Cancer: When “Young” Doesn’t Equate to “Fun”

At My Best Friend’s Wedding – 08.04.23

I originally wrote this with the intention of sending it to a few media outlets, but I never did and it has been sat in my drafts for a while, so I thought I’d just post it. Enjoy!

The English language has some interesting colloquialisms, especially around the concept of being young. Many of them aim to bestow wisdom upon the subject, such as the popular idiom “youth is wasted on the young”. Personally, I find the risqué ones more engaging, like “young, dumb and full of…”. I won’t finish it off, no pun intended.

I feel strange describing myself as young. Not because I don’t feel young, or even that I don’t consider myself to be young, but because I’ve heard so many nurses, doctors and oncologists use the word to describe me, that I have started to associate it with my diagnosis. It is usually said in a tone of pity with accompanying wide-eyed sympathy. People are nice, and I’m grateful for that, but I’m still an adult who craves a more complex response than wide-eyed pity. For I was diagnosed with stage 3 pancreatic cancer at the ripe old age of 28, placing me firmly in the Adolescent and Young Adult (AYA) category of cancer sufferers.

To qualify for this coterie, you must be between the ages of 15 and 35, and you must, of course, have cancer. We don’t let cancer muggles sit at the table with us, just like we don’t let grey-haired sufferers of the malady have a piece of the pie either. It is our way of establishing exclusivity in a club that no one would ever voluntarily join. Previous cancer sufferers are welcome too, seeing as they can contribute to the woes of emotional turmoil that come with a cancer diagnosis in your youth, but that is it. Ok, perhaps those bereaved due to an AYA person dying of cancer can also come along. Perhaps they can invite their parents too. And their dog, who probably misses them dearly. But that’s it – period.

How it works if your age is borderline, or if you cross the bracket during your treatment, I’m not entirely sure. Let’s say that I was 37 years old – would I be turned away from the focus groups? Would my submissions to the AYA magazines be printed off by the editor, only to be scrunched up and thrown into the bin? I’d hope not. Lucky for me, I qualify, being the ripe age of 30 now, and I have a few years left before I must consider my maturity into the next category of cancer sufferers, whatever that is.

I’ve been navigating the world of being ‘young’ with cancer for over a year now. Things have turned out relatively well for me. The first seven months of chemotherapy showed positive results, shrinking my tumour by about a third. Despite this, I was told that the progress was unlikely to be enough for my tumour to be removed in surgery. Due to my age and health, the oncology team still passed my case over to the specialist surgeons for review, in hope that something could be done, even if a full removal was not possible.

The universe had other plans. I woke up following my surgery to the news that my tumour had remarkably been fully removed, but that they had to also take out the entirety of my pancreas. If that wasn’t enough to process, a few other things were removed too – over half of my large intestine, gallbladder, spleen, bile duct, some of my stomach and, for good measure, some of my liver. Two major arteries were also reconstructed, a sentence which still doesn’t mean a lot to me; it conjures up images of a surgeon laden in green overalls but with a yellow hard hat on and a hammer in hand, which emphasises how immature my understanding of surgical procedures is. I wish to keep it that way.

The recovery was harrowing. I wondered if I’d ever feel normal again, especially now that I am insulin dependent (AKA Diabetic). Nearly a year on from the operation, I do feel much better than I thought I would, but everything is very different. My life is punctuated by random abdominal pain and when I walk, I feel tension in the area around the scar, which intricately snakes across my abdomen. It feels strained. Most of the time I manage to forget about it, but it does bother me from time to time.

Sometimes, after meals, the skin around the scar bulges out, making my stomach look malformed. It can feel particularly uncomfortable when this happens, and it is the primary reason that I am slowly adjusting my diet, eating less of the foods which seem to make this happen. Of course, it is mainly carbohydrates, which is easily the best food group, but as I am diabetic, I already view them with suspicion, so it is probably for the best. Carbohydrates are, after all, trying to kill me. As the body breaks them down, they cause the blood sugar levels to increase. When I eat them in the evening, I find my diabetic alarm going off more frequently on my phone throughout the night. It is a sharp alarm noise and it is awful to wake up to. I’m essentially flipping the Pavlovian method on its head and treating myself to not eat carbohydrates in the evening by being woken up by a piercing alarm sound all night. It is slowly working, but carbohydrates are a hard habit to kick. Don’t even get me started on not eating chocolate in the evening.

