In February 2021 I was diagnosed with cancer in a tonsil and nearby lymph nodes. Mid-March I went through 7 weeks of treatment. Almost exactly six months after my diagnosis, in August, I was given the “all clear”. I’m writing this at the end of November and would say I feel fine now, if not normal.
As an intro, I’m in my mid-40s and live in Wellington with my wife. We both work. I think I was very lucky in that I didn’t have many of the outside pressures that could’ve made recovery so much harder: no other health problems, no parenting, no financial issues, living near a hospital that could treat me – even the pandemic didn’t really get in the way.
Last November I noticed one of my lymph nodes was enlarged. I’d had some kind of cold and thought it was related, like when people say their glands are up. I didn’t feel sick at all, but the bulge wasn’t going away and I found it weird it was only one side. I went to my GP. She took me through all the right checks, like seeing if any other lymph nodes were swollen, and basically didn’t reckon it was cancer from those external checks. So I kept in touch and in January, when the lump hadn’t gone down and my GP had run out of things she could do herself, she said the next step was a referral to an Ear Nose and Throat (ENT) specialist.
A few weeks later I popped out from work to see an ENT at Wellington hospital. He diagnosed my cancer straight away. He had a scope that he put up my nose, to look at the inside of my throat (something the GP couldn’t do). He found a bigger lump on a tonsil and said he needed to take a biopsy of that lump right now. After he’d done the biopsy, he told me that he thought the lump was a tumour, but that the good news was it was likely of a type that was fully treatable. (People don’t often use the word “cure” around cancer, but I heard it several times in the next month or so.) There was nothing more to do now but to get the biopsy results. I asked him if he had any alternative diagnoses and he said something, but it was really obvious to me he was sure it was cancer.
I couldn’t really say how I was feeling when I got the news, or even immediately after. I guess this is classic shock. Intellectually, I’d always known there was a chance it was cancer, but over the next months I’d learn a lot about knowing something versus experiencing it. Two different kettles of fish. The nurses escorted me out and told me to go home, not back to work, and to take care of myself. They asked if I would be home alone and encouraged me to get support. I did go home and my wife came home too.
Here’s what I looked like in March. A bonus Adam’s apple that I really didn’t want.
I think it was only another week when I got the biopsy result. I had a nurse who was like a case manager, who I could call at any time. I’d gone back to work the following days and had kept it quiet from everyone but my boss. I was at work when the nurse called me. After a bit of chat about going into the hospital to get my results, she said she was willing to tell me over the phone if I wanted that. I agreed. So, sitting in a little meeting room in a big office building, I got the confirmation that I had a tonsil cancer that had spread into two lymph nodes and an idea of what would happen next. The nurse was great, in that she gave me enough information about what my treatment would be like and emphasised that it’s the kind of cancer that could be fully treated. She could even give me a rough idea of when treatment would start. I tried going back to work for a while, but that was just never going to happen! I took the rest of the week off to process it all.
I learnt that I’m one of many men who develop a throat cancer due to having the virus HPV. The doctors were certain about the connection, based on a specific “marker” in the biopsy. I’d never heard of tonsil cancer before and never heard of getting cancer from a virus. In general, I reckon I was very accepting of my situation – I never found myself dwelling on the “why me?” question or “if only…” scenarios – but when I heard about the HPV connection and realised my cancer was avoidable, I did feel quite upset. Men usually carry HPV with no symptoms, so this is the first I’d heard of even having it. I felt a bit ashamed about having the virus, but I think it’s important to write it down because kids can now get vaccinated against HPV. The vaccine is called Gardasil and it effectively stops you from getting the type of cancer I had.
Talking about having cancer
The best advice I got right at the start was that communicating what’s going on can be like a full-time job, on top of going through treatment and recovering from your illness and whatever else you’ve got going on in your life.
I talked in person with some family and friends really close to me, then did a big email out to a wider circle who I thought should know. I waited until I knew my treatment plan so I could answer a bunch of worrying questions people would have before they even asked. And in that email I made it clear that I wasn’t going to have a lot of energy to keep everyone up to date, or even to reply to people. I did a similar thing with workmates.
My sister offered to be like my own communications person, so I leaned on her when I had something new to tell the rest of the family.
Sometimes I found myself sinking a lot of energy trying to comfort people, when I was the one with the cancer. I do think it’s really important to share what’s going on, but I figured out pretty early on how much I wanted to share and with whom.
My treatment plan was seven weeks of having chemo on a drip every Monday morning, and then radiation treatment five days a week. The doctors talked about the chemo “sensitising” me for the radiation, to improve its effects. I learnt that there are multiple types of drugs that get called “chemo” and before treatment began the doctors explained the possible side effects of different drugs. I was particularly anxious about possible hearing loss, which was a side effect of the most effective drug. But the doctors talked about how they’d manage the risk, and I went with that drug in the end.
One surprising thing was that the chemo plan wasn’t going to affect my hair. I thought it was just standard that you lose your hair if you have chemo.
