On the 23rd December 2004 I was diagnosed with a rare Bone Cancer known as Ewings Sarcoma. At the time I was 25 years old. In the years leading up to my diagnosis my life as I knew it had changed quite considerably. I had gone from living on a dairy farm with the rest of my family to moving into town in 1997, studying towards a Diploma in Business Computing between 1998 and 2000, working at BP from 1999 to 2003 (initially part time but I made the move to full time after completing my studies) and finally moving out of home in 2002.
The years between 2001 and 2004 were certainly challenging years for me. After completing my Diploma I did find it hard to find employment in the IT industry and as a result I initially decided to work at BP full time and later even moved to the graveyard shift so I could be on a higher pay rate which made things easier financially but at a cost as working on my own and overnight was certainly demanding. I eventually made a decision to leave BP at the end of 2003 and work at a local meat works which paid an even greater amount of money, the intentions were to clear all my debts and then further my studies however my first season was much shorter than expected and I ended up returning to BP for the off season.
This is me during the Winter of 2004, I had just recently moved into a new flat and made a new group of friends and everything in my life was looking positive.
This is me with my friends Mike (left) and Matt (right). They were my workmates, flatmates and just good mates.
What caused the cancer?
To this day I still have no idea of what the exact cause was, no doctor has ever been able to give a definite reason as to what may have triggered that tumour to grow on my shoulder. I have heard some people say living on farm could have caused the cancer, I have even heard working in a petrol station could have been the cause. I do know for fact that for 5 years I lived in a house where the power switchboard was on the wall opposite my bedroom. I used to hear the switchboard humming at night and thinking at the time this couldn't be a safe thing. I have also heard that working night shift can cause health issues such as cancer, I first noticed the tumour six months after I began permanently working the grave yard shift at BP. During that time I would often adjust my sleeping patterns so I could be up during daylight during the weekends.
Did I have any symptoms leading up to my diagnosis?
I didn't notice any obvious symptoms apart from the lump on my shoulder which turned out to be the only known tumour inside my body. I remained in reasonably good health in the period leading up to when I was diagnosed. The only symptom I did notice was a rapid drop in weight. In the winter of 2002 my weight was close to 90kg, I moved out of home that year and noticed by the following March my weight had dropped down to 75kg this was the lightest I had been since I was 18 years old. I put the weight loss down to the fact I had moved out of home and wasn't getting the home cooked meals anymore instead my flatmates and I were cooking up a lot of processed convenience meals. By September 2003, when I first noticed the lump, my weight had dropped as low as 65kg. Today my weight is once again above 80kg.
I was at work one night, at the time I was working at BP on the graveyard shift. I hadn't long started work and I finally had a quiet moment so I stood behind the counter and just relaxed. I am not sure what made me touch my shoulder but for some reason I did and I felt this lump and I honestly had no idea what it was. I was able to move the lump around freely and there was only pain if I pushed it up against the bone. I said nothing to anybody for almost a year and only really thought about it after getting out of the shower sometimes if I spotted the lump in the mirror. I wondered if it was anything serious and whether I should say something to someone but I wasn't that concerned I had bigger things to worry about in life so I just put it to the back of my mind. In the next year I left my job at BP and went to work at the Lorneville Freezing Works in Invercargill as a seasonal job, BP then took me back on a part time over the off season.
21 August 2004
Almost a year after I first noticed the lump on my shoulder I finally ended up saying something to someone about this lump. During the evening of this day my friend Aimee and I went around to see Aimee's mother, RaeAnne. While I was visiting, Aimee's 4 year old brother, Beni, thought it would be fun to stand on my shoulders. His weight applied pressure on the lump and pressed the lump against the bone and this felt painful I put Beni down and told Aimee and RaeAnne that it was too painful to have him stand on my shoulder because there is a lump there. I can remember when I first mentioned the lump I did so in a way that I didn't consider it to be a big deal because at this stage I didn't see this lump as a big deal. Straight away RaeAnne wanted to see the lump and everyone was wondering what the lump could be, Aimee and RaeAnne were telling me to get to the doctor as soon as possible. I had a think and said that if I go to a doctor now the doctor would probably hold me in hospital and I won't be able to go on our trip to Christchurch that I really wanted to go on in two week's time. In the end I told them I would go to the doctor when we get back from Christchurch. RaeAnne told me she would be pestering me if I didn't go to the doctor as soon as we got back.
14 September 2004
We arrived home very late from our trip to Christchurch the night before so once I was up today I made a call to the doctor and asked to make an appointment, the earliest he could get me in was the following day, I then sent RaeAnne a text so she knew I had an appointment to see the doctor.
15 September 2004
I went to see my GP, Doctor Rillstone. First of all I started telling him how for the past few weeks I had a real bad cough and what seemed to be an ongoing flu. I then told him that I have a lump on my shoulder and asked; would he have any idea what it might be?
