Tag: cancer

Well hi!

On By Jen EveIn scans, Tests3 Comments

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!

Hello all!!!!

On By Jen EveIn Thoughts6 Comments

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…

On By Jen EveIn Friends and Family, Reflections7 Comments

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.

Teeth talk time

On By Jen EveIn teeth4 Comments

I thought it really was about time I did a teeth update.

So I’ve been going in to trial some teeth to see how they will look. A couple of weeks ago I went in ready to try some teeth on for size, I sat in the chair, and I put the teeth in. Now they don’t stay in on their own, I can’t talk or anything with them, but if I keep my teeth together then they stay in place. They gave me a hand-held mirror, which I sat on my lap as I put the teeth in, eventually putting it up in front of my face once they were in place and… well… I think watching this clip will give you an idea of how it went. This is an actual, exact re-enactment of how it went (must watch this before reading on)…


Yep. OK so they weren’t quite that bad, I slightly jest. But they were big. I felt quite strange. Actually it was quite demoralising, not going to lie. You pin all your hopes and dreams on looking a bit more normal with teeth and you see them and all you can think is ‘they’re not my teeth… Who’s teeth are they?’

Dwayne’s apparently.

I was clearly unhappy and the dentist and her assistant were telling me they looked good but I just didn’t feel right. She said ‘it’s probably just been so long that you’re used to seeing yourself without teeth and now having them there again seems weird. You’ve probably forgot what they looked like.’ Not a damn chance. ‘You’ve never had your teeth out and your face rebuilt’ snapped petulant teenage Jen who was lurking somewhere inside me. I felt bad saying it, but it’s true. It maybe seemed like the right thing for her to say but no, I don’t forget exactly what the teeth I have had for 30 years looked like just because I’ve been 9 months without them.

It was hard to tell how much of my dissatisfaction was just in general with the fact I’m going to look different now anyway no matter what, or whether they really were too big. But it felt like something worth fighting for. Although they told me big teeth are beautiful and they look fine, I was adamant that I needed smaller teeth. Well… I say adamant, if they were to tell me that smaller teeth wouldn’t work, I would learn to live with whatever I had to. But they agreed to try again and we booked in for me to go back the following week to try a size smaller. I didn’t feel great when I left the dentist surgery that day.

I worried of course that I wouldn’t like the smaller teeth either and I would have wasted their time and made a nuisance of myself. I almost feel like they’re a private practice and I’m a charity case (i.e. NHS), like they’re doing me a favour for treating me and I should just be grateful and do as I’m told. They don’t make me feel like that in any way, but I can’t help but have that thought in the back of my mind. I am so grateful to them for treating me, I know how lucky I am.

Anyway, cut to a week later. The weather had taken a turn for the worst, the day was cold, dark and rainy. The previous week had been sunny. Was London feeling my worries too? Mirroring my apprehension?

I sat in the chair again, held the mirror, put the teeth in, tentatively pulled the mirror up in front of me and smiled. Like… Smiled. Not just moved my lips back to reveal my teeth, I really smiled. They were my teeth. I felt relief wash over me. The dentist and assistant agreed, these were the ones. In fact the dentist said she was glad that we went for smaller teeth and that she has to remember that they’re my teeth. It’s a good point. Maybe the big teeth do look better on paper but it’s important for them to look good on me. That I feel comfortable.

She took a couple of photos and showed them to me. They were difficult to look at because it showed me how little of my face the teeth would actually fix, and how snarly I’m going to look, but hey. I’m going to have to come to terms with that eventually.

I should just interject here, someone said to me the other day ‘please don’t think I’m being an idiot, but didn’t they take moulds before surgery so that they would have something to base your teeth on?’ Not being an idiot, though I can see why you might think so for asking, you would think it would be the obvious thing to have done, but no. The dentists wanted moulds, but I guess it wasn’t something my surgeons had thought was an important thing to do before knocking my teeth out. I think in future it would be a bit better if somehow that process could be ironed out for any others going through a similar thing. It only takes a few minutes and would make such difference for the process later.

Now they’re starting to think about implants. They’re not confident they’ll be able to give me many, maybe a couple. But fingers crossed they’ll be able to get at least one in, because that will mean they’ll have something to anchor some dentures to. Otherwise they said they can look at implanting a piece of metal in my new top jaw and holding some dentures in using magnets. They’re aiming for surgery in Jan/Feb.

So here we are – angled and smiling, so it doesn’t look too bad…

I give you my trial teeth!

The joy of ongoing appointments

On By Jen EveIn Recovery, Tests8 Comments

I was talking to someone the other day who was saying that going back to the Macmillan Cancer Centre for appointments is something she fears and finds upsetting. And I get it, there can be a certain sense of PTSD with these things, and constant reminders of the trauma isn’t necessarily what you want.

