Thu 24 Sep 2009 In: True Stories View at Wayback View at NDHA
Cancer survivor: Simon Clark When outgoing gay guy-around-town Simon Clark, now 26, noticed a small lump on one of his testicles last year, he had no idea it would lead to a year-long medical and emotional roller-coaster. He shares his brave survival story with GayNZ.com. GayNZ.com: When did you first realise something was wrong? Simon: Around June 2008 when I was 24, I noticed a small lump one morning in the shower on one of my testes. I was curious, but it didn't really register with me what it might be, so I just forgot about it for a while. One day the following week while at work I suddenly had some intense pain come over me like someone had just smacked me in the crotch with a sledgehammer. I went home sick and made an appointment with my doctor for the morning. After some late night health research on the internet (I don't recommend this by the way) it seemed quite apparent that there was a good chance it was cancer – and that's immediately where my overactive mind went anyway – this is the first point at which I really started to get scared. By the time of my appointment, the pain had gone away but I was still obviously very anxious. My GP told me it was probably nothing and most likely just some kind of infection and gave me some antibiotics, but never the less he sent me for an ultrasound just to be safe. My fears had been allayed and I was thinking the scan would be just a routine thing I had to get out of the way – boy was I wrong. During the scan you can see the monitor in front of you of what you are looking at – even a layman can figure out that a dark patch on the screen in what should be clear tissue isn't something you want to be looking at. The nurse taking the scan then rather bluntly told me that as an ultrasound only shows an image of what's there that the doctors would need to stick a large needle in me to see what it really was (this wasn't the case at all actually as I found once I did go to see the Oncologist). My GP made an appointment for me to see an Oncologist the following week. Looking back to photos of me just before I got sick, I was incredibly skinny – it's apparent now something had been wrong for a while. How did you initially react? I managed to keep myself together on the way back to my apartment from the ultrasound. I bumped into an acquaintance on the way home who stopped to chat - you always run into people you know at the worst of times. But once I got home I had a complete meltdown – I basically started to think about all I had accomplished so far in life, what I thought my life was going to be like originally and how all of that was going to be completely destroyed. Luckily I had my wonderful Mother and best mate Zac who came over straight away. What did your doctor say? My doctor was realistic with me, he left the ins and outs of what cancer is to the Oncologist however he helped talk through with me the obvious concern about losing part of an organ that most men - gay or straight - are rather fond of. Are you 'out' to your doctor, by the way? Simon at Gay Ski Week I always had a really good relationship with my GP, and have always been able to talk about anything including gay sexual health issues with him. It's so important to have a trusted relationship with your doctor for this very reason so that if anything does come up that you are concerned about you can go straight to them without any delay. At what point did you tell your family and friends close to you? Was that a difficult decision to tell them? I'd mentioned to most of them before I even went to the GP that I was worried about this lump so they knew what I was up to. My Mother was obviously pretty devastated when I told her - probably even more than I was. My close friends of course stuck by me and provided a shoulder to cry on whenever I needed it. Others who I guess are more acquaintances that I told often responded quite awkwardly, for some it just was too intense to handle which I guess is kind of fair enough. From the compassion that some people showed, it really made me love, value and respect many friends in a whole new light. The people I worked with in particular were amazing. What do you remember of pre and post surgery? Pre-surgery, I've never been so scared in my life. I remember being wheeled into the operating room and my whole body was shaking uncontrollably. Post surgery I woke up on cloud nine with absolutely no pain at all, which was unexpected given the area of the operation. The doctors don't actually make any incision at all down there to remove the tumour – they make a tiny cut in your abdomen and remove the cancer through a technique called lapscopic surgery. Despite my main concern being my overall health, as any man would be I was quite concerned as to how everything would look 'down there' when finished. The doctors gave me what you would call a 'fake ball' in no uncertain terms. While there was some bruising post surgery, after about a month everything settled down and a year on now that the scar has healed, it's quite had to tell anything had happened to me at all physically at least. Following the surgery, how long did the recovery process take? Simon went bald during chemotherapy The surgery was really a walk in the park compared with the intense BEP chemotherapy that I received for two months which completely savaged my body. I lost all my hair (apart from on my arms and eyebrows), muscle-tone and my skin went kind of translucent and red. I lost my identity almost completely. While devastating psychologically for the most, a part of me found the transformation quite fascinating and at many moments exhilarating in a warped sense – completely losing who you are inside and out and becoming something new and different. I got straight back to work (and my social scene) two weeks after the chemo finished, however looking back I was probably in a complete conscious wonderland at least up until Christmas last year. Did you fear death? Or fear your life would change forever? There were moments during the chemo which were particularly bad. Being brought into Auckland Hospital ED at around midnight during the chemo period once because the doctors thought I may be getting sick was horrendous. Any virus such as a cold you get while doing chemo can be potentially fatal. My lowest point though was definitely after the surgery and chemo – when going through the diagnosis and treatment, shock kind of took over and I just went into auto pilot. However post-treatment once the dust settles and your body and mind have been completely transformed forever, picking up the pieces was quite the journey and a psychological maelstrom in itself. I never feared death, although death was certainly a recurrent thought in my head at the time. From the moment after the initial scan my life had already changed forever so there was really no turning back at that point. One of the toughest things to deal with during treatment was the knowledge that everyone's lives around you were going on as per usual – people going to parties, the gym, dates etc while your life has been reduced to lying in a hospital bed all day with a constant feed of chemo drugs hooked up to you, whacked out on sleeping pills and never wanting to eat anything. Sleep also never brought any comfort during the chemo, I would get into bed and I could experience a state of unconsciousness but I woke feeling like I hadn't slept at all. How do you feel now? A year on, Simon's back to his busy social life One year after finishing my chemo, I feel pretty good about life in general. The whole experience gave me a greater perspective and understanding on my life and human nature. While my body is back in shape, there are still deep emotional scars which are still healing. I can consciously notice myself reacting to certain situations in behaviours and moods which weren't present pre-cancer. Ultimately the experience has given me a greater confidence and strength which didn't exist in my life before and in a way I am grateful for that. After being locked away in hospital for so long and having your body pumped full of litres of devastating drugs, I count my blessings every time I go out again whether it be enjoying the outdoors, catching up with mates or the occasional party. I once saw an interview with Kylie Minogue on Rove on what her battle with breast cancer was like where Rove asked her if things were "back to normal". Her response was "back to normal but a different kind of normal than before" – I think this statement sums things up pretty well for anyone dealing with issues post-trauma from sickness through to loss or addiction. Do you think gay men, or men in general, take their health for granted? It's hard to generalise. Most of my mates straight or gay, male or female get up to just as much mischief as I do, however I think there is a tendency for us to treat our bodies like an amusement park particularly when we are young. The key is to know your limits if you can and never do anything too impulsively, particularly while under the influence of things which might lower your inhibitions to point where you don't care about your body, and all you are seeking is that instant gratification. What would you say to people reading this, advice from someone who has been through so much? I guess just that your life can change in an instant without you having any control of what is happening. You can go through some pretty dark times however never underestimate your own willpower and ability to think positively. Perseverance is a favourite word I came to know well last year. While it can be easy to lose faith in life and people when dealing with pain, they can also surprise you as well – I love socialising, visiting new and exciting places and meeting new people for this very reason. This month has been dubbed 'Blue September' to raise awareness of another type of cancer which effects around 600 Kiwi men each year. Find out more about prostate cancer - and how to lower the death rate - on the official Blue September website. Matt Akersten - 24th September 2009