Navigating Cancer | Guest Blog

04 August 2023 — david-allen

When I was first diagnosed with metastatic malignant melanoma back in 2016, I could have done with a map and not just because I was told over the phone while I was away for work in Wales, a good three-hour drive away from home in Cornwall. Even once I got past the initial confusion of finding my way from the relatively calm A-roads of normal life to the, frankly, hectic chaos of the Cancer Highway, there was a whole new world to navigate, and it felt like I was driving backwards in the dark with no headlights on a foggy night. 

The first manoeuvre I had to master was frequently changing lanes between work, breaking down, being strong for my kid (18 months old at the time of diagnosis and thankfully unaware of most of what was happening), trying to understand what was happening inside me and fielding a host of questions from anyone I spoke to about how things were going (along with the mandatory had tilt). The speed with which I had to move between lanes was dizzying but, much like those old computer games, once I got the hang of it, I managed to get into a rhythm of sorts. 

Next up was the ring-road of Radiotherapy which followed some hastily arranged surgery to remove a tumour the size of a grapefruit from my groin. 20 cycles over four weeks was enough to make anyone dizzy but when you exit that final roundabout it is a sweet feeling, and you get a great excuse to visit the services for a long rest afterwards which is always nice.  

From pre-surgery to radiotherapy and beyond I was extremely fortunate to be driving alongside a wonderful navigator in the shape of my Cancer Nurse Specialist (CNS) or keyworker. The brilliance of this support was that, firstly, they did what you expect them to do in terms of guiding you through the medical elements and decision-making process. Then, like tuning in to your favourite song on the car radio, they did the unexpected and helped me through a whole host of other issues like poor mental health, issues with a lack of weight loss (and body dysmorphia) and facing up to my own mortality on a number of occasions. The CNS community are like navigators with excellent taste in music, a bag of pick’n’mix and sage advice to impart when you’re stuck in traffic. 

In the modern world, we sometimes turn to technology for navigation rather than traditional maps and the Sat Nav of choice for me was the MySunrise app. I didn’t get access to this immediately but once I had downloaded the app, I was instantly comforted by the specificity of the information that I could tailor to my own diagnosis, my own cancer care provider and my own particular quirks of anxiety. Having a pocket guide that you can programme to own your needs and doesn’t expect anything back from you is a huge help and a massive reassurance when things knock you back along the way. 

Somewhere along my journey, despite all the help, I still took a few wrong turns and the cancer came back to wrap itself around my pancreas. In the driving analogy I guess this is the bit where you wait by the side of the road for the AA to show up and tow your flaming wreck of a car to a garage in the hope that a miracle can be performed by an overweight man in overalls. In my case, there was only one garage in the country willing to even look at my car and that happened to be in London which meant a number of petrol guzzling trips up and down the A303 to visit consultants, be scanned, deliver me for surgery and then pick me up two weeks later. I was fortunate enough to be given some financial support by the Plymouth Cancer Support charity to cover fuel expenses which made a huge difference in taking away stress and anxiety at an already stressful and anxious time. 

The final part of my journey (for now) was getting some physical support in the shape of physio and I guess this was my MOT before getting out on the road again. This involved some intervention from the NHS and, yes, a bit of treadmill action but most of the physio sessions were actually spent sorting out my relationship with my post-operative body. Having had a number of organs removed, I was told that my brain was lacking in certain triangulation signals that meant I could lose balance, black out or just feel a little wobbly. I was amazed at how just explaining the relationship between my brain and body could help answer questions that I didn’t know I needed answers to and give me back confidence in my physical ability again. 

Everybody’s journey through cancer will be different and sometimes the traffic will be heavier than others but if you get a good navigator, stock up on snacks and keep the radio tuned to something positive then you won’t go far wrong. But, like any journey, you’ve got to look after your car and you can’t account for other drivers so always watch out for those side roads and keep an eye on that oil gauge… OK, I think the analogy has run its course now but hopefully that’s helped someone out there. If you like the writing style and want more details then you can always buy my book, ‘My Big Toe Is Killing Me’, with 20% of profits going to St Luke’s Hospice – Available exclusively via www.rolandmonger.uk for the low, low price of £6.99.