One advantage of the scar is that getting it out has become my new party trick. It used to be my ability to put the entirety of my fist into my mouth, but I’ve retired that move. I was once at a party where someone did a backflip in front of a room of onlookers, who all burst out into cheers and applause as his feet landed safely back on the ground. “That’s a real party trick,” I thought to myself. I like to think that these days I’d give backflip guy a run for his money. A scar as big as mine is adaptable – one day I was hit by a double decker bus, the next I was attacked by a shark. The scar is all the proof I need. It probably wouldn’t erupt a room into jeers, though. It is more in the ‘interesting’ category as opposed to ‘enthralling’. Doing a backflip is interesting and enthralling… It really is the ultimate move. I don’t attend parties anymore, so I guess it doesn’t matter.

Of the things I’ve learnt from going through a cancer diagnosis, the most prominent lesson has been that people change in life. I found myself having to mould aspects of my personality into a different shape to better accommodate the challenges that I was now faced with. The treatment is gruelling; I constantly surprised myself with how much I could withstand. Chemotherapy, surgery, the feeling that death was always just a few steps behind me. I found a way through it all, but the journey wasn’t smooth. Support from friends and family is essential, but even that wasn’t always enough.

It is difficult to unload your true fears and compulsions onto people so close to you. They are going through it too. In some ways, it is harder for them, as they have no control over the situation. Sometimes, they are pedestrians, standing idle on the side line whilst you face obstacle after obstacle – the pain, fear and devastation which you become accustomed to, but that they never quite understand the extent of. The unknown can be more dangerous to the individual as it presents an inexhaustible amount of horror; friends and family can be locked in limbo, whilst you travel the length of your mental capacity, in search of something to keep you going, no matter how bad things get.

This is why the AYA community serves as such an important tool for people like me. Something that you are commonly told when you are young with cancer is that it “should not be happening to you.” Why wouldn’t it be happening to me? Why not now? Sometimes we draw the short straw, and there is no reason as to why. When I was first diagnosed, I wondered what I did to deserve this. Those thoughts do little to comfort you, and when you must deal with the reality of having cancer every minute of every day, you don’t benefit from having a victim complex about the situation. Stuff happens in life and sometimes, that stuff happens to suck for you in particular. It isn’t easy to keep that level of clarity all of the time, but it is a helpful tool to lean on when going through a hard time, whether that is physically, mentally, or both.

Conversely, there are still people that meet the news with a strange callousness that I don’t understand. The people who hear that you have cancer, and respond by saying “you’re young and healthy, you’ll be fine.” I’m just glad that these people don’t tend to be oncologists, because I think the death rate among AYA cancer sufferers would be far higher if the consensus was that anyone young is invincible and, thus, will be fine. One of the first things I read after being diagnosed with my cancer was that people who are diagnosed with it seldom live to the 5 year mark from diagnosis. No one can prepare themselves for something like that, and to fall back on the notion that age guarantees survival would be careless. Optimism is a powerful tool, but naivety can be destructive. Sometimes, facing up to the reality of the fight at hand helps an individual to push their limit further.

AYA charities provide a space where young people with cancer can speak and relate to each other. In my experience of joining support groups of all ages, where many attendees were over 60, I left feeling more isolated. It reinforced a feeling that what was happening to me was unjust. AYA reminds you that you are rather unremarkable and that there are others experiencing very similar feelings to you. It makes a huge difference.

Further to this, many cancer charities are set up to support a traditional person with cancer, but not anyone else. I commonly find opening hours of charities to be Monday – Friday, 09:00 – 17:00. Although I understand why this is, it isn’t helpful having a workshop or support group in the middle of the day. I’m not retired, and I can’t afford to be signed off work forever. The AYA charities are better equipped for this, and I have attended many evening sessions with them, where I am not so constrained, and having to beg for time off in the middle of the day to attend an event.

Despite all of this benefit to young cancer sufferers, AYA charities go relatively unnoticed. Because of this, I wanted to write a piece on how much I appreciate their existence, and how they have helped me through some tough situations. In the UK, I have attended a few Shine events, and am looking to join their summer meet up in London now I am living back here, and in the US, I have had multiple pieces printed in Elephant & Tea’s magazines, as well as joining some very interesting events which they run; some of the stories I have read in their magazines have really resonated with me, and I find myself going back to read them frequently.

So, although you may not be an AYA cancer sufferer, I’m sure you have experienced the negative effects that cancer can have on an individual, whether they fall within the AYA category or not, and on the people around them too. In future, if you are looking to raise money for a charity, consider seeking out one of these smaller AYA charities and doing it for them. I know that they’ll really appreciate it, and you’ll be contributing to a service which makes a huge difference to people like me.

