be in for the next two nights in my shifts because of appointments, I laughed and told him I would have to fill it in for the next two night as well. He laughed back, possibly thinking I was joking and then walked off. Ten minutes however, I got a phone call from him asking me to go into his office. Knowing he wanted to have a chat, I sat there trying to keep it all together. When I walked in and sat down he asked, “You weren’t joking about having night shifts off were you? Is every thing okay?” I couldn’t lie but I also didn’t want to talk about either, so I just said no. He then asked if it was why I had Saturday off, so I nodded, trying not to loose it in front of him. He seem to understand and just told me that he hoped everything was okay. I swallowed hard and then nodded again, walking out of his office, trying to take deep breaths to prevent myself from breaking down.

I went back to work and was at least happy that I made it through the shift, keeping my focus and getting everything done. But I was also happy when it was time to go home, where I could sit and just chill on my couch, watch some sport and shut off. I didn’t want to think about it anymore.

Meeting the Oncologist

I went to the oncology clinic with my parents and my two brothers and we all couldn’t help but notice that I was the youngest by at least 20-30 years. Before that day, I had no idea what the difference was between an oncologist and a urologist. However, with the help of Google the night before and the way a few people explained it to me I discovered this; If you had early stage Renal cancer you would go in to see a urologist, who was a surgeon specialising in your specific part of the body where the cancer originated and could look at options to remove it. For later stage cancer that couldn’t be removed, you would go and see an oncologist who would attack the disease with drugs only. So from this point onward, I started referring my oncologist as my drug dealer. Stupidly, I kept Googling and typed in what was the survival rate for my cancer was, based on a five year span. For stage 4 Renal Cell Carcinoma it came back as only 8% survival in five years. That hit home pretty badly, so I decided not to Google anything else after that.

(Below, sending a photo to my mates, trying to be funny before my first oncology appointment)

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I can’t really remember a lot from my first meeting with my drug dealer. He was a very fast talker/thinker but spoke like he knew what he was doing and had a lot of experience to back his claims. He did talk about a gene (VHL), which concerned us all, since Pete is my identical brother. If it turned out to be this, it could mean that Pete had a chance at developing the disease at a later stage. We all looked at Pete warning him to go and get the same tests that I had to check his kidneys and other organs.

The meeting seemed successful, as the oncologist calmed my whole family, making a point that he would look at my case as his first priority and was even going to chat to his urologist about the possibility of surgery. However, for him to understand exactly what was needed,I would have to go and get a few more tests. Basically at that point, the CT scan showed that no other organs had been affected, other than my right kidney and both lungs. After the appointment I was to go and get a bone scan, a brain scan and he had also booked me in for a biopsy to test the cancer in my lungs in four days time. Since I had kept the original urologist appointment on the Tuesday, I took a mental note that I would have to change this. Then, as I went to leave the appointment they asked if I wanted to get the brain scan done then are there. I wanted to get it all over, so I agreed and got it done at 6pm that Friday night.

The brain scan had to be completed in an MRI machine with contrast injection, which I had experienced before. However, they asked me to go in and lay down on the MRI with  a cradle for my head to sit in. This was new to me and the freakiest part was where I was lying inside it and the radiologist hit a button, flipped up this cage over my face like Hannibal Lectar. I don’t normally get claustrophobic but since I wasn’t aware this was going to happen it came as a bit of a shock. I had to ask him to take it off so I could mentally prepare myself for it. When he removed it, I took a few deep breaths and nodded that I was ready. Once again, the bird cage snapped over and my face. I closed my eyes and hoped that I wasn’t going to have to keep doing these tests over and over.

(Below. Having to hold the contrast connected to the cannula while they get the MRI ready)IMG_0083

The day after diagnosis

I slept so well the night I was diagnosed, which was probably due to it being such a huge day. When I woke at 5am, a normal time for me, tears instantly started to swell up my eyes having to come to terms with everything. I tried to snap out of though, realising that being upset wasn’t going to cure me. Instead, I got dressed for gym and woke up my brother to come with me, since he stayed over, taking the day off work to spend time with me. It was at the gym I decided that I didn’t want to my life to change. I was proud of what I had built for myself and couldn’t imagine anything being different.

After the gym we headed back to mine, where I had to make the phone call to my dad who was still living in Hobart. We organised for mum to call her friend Leslie who was living a few boats down from my parents. The plan was to get her to go to see my dad as soon as I had finished making the call so he had some one to talk to, if needed. When I finished the call, my brother asked how he was but in all honesty, I couldn’t tell. He seemed calm, either in shock not completely understanding the severity of it or he just remained calm for my sake, allowing me to get through all of the details.

