So where am I at right now?

When I was about 7, I went to a gymnastics day at my local sports hall. For some reason I put sunscreen on… perhaps it was the day before that I put it on? Perhaps I’m mixing my memories, but this feels right. That day I found out I was allergic to sunscreen. Banana Boat, specifically. I suppose I had worn sunscreen before that, but that day we used Banana Boat and my skin screamed. I came out in big, scary, angry red welts. My skin felt tight, itchy, unmovable. I’ve always remembered the itchiness, but up until now I hadn’t remembered the tight feeling across my face and the inability to make facial expressions. As I tried to smile, the creases my face made felt like I had layers of thick mud on top of my skin. But no, that was just the swelling and reaction to the sunscreen.

Post implant surgery I have been like that again – not red, not itchy. But the tightness and the swelling has brought back memories to that day.

A particularly odd sensation – my ears have felt like they’re being lifted forward off my head. I’m not sure why, perhaps because of the tightening of skin in my face. I remember this from the last surgery too, but there was a lot of other stuff going on that it wasn’t my top worry.

Well the obvious thing to say is that what I’ve been going through this time is nothing compared to what I was going through coming out of surgery over a year ago. It doesn’t even register on the scale compared with that.

But with me being me and thinking everything will be ‘all good’… it’s also a lot more serious than I thought it would be. I’ve needed more recovery time than I was anticipating.

Weirdly, the pain in my face has been greater than it was from THE surgery. I guess it’s less numb now and I’m on less pain killers…

They cut all the gums in my mouth in order to access all the points they needed, so there are stitches and raw wounds in there.
My lips have been cracked and sore from a couple of hours of having tools shoved past them.
My face is bruised from having instruments on it and people working on top of it.
My neck has been sore from the angle they had me at during the surgery.
My jaw has been really painful.
My cheekbones ache from the inside and hurt from the outside. They feel bruised to touch.
When I wiggle my right cheekbone it wiggles my lip… that’s kind of fun.
I am exhausted most of the time.
I’ve had to sleep upright again, which has been mentally taxing. Trying to get comfortable by stacking pillows on top of each other has thrown me back to what it was like a year ago. Things always seem more difficult at night.

Sometimes I wonder how my body is able to take all this beating and still come out the other side, essentially functioning… But here we are, still going.

So. I went in to see the dental implant guys at Dawood and Tanner and they have given me some teeth… kinda. They’re just temporary teeth. Placeholders. They don’t really fit right (they just kind of stick out in the middle of my mouth), I can’t eat with them (super difficult since I can’t take them out…), but they’ll stay in for the next 3 months until I get my proper ones. I did a few videos on my instagram so you can see them – click on the circle on the top left that says ‘implants’ at the following link:
https://www.instagram.com/thecancerchrons/

They’re uncomfortable, painful, don’t look right and make it quite difficult to talk and obviously eat, but they look like teeth, and it’s nice to know that people won’t look at me strangely anymore. Well not quite so strangely, anyway. Still a way to go before we get them right, but I’m one step closer.

Surgery part 2

I think we tend to build up our medical professionals as wizards, magicians, Gods. And in a way, they are. The work that they are doing is beyond belief, and I have gone into my surgeries with complete trust in these people, putting my life in their hands.

Lay-people have said to me all along ‘oh, you’ll be fixed as good as new by the end’ and ‘you may have concerns, but don’t worry, it’s amazing what they can do these days, they can fix anything’. Of course there is a lot of truth in that. And I know when people say these things, it’s to be reassuring. But I also want to point out that continuing to propagate these messages is somewhat dismissing the mammoth task these people are doing, as well as dismissing me for being realistic about it.

From the beginning, the surgeons and my implant specialists prepared me for that fact that although we were hoping for everything to go wonderfully smoothly, it really is a big and difficult job, and there are no guarantees. I just want to stress this fact. There were so many things that could not go according to plan. Apart from the usual surgery things, there’s also the fact that they’re trying to fix implants into a ‘jaw’ that is actually a shoulder bone… Like…what?! How is that even possible?

