We’ve got five years, what a surprise

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Today I became a statistic. A pretty important one.

It’s been exactly five years since I followed the dental nurse to a room high above London at Guy’s and St Thomas’ hospital, and waited for the dental specialist to tell me the words I wasn’t expecting to hear:
‘You have cancer’.

On that day, 7/08/2017, I first became a statistic: female, 29, diagnosed with Osteosarcoma of the jaw, a rare form of bone cancer. Only 50% of people diagnosed with Osteosarcoma on that day would survive to five years.

Five years becomes a milestone in the minds of anyone with cancer. The word ‘Survival’ is thrown around and spoken about in terms of ‘survival rates’, meaning how many people are still alive at the 5 year mark. We all dream of getting to that coveted day. That we’ll be through the worst of it, ‘all better’, healthy, cancer free. Because once you make that five year mark, you become a success story, written into the research papers. But that’s where the stories stop, at that statistic.

If I am reported about in research, I guess I will be counted as a ‘five year survivor’. But the truth is that I am on my third diagnosis, my cancer incurable, my last grasps of treatment palliative, in the worst pain I’ve ever been in, and my tumour toeing the line of briefly being stable (maybe)…

It feels weird. 5 years with cancer. Half a decade. A… success story…?

In many ways, yes I suppose I am. I’m living the live I dreamed about as a sad little creatively misplaced Indie kid. I’m so happy, I have my actual dream life and I love every day of it. Except for this overarching thing that seems to be taking up more and more of my good days.

Survivor is a strange word in the cancer community. It’s a term often used to describe those of us still here, though it doesn’t make a lot of sense. My cancer will kill me, I will die young, but I’m not quite dead yet. So where do I fit into the survivor narrative? Do I never get to be a survivor? Or do I become a survivor on day of diagnosis until I die? It’s not a word I want part of anyway, I hate all these terms people come up with to try and define me by my cancer. I’m not a cancer anything (sufferer/survivor/fighter/etc), I’m just Jen.

Those of us with cancer are forever struggling with the outdated language society and the media seem to grasp for that no longer fit and often just make things worse. I came across a new one the other day I’d never thought about (I’m as surprised as you are that one got past me for so long), which is that we refer to someone being dead by saying they’re late… Late! When I don’t turn up to something after I die, I can guarantee it won’t be due to any poor time management skills on my part. It will be because I’m literally dead. Not late.

And as always I’m brought back to the stupid old fight narrative which holds society so tightly, this obsession that we are all orchestrators of our own fate, that we are in control of whether we live or die by how much we ‘fight’. And that we are losers when we die. That maybe we should have just like… tried a bit harder not to die… Absolute insanity. Unfortunately I can’t control how well the treatment works. All I can control is how I react to my reality and the situations I find myself in. And some days that looks like lying in bed crying as I try to work out how on earth I’m meant to survive through the pain and feel terrified over how much worse it’s going to get. Other days it’s taking 4 Oxycodone after not having slept for weeks and going to the pub/on a date/to a show/for a walk – I checked with my pain team if I could drink on my Oxy and apparently I can, as long as I don’t go too crazy. Deal (ish). Priorities.

So today, I guess I am a success story. Someone who has survived to 5 years. One of the lucky ones. Proof that it can be all right. Even thought it’s kind of not and things are going downhill. I don’t know if I wish I’d known that this is what that ‘success’ could look like, I guess ignorance brings hope.

But tonight I’m going to see one of my favourite musicians – Joe Jackson. I first saw him play in Sydney, 2003. I was 15. I didn’t know many of the songs, but since then, I always called it the best gig I’d ever been to. At the end of my first term of university back in a small country town in Australia in 2005, for some reason I said I played bass guitar (I guess violin and piano weren’t considered super cool back then). That gave me the holidays to learn how to, and I did so by playing through Joe Jackson albums. I got to see him again in London back in 2019 and that time, I knew all the songs. Sometimes you wonder if you build things up in your mind and a repeat is only ever going to fall short of the mark… But it didn’t. I was just as impressed as I had been the first time. And I expect seeing him again tonight, it will be just as good. Not a bad way to celebrate still being alive, despite the universe having other plans. Today I guess I do feel like one of the lucky ones, still here, still able to have these magic moments.

In fact, on Monday I get to see my brother and niece who are coming over from New Zealand for the Commonwealth Fencing Championships – Fencing runs in our family and most of us have done it at some point. So it’s going to be fun to go see them and also get the chance to go watch and be back in a Fencing competition (but without the pressure of competing). More beautiful moments to stay alive for. There are certainly a lot of them.

I’m off to listen to Five Years by Bowie, then to start preparing for tonight’s gig. What a time to be alive.

5 Comments Add yours

  1. 🥰💕 I hear you Jen. I know exactly what you mean about the infuriating outdated language! Enjoy your evening and tomorrow xx

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  2. claire93 says:

    You are so much more than a statistic, Jen! You’ve been seizing every day and I am pleased to read you plan on seizing some more ^^ Have fun “steppin’ out” tonight at Joe Jackson’s gig (if I tell you I saw him in concert when at uni in the 80s, that’ll show my age) and even more fun when you get to spend time with family this coming week.

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  3. violetlavender8 says:

    I have worked in pharmacy for many years regarding pain meds. I hope you don’t take this to personal but do you have meds for anxiety? Either Ativan or Xanax are excellent for helping the oxycodone do its job. In the U.S it comes in tablets, liquid or a gel that can be made to rub on the wrists. The gel is not as effective as the others. From your posts I realize you can have tremendous difficulty in swallowing sometimes. Most pain meds and others can be put into a empty capsule and inserted up the bum if necessary. Not a pretty thought I know, but who the he*l cares if you get relief faster. You, young lady, are more than a 5 year survivor. You are a crusader helping others on what treatments may be effective for others. There is also what we call a PCA pump that uses an IV line with a cassette that is programed to release a set dose of pain relief plus a bonus as needed. You can still be in our home or wheeling around town because set up can be very portable. There is a safety feature that lock up the dose if you try to exceed doctors recommendations.

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  4. Ash Ross says:

    Our society needs to ‘name things’ in order to classify it. You don’t need to be classified!! You are Jen. Absolutely! You are loving your Indie London life and I love hearing about it. I hope you have an amazing time at your concert and get swept up in the music and taken away even for a moment into your beloved land of music. I’ve always been in awe of your musical ear that can pick up an instrument or hear something in a melody that others don’t. Have fun!

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  5. Stef G. says:

    I’ve been following you on Instagram since my tongue cancer diagnosis and I just now realized we have the same diagnosis date. I have always loved reading your posts, you are such a talented writer and witty and have such a great energy about you. Anyway, thank you for sharing your story with the world. I’m wishing always for the best possible outcomes for you.

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