After that, Pete and I headed off to my favourite cafe to have a coffee and sort out what to do next. My sports physician had emailed two oncologist and I had a referral letter for both of them. We decided to Google the two oncologists. The first didn’t sound so great as the bio never mentioned renal cancer as his area of expertise. The second one did, so we decided to give him a call first. Pete rang for me only to be told that we couldn’t get in until Tuesday, which was five days away (being Thursday). Getting off the phone after making the appointment he was pissed off that we couldn’t get in any quicker. I think because I had managed to have a better sleep I was thinking more clearly and sadly remind him that I wasn’t the only one dealing with cancer.

Mum then rang to say that she had spoken to her close friend Meg, who had been diagnosed with a rare type of cancer and technically should of been dead years ago. However, her oncologist had been doing such an amazing job managing her illness she was doing really well, six years on! The point of this was that she was going to ring the nurse for me and see if he could fit me in for an appointment. It was worth a shot getting in to see him, so we agreed, if she could set it up. We then walked down to the florist because I wanted to send my doctor/sports physician some flowers after the great way she handle everything. I also felt bad for her that she was the one who had to deliver the bad news to myself and my family.

On the way there I got a phone call from a work mate asking me why I wasn’t at work. As it wasn’t my normal shift I swore, remembering that I was supposed to go in for a training day. I was supposed to be part of a commissioning team who were going to refurbish part of the unit at work, which was due to commence in the upcoming months. I had to tell him that something had come up and I wouldn’t be able to make it in that day or for my normal shift over the weekend. I could tell that he knew something wasn’t quite right, probably by the sound of my voice, on top of the fact that I never took sick days, let alone an entire week.

Because of this, I had a chat with Pete and decided that I should probably go in to work and see my direct superintend. I had to let her know what was happening and that I probably wouldn’t be able to be part of the commissioning team. There was still enough time that she may of even been able to find someone to take my place. Plus, I had no idea what was going to happen and thought it best to give her as much notice as I possible and then I also wouldn’t feel like I was going to let my work mates down.

So I made the call and met her at the front gate where I explained what I had been diagnosed with and that I had no idea about my future or my treatment plan. I did promise to keep her as up-to-date as I could though and she was very understanding, saying she would work with me, as would the company.

(Below, mum drawing the dimensions of the tumour in my kidney, my kidney was about 3 times its normal size.)

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By midday, thanks to mums quick investigating, I was able to call the oncology clinic that Meg had attended. They said they would try and book me in for the next day and asked if I could quickly email all of my referrals and then call back in a few hours to check. When I did call back the receptionist said she was unsure if the oncologist could see me since the referral was from a sports physician… not a GP. This was frustrating again because I couldn’t see the difference, they were both doctors and I explained to her that I didn’t even have a GP. She understood not only the urgency to the matter but that it was an insignificant part and said she would try her best and would get back to me as soon as she could. Luckily, by late afternoon on Thursday the oncologist had agreed to see me the next day at 4pm. This felt like a small amount of relief because at least then we could finally get some answers with someone that had come highly recommended.

Finding out the bad news

The afternoon, directly after my Ultrasound and X-ray I had a physio appointment. I was lying there, with her working on my muscle pain and I started to talk to her about my day. It seemed like talking about it, had actually made everything sink in that the events of the day were not quite normal.

After this, I went home with my mind running a million miles an hour. I just sat on the couch, expecting a phone call. At 5:30pm on the 1st March, 2017 the call came in, asking me to meet my sports physician, the one who had ordered all of my latest tests. This seemed a bit strange because at this time the medical centre should have been closed, which made the feeling in my gut get worse.

I quickly jumped in my car, feeling a little anxious and drove the two minutes down to the medical centre. As I got there the receptionist was carrying two glasses of water which she placed inside the doctors room. Again, I knew this wasn’t good. I should also point out that prior to leaving for the medical centre I threw my house keys in my letterbox. This was because I was supposed to be meeting with my two brothers for dinner, Pete my identical twin and Jeff my older brother who was celebrating his 39th birthday.

I walked in to the doctors room and sat down. I could actually see she was nervous, so I asked, “I’m guessing the stenographer found something and that’s why I had the CT scan?”

She replied, “I’m sorry I was in surgery today and didn’t know they were going to do that”. She then laid all of the paperwork down on the table, looked me in the eye and proceeded to tell me that I had, “stage four renal cancer and that it had spread to my lungs”. My first questions was, “Is stage four bad?” to which she replied, “Yes” looking rather upset.

She said that it has spread to my lungs, so I asked her if it had spread to only one or both. She pulled out my CT scan showing me that it was in fact, in both of my lungs.

