Well… Here we are again…

Well it’s that time of year again, isn’t it. Is it? Really? Like really?! Every year actually is shorter than the last, right? It’s not just me who looks back and wonders where the year has gone…? Though to be fair I suppose a lot has happened to me in the past year. On New Years Eve last year I had a bath, drank one Guinness (the only alcohol my chemo affected body could handle) and went to bed well before 12… This year I went to a 1920s style prohibition party (I’ve certainly got the haircut for it at the moment!) and stayed out all night dancing. How times change.

I’m stuck between this ‘new year new me’ thing and ‘new year same me’. I like and dislike them both. I really like spending this time looking back on the year that has been and looking forward to what is to come. Something about that makes me feel in control. And I’m always a fan of a nice clean canvas just waiting for me to splash (or spill) paint all over it, while the previous year’s canvas can sit packed up in the cupboard. At least that’s what I used to think I could do.

I thought when I got cancer that I could get it treated, cut out, then I would just slot back into life like nothing had happened, leave it a thing of the past that I only occasionally refer to. Do the same thing I had done to every other year. But as past years seem to keep cropping up in each new artwork, so do the memories of cancer. And I mostly mean this in a good way. I’ve learnt a lot from it and I’ve gained a lot – so many amazing friends, so many examples of courage from people, so many shows of how wonderful humans are.

But I am also a huge advocate of change. Personal change. I am allergic to monotony. I love to try new things, have new experiences, meet new people. I don’t like life to be boring, and in that sense I try to see each day, week, month, year as a potential new me, a whole new set of opportunities. Constantly adapting, growing, looking for the next challenge or adventure.

But there is also a lot of pressure these days on always trying to be the ‘best you that you can be’ and ‘living your best life’. I’m learning to not give myself such a hard time if not ‘every day I’m hustling’. Wait Jen, do you mean actually just have a balance?! Revolutionary!

I do still feel like I’m in limbo at the moment though… not quite functioning at my full capacity, still recovering from chemo and surgery, and waiting for the next surgery date when they will try to give me some new teeth. I guess of late I’ve been a little bit preoccupied with how I look, waiting for the day when I look a bit more normal. And indeed I’m starting to get back to ‘normal’ but I still have this big reminder of cancer on my face when I look in the mirror, and I have to explain to new people I meet why I look a bit odd. I’ve been around other cancer friends when they’ve been discussing when the time is right to tell new people what they’ve been through. For me it has to be straight away. At the moment I can’t really hide it all away – I hope when I get my shiny new teeth, that will be a lot easier to do should I wish to, at least at times. I see all these amazing beautiful girls who’s coping strategy through cancer is to put on bright lipstick and make themselves look glamorous (I swear everyone looks great bald btw). I haven’t felt like I’ve been able to do that, I’ve more wanted to hide my face away than show it. Sometimes I’ve felt sad I couldn’t be the glamorous bald girl. But I’ve never been one to conform to the norm anyway, so why start now.

It’s funny how we see ourselves in a certain way and inadvertently use confirmation bias to tell ourselves it’s the case. Like… If we’re self conscious about our weight and someone says something about your clothes you’ll immediately think they’re saying your clothes are too big or small. If you think you have a big nose and someone mentions your nose you’ll assume they’re saying it’s big. If you have a prosthetic leg and someone talks about legs you’ll think that’s what they’re referring to. Even if they’re meaning the opposite one.

Shall I give you an example? I met a lovely girl a few weeks ago at a party and she came up to me and said I was really beautiful and asked me if I had done any modelling because I have the face for it. Ha! I thought our mutual friend must have told her about me and she was just being nice. The good old ‘you look good, considering…’. I told her that was very sweet of her to say, considering how odd my face looks etc. She looked at me confused. She had no idea. She wouldn’t have even noticed had I not met her compliment by saying I look strange. She was being genuine (obviously we’re now friends, I love her). That was a bit of a wake up moment for me. Get over it, Jen.

