Surgery part 1

Well I don’t know about you, but I was getting tired of the will-they-won’t-they game when it comes to implant surgeries and cancellations. After the last cancellations they said there would be nothing in the foreseeable future. Yay. So I was back onto waiting, and I tried to put it out of my mind. When they called me at the end of Thursday saying I would be going in on Tuesday, I thought I’d keep it on the down low until we found out whether it would actually happen.

Weirdly, it so happened that I was going in on the same day as a friend of mine, we had chemo together and our original surgeries together, and now, after a lot of back-and-forthing for the both of us, with setbacks, cancellations and a lot of unforeseen circumstances, we were back in on the same day. I did tentatively check first that my good fortune wasn’t a result of his surgery being cancelled, but he assured me that it was some other poor soul who had given up their spot to me (hilariously, the day we were booked in for was a make up from a week before when surgery day was cancelled due to a power failure at the Hospital… you just can’t make these things up…).

Getting to have a pre-surgery catch up was a nice touch. I may have temporarily adopted myself to his parents, and they were kind enough to look after my things as I hopped around to all my pre-surgery meetings. I got to see Deepti (remember her? My surgeon, my bestie) and gave her a huge hug. I may have even squealed. Immediately, the excitement of having this amazing group of people back in my life washed over me. Though I will say, I hope their involvement wanes off now, at least in this capacity.

So I got in at 11am (after a couple of hours at work first) and promptly found my friend and we hung about, chatted, and were consented for surgery, had our blood pressure checked, etc. At around 1, he went in and I knew I would be after, but I also knew his would take a while. At about 1:15 they took me into a room to wait, took all my belongings, sealed them in a bag and put them in a locker. By around 2:45 they came back in and said it wouldn’t be until 4:15 and would I like my things to keep me company? While I enjoyed an hour and a half of just sitting quietly in my own thoughts, I wasn’t much looking forward to another so I thanked them and took my kindle and spent my time reading. 5pm came and they popped back in and said ‘they’re still going on the previous surgery, but should be finished soon…’

Half my mind was on hoping he was doing ok, his body has some issues with getting surgery, and the other half was on hoping they finish soon for my own personal reasons… how late does it need to get before they cancel the second surgery of the afternoon? To be honest, by the time it was after 5pm, I had pretty much convinced myself that the next time someone popped through that door it would be to tell me to go home.

Just after 6, Deepti came in, and it was all go! I put my kindle away and off we went, a quick wave to my friend’s parents as we went by, Deepti letting them know he was fine and would be out soon.

Let me tell you, it was very strange to walk myself to surgery. When I went in a year ago, I was not walking in, I was wheeled in. I thanked Deepti as we walked, so grateful that they were staying late to do my surgery. She said they had booked the room for longer than the standard hours, knowing that it was likely to happen. I found out later that the people in reception had been talking about whether I had been told yet if my surgery was cancelled. Not my team, they were there, making the magic happen. My angels.

People often ask if I’m nervous going into surgery. I’m not, not at all. I feel like there is a buzz about going into surgery, and this one was particularly exciting. It was for that final bit. I think we were all feeling it.

So let me do some explaining.

This surgery was a combined effort between my amazing surgical team who we met in a big way just over a year ago, and the wonderful people at Dawood and Tanner.

A couple of weeks ago, the people at D&T realised that I didn’t know much about what was coming up and after the first cancelled surgery, they brought me in and took the time to sit me down and explain what was to come. For that reason I’ve got pics that I can now share with you all.

This is my skull (3D printing is cool!):


And these were the plans for implants – they are called zygomatic implants, and we wanted three through the roof of my mouth and into my cheekbones:


So we went in to the surgery with these plans and models, and a ‘best case scenario’ but of course going in to surgery (or at least one this difficult), you never actually know what is going to happen.

Let’s just talk first about that fact that I hate going under anaesthetic. That’s not to say it’s something you should be worried about if you haven’t had surgery before, it’s absolutely fine. I just hate being ‘put’ under. I was super calm before, excited, the cannula went in fine, but right near to going under, I was still stressed – I think it was the point where they put the mask over my face and told me to breathe through my nose – of course I can’t breathe through my nose anymore, but I couldn’t tell him because the sedation was making me drowsy…

I thought coming out of surgery this time would be fine, with it being so much shorter than my other experience (and it was better, in so many ways), but I still woke confused, in pain, and with the same feeling like I needed to say something (I probably always think I need to say something). I couldn’t see anything as it was all blurry, people seemed to be bustling around. I remember at one point lying on the bed groaning. I think someone said ‘it went well’, was that Deepti? Was she there? I think I was reaching my arms out towards something, or at least trying to. I felt sideways, upside down. I kept blinking, hoping my eyes would clear and then eventually they did and who was standing next to me but Anna from Portugal – one of the nurses who first looked after me in ICU after my first surgery. This started the string of ‘wait, I think I know you!’ that kept happening over the next few days.