One thing I wish I’d known before the treatment was when they would know if it had been successful. It turned out you have to wait three months from the end of treatment for the treatment to run its course completely.
I also didn’t understand in advance that I wouldn’t really feel anything during chemo or radiotherapy. Like, no burning sensation or nausea or whatever. I found the lack of a physical sensation during treatment quite weird.
Chemo took several hours, sitting in a comfy chair with others having similar treatment. I took a laptop and mucked around on that. My wife joined me every time and there are volunteers who come around with snacks and drinks and such.
Radiotherapy was really quick, maybe 10 minutes each time. On the Mondays when I had chemo, I would have a break and then have radio afterwards. On the other weekdays I got in early in the morning and would routinely be in and out of the hospital in half an hour. When I was still up for working, I’d get to start at a relatively normal time.
The radiation technicians made a mask that pinned me in place on the table where I lay during the treatment.
The point of the mask is to make sure you lie in exactly the same position every time, so that the radiation can be targeted exactly as planned. You also get a tiny “stick and poke” type tattoo on your chest to help line things up correctly. So I have this smudgey green dot for life. The mask was really tight, to the point I couldn’t open my eyes. There were two or three technicians in the room getting me comfortable and setting things up. I’d lie on a kind of bench that can move around. They’d put the mask in place, get me to give a thumbs up, and reposition the table. They’d then get out of the room and I’d just lie there while a machine quietly buzzed away. Sometimes they’d play cheery pop radio while treatment happened. I think you could request music, but I never did.
There were lots of conversations about the mask potentially feeling claustrophobic, but I generally found it easy enough to relax and pass the time. I invented distractions for myself. In the last week, when I guess I was most tired and the stress had probably subconsciously built up, I remember having sudden bursts of panic that almost felt like when you’re falling asleep and suddenly jolt awake. But they’d pass almost as soon as they arrived.
Throughout the treatment, and before and after, I had regular check-ins with doctors, nurses, dieticians and a speech and language therapist. The last one was to make sure I was using my mouth and tongue and to help me retain the use of those muscles even when I didn’t use them. I had never stopped to think about the tongue and the throat as muscles until I was given exercises to do to keep them strong.
When I met the team I always took a notebook and brought someone else with me: my wife, my sister, sometimes one of my parents. Particularly early on, I found meeting the team really intense. It was sometimes a cast of thousands, there were a lot of questions. It’s a lot of focus on you, on your health, and it’s of course very serious. In the sessions I tried to summarise and repeat back what people said, asked as many questions as I could, and took the time to make notes. This really helped me afterwards. There were very few times when I felt like I didn’t know what was going on and very few times when I was surprised or had got the wrong end of the stick.
On top of the hospital team, there are all kinds of people you can talk to at the Cancer Society. I saw a counsellor there a couple of times and found that really helpful. They were a real support particularly when the treatment had ended.
Effects of treatment
It seemed kind of wrong that my cancer didn’t make me feel ill at all – and instead it was the treatment that knocked me around! Even though the effects of the treatment slowly build up over time, and are at their worst after treatment, I had to start taking meds pretty much straight away. Anti-nausea meds for chemo and some pain killers.
Eating got hard faster than I had hoped. By the end of week two of treatment my taste buds went wonky and things just tasted weird and unappetising. I guess we have such a strong idea of how something is going to taste that if our sense of taste changes it’s actually quite a shock. Then my mouth started drying out as radiotherapy hit my saliva glands, and on top of that swallowing began to get really sore. The dietician got me on to a drink you can literally live on, Ensure.
I also got really tired. I slept a lot. Apparently insomnia can be a side effect for some people, but I definitely never had that problem! I slept plenty during the day and a full night’s sleep every night. I went for long-ish walks at least once a week, but tried to keep up three or more. I think this really helped.
Taking normal meals out of my life was upsetting. I realised how much of my life revolved around preparing and eating nice meals, going out for dinner, and things like that – including social times. Suddenly all of that was gone, replaced with counting how many Ensure drinks I was getting down per day. To try and keep feeling connected I scheduled in a couple of close friends and family members to come see me as regularly as possible. We’d go for walks or just hang out and talk.
As my mouth filled up with sores and ulcers, and my tongue swelled up, the outside of my neck got drier and rawer. I started losing the hair on my neck and jaw line, where the radiation treatment was having its effect. At least twice a day I applied moisturiser that the hospital provided, to try and minimise the burnt effects on my skin.
Around the end of week five, I ended up in hospital unable to manage my pain, unable to eat or drink because it was just too sore. I’d been struggling to just get the drinks down, trying to time it with when I’d last taken my pain meds. I was really worried I would fall into malnutrition. Everyone was clear that was bad news when trying to recover from cancer treatment!
I forget how many drinks I had to get in to maintain my weight, but I was really missing the mark a couple of days running, so my wife took me in to the emergency department. It was the low point of the whole thing for me, where I was scared and physically really knocked around. The doctor who saw me decided to check me in until they’d got my pain under control and I could get enough nutrition every day. I was lacking sustenance and lacking sleep, as I was being woken up all the time to get regular pain meds into me, and I felt on the verge of panic that there was this tiny window of time between taking drugs and the pain coming back when I could try and drink something. It was hard couple of days.
