Cancer is Life

Cancer is Life

Today, 9th of May, is my mothers birthday. She has been gone now for almost three years; taken by a degenerative lung disorder. I think about my mother most days, as it’s difficult not to think about the people that have had the greatest impact on your life, especially when they are no longer here to talk to.

My mum and I used to joke about mortality, death and such things while watching TV shows together. She was a nurse (including years in hospice) for most of her life, so these things were not foreign to her. These conversations were not morbid or somehow showing a deficit in our obviously damaged psych – this was just our way of dealing with our respective health issues, past and present. Hers, a lack of oxygen over the previous few years, mine stomach cancer surgery and chemotherapy in 1995.

Mum and I laughed so hard at some of the TV programs, I thought mum would cough herself over the edge. Then we would laugh at each other. Strange what people find funny.

Some say that our current position in the universe is a result of all the decisions we have made leading up to this point. I believe this is true up to a point – as some things are not a result of our own decisions – merely just luck, or bad luck, as the case may be. These days, if I answer a question with a shoulder shrug, it’s a way of acknowledging the way life works in respect to luck.

Life is conditional on death – a beginning and end..

Death must follow life, as surely as sunrise and sunset – it is inevitable and mostly extendable by various means. Extendable by choices we make in life, such as healthy living, not smoking, eating well, exercise etc. Or; otherwise extendable by intervention like surgery or drugs. I never said I followed said advice on healthy living :-).

Many people I have met through life immediately try to pinpoint causation: a reason for things occurring; something (or someone) to blame. Going back to luck: sometimes these things just happen. 

Things like cancer. Entering into a philosophical debate regarding the intricacies of cancer causation, for me, is a just a waste of energy. Energy that could be put to better use elsewhere. This is one thing that has changed in me, but more on that later.

Writing this piece has been a long time in the making. 23 years, three months and four days to be exact. Today I am one month from being 55 years old – meaning that cancer has affected my life for more than half of my time on this planet.

It’s an evolution of self to undertake the task of writing about your own life. I have undertaken this project so that others may find some nugget of enlightenment, or maybe some vicarious involvement, sadness, empathy or maybe even a laugh at the ridiculousness of it all. Please keep sympathy for your own amusement, as mine was removed during surgery. It only took me a few days to work my way through internally accepting my diagnosis, although I have now been through the circular path of acceptance many times. 

This is why the classic closed loop is not quite right in my view – where a very neatly placed set of emotional points appear on a circle (denial, anger, bargaining, depression and acceptance), or some variation on this. The problem with this ideal closed system is the complexity of the human mind. Like many things in the world, it seems this process doesn’t completely fit me.

The initial cancer diagnosis was received in a convoluted way – where it was not direct from a doctor as would usually be the case. My sister rang me on the 26th of December and said I had to see a doctor and get my results sent to see what was going on. “My results” means the lab results from an endoscopy I had just before leaving my previous hometown. My GP at the time wanted to do a few tests “just to be sure” it wasn’t something else, you know, seeing as I had these symptoms for a couple of years and all. Wow, didn’t that turn out to be a lesson to learn. Oh and merry Christmas BTW.

My then young pregnant fiancé and I had only just moved from Narrabri in outback NSW, to the coast at Port Macquarie for a job I got at a well known boat building place.

We had very few possessions, other than some clothes and our four month old kitten Jeti, oh and a 1992 Nissan Pulsar. I had been at the boat place for less than two weeks.

It is difficult putting this into words – even now after all this time – how the initial stage of my cancer diagnosis progressed. It was like a combination of a Shakespearean drama on a cheap TV soap opera budget. So many things were going on within two weeks of me receiving the news from my sister “to go and see a doctor”. Our living situation right then was tenuous at best – staying in a rented caravan on a weekly basis, with a young cat, a car, and nothing much else. Cats weren’t permitted in the park apparently.

I took a trip into the boat building place to let them know I wasn’t coming back after that day – which I was hoping wasn’t going to mean REALLY not coming back in general. Projection much? Jobs were nothing back then in 1995, where I had many jobs in boat work in the previous few years, so coming and going wasn’t the issue. The real issue with this one, was the reason I left – I won’t be coming back, because, well, I’m probably going to die from cancer. I was 31 years old.