And that’s all I can manage for today, next instalment to come soon.

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.

Friday surgery retraction statement

You know… I probably jinxed it by telling you all it was happening…

But I got a call earlier in the week saying they ‘couldn’t find a consultant’ for Friday.

I don’t really understand what that means, I thought it was meant to be my surgeon, Mr K who did it. But I guess maybe not? Maybe it’s just a lucky-dip, nab an unlucky intern who can consult.


Though I wonder why they are so cagey about giving me details about things.

So I’ve now cancelled a few things I was planning on doing and the like, which is a bit of a pain but I guess I can’t really complain, I guess these things happen.

I’m grateful to have a date, but I do feel a bit deflated that it’s now been moved… But what can you do. On the plus side my recovery will now be during the week as opposed to over the weekend, so I’ll have to have a few days off work. I guess that’s something!

In other news, I was asked to speak a few weeks ago to the ‘Airway Management Hub’ at UCLH (pic below) about my experience with the dreaded tracheostomy (post surgery breathing tube, for any of you who aren’t familiar with the terminology). I had a great time (at the talk, not with the trachy), and was able to provide some input about the patient perspective. The tracheostomy is a pretty scary thing and I would like to be able to help make the process better for the people going through it, so hopefully more will come from this, I think there are some important conversations to be had.

Anyway, happy Friday, friends. Looking forward to sleeping all day tomorrow!

Off we go again…

Hello everyone, I know I’ve been quiet for a bit, it’s been cold, I’ve been busy and my parents have been visiting for a few weeks. I’ve been ticking along as usual, a few things you would probably appreciate an update on.

I had my clinic appointment a couple of weeks ago to get my MRI results and the day before I got a call asking if some of my blood could be collected for research. Yes yes yes yes research! Always yes! So I went along early to get my blood taken. There was a new staff member who was being supervised by another, but she assured me she was very experienced. Not that it bothered me too much but I gave my usual disclaimer that my veins are difficult. They assured me there would be no issue. Cool. We’ll see.

She tried one arm and found the vein but my blood didn’t want to leave me. Aww my blood has separation anxiety. Cute. She asked if she could try again. Of course. Better luck this time. She got the needle in my hand and it started slowly filling the tube but then it stopped flowing and started hurting quite a bit.

‘The vein is going to blow!’ She announced with a wavering voice. I looked at the other nurse and she looked at me with what looked like a slightly worried face. I looked down to see my vein bulging.

Wait, did she say it’s going to… ‘Blow…?’

‘It’s bleeding under the skin… I need get it out…’

Ya… safe to say the blood rushed away from my head then. Or to it? Either way I felt very hot and faint. I’m sure that’s a perfectly normal thing to happen but it’s just not what you need to be told when you’re already in pain and stressed. So she stopped and I lay down.

Then of course I was annoyed because I had failed at helping with research. Lots of apologising from them, from me, good fun. I went and had a little cry in the bathroom, stressed by the situation and frustrated that I couldn’t help. I went back out to wait for my clinic appointment and a little while later the nurse came and apologised again (as did I) and she gave me a haematology pin to say thanks. That was sweet, I like pins.

I made a friend while waiting to see my Oncologist, he had also had a face sarcoma. Twice. We were laughing about all the random body parts we have in our face. It’s a strange club to be in. You know you’re with people who get it when you can call someone ‘greedy’ for having cancer twice and have a laugh about it.

Everything went smoothly with Mr Onc. ‘Nothing in your lungs’
‘Oh that’s good! But I thought you said…’
‘It looked like something but it wasn’t. Or at least if it is, I don’t know what it is yet so I’ll see you in 3 months and we’ll look again’
Ha. Good. Bye.  ‘I like not seeing you very often’ I said as I shook his hand and scurried out.

He also said to me ‘this summer will be two years since diagnosis, won’t it!!’ I didn’t believe him and said ‘No surgery was only a year ago’. He looked at me weirdly and was like ‘yes…… And you had treatment before that……’  LOL yes he’s right.