And this is why it was a combined job between Andrew Dawood and his specialist dental team, and the original surgeons who did my reconstruction. I saw Deepti before, and the surgeons after, but I wasn’t able to see the Dawood team at all during my hospital stay, which felt so odd because I knew they were there, behind the scenes… I was comforted knowing I had met them previously however, I can’t stress how much of a difference it makes to already know the people who are doing things to you while you’re asleep. Ok that sounded creepy…

Going into this surgery, they were planning on 5 implants. 3 zygomatic ones (those big ones that go into my cheekbones) and two ‘normal’ ones which just go directly into the roof of the mouth. When I woke up, my tongue found three. I wondered if this meant that it didn’t go as successfully as they had hoped, but Deepti mentioned the next day that they didn’t think they needed the other two, so I think that’s fine. She also said in passing ‘it was a bit of a difficult surgery, the left side was fine but the right side was a bit tricky, as you would expect considering how much we’ve done in there’.

Of course you don’t want your surgeons going on and on about how difficult it was and how much they struggled, but I wonder how much ‘it turned out ok’ in hindsight relates to some real struggles in surgery. So I really just want to take a moment to mention all the people who were in there, the huge team of people and support staff who were poking away at me, toiling through the hours of the evening to take me that next step.

So to follow up on ‘when I woke up, my tongue found three’, let me explain. The only difference I could tell post surgery (aside from swelling) is that there are there little caps sticking out of the roof of my mouth. As I write this now a few days later, I can hardly feel them anymore. The little caps are on the end of these three big metal posts that go through the roof of my mouth and into my cheekbones. Eventually these little ‘healing caps’ will be taken off and the teeth attached to them. These are what will anchor the new teeth in.

One other difference was that they released the damn scar tissue that was pulling my lip in. When I saw Deepti the next day she said I would be happy to know that they did that. I smiled and nodded. Well I tried to smile, but with all the swelling, I think I just looked at her. But I’m sure she knew I was smiling.

So it was around half 10 (pm) when I got back to the ward after surgery, I spent the trip to my bay chatting with Anna, the nurse from my ICU stay over a year ago. I think I was overcompensating for my dopey wakeup and was talking about 100 miles an hour. She said she’d been keeping up with the blog, nothing made me happier than hearing that.

I slept in bits and pieces overnight, as it goes when sleeping on a ward. It’s all a bit confusing, I’m not sure how much of that is related to the anaesthetic, and how much is just the odd environment and the people around you talking, turning lights on and off, alarms going off, etc. either way it’s all a bit disorientating. But I felt surprisingly calm. And I was grateful not to have a feeding tube (it was a potential risk), and holding onto those words I hoped I hadn’t dreamed: ‘it went well’.

The next morning was ward rounds and a whole army of people came by. Seriously, there were  about 20 of them. Through the sea of faces, Deepti came to the front, loitering at the back were Mr K and Mr Lieu (my original surgeons – I tried to smile at them, but I think my smiling capabilities were rather compromised, so again I think I just stared), and then Claire (surgeon from the first time around) rotated to the front at one point and said hi, more attempts at smiles from me.

They said I would be leaving that day and that Deepti would be around later to ‘fill up the holes with glue’. Ah now that’s terminology I can understand! Wait, you’re gluing my mouth up??? In the process of chopping through scar tissue and securing implants etc. some of the ‘flap’ (roof of my mouth) collected a few holes in it. Two that I could feel with my tongue but didn’t hurt, and one at the back that was quite raw and painful. Later that afternoon she came back and filled them all in.

It was quite a big day. A few other people I knew swung by and said hi, and I met with someone who was doing a Masters and working in patient involvement. She was awesome and we had a good chat, glad to be connected with her. Australian of course – we seem to find each other.

There was also an emergency on the ward during the morning, alarms going off, people running around, with phrases being shouted out such as ‘we got him back into surgery’ and ‘he just started bleeding and we couldn’t stop it’ ‘we had to give him 6 packets of blood’. Don’t worry, it wasn’t my friend, he was recovering down in ICU at this point. But it was a little throw back to me getting rushed back into emergency surgery over a year before, from the exact same ward. I hope he was ok, as I was then. But of course, ok because the surgeons rushed back into surgery to save him. What a job. Nurses had to go and change their uniforms as they had blood on them. This hospital business is serious.

So eventually Deepti made her way back to me, having dealt with the emergency and she filled my holes and we had a chat. She said she’d see me again in clinic in a week or so.

