Cancerversaries

Anniversaries. I’ve never been very good at them. Birthdays, yes. I love birthdays. But anniversaries of things, less-so (I don’t make a very good partner, for example). I just live too much in the now and don’t spend time dwelling on the past. Though I must say that every year I smile to myself when I remember it’s been another year since I first came to the UK. Although I’m not great at remembering the exact date, I still like to do something to mark the approximate day that brought me to this wonderful country. Every day I am reaping the benefits of that decision.

But cancer? Why would I want to forever mark the day that I got diagnosed with cancer? Or had major major surgery? Or anything, really? I’m not sure I would have even realised that it was coming up to my two year mark since diagnosis, had my Oncologist not mentioned it last time I saw him. Ask me when I was diagnosed and I would rattle off ‘August’, but I don’t spend every August thinking about how I was diagnosed x amounts of years ago. No, August is for summer, the Edinburgh Fringe Festival and my best friend’s birthday.

It went along the lines of: ‘next time I see you it’ll be past your 2 year mark’.
‘No… it won’t… surely…’
‘It will… right?’ he said tentatively as he furrowed his brow
‘Uh… oh… um… I think you’re right.
‘I am.’

Well that’s that then. He said 2 years is good. 80% of recurrences happen within 2 years, so once you reach that 2 year mark without anything ominous turning up on scans, your chances are looking a lot more fun. And I like fun.
(Disclaimer: latest scan results still pending but I’m sure I would have heard by now if my demise was more rapidly imminent than we thought, considering the MRI was a couple of weeks ago).

I started writing a post near the beginning of my diagnosis about how I couldn’t get onboard with the practice that everyone in the cancer community seems to take part in – counting every day since diagnosis, or since the first ‘no evidence of disease’ scan etc. It went like this –

The whole ‘__ days without cancer’ really doesn’t sit well with me.
I know people love it and I’m sure it’s really important for some people. That’s great. I’m all for whatever helps anyone, I’m not here to judge.
But the last thing I want is for my life to be defined by cancer. I don’t want to count every day that I’m free from it. I don’t want every day after this all finishes to have a cancer watermark on it.
Yes I know it could come back. And yes I know if it does, it’s really not looking great for me.
But I’ll deal with it if it happens.
And you know what? It might not.
The last thing I want to do is count the days until it returns.
So I’ll forget about it. I won’t forget about the things I have learned or the people I’ve met, and I know I will forever be having check ups and the like to remind me.
It’s great if the counting thing really helps people, everyone is so different. But I will not turn my life into a ticking time bomb.

I must admit, I wrote that back in the day when I thought I could package cancer up in a nice little box and put it at the back of my wardrobe, only to be opened on certain occasions when I wanted to remember what I had been through. I’ve realised since then that it’s not quite that easy, that I do have to accept that ol cancer thing as part of my life. It won’t always be such a big part of it as it was during treatment (I’m walking further away from it every day), but it is part of me and the person that I am now. It would me remiss of me not to acknowledge that I have changed due to everything I’ve been through, but I refuse to say CANCER has changed ME. It doesn’t have that power. I have only changed myself to adapt to my surroundings, which just happen to have involved cancer. That’s just being resilient. Cancer is a part of my story but I will not allow my life to be defined by it.

All of these dates come and pass without me realising (unless someone decides to remind me). I can’t quite remember which day in August it even was… And should I be counting it from the day the dental specialist said ’the biopsy came back and it’s cancer but I don’t really know any details’ or should I count from the first meeting with my Oncologist when I found out more about the diagnosis? Or when I started chemo? Or when the tumour was cut out? Or when I had my first scan results that said ‘you might still have cancer but we can’t see it in the scans yet…?’ Or do I wait until I’ve hit the 5 year mark and count from then?

