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.

Always in my thoughts, now more than ever…

Yesterday my dear friend Katie started whole brain radiation (Canada Katie – we shall refer to her as Canada Katie, as she is an entirely different person from my long time friend Katie who came to visit from Australia a couple of months ago and we don’t want to give that Katie cancer by way of me not distinguishing between the two).

Sorry, let’s just do that again.

Whole. Brain. Radiation.

Have you ever heard a more terrifying three words?

Though i suppose they are trumped by three more words…

Trying. To. Live.

And at 34, she has a lot more living to do, despite terminal breast cancer doing its best to stop her. Once you get metastatic breast cancer (i.e. spread) you never get rid of it. The intention is to survive as long as possible, but you will never be cured. I know a lot of people living with their metastatic cancer. It is possible.

From this absolutely hectic treatment, she will lose her hair once again, and suffer all the horrible side effects like nausea, fatigue, memory and cognitive issues and months of recovery. This obviously bothers her somewhat.

We had a chat a little while ago when she first found out it had spread upwards, about where the point is that you stop opting for the ridiculously quality-of-life altering treatments like this. It’s not now for her, thank goodness, and hopefully we’re a long way from that point. But I can only imagine what it must feel like to keep going through this. To be facing another round of treatment and knowing what a toll it will have on her body and her life.

Her brain is still fine but the cancer has spread to her cranium. The plan is to ‘radiate the hell’ out of her head (in her words), which will hopefully zap the skull guy, relieve the pain and pressure, then we can go back to managing the cancer in her liver.

Big sigh.

I say ‘we’ because she and I are such a team. I mean obviously this is all on her, unfortunately she is the one struggling through this, and if I could take some of it for her, I would.

Sometimes I feel like a broken record, going on and on to her about how much I love her but oh well! This girl has helped me through some hard times and celebrated with me through the good.

My dear (Canada) Katie, I just want to say a few things to you.

You have changed my life.
You have changed the way I think.
You have given me so much courage.
You have helped me know what to say at difficult times.
You don’t know how often I think WWKD (or should I say WWCKD).
I am so proud of you.
My life is so enriched by you being in it.
I am always here for you.
You are a testament to how people should live their lives.
There is a lot that people can learn from you.

To everyone else out there, she could do with all your thoughts right now so if you don’t mind shooting them all over to Canada to hover all around her while she goes through this radiation treatment over the next week, it would be much appreciated. I’m glad Clarence’s brother is over there looking after her too.

So while you’re getting ready for work or starting your weekend and have a thought that at least it’s Friday and you’ve got two days of freedom ahead of you, or that you’re exhausted from a hard work week… Just spare a thought for Canada Katie. And for that matter for anyone suffering, for whom a weekend is not an escape from much at all right now, or who would give anything for their biggest problem to be that their boss yelled at them or their colleague was being a dickhead.

That’s not to say that every day problems are not legitimate problems, if I was ranting to her about an every day issue in my life, she wouldn’t for a second not want to hear about it because it’s not as dire as her problems. She is happy to hear my good news even if her news is bad, etc. We can compartmentalise these things. We still want to hear about you even if we’re going through a bit worse at the moment. (Though while I’ll absolutely sympathise about how much your finger must hurt after shutting it in a door, please don’t tell me that your nail falling off is the worst thing that you could think of, and how will you possibly survive if it doesn’t grow back looking normal… Even if it is the finger your engagement ring goes on… I’m sure you’ll find a way.)

So please spare a thought for Canada Katie. Love you girl, I’m here for you all the way.

A moment for a thought for Amy and anyone else with a terminal diagnosis…

I haven’t really had to deal with death much, aside from elderly grandparents. A pseudo friend died of Leukaemia when I was 17. Another friend from school died a few years after. That’s about it.

Since I’ve been diagnosed with cancer I’ve managed to get into a huge community on Twitter of other people who are going through the same or similar things. Well, similar in the sense that they’re also dealing with or have dealt with cancer. There is a marvellous group of incredible people who I connect with almost on a daily basis. They are so supportive and understanding and have become people I would describe as friends.

One of my favourites is Amy Mattingly, and unfortunately today is her memorial service.

