Hiding the alien (a 10 minute read)

Who am I? I work for the South Australian Government in the field of Disability, in the Aboriginal Inclusion Unit. I love photography – I had my first exhibition during SALA Festival (South Australian Living Artists) in 2006. I also enjoy other forms of art and writing. I am just waiting for a space in my schedule to work on a sculptural instillation of bush inspired hats – working title ‘bush bitch’. I have three children aged fifteen, eleven and six. I have been happily married to my husband Andrew since April 2004.

I was diagnosed with cancer just before Christmas 2005. The first part of this journey was very straight forward. I found a lump in my testicle. I went to the doctor, had an ultrasound immediately, got the results back very quickly. I was naïve to begin with, I thought I’d just have it removed in something akin to a dentist chair, and in just enough time to pour over a 1998 Who magazine, I would hear a snip, I’d take off the hairdresser gown as he brushed me down and I would say thanks as I skipped out the door. But it was not to be, the treatment and the procedure to remove the cancer was extremely invasive.

I had Andrew come with me to every appointment. I wanted him there, so he knew first hand what was going on, it was best for us because together we could talk about it and develop our game plan.

The cancer had grown 4mm in one week. I had one day to prepare for the procedure, it was that quick. It was totally surreal, especially at a work Christmas lunch, when the CEO gave me a big hug and included my situation in his Christmas speech; it was out there for all to hear. Everyone knew I had testicular cancer. And I remember not being afraid of it, I was more thinking, this is going to be a really different adventure.

To remove the testicle they went through groin muscle, they couldn’t afford to let any cancer cells leak into my system. Thankfully there were no slips. The biopsy showed I had two cancers. A very rare kind of testicular cancer (everyone I knew said I was just showing off) – plus a very typical testicular cancer bang smack in the middle of the rare cancer.

They left the other testicle, and I had to wait for the wound to heal before beginning any treatment. “Think of this as going on a journey,” the doctor said. I didn’t really know what he meant by that. After specialist visits we found unfortunately a systemic cancer meant a trip to the friendly neighbourhood oncologist to discuss treatment. I think Andrew and I were both in shock at that point. It was the worst possible treatment outcome we could have anticipated. All our friends had previously said, “…at least you will only have radio, you’re lucky it isn’t chemo…”

I freaked out almost to the point of an out-of-body experience. I rang the SA Cancer Council who were most helpful. I felt I needed to see someone “right now” and luckily I got into see a counsellor straight away. The counsellor at the cancer council described the physical symptoms of the therapy: What hit me hardest was, losing eyebrows and eyelashes, it seemed so final. I was going to look like an alien!

When I got home I immediately rang Andrew, I thought I was ok but I wasn’t, Andrew came home straight away. We just held each other in the driveway and sobbed hard for ten minutes.

Both our work managers were very supportive through our journey, they had an incredible impact on the way we coped through this.

I had two cycles of chemotherapy which made me extremely sick. I had treatment for two weeks in three. I did lose all my hair – I felt like an alien and I looked it. People stare too, because aliens are strange creatures from other planets.

We didn’t hide my cancer from our kids but we didn’t want it to be overwhelming for them either. We joked about it when they were around. We even named the removed testicle – well, the kids did – Terrence Ashley, and the one left behind is Philip Mary Kate: after Terrence and Philip from South Park and the Olsen twins! Don’t ask!

We used humour a lot to cope with what was going on and refused to allow anyone to be negative while they were around us. We had to be strong and focused and needed that confidence from our friends too.

The Urologist and Oncologist were at the top of their fields and were both very thorough with their work and respectful of Andrew and my relationship. But the main issue we found difficult with the specialist, was that they hinted at things, they didn’t tell us everything we could expect. Others who have also been through this have agreed. It’s almost as if the specialists don’t want to ‘pre-empt things’, in case they give you expectations about symptoms or side-effects and create problems. When things did go pear shaped, we never knew if the problem was something to just endure or that we could ask for help for.

At one point I had blood poisoning, my body blew up with infections: my earrings became embedded and disappeared inside my earlobes, we had to push pliers into each side of the flesh on my earlobes to find, grab hold of and pull the studs out, very painful, indeedy my lordy yes. I also had a nipple ring cut out too- ouch, I had ingrown toe nails that became infected, I ended up being hospitalised and in incredible pain, I had blurred vision from the large amount of morphine which wasn’t helping the problem either. One of the specialists even made an off the cuff remark about us ‘gays’ being party boys and inferred that I was using the drug not as it was intended. I took him to task and told him that I seriously doubt he would think the same of a patient in the same situation who happened to be a much older ‘female’ with English as a second language, yet he felt comfortable in saying it to me. I hated being profiled by him when he purported he was so very comfortable with his many gay friends. Needless to say, he found that hard to hear, but I wanted him to understand that people needing something from the medical system are at the mercy of what the doctors see and their preconceived notions of what people’s lives are like.

The nurses were great, but the doctors could be too medico-centric, and didn’t give us enough information. No treatment options were offered to me and I wasn’t offered the opportunity of having both testicles removed: there’s a 40 something% chance that cancer will be found in the testicle that wasn’t removed. I wouldn’t have to fear that if I had had both testicles removed as they do for women who have a double mastectomy as a preventative measure. If you do find yourself in a similar situation my biggest tip is to make friends with the nurses, then you get to know a lot more. At one point early in the piece, I asked a doctor what vitamins I could take as supplements, he dismissed me saying that if there were any weaknesses picked up in the blood tests they would just give me a shot of whatever was needed, not very empowering in itself.