In Hamlet, Shakespeare wrote “There is nothing either good or bad, but thinking makes it so.”
By dwelling on that diagnosis date with fear and a heavy heart, we keep ourselves stuck in some past time without really being able to properly move forward. They say the best way to get over a relationship that ends is to cut off all ties with your ex. Well you can’t cut off all ties with memories nor with the hospital you must return to for scans, but you can cut off ties with bad thoughts that refuse to let it all go and prevent you from moving on.

Our reaction to things is entirely in our own control, and ours only. Only we can free ourselves (though it’s ok to need some help with that).

Diagnosis date is the date that they finally took you seriously and confirmed that you’re not going mad, there IS something wrong.
Diagnosis date is the date that the whole world seemed to jump into action to do everything they could for you.
Diagnosis date is the date that this problem that had been lurking within you could finally start getting treated.
Diagnosis date is when you learnt who your true friends are and no longer had to deal with those who weren’t.
Diagnosis date is many things, but what it should not be is a yearly chance to wallow in self pity, obsess over what was, or keep you emotionally tied to a period of your life when you were incredibly ill and struggling.
And the date of your first NED scan or sign of being in remission (if you’re lucky enough to get either of those things) should be something that sets you free of your cancer, not something that defines the rest of your life by counting every day since. Yes, you had cancer, but that’s not who you are, and that’s not all you will be. Spread your wings and fly to freedom, hopefully forever, or at least as long as you are able. Enjoy every precious moment for what it is, not purposefully in the shadow of cancer.

I hear you ask: ‘But what if I use it as a reminder of how far I’ve come and that I should make the most of every day? What if I already do see it in a positive light?’
Do whatever works for you! But why can’t every single day you are alive and the sun rises and you breathe fresh air into your lungs be a reminder of how precious life is? I think there is a risk we get too preoccupied with cancer, and it’s fair to, it’s (hopefully) the biggest thing we will ever have to face in life. But let’s stop dwelling on it and let it go. Focus our attention on all the many beautiful things around us, not this one big thing that happened to us.

But now we’re talking about it (thanks Onc), I think yesterday was 2 years since I got my biopsy results back. So that’s cool. 2 years is apparently a milestone so I’ll give that thought a smile and move happily on.

The Lucy Effect

Through the whole cancer thing, we cling to the idea of options. As long as there are options, it’ll be fine. Things don’t necessarily go according to plan, which is something that is terrifying at the time because no one explains to you at the beginning that it’s common, and usually that’s fine, there are other options to try. You do tend to forget the true seriousness of this cancer malarky sometimes. Especially when you know so many people with it who look so ‘well’. And I talk a lot about how people are successfully living with cancer these days, or being treated, cured, and you start to forget just how serious it is. Then you get a harsh reminder.

I know so many people now with cancer. There was a point back around this time last year when a good friend of mine died (you might remember Amy?) and I sat myself down and said ‘ok, this is going to keep happening. Although everyone you know will eventually die, you are putting yourself in the line for making friends with people who are more likely to die sooner than others. Is this what you want to do?’ And I did think about it, I really did. Was it time to step away from the cancer community and my friends? It can be hard trying to get through this cancer thing yourself, let alone also losing friends along the way from the same (well, overall same, though there’s nothing same about all the different types of cancer) disease. It’s weird to think you are entering into relationships with people sometimes even knowing that they won’t be around much longer.

But the answer I gave myself was yes, a resounding yes, my life is so much richer for having these people in it, that’s all there is to it.

Today the world has lost another bright light. And so bright it was. I’ve been friends with Lucy for a while, but our friendship really started around October 2018 when she got a WhatsApp group together of a whole lot of ‘badass babes’ who were in different stages of different cancers. We have become each other’s family, in contact almost every day since then, talking through absolutely everything we’ve been going through, finding solace in knowing we’re not alone.