I was in shock but I knew at that time that you could live without a kidney but you can’t live without your lungs. It was in this moment I realised that I was fucked.

The rest of the conversation, which seemed like a bit of a blur, was along the lines of… she would usually refer me to go see a urologist but because it was so advanced she had to refer me to an oncologist. I had no idea what either of those two things were and was starting to feel like it was a little too much to take in.

At this point she asked if she could call some one and at first I said no because my two brothers were waiting for me to go celebrate Jeff’s birthday. I then got a message from Pete, saying they had just got to my house and would meet me at the pub instead. It was at this point when I broke down, not knowing if I could tell them when I got to the pub. The doctor was great and kindly rang them both for me, asking them to come into the clinic, giving them instruction on how to get there. When they turned up I did my best to explain what I just found out, with the doctor filling in the gaps. I felt so sorry for her as she was a sport physician, used to telling people they have a torn hamstring or ligament, not a terminal illness. We got through it though and walked out all shaken and upset wondering how we were going to go break the news to mum.

My parents had been retired for about six years and were travelling around Australia on their boat. They were currently in Hobart but mum had actually flown up four days earlier for a small holiday back in Brisbane. My poor mum opened the door to her three sons, surprised, most likely thinking that we had come to celebrate dinner with her. She was so happy, not even seeing the sombre looks on our faces since it was already dark.

I walked in and had to ask her to sit down because there was something I had to tell her. This is when she cottoned on that something was wrong, looking around to gauge all of our expressions. My mum was also a registered nurse, so as soon as I told her what I discovered that day she broke down in tears, understanding the severity of my diagnosis.

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How the medical system almost failed me again

As mentioned at the end of my last post, I was up to my third sports physician, again having to explain my history and the level of pain I had been living with. She was amazed at how bad my hip felt to move, especially after having the surgery. This sport physician didn’t want to leave anything left unchecked, so she ordered an MRI (with contrast), an X-ray and an ultrasound for a possible hernia and to check my testicle pain. In addition, two pathology tests, one for a standard blood check and the other was to be done if all of the other tests came back negative, which was to check for STD’s.

I walked out laughing, thinking maybe I should get the STD blood check first, since I had had all of the other tests before. I ended up ringing the radiology clinic, hoping to book all of the scans in on the one day. Here I spoke to the receptionist who started to book the MRI with contrast, X-ray and then the ultrasound. By the time we got to the ultrasound however, she asked me what the clinical detail of the ultrasound were to which my answer was, “hernia and testicle”. She then asked if I had a lump, I said no, so she suggested that because I was having an MRI and I did not have a lump that I didn’t need to have the ultrasound. I couldn’t believe it! After two doctors, three physicians, five physios, here she was trying to diagnose me over the phone. I had to be persuasive and told her that the doctor wanted it, so lets just book it in and get it done. She then continued to try and pursued me not to, certain I didn’t need it and suggested that she check with the radiologist first. I started to get frustrated, explaining to her that I didn’t care and that I would rather be safe than sorry, even if I had to pay for it myself. Finally, understanding that she was actually frustrating me she relented and decided to do her job, making the appointment for me.

The day finally arrived, so I drove down the coast, had a surf and then went to get all of the scans over and done with. While checking in with reception they advised me that I couldn’t do all of the scans in one day, which was something to do with medicare and invasive imaging or MRI contrast.  My immediate thoughts raced back to that stupid receptionist who was trying to play doctor and nurse, instead of just doing her job! So all I had done that day was the MRI (contrasts) and the blood tests. I re-booked immediately so the remainder of my tests were done the next day.

The next day, I was finally laying down getting the ultrasound of my lower stomach for my hernia when the sonographer asked me how come I wasn’t getting my testicle scanned as well. I couldn’t believe it! The receptionist had fucked up once again! I explained to him, I still wanted all of the ultrasounds, which included checking for my hernia and scanning my testicles. So he did, and while he was applying cold gel, rubbing a cold instrument over my nuts, I decided to make small talk. I was explaining the difficulty I had gone through just for the simple and necessary check for him to scan my nuts. Like myself, he was genuinely pissed off with the attitude of the receptionist, which made me wonder why it was so hard to begin with.

After he finished scanning my testicles he asked me to put my shorts back on and that he wanted to scan and check my abdomen again. He repeated the scan on my lower stomach and hip, the same spot they previously checked for the hernia before moving upwards. Here he started to scan and move all the way up to my sternum, then asked me to roll over to my left side. He continued to scan around my rib cage for what seemed like a really long time and obviously I’m not a doctor, so I was wondering what this had to do with my abdomen. He eventually asked me to roll onto my right side and continued to scan my left side for about twenty seconds. This is where he gave me some paper towel to wipe the gel off and then he stood up and walked out, saying he would be back shortly.

