I was told I (very probably) had testicular cancer on 12th October 2016. With TC, they don’t really know exactly what kind of tumour (whether it’s dangerous or what type it is etc.) until they, frankly, whip the bollock out and cut into it. So, on that day, I had an ultrasound with a nurse. She listens to my story of the past 11 months of ball aches, back pains and antibiotics I’d been prescribed but which hadn’t helped my ailments and tells me ‘this definitely needs follow up’ before calling another ultrasound nurse for a second opinion. The second opinion is that I need to go up to the Urology Department straight away. The first nurse asks how long I’ve been getting my pains again. I tell her ‘about a year’ and she makes a face that reminds me of an old schoolteacher I’ve disappointed.
I head up to Urology (at Derriford Hospital, Plymouth — a vast post-war teaching hospital which serves thousands across Devon and Cornwall) and sit in the waiting room naively thinking my aches are related to my sedentary lifestyle of writing and driving to gigs, before I’m called in by the urologist. He asks me some questions and checks me over in a manner which seems pretty urgent, then calls in another nurse and tells me about the near certainty I have TC. We look again at the ultrasound pictures and I can see quite clearly the difference between my left ball and my right ball. It basically looks like the entire thing is full of stuff that shouldn’t be there — weird shapes and cracks and sort of jagged lines which spider out. The urologist assures me that 98% of people diagnosed with TC survive and lead a normal life. ‘Think of Lance Armstrong,’ he says. ‘He won like seven Tour de Frances… He was a cheating drug-using bastard, but anyway…’
Before I leave Derriford that day I have a blood test, which will look for tumour markers. They also give me a cup of tea while I ring my wife and an information pack titled Testicular Cancer: It’s in the Bag. But after flicking open to a page about the different stages of cancer, I get too scared to read any more of it. I’m shitting myself, to be honest. My balls hurt, my back hurts, my abdomen hurts, I’ve got a lump on my foot, I think back to all the times I’ve had flu-like symptoms over the past year. Who knows where those weird cracked tumour shapes have spread out to in the rest of my body? I’m unsure if this is typical behaviour of folks in my position during the information age, but I decide I want to go forward knowing as little about what’s going on as possible. This might be one of the more stupid decisions of my adult life.
Within two days I’m having a CT scan and within ten days I’m on the operating table getting my right ball removed. The blood tests reconfirm I do have a cancer. The CT scan shows it has spread to lymph nodes in my back and will require chemotherapy. The biopsy of my removed testicle offers the full picture that the cancer is specifically a seminoma. It’s around a month after my operation that I know all this. My oncologist tells me his initial treatment plan: nine weeks of chemotherapy (three cycles of three weeks) involving a regimen of three different drugs. This is planned to start on the 29th November, pending how healed I am after my operation and the results of some tests looking at the general state of my lungs, kidneys and hearing — chemo can have some pretty harsh effects on all these things.
My appointment for the kidney test involves the first conversation I have with anyone at Derriford about the NHS. It’s small talk, initially. I’m amazed at how young the nuclear medicine specialist looks, so I ask his age. He’s in his twenties. ‘I came to Derriford straight out of Sixth Form,’ he tells me. ‘There were on-the-job apprenticeships in Nuclear Medicine at the time, but the government is cutting them now, as well as other ones elsewhere in the hospital.’
November 29th rolls around. As instructed by my oncologist, in the morning I call up Derriford’s Brent Ward to ask what time I can come into start my chemotherapy. Each cycle involves an initial five-day stay of 24-hour chemo drips, with the following two weeks including one-day outpatients appointments at the start of each week. When I speak to the nurse on the ward, she tells me there are no beds available today yet, but to check back at lunchtime. I ring again after lunch, but she describes that the hospital is on Black Alert — all 900 beds in the hospital are full and even though I’m booked to come in, my bed’s being used by an emergency patient. I’m pretty gutted, having no idea how long this emergency situation might last and knowing that time is important when it comes to treating stuff like cancer. It feels like forever ago since I got my diagnosis. Obviously, I’m aware that the elapsed time between then and now is mostly due to getting over the operation and understandably having to wait a bit for the biopsy. But that doesn’t stop me thinking that any more time the bad cells in my lymph nodes aren’t being destroyed, they are likely growing and spreading around my body. Thankfully, by the following evening the black alert is over and I can get started on being pumped full of shit loads of drugs.
The amount of drugs I’m on gets me thinking what this might cost if I was paying for it. Aquick search online puts three cycles of chemo at around $10,000 in the US. Presumably this includes the three chemo drugs, and all the fluids and stuff they use in between to flush it through. CT scans, ultrasounds, operations, doctor’s appointments, etc. would add up to further thousands — there is no chance I would, as a freelance writer, have the money or insurance to cover this if I wasn’t in the UK. My oncologist prescribes me tiny injections of a thing called Zarzio, which boosts my white blood cells when the chemo starts destroying them too. They cost £50 each. Over the nine weeks of this planned treatment, I’ll have 24 of them. And there are numerous other supplementary medicines I’ll take.
On Brent Ward, I’m in a non-acute room with three other men. The person opposite me is dying. His family are at his bedside nearly 24 hours a day and I overhear that they are waiting for a bed to free-up at a nearby hospice. The fellow next to me has been having treatment for bone cancer, but he’s in now because he’s got sepsis thanks to his chemo-damaged immune system. He can’t currently walk or control his bowels or bladder, and he assures me that he’s lucky he got into hospital on time and that I shouldn’t delay coming in if I start feeling ill at home. He also tells me the emergency staff carried him up the stairs because the lifts were full, and implies that these precious seconds helped ensure his survival. As well as cancer, the third man in the ward is suffering from delusions and hallucinations due to the mix of drugs he’s on. One night he tries to escape and I see him nearly crush one of the nurse’s hands in his as she escorts him back to bed. I’ve never seen anyone receive a hand-crushing with such dignity.