I know I sound a bit vain talking about how I look, when I am very well aware that I honestly don’t look too bad. I know how far I have come and I know a lot of people have it much worse. If I weren’t committed to true transparency through all of this, I probably wouldn’t talk about it so much. But I want to talk about how hard it is to come to terms with your face suddenly looking so different through no choice of your own. How people do tend to ask what happened to your face, how every time you look in the mirror, there is a reminder of cancer. I want other people who have to go through similar things to know they’re not alone. Anyway, I’ve talked about it enough, I don’t need to talk about it again but my point is that I’m going to try and give it all up. And hopefully soon I’ll have new teeth and with it, I will be able to let go of my final reason to need to tell people why I don’t have any. I hope with my new teeth I will also find my freedom.

Gee, then I’ll need to find something else to worry about! Maybe I’ll start talking again about how I can’t breathe through my nose… Did ya know? 😛

Ok so it’s a new year. To be honest, it doesn’t feel much different from the last. I follow a girl on Instagram who is disabled and she talks about struggling with the ‘new year, new me’ thing because it’s a constant reminder that able-bodied people can just change themselves and what they’re doing at whim every year, when it is a lot harder for disabled people to do so. They can’t just decide to stop living their current life and pick a new one, they have to live with their reality. I had never thought of that, had you? I suppose ‘new year, new me’ comes from a place of privilege.

This new year I’m going to keep thinking about what I want to do, who I want to be and how I want to live, and I’m going to hope that 2019 is better than the last 2 years have been. But I’m not going to put pressure on myself to do certain things just because it’s a new year. I am going to keep trying to be my best but also allow myself days to just chill out and not achieve anything. We’re very much an all-or-nothing culture these days, but let’s all just try and do whatever we can yeah? And don’t give ourselves too much of a hard time if we don’t go to the gym every day or if we drink alcohol or eat red meat. Resolutions are just an excuse to let yourself down when you try to take on more than is sustainable.

This year (and every year, for that matter), let’s just aim to find moments of joy wherever we can, hug our loved ones, extend an arm and a smile to a stranger, and be kind to ourselves. This is our year, in whatever capacity we are capable of it. If you’ve been waiting for a reason or a time to do something you’ve wanted to do, just do it! Leaving things until the new year is just an excuse to put them off, so just take the first step right now, whenever you are reading this – stop expecting too much and stop making excuses.

Happy New Year everyone, just keep being wonderful you.

They say it’s my birthday…

So I turned 31. That’s a thing.

I remember when I was a teenager thinking 31 was positively ancient. In fact, I have friends in their twenties and they think 31 is old. ‘Oh but you don’t seem like you’re 31’ they’ll say. What does 31 seem like? I must admit I do tend to see (some) people in their early thirties and feel like they’re older than I am…

Though I feel like I have aged considerably due to the events of the past year – mentally, emotionally and physically. I think a lot of people feel like they ‘grew up’ quite a lot when they had to deal with something big. And let me tell you, chemo definitely prematurely ages you! (I just groaned when I sat down).

Birthdays have always been an important thing to me. Both mine and also other people’s. Why? Not sure. I just think everyone should get their day. And I just like bringing everyone together (to celebrate me, obvi). But this year I kind of wasn’t feeling it. My 30th was a bit of a non event last year. My parents were visiting and did their best to make the most of it, but I was at my worst point in the whole of my chemo. My lovely mum cooked me a roast which I threw up, I collapsed in the hallway trying to get to the living room, I went to bed super early, exhausted from the day (we did watch ‘The Commitments’ though which I love! And my housemate took the day off to hang with me – Love you Owen!), and since I had neutropenic sepsis (no white blood cells thanks to chemo) I ended up in the local hospital Emergency department the following day and had one of the worst and most painful weeks of my life in hospital. So. Much. Pain. Then shortly after that my boyfriend broke up with me out of the blue in a not very nice, pseudo gas-lighty way.

What was usually my favourite month of the year was by far the worst. (Though I must say I had a lovely Christmas with Ma and Da).