I sat there for about ten minutes wondering what he found on the right side on my stomach. All I could think was that your liver is on that side and wondered what it could be. What seemed like forever and nervously waiting to find out, he returned and asked me to go out into the waiting room because he needed me to complete a CT scan with contrast. After sitting down, for not even thirty seconds, the radiologist that had done my MRI from the previous day was there putting a canular in my arm.

(The photo below is from this event. I actually sent a Snapchat to a friend trying to be funny, not understanding the seriousness of the situation)

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At this stage, all I thought was that they were doing it quickly because they were trying to fit me in between patients. However, all the scans I had over the years, I never once had to have a contrast CT. They warned me that as the contrast goes in you may feel like you are pissing your pants and you know what, they were right! I really did feel like my pants were wet and had a bit of a chuckle to myself. After the CT scan I went and got my X-ray, which they seem to do fairly quickly and at the time, I didn’t think much of it.

However, now thinking back to the urgency of it all and the way the sonographer’s face reacted when he was scanning my stomach and chest, I probably could have guessed that something was seriously wrong.

Let’s go back four years…

My history of pain

In my early and mid-twenties I was like any other male tradie, I worked six days in a row, would go out for drinks on Saturday night and back it up with a surf or perform surf club patrol on Sunday. I started working shift work at twenty-five, which slowed up Saturday nights out (not that I was bothered by this). I actually found this to be a good excuse to work on my fitness and the closer I got to thirties, nights out drinking were replaced with a glass of red and dinner with friends.

Surf-Trip

Thirty was a big turning point for me. This was the age I was at my physical peak, being fitter than what I was when I was twenty-one. The reason for this is because I ramped up my fitness and watched my diet all in preparation for a surf and mountain bike holiday that I had planned with some work colleagues. This holiday included a seven-day surfing charter in Papua New Guinea. My fitness included doing cardio 5-6 times per week, involving swimming and running five kilometres under twenty minutes, as well as weight and resistance band training.

 

By the time I turned thirty-two (2012) my training began to slow up. I found I could only run two kilometres before my hip flexors and groin started to hurt. I suffered from back pains while swimming and felt the power in my legs getting weaker and weaker. Over the next year I persisted through and rested when I could, always ensuring I did proper stretches. I figured it would just be a matter of time until it all came good and I could get back to setting my fitness goals.

Below photo credit @inwaterwetrustIMG_0452

In 2013, I decided to go and see a physiotherapist who was the original one to diagnose all of my hip and groin pain as referred pain from my back. I saw this physiotherapist almost every two weeks for about a year with varying degrees of pain relief.

Japan-Trip

In January 2014, I went on a snowboard trip to Japan and my back locked up so badly I had to go and see a physiotherapist while I was in Hakuba. After explaining to him my pain history and him seeing the pain I was in, his belief at the time was that it wasn’t originating from my back, it was originating from my hip. Considering I wasn’t making much of an improvement I took this advise back to my physiotherapist in Australia who decided to get an MRI, hoping to prove that I had disc impingement. The results in 2014 of my lower back showed no abnormality… however he was still convinced that it was my back that was the problem, not my hip.

This is when I decided to go see a doctor (general practitioner). I had never really had my own GP, as I never got sick, so I just made an appointment at the local clinic with whoever could fit me in at the time. I explained to the GP about my pain and the sessions I had been having with the two physios and that the pain was in fact, getting worse. In addition, the pain in my groin has started to radiate into my right testicle. The opinions of this doctor was that it was a ‘muscle skeletal problem’ and they referred me to go and see a sports physician.

Knowing I had to keep pursuing the issue I went to see the sports physician, who after hearing my pain history was short on words. He didn’t know what to tell me so he decided to send me in for an ultrasound to check for a hernia, as well as testicular cancer (this is an important one to note). These tests included an X-ray and two different MRI’s. One he called the Minichiello Protocol, after the NRL player Mark Minichiello, as he was the physician for one on the NRL clubs. After performing these tests the sport physician came to the conclusion that the problem was my hip and proceeded to inject cortisone under the use of an ultrasound. The pain after this became worse and two weeks later I found myself back in his office… in pain, suffering more than I had before. However, he had no idea what to do or where to go from here so I left his office under the advise that he would investigate my results and get back to me… which he never did.