But my views could not be more different.

I remember the first time I walked into that building. Hanging from the ceiling in the foyer is a colourful art display of things picked up on beaches across the UK. From toy spades to flip flops to plastic straws to plastic crates and any other number of things. You could sit for hours gazing up at all the things hanging there, and collectively, I have.

I remember the first time I met all the smiling people who told me they would look after me. The oncologists who said they knew how to treat me. I remember the joy I felt at being in safe hands.

I remember going back every treatment week to catch up with everyone and start another session to cure me. All the people who were working together to give me the best chance at living. The laughs I had with my pharmacist, the smiles from Ambulatory care when I showed up for my chemo. We would debrief on our weekends.

I remember finishing chemo and being transferred over to my surgical team. The same building, but clinic was over the other side. You would think it would mirror the oncology clinic since it was the same floor but it didn’t. It was similar but not the same. But the pattern on the floor was the same – a colourful mosaic designed by the man who designed the Sgt Pepper Album cover. Can you imagine?

Even after surgery I didn’t feel on my own, despite being cast out into the big wide world – I had appointments to come back and see everyone. They still cared, they were still looking after me.

These days I get to come back for Oncology clinic every two months, and a chest xray to check it hasn’t spread to my lungs. I know some people would use that as an opportunity for anxiety that their cancer has come back and they will therefore soon die. I approach these appointments with excitement. I’m so glad and grateful that they keep monitoring me so closely and I quite enjoy getting told every couple of months that everything is ok. And if there is a day when it isn’t, well I couldn’t be more happy that they had kept checking.

The Macmillan Cancer Centre is also where I have access to my psychologist, as well as complimentary therapy (e.g. Massage and reiki *eye roll*). It’s where I can pop in to the ‘Living Room’ to make a cup of tea and probably make some new friends if I feel like it. It’s where I could attend support groups if I needed them.

This is the place that has taken me in, looked after me and hopefully saved my life. That keeps providing love and support, even now. That has somewhat been my second home over the past 18 months. That is filled with people who care about me and my well-being. What an amazing place to have! Why would I fear going back? Why would I get anxious each time they show they are still looking out for me? Why would I be angry at the smiling faces of people who’s job is to help me?

Every time I go back I am reminded of how lucky I am and I smile. I smile for all the good I have experienced over the 18 months, thanks to this very place.

That transient little thing called life, held in the hands of others, human and otherwise…

On By Jen EveIn surgery4 Comments

I want to take a moment once again to talk about my surgeons. Well, all surgeons really. But mine in particular, those in each of my surgeries who took it upon themselves to take my life in their hands, to do everything they could to give me the best chance of survival, and with it, put themselves and me at the mercy of luck.

Of course the incredible skill of my surgeons is the main factor in it all, there is no taking away from that. They worked hard to get where they are and they are incredibly skilled. It is down to them personally that such a good job was done. But it would be remiss of me not to acknowledge the huge part that luck also plays.

Before going into the surgery people would say ‘good luck’ to me and I said thank you but thought to myself that it had nothing to do with luck, it was down to the great work of the surgeon. I thought if anyone needed luck it would be them, but hoped that it wouldn’t be down to luck that I survived it and the outcome was favourable!

But I realise now that is a bit of an oversight. The French surgeon René Leriche once said that ‘Every surgeon carries within himself a small cemetery…’ Not necessarily just for patients who didn’t wake up, but for those who ended up with additional damages.

Surgery is insane. We’re doing things now that we never would have even attempted in the past. Think about brain surgery for example – the amount of risk involved there is scary. But these people take that risk on, knowing that your death or paralysis could be at their hand as opposed to the tumour growing inside the lump of flesh sitting in front of them.

So while giving due praise to the skill of the surgeon, it would not be fair on them to put all the onus of your survival on them, sometimes things just go wrong. Sometimes mistakes are made. Sometimes no mistakes are made but still things don’t work out. And unless it’s done with malicious intent (you occasionally see those stories in the news), or significant negligence, nothing that goes wrong can really be blamed on the surgeon, though I’m sure they often blame themselves. In fact author Adam Kay gave up being a surgeon after a (non consequential) mistake at the end of a very long shift that could have ended in disaster but did not.

Some surgeons are egotistical narcissists with no people skills – that’s the stereotype, isn’t it? Inflated sense of ego instilled from playing God on the regular. Others are humble and great with talking to people, or even writing their experiences down (some brilliant books out there written by surgeons). But either way, no matter what their personality, style or people skills, they are taking lives into their hands, weighing up the risks and deciding to give it a go. A very educated and practiced go. But a go, nonetheless. They are still human.

