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

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?! 😉

Happy 70th birthday NHS

It is the 70th birthday of the NHS.

Where to start? I suppose with something that’s obviously close to me.

Looking at cancer alone – 50% of people get cancer. That means you, and your mum. Or your partner and your dad. Or your sister and your best friend. I know of people in the US who couldn’t afford treatment, or who have gone into hundreds of thousands of dollars of debt. I wouldn’t be able to afford that, would you? Even in Australia, when my father got an MRI checking his prostate cancer, he had to pay $600/go and that’s on top of private health care.

Even just looking at MRIs… I have to have one every 2 months. No way could I afford like £400 2 months, and that’s just for maintenance scans! Who even knows how much everything else would (have) cost.

Thanks to the NHS, I’m not forced to go into ridiculous amounts of debt just to have a chance of staying alive. The beauty of us all paying that bit of tax to the NHS means that anyone can get the treatment they need regardless of whether they manage to have a job that gives them lots of money. Their fate will not be sealed by their pay check. And it’s there for when the rest of you need it.

And I haven’t had to settle for a sub-par surgeon or someone who isn’t a specialist in my area, I’ve been able to get the surgeon I need, in fact one of the best.

When I was diagnosed, some people asked me if I would move back to Australia for treatment. This confused me a lot. Why would I decide to leave my life and the country I want to live in just because I have cancer? There’s no need to necessarily give up on life just because you have cancer (not for me anyway, I know everyone’s cancer is different)! What a depressing thought that I would suddenly quit everything of the life I have built and want to live.

But that aside, why would I want to go back to a country where you’re not looked after? Where you have to fend for yourself and if you’re not rich you must go into a lot of debt to have a chance of life? I say this with not a lot of knowledge how it would be to have my cancer in Australia, maybe you can get some funding to help and maybe Medicare can help with some. But going off my dad’s experience, it is no NHS.

And the people who work for the NHS… they are the most heroic people. The doctors and surgeons are making miracles happen, the physios, anaesthetists, radiographers, therapists (ok, I’m not going to go on naming all the types of professions in the NHS, if you’re one, you are the best) are irreplaceable, the nurses are absolute angels, even the people cleaning my room when I was in hospital brought me so much joy.

Sure I’ve had moments where things haven’t been great. I’ve had blood work lost, I’ve waited in a room in A&E until 3am waiting for a bed in a ward whilst in the absolute worst of my neutropenia and illness during chemo (but they did manage to find me a private room eventually), I’ve had dentists ignore my cancer (though to be fair they were NHS but made me go on private to get an appointment quickly), I’ve had doctors forget to come around and discharge me from hospital, I’ve had doctors in hospital causing me unnecessary pain and discomfort when they thought they were doing the right thing but didn’t take a moment to think… but it takes time to go through my memory to find bad moments, and they are only a small handful of thousands of fantastic ones.

I feel like people who complain about the NHS are those who haven’t needed it yet. Or even if not, I know there can be bad experiences in anything. But the amount of people I know who the NHS has saved…

The NHS makes me proud to be British. Growing up in Australia, I never felt Australian, I knew I was British. And from the first time I stepped off that plane in London 3 years ago, I knew I was home. I don’t feel like I could ever leave. There are many things that make me proud to be British, and a few things that don’t, but above everything is the NHS. This is something so important, special, necessary to our lives here. It underpins everything, looks after us, and it’s something we’ve helped create. What a fantastic thing. I know it struggles, I know more needs to he done to help it out, I have no suggestions of how to help it, I wish someone did. But I do know we need to protect it, to keep it alive.

Happy birthday NHS. I think everyone who has ever worked for the NHS in any capacity can really take this as their own personal celebration too. From the people who used to drive blood donations around from the donor to the receiver whenever needed before refrigeration existed, to the clinical trials which ended up saving lives, to the doctors working long shifts to make sure everyone gets seen and we all live.

We thank you all. So many of us are here because of what you’ve done over the years.

Happy birthday. Have a champagne, NHS, you deserve it. But don’t let your hair down too much, because we need you, every second of every day.

Meet my Surgeons (otherwise known as best friends)

I think it is time to introduce you all to my surgeons. These guys honestly became my life line, they felt like my best friends – visiting me each day, telling me things were going well… I knew they were looking out for me. They didn’t all visit me every time, sometimes a lot of them would come, sometimes just one. Sometimes they would have a few other people with them who I didn’t know, I could only guess they were either training or maybe the ward doctors. Sarcomas are usually dealt with in teams, I’m told. Well, here are the main players in mine.

