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):

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!

The joy of ongoing appointments

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.

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…

MRI and all that

I suppose I should let you all know that I got a call saying there is nothing ominous in my MRI! Yay! To be honest, I had forgot about it, people kept asking me if I had heard and it took me a while to think what I was waiting to hear about. ‘you must be so anxious and stressed waiting’ they would say. ‘for…what…?’ I would ask. Lol clueless.

Next steps? Don’t know. Well, I do know. Teeth!! Actively? No idea. Hoping that referral comes soon, don’t know how long takes to actually get in to see the guy. But hopefully soon I’ll be seeing the man with the teeth about becoming the Jen with the teeth.

In other news. I’m now on the biggest extend setting of my jaw stretching machine. The Speech and Language Therapist said that should last me a while, but it didn’t – just over a week. She also said I could then put it on a bigger stretch setting but it turns out it was already on the biggest setting. So… Um… Over achiever?

Also this morning I rolled my ankle and got a sharp pain in my forehead… Not sure what that’s about. (Don’t worry, it’s not actually related to anything, just an amusing anecdote. Now if I hurt my shoulder and my top jaw hurt, that would be amusing).

Anyway it’s Friday again! They just keep coming, don’t they? Hope your weekends look bright! If they don’t, have a look to see what you can do about it. Even in your dark days there are things to be found.

Another MRI survived and the impending referral for…

So I was filling out my MRI form last Friday and one of the questions was: ‘Have you had any operations on any part of your body in the last 3 months?’

I went to say yes… Of course I have… remember that big thing that happened in March? But… wait… No! No i haven’t!

In fact, It’s been 6 months! My goodness. Yesterday was the 5th of September, and on the 5th of March I was in that first long surgery.

So that’s… fun…

Anyway, MRI. I survived! When the imaging assistant (?) came to get me she looked at me for a bit and then said: ‘I’ve met you before! You’re the lady with the blog!’

I couldn’t have smiled more. I like being the lady with the blog!

It took three attempts to find my blood. Standard. I sat there crying a little bit, clenching my fist and my few teeth, the pain of needles in my veins never gets less. I’m fine with it going through my skin, but once it gets into the vein… OW!

But we got there, and then it was just a matter of surviving the next half hour of stabbing pain in my arm from the cannula… oh, and the MRI.

I had taken 1x Lorazepam about 40mins before I was scheduled to start, but then we ended up running an hour late so I stressed and took the last half one I had. Anxiety over taking my anxiety tablets… Great, I’m a mess.

I got on the tray thing and lay down, Clarence in hand obviously, asked for music (The Beatles!), put my headphones on and lay in wait. I had specifically asked if they could wait until the music started until they started putting me in. They agreed, but then started moving me in before the music had started.

PAAAAANNNNNIIIIICCCCCCCC!!!!!!!!!!!!!!! HYPERVENTILATING!!!!!!!!!!! TEARS!!!!!!!!!!!!!!!!!!!!

He stopped immediately and put his hand on my leg so I knew he was there. I needed to be in control and I suddenly wasn’t. But within 20 seconds I heard ‘Here Comes The Sun’ through the headphones and I knew it would be ok. Because the sun always comes out when that song plays. And it reminds me of so many special people in my life.

And in I went. He kept his hand on my leg until I was in. This is unbelievably helpful. If there are any radiographer/imager/MRI people out there (honestly if there is, please get in touch and tell me what your job title actually is because I never know what word to use!) and you have someone who is anxious before an MRI, putting your hand on them as they go in lets them know that they’re not actually as isolated as they feel. Honestly, you feel like you’re trapped so far in there and a hand telling you that the outside world is not actually that far away makes so much difference.

Anyway, the rest of the scan was uneventful. The music wasn’t loud enough but I could just hear it mostly. Then it stopped for a fair bit of time… but I was ok. Cool, calm, collected.

Afterwards I took myself out to see the Cabaret. That was fun. Then met my housemates at the local to debrief. I made friends with an actor and wrote a limerick about him, posted it on Twitter and tagged him in it… Although he followed me back on Twitter, he didn’t ‘like’ my limerick and I think he probably thought I was a bit crazy. But I’m going through a phase of writing limericks about new people I meet (as you do) and I’m not ashamed of it. Oh, if you want to read it here it is:

I once met a man who’s an actor
I asked if he had won a BAFTA
We wrote a musical
At the Bar, he was my pal,
And I asked if we could hang out after!

Anyway… Tomorrow I have my Clinic Appointment where I was told that pending a clear MRI, I will be getting REFERRED FOR TEETH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So……… I’ll let you know!

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.