It’s a bit difficult coming together from both sides of the fence. Us as the patient, and them as the surgeon. Us, them. We want answers, we want progress, we want things to be fixed now. And you know me, I’m always on the go, patience has never been my strong point. From their point of view, it’s good to wait and get stability, and let’s be real, although scar tissue in your lip that makes you look ridiculous when you get teeth is disheartening as a patient, what does it really matter?

Patients can seem demanding, difficult, ungrateful and pushy. Most of which stems from an underlying place of fear. Surgeons can seem despondent, haughty, dismissive, defensive. Most of which stems from just being busy (you’re not their only patient) and also an underlying place of fear. Fear of not succeeding, fear of their work being pulled into question. The brain surgeon Henry Marsh described it as ‘morbid fear’ that he gets before surgery, but which dissipates when he picks up his scalpel – no time to be afraid, a job to get done.

We like our surgeons to be confident. But can you imagine how much of a blow their self-esteem could take if something went wrong? I get that if I write a post that doesn’t resonate with someone. Suddenly I think ‘oh I’m terrible, why do I even bother’. Only for a second, but then it takes me a moment to get up the courage to write another. Not seriously, but the thought is there. And like anything we do, if there is a failure, it knocks back our confidence. And we’re evolutionarily hard wired to take negative things on board more than the positive. If our ancestors ate a berry that make them ill, they needed to remember never to eat that berry again. Even in 100 good things, it is the bad one that stands out to us, that we hold on to, that we dwell on.

I bet you that any surgeon with a bit of experience under their belt could still tell you about their ‘failures’ (though they may not like to). What they were wearing when they broke the bad news, the face of the patient or family, how they got home after. Maybe they bury it deep, trying not to remember it, chalking it down to ‘wasn’t my fault’ but I can guarantee you it is still there, imprinted in their mind forever.

The second part of that quote from Leriche is as follows:
“Every surgeon carries within himself a small cemetery, where from time to time he goes to pray.”

In fact one of my surgeons said recently that she will never forget the day they had to rush me back into hospital. I was so blissfully unaware, just so grateful that they all rushed in on a Saturday and got me back in and fixed it. I was smiling heading in, not at all phased. I had complete and utter faith in the fact that they would fix it. Complete and utter faith in them. And rightly so, but it could have gone either way. I guess they understood the gravity of the situation. Their work had failed (not due to them, just due to luck) and my life was on the line, they needed to get back in, try again and hopefully fix it.

We need them to stay confident after a set-back. To trust in themselves to make the cut, to do the surgery. In my case, they worked tirelessly for 10 hours in that second surgery, having done it for 16 hours just five days before. Could you imagine working at something so delicate and ultimately important for 16 hours? My concentration wanes each day at 3pm, after only 6 hours at work.

Sometimes I wonder if there were pictures taken of my surgery and if I would want to look at them if they were available to me. I’m not sure I could deal with seeing myself in that way. But part of me does have a fascination, and I would certainly like to see photos of my surgeons in action, look in at their faces as they worked to save my life, looking as an outsider but also an insider too, someone with a somewhat vested interest in the outcome.

I’m not going to stop pushing for answers. I’ve always been one to wait my turn and not rock the boat, but I’ve been told too many times over the past year to be my own advocate. So I ask the questions, I follow up on the responses when I haven’t heard anything. But I hope they know that when I am grumbling about something so seemingly inconsequential to them like not being able to breathe through my nose, I do so knowing that were it not for them I might not even be here to worry about such things. And that really does put some things in perspective. I think you can take it for granted a bit. All I did was go to sleep and then recover and now I’m dealing with these ongoing annoying things that I didn’t have before that I may have to face forever…that becomes a reality that fills your current well of suffering (remember the quote from Viktor Frankl?) and your mind minimises the enormity of what you’ve been through and how tiny these struggles are in comparison. Though that doesn’t mean I’m going to settle for anything just because I’m grateful to be alive, I will always be pushing for things to be better. That’s just who I am.

I would like to send my surgeons a Christmas card every year, though they do a good job at staying disconnected from their patients – I have no way to contact them directly. Probably to make sure they don’t get an influx of Christmas cards every year.

And what would I say if I did?

‘Hi, just me, still alive, cheers’
‘Hi, thanks again for allowing me to make it to another Christmas’
‘Hi, I’m not into Christmas, but thanks for playing God for me that one time… Appreciate it’

Probably a good thing I can’t send them Christmas cards, there aren’t enough words to put on a small square of paper to express what I would want to say to them.

I only hope they never forget that they made the biggest impact on my life that anyone ever will. And I’m so eternally grateful. Though seriously, this scar tissue in my, can you not just fix it guys?! 😉

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

On By Jen EveIn Thoughts3 Comments

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

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

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

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

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

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

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

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

That was it.

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

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

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

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

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

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

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

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

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

I will try to take my own advice.

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

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

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