My final employer visit was on the way to see the local GP doctor, whom had been given the heads up by the doctor in Narrabri (I only found this out later). The doc was brilliant. I walked into the surgery for the first time, and straight into the rooms. I actually did the usual paperwork after the appointment, which was the only time that ever happened. I got a referral to a local Hematologist along with the usual x-rays and CT scans, blood tests and bone marrow aspirations. All these new terms and words I’m so familiar with now, was at the time, just background noise, as though I was watching someone else going through this from a distance – like in a dream.

This was within a week after getting news to see a doctor. An entire lifetime of hopes and dreams, future plans with my soon to be wife, a new son due in February 1996 (our time line is currently in the beginning of January 1996).

I started feeling unwell with bad flu symptoms about this time. The beginnings of pneumonia so the doc said.

The next major step was to see the hematologist.

Blood cancer see – Non Hodgkins Lymphoma – this is why I needed to see this guy. The first visit was very long, about two hours from memory. I had done some scans and x-rays by this time, although it was still a very short amount of time since D-day (diagnosis day). The usual waiting periods simply didn’t apply to me at all it seemed; maybe this was serious. This first appointment was actually quite entertaining, although I think I was the only one thinking this was at least partly funny.

Bone marrow aspiration.

Now there’s a fun activity for people bored and needing something to do. For some reason, (at the time) I had to have one right now. It went something like this:

  • Doc explains what bone marrow aspiration is, and how it’s done. This serious look on his face dampened my naive enthusiasm somewhat.
  • I didn’t have to get undressed and wear the stupid, I mean utterly ridiculous, hospital gown type thing. I think I got some leeway, going by all the “world is coming to an end” expressions I could see. So I just ripped off the jeans and left my T-shirt on. Special or what?
  • Get up onto the treatment chaise longue (my words), facing the wall. I saw that this was for two reasons: one so I couldn’t see the piece of pipe the doc mistook for a needle, and the other to brace myself against the wall.
  • Now for the usual local anesthetic. Due to hitting the bone in my left hip, I had to ask if the doc had considered being a dentist. I think he may have laughed. I have a very high pain tolerance, which was being tested now. Doc said to stop distracting him. Every person handles highly stressful situations in their own way – I use humour.
  •  Now that half my body was numb, it was time for the sharpened pipe. The plumber in the doc was coming through now. I stayed quiet with the thought
  • I forget what size needle the doc used for the aspiration, but do remember he said they were used for cardiac injections. I never thought the heart was so far away from the outside of your body, looking at the length of the needle.
  • The process of aspiration is to push this giant needle through your skin, muscle and fat layers, then make a hole in your bone somewhere, then withdraw the needle, along with the bone inside the needle. Yes, that’s really how it works – this “procedure” is not for the faint of heart. I’m not a bleeder, having generally good health otherwise – other than the usual cancer that is – but there was some blood letting that day.
  • Oh, and the first needle was bent as doc / dentist / plumber didn’t quite get the needle straight in the hole. (I’m going slightly white and sweaty just thinking about this). That is – he bent the needle, then withdrew the said bent needle through the hole in my hip. Does this sound bad?
  • Now enter the needle he obtained from the local boilermakers, where they specialise in industrial pipework. He smiled, but in a “holy shit man, I’ve never seen that happen before, sorry but I have to now use this huge shiny metal pipe” kind of smile.
  • So now the placement of the wall. The new needle was so large; doc nee boilermaker was now using two hands on the 50ml (not a typo) syringe to get it to go through my hipbone. Newton’s laws and all, I put both hands on the wall to stop being pushed over the bed and onto the floor. I am absolutely positive the doc was actually sweating.
  • So now he had the bone sample, a good workout and two cups of my blood, the doc was slated for a cup of tea and a lay down, just like I was. I hope he got that welding ticket he was due.

