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.

Another of those reflective moments

It is always useful to remember in life that there is always someone worse off than you. Always someone who has it worse.

Not in an ‘I’m glad there’s someone suffering worse than me’ kind of way. I mean I don’t want anyone to suffer. Especially not from anything really bad. It’s hard to hear of people struggling. But there is always someone who has it worse. Probably many people.

Bit of a depressing thing to think about but I come across people who lose limbs to their sarcomas, or who find out their chemo isn’t working, or who have terminal cancer, or who have had to spend more time in the hospital, or who have chemo for longer, or who are given very low chances of beating their cancer. In terms of hectic-ness of chemo, us osteosarcoma people have some of the most extensive chemo, so we mostly win on that, but still there are positives to be found. It’s also a bit of a badge of honour! Most people are shocked when we explain our chemo schedule.

And that’s just in the cancer realm! That’s not even delving into chronic illnesses like MS, or even more obscure illnesses/diseases that are rare and no one knows much about.

You can really get bogged down if you start to think about all the people who are suffering in the world. So don’t dwell. But just remember although things seem bad sometimes, it definitely could always be worse!! Though that’s not to say lesser problems and worries than those deemed ‘most severe’ aren’t worrying or legitimate. This is not to discredit the ‘every day’ sort of problems that bother us.

Time and time again I am reminded of how lucky I am. Not only because of the fact that really everything is going smoothly so far in the grand scheme of things, but also because of all support I have – how incredibly wonderful, understanding and supportive work has been (don’t know what I would do without their amazing attitude through all of this), and how great all my friends, nurses, acquaintances, friends of friends, family of friends, friends of family, Twitter and Instagram followers etc. have been. How my parents have come over to visit and are coming back for the surgery! Wow.

Everyone is ‘stronger’ than they think. I’m not particularly strong, I’m just handling things as best I can. As everyone is. Sometimes you have some days where it all seems to get the better of you. And that’s not ‘weak’, and you don’t have to try and be ‘strong’ all the time. Just acknowledge the bad days, accept them for what they are, feel sorry for yourself for a bit, have a bit of a whine, then try to pick yourself up and remember that the worst times will be followed by better times in some way, shape or form. Be determined to make the most of what you’ve got.

Much love to everyone, and I hope you’re all going ok with everything you’re dealing with. Life can be funny at times, but it’s good. I really like it, I think I’ll keep it around.

Thoughts.

I’ve been feeling a little bit sorry for myself this week. I accidentally came across some statistics about 5-year survival rates for people diagnosed with sarcoma (I had avoided these sorts of stats), and they’re not exactly inspiring.

But I know these sorts of stats are not useful. They’re not specific to me, they don’t mean anything. All that is important is that my sarcoma is treatable, and that if the surgeon can manage to get it all out, I’ve got a half decent chance of beating it, hopefully for many more years than 5 (in fact I intend on never coming across cancer again).

But I can’t help it playing out in the back of my mind. Especially with the knowledge that I most probably can’t finish my chemo and the knowledge that sarcomas do seem to like repeat performances.

But I’m good at rationalising thoughts and emotions and dealing with them, and the last thing I’m going to do is let something like that bother me!

But hey, guys, let’s stop doing things that make us unhappy. Let’s stop putting off things we want to do, or have been meaning to do. Let’s stop making excuses for not doing things. Let’s stop saying we don’t have enough time – we can make time for things that matter. Let’s stop wasting time on things that don’t fulfill us. Let’s stop caring what everyone thinks. Let’s stop worrying about things that really don’t matter. Let’s let go of negative thoughts. Let’s tell people we love them. Let’s forgive people for things they’ve done. Let’s forgive ourselves for things we’ve done. Let’s take opportunities. Let’s watch sunrises. Let’s just let go and live, shall we?

I’m more determined than ever to make the most of every moment (am I sounding like a cliché? Cringe). I challenge you all to do the same!

Monday thoughts and childhood memories

I grew up playing music, singing, performing. Weekends were often spent driving to various performances or competitions around Sydney. Eisteddfod weekend was always hectic, sometimes you’d be lucky and at least have the singing and piano ones on different weekends but sometimes they overlapped.