After this I tried everything from acupuncture and chiropractor to yoga and pilates. Nothing helped, until one day I decided to get a massage. I booked into a place around the corner and she couldn’t believe how tight my back muscle and hip flexors were. She was also shocked at the size of my hip flexor and by how weak my right glute was. One opinion for why I was in so much pain was because my glute was so weak and due to this all of the other muscles were doing extra work. So off I went to the gym, to build myself a booty. I also went back to her every two to three weeks for massages, hoping to relieve some of my pain. I also started to do a lot of “clams” (Pilates type exercises) and was feeling better than I had in a long time.

By then end of 2015 it was obvious that there was still a problem. I was over the pain that massages, yoga, pilates, physiotherapy, acupunture and gym couldn’t resolve. Therefore, I booked myself in to see a different sports physician and he sent me off to get another MRI. This MRI came back showing a small labrum tear in my right hip… finally an answer (or so I thought)!

March 2016, I had surgery to repair my hip, which was done by keyhole surgery. This surgery was going to have me back surfing in 3 months (so they said). In June, 2016 I went back to the surgeon explaining that, not only could I not surf, I couldn’t even get in my car without lifting my leg with my hands. Instead of investigating this he told me I was being impatient and to keep up with my recovery. So, feeling frustrated I decided to join a new gym which had a exercise physiologist, the perfect person to work with to get my recovery moving.

I started working with Aaron in July, 2016 who noticed the same thing my massage therapist did, I had no arse muscle. Therefore, over the next six months we worked hard on my fitness, while the two physiotherapist at the same company worked on my muscle and pain relief. There was some progress but having to keep up this routine for almost year, it was proving that there was definitely something not right. Especially since I had dedicated myself, my time and my money on multiple sessions a week, taking over ten months to barely recover from an operation which should have only taken three months!

In January, 2017 the physiologist decided to start the year with a strength test to change my program for the next six months. I was impressed with what I achieved weight wise but almost as soon as I hit this goal, I also endured an excruciating pain level, which caused my entire back to lock up and make it almost impossible for me to walk.

The physio and physiologist debated whether I was lifting too much at the gym or if it was something I did after my session. I managed to recover from this which saw me back at the gym two weeks later but I knew all along that I was far from feeling 100%. Considering this was a minor operation, that was only performed in order to fix my pain issues, I knew there was still something underlying that they hadn’t found.

So, I decided to book in with the sports physician who found my labrum tear and ask for another MRI. I wanted to check the repair, in case one of the plugs had pulled out of my hip and to find out why my recovery was making little to no progress. Even though this physician was no longer working at the practice I still booked in to see their recommended physician.

This history is just to highlight the fact that I didn’t just ignore the pain that I had in my back, legs, testicle and hip and at no point did I take pain killers to dull or ignore my pain. Not because I’m a hippy, I’m just against using pain killers to hide any problems. I have always had a firm belief that my body was trying to tell me something and I did what I could to find the cause and work day and night to get my body back to its physical best.

I had to listen to the doctors, physiotherapist, chiropractors, who all had the same belief that my problem was a muscle skeletal issue, even though there was nowhere where I could indicate an exact point of injury. The original pain started when I was thirty-one and I didn’t stop looking for the cause until I was thirty-six years of age, the age of my diagnosis. The only other red herring that is worth mentioning is that my work in 2010 went from being outside climbing ladders and stairs to siting down for a twelve-hour shifts. Sitting is the new smoking they say!

Metastatic Renal Cell Carcinoma

The 1st March, 2017 is a date that I will never forget. On this date I was a 36 year old with a great job, amazing friends and family, fit for my age and like others, planning the rest of my life. This even included steps on how I could retire early. However, on this day, I was diagnosed with stage 4, Metastatic Renal Cell Carcinoma. The actual words the Doctor used was renal cancer, most likely knowing I would have no idea how to process the other words.

I know this is not unusual to be diagnosed with cancer. Hundreds of people each day get this shit news. As the weeks went on though, I realised there were some unique characteristic about my story including how I was diagnosed, why I have it and my immediate and long-term treatment plan. I thought I would make this blog to highlight some of the general information I discovered about the medical system and the process of my treatment. What I quickly realised is that unless you know someone or have been through it before, maybe getting diagnosed at an earlier stage, you’re expected to make some pretty serious life decisions that may not be for the best.

I will be honest, I have never read a blog and I don’t even know who will read this blog. I am of a trade background, so I.T and general literature are not my strong points. So hopefully this blog won’t be boring. I will probably go into a few rants, which should be entertaining, as well as useful.

As mentioned earlier, I was diagnosed on the 1st March, 2017. I plan to write a few posts back-to-back to try and get up everyone up to speed to the present day, so they will become as real time as possible.

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Andy!