Even in her last couple of weeks she was still checking in with me to see how I was doing. She was interested in knowing details of my recovery and how the swelling was progressing. In the week she found out her SIRT couldn’t go ahead (an experimental treatment that wasn’t funded by the NHS, so she crowd funded and we all pitched in to help), she was telling me how much motivation I had been giving her that week (me giving this amazing human motivation? What a compliment). She was happy for me getting to the pub, she was happy that I had no treatment left, she said I deserved a big holiday. All this, only weeks before she left us.

I like to think she’s on a big holiday now. But I do know the truth of it is that she’s dead. Gone forever. Cancer really kills. And she’s known it was coming for some time. Her final tweet was a great, but true and humbling:

‘Advanced cancer is like SkiFree. No matter which route you take down the mountain, the big robot guy eats you in the end.’

I know a few people with terminal cancer. There is no hope for them of beating their cancer. No matter how positive they are, they will die too, and it could happen at any time. Cancer doesn’t care if you’re positive or ‘strong’ or how hard you ‘fight’. I don’t know how you come to terms with knowing your demise is imminent. But I know you do, somehow. And these girls do SO gallantly that they give me strength to get through anything I have to.

It also gets you thinking about the question of whether it’s better to know about your death in advance or for it to happen suddenly? Either way, it shouldn’t happen in your 30s!

To all the people I know who despite their good attitude, positivity and staunch willingness to live as long as possible, will in fact the die of this horrible fate, If I had one wish in the whole world it would be to save you and restore you all to your cancer free state.

As I can’t quite make this happen, I vow to love and appreciate you while you’re here, to ask you how you’re going, to check in, to always care. And once the inevitable time comes that you are gone, I will remember you forever, my thoughts and memories of you will stay with me and I will live fully in your honour. Please know that connecting with you has changed my life.

To Amy, I will take your spirit and outlook and colour with me everywhere I go. You will be a beacon of light, always in me. You had a profound effect on me, you mean a lot. I’ve been thinking a lot about the meaning of life and I have come up with this. It is our ability to choose how we react to bad situations. And you’ve done so gallantly. This is our humanity. We can have everything taken away from us except our ability to choose how to react to it. And it is our legacy. The things we did in our lives that affected people, the people we knew, the people we loved. And you have reached so many people and you will be with us forever. It doesn’t make it easier, but I know you have had an impact on more people than most people do even if they make it to 100. Cancer sucks more than anything but we’ll keep trying to get to the root of it and kill it all. I can only thank you for being so incredible, so important. For being Amy.

I’m sick but I’m pretty, yeah!

Thank you all for the kind words on my previous post. You’re all amazing.

As promised, for anyone who hasn’t seen it yet and is interested (I think a lot of you will have seen it by now ), here is the link to our little Christmas Day jam:

https://www.youtube.com/watch?v=CXH_7Nkvmnw&feature=youtu.be

We had a lot of fun, and in fact a fantastic Christmas day.

Love this song now, it has a whole new meaning, the lyrics are great.

Unfortunately… No going home today.

Most importantly, I can’t thank you all enough for your finger crossing, crossing of various limbs, thoughts, hopes, well wishes.

Unfortunately cancer/chemo wins this round and I can’t get home for our planned Christmas lunch /day of cheer tomorrow.

I was feeling a bit down about it. But we’ll go to the pub for lunch instead, I’m getting ma to bring in my Christmas dress, and hopefully I can go home tomorrow eve.

I’ll take mum and dad to the Christmas markets on Sunday too so that will be nice.

Chemo isn’t being held up on my account next week but due to the public holidays I don’t start again until Wednesday. So I will get an extra day with my parents before they leave, which is pretty great. I’ll be stuck in over the following weekend, definitely Saturday, hopefully not NYE, but hey… It’s not like I can really go out partying anyway! So I guess no great loss.

So… It’s not what I was hoping for, but it will be nice.

And we always make the most of what we’ve got!!!

And really, I’ve got a lot.

I’ll try to check back in over the weekend but in case I don’t, Merry Christmas everyone. You are all amazing and I can’t thank you enough for your love and support. You make me so happy! You give me life! Give all your loved ones a hug. A big hug.

I’ll leave you with a photo of one of the Christmas Trees in the Cotton Rooms:

The roller coaster ride that puts me in the ward… then puts me back in the Cotton Rooms the next day… But now we need home tomorrow please!!!

So…

This is going to be a bit of a roller coaster. post.