Well apart from that, I’ve got the first of my teeth surgeries on April 12th. We’ll find out then what will be possible (I think? It sounds likely…) and then hopefully if I’m lucky and everything goes quickly and according to plan, by the end of the year I might be ready to look at some sort of teeth thing! Though that’s probably being a bit hopeful, these things usually take a lot longer, mainly because it takes so long to hand write, print and send letters in order for any process to get moving.

Yes this is good news, and I’m so glad to have some progress! But I’d rather avoid comments of ‘that’s amazing, soon you’ll look all better’ and the like. Or ‘wow teeth in April!’ Because it will still be a while until I actually get them, whatever they may be. I don’t know how I will look, I don’t know how much they can do (if anything), and although I am optimistic for the best, I need to manage expectations, both yours and mine. So we’ll see. Progress is good. Let’s see what happens next in this crazy adventure shall we?

Hilariously, I went along to my ‘pre-assessment clinic’, which I thought would be when I’d find out what they’re going to do in this surgery I’ve got coming up next week. But the nurse and anaesthetist who were running the meeting were asking me questions like: ‘Who is doing your surgery? Are you staying in overnight? What are they planning on doing?’
The anaesthetist even asked how long my surgery was meant to go for! Ummmmm………. You’re asking ME? Well that’s reassuring.

No one has told me anything about this surgery, I was kind of hoping that they were going to at this meeting. I hope by the time I get there on Friday they’ve worked out the answers to those questions because if not, well… I might end up with an amputated leg, or less one kidney or something. I guess I don’t really need two kidneys if it comes to that.

What I have pieced together from talking to random (non medical) people around the place is that they’re just going to drill in a bit and cover it back over for 6 months. But I guess I’ll let you know in a couple of weeks if that’s the case. I have no idea how disruptive it will be, how long I’ll be in hospital (I think just the one day?), or what the recovery will be like. I hear it will be swollen and sore but obviously nothing like what I’ve already been through so I’m not too bothered.

I’ll keep you all posted! Until we next speak, have a great week!

International Women’s Day

I realise I’m slightly behind the ball with this, as normal, but I have a few things to say about International Women’s Day.

I know this isn’t strictly cancer related, but it is life-with-cancer related (because it’s related to all life!) and my tribe of girls I have found through cancer are just amazing, I can’t even begin to explain how much they mean to me, or how supported and accepted they have made me feel.

But I guess I should start from the beginning

I have never associated with being a feminist. And I think for a long time ‘feminist’ has been a bit of a dirty word.

Feminists were those who complained that anything bad that happened to them in life was because they were being discriminated against for their gender. Every promotion they missed out on was due to the glass ceiling. They were women who looked for anything untoward and blamed the patriarchy. They were loud, they were aggressive, sometimes they were on tv with scowly expressions and posters. I saw feminists as people who hated men and thought they deserved to suffer to make up for the oppression faced by our fore-mothers. I thought ‘we’ve got everything we need, now you’re just going too far’. Obviously I say this from a place of great privilege, I know. And it would be a point to make here that I could not have had that view were it not for the AMAZING women that came before us that did so much to get equality.

Back when I worked in the Australian Government, the women of the office went to an International Women’s Day luncheon. Only the women of course, no men were allowed to celebrate International Women’s Day – I don’t know if that was their choice or if it was thrust upon them… maybe a bit of both. But sure, free food and an excuse to not be at work for a few hours? I’ll take it. Part of the festivities was watching a debate and it was something along the lines of ‘women make better leaders than men’. That already got me offside. One person was from the Army and she spent her 4 minutes going on about how men are terrible and how we should get rid of them all and how the world would be a better place without them etc. I looked around uneasily… were people enjoying this? People seemed to be smiling and even cheering. I feel like someone surely stood up on the table at one point and shouted ‘I a woman, hear me roar’ to a chorus of applause. Ok that didn’t quite happen, but you get the picture.

This didn’t feel like the quest for equality and inclusivity I was searching for in feminism and so for many years I abandoned the whole thing. I didn’t really think I needed it anyway.

I have never felt that I have been held back because I am a woman, I have never felt like I have missed out on anything. I was always brought up believing that if I wanted to do something I should just work hard at it and do it, and that has been my life mantra – I’ve never let anything hold me back. To be honest gender has never been a big part of my life or identity. I’ve never really felt like a ‘girl’ and the only time it was pointed out was when we had gender-segregated classes in sport (which I was pretty happy with actually, though not with the fact I had to play ’sport’), and then again when playing drinking games at uni and there was a ‘girls drink’ and a ‘boys drink’ category. I always did both because I couldn’t decide on one over the other. I’ve never really been a girl, I’ve always just been a Jen (hey, that’s pretty much non-binary, before it was even a thing!).