I think about Lucy back in October, when she brought this group of girls together, I don’t think any of us would have believed that we would now be outliving her, that our biggest test as a group would be helping each other through her death. At the time she brought us together I think she was out the other side, the cancer gone. Little did we know we would go through that yet another time with her, and that now we would be here, shocked at the fact that she is not. We were there with her when she got good news and bad news, I remember her sitting in the car when she told us one of the bad bits, feeling like I was right there with her. In  my memories, I was. Each stage, as she found out that the treatments were working, or when she found out they weren’t, we were there, trying to comfort her, trying to remind her that options are good. But I suppose we all eventually come to a time in life where there are no more options.

Up until I met Lucy, I had learnt from other people with cancer that saying ‘I am so sorry’ as a response to their bad news was the best way to go. Lucy taught me to never use those words to her. I remember one blog post, when she got the latest of bad news at the time, she said ‘Once again, keep your ‘I’m sorry’s and your ’sympathies’ to yourself; they don’t help anything, especially not me!’
To everyone who has heard me ramble on about language before, here is such a prime example of how you just need to listen to someone in order to work out the right language to use for them. Don’t just say whatever you want to without a thought for what they might want or need to hear.

I think there was a time in my life where, like most people afraid to talk about or properly acknowledge death, I maybe would have spoken about her in the present tense, like she’s still here, like she never truly left. I know that isn’t the case, I know she’s gone. But also, in a way, she will never entirely be gone. In the wise words of philosophers Banksy and Macklemore – they say you die twice, once when they bury you in the grave, and the other time the last time someone mentions your name.

Thanks to Lucy, I have now taken up knitting. I now drink oat milk. She got us all into playing the Sims at some point. A lot of us have matching backpacks to her. She got me onto Jody Picoult, her favourite author. I am happy to know I have all of her books now to read, holding Lucy in my heart with every word. Lucy was very… persuasive without particularly trying to be. Maybe persuasive isn’t the word. She inspired us to do the things she did by the way she spoke about them.

I’m finding it hard to get the words to describe her, to talk about her. I find it hard in these situations when words fail me, because there are not words enough to describe Lucy or the effect she had on us. Or to fix this.

This also goes to show that even if you’re prepared for it, it comes as a shock. We knew things weren’t going well, we knew she was at the end of treatment and speaking ‘hospice’. We all knew in the back of our minds that it could mean the end was near, but none of us really believed it. Even Lucy herself said ‘I don’t know if I will come home but if I don’t I don’t I’ll be in the right place’. The hope that it would only be temporary ever present. I wonder if she said that for herself or for us. Did she believe it? Did we? Did we keep fooling ourselves up to the last minute that it wasn’t as serious as it was? Is that a bad thing if we did? I can’t imagine what it must be like to be at that stage. But even then she was looking forward to Hospice care to take the stress off her mum to actively look after her.

I have an audio clip saved on my phone of her singing ’The Reaper’ by Sia –
You came to take me away
So close I was to heaven’s gates
But no baby, no baby, not today
Oh, you tried to track me down
You followed me like the darkest cloud
But no baby, no baby, not today

I even got a mug made with the lyrics on it and sent it to her. A reminder, no Reaper, not today. When she told us a few days ago that she was out of options, I told her I was not going to start talking about her as it it were the end, I wouldn’t yet start going on about her ‘legacy’ just because she had bad news, I wasn’t going to talk about her like she was dead yet. I told her that I would write all those things down and send them to her (though when I did, it wouldn’t necessarily signify that the Reaper was imminently nigh). I sit writing this looking at that letter on the table next to me, in an envelope, addressed, ready to be sent along with a book I know she loved.

I’m sure she knew we loved her, but sitting next to me now are all the things I hadn’t said that I wanted to. Maybe I had said them all at some point along the way… It’s hard to find the balance between saying these things too early, or too late. I don’t think any of us thought that we would already be at the ’too late’ stage by now.

No I’m not crying, YOU’RE CRYING shhhhhhh!

Friends, if I can urge you to do one thing right now, it is to tell your loved ones that you love them, why you love them, and how much you love them. I know it’s cliché to say that, but write to the ones you love the most all the things you would say to them if they were no longer here – it seems we are better at sharing our feelings in hindsight – and show them, tell them, even mail it to them! If your loved ones are gone, do the same anyway.

