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!):

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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:

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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!

Off we go again…

Hello everyone, I know I’ve been quiet for a bit, it’s been cold, I’ve been busy and my parents have been visiting for a few weeks. I’ve been ticking along as usual, a few things you would probably appreciate an update on.

I had my clinic appointment a couple of weeks ago to get my MRI results and the day before I got a call asking if some of my blood could be collected for research. Yes yes yes yes research! Always yes! So I went along early to get my blood taken. There was a new staff member who was being supervised by another, but she assured me she was very experienced. Not that it bothered me too much but I gave my usual disclaimer that my veins are difficult. They assured me there would be no issue. Cool. We’ll see.

She tried one arm and found the vein but my blood didn’t want to leave me. Aww my blood has separation anxiety. Cute. She asked if she could try again. Of course. Better luck this time. She got the needle in my hand and it started slowly filling the tube but then it stopped flowing and started hurting quite a bit.

‘The vein is going to blow!’ She announced with a wavering voice. I looked at the other nurse and she looked at me with what looked like a slightly worried face. I looked down to see my vein bulging.

Wait, did she say it’s going to… ‘Blow…?’

‘It’s bleeding under the skin… I need get it out…’

Ya… safe to say the blood rushed away from my head then. Or to it? Either way I felt very hot and faint. I’m sure that’s a perfectly normal thing to happen but it’s just not what you need to be told when you’re already in pain and stressed. So she stopped and I lay down.

Then of course I was annoyed because I had failed at helping with research. Lots of apologising from them, from me, good fun. I went and had a little cry in the bathroom, stressed by the situation and frustrated that I couldn’t help. I went back out to wait for my clinic appointment and a little while later the nurse came and apologised again (as did I) and she gave me a haematology pin to say thanks. That was sweet, I like pins.

I made a friend while waiting to see my Oncologist, he had also had a face sarcoma. Twice. We were laughing about all the random body parts we have in our face. It’s a strange club to be in. You know you’re with people who get it when you can call someone ‘greedy’ for having cancer twice and have a laugh about it.

Everything went smoothly with Mr Onc. ‘Nothing in your lungs’
‘Oh that’s good! But I thought you said…’
‘It looked like something but it wasn’t. Or at least if it is, I don’t know what it is yet so I’ll see you in 3 months and we’ll look again’
Ha. Good. Bye.  ‘I like not seeing you very often’ I said as I shook his hand and scurried out.

He also said to me ‘this summer will be two years since diagnosis, won’t it!!’ I didn’t believe him and said ‘No surgery was only a year ago’. He looked at me weirdly and was like ‘yes…… And you had treatment before that……’  LOL yes he’s right.

Well apart from that, I’ve got the first of my teeth surgeries on April 12th. We’ll find out then what will be possible (I think? It sounds likely…) and then hopefully if I’m lucky and everything goes quickly and according to plan, by the end of the year I might be ready to look at some sort of teeth thing! Though that’s probably being a bit hopeful, these things usually take a lot longer, mainly because it takes so long to hand write, print and send letters in order for any process to get moving.

Yes this is good news, and I’m so glad to have some progress! But I’d rather avoid comments of ‘that’s amazing, soon you’ll look all better’ and the like. Or ‘wow teeth in April!’ Because it will still be a while until I actually get them, whatever they may be. I don’t know how I will look, I don’t know how much they can do (if anything), and although I am optimistic for the best, I need to manage expectations, both yours and mine. So we’ll see. Progress is good. Let’s see what happens next in this crazy adventure shall we?

Hilariously, I went along to my ‘pre-assessment clinic’, which I thought would be when I’d find out what they’re going to do in this surgery I’ve got coming up next week. But the nurse and anaesthetist who were running the meeting were asking me questions like: ‘Who is doing your surgery? Are you staying in overnight? What are they planning on doing?’
The anaesthetist even asked how long my surgery was meant to go for! Ummmmm………. You’re asking ME? Well that’s reassuring.

No one has told me anything about this surgery, I was kind of hoping that they were going to at this meeting. I hope by the time I get there on Friday they’ve worked out the answers to those questions because if not, well… I might end up with an amputated leg, or less one kidney or something. I guess I don’t really need two kidneys if it comes to that.

What I have pieced together from talking to random (non medical) people around the place is that they’re just going to drill in a bit and cover it back over for 6 months. But I guess I’ll let you know in a couple of weeks if that’s the case. I have no idea how disruptive it will be, how long I’ll be in hospital (I think just the one day?), or what the recovery will be like. I hear it will be swollen and sore but obviously nothing like what I’ve already been through so I’m not too bothered.

I’ll keep you all posted! Until we next speak, have a great week!

Teeth talk time

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!