It’s a bleak picture, for sure. But these three patients offer a pretty succinct example to me of the key expected and avoidable issues which are thrown together in the NHS’s wards up and down the country during 2016. The dying patient who needs a social care bed, so him and his family can get the proper end of life care. The critical patient who should be priority. And the other patient who can be troublesome for the staff in other ways. It’s the nursing staff who have to keep the plates spinning.
This first week in hospital is a massive learning curve for me. It quickly becomes clear that the one key hurdle my body has to overcome in order to survive cancer is also dependent on numerous other factors which can arrive and throw a massive spanner in the works. This could include getting any of the many side effects on the lungs and kidneys etc., getting sepsis, being delayed by lack of beds, being delayed by lack of available staff. I turn this over in my mind for the whole week. On the day I get discharged, the first man opposite gets taken to the hospice, the second guy next to me is up and walking around again and the third man seems in a better frame of mind having had his meds changed.
The delay in starting treatment owing to the black alert means I’ll be spending Christmas in hospital. Amazingly, the start to my second cycle starts promptly on the morning of the 21st December. Even more amazingly, I get upgraded to one of the private rooms in the ward thanks to the fact a lot of folks have been discharged to spend Christmas with their family where possible. I actually get to sleep this time round. Owing to this added privacy, I also get to chat quite candidly with the many nurses who treat me. They pretty much all work 12 hour shifts, usually with one short break when they can get it. They routinely stay a bit longer at the end of their shifts to ensure smooth changeovers (I noticed some stay one or two hours later sometimes). One freaks me out when she tells me how tired she is driving home after shift and I’m reminded of this news story from earlier in the year. ‘My husband doesn’t understand why I work here for little money, long hours and the grief I get from patients sometimes,’ she says. ‘But I don’t understand people who don’t think the NHS is worth preserving, we save people’s lives every day!’
Those words have more weight now I know they were being said by someone who was standing there literally saving my life at 2am on Christmas Eve morning.
In the week after Christmas, Derriford has another black alert (the following week, 20 hospitals across the country report the same crisis level and cancer operations are cancelled). My wife also goes down with some kind of flu/bug thing, which is scary for both of us while I’m at risk of sepsis. Almost inevitably, the following Wednesday I start getting a killer sore throat and by the late evening I’m running a temperature. Upon calling Brent Ward I’m told, again, it is full up due to unprecedented numbers of emergencies in the hospital. The doctor thinks I should go in. But I can’t face the prospect of having to go to A&E in the middle of the night, so I opt to monitor my temperature every two hours with the hope it doesn’t go above 38c. It does cool off. But the more I mention this to nurses over the following weeks, the more I realise this was a really stupid risk to take. More stupid, even, than my earlier adopted Ignorance is Better philosophy.
Three days later the BBC publishes a story reporting that The Red Cross describe the current state of the NHS as ‘a humanitarian crisis’. Finally this is going to kick off, I think. From what I’ve seen of black alerts, what I’ve heard from nurses about what’s going on down in A&E and what I’ve seen reported about other hospitals this makes absolute sense to me. But within a few hours the BBC have changed the news report to put Professor Keith Willett front and centre describing these claims as untrue. I find this editorial move shocking and depressing. My tweet here was sent before the story was changed by the BBC.
On the following Wednesday I head back up to Brent Ward to start my third cycle of chemotherapy. This time when I arrive the ward is full and an emergency patient has taken my bed in the time it has taken between me being OK’d to come in and actually arriving. Somehow, the nurses manage to keep the plates spinning again, do some reshuffling, and I’m hooked up to my drip by dinner time. Caring for the patients is one thing, but the logistics of shuffling beds and staff is quite another. I hear so much about how nurses need to cover other nurses across other wards. There simply aren’t enough. I’m pleased during this week to see a few more students learning the ropes, but I wonder how many will stick around when they’ve witnessed the numerous issues being caused and exacerbated during the ‘crisis’. I feel I’ve been thrown in at the deep end as a patient and I can’t imagine what it must be like for young staff. The day I arrive, the BBC publishes another story: NHS conditions worst ever, say leading nurses.
I’ve been lucky on so many counts this winter. As I write this I’m on my eighth week of treatment with next week being my last pending another ultrasound and CT scan on the 26th and 28th January. 2016 was a weird year and I was glad to see the back of it for the obvious personal reasons. There were wider reasons I was keen to say goodbye to 2016, too, and I feel that regardless of our respective politics, the Migrant Crisis, the EU Referendum and the US Presidential Election did reflect a bizarre collapse of general empathy of people in the west. The lacklustre state response to people dying in the sea, the hate stirred up in the UK back in June and Trump’s rhetoric towards Muslims etc. all added to my own — granted, simplistic — acceptance that people just don’t care so much for others anymore.
But when I first found myself up in Brent Ward back in early December, at the lowest physical and mental point of my life, I realised empathy and care does still exist somewhere. It exists in defiance of broader political trends within the hearts of those who work on the frontline of the NHS. Many people describe nurses as ‘superhuman’ and ‘stars’ but really I see those who have cared for me so far as rebellious. They put caring before their social lives, before money, before their safety and now all in a wider context that seems to put less and less value on care itself. The fact that the end of 2016 saw The Red Cross call the NHS’s problems ‘a humanitarian crisis’ is indicative of how far the tide has turned against those who care for others, and just how courageous nurses and doctors are. Sovereignty and control and economics were the buzzwords of 2016. But care and empathy and compassion are still virtues for some, and we need to make sure they dominate debate in 2017.
Luke Richards is a Freelance Writer. He tweets at @myyada.