It’s funny sitting here now, I realise how much she has leaked her way into my life in her own kind of way – not pushy, not loud, very unassumingly, but in a big, strong way. She planted so many seeds in my head that grew into beautiful, fractal trees. I say fractal trees to more embody who she was. Aside from being an amazing human, she was also a scientist. A conservationist. She cared about the environment – a girl after my own heart! She studied Conservation with birds, me with ants. In fact at one point back in February she was telling me that she was looking at PhD projects. The dreams of those who never get to fulfil them. I hope this can be a lesson to you all: never stop having dreams. There is hope in dreams, and where there is hope there is life, for however long you are blessed with it.

Every time I see a photo of her it feels like someone has stabbed me in the heart. I feel like I’ve been winded. So I put it to good use and wrote a song about/for her. Now to be able to play it through to the end without crying.

I can write this post, filled with love and an outpouring of gratitude, and just get back on with my life. As I said, she will always be with me, but I don’t have to deal with the daily reminder of her not being around quite like her family have to. Nothing can prepare you for losing a daughter, a sister, and my love goes out to her family. Their lives will eventually go on too, but the hole in their lives will feel insurmountable.

I love you Lucy. We love you. I still haven’t accepted this, I don’t know how you are supposed to go about processing this, but I feel you in my broken heart, and I hear you in all my thoughts. You were one of the good ones.

Hello all!!!!

Hello new friends, old friends and everyone in between!!!

I woke up this morning to a message from my friend Liz saying that I was in the news again! Oh hi, it me! It goes a little something like this:
https://www.dailymail.co.uk/health/article-6219319/Womans-face-rebuilt-using-shoulder-bone-muscle.html

Apart from giving me slight cancer fraud by initially saying my chemo was only 3 weeks long (those of you have been here a while will well know it was actually 24 hrs/day for 5 days a week, 3 weeks in a row, then 2 weeks off, rinse and repeat 6 times – for a total of 7 months!!!!) It was a really lovely article! Very nicely written. And they were kind enough to amend it quickly. Though might I just add that I’m not ‘returning to work soon’, I’ve been back at work for 6 months!!!

I spoke to the reporter a while ago and have been waiting for it to surface and was hoping one of you lovely people would let me know when it did. And in fact a few people have found it! And it appears a few other newspapers have run the story too based on the Daily Mail article.

I’ve already been contacted by a couple of people who saw the article who have been through or are going through similar things. I can not tell you how happy this makes me. Obviously I am devastated to hear anyone has had to endure such things too, but very happy to hear from them. I will get back to you all in due course! Thank you for reaching out.

People who have cancer often say it is isolating. I think this is quite an interesting thing to note for people who have been fortunate enough to dodge cancer so far. I have felt so supported and loved through the whole thing, and I can’t thank you all enough for helping me to not feel alone. But there is truth in the fact that going through this can be really isolating, especially if you don’t know other people who really get it. I’ve found such comfort in my amazing online community of all sorts of different cancer people. You can find similarities between any type of cancer, it is quite a leveller of playing fields. And to be fair, even people with the same cancer and treatment can have quite different experiences, so you can find similarities and differences in many places.

But with a super rare form of cancer, in an even more rare location (jaw), it can sometimes leave you thinking ‘am I the only one who knows what I’m going through?’ From ridiculously extreme chemo to having your face rebuilt and having to deal with the aftermath not only of cancer but also of having a new face to come to terms with.

I follow the ‘osteosarcoma’ hashtag on instagram and I have found a couple of lovely osteosarcoma people (or other types of sarcoma too through similar routes) but the demographic for this type of cancer is pretty much children and dogs. And polar bears. Seriously. (Poor polar bears!)

I do have a couple of people who have found me through the blog and we are now in contact. But I can’t even begin to explain how amazing it feels to know that you are not the only one, you are not the first, there are people out there who really get it.

