By: Stephen Lee Clarke
Checkemlads | Website | Twitter | Just Giving
Back before the summer of 2014 we got the terrible news that one of our writers had been diagnosed with testicular cancer. However, the early prognosis was positive, some quick treatment and he should be back with us. Little did we realise then that it would turn in to a 14 month odyssey that would take Stephen to the brink physically and emotionally. In his own words, Stephen tells his story and how he used music as a crutch in the dark times.
May 16th 2014 will be a day forever etched into my brain, as it was the day I was diagnosed with testicular cancer. But little did I know at the time how long my battle would take, or how massive the influence of music would be in my fourteen month fight with the disease. And, the charity CheckemLads – full of survivors and fighters who also accompanied and guided me all the way through this journey. This is not a sympathy seeking story, but an honest insight into what happened.
After having some abdominal pain for a few days, I began to poke and prod myself to see if anything else hurt. As I did, I felt a lump on my left testicle that was painful to touch. I immediately knew this wasn’t good, and without even thinking arranged an appointment with my GP. After he took a look and feel, I was sent to the hospital the next day for bloods, an ultrasound and CT scan. It didn’t take long for me to be sat down and told it was cancer – I was alone, but had made that choice so that if it was nothing, I wouldn’t have to worry anyone. I broke down in tears and asked how bad it was, and I was told that the testicle would be removed, and then more tests would show what to do next. I went home in a daze not sure what to do next, who do I tell and how do I tell them? Letting people know that you have cancer, and trying to tell them it’s gonna be ok when you’re just as scared is a hard thing to do. So, I decided to leave it for a day to let it sink in first – I got blind drunk and put my headphones on, a gibbering wreck hoping that the music would wash away the thoughts spinning in my head like a tidal wave in a washing machine on spin cycle. At first, I listened to the saddest sounding post rock I could find and sat on the floor, crying and feeling sorry for myself. After a while though, something heavier and uplifting came on, and my attitude changed. My flat became a one-man dance floor, with its occupant singing and dancing in the way that would make those crazy uncles at a wedding look good! I was going to beat this, and the soundtrack to my journey was already taking shape.
A few days after the operation had been successful, I started to scour the Internet looking for a support group. I wasn’t going to google the disease for fear of coming across unproven facts, filling my brain with fear and confusion. It was then when I came across CheckemLads, a charity run by Philly Morris (a double cancer survivor) and others. I had personal questions I felt that doctors couldn’t answer, so I joined up and asked away thinking that this would be over soon and I would leave the group as a grateful survivor. What I didn’t realise is that I would come across the most inspiring people I could ever wish to meet. I felt safe and at home amongst these brave men (and the women that supported them), who had stories and advice to help me along the way. A fortnight after surgery, tests were taken and my fiancé Lorna and I approached our appointment with a mixed bag of emotions. If there’s one thing I’ve learnt over the past couple of years, it’s that doctors have very bad poker faces – and as soon as we sat down it didn’t look like we were going to get good news. We were told that the cancer had spread to the lymphnodes in my chest and abdomen, and that nine weeks of chemotherapy were needed. Our hearts sank and tears flowed, but we kept it together and arranged the treatment. Immediately, I went to CheckemLads and asked for help and advice. Unaware of what was going to happen next, their advice and positivity made me feel like this was something that we could get through – nine weeks would fly by, and I knew that along with the group, friends and family, we could smash it.
I’ve been in bands for two decades now, and still get nervous at the thought of playing to a crowd – but never as nervous as when the first day of chemo appeared. A guy by the name of Edward Solly from the group (who I called my cancer Jedi Master) came with me to ease the tension and get me through it. Doctors and nurses and the entire NHS are nothing short of amazing, but having someone who had been through it by my side made a huge difference. Someone suggested to me I make a playlist to accompany my few hours there each session. We all love music, and know how emotions can be evoked by its transcendence between our ears. It can give you the warmest of hugs, or slap you silly and make you want more, a sonic drug that can take you anywhere your mind will let you. Pretty deep, but I swear those songs carried me through that period as well as positivity from people – and despite the side effects (sickness, diarrhoea, constantly tired and in pain) we made it! I was told that the cancer cells had shrunk dramatically, and would disappear on their own. There would be check ups for a few years, just routine to keep an eye on me. I was battered and tired, but happy to get back to the way things were. The music I listened to on the way to work now seemed to have more meaning. Every note and beat (whatever the genre) echoed more in my brain, the same melancholy riffs now producing huge grins instead of tears. The first check up was approaching, and I was excited to see what they had to say.
As the doctor sat me down, I was already wishing we were sat at a poker table with everything on the line. Her face was already telling me that this was not good news. My tumour markers had shot up and the cancer had come back – only a month or so after being told it was on its way out (later on I found out it had never gone away). The aches and pains I thought were just my body adjusting to going back to work were tumours applying pressure. A fuse had been lit, and my mind was blown. I couldn’t do this again, but there was no other choice – I’d already told people I was getting better, so having to break bad news again to people was heartbreaking. Moved to a new hospital, and under a new consultant (Dr Shamash), a new treatment was planned and music would again join me on the next chapter. New chemo started for another couple of months, same side effects but with added numbness throughout (again, Ed joined me on my first day). I had been an outpatient up until now, but an infection meant that one cycle had to be spent in hospital for close observation so Christmas and New Year 2014/5 were spent in hospital under the greatest care imaginable. My headphones were a life raft that kept me afloat, the seas got calmer and I felt myself drifting back to shore. Another check up was on the cards, this time I was unsure what hand we were gonna get, and so I wasn’t going to get my hopes up. I was right to think that……..