Mr K(alavrezos) – The head of my surgical team. Smiley, clever, somewhat foreboding (I suppose you could say realistic, but he does tend to focus on extreme scenarios), to the point. I like him. He has a certain way about him and I think sometimes we annoy each other, but really he’s amazing. And I really appreciate how direct he is about things. That’s what I want from my surgeon. I also very much respect that he cares about how the surgery will affect the patient aesthetically. He places cuts in areas where the patient would usually have lines in order to disguise them as well as possible. He really does care about his patients. People speak so highly of him and his team, and for good reason. I didn’t see a lot of him when I was in hospital as he went on holiday after my surgery, I think he visited me twice, once before he went away and once when he got back. I do know, however, that he was still in contact with the team about me while he was on holiday.
He was still away when I was rushed back into surgery, so for the second round, the onus was put on…

Mr Liew – He was also a part of my first surgery I believe. There were a lot of surgeons involved so I honestly don’t know how it all worked logistically, makes sense to have a different surgeon for the shoulder/leg and the face I guess… I really wish I knew more about the details. Either way, Mr K. and Mr Liew are the two consultant Maxillofacial Head and Neck surgeons. Mr Liew is such a genuinely lovely guy. Fairly quietly spoken, he’s happy to stand at the back and let other people do their thing, but he says all the right things when he needs to. I enjoyed his visits, he came by quite often. I remember one night another member of the team came in on his own and called Mr Liew about something (they were worried about me that day), and he asked if we wouldn’t mind waiting a few moments – he was in clinic or something and dropped what he was doing to come and look at me. I appreciated that.

Deepti – My absolute hero. Whenever I saw her, whenever I heard her voice, I felt happy. She gave me energy, when I woke up each morning I was motivated by the thought of seeing her and wanted to look my best for her. When I had those days at my absolute worst when I wasn’t really able to look after myself and I was covered in blood in the morning when she came in, she rallied the nurses to clean me up; once she saw me clean, she said she wanted to see me like that every day. By this point I was more capable of sorting myself out and had my own room. I got together my 2 hour morning routine, and got into the habit of asking for a clean gown the night before so I was ready (once I got the last of my drains out I switched to wearing my own clothes – another suggestion from Deepti). These little suggestions from her really helped me to feel a bit more human. I have so much respect for her. She is the most perfect mix of professionalism and compassion. She was the one who called my parents after the surgery, she visited me the most, she was usually the one who decided when drains or stitches would come out, she told the nurses what needed to happen, she usually did the Doppler checks, she was even the one (fast forwarding a bit, we’ll get to it soon) who told me I could go home and took out my feeding tube. She was the one I looked to for reassurance that things were ok. I remember seeing her just before I went into surgery the first time and she squeezed my leg in a reassuring way that made me relax. I honestly can’t even express how much I appreciated her all the way through – from before the surgery when she made time to talk me through everything, to every visit when I was in hospital when she gave me reason to smile no matter how bad I was feeling (maybe with the exception of one day – the morning after the first night in the ward, second time around), to seeing her when I went back to clinic after I had left hospital.

Claire – I met Claire just before my surgery, she ‘consented’ me, meaning she talked me through all the aspects of the surgery (and possibilities) and I gave them consent to do what they needed to. She was so lovely, so personable, after my previous appointment had been a bit of a full-on one with Mr K, it was so nice to have Claire talk me through everything in a more… human way, rather than complex surgical details. Seeing her visit when I was in hospital made me smile (I’ll be sounding like a broken record here because seeing any of these guys made me smile), and I remember seeing her right before the first surgery too, and she gave me a big smile and I really felt I was amongst friends who would protect me, who were there for me to make sure I got through ok.

Payam – I didn’t meet him until after surgery but he very quickly became one of my best friends too. His smile, sense of humour and positive attitude made him a lot of fun to be around. He was very nice, we had some good chats. When I saw him in clinic when I went in for a check-up, 4 days after I left hospital, he came and got me from then waiting room and I said ‘I’ve missed you!’, and it was true!

These guys made me feel like the most important person in the world, they were my team, I was their priority, they were there to make sure I was ok. If they can make every person feel like that, that is amazing. No matter how bad I was feeling, seeing any one of these people brightened me up. They prescribed things to make me better as required, they gave me the good news each day that my flap was doing well (except for the day it was worse of course and I had to go back into surgery, but then I knew they were there, which reassured me), they were the people who knew what was going on.

I trusted them. With my life. And they treated it well.