Sometimes I think it would have been helpful before I went into surgery to see someone who’d had a similar thing. So that in those days when I wondered how on earth I would ever have a normal life again, I would know that it is possible.

And to any of you who are going through similar things, or in fact any things, it is possible!!! A lot of people with cancer use a term ‘new normal’ to describe their life after cancer, and although I think it comforts some people, it has always bothered me. To me it seems a negative thing, often used to describe things you were once able to do but no longer can. Things that cancer has taken away from you. But in classic Jen style, I won’t let cancer change my life, my life will only change if I want it to!!! (probably said with a fist in the air or something). I was speaking about this with a friend the other day who had her osteosarcoma in her leg and it has caused her many ongoing struggles, impacting her life a fair bit. She has to admit that shitty horrible cancer has affected her life. And yeah I totally get that! Please don’t think I’m glossing over serious life-changing things that cancer has caused people (or me), that I’m minimising them by saying that my life hasn’t been changed. I’m not trying to isolate people who’s lives have drastically changed. If I let my guard down for a moment, peer through the gaps of this heavily reinforced protective wall that I’ve constructed around myself, yeah there are things I can no longer do. I can’t stay out all night, I can’t manage a full five days in the office, there are days I wake up and can hardly move if I had been active the day before, I’m waiting to see if the neuropathy (painfully numb hands and feet) gets better and if I will ever be able to play music again. And I already know I’ll never be able to sing like I used to, and that was an incredibly big part of who I am. But what is the use of mourning? If I can never sing and perform again, I will work on shifting my focus to writing music or something (I’m still in hope I’ll work out the singing thing). While I will be kind on myself, I won’t let cancer have the power to take things away from me, I will only find new ways to do things and new things to do.

Staunchly independent, control freak, yeah I know! I think my stubbornness can have its pros and cons but it has been useful in taking control through cancer, and also in helping with my recovery after surgery.

Anyway. To all you lovely new people, I hope you find some interest, perhaps even solace in the words I write. Please feel free to put your email in and subscribe if you want to follow along or say hi on Twitter or Insta (@thecancerchrons). I hate shameless self promotion, but the fact that telling my story can help others brings me no end of joy. You are not alone. You are never alone.

‘Life is full of uncertainty…’ And other life lessons in places you least expect them

I manage client correspondence at work. Recently our generic email address has been getting some odd spam. People wanting to improve SEO for our website, wanting to sell weight-loss pills, viagra… the random usual things like that (I’m not sure we’ve actually had any of those last two but hey, creative license, it’s my blog).

We have some Chinese/Taiwanese clients and occasionally they will write to us in Chinese. Luckily one member of our team is from Taiwan and can handle these requests (I mean it’s not luck, it’s part of the reason she was hired…)

We got one the other day in Chinese and I couldn’t work out who it was from. I asked my colleague to look at it and as soon as she did she immediately burst out laughing. Not moving my head, I looked at her sideways from were I was sitting next to her at my computer, wondering what was going on. I pulled up chat to ask her what was happening and she was already typing.

‘omg’ she wrote, ‘I need to translate this for you. Hang on’

I hung on, the suspense bubbling up inside me. Eventually it was time for the great reveal…

Life is full of uncertainty, where you can find peace of mind is where you belong.

No matter how many difficulties you have gone through, there will still be flowers, butterflies and sunshine.

Being angry is taking others’ faults to punish yourself. Forgive others, let go.

That was it.

Well, I tell a lie. At the end it had a slightly more nonsensical phrase: “If people go to the big cities to fight hard, that is a foundation. If not, if it fails, maybe even today’s life will never be there again.” Not so sure what that’s getting at so let’s gloss over that bit for the sake of a good story.

We laughed, it was hilarious to think that we were worrying we had some complex issue to solve, when someone was just educating us on… I don’t know, Buddhist philosophies or something…

But struck a chord with me, so I kept it.

