“My teenage cancer experience” – by Cardiff Uni student, Ellie Philpotts

Today’s We Are Cardiff entry features Cardiff uni student Ellie Philpotts, talking about her experiences as a teenage cancer survivor.

black and white photo of Ellie Philpotts

There are many taboos in today’s society. Words that have entirely negative meanings, or just hush-hush connotations. Words we don’t talk about. Words that evoke feelings we don’t want to feel. Which, in some ways, is understandable. Maybe it makes sense to block some images out. Perhaps that’s a coping mechanism – if you’re not thinking or talking about it, it doesn’t exist. That might even be the recipe for more peaceful living. After all, who WANTS to be haunted by unpleasant things?

But there’s one relatively taboo term which can’t be avoided, however hard you try. And that’s cancer.

You might be a person who thinks, ‘What’s taboo about cancer?’ It is undeniable that it’s everywhere. Pink ribbons symbolising breast cancer; girl power in the form of Race for Life fever dominating the country; moving TV ads; Macmillan billboards in shopping centres, usually shouting the message, ‘No one should face cancer alone.’ Yet despite this, it’s still a topic a lot of families don’t want to delve into. So much so, there are even other terms for cancer – ‘the Big C’ and ‘the C-word.’

To be honest, those colloquialisms make me cringe. But I also see where their users are coming from. Cancer is connected to such horrors that it does seem partly logical to want them masked.

For me though, cancer has remained strikingly unmasked, as it’s become an integral part of my identity. And I’m now happy with this status!

I’m 19 now, healthy (if we ignore my inability to attempt any sport without tripping over 300 times), and in my first year studying my dream degree at Cardiff University. Life is running pretty smoothly for me, but this hasn’t always been the case. I was diagnosed with cancer when I was 15. My 2011 began with a bang – in the form of Hodgkins Lymphoma, which NHS Choices describes as ‘an uncommon cancer developing in the lymphatic system, a network of vessels and glands spread throughout your body.’ It continues, ‘Hodgkins Lymphoma is a relatively aggressive cancer and can quickly spread through the body.’ ‘Oh dear’, you may think. ‘That doesn’t sound too good.’ Well, I suppose it doesn’t, but to cut a long story short – I beat it. I guess I’ll have to tell you more though, considering this is a piece on my cancer story, and I’m working at making my text fit the title in at least some way.

In summer 2010, my symptoms began, as itchy hands and feet, not serious enough to warrant a doctor’s visit. Before long they’d accelerated into more serious stuff, which by January was intense breathlessness; drenching night sweats; fatigued lack of energy; no appetite and a lump in my neck. Even walking around my house would leave me panting for breath and overall my breathing sounded horribly laboured. The night sweats were unusual for me – I’d always tried to avoid PE like the plague (usually without fail, but I still didn’t exercise enough to break out in sweat.) So January 2011 saw me transport myself to my GPs three times. I was presumed to have the flu, a winter virus or glandular fever, which has symptoms similar to Hodgkins, so was given an inhaler and tablets, but my condition only seemed to worsen. So on 20 January I was finally hospitalised, where scans indicated a mass compressing my windpipe, and that the problem was too big for them to deal with. So two days later I arrived at my ex-second home, Birmingham Children’s Hospital.

BCH exposed me to my medical world – neck biopsies; bone marrow aspirates (checking if cancer had spread to my spinal fluid); PET Scans and drips, all before official diagnosis. This eventually came on Friday 28 January, when I was doing homework in the Teenage Cancer Trust (TCT) unit, in the form of Hodgkins Lymphoma Stage 2B, meaning it’d spread from its original site, and comprised of a 9cm long, 6cm wide mass wrapped around my windpipe then two smaller lumps.