The tests came back clear, just to add insult to injury. I could have at least had a few dodgy looking lymphocytes for my trouble. So, this meant, in short, that the cancer I had was localised within the wall of my stomach lining. A very unusual thing indeed, so said every doctor I met from then on.

We had now moved to a granny flat just out of town (Wauchope),

where the property owners were generously helping us out while we worked a plan for the surgery and new baby in the next few months. My health very quickly declined into full-blown pneumonia. My GP said it was due to my immune system being reduced to almost nothing while fighting the cancer. I was extremely unwell, and not a single scalpel or chemo infusion had touched me at this point.

Enter 4 different antibiotics to smash the illness I had, so the illness I otherwise had, could be treated. Remember the discussion about luck?

So while I was taking turns vomiting with my very pregnant fiancé, we were trying to work out exactly what we were going to do. Our options were limited by immediate extreme financial hardship, to staying where we were, me getting surgery / chemo and our new baby being delivered here. 

Our other option was to get some kind of financial assistance and get back to Western Australia, where our families were.

We went with the latter, as we would be with family. We really didn’t want to impose any further on the huge generosity of the people in Wauchope.

We received some financial help from family and booked airfares back to Perth. My fiancé had to get a doctors certificate to fly, as she was then seven months pregnant. We were to fly out from a local airport to Sydney, then Perth. All was worked out now, as we had somewhere to be, a plan and some assistance at the other end.

 The day before we were to drive to the airport, while I was in bed extremely sick, some guys turn up with a truck and repossess our car. We had no money to give them. The homeowners wife had to hold her husband back from knocking out the driver, so I heard later. Lucky they found the car then eh? Lucky.

Small change of plan. We wouldn’t be able to make the flights now, as we had no plan and no money to create one. The homeowners immediately offered to drive us to the airport. I don’t really remember much about this, as I was so unwell, but am sure he also handed us some cash for the trip. So we got a lift the next morning at about 5am. Got our flights and got to Perth.

We left our kitten Jeti with them, as we weren’t able to make arrangements for her to come with us.

Fast forward to the 5th of February 1996 – S Day (surgery day).

I had recovered enough so that now I could get some surgery I could recover from. Weird world we live in. My parents were closely involved, along with my fiancé of course. Most of the rest of the family stayed away. 

The head of the department, which increased my then lack of certainty, was doing the surgery. He was a pompous dick though – seemingly too important for small talk with me. I was only a patient. He did draw a picture of the GI system and how they intended to approach the tumor. My mum kept the drawing, as she was standing right there, listening. I now have it.

I remember taking two large green pills in prep for the surgery at about 7am on the 5th of February. Mogadon? I was the only name on the list for that operating theater for the day. I rolled down the long corridor, noticing the Hitchcock like flouro lights on the way, making for a slightly eccentric trip shot in black and white film. 

Arriving at the theater, I wasn’t the slightest bit anesthetized, as was the intention of the equine sized pills. I was annoyed at not getting a few sugar cubes as well. I stated my name, date of birth and what I was doing there at least five times. I was beginning to wonder if these people were organised at all, seeing they didn’t know why I was there. Of course, I knew it was protocol, but it made for some fun.

The anesthetist took one look at me and said “did they give you some pills this morning?” “Sure, what were they for?” was my very clear response. “Ok, hmm, you look very awake”, then seemed to rethink some mathematical formula in his head. He was a nice guy. I only remember counting back from 100. I got to about 96. My arms hurt from the anesthetic for a month afterwards.

I was later told I was in surgery until 2pm, six straight hours of surgery I think. I remember small bits in recovery, but only as third person, nothing from my perspective. I can’t describe it in first person, as I just didn’t observe it. Is there such a thing as first person in the omniscient third person? God mode for you gamers.

Ouch! I hurt. Pain is what I remember from any first person memories that actually work. Pain and being extremely hot, I was burning up. The aircon was so cold it would keep a chook frozen, but I was at 39C for two days or so. I also had three or four units of blood. There were a lot of people around me doing stuff. I was on full time watch I think, as I could see a nurse at all times in those first few days.

The pain I think was so bad, it took my brain a long time to fully process it all – if it could tell me, my body would have said “mate, you really don’t want to know the real story here, just lay there and shut up.”