There really is so much uncertainty in life. And thinking that we have control over anything can set us up for failure and disappointment. Pinning your hopes on everything panning out will only end in tears. Much better to find peace in just being, and let other things come and go without vesting too much in them. Some things don’t work out, and that’s ok. There will always be more things. Other things.

Us millennials are obsessed with journaling and morning pages and gratitude logs and you might well roll your eyes but there is something in that. It goes right back, even everyone’s favourite Stoic Epictetus spoke of practising gratitude. If you make note of the good things that happen, you’ll find that the difficult things don’t seem so bad, they may even fade in comparison. They say that people who actively practice gratitude are much happier humans living fuller lives. ‘Wholehearted people’ if you’re into Bréne Brown. I don’t necessarily have to actively make a point to do this, I just naturally tend to fixate on the good things. For example, I am not angry or sad that I got cancer, I am only grateful that it was found, and that it happened in a time in my life when I had the beauty of the NHS behind me, an amazingly supportive employer, and my lovely friends and family. Yes, I feel lucky. I see those flowers (you all know how much I love flowers), butterflies and sunshine every day. Even if nothing seems like it’s going right, all it takes is a stranger to smile or hold a door open for you and there is something to be grateful for. And if you manage a day where you see a cat… Well… Wow! Cat!

The final point I really struggle with. I do get angry at people. I don’t get angry at things that happen that are not anyone’s doing, there’s no point in that, but I get angry at people who are rude, who are not kind to others, and who stand in the middle of a crowded footpath (seriously, guys!). I do judge (I think we all do) and I do get far too wrapped up in what other people are doing. I find it hard to let things go and I find it hard to forgive people if they haven’t done right by me or someone I love.

A friend of mine said the other day ‘we are all just our parent’s experiments’ and that the really stuck with me. We grow up with our parents teaching us everything. They have all the answers. But now we’re their age, do we have any idea what’s going on? (Seriously though, how are our parents so on top of getting the washing done? I challenge you to find one millennial who doesn’t run out of clean underwear on the regular). But anyway there is a point to this, bear with me.

Our parents love us and do everything they can to help us but they’re just people too. Those annoying habits you picked up from them? Those strange things they do (ma and da, I’m totally looking at you)? They’re just trying to navigate the minefield that is life too. Does anyone truly know how to adult?

And that person at work who snapped at you? They’re dealing with their own things, the last thing they are thinking about is how you might deal with the fact that they’re under a lot of pressure. Yes, we should all try to be kind at all times but we’re all just trying to get by, we mess up. Give people another chance (but not too many…)

I will try to take my own advice.

Somewhat related, I’ve taken to doing Friday night Tai Chi at the gym I have a 12-week pass for. I have been really enjoying it. An hour on a Friday to be away from my phone and just get grounded before the weekend. Yoga is a bit difficult for me at the moment but Tai Chi is spot on. Life is so damn hectic, it’s nice to have a break sometimes. I’m working on being more calm. I’m quite laid back but not so calm. I’ll get there.

So heading into this weekend, take some time to think of the things you are grateful for. Don’t rush through it without taking the time to savour those things that make it really special, that make your working week… Well… worth it! And try to do one kind thing for someone who doesn’t expect it. Studies have shown that doing something for someone else actually brings us greater and longer lasting joy than doing something for ourselves.

But do something for yourself too, life’s too short.

Happy 70th birthday NHS

It is the 70th birthday of the NHS.

Where to start? I suppose with something that’s obviously close to me.

Looking at cancer alone – 50% of people get cancer. That means you, and your mum. Or your partner and your dad. Or your sister and your best friend. I know of people in the US who couldn’t afford treatment, or who have gone into hundreds of thousands of dollars of debt. I wouldn’t be able to afford that, would you? Even in Australia, when my father got an MRI checking his prostate cancer, he had to pay $600/go and that’s on top of private health care.