But even without the overlap it was still pretty hectic. In a weekend I could have 4 different singing ones and some would need costumes.

One year I had to be little Cosette from Les Mis (‘there is a castle on a cloud’) dressed in her almost homeless street urchin dress. Then turn around the next day and become Pocahontas (‘can you paint with all the colours of the wind’), the powerful Indian princess with her authentic native American dress.

Wow.

So for this memorable outfit change, mum made basically a reversible calico sac. One one side it looked like a Tunic which we grubbed up and made look like the little Cosette. Then once that was over, we went home and turned it inside out. She left big seams hidden on the inside of Cosette dress so we could cut and fray it for Pocahontas. Painted up with earthy browns and some reds and blues and teemed with a head tie with some feathers attached that we found around the streets…

Both looked amazing and so professional. She has a lot of talents my mum, one is just knowing what the task is, conceptualising it, and carrying it out well no matter what skill is needed. She can pretty much do anything. She’s very versatile and damn good.

Anyway, I think there’s a point to this. There must be an analogy hidden in here somewhere. Always be adaptable and flexible like that dress (or my mum for that matter). My goodness some crazy things happen in life. We’ve all seen it, we’ll all see a lot more of it. And you’re going to be far better off if you’re already mentally prepared to just take any new advancement and work out how you’ll make it work for you. Yeah it might seem pretty bad at the time. But you get that brain working and thinking and you turn whatever bad thing you’ve got into something that you can make good. Try it. Try varying your Mindset when something happens that you don’t like. Change isn’t always bad, even if it often seems it at first (like my pharmacist leaving, right? I’ve been told his replacement is taller. He’d better be awesome).

As Victor Frankl wrote in his book ‘Man’s search for Meaning’, ‘The last of the human freedoms is to choose ones attitude in any given set of circumstances.’

So hold onto that. It’s your right. And make the right choice.

Much love.

A somewhat disjointed update…

I looked at my eye lashes this morning… there appears to be a bit of a gap in my lower set on my left eye. Well then. I suppose they’ve had enough and are going on holiday. My left eye is also really swollen at the moment and itchy and a bit gross. So really I look a bit odd. Eyebrows are still going strong though! Thanks guys!

My ‘good week’ is nearing its end and it doesn’t really feel like it’s started yet. Lots of coughing, being tired and feeling a bit shit really. Plus the eye thing. I had to work from home yesterday because I wasn’t feeling physically up to going in. But I have managed two pub quizzes this week and I’ve got some nice things planned this weekend including seeing The Dears on Saturday night (their album ‘No Cities Left’ is great), bottomless brunch with a friend, and Mail Rail (riding on the old abandoned underground railway that used to be used to carry the mail).

Should be fun!

I was doing some thinking this morning, and you know what’s really weird?
Cancer is created by your own body. It’s your own cells deciding they need to rapidly multiply.
I had never really thought about it before this whole adventure started.
I always thought my body was out to get me but I didn’t realise it was in such a big way!

I made a new friend this morning. I had to go in to get my pre-chemo bloods taken and my PICC line dressing changed. She told me my hair (well…head) looked great and told me her cancer story. Breast cancer 5 years ago and now it’s come back and spread to a lot of different places. Sounds like she’s had a difficult time. Do they not monitor her closely to make sure they catch it as soon as it comes back? Or is it just luck that you can catch it before it spreads everywhere? Gee, cancer can be scary. Mine certainly isn’t. But she was doing ok. She referred to her cancer as a parasite. And I’ve heard that a lot. ‘Parasite’, ‘intruder’, similar such words. But it’s not, it’s just your body thinking it’s helping but actually accidentally trying to kill you. How is it that they can get it so right and yet so wrong?

I found out today that I have to stay in the alternative hotel next week, as well as isolation in the ward, and have to have three days of negative swabs to rule out me having a cold. And if they’re not negative (I’m a little worried) then I’m in there the next week too. No bench space at all to even put my jug down in the bathroom… who knows how I’m going to do my pH testing…

But it’s all just an adventure, isn’t it?

I’ll be particularly grateful for The Cotton Rooms when I finally get back there.