In 2006 Andrew and I both ran on pure adrenalin – we just didn’t know it. We had previously planned and paid for a trip to Samoa which unfortunately fell at a time when we had decided to sell our home and move to the (Adelaide) Hills. We had trouble selling the house for the price we needed, this added much to the pressure we had been subjected to and created for ourselves.

Once treatment; the trip and moving were over, my mind and body caved in and I just crashed. I lay on the couch, unable to turn the TV on or look out the window, I was as close to suicide that I’ve ever felt. I was immobilized when Andrew wasn’t here, when he was there, he couldn’t understand what was going on. Unbeknownst to us, I was coping with what I know now is commonly experienced post cancer post treatment ‘survivorship’ issues.

Throughout this journey I kept a daily journal and included photos of myself as the treatment progressed, my feelings, my dreams, my expectations about life and people. There have been some casualties, people we no longer see as friends and others who have become like diamonds to us. One female friend put meals in our freezer for weeks. Another friend told me I could stay at their home while Andrew was at work, that I could sleep on the couch, with instructions that if I messed myself because I couldn’t get to the toilet in time, they were there to help me and get me cleaned up. Fortunately it never got to that, but the offer of that support cemented our relationships at a much deeper level. I had never accepted help from anyone before as I was always afraid of getting close to people, now I just accept those people and trust them as true friends.

Through the hardest part of “survivorship” I had counselling every week through the cancer council for probably 6 weeks – it was tough but rewarding. I am definitely a much stronger more balanced person for it.

I only cried twice through this journey, once with Andrew on the driveway and another time when I was physically really sick: with my blood septic, lying in the bath at home not knowing what was happening to me – I was vomiting, had a terrible headache that nothing could shift coupled with explosive diarrhoea, I thought I couldn’t take it any longer. I cried, Andrew got me to bed and I fell asleep, when I woke up – it passed.

I always tried to educated people along the way on how to treat people with cancer, to be brave and approach the person, respectful of where they are in the journey and empowering by being strong for them.

At one time I felt so bad I got a spray-on tan. People kept telling me I looked really great almost willing me to feel better by making their comments to make me feel better. But the truth was I felt like shit and wanted to say, “It’s fake and I look and feel like shit under it!” all the tan was doing was hiding the alien.

I accessed some documentaries from the Cancer Council. Once I hit the survivorship phase, my adrenalin no longer fuelled me. Everyone was ready to pack up and go home like the marathon was over and it was time to get back to life. I felt so alone and didn’t even realise it, I was going through the toughest part of the journey and had to do it alone. It was a friend from work who talked me into ringing the cancer council again. I told them my symptoms and they gave me the diagnosis of having survivorship issues. I read some articles on what it was like and copied them and gave them to work colleagues and friends so they would know what I was going through. Andrew also gave them to his work colleagues so they would know what we were going through. I don’t think Andrew has worked through all the issues he has yet, but will in his own time.

I’ve been back working full-time for over a month now, it’s hard going and I am generally exhausted but I get a real sense of achievement – a real daily triumph. By mid-afternoon I’m not very productive but I’m getting back into a good routine and the support I have had at work has made that possible.

I have higher blood pressure as a result of having chemotherapy, my kidneys and liver have been damaged and I don’t have a lot of stamina – I have to stop after walking up the steps to the front door of the house. And I have a chemo fog especially when I get tired, I don’t always remember things and at times find it harder to concentrate. I half joke with people that my PDA is my brain –I can safely say that I am only as good as the data in my PDA. I still have a low resistance to infection too, I am currently waiting on surgery at the end of January to remove my big toe nail as we haven’t been able to reverse that infection with antibiotics.

The whole experience challenged Andrew and I as a couple, luckily we were able to get through it together and are deeply committed to each other, our goals have become more about spiritual quality of life, this has been underpinned with our move to Mylor. I think we have always had a strong spirituality, having cancer brought it to the fore for us. I can only begin to fathom what this experience has meant for the people around me. The only glimmer I have of the impact it has had on our friends, came to me after getting through the survivorship issues when a close friend confided to me that when she heard of my diagnosis she sat on a beach and cried because she didn’t want me to die and prayed that I would get through it ok. I was extremely moved and it told me that the journey Andrew and I are on stretches further than I could have imagined.

I was asked to comment on the support we had from our gay friends: a number of them had dropped off who disagreed with us getting married in Canada in 2004, so our group of supportive gay friends had been reduced anyway. Those who remained friends and have stood by us through this journey will always hold a special place in our hearts.

More advice would be to be upfront about your sexuality with the people you’re dealing with and EXPECT to be treated with respect.

From Andrew’s perspective:
When Chris was hospitalised I’d go from work to the hospital, stay there all evening and then go home and go straight to bed. But the support Chris was getting in hospital wasn’t offered away from the hospital, at home, for myself.

Chris always talked about the cancer and treatment as “us” going through it. And I only missed one day of chemotherapy in all the appointments we had. That kept us strong together during this journey.

Hiding the alien (a 10 minute read)

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Artist's Description

There is no doubt about it, Cancer is a bitch!

I hope you can spare the 10 minutes it takes to read this if you have ever felt alone with cancer or known someone with cancer but not understood how to react to them. Regardless of your sexuality or belief system I think there are some fundamentals about the experience. We are all human and we can all hurt.

This piece was written at the end of 2006. I wanted to post it to give other people who may go through a similar situation some hope. I must say I probably should write a postscript as I have well and truly moved on from this point, but I didnt want to wait as I needed to settle this score now.

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