Even just looking at MRIs… I have to have one every 2 months. No way could I afford like £400 2 months, and that’s just for maintenance scans! Who even knows how much everything else would (have) cost.

Thanks to the NHS, I’m not forced to go into ridiculous amounts of debt just to have a chance of staying alive. The beauty of us all paying that bit of tax to the NHS means that anyone can get the treatment they need regardless of whether they manage to have a job that gives them lots of money. Their fate will not be sealed by their pay check. And it’s there for when the rest of you need it.

And I haven’t had to settle for a sub-par surgeon or someone who isn’t a specialist in my area, I’ve been able to get the surgeon I need, in fact one of the best.

When I was diagnosed, some people asked me if I would move back to Australia for treatment. This confused me a lot. Why would I decide to leave my life and the country I want to live in just because I have cancer? There’s no need to necessarily give up on life just because you have cancer (not for me anyway, I know everyone’s cancer is different)! What a depressing thought that I would suddenly quit everything of the life I have built and want to live.

But that aside, why would I want to go back to a country where you’re not looked after? Where you have to fend for yourself and if you’re not rich you must go into a lot of debt to have a chance of life? I say this with not a lot of knowledge how it would be to have my cancer in Australia, maybe you can get some funding to help and maybe Medicare can help with some. But going off my dad’s experience, it is no NHS.

And the people who work for the NHS… they are the most heroic people. The doctors and surgeons are making miracles happen, the physios, anaesthetists, radiographers, therapists (ok, I’m not going to go on naming all the types of professions in the NHS, if you’re one, you are the best) are irreplaceable, the nurses are absolute angels, even the people cleaning my room when I was in hospital brought me so much joy.

Sure I’ve had moments where things haven’t been great. I’ve had blood work lost, I’ve waited in a room in A&E until 3am waiting for a bed in a ward whilst in the absolute worst of my neutropenia and illness during chemo (but they did manage to find me a private room eventually), I’ve had dentists ignore my cancer (though to be fair they were NHS but made me go on private to get an appointment quickly), I’ve had doctors forget to come around and discharge me from hospital, I’ve had doctors in hospital causing me unnecessary pain and discomfort when they thought they were doing the right thing but didn’t take a moment to think… but it takes time to go through my memory to find bad moments, and they are only a small handful of thousands of fantastic ones.

I feel like people who complain about the NHS are those who haven’t needed it yet. Or even if not, I know there can be bad experiences in anything. But the amount of people I know who the NHS has saved…

The NHS makes me proud to be British. Growing up in Australia, I never felt Australian, I knew I was British. And from the first time I stepped off that plane in London 3 years ago, I knew I was home. I don’t feel like I could ever leave. There are many things that make me proud to be British, and a few things that don’t, but above everything is the NHS. This is something so important, special, necessary to our lives here. It underpins everything, looks after us, and it’s something we’ve helped create. What a fantastic thing. I know it struggles, I know more needs to he done to help it out, I have no suggestions of how to help it, I wish someone did. But I do know we need to protect it, to keep it alive.

Happy birthday NHS. I think everyone who has ever worked for the NHS in any capacity can really take this as their own personal celebration too. From the people who used to drive blood donations around from the donor to the receiver whenever needed before refrigeration existed, to the clinical trials which ended up saving lives, to the doctors working long shifts to make sure everyone gets seen and we all live.

We thank you all. So many of us are here because of what you’ve done over the years.

Happy birthday. Have a champagne, NHS, you deserve it. But don’t let your hair down too much, because we need you, every second of every day.

Friday thoughts…

‘Imagining what might happen if one’s circumstances were different was the only sure route to madness’
– Amor Towles, A Gentleman in Moscow

I read this today and it really put into words something that I had been thinking about for some time.