So, when I was offered a tube up my nose, down the back of my throat and into my stomach, I was actually totally relieved. It was on the third day in hospital, from memory. You use the tube to feed yourself liquids with a big kind of syringe, bypassing your mouth and throat. I’d been told right at the start of treatment that this tube might be needed and how the idea of it might be a bit scary. But honestly when the time came, I just felt relief from the massive stress of trying to feed myself enough to support my own recovery. It was this obvious way to get myself back on an even keel.
Later in my treatment I also got what I knew as lockjaw, which is nowadays called “trismus”. Basically this is your jaw tightening up, making it hard to open your mouth normally. I had to laugh when, after I’d got back into eating, I tried to eat a banana and couldn’t fit it into my mouth!
After the treatment – continuing effects
Once I had finished treatment I still went back to the hospital every couple of weeks to see “the team”, but otherwise I was in the hands of the community nurses. They would basically come to drop off supplies, like dressings for the outside of my neck and the syringe-type things you use to feed yourself via the tube. It’s a time when you might feel a bit at sea, because you’ve got much less contact with medical professionals. I checked back in with my GP and saw a Cancer Society counsellor, to help stay on an even keel.
I had been warned from the start that you feel physically at your worst about a month out from the end of the treatment. Over this time, I kept increasing my meds to manage my pain, plus all the extra meds to manage the side effects of the first lot.
Here’s the diary I kept of what I was taking, to track my doses.
At the time of these pages, I was using the diary to try to avoid overdosing on anything. This was about two months out from the end of treatment and I was still taking the maximum dose of all the meds I’d been prescribed. Later on, as I started easing off all the meds, I used the diary to make sure I didn’t forget to take anything.
I stayed on the feeding tube for nine weeks, slowly transitioning back to drinking and even trying to eat some really soft foods like porridge, and just topping up with Ensure down the tube for as long as needed. When the team at the hospital were all really confident I was going to maintain weight without the tube, the long and gross thing came out. That felt like a really big step.
I spent ages needing to spit a lot, feeling like I couldn’t swallow this thick saliva building up in my mouth. The speech and language therapist pushed me to give up the spit bowl. At least drink some water, use your throat, and try and get those muscles back in action. I needed the push and am so glad she did it.
Then, three months out from treatment, in early August I had a scan to check if the cancer was gone. I didn’t know when I’d get the results of the scan, but figured it could be a couple of days. I got an email from the head doctor with the results on the same day! I no longer had cancer, all signs said. I’ll continue to have regular check ups. I was surprised that this massive positive news hit me almost as hard as the initial negative. Of course, I was very happy, but I was really unable to concentrate and just reeled around for what felt like a week!
In September I took an entire shopping bag of the meds I no longer need to the pharmacy. I cleared out a whole shelf from our bathroom cupboards. I took another month or so to wean off the last of my meds, but it’s now done!
Six months out
Six months from the end of treatment I still have a dry mouth, a croaky voice, and really tight neck and jaw. It might be another six to twelve months before I know whether these things will get any better, but otherwise I feel fine. I’ve been back working full time for months.
I’d say my energy levels are back to normal. I still walk a lot, go to the gym a couple of times a week, and I did a whole lot of skiing when I had the chance.
In my work life I tend to talk a lot, to run workshops and even training courses and the like, and I’ve got to take care not to strain my voice. That’s my current major challenge – my throat gets sore and my voice more and more croaky. And nowadays I might catch up with friends after work and noisy pubs and restaurants do me no favours at all!
I got back into eating all kinds of things, but for a while it was easiest to have soups even if they have chunky stuff in them. Only a month or so back my throat could feel really scratched up and sore if, say, I tried to eat a piece of toast. But it started to recover more and more quickly and now it’s no longer a thing. I still just always make sure I have liquid to hand to help wash down anything particularly dry.
I used to live on spicy food. My tolerance is slowly coming back, just because I was really determined. The first time I accidentally tried something with chilli in it after my treatment it hurt like an actual burn! But I’ve been putting a little chilli in my own cooking for months now and more recently ordering mild curries from restaurants. I don’t imagine I’ll ever get back to real hot sauces and such, but I just didn’t want to exclude whole cuisines from my life.
I drink alcoholic drinks again, but I’ve been toying with giving up drinking entirely. First thing in the morning I always sound like I’ve had a hard night the night before, when the truth is usually quite the opposite!
I still need to work on my jaw, neck, shoulders, to try and get rid of the trismus. The speech and language therapist has discharged me, but she gave me a lot of exercises to keep doing. I use reminders in my phone for this stuff, but feel pretty slack.
I hope reading my story has helped. Talking and writing about my experience definitely helps me, although there’s a balance between being open about this stuff and dwelling on it. I saw some old colleagues this week and recounting my story left me feeling pretty down. But I accept it’s a long slow process to digest all that’s happened in this year, and am very grateful to be where I am now.