Friends & Family

This morning my mum and I received a surprise visit from a family friend bearing flowers. We spoke briefly at the door, and some tears were shed. It perfectly demonstrated to me how a bad situation can bring out the best form of humanity in people. I felt immediately inspired to write.

The experience with cancer has been traumatic in so many ways and reliving some of the most painful moments on The Road to Diagnosis series has been hard. What shocks me is the incredible response from people to these stories. We have an amazing ability to empathise with each other’s struggles, and I get to experience the best part of this human trait daily through your heartfelt words.

It feels like the right time to name and shame some of the actions of my friends and family over the past few weeks. These fiends have made it their sole objective to do everything possible to make me feel so lucky, in such an un-lucky situation. Many of these situations have resulted in me becoming a babbling mess and falling into the ever-so-annoying “you shouldn’t have” and “I can’t accept this” tropes. It can be hard to accept the generosity of others, even when those people are your family and closest friends. The least I can do is recognise some of these actions, and I hope you enjoy a positivity-filled blog post for a change.

Firstly, I would like to introduce you to Lucy. She is a 12-week-old Miniature Dachshund and the newest member of me and Anna’s family. I first met Lucy when Anna walked into my bedroom on Wednesday 24th November and asked me if I could come downstairs to help with ‘something’. This should have perhaps aroused a level of suspicion in me, but my mind was elsewhere. Chemotherapy was starting on the coming Saturday and my mind was racing. In response to the anxiety, I had decided to sit down on my own and try to write about how I was diagnosed to alleviate some of the negativity that I was feeling mentally. It was the inception of the blog, and those words would eventually morph into the first Road to Diagnosis entry.

I followed Anna downstairs, entirely in my own head and reliving some of the tough parts of the cancer journey thus far. To my surprise, my brother Alfie and his girlfriend Kat were sitting in the front room when I walked in. My dad was also sitting there. Everyone was looking at me expectantly. “Is this an intervention? Do these people think I’ve been diagnosed with alcoholism?” I thought. As I took another step, I realised there was a small box on the floor. As I looked down, I saw beautiful little Lucy plotting her escape. I think the video speaks clearer than any words I could write from this point.

I haven’t watched the video as I cannot stand the sound of my voice, but I have seen the still images of my dad laughing to high heaven. He processes emotion in a different way to the rest of us if you couldn’t tell. Lucy was organised by my wonderfully thoughtful sister Becky and paid for by the whole family and some very close family friends. She was to be my chemotherapy companion, and she does a fantastic job of sitting and looking cute in the car when I am picked up from the hospital. I have shown the nurses pictures of her and threatened to sneak her onto the ward in my bag. They reluctantly encourage me not to. I still think they’d let her stay if I did though.

The next group of people in the spotlight are my incredible friends. Upon learning about a difficult financial situation with work, whereby I would only be receiving full sick pay for 4 weeks (the diagnosis alone took 5 weeks), my friend Finch organised a collection. They were trying to take away some of the external stresses that come with a cancer diagnosis; the things that you would hope could be put to the back of the mind in this scenario. Unfortunately, financial problems quickly become a hot topic with such a diagnosis, but that is an entirely different article.

I needed to use the money to buy something significant, as I felt so uncomfortable accepting such a gesture and spending it on something benign. So, the money bought a ring which Anna now wears on a rather significant finger on her left hand… It will forever remind us of the kindness of a group of people who have always been there for me, and who I love with all my heart.

My friends then organised a sort-of-surprise engagement meal for me and Anna, which was lovely. It was on Monday 22nd November, the same day that we packed up our lives in London to move back home with my parents for me to undergo treatment at The Christie. We had only recently purchased our flat in London and had enjoyed decorating it and making it our home. We were sad to leave it behind and packing away our things so soon after moving them in felt wrong. It emphasised the fact that our lives were changing, suddenly and drastically. The meal provided another perspective on the situation; that we had the support of people we loved around us, and that we were closer to those people for a while (as many of them aren’t hip Londoners like Anna and I).

Although cancer is a destructive and horrible thing, I have it to thank for all the above and far more. Whether it kills me or doesn’t, it has provided me with an opportunity to gain such a valuable perspective on the world that will remain with me forever. The way I interact with people has irreversibly changed. But you shouldn’t need a cancer diagnosis to gain such a perspective. If you feel gratitude for a friend, tell them. When you know someone is going through a hard time, set a reminder on your phone to message them each day and tell them something about them you love. Be the person that you would want other people to be for you.