I’ve always seen it as either ‘me’ and ‘them’ or all of us together, but I never felt like ‘one of the girls’, I felt different. I also never had a big group of female friends. No girl gang. I had (and still have – you know who you are) some close female friends, but apart from that I got along better with guys. My friendship groups always consisted mostly of guys and I didn’t really understand girls, they often confused me. They were into things like makeup and shopping. Ew.

This is where I inadvertently get all my female followers offside… Please bear with me.

I remember a short while ago saying to someone ‘most of my friends are guys’ and they looked at me oddly. ‘Jen… pretty much all of your friends are girls…’

Oh. I guess you’re right…

Life is full of the stories we tell ourselves, isn’t it? Well it seems without me realising that my story has changed.

I have found myself held up and supported over the past couple of years by my girls, and I have formed some really deep connections. There have been some wonderful guys too (you know who you are), but for the purpose of this post I’m going to focus on my girls. I hope this isn’t the point where I get all my male followers offside, thinking I’m going on a feminist rant or something…

I am still learning what feminism means and what it is to be a feminist. I think in 6 months time I will be further along that track and will be able to write a far more astute and pithy analysis, but this is what I have learnt so far (some are personal, some are general observations or things I’ve picked up from other people’s experiences. Any resemblance to actual persons, living or dead, might be true or might not).

Feminism is about having the confidence to be the you that makes you happy, not the one that society has told you that you should be in order to fit in.
It is about lifting up other women and supporting them, not cutting them down out of jealousy.
It’s about fixing another woman’s crown before the world knows it’s crooked.
It’s about not staying quiet when your ex tried to tell you that ‘wolf-whistling and cat-calling shouldn’t be stopped, that men deserve to have freedom of speech always and women shouldn’t complain because it’s not physically hurting them; if it makes you feel scared or uncomfortable then you should stop being so precious’.
It’s about speaking up and standing up for yourself, even if it gets you labelled ‘crazy’ or ‘bitchy’.
It’s about pushing your doctor to diagnose you even when they call you ‘hysterical’ just for insisting the immense pain you’ve been in isn’t stomach cramps for the 8th month in a row.
It’s about not lying down and taking it every time someone jokes that you shouldn’t be in the office but should be at home cooking and cleaning (‘what’s the only thing a woman should wear out? The path between the kitchen and the bedroom’ oh har har. Yes, I have been told that by a co-worker).
It’s about not accepting when a colleague treats you terribly and you get dismissed as being ‘too emotional’ and told to calm down.
It’s about being a leader and not fearing being called ’bossy’ for taking charge.
It’s about shirking the societal pressures that the only way you can be happy or feel fulfilled in life is to find a man and have a baby.
It’s about deciding not to sit with the lads at lunch time while they leer at every girl who walks past and talk about what they would like to do to them, just because you want them to think you’re ‘a cool chick’
It is about being healthy, but not propagating the idea that females must be slim, hairless and ‘perfect’ all the time.
And if you don’t want to wear heels, don’t.
It’s about embracing perceived imperfections and showing vulnerability.
It’s about putting time into the loving relationships you have with your friends. Romantic love isn’t the only kind of love that means something.
Feminism is about making best friends in the bathroom at a club and exchanging phone numbers.
It’s about not telling someone to their face that you like them and then complaining about them behind their back.
It’s about not pointing out another woman’s flaws.
It’s about not having to deal with a male colleague saying to you ‘you look hot today’ as you awkwardly smile and wish you could sink into the carpet.
It’s about not saying to another girl ‘are you ok? You look tired today’ just because she isn’t wearing makeup.
It’s about teaching young girls in sex education at school that women’s pleasure is just as important as men’s.
It’s about just being a boss not a ‘girlboss’ (why does being a boss need to be defined by your gender?!)
It’s about blocking and reporting that person online who says you should ‘go kill yourself’ or that ’someone should rape you’ just because you express a different opinion to theirs.
And it’s about corporations like instagram and twitter taking such things seriously.
It’s about not having to be ashamed of having a period, not having to hide the fact like it’s a dirty little secret.
It’s about encouraging women to stop apologising all the time for things that are not their fault.
It’s about breaking down the ideas of what is and isn’t considered ‘lady-like’.

It’s about getting to a place where all of these aren’t daily pressures that women have to deal with. And so much more. And I think everyone, women and men alike (and everyone else who doesn’t fit within those confines) can agree that there’s nothing wrong with that, right?