So January-May threw me into a new sphere, of chemo, steroids, scans and plenty of new experiences, both within the ward and beyond. I went on my first TCT trip less than two months after diagnosis, which included hanging out with Roger Daltrey and The Who before their Royal Albert Hall show in aid of the charity. Since then, I’ve been on numerous trips with my cancer friends, from sailing with the Ellen Macarthur Trust to long weekends of fun Find Your Sense of Tumour conferences at Centre Parcs, to meals with my Birmingham group. To look on the bright side of cancer (there is one!!), it’s a great way to make so many new friends, who understand what you’re going through. Although I finished treatment four years ago next month, I’m still attending charity events and meet-ups – they can’t get rid of me!

Of course, post-treatment isn’t solely fun and games. There’s the constant thought that it may come back, and my hospital group has lost a few members. Thousands will recognise one of them – Stephen Sutton MBE, who died last year having raised nearly £5million for Teenage Cancer Trust, with over 340,000 people donating. Stephen was one of the first cancer friends I began speaking to after diagnosis, and was a bright, funny and positive member of our group. It was absolutely breathtaking to see the entire nation be similarly sold by his story and inspiring nature, and for that volume of money, 454 per cent of his original target to be raised.

Cancer is literally formed of haywire cells, but figuratively of highs and lows, so here are my top 10 tips for anyone – patient, survivor or curious reader, regarding the whole cancer universe!

  1. If in doubt, check it out. It’s probably not cancer, but unfortunately the disease is getting all the more common. So if you’re unsure, there’s no harm in going to the doctor’s. Persistence is key – my symptoms could’ve been longer dismissed as asthma or glandular fever, so if I hadn’t kept going back, my prognosis would’ve been worse.
  2. Life gets better. It may seem like you’ll be confined to the ward forever and a day, but someday it’ll be a distant memory.
  3. Cancer can actually improve your life. I wouldn’t have thought it, but now I’m genuinely glad I had it. For me, I may have lost hair, some time in school and a peace of mind regarding health, but I gained incredible opportunities; inspiration; friends; experiences and confidence!
  4. There are people out there who understand what you’re going through – even if it doesn’t always feel like it. Here in Cardiff, I’m now also part of Shine, for slightly older patients and survivors. TCT were my original group, but Shine is also fab!
  5. Take each day at a time. Cancer can be overwhelming business, one where it’s easy to panic about your future and whether you even have one, so focus on the here and now – it makes daily life easier.
  6. Make plans. I know I just said to take it slowly, but working towards a goal – a holiday, party or just nice day out to mark the end of treatment or Cancerversaries (anniversaries of dates like diagnosis or remission) is motivational – plus you deserve a treat!
  7. Say yes to things! You may be surprised at just how many opportunities cancer brings. Work experience; chances to break your comfort zone and try new things such as charity abseils; extreme sports on Climbing Out camps; sailing; meeting celebrities; performing in London; even realising your dream career via cancer. Nothing to lose by trying new things!
  8. Don’t neglect your family or shut yourself off completely from the outside world. They may not understand exactly how you’re feeling, but it’s hard on them too. They’re there for you at your best and worst!
  9. Don’t feel guilty for taking time for yourself. Cancer is tiring business, and you’re at the centre of yours. So listen to your body and rest!
  10. Your illness doesn’t completely define you. You’re still YOU. Just perhaps an improved version – having being made more emphatic of others, or now realising the importance of living life to the full.

***

Ellie Philpotts is in her first year at Cardiff University studying English Literature, Journalism and Media. She is  a teenage-cancer survivor; is obsessed with travelling, and her favourite cities outside Cardiff are being Sydney, NYC, Nashville and Paris. Her ‘likes’ also include general Britishness, cups of tea, exploring, attempting to write songs, journalism, Italian food, finding new places, going out for dinner and taking photos – of everything. She is not a fan of maths, mashed potato, narrow minded people, her phone constantly running out of memory for photos, or people who are mean about Taylor Swift. Follow her blog or Instagram.

Photo by Ellie Philpotts

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2 responses to ““My teenage cancer experience” – by Cardiff Uni student, Ellie Philpotts

  1. Pingback: Welcome bloggers of the world to Cardiff for #Traverse16! | We Are Cardiff·

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