My fiancé (now eight months pregnant) came in every day, driving our ancient Hillman Hunter Royale on the 40C+ days we had then. The car broke down one day on the freeway – the radiator was gone. I still don’t know how they fixed it, but I do know the cancer foundation paid for it. 

My parents also came in most days, along with a few friends and some family came too. I wasn’t very good company, having had my guts redesigned from scratch, probably hammered on an anvil, cut with a rusty old saw, who knows? After all, the first hematologist was a closet plumber. Pain was the only word I needed, oh and Morphine. Two words. I quickly discovered I had bad reactions to Morphine, so got changed to Pethidine.

Interesting places hospitals. Full of sick and dying people, a very positive influence – NOT. Once I was up and walking after about four days, I went annoying other patients. The physio’s said I had to get out of bed. 

Just next door, there was an old guy. I never knew his name. He was seemingly well off, as he collected Jaguar cars. Being a car buff, I spent a couple of hours at 2 or 3 AM talking cars with this guy. He had terminal liver cancer. I think he knew his time was up and it showed with the way he spoke. We were just two guys talking shit, just as it should be. He died later that night when I was asleep. I didn’t feel sadness, because he was ready for his journey. It was a shame we didn’t finish that conversation about D Types.

The day of my release was another one to remember. My mum, having been a nurse for a very long time, had serious concerns– that my release was far too early. I was in for only nine days I think, and had all my (150) staples removed at one time. My mum said at the time to the nurse that it was a bad idea. My mum was right, as usual.

I did get a (Woolworths shopping trolley like) wheel chair to the curb where my parents’ car was waiting to pick me up. Clatter clatter, Christ on a Bike, doesn’t the hospital have any oil for this poor wheelchair? So, get into the car. Standing up was a very large challenge in itself, not just being discharged about a month too early. Now I had to work out how to get into the car, without literally splitting in half. My wound from surgery essentially going all the way from one side under my rib cage to the other.

So, get back to my parents’ place in the southern suburbs. Now have to get out of the car and into the house. Of course, the house has three steps at the front door, being built in the 1950’s, it wasn’t wheelchair approved. I get as far as the armchair in the front lounge, sit down, and don’t move for a couple of hours. So far, I have walked about 15m (45ft) all up and am completely exhausted. I nod off while watching the TV, having had some very powerful drugs.

Waking later, I feel kinda weird, like I’m all mushy in the middle. For a split second, I didn’t understand what was going on, as happened often after this point as well. My dressing was covering most of my torso, but had come slightly loose. I peered into the top and could see my wound had opened all the way across, meaning, I was actually going to split in half. I wasn’t terrified, as I was too tired to really think much about it. Other people did the thinking for me.

Back in the car with my mum. We left the others at home I think, as we knew we would be at the hospital for a long time. I was very much hoping to be readmitted, but alas we were in the ER for a while, waiting for one of the guys involved with the original surgery to come and look. Of course, they were doing some boring thing like surgery on someone else, saving their life, or some excuse like that.

The surgeon was a registrar (the dick surgeon’s apprentice). He was a very nice young guy, although only about two years younger than me at the time. I never saw him before, although he did most of the work on me. So, as I was too unwell to undergo another general anesthetic, I was just stitched up under local anesthetic. He could not get how I could be joking around during this stuff. Better than the alternative I said.

This was the beginning of my change of attitude in life.

I got home very late, must have been early AM I think. I slept in a single bed set up in the lounge room, in place of the family sized dining table that usually occupied the space. Mum became my defacto nurse, my fiancé the nursing assistant, although my mum was still working as a nurse at the time. I could get to the toilet myself, which was good in the early days. Very major surgery on your GI system isn’t good for bowel movements. Let’s just agree that people wouldn’t volunteer for this if it were an option.

Our first son was born on 22nd February 1996 in the early afternoon. It was such a great moment for me, having made this one of my objectives to achieve in staying alive. Its a great incentive to hold your newborn child while you have 200 stitches in your body, from surgery you had only 50% chance of surviving, let along the cancer itself. It was a paradox in many ways – the extreme ends of the human condition – new life, perfectly formed, while the holder was severely disabled, with a chance of not surviving to see his sons first birthday. Cancer can take a day off today.