Feminism is about supporting women, not about being aggressive and shouting ‘Patriarchy’ and burning bras. And it’s something that should be important to all genders. If you’re interested in knowing more about what feminism really is, check out ‘Feminists Don’t Wear Pink’ by Scarlett Curtis (the book and the podcast), and if you have Audible, please check out her 5-part series for International Women’s Day called ‘To The Woman’. She and her friends can iterate these thoughts much better than I can.

Thanks to the love and support of the females in my life, I finally feel like I’m finding a space to be me, where my opinions matter, where I am accepted for who I am and where I don’t need to always try and put on an act to be liked. Of course there will always be girls I don’t get along with, but I have met a LOT over the past couple of years and I haven’t experienced anyone being less than amazing. I honestly don’t know where I would be without all my babes.

So to all my girls, I just want to take this opportunity to say:
A part of the human condition is to feel like everyone has it sorted and you don’t
Like you’re the one who doesn’t fit in
And I have often felt like I don’t really fit in
Like everyone is having the fun and I’m not invited
Because I’m not as cool as everyone else out there and I’m lucky if anyone puts up with me
But you girls… All of you girls I love…
You make me feel like I might belong somewhere.
Like when people talk about their ‘tribe’
You are mine.
I still think you are all too cool for me
But you all show me what is important in the world.
It’s you.
It’s us.
We’re braver together.
I can’t even put into words how much you all mean to me.
I love you.

Talking about cancer…..

You may have already seen, you may not have – Macmillan have recently launched a campaign centred around discussing cancer and moving away from using the standard cliches. They got a whole lot of people together who have/had cancer to read out some common reactions we all tend to get from people and then react to them on camera.

You can see it here:

I am well aware that my main contribution to this is eye rolls… Know your strengths and all. Some really brilliant people in this with some great opinions.

The response to this amongst the cancer community has been overwhelming. It has started so many wonderful conversations, and everyone is very much in support of it. Last I heard it had reached 28.5 million people, but I’m sure it’s more since then.

I think Macmillan have been quite brave in posting this. Some people aren’t going to get it. And there has been some backlash from people who are defensive of being told they’ve said something wrong, who grumble ‘I won’t bother saying anything to you then’ (and I think I’m probably opening myself up to these reactions too). But people who think that aren’t listening. That’s the whole point of this campaign. To share our views. To put it out there how these phrases can come across, and the pressure they put on us to fit into society’s ‘healthy’ mould and denial of anything bad. This is constructive criticism, not a witch hunt! This is us getting the opportunity to open up about how we feel about the words used by the media and society. We are not calling out any one person, we’re not saying anyone doesn’t mean well, we are trying to educate the world on what it’s like for us. We know a lot of people have never had to speak to people with cancer before (neither had we!), so it’s exciting to be able to have these sorts of conversations. And let me add at this point that this whole campaign is based on a survey of 2000 people with cancer, looking into what words/phrases they do/don’t feel comfortable with.

I know I’ve talked about it a bit before, but I would like the opportunity to discuss all of this in a bit more depth. But let me say up front that if you read this and realise you have used some of these words or phrases, don’t think I am blaming you. Please don’t take offence, just listen. Use this as an opportunity to take onboard the thoughts of us folks who are amongst it all. You can help to propagate better language and lift the pressure we feel. And we will thank you for it!

Quick disclaimer, some of these things I am discussing have not been said to me, but people I know have had them a LOT. So they were worth a mention. Some of them might even make you chuckle at the thought anyone would think of saying them!

So much of the language people use around cancer is forcing certain emotions on the person with cancer.

Telling someone that having cancer is a ‘journey’ is telling them they must enjoy it and grow from the experience. It’s telling them you only want them to say how great it’s been as opposed to speaking the truth of what they’re going through. ‘Experience’ or ‘story’ are much better words, even ‘ordeal’ is a good one. I like ‘adventures’ or ‘escapades’ so for me those words are fine, but think twice before telling someone being treated for the worst illness they’ll have is some sort of journey. As Mandy says in the video, a journey should involve a plane ticket, a passport, and a cocktail waiting at the end. Not an IV of cytotoxic drugs, extreme illness and surgery. As we learnt from Victor Frankl, there is meaning in suffering. Far be it for us to deny that positives come out of the experience. But to be told that it must be a journey and we must grow as individuals and be grateful for the insight is hard work.