So I wasn’t super excited about it this year, like maybe my bubble had been burst. I wondered if at 30, the shine had just worn off. But that didn’t stop me having a bit of a party. And hey, December would need to work pretty damn hard to be worse than March/April were this year.

In the end I had a fantastic birthday and celebration. I went to my local pub with a few people I love. Those people really showed me how amazing my life is and how lucky I am to have them. And the amazing Shiri got there early and had decorated the area in the pub with balloons and banners and made me an amazing coffee cake. And the owners of my pub got me a lovely card and my first Colin the Caterpillar cake ever! And the pub cat patterned my arm with scratches when I tried to get cuddles… And we danced and we talked and we drank and we laughed. Perfect night, really!

And now it’s getting towards the end of the year… Wow. What a lot has happened in the last year. And in the last few years for that matter.

My hair has been long, short, and entirely gone. My eyebrows have been thick, thin and non-existent. I’ve been in relationships, I’ve been single. I’ve lived in different countries. I’ve travelled. I’ve had countless friends, some which have come and left and some (the important ones) which have stayed. What’s that quote? People come into your life for a reason, a season or a… Um.. Lifetime?

I’m still not out of the woods with this cancer thing. Of all the people under 40 in the UK who were diagnosed with osteosarcoma on the day I was, only about half of us will survive the next five years. That says nothing about me or my case whatsoever, but it does make you think. What if I didn’t make it five years? If I died before I were 35, would I look back and think I were rehearsing for a main act that was yet to come?

Not for a minute. I don’t feel like I’ve wasted a year, a month, or  even a day (ok maybe a few hungover days have been spent bingeing on Netflix but hey, we all need rest days!)

I’m proud of the things I’ve done and the people I have brought along with me. In my adult life I’ve lived in 3 brand new places where I didn’t know anyone. I’ve had lots of different careers, trying things on for size and trading them in for new things. Two degrees, corporate jobs, government jobs, working in the airline industry. I’ve been a musician, a writer, an artist, a journalist, I’ve won horse riding competitions, I came 3rd in the NSW Novice fencing championship – a lesser known fact about me (btw that’s sword fighting. I know I’m from Australia but I wasn’t in a competition for building fences), I can salsa, I used to do rock climbing, and at school I was a swimmer. I’ve loved, I’ve lost. I’ve known when to walk away from things that don’t serve me, and I also haven’t. I’ve been good at things and bad at things (I’m learning how to play to my strengths). I’ve made new friends, I’ve lost old friends. I’ve helped people and I’ve hurt people. I’ve been selfless and I’ve been selfish. I’ve exercised religiously and I’ve gone long periods without doing any. I’ve drunk too much and professed my love for anyone near me (never any harm in professing love). And I don’t regret anything.

See this is why I love birthdays, I can just talk about me and you all have to listen! Jokes, that’s not what I’m getting at.

What’s that quote that life is what happens when you’re busy making other plans? No I don’t want to die in the next five years (please) but if my time were up, I don’t think you would say I hadn’t achieved much. But you know what? I haven’t ‘achieved much’ in the BIG sense of the word. I haven’t married the dream guy and had kids (thank goodness, not for me) – I’ve got friends who think they will have failed at life if they’re not married by my age. I’m not on track to be the CEO of a company. I’m not a published author (yet!). I’m not in a famous band. We’re always searching for something else. What’s with that? I have no idea what I want to be when I grow up. And that’s fine. (Actually I kinda do these days, anyone want to pay me to be a writer? Kthanks).

Life is a big messy ball of uncontrollable energy (both potential and kinetic). Why are we striving for some unobtainable idea of perfection? Some pre-conceived, pre-determined mould that frankly, just doesn’t really fit? And if we got that job, car, wife, house, will that mean we’ve made it? Will we then be happy?

