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.
http://islingtontribune.com/article/upper-holloway-cancer-survivor-advises-on-what-not-to-say

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!

Well… Here we are again…

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy New Year everyone, just keep being wonderful you.

Hello all!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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.