I also saw a nutritionist. The hospital is not set up for people who need a liquid diet. Yes they have soup (when they haven’t run out) but they had on my file that I could only have yoghurt. But it wasn’t easy to find yoghurt, and the nutritionist said she thought I probably wasn’t allowed yoghurt because it wasn’t liquid enough. I had been fasting since Monday night for surgery, and it was now Wednesday morning. Someone gave me a yoghurt after surgery so I had that, but then I wasn’t sure what I could or couldn’t eat. It was like going back to a year ago when there was literally nothing in hospital that I could eat. At least this time I was physically able to put yoghurt in my mouth, but the year before I was not able to because of the swelling, which meant no food while in hospital for Jen. When the nutritionist turned up she gave me some terrible supplement drinks to take home and we discussed what I would eat once I was discharged. I’ve got this, I promise. Ain’t my first rodeo.

The ward ordered my discharge meds, but said it would take some time. It always takes some time. So I popped down to ICU in the meantime  to check up on my friend. He was waiting to come up to the ward. On the way I ran into a nurse who works at UCLH who I know from Instagram (and obviously have mutual contacts) but have never actually met. That was pretty great. Glad she recognised me, I was in a bit of a daze the whole time I was in there.

My friend was doing ok. He had a big surgery, I knew how he must have been feeling. Exhausted, to say the least. But it was nice to say hi to him and his parents. Sending so much love to them all. I can’t begin to explain how happy I had felt that we were both going back in on the same day, both getting some sort of progress, and how great it had been to see him. We’re in this together.

My nurse (again, another familiar face from the year before) said that it would take forever to get the meds to the ward but it wouldn’t take so long if I went to pick them up at the discharge lounge. So I packed up my things, said bye to my ward buddies and set off to the discharge lounge.

When I got there, they made me a cup of tea (dream) and said that my meds would be there within an hour. Great. I don’t want to dwell on it too long but it took about 3 hours until they finally got my meds. It was 6pm by this stage, my painkillers had long since worn off and I was exhausted from talking, smiling (/staring) and being switched on. I was in pain, I was tired, I needed to get home. It had been less than 24 hours since surgery and I just needed to get out of there. I hit a wall. I started crying at one point when they came back after a couple of hours and said there was still no sign of my meds. One of the people kept trying to talk to me but I had to tell her it was too painful to keep talking. I blew my nose and there was blood (there had been all day, it was an expected side effect, they drilled through my sinus cavities, though without puncturing the mucous lining). Eventually they tracked down my meds, I got in the Uber (there was an Uber strike that afternoon of course, but a couple were still working) and I eventually got home, collapsed and slept.

Tired lil puff face Jen just after getting home (with a slight black eye starting to appear):

Surgery part 1

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

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

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

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

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

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

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

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

So let me do some explaining.

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

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

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

img_8414.jpg

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

img_8425

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

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

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

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

Friday surgery retraction statement

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

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

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

Jokes.

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

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

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

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

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

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?! 😉

What the experts say…

Every time I see my Oncologist or Surgery team they send a letter to my local GP, the onc at my local hospital, and good ol Sproaty who gave me my diagnosis. And a copy goes to me too. My name gets a tick next to it on the letter that comes to me. I like the thought that everyone gets their own tick next to their name in their copy of my cancer story.

These letters are kind of a way that us patients find out the more specific details of our condition. Maybe add a bit more to the things we’re told, sometimes fill in the gaps.

Each one describes what was discussed at that specific appointment but there is a big bold bit at the top that stays the same each time, though bits have been added as time has gone one. So this is it. This is me…

Diagnosis: August 2017: localised high-grade chondroblastic osteosarcoma of left maxilla. To commence neo adjuvant chemotherapy (cisplatin, doxorubicin, methotrexate).

Treatment: 8/2017 – 2/2018: MAP chemotherapy, complicated with AKI which was reversed, methotrexate was stopped after cycle 4.

Surgery: 5.3.2018: Mid-facial degloving access – right maxillectomy, unblock with nasal bone up to the inferior of the medial canthal area and to the level of the zygomatic buttress, including pterygoid plate. Reconstruction with a chimeric latissimus dorsi and tip of scapula bone flap.

Histology: High grade chondroblastic osteosarcoma — several close margins of a few millimetres – tumour presence on the right zygomatic buttress. Therapy-related tumour necrosis is <50%.

Not sure why they keep insisting it’s left maxilla at the start, it wasn’t. Anyway, sounds like they cut out the correct bit…

It’s always fun reading the letters they write. I feel connected with everyone and informed. And hey, who doesn’t like reading about themselves?

Yes, I had to do a lot of googling of mentioned terms. Had no idea what most of them meant…

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.