After the doctor removed my top he seemed quite concerned and gave the lump a move around and then made a decision for me to have an appointment with the health lab for a biopsy using a fine needle aspiration. Following the appointment I returned home from the doctor, at the time I was living with my parents on a temporary basis since we had problems in my flat and all had to move out. Matt and Aimee came round to visit and Aimee asked me that day if I had told my parents yet about the lump, at this stage I hadn't mentioned anything to my parents. My mum thought my appointment was to deal with my recent cough and flu.
I told both mum and dad I have a lump on my shoulder and that it had been there for nearly a year. I told them I wasn't too concerned and that is why I hadn't said anything; I could see real worry on their faces and they were just wondering what it could be.
To be honest at this stage I still wasn't concerned about this lump and was more interested in the fact that I was going out on a date tonight with a girl I had just met online. The date went rather well and we both started going out as of this day.
16 September 2004
During the day I had a needle biopsy which involved jabbing a needle into the lump and removing blood. The blood would then be tested and hopefully return a result giving doctors an indicator as to what we were dealing with. The doctor who did the biopsy looked at the lump and started moving it around and commented on how the lump was moveable and the doctor made the comment that it does not appear to be attached to the bone, I guess that is some relief. I was actually working during the day and my boss was kind enough to allow me to leave work briefly so I could have the blood test done. On return to work I told my boss how my appointment was for a biopsy to find out what this lump is that had been on my shoulder for the past year. My boss just asked me why I didn't go see the doctor sooner. Once again I just said I wasn't too concerned about it.
23 September 2004
A week after seeing my GP I received a phone call from my GP advising that they have no idea what the lump could be but arrangements have been made to have the lump removed within the next couple of weeks. The plan is to remove lump and once removed the doctors can determine what we are dealing with. I was told I would only need to take one day off work to have the surgery. I thought this seemed a good enough way of doing things at least then if the lump is out of me it can not cause any further harm and if it comes up as nothing serious then I should have nothing more to worry about as the lump would already be gone.
8 October 2004
Two weeks had passed and I had heard nothing from the doctor about surgery and at this stage my mother rang me to tell me that she had been in contact with both Southland Hospital and my GP to find out why we hadn't heard about the surgery. A hospital staff member told my mum that no non-urgent surgeries would take place for the next month because Southland Hospital was in the process of shifting to their new Hospital. I still wasn't too concerned as this lump had been there for so long and the lump didn't look that much larger from when I first noticed it so my thoughts were that a month wouldn't make much difference although I did want all this over before December when my next season at the freezing works started as I didn't want to miss work and the money I make during the season. As I was now a seasonal worker I didn't have any sick days owing and couldn't afford to have any time off work. My mother had different thoughts and was investigating the possibility of having my surgery through one of the private hospitals.
19 October 2004
After still not hearing anything from the hospital my mother was getting quite concerned. During this time it appears the lump had definitely grown and it now seemed that the lump was tight against the bone and my skin. My mother rang the doctor and then me at work and told me I had an appointment at 3pm to see the doctor which meant finishing early. I told my doctor the lump had grown and asked when the surgery would be, after examination the doctor started to make some calls and told me I should have an appointment with the hospital within the next week.
29 October 2004
I finally attended my appointment to see a specialist at Southland Hospital. I was examined by Doctor Regeeb. Almost instantly the doctor reckoned the lump was attached to the bone, I told him this can't be right since the doctor who examined the lump a month ago, when I had the needle biopsy, told me it could be moved freely. He said it would be too dangerous for him to operate and that he would order a CT scan immediately to get better idea of what we were dealing with.
15 November 2004
I finally had the CT scan at Southland Hospital. What was supposed to just take a few minutes, ended up taking 3 hours because the CT scanner broke down. Radiography staff at Southland Hospital had to call Auckland for instructions on how to fix the problem. While lying on the CT scanner I kept thinking the worst and how the results would reveal something really serious such as that I may only have so long to live, finally some concerns were starting to arise. Afterwards I was supposed to have a consultation with one of the doctors. The consultation never took place.
24 November 2004
Almost 10 days had passed since the CT scan and my mother was starting to get concerned as to why there had been no result. Personally I was still hung up in everything else that was going on in my life such as dealing with breaking up with Casey, whom I had started seeing just weeks earlier, this was of greater concern than the mystery lump on my shoulder. My mother called the hospital and wanted some answers about the CT scan. The matter had now been taken over by Doctor Fosbender but it turned out he wouldn't be able to see me for two weeks because he was supposed to be going on holiday the next day. After much persuasion from my mother we managed to get an appointment at Doctor Fosbender's private clinic at Southern Cross Hospital in Invercargill. My mother actually picked up the CT scans from Southland Hospital and delivered them to Doctor Fosbender, the scans had been written to a CD-ROM. The doctor looked at the CT scan result and told myself and my parents there appeared to be a lot of fluid build-up like a cyst and that the lump appeared to be benign but he wasn't sure, this really put my mind at ease for now. He told us he didn't want any "clown" removing this lump and worse case scenario would be surgery at Middlemore Hospital in Auckland otherwise if it was nothing serious he would perform the surgery himself. To be certain the lump was not attached he ordered an MRI scan and told us that if I didn't get an MRI in a week to pester the hospital until the hospital gave me an MRI. Doctor Fosbender also told us he would like to do another biopsy under general anaesthetic and remove a sample from the lump for testing.