Recovery was slow. I had an infection from the second hospital visit to get re-stitched. This persisted in my wound until June 1996 – four months. Meanwhile, the doctors are waiting for my wound to heal so they could administer even more treatment that I had to recover from. Lucky me. The minute you are well, we are going to make you very unwell – sure why not. 

I remember the hematologist at Royal Perth Hospital saying “everyone reacts differently to chemotherapy, sometimes it doesn’t really affect them at all”. He was lying through the hole in his face – he knew it, I knew it, he knew that I knew that he knew. I called it bullshit, he agreed. We got along very well. Dr. baker, the most professional and nicest doctor I ever met.

So my body and I arrive at June 1996 with barely a whimper, and rattling from all the pills I was taking. I’m unwell, in pain, and extremely pissed off at the world (not at people at this point, this comes later). I was in a jail of sorts – where there is no escape other than jumping off the wall or running through machine gun fire (metaphorically speaking). Now it’s time for the next stage of pain and suffering.

Day one of chemo.

Find the new department, find the desk, state my name for the 2.5 millionth time. After walking all the way from the car park, I was already feeling like crap, and didn’t look forward to dangerous chemicals being put in my veins. I had no idea what to expect, even though the doc and I had the conversation. 

Laying on the chaise, this time, in a nice 1950’s light brown vinyl, in a K-Mart-esque fashion statement. With her protective gear, clear facemask, long apron, the nurse looked like a truck radiator repairer more so than a highly trained nurse. Showed how hazardous the chemotherapy drugs are.

I was to get three to six doses of this stuff, once per month, with very close scrutiny by blood tests in between to keep an eye on blood cell count etc. This was in effect, a process that wasn’t necessary by what could be seen on scans, but to treat potential escapee cancer cells from surgery. Never mind your hair, nails, teeth, mucous membranes and skin have to die too. I still have the needle scars.

Meanwhile, while all this horrendous stuff is going on inside my body, government institutions were gathering their forces to assault me with their stupid questions, discrimination, sexism, and general hate for anyone that doesn’t fit their system exactly. Originally the Commonwealth Employment Service, then later Centrelink, these people and their system have seriously challenged my self-control for not strangling people. 

I have many examples, but can pick some of the better ones to show the shining lights that work at these places: one guy in Centrelink in 1998, said to me “you look ok to me, why don’t you get a job”. (He got a warning letter from the minister) Another says, “you have to come in for an appointment, or we’ll take your payment off you”. I replied “I’m getting chemotherapy today, I can’t make your stupid appointment.” My payment wasn’t affected. I have discovered that simply telling people to f*ck off doesn’t work as well as quoting legislation.

I was both too young and too old at the same time, to fit the system of help. I had no assistance at all from the agencies put in place to help people in need. I started to make noise. I started to read. I learned what my rights were, what these people can and can’t do. I started to fight back against the system designed to punish me for getting sick. I started to use the power I was given by suffering through all this shit. I have worked only half of the last 23, mostly caused by residual illness from surgery and chemotherapy.

I liked learning and researching things, so I went to university.

Fast forward to today.

I have five children, and one grandchild to my eldest son. I have a new fiancé of six years, and her family of five and also one grandchild.

I am tired every day. Some days are so bad I can’t really do anything. I like walking, but have to take some time to lay down when I get home to recover. This is why working in normal jobs is so difficult, as most people don’t seem to understand. People don’t see the suffering, so things must be great right? Right?

I now have a postgraduate degree and three diplomas, one of which is Law. Paid for in blood, sweat and other people’s tears. I have volunteered for many hours helping people, particularly the unemployed and disabled, and also an advocate and adviser on contract law and social security issues.

Cancer has redefined who I am now, where I get my strength from when shit goes downhill. Without the adversity, I would just be another face in the crowd.

Rod Shehan at Royal National Park, West of Cronulla
Spread the love

Leave a Reply

Your email address will not be published.