How many of you could look back on your life and think that you’ve really done the best you can? And if not… Do you maybe need to redefine your ideas of success? Because I think you’ll find you’re doing pretty well. Someone else might dream of your life. Or if you’re really not ok with it, it’s never too late to make a change. What’s that other other quote? (Someone should pay me to paraphrase quotes, like a slightly misguided inspirational quote generator with terrible referencing skills… ‘and she said she had two degrees’ I hear you exclaim): The time will pass whether you do the thing or not so just go do the thing! Sure we have to do things we don’t want to in life (that champagne won’t pay for itself) but are you being the best you that you can be? Can’t that be your measure of success?

It’s taken a long time to learn to be ok with myself. I’m getting there. I won’t use the word ‘love’, I’m not that self obsessed (she says in a post talking mostly about herself) but hey, let’s cut ourselves some slack. Life isn’t perfect and that’s beautiful. Makes us interesting. Our imperfections are something that set us apart from everyone else. And from robots too, for that matter! This is our humanity! Being different! NOT fitting into a mould!

Why do we look at getting older like it’s a bad thing? Did you know that studies in happiness have shown people to be at their happiest when they are in retirement. That’s like 65+ (or probably 80 by the time I get there!). So we’ve all got that to look forward to! Or to those of you who are already there, bloody good work, you’ve earned it.

I have friends who are unlikely to make it to 40, or even 35, or even… 30. How do you think they feel when people whine about getting a year older when they know their years are limited?

So can I really lament the passing of time and my youth when really it is an absolute gift that I am lucky to have?

I spent my whole twenties saying I was 21. Holding on to that age for some unknown reason, but I would MUCH rather be 31. I think every year gets better. I’ve never mourned past times or dwelled in the past. Always onwards. The best is always yet to come.

So at 31 I’m going to happily tell everyone that I’m twenty eleven… No, wait, THIRTY ONE! And be proud of what all those years have been, and what wonderful things being this age signifies. Every new year is a bonus, and a whole new world of opportunities to discover and memories to be made!

I’m starting this new year of my life with a few missing teeth and hopeful that I’ll end it with a whole new set in some capacity. I’m still building up strength and working out who I am and what I’m capable of. It’s like in movies when there’s an apocalypse and everyone hides underground and they come out after the storm to survey the damaged land that once was their life, and they face the overwhelming task of putting things back together and rebuilding and starting afresh (no I’m not likening one person getting cancer to the horrors of hurricanes, etc. just one of my silly analogies). But I’m looking forward to the future. But please don’t think I’m all merry and everything is perfect, I’m probably the most lost and confused than I’ve ever been and my anxiety is through the roof. But that doesn’t mean I’m not happy with who I am and where I am. Or at least that I’m working on it. Tough times will always be there but they’re just one part of life. I read a quote today (will it never end?!) saying that in 2018 I was living both my best life and my worst life simultaneously. I’ll take that.

So well done you for making it to your age. Think you look old? Think you seem old? Well in 10 years you will look back and sigh at how young and beautiful you were. Think your life is slipping away while you prepare for the main act? Well kick out the support band and start playing lead guitar in your own life. Or bass guitar, that’s fine too, I always liked being a bass player better. Keyboards is fun too… Or be the lead singer! You do you, in whatever imperfect and wonderful way that may be. And happy birthday for whenever your turn is! Celebrate it because one year older is one more wonderful year you’ve had on this earth, one more trip around the sun and one more year of being you. And that is something worth celebrating.

On the Fringe…

I went to the Edinburgh Fringe festival a couple of weekends ago with my dear friend Shiri.

It was brilliant. We caught up with Katie’s (my bestie who was visiting recently) friend Sam who I met while Katie was here and I loved her so we’re friends now. She’s an actress and we caught her improv show, which was fun. Like an actual actress! How cool is that!

We also met a guy From Seattle named Sam. It was a weekend of Sams. I wrote a limerick about him because that’s what I do now when I meet people –

I once met a man from Seattle,
I was happy that he did not prattle.
We met at Ed Fest,
I asked what he liked best:
A puppet show that was a battle

So we mostly went to great shows but we also went to one that wasn’t good, at the insistence of Seattle Sam. It was a puppet show about puppets dying. Yes, as you might have guessed from the limerick, it was a battle to watch. People laughed, we didn’t really get the jokes, they were crude and meaningless.