7 December 2004
I finally had the MRI scan at Southland Hospital the reason why it took more than a week was because the hospital told us the scanner was out of action so they could equip the MRI to handle babies, the MRI scanner was a new addition to the new Southland Hospital. The MRI scanner was very loud so I was given headphones which played music of my choice while I was having the scan. I think having music play during the scan helped take my mind off the fact that I was in a small enclosed space and this made the time pass faster.
8 December 2004
I received a call early in the morning from the freezing works telling me that I could return to work in a week and the same day I gave BP my notice again. At this point I just wanted the surgery to be left until after the New Year so I could concentrate on getting back to work and having a happy Christmas and New Year.
12 December 2004
Today was my last day at BP I noticed a real pain in my shoulder after I opened the shop and dragged out all the trolleys onto the forecourt. It really concerned me and I knew that soon I would have to be operated on.
14 December 2004
I had my induction in the morning at the freezing works and all went well I was getting quite excited about going back to work as this was to be my second season and it was like now I was no longer a "newbie" to the job there would have been hundreds of new people start after me. After arriving home I took it easy at my flat over the rest of the morning my mum then turned up and asked where I had been, I told her I had just started work. Mum told me the hospital had been in contact and they would perform the biopsy this week. My first thought was "not now" it had been 3 months of waiting from when I first saw my GP and by now I wanted to get back to work and settled there again. A letter arrived at lunch time from the hospital confirming what mum had told me, I was to go into hospital the following morning to speak to the doctors before the biopsy which would be in two days.
15 December 2004
I went into hospital and was admitted that day but allowed to go home and even to work that night. I spoke to Doctor Fosbender and the house surgeon and was told if the lump could be removed easily or if the lump looked to be nothing serious the surgery would be done then and there, otherwise a small chunk would be removed for further analysis. I had my first night back at work and showed my boss the letter from the hospital, I was allowed to have the remainder of the week off work.
16 December 2004
Mum took me to the hospital early in the morning and I ended up being left in the single room to sleep all morning since I finished work at 2am the night before. The comment from the nurse who examined me that morning was that I looked to be healthy young man and she made a comment on my hospital file which was then just a few sheets of paper, this would change very quickly over the next few months. At around 11am I was taken to the surgery to have my biopsy. Doctor Fosbender arrived and he had a quick talk with me and told me it wouldn't take too long as he was only going to open up the area and remove a small chunk of the lump. I was then taken into theatre and had the anaesthetic injected into me and a gas mask placed on my face, before I knew it I was asleep. I woke up from the surgery at around 2 in the afternoon and was taken back to the ward where I could rest I was now in a shared room and I just wanted to sleep but that wasn't possible with everyone in the room talking. The lump was still there and all that had been done was a biopsy. Matt and Aimee came to visit and brought me a toy crocodile to sit on my bedside this toy ended up on my bedside during all my treatments. During the afternoon, a CT scan was taken of my full body I had no idea why at the time but this was done to ensure nothing had spread to any other parts of my body.
I stayed at the hospital overnight and was woken up every hour to have my blood pressure, pulse and temperature taken so I did not get much sleep that night.
17 December 2004
I was awoken at 7am after having breakfast placed in front of me and the curtains pulled I just wanted to sleep. I was taken down to the x-ray department at 8am to have radioactive dye injected into me for a bone scan that was taken later that afternoon. While waiting for the bone scan Doctor Fosbender came and saw me and had a talk. He told me,
"We are treating this as the worst possible outcome and that results had been sent to Middlemore and Christchurch Hospital."
I asked when I would be ok to return to work and he told me not to go back on Monday even after rest over the weekend. This surprised me as all I had was a biopsy and I remember being told that I would be able to go back to work the following day after my surgery, when I eventually get it. After the full body bone scan I was discharged and I stayed the night at my parents.
21 December 2004
I rang Doctor Fosbender and asked if I was fine to go back to work and his response was that I was not go back to work and he wouldn't tell me when I was allowed to. I explained that I needed to get back to work as soon as possible especially given that I felt fit and fine and couldn't afford to have much more time off given that I had no sick days available since this was the start of my work season. I was told to apply for a sickness benefit instead. I then asked for a medical certificate that I could give to my boss explaining why I cannot work. Doctor Fosbender then gave me an appointment which would take place two days later.
Next Page: The Diagnosis
|Part 1: Being Diagnosed With Cancer||Life Before Cancer • The Diagnosis • Treatment Begins|
|Part 2: Induction Treatment||Chemotherapy Cycle: 1 • 2 • 3 • 4 • 5 • 6|
|Part 3: Surgery||The Surgery|
|Part 4: Consolidation Treatment||Chemotherapy Cycle: 7 • 8 • 9 • 10 • 11 • 12 • 13 • 14|
|Part 5: Life After Cancer||Removal of the Hickman Line • 2006 • 2007 - 2010 • 2011 - 2016|