Be positive’ is one of the most dismissive things you can say. Yes, it definitely helps during treatment for your general mental health to stay optimistic as opposed to wallowing in the bad things and the ‘what ifs’. But if someone tells you some bad news, or mentions that they’re finding it hard, don’t dismiss their concerns by just telling them to ‘be positive’ as opposed to actually listening. It is saying you don’t want to hear anything about it, and that they must always hide the realities they face that cancer can kill and the treatment and surgery is scary.

Actually the other day someone I know messaged me saying ‘Getting up to the usual shenanigans now you’re all better?’ I said I don’t know about ‘all better’, I’m still kind of still in the middle of it with two more surgeries to go. And I’m only just building up some strength. But i’m doing ok. They then proceeded to say to me ‘well I’m going to be positive even if you’re negative, I’ve had a bad year so I can’t take your negativity. I’ll send you positive vibes, maybe they’ll help you.’ Now I’m all for positive vibes, send away. But I didn’t realise I needed to lie to make you feel better… Noted to edit what I’m allowed to say to that person. And I hope you guys know I’m not ‘negative’ purely for being realistic.

Did you know that cancer is a chronic illness? For example I am now covered under the disability act for life. For most of us there is no such thing as ‘all better’, there is no ‘full recovery’. And a lot of us struggle more when treatment finishes than we did even during it. We have to face fatigue like never before, varying degrees of anxiety and depression, some people get PTSD, and there are a lot of physical things you used to be able to do that chemo takes away from you. Yes, permanently. And ongoing problems from surgeries, etc. And certainly with my type of cancer, there is no such thing as ‘remission’, we just keep checking and hope that at the end of 5 years it hasn’t come back. A lot of people struggle with being told by people they’re ‘all better now’ just because their cancer is removed when the reality is that they still have a lot of issues to be dealing with. You get so much support as you’re going through it, and as soon as people deem you as ‘all better’, the support stops right when you’re really struggling. The pressure to seem ‘all better’ makes people feel isolated especially and unsupported. Chronic illness is a lot more complicated than ‘sick now, better now’.

It puts a lot of pressure on us when we’re told to ‘stay strong’ all the time. It’s telling us that we must never show weakness, struggle or vulnerability. I think people often use it just to say ‘I’m thinking of you’, but it leaves us thinking ‘I didn’t realise I was being weak, or if I am, that I wasn’t allowed to be’. There is nothing ’strong’ or ‘weak’ about being treated for cancer, we’re all just coping as best we can.

I met someone the other day and mentioned I had cancer (lol yep apparently I’m that girl) and she immediately said ‘oh you’re so strong’. She didn’t even really know me, I had spoken to her for a little while at the pub… What was it I did that was particularly strong? Maybe it was for the fact I had drunk three pints? 😛

I know some people who feel like they keep getting lots of empty compliments since they got cancer, because ‘you can’t say anything bad about the cancer person’. But I think this feeling stems from the fact that we are called a lot of these words purely for the fact we have a disease, and we aren’t particularly any of the things we keep being told we are. It makes it all seem a bit empty.

I never liked ‘fight‘ from the beginning. I wasn’t sure why it was my role to cure my cancer by doing some unspecified amount of fighting. I wasn’t really up to any sort of boxing match, I didn’t sign up for UFC. As a friend of mine who is an advocate for getting cancer drugs to patients who need them says ‘just relax and get your chemo. Leave the fighting to us’. Telling someone to ‘fight’ their cancer is telling them it’s their own responsibility to cure themselves. Now, I am aware that this is one that really divides people. I get that some people like to think they’re taking control of they situation in a world where you lose all control. I get that thinking they can fight their own cancer implies action and control.

But by continuing to use this language, the pressure that is put on people who get a terminal diagnosis is immense, or anyone who gets bad news (like chemo not working or their cancer returning, which is a possibility for all of us). The media loves to use the headline ‘Lost their battle’ when someone does die of cancer, thereby saying they are a failure, a loser just because they were never able to be cured of it. That they didn’t fight hard enough to save themselves. People with cancer already have enough guilt for putting their loved ones through all this, without also being constantly told it’s their own fault for lack of fighting. We never say people lose their battle with a heart attack, why do we say people they lose their battle with cancer?

This also paints people with cancer as victims, and the last thing we want is pity. We’ve all had someone do the head tilt and say ‘Awwww‘ when we mention we have cancer. Yes it sucks, no we don’t want this, but we don’t need to be pitied.

Also please, I don’t want to know that you sister’s aunt’s dog’s wife had cancer and died. Why is that ever going to be a good thing to tell someone who is diagnosed with cancer?!

