My name is Carl, and I’m 54 years old. I’ve been married to Emma for almost 15 years, and we have two children, James who is 11, and Amalia, who is 8. This is my story.

One morning in late September 2017, I woke up, went to the toilet, and there was blood in my urine. And I’m sorry to be graphic, but it was not a little bit of blood; it was more like a horror movie amount of blood. Obviously, something was wrong, so I made an appointment with my GP, who assured me when I saw him for a urine test it was probably just a urinary tract infection, and said he’d call me in a few days to confirm this.

When he called to tell me I didn’t have a urinary tract infection, and that I’d need to be seen at a hospital for further tests, he asked if I wanted to go to Bedford or Stevenage. I asked if I could go to Addenbrooke’s Hospital in Cambridge, as both my children had been born there and I thought highly of it. ‘Good choice,’ he said, and told me he’d see to it.

A couple of weeks or so later in the urology clinic I had a cystoscopy of my bladder (not fun; I hope to never have another one) followed by an ultrasound examination of my kidneys. I don’t know what it says about me, but at this point I still had no inkling what they were looking for. Aside from blood in my urine, I thought I was perfectly healthy. I had high blood pressure, but I was getting older (48 at the time), I had back pain (again, older), and I sweated a lot at night (I thought I was just hot). The only other strange thing was if you looked at a photo of me with other people, I was noticeably more red than everyone else, but I had no explanation for this, either.

So imagine my surprise when after the ultrasound exam, the surgeon sat me down and explained that there was a tumour on my right kidney. It was approximately 11cm around, had probably been growing for several years, and while he couldn’t say for sure it was cancerous, he said the chances were ’90 percent’ that it was. Even if it wasn’t, it was going to have to be surgically removed, and pretty soon. I nodded, and the only intelligent question I could come up with was whether or not the cancer had spread. He said he didn’t know, that there would be some more tests.

When I got home, Emma asked how it had gone, and I said, ‘About as bad as it possibly could have.’ Luckily, Emma, like me, takes life as it comes and quickly adjusts to new situations.

(A side note before we move on: I looked red in pictures because cancerous tumours put out a hormone called EPO, which causes the body to make more red blood cells. You learn some interesting things as a cancer patient.)

Over the next few weeks I had a CT scan and an MRI scan, which showed the cancer had spread to my lungs. Depending on how fast growing it was, this meant I’d be on some kind of treatment after the surgery, but the details would be determined after the surgery. The surgery itself went well, and within a month I was back to work as a television news editor.

In January 2018, I met with oncologists at Addenbrooke’s to discuss treatment options. At the time sunitinib was the first line drug that worked for the most people most often, so that’s what I went with. It turned out I’m sensitive to drugs like sunitinib (called tyrosine kinase inhibitors, TKI), and it shrunk all the little bits of cancer in my lungs by half, and then kept them stable for another 2.5 years. The down side of sunitinib was it turned my hair white, and my sense of taste was altered so that meat and cheese tasted terrible. In addition, my blood pressure went sky high, and I had a lot of gastrointestinal difficulty, all of which are common side effects of TKI drugs.

Something else I learned about myself at this point was how important my image of myself was. I’d always looked a few years younger than I was, and when I’d tell people I was 47 or 48 they’d often say something like, ‘Wow, you look really young for your age.’ When my hair turned white this stopped. I no longer looked young, I looked like a sick person, and I felt cheated. These days I laugh a little to myself when I tell people I’m 54 and nobody is surprised.

In November 2020, sunitinib stopped working. This was expected, as TKI drugs don’t work forever. My next drug was a combination of lenvatinib and everolimus. Colour returned to my hair, but now it was much more grey than it used to be, and in happy news I got my sense of taste back. The blood pressure and stomach problems continued, though. The lenvatinib/everolimus combo worked well, and things were stable for another 2.5 years.

In April 2023, things took a major down turn. Nobody knows why, but sometimes cancer decides to get very aggressive all on its own, and that’s what mine did. In a few short months it spread from my lungs to my ribs, the rest of my abdomen, and to my brain. Just prior to this I’d had one treatment of a new (to me) drug called nivolumab, but due to the speed with which things were now growing I had to quickly switch again to a drug called cabozantinib. NHS patients get 4 drugs, and this would be number 4 for me, so if it didn’t work there were going to be difficult choices ahead.

It turns out cabozantinib worked so well, and it shrank one bit of cancer in my bowel so quickly that by mid-June it had left a hole, and the hole was leaking. Normally, this could be repaired surgically, but my health was so poor due to the cancer that when the surgeons met to discuss my case, they estimated there was a 60 percent chance I’d die during the surgery, and this was too great a risk. Instead, they pumped me full of antibiotics and told me I had a few more weeks or maybe a month, and then an infection was probably going to kill me.

As you can imagine, the hardest part of this was how to talk about the situation with my kids. We’d always been very forthright with them both, telling them back in 2017 that Daddy was sick with a disease called cancer, and that I was taking medicine to control it, but that it was a serious disease and someday I would probably die from it. Now we had to tell them that someday had arrived. I can’t put into words how difficult these conversations were, so I won’t even try. I will say I’m glad we didn’t try to hide the situation from them or to downplay how serious things were. James and Amalia are both very smart and intuitive, and I’m proud of them for how well they’ve dealt with hardship far beyond that of many of their peers.

We met with palliative care nurses, and went to visit a hospice, trying to get a handle on what the next few weeks would be like. We did powers of attorney, made wills, filled out advanced directive/do not resuscitate paperwork, and I officially quit working. I made a lot of phone calls to friends to say goodbye. I tried to come to terms with dying, but mostly I just kept thinking of things I wasn’t going to have to deal with anymore. ‘My shorts are worn out, and I need new ones,’ I thought at one point, ‘but I’m going to be dead by summer, so I guess I can quit thinking about solving that problem.’ I can only speak for myself, but thinking seriously about my own death was pleasantly freeing in the sense of not having to concern myself with things too far in the future.

Throughout June and July I kept waiting for things to start to decline, but they didn’t. Eventually I thought I’d probably ought to get back to oncology and see what was going on. A set of new CT and MRI scans showed my bowel had healed itself, and my cancer had calmed down and was now growing at the more stately rate I’d been used to prior to all the drama. My very happy oncologists were now ready to restart cabozantinib treatment, although at a slightly lower dose that would hopefully not cause more trouble than it prevented.

Things went relatively smoothly for a long while – well 9 months, anyway. One of the side effects of cabozantinib is it can cause heart problems, and in March 2024 I had a heart attack. It’s not certain that cabozantinib caused it; as one of the oncologists put it, ‘It could be cabozantinib, but you’re also a man in your 50s, and men in their 50s have heart trouble.’ After talking it over with the oncologists, we decided to keep going with cabozantinib and accepting the risk of heart problems. (This choice was pretty easy, seeing as the other option was stopping cabozantinib and dying of cancer). Either way, I’ve had more first class treatment from Addenbrooke’s and Papworth Hospitals, and to look at me you’d never know I was sick.

And that brings us up to date. In June 2024, I’m still on cabozantinib, the cancer is stable, and I’m able to enjoy time with my family, play with my kids, travel (within the UK these days; travel insurance companies want nothing to do with me), and enjoy my life. This week I’m going to go shopping for shorts.