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!