Brave‘ is often followed by ‘I couldn’t do it’ and implies that we have some sort of a choice.  Choosing to do something that others find scary is brave; brave is an emotion we put on people in line with our own fears. Having an illness treated to delay death is not brave, it’s living. I’m ok if you think I’m brave for going in front of a camera or recording a podcast or playing a gig or moving country because I understand that it’s something you are scared of and wouldn’t want to do. I absolutely love it, there’s nothing brave in my choice to do it. Whereas I think you’re brave for deciding to run a marathon. But you might not, it’s something you happily decide to do. Are you getting the picture? As soon as you say it to someone who is just living whatever life they’ve been given, it’s pity. Some days I push myself out of my comfort zone and do things that scare me, but that’s making a phone call (terrifies me!) or asking for help. But having cancer or having the treatment you’re given has no correlation with being brave or not.

Also saying that you couldn’t deal with all these needles because you have a needle phobia? Or maybe a fear of hospitals? And you don’t know how we do it? Well we don’t either, we also have a needle phobia or a fear of hospitals. We’re no different, we just have to manage somehow.

I would hazard a guess that a societal history in telling children to be brave and not complain or cry has had an unintended negative side effect of making (especially) men think they can’t get help for symptoms of depression. Of course this then translates to suicide being the single biggest killer of men aged under 45 in the UK, with 75% of all suicides being male.

Inspiring‘ is an interesting one. I know a lot of people struggle with this, none of us feel very inspiring for the sole fact that we are going through cancer treatment. But I do like to think that some of the things I write might inspire someone. That I inspire for the things I do in the face of adversity. But I know ‘inspiring’ can be seen as a demand that the person with cancer must always inspire as they go through it. I know people with disabilities don’t like to be told they’re inspiring just for trying to live their life, this picture springs to mind:

Survivor‘ is also problematic. My friends who have terminal cancer, are they not survivors? Or are they survivors until they die? Do you only become a survivor if your cancer goes away? ‘A person who had/has cancer’ is a better phrase. Or someone who is ‘living with cancer’. You might not realise, but people live with ‘terminal’ cancer for many years these days. 1, 5, 10, 15 years… and it’s only getting longer as treatment gets better. Now that people are no longer just being cured or just dying, we need to change this terminology. You don’t necessarily ‘get better’ and become a ‘survivor’ but you might not die either.

Do you see how emotive all these words are? You’re either a winner or a loser. Either a warrior or a coward. Either strong or weak. A survivor if you’re cured or… dead, I guess. Nothing in the middle. It’s tiring! And we seem to spend a lot of our time managing the emotions and feelings of the people around us who use these overly emotive words all the time. We just want to face the facts and take one day at a time and we’re suddenly being told to be positive or happy or devastated or strong or whatever when we really just want to manage emotions instead of becoming overruled by other peoples’.

We also don’t want to know about a scientist in Israel you heard about who has a miracle cure that works on every type of cancer, these types of articles are usually based on theoretic/experimental techniques in one strain of cancer under laboratory conditions, and is usually only a potential. Even if a miracle cure is found, it will take a long time to get to the market because a LOT of testing and research needs to be done before it can be given to humans. These types of articles play with our emotions, we are working towards better conditions for people living with cancer, not for a cure. Also don’t tell us that we should be eating lots of Kale/turmeric/cbd oil instead of chemotherapy. ‘Have you tried…’ is never welcome, we are doing the correct medical treatment for our cancer, it’s patronising to assume we’re not doing everything we can. And don’t even get me started on ‘did you know the government has a cure for cancer but they’re hiding it from us’. Yes, people legit say that. Or blame it all on ‘big pharma’.

Don’t tell us ‘aren’t you too young?’ – We know. (Actually while almost everyone I know gets this one, I don’t, as the demographic for my cancer is children and dogs so…)

Don’t ask what we did to cause our cancer. No I didn’t smoke and no it’s not genetic. There is no known cause for my cancer. It is nothing I did, it is not my fault. I know you want to know what I did that you can avoid but unfortunately cancer doesn’t work like that and you can’t cancer proof your life. You are just as likely to get it as I was, I’m afraid.

All right. That was a lot, I know. Which leads us to……..

So what should you say? Unfortunately there is no easy answer! I know, we don’t make it easy do we!

Listen to the person to see what words they are using rather than putting your own words on them and deciding what they must feel.

Ask someone how they are and listen, rather than tell/ask them if they’re all better.

If someone is worried about scan results, don’t tell them it’ll be all fine thus berating them for worrying. Rather acknowledge their fears, remind them they don’t know until they know and that you’ll be hoping like hell for the best.