Where do we get thinking ‘what if this never happened’? I know people can get stuck on this idea, playing over and over in their heads all the things that could have happened if they…
hadn’t turned down that job…
hadn’t broken up with that partner…
hadn’t moved away from friends and family…
were able to have kids..
hadn’t given that child up for adoption…
hadn’t had that accident…
(I’m just making some things up here)
and most poignantly for me at the moment, hadn’t got cancer…

I have never once thought this way, ‘what if things were better’. The closest I get is to say ‘what if I wasn’t lucky enough to be in the UK when I got cancer, and in a job that is so supportive’, which only makes me feel grateful. Sure bad things happen in life but wondering ‘what if they hadn’t happened’ does nothing other than torture yourself.

I also don’t ever think ‘why did this happen to me’ or ‘I don’t think deserve this’. A lot of people don’t ‘deserve’ things that happen to be them – I believe it was the philosopher Billy Joel who said ‘only the good die young’. Life isn’t about what you do or don’t deserve. It is about what you make of it.

Am i glad I got cancer? Hell no. But would I trade the people I’ve met, the friends I’ve made, the experiences I’ve had or the love and support I’ve been shown? Not for anything. Nor would I trade the opportunities I’ve had to offer support to others, I hope I can continue to do this.

I don’t feel like I’ve got a hard bargain. I feel lucky and grateful every day (though I also almost feel like rolling my eyes at myself when reading that back). Things in life happen. Things always happen and it’s up to us to decide how we deal with those things. That’s not to say I’m always happy with everything that happens, getting cancer is shit in every way, and sometimes I do feel a bit sorry for myself. But I never wonder where I would be if it hadn’t happened, I just try to make the most of whatever I’ve ended up with.

I know people who are dying and who know they don’t have long to live and sure they’re devastated about it and don’t want it to happen. But they are some of the most thoughtful people I know, often thinking about others, and they make the most of whatever good moments they can find. One of my friends, with a death sentence at 33, has finished three university degrees, and is spending the last of her time giving talks and spreading awareness for young adult cancer. She is a testament to what you can do with what you’ve got, and she’s one of the most brilliant people I’ve had the pleasure of meeting.

This isn’t to say that you can’t feel sorry for yourself unless you’re dying or have something serious like cancer.

To quote ‘A Man’s Search for Meaning’ by Viktor Frankl, a psychologist who survived Auschwitz:
To draw an analogy: a man’s suffering is similar to the behaviour of gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.

Sorry to jump to discussing gas chambers on a Friday… (you can’t take me anywhere!) but the point is a good one. Any struggles are legitimate, no matter how big or small they are perceived in relation to other problems. But try not to waste energy in wondering what would happen if you didn’t have them, dwelling on things that are not reality. It only causes problems, not solve them. Get out there and live whatever you’ve got to live for however long you’ve got to live it.

Happy Friday everyone! Enjoy that weekend stretched out ahead of you in whatever way you can!

A note to you all

To all my sarcoma friends who have found their way here, it seriously means so much that you’re reading. You’re all fantastic and inspiring and even if the most we’ve done is smiled and said hi as we’ve passed in the corridor, you’re my family and we’re in this together! I think the world of you all. And even just a smile between us can say so much.

Not even just my sarcoma people, to anyone who I’ve come across in ambi-care or The Cotton Rooms, it’s always nice to see you around. We may be getting different treatments for different things, but we’re all turning up to the same place and sharing an experience.

I’ll even extend it. To anyone else here who has or has had osteosarcoma… Even if we’ve never met. We’re in a club. Not one we would have chosen, but since we’ve found ourselves in it, at least we’re all in it together. That’s special. That means something.

Should I extend it further? Anyone here who has had cancer at all. We might not be able to bond over treatment, we might have had entirely different experiences. But we’re also in a club. A far less exclusive club than the sarcoma one these days, but I’m sure you’ve got your own more exclusive clubs too.

And then of course I can’t fail to mention the support crew. I.e. Everyone else. If you can, please stay only as honorary members to these clubs. But know if you ever need to join one, we’re here for you. I will try my very best to support you all as you have supported me.

Thank you for being here, thank you for still reading, it really means the world to me.