But one of the puppets was there through whole thing: the narrator, an old man who talked about the ever-moving, ever-changing phases of life. Seasons come and seasons go, time is transient.

He told of a man who feels every death in the world as if it’s a personal loss. If a man dies on the other side of the world, he is sad because he imagines it is his own father. If a woman dies, he imagines it is his daughter. The narrator explains:

What is the source of this poor man’s grief? It is the unbearable truth of the world. And because it is unbearable, we have closed our hearts to it, so long ago that we have forgotten how to open them.

Have we closed our hearts off to some of the world’s unbearable grief? It’s possible, I think we may tend to minimise a lot of things, a lot of things are more normalised now we can see it all on tv. But you can’t take everything on as personal or you’ll never get out of bed.

While most scenes in this show were insufferable, this old man popped up every now and then to discuss humanity and the world. And as it reached the end, he got more tired, and in one of his speeches, he loses momentum, he whispers his last words as he sinks to his knees, his final thoughts barely heard by those listening. He falls, his final resting place on a black box, in the middle of the stage, everyone silent.

Moments after, a big menacing creature ambles out. While rather scary, it has a look of quiet resignation on its face, almost as if it is a protector. Human sized, it reaches down and it picks up the small fallen wooden old man and then it pauses for a moment, turns around and looks straight at me. Not just out into the audience, not just to my side of the room, it looks at me. And for a few brief seconds, death and I look each other right in the eyes.

And I knew it meant me no harm. And if my time were to come, it would be there to take me in its arms and carry me away.

Yes yes, I’m not religious, I don’t believe in spirits or death being a big menacing monster who holds you in your final moments. But there was something rather reassuring about this moment. We are not far from the big monster many times during our lives, sometimes more than others. It was Epicurus who said:

Death does not concern us, because as long as we exist, death is not here…

Having said that, I think I’ll try to keep the hell away from old mate death for as long as possible thanks, because I’m busy, I’ve got lots of things to get done before we meet again. And there’s nothing actually reassuring about dying, death is death, not of us want to die, and it’s not nice on all counts. But it was nice that it took the time to wander past to say hello, and kept on moving on its way, leaving me with a reminder of how lucky I am to be alive.

Sound like an analogy for something?

Anyway, the other bit of life wisdom from the festival was from a play about the fall of the Berlin Wall. Now this one we actually did enjoy. The poignant line from it was:

Home is not a place, it is a thing that you make. That is Freedom.

Aah. There you go. It is true though. Where I grew up will always be home, but so is London. And other places have been too. Home is made by the people you surround yourself with, and the life you make for yourself, and the freedom that gives you. So thank you to all the people who have contributed to my feeling of home throughout the various places I have decided to settle throughout my life.

Anyway, I highly recommend the Edinburgh Fringe Festival, I had a fantastic time. I will be back every year.

New Year updates

Now that all of the excitement of Christmas is over and my parents are gone, it’s time to do some reflecting.

December was a big month. I turned 30, I had the worst few weeks of my life health wise (physical and mental health) when I was feeling so terrible and going through so much pain and stress, and on top of that Charlie has decided to leave me and move out.

I had no warning at all, no idea it was coming, so it’s been a total shock and not easy to deal with at first, but I am pushing on with purpose into the new year.

He is still being supportive when I need him for something and I am grateful that he got me through the worst bits, and definitely through the last of my injections. I will always be grateful for everything he has done, he was wonderful.

Having my parents around has been amazing and I am grateful to them for their support. It was good timing that they were here.

I thought it might be a lot more difficult from here, being on my own now, but then I realised I’m not on my own. I’m never on my own. I have such amazing friends to support me whenever I need them, and I am staunchly independent anyway so I’ll survive. And as I say, the worst of it and those bloody injections are gone!