Send love, and hugs, don’t send prayers unless you know this is what they want (but do whatever you like in private). If you know the day of something big, tell them you’re thinking about them that day.

How we feel is so personal, please don’t decide for us.

And please don’t pity us.

If you’re not sure, just ask! I won’t bite and will be more than happy to discuss why some things might come across as insensitive. And you know what? I don’t always know what to say either! I just try to listen and adapt to each person. I’ve got one friend who likes people to say ‘I’m so sorry, that’s really shit’ in response to her bad news, and other who hates people saying ‘I’m so sorry’ because she feels pitied. But I listen to everyone and make an effort to remember what they prefer and speak to them in ways that will support them. And if I can do it with a hell of a lot of friends with cancer, it shouldn’t be too difficult to do if you’ve only got one or two.

It is also ok to say you don’t know what to say. Sometimes it’s hard to find the words or know the right way to react so if someone tells you they have cancer and you don’t know what to say, tell them that! It’s a way better alternative to saying nothing.

I would never blame anyone for saying ‘the wrong thing’, I know people mean well, but I want to transform the way we talk about cancer and chronic illness as a society to make it easier for those who are going through it. For so long illness has either been something that you get better from or you die. So it absolutely makes sense that so many of these thoughts and phrases have been the go-to. But it’s no longer the case, people are living with chronic illnesses now, since medical advancements have led to us living for so much longer post diagnosis.

Let me also add, more just as an interesting note, I have heard quite a few of these words and phrases being used for people with other illnesses and disabilities, including diabetes, and most recently my friend’s husband has had a lot of these things said to him after finding out he’s got some heart problems. So tackling this in relation to cancer has practical applications even way beyond the realms of the 50% of us who get cancer.

If you want to hear more, I spoke a bit about the campaign twice on BBC radio (though I’m sure most of it is overlap to what I’ve just written):

I was also in my local newspaper, though they managed to sneak ‘survivor’ in there.

If in doubt it’s safe to steer clear of saying:
Oh you have cancer? My aunt had cancer and she died. What caused yours? You’re so strong, you’ll beat this. You just need to fight, then you’ll be a survivor and you won’t lose the battle. Don’t say you’re scared, you’re an inspiring brave warrior. And don’t worry at all, just be positive!

Well hi!

I’ve got a couple of posts lined up for you but I thought first, since you haven’t heard from me in a while, I should give a quick update.

Though to be fair the reason you haven’t heard from me for a while is because I literally have nothing to update you on.

Well that’s a lie, since we last spoke I bought a flat and moved in on my own for the first time ever! Nothing like cancer to give you a mid (1/3?) life crisis. So yeah when I said I have nothing to update you on I actually mean I did one of the biggest things you will do in your life. So that’s fun!

I was told my first implant surgery would be Jan/Feb. Over Christmas I was cc’d in on a letter from the teeth man to my local GP that said they would be aiming for February. Well… It’s now mid Feb and I haven’t heard anything so I guess that won’t be happening…

I met someone recently who had a similar surgery to me and has just had his first implant surgery. So I got some details from him about the process. Basically it’s done in three phases. The surgeries are quick, but they are done under general anaesthetic. There will be approximately 5 months between the first two surgeries and hopefully not too long between the final two. So I’m hopeful I might have some sort of teeth thing in around 6 months from first surgery. When that will be I couldn’t tell you. I really hope I get teeth by the end of the year…

More limbo, more of the waiting game. I’ve been busy while waiting though, details of which I will share soon.

Today I went in for my 3-monthly chest xray and quick hello to my Onc(ologist). There’s some sort of familiarity with coming back to the Cancer Centre, but also a strange detachment from the place that was practically my second home for so long. Just as I was waiting for my xray I looked up as the lift came down and to my surprise I saw my friend Krista, who has just finished her chemo for osteosarcoma in her leg! We had a quick catch up, she’s in for immunotherapy every week.

So the chest xray is every three months – the most common place for osteosarcoma to spread to is the chest so they monitor it closely. How are my xrays looking? Well they’re not clear… There’s been something showing up in the xrays since mid last year (yeah I’ve known about it for a while), so more CT Scans and MRI to see what’s going on. Could it be cancer metastases? Yeah it could. Is it likely to be? We don’t think it looks like typical mets but the only way to be sure is with scans. So bring on the scans!  Either way I have some damage to my lungs, so that’s fun! I don’t feel compromised, so hopefully nothing too serious.

I hope you all have a lovely weekend planned! I’m off to the theatre tonight!