Stephen's Story: From Testicular Cancer to Two Weeks to Live, A Decade Later

"What the actual fuck!?"....

is what I wanted to scream at maximum volume as the news was given to me that I had testicular cancer on May 16th, 2014. That date will forever be tattooed onto my brain as the news sank in but didn't register, sitting alone in the waiting room with the news, wondering what the fuck to do.

It's been almost a decade since I left hospital in August 2015 after 116 days straight in hospital and being so close to death I could smell it, so I felt it was the perfect time to share my story with The Robin Cancer Trust.

I'm originally from Stoke on Trent in the UK, lived in London for 15 years and am writing this now from Ecuador - let me explain.... As with all testicular cancer stories, I found a lump on one of my balls whilst in the shower. Not one to intentionally check (as we all should!), I called my GP immediately and was booked to go in two days later.

So I went, dropped my pants and was booked for a hospital appointment at Kings College Hospital on that fateful Friday. Cold jelly on the balls with an ultrasound and an audience of doctors (the lump was bigger than I thought) along with blood confirmed the bad news. I was diagnosed with testicular cancer and booked in for a removal of the offending tumour on Monday. I was alone during this news, my own choice as I didn't want to scare anyone unnecessarily but boy did I wish someone was with me then!

So, all of this happened within one week of finding something in the shower and you'd be forgiven for thinking my head would have fallen off by the way it was spinning those seven days. My partner at the time had been away so telling her at the weekend was gut wrenching. But after many tears, we went on to tell family and friends. Medical professionals will tell you that TC is the "best one to have" with it being the most curable but that does not take away the devastation of that word. Cancer. Way more offensive and upsetting than that other C word if you ask me...... My head felt like a shitshow had been thrown into a tumble dryer and set to "infinite tornado" speed, not having time to think about one thing before the next took over.

Nonetheless, my partner along with friends and family were very supportive as I headed towards the first round of chemotherapy. This was BEP, lasting several weeks and at that point I'd never been so scared. Luckily for me, I came across a Facebook group called CheckEmLads (now Testicular Cancer UK, run by Philly Morris) where I found survivors of cancer and other people going through it. Despite the love and support from all around me, I still felt alone as they didn't have the cancer I did. While I felt loved, I didn't feel seen or connected and these guys and gals saw me and connected with me.

I'd be lying if I said I never thought "what the fuck do they know?" in moments of pain and anger about those around me who loved and cared for me throughout this. Wrong, I know, but a blameless disease still finds a way to affect everyone around you. It gives no shits about your gender, sexuality, skin colour or views on any of those. Cancer is as cancer does.

A survivor by the name of Edward Solly accompanied me to my first chemo sessions and I will be forever grateful to him for that. As the weeks went by the side effects took hold. Constant sickness and diarrhoea were joined at the hip, with extreme fatigue and 'chemo brain' (shit memory and concentration) along for the ride. There were daily injections in my stomach to keep my white blood cell count up and the resulting bone pain had me rolling around on the floor at home begging for it to stop. It got so bad that at one point I almost asked a god I didn't believe in to make it stop.

These sessions were done as an outpatient at Guy's and St Thomas' hospital where I also stayed during the times when infections would have their way with me due to a broken down immune system. Chemo doesn't just go for the cancer, it's brutal in the ways it also affects your body and mind in the process.

After what felt like forever, everything subsided and I was sent home with the good news that the tumours had shrunk enough for them to eventually disappear and they'd keep an eye on me for a few years. You never say you're "clear" of cancer, but rather "in remission" for the sake of it coming back. And that's what happened after going back to "normal" and attending one of my check up appointments. One thing I've learnt from this is that doctors have the worst poker face and if you ever get a chance to play with them, go all in. They are life savers and givers and amazing humans, but you can definitely tell the outcome of an appointment before your butt touches the seat. My stubborn tumour markers had decided to go up again and the pains and aches I had from slowly easing myself back into work were tumours that had returned for the sequel I never wanted to watch.

I wouldn't say that the cancer "came back" so much as that it never really went away, just hid for a while. But don't trust me, what the hell do I know? Another round of chemo was planned for November/December and this would be a different one - IPO. I was going to have this at St Bartholomew's Hospital under the care of an amazing doctor and his team, a man well known across this particular field of medicine for dealing with all sorts of variations of the disease and doing it well. He shall remain nameless out of respect though I'm sure he's very well known amongst survivors and their friends/family. More weeks of chemo as an inpatient, but there were added side effects to this IPO that made BEP seem like a walk in the park. In cold situations, the affected areas would feel like extreme pins and needles - a great situation to be in during winter. The feeling from grabbing a cold drink from the fridge made sure that I would stay away from the freezer sections of supermarkets, and the journeys home from chemo and being outside were memorable for all the wrong reasons.