Dad and I did a cover of Alanis Morissette’s ‘Hand in my pocket’ on Christmas day after hearing it playing at a café the day before. I’ll put a link to the video up here soon, but I have a new appreciation of that song now, I’m pretty sure it was written about me. Very poignant.

And all I can say is that everything’s gonna be fine fine fine.

Trex week wrap up

This week I met with a 4th year medical student who needed someone to use for a case study. You mean I can be the centre of attention and talk about myself? Oh ok! He was nice. We had fun. I’ll see him again sometime.

On Thursday I stopped in to grab my lunch at the UCLH café and came across a lovely couple of older guys also having lunch. I had to poke in at the table with them because it was so busy and I’m a bit tricky, needing two chairs (one for my water backpack). But they moved and shuffled around to make room for me. I eavesdropped on their conversation and one of them had some sort of cancer and it sounded like he was going to be starting chemo. I’m with you brother. Maybe I’ll see you around soon. When I got up to leave they insisted on taking my plate and scraping it and putting it away for me. Thanks guys. Things like this, as always, make my day. What lovely people I keep coming across.

Then I walked through the main UCLH foyer and there was a baroque quartet playing. I always enjoy the mid week entertainment they have there.

So glad it’s the weekend. MRI on Sunday (I don’t seem to be able to keep away from the place!), but I’ll try to slot in a few fun things too.

I never thought I would get cancer

Of course I didn’t, who does.

But now it is just a part of my life. Only for a short time, I hope, I desperately hope it doesn’t come back again. But here we are.

But it’s ok, I don’t really mind much. Seriously. Everyone else seems to mind a lot more than I do. I’m not sad, angry, upset. There’s no reason to feel these sorts of things. Tricky things happen in life and you take them on, tackle them and come out the other side stronger. I don’t see why this is any different.

I honestly don’t feel like my life is any worse off than it was before this. Is that a strange thing to say? Sure, I’m going to a few less gigs at the moment, and I’m spending my money on a few less spontaneous holidays (my bank account is grateful). I’m also a lot more flaky with committing to social events. But I’m still going out to bars, I’m still hanging out with my friends, my boyfriend, going out for brunch, coffee, going to parties, seeing bands, blogging…

I’m only going to work for about 1ish weeks out of every 5… I guess that’s quite a change. That’s definitely the biggest thing that’s different in my life. But I’m still in touch and I work when I can. Everyone else I’ve spoken to going through chemo is always amazed that I’m working at all. They say they’re not able to. Um… well… I get one good week, so I’m going to make it as normal as possible.

Anyway, I’m also reading a lot more, and I’m making new friends, and having brand new experiences and adventures that I never would have had… I’m not saying I’m glad it’s all happened obviously! But I don’t have any negative thoughts towards it.

Although what IS annoying is that I have this huge lump on my face for a year. I think that’s probably the worst part. But you know… even with that I see more positives than negatives (God, I’m annoying, aren’t I!) I’ve seen patients with lower jaw sarcomas that are huge. The whole side of their face is swollen, and often sarcoma people are almost unrecognisable pre to post surgery. Poor, poor things. Mine isn’t going to be that much of a difference. I mean it’s always there, and you can’t not notice it. But I’m getting really good at angles for selfies, and often if people don’t know it’s there then they don’t realise. I’m also learning to smirk instead of smile, hides it a bit.

I am the person in the ward sitting there smiling while I’m getting my chemo. I’m the person who’s excited to go into the ward each day and see everyone. I’m the person who’s excited about getting kitted up with my new backpack of chemo to head off to the hotel. I’m the person thinking it’s a great fun adventure when the fire alarm goes off in the hotel and we all have to traipse down 5 flights of stairs (I got to catch up with all my friends out on the street!)

Yes, I’m the person who only has positive things to find when people are complaining. Who, even when something bad is happening to me, manages to only find something good from it. I look at myself sometimes and roll my eyes. I’m sure I’m annoying. Oh well! I don’t really think there’s any other way worth being.

What was the song? Always look on the bright side of life.

Something like that. Life is too short to not enjoy it!