I was told that more chemo was needed, but this time it would be high dose, followed by stem cell transplants. I didn’t think I could take any more, but it was necessary and there was no choice in the matter. For a whole day, I was strapped up to wires, while a very clever machine took the stem cells out of my blood and filled up bags of which were to go back into my body and regenerate my immune system which would be taken out by the chemo. It’s crazy to think that something that is attacking the disease is also attacking you from within. I’d have to go into hospital for as long as neccessary, so numerous playlists were created to go with whatever I may be feeling at the time. In we dived for another lap of the pool, this time we were in the deep end. As prepared as I thought I was, I had no idea how much harder this would be. Five days of chemo started, and it wasn’t long before the effects kicked in. My mouth and tongue were covered in ulcers, and the pain was unbearable – morphine wasn’t even touching the sides and I felt myself getting weaker by the day. Even so, I was excited to get this done and get back home to my new record player my ex-housemates had bought me, and the fast growing collection of wax that friends, DJs, bands and record labels were sending home. That made me get myself together and move on. My vinyl collection was rapidly growing, and the urge to listen to it all pulled me towards getting out
Twenty-seven days later, the stem cells had worked, my immune system was on its way up and thinks were looking good. I was glad to get home, but only had a couple of weeks before the process was to be repeated. With the previous experience under my belt, I felt prepared and (almost) ready to go. I was dreading it, but at least I knew what was coming. So I got together a new army of tunes to back me up. I joked with the nurses in the ward on my return that I would be out of here in less time than the previous stay. How wrong I was. The high dose chemo had started, and in expectation of the ulcers I used mouthwash way before it was needed and boy did it help! The pain returned in my body and morphine tried, but by this point I was more tolerant of it and was determined to finish what I hoped to be my last bout of chemo. There was less post rock and more punk rock at this point, and I was ready for stem cells. Unfortunately this time round, they didn’t work (I can’t say anything about this due to legal reasons) but my immune system had already been wiped out in preparation. I was now vulnerable to infections, and they came thick and fast – all of the previous side effects were now occurring, and I also had Shingles with scars to show for it. My Hickman line (wires that go into your chest and to your heart to make IV and blood tests easier) had got infected too so had to be removed. Now, even the doctors were concerned for me.
At this point my weight had dropped to 42kg (6st 7lbs), I was on morphine 24hours a day and was getting weaker by the minute. I couldn’t even make it to the portable toilet next to my bed sometimes, and had to wait in my own mess waiting for someone to come and clean me up. I don’t remember a particular weekend, but I was told that friends and doctors were at the edge of my bed constantly talking to me for fear that I’d fall asleep and never wake up. The songs that were playing had less effect, and for a while I stopped listening – I was struggling to carry on, and with no idea what was coming up I almost gave up. During this dark period, someone took it upon themselves to sneak into my room and steal my iPod, my only source of music I had recently turned my back on. How some anyone had the nerve to do that was unimaginable, but I soon saw the other side of the coin when after people found out they got involved. Darren Saunders (a fellow member of Echoes & Dust) had set up a Just Giving page to raise money to buy a new one, and within a few hours the target was met (and then some!). My friend Laura Percival from work had set up an auction to help us pay the bills, items being donated without a second thought. CheckemLads set up a text donation, and again people I knew and loved along with complete strangers were generous to help out with bills and give us one less thing to worry about.
Wrong pop from Nick O’Hara Smith on Vimeo.
Three months had passed since my arrival this time, and I genuinely thought I was never going to get out. Doctors waited to see if my immune system would come back, but nothing happened. More infections came and had their way with me, until at some point it was decided a donor for stem cells was needed. The two week wait for a donor felt more like two years. I’d realised with the loss of music how much it was helping me to get through this. Among the kind donations and words was a video from a four year old girl by the name of Eleanor Stollery, whose dad Tim had also been through this disease. She told me to get well soon and sent lots of love. What makes this girl my all time hero is the fact that she has an inoperable brain tumour that has already taken her sight. Her positivity and smile broke my heart but also gave me strength. I would never feel sorry for myself again. A donor was found and the tunes resumed playing. Things were looking up. During my stay, a man I now refer to as ‘Pops’, Nick O’Hara Smith had been visiting from CheckemLads on a regular basis. It was agreed that we would film footage of this journey in hospital and afterwards to show those who may have to go through the same that there is a light at the end of the tunnel, no matter how far away it seemed. By now I felt like a chemo veteran, so I was ready for the final chemo to take its hold. Two weeks later, the new stem cells kicked in and my immune system (slowly but surely) was coming back. After a four month stay (mostly in isolation), I’d made it. Discharged and cancer free, I was now on the road to recovery! It took fourteen months of my life, and getting myself back to ‘normal’ will take a long time – but I’m happy to take the time for my body to catch up with my over excitable mind.
I’m not a religious guy, but I am forever grateful to be alive and share this story with you. All the things that used to really annoy me off now bounce off like bullets on bulletproof glass. I’m happy that I can now get up the stairs to the flat on my own, I can shower myself, dress myself and even make it to gigs again. The little things in my life I took for granted are now huge steps forward in getting better. Music played a huge part in my recovery, and I appreciate it now more than ever. To my future wife, I burst with love for you every day – my mum, brother, friends old and new, the Echoes & Dust family (thank you for letting me write this) and of course everybody in CheckemLads. You all showed love and compassion through the hardest time of my life and I sincerely love you all for it. Please follow the links on this page for CheckemLads, for donations and things you can do to help, and also if you need to talk about anything. And very important, you can find the best way to check yourself for anything you may find different in your testicles. If you think there may be something PLEASE get yourself get checked out ASAP – dropping your pants and letting a stranger check you out could save your life. It saved mine.