Christmas and New Year 2014/5 were spent in hospital due to infections and of course a very low white blood cell count. However, the chemo did its job once more and eventually I was sent home as my doctor had plans for the next steps ahead. I was once again in remission and by now my body, mind and soul needed recharging for something else nobody was expecting. And this was end of level boss type shit.

The plan was to harvest my stem cells for storage to be put back into me after a week of high dose chemo that would deplete my immune system to zero. The thought alone of having chemo for a third time was the worst kind of news, despite the fact that everything was to give me a new chance of life. After 4/5 straight days of TOPKAT chemo, the stem cells would go in and 'reset' my immune system along with a tonne of drugs and other procedures. This would be done again in a few months time so double whammy for high dose chemo? No choice, my friends...... no choice.

The stem cell harvest was a long and painful one so I will spare the details, but it was a success and they went into frozen storage while I waited a few weeks before going back in. The side effects as before (I could touch cold stuff this time though) were joined by the total lack of an immune system and this changed the way that people would visit as a cold would mean trouble. And infections did have their way with me during this time. I had all the lines for IV chemo and blood transfusions, collecting them all like Pokemon. My favourite being the Hickman Line, in and out of the chest. 27 days later, I was sent back home to recover for a couple of months before round 2. I'd taken another beating but my white cell blood count was going up and everyone was happy with the results. Through the battering from the previous two chemos and this one, my body was so tired and weak that I couldn't leave my 1st floor flat and a couple of times I ended up in A&E after passing out and not waking up.

April 7th, 2015 is another date etched into my memories as the day I was admitted back into ward 5A at Barts. Jokes were made and fake bets placed about whether or not I would beat the previous stay of 27 days. I was confident that after the last time, we were all better prepared for what was to come. How wrong we were. The stem cell transplant did not work and my immune system was at zero. Multiple infections were involved and I ended up on morphine 24/7, still asking for additional painkillers as the pain was so bad. I couldn't eat and my weight dropped to a skeletal 45kg, so my only way of getting nutrients was through a tube up my nose and into my stomach. As well as a catheter, at one point there were tubes in my back to drain my lungs that had flooded with fluids. For around a month, I couldn't make it to the toilet myself so I would literally shit the bed and wait for the amazing nurses to kindly clean me up. It became the norm, but I could easily say that these days were the lowest point in my life.

My brother and mother were tested as stem cell donors but weren't a match. I had edged closer to death and now had around two weeks to live. Me typing this is of course a spoiler though as a donor was found through the amazing stem cell charity Anthony Nolan. My donor was contacted and went through the same painful procedure as me and three was indeed the magic number as the TOPKAT process was repeated. I'd been drifting in and out and eventually woke up to a group of nurses crying around my bed. "Who died?" I asked, not knowing what the hell was going on. It took some time to realise it was almost me.

My immune system was back online and I had to prove that I could walk up some stairs and make it to the bathroom before being allowed home. The 27 days we joked about on my admission ended up being 116 and I had months of learning how to walk again and two years of medication to prevent my new cells from attacking the alien body they'd been put into.

A year after leaving hospital I did Mount Snowdon with the CheckemLads Charity , and that's where I met Toby - the founder of this very charity. I never met my donor but he wrote me a handwritten note wishing me well and to live my life with this literal second chance. 6 years later, I booked a one way ticket to Brazil in the hopes of travelling to a few countries in South America to match the 116 days I'd lost in hospital. That ended up being 404, with almost the whole continent completed.

I have more tales to tell for another time, but rest assured I have done some crazy shit since then.

My favourite new pastime is summiting mountains and volcanoes. As I wrote at the beginning, I'm writing this from Ecuador, and I hope to live here as I have fallen in love with this country and its people. Strange to think that this solo travelling and decision to move wouldn't have happened without all of this. I know that it's a horror story in parts, but I would never have made it without our amazing doctors and nurses within the NHS, and the amazing charities involved. Throughout all of this ,a decade ago and even to this day my (now ex) partner would always "BTC" on bad days after treatment or anything that may piss me off etc. The meaning behind this acronym? Better Than Chemo, and this was and is something that gets me through anything.

You don't exactly forget the time you almost died. My check ups with oncology and hematology will last forever, and that's fine. That and the side effects are a pay off I'm lucky to oblige for still being around.

Thank you for your time, and thank you to The Robin Cancer Trust for kindly letting me share my story here. Look after yourselves, and use charities like this one for help.

You are not alone.

Stephen x