This morning kind of went from bad to worse…

My hopes to get out tomorrow (Friday) in time for our Christmas lunch on Saturday were slowly to rapidly slipping away from me.

And my hopes to get out of the ward and back into the Cotton Rooms today appeared to have gone entirely. I was less worried about that, I just want to get out tomorrow! But they got my parents to go over to the Cotton Rooms (thanks parents, you are amazing), check me out and bring all my things over to the hospital.

So I met with my Oncologist this morning, well he came to visit me in the ward. And basically he thought they’d be keeping me over the weekend unless I did some super human, never-before-seen type Methotrexate clearing. And he said it’s possible (likely) that this is what I’m looking at for my final 6 Methotrexate treatments. Hospitals and weeks that drag out longer. Ugh more hospitals.

As a result, he also said we would be putting off next week’s chemo by a few days. Which means goodbye to all free weekends for the foreseeable future (until the schedule needs to be put off again).

I’m not going to lie, this was all getting me down. The thought of my last 10 weeks of chemo probably now being pushed out, maybe even for months. It’s hard to manage. BUT you know what? Last week I ran into one of my fellow Ambicare Crew (he’s in my next ‘people met so far’ post so I won’t give away too much right now), and he was having a bad week. Sure I was having a bad couple of weeks too. But he had received some bad news, and I can only guess, but perhaps he found out that his chemo isn’t working. Or there may be some other big complication that means his prognosis is not so good. It seemed somewhat serious.

In terms of that, I have had only good news the whole way. My chemo has worked, my scans have been good, I’m finally meeting with the surgeon in a couple of weeks.

Sure, it might take a bit longer, and yeah it will be frustrating and no it’s not what I want. But at least we’re still going in the right direction, even if it’s at more of a crawl. All that will sort itself out.

BUT I NEED TO GET HOME TOMORROW!

Anyway, then my blood results came back, and they were… good. Back to what you would expect for a Thursday! So but an hour after my parents packed everything up and walked it over to me, we were all packing it back up and walking it back to the Cotton Rooms.

So that is good!

I went back into Ambicare, and they think that result is borderline for clearing by Friday afternoon and getting to go home. BUT BORDERLINE IS BETTER THAN THE ‘NO CHANCE’ I HAD THIS MORNING!!!

Not sure what’s going to happen with next week, I was meant to go into clinic tomorrow morning, so I’ll just go and do that and see what happens.

I’ll still get a disrupted sleep tonight, with alarms and bathroom stops, but nothing like last night where people kept coming to shout at me about unimportant things that I’d already told them every half hour to hour.

Phew.

Once again, please cross all your fingers! It appears to have worked for getting me out of hospital by Tuesday last time (even though I had to miss my gig), this time we need to get out of here Friday afternoon. Please please just let me get out tomorrow afternoon. Whatever happens after this week will happen but please just give me this weekend, even if none others.

A post of gratitude.

You know what has been amazing? My friends and family, and really anyone who I have come in contact with.
The support I have received through this all is overwhelming.

I find it difficult to have things done for me, to accept help. I’ve always been staunchly independent. But the offers to help from all different directions, should I need it, have been so lovely, and have meant so much.

And of course not just offers, anyone who has done anything for me when I have needed it, I am eternally grateful.

On top of that, the packages and presents and cards and flowers I have received have been amazing. Seriously.

To anyone who has sent or given me anything, in general or for my birthday, to anyone who has offered any help, or any support, I wish I could find words to thank you all, and I wish I could list you all by name, but we would be here forever. You all know who you are, and I would be lost without you all.

Also to anyone who has given a blog post a comment, or a Facebook or Instagram post a comment or a like… To all the lovely words you have saved for me – Every one of those means so much.

Even to people I don’t know who have reached out with a message or followed the blog, this is special too.

You never want to be in this situation, but I find myself feeling so lucky on a daily basis for all of you wonderful people.

My parents are currently here too, visiting from Australia for a month, and we have been having so much fun now that I am no longer dying in hospital. Even if it involves sitting around for transfusions or playing Scrabble in the Cotton Rooms. It’s been amazing, and I am so grateful to them for being here.

I am surrounded by love and support from so many people, and I can’t thank you all enough for every little thing. And big thing of course! You are helping me get through this, each and every one of you!

So thank you. Eternally. I’ll never forget how amazing you have all been through my hardest struggles.

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