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…

On the Fringe…

I went to the Edinburgh Fringe festival a couple of weekends ago with my dear friend Shiri.

It was brilliant. We caught up with Katie’s (my bestie who was visiting recently) friend Sam who I met while Katie was here and I loved her so we’re friends now. She’s an actress and we caught her improv show, which was fun. Like an actual actress! How cool is that!

We also met a guy From Seattle named Sam. It was a weekend of Sams. I wrote a limerick about him because that’s what I do now when I meet people –

I once met a man from Seattle,
I was happy that he did not prattle.
We met at Ed Fest,
I asked what he liked best:
A puppet show that was a battle

So we mostly went to great shows but we also went to one that wasn’t good, at the insistence of Seattle Sam. It was a puppet show about puppets dying. Yes, as you might have guessed from the limerick, it was a battle to watch. People laughed, we didn’t really get the jokes, they were crude and meaningless.

But one of the puppets was there through whole thing: the narrator, an old man who talked about the ever-moving, ever-changing phases of life. Seasons come and seasons go, time is transient.

He told of a man who feels every death in the world as if it’s a personal loss. If a man dies on the other side of the world, he is sad because he imagines it is his own father. If a woman dies, he imagines it is his daughter. The narrator explains:

What is the source of this poor man’s grief? It is the unbearable truth of the world. And because it is unbearable, we have closed our hearts to it, so long ago that we have forgotten how to open them.

Have we closed our hearts off to some of the world’s unbearable grief? It’s possible, I think we may tend to minimise a lot of things, a lot of things are more normalised now we can see it all on tv. But you can’t take everything on as personal or you’ll never get out of bed.

While most scenes in this show were insufferable, this old man popped up every now and then to discuss humanity and the world. And as it reached the end, he got more tired, and in one of his speeches, he loses momentum, he whispers his last words as he sinks to his knees, his final thoughts barely heard by those listening. He falls, his final resting place on a black box, in the middle of the stage, everyone silent.

Moments after, a big menacing creature ambles out. While rather scary, it has a look of quiet resignation on its face, almost as if it is a protector. Human sized, it reaches down and it picks up the small fallen wooden old man and then it pauses for a moment, turns around and looks straight at me. Not just out into the audience, not just to my side of the room, it looks at me. And for a few brief seconds, death and I look each other right in the eyes.

And I knew it meant me no harm. And if my time were to come, it would be there to take me in its arms and carry me away.

Yes yes, I’m not religious, I don’t believe in spirits or death being a big menacing monster who holds you in your final moments. But there was something rather reassuring about this moment. We are not far from the big monster many times during our lives, sometimes more than others. It was Epicurus who said:

Death does not concern us, because as long as we exist, death is not here…

Having said that, I think I’ll try to keep the hell away from old mate death for as long as possible thanks, because I’m busy, I’ve got lots of things to get done before we meet again. And there’s nothing actually reassuring about dying, death is death, not of us want to die, and it’s not nice on all counts. But it was nice that it took the time to wander past to say hello, and kept on moving on its way, leaving me with a reminder of how lucky I am to be alive.

Sound like an analogy for something?

Anyway, the other bit of life wisdom from the festival was from a play about the fall of the Berlin Wall. Now this one we actually did enjoy. The poignant line from it was:

Home is not a place, it is a thing that you make. That is Freedom.

Aah. There you go. It is true though. Where I grew up will always be home, but so is London. And other places have been too. Home is made by the people you surround yourself with, and the life you make for yourself, and the freedom that gives you. So thank you to all the people who have contributed to my feeling of home throughout the various places I have decided to settle throughout my life.

Anyway, I highly recommend the Edinburgh Fringe Festival, I had a fantastic time. I will be back every year.

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.

So I finally met with my surgeon…

It was a busy day actually. I had to go in first for a chest x-ray. This is one of those things I have to have every two months. You see, the most common mets for osteosarcoma (look at me with my cancer vernacular. Mets = metastasis = spread) is to the lungs. So we keep monitoring. Monitoring is good. That was all quick and easy.

Made a new friend in The Living Room in the Macmillan centre, standard. Hi friend! Originally from NZ, we had some chats about that side of the world, as well as people, society, cancer and the cancer gene (Which fascinates me). It would be nice to catch up with her again one day.

When you’re in the head and neck clinic, you see all sorts of people who have clearly had head and neck surgery (or are waiting to). Head and neck people, I’m not judging you, I’m not pitying you, but wow. When I see what some of you have clearly gone through/are going through, gee do I feel lucky. I mean I don’t compare these sorts of things, not really. Everyone has their different struggles and everyone can find things about their own case that they are grateful for (I’ve written about this before). But I just want to give them a hug. I mean that would be terribly patronising if I did, but I give them a smile. And I hope they can see in my eyes that I mean it, and in some ways I get it. And please to all you who are struggling out there too, in whatever way, I want to give you a hug. Next time you see me/if we ever meet, let’s hug. It won’t cure any illnesses, but it’ll be a reminder that we’re never alone. And I care deeply about every one of you. I have a lot of love to go around.

Anyway, Deepti wasn’t in which was super sad because I was excited to see her! But I’m pretty sure she said she would be on holiday around now, so bloody good for her. She has earned that, she deserves that. Hope you’re enjoying yourself, girl!

So. Down to it.

Mr K: So you’ve spoken to the dentist?
Me: no…
Mr K: you haven’t?
Me: well… No…
Mr K: No dentists at all?
Me: ….

I mean I don’t know why he didn’t believe it, he has to refer me to see the dentist… And when I saw him a month ago he said today would be the day…

Anyway, I should be referred in the next couple of weeks. MRI results not in yet but once they are then I should hear about my referral. Apparently it’s not for their normal dentist guy because what I need is too difficult, though I didn’t really understand why. When I asked he said ‘because you can see the bone there and the soft tissue’. Ok… Were you not expecting bone? I mean you put it in there… I think… I was napping at the time so can’t verify but it is the commonly held belief.

I wish I’d had Deepti there to explain things to me properly. Mr K said ‘you know how we were waiting for it to shrink? Well now it’s shrunk too much. We need to get teeth in asap’. Do teeth stop it shrinking further? In which case… It’s going to shrink a lot more before I get teeth because they’re going to take a while… When I asked what he meant about it shrinking too much and that I had been concerned about that he said ‘teeth will help a little bit’. And that was the end of discussion.

It was all a bit confusing (standard). So he was surprised I hadn’t seen the dentist yet, but he can’t refer me to the dentist until he’s got MRI confirmation next week. And it’s been left too long and it’s shrunk too much. But when I saw him a month ago it was too soon and he said he would refer me now. And he glossed over the ‘shrunk too much thing’. And when I said I had been worried about that and worried that I would always look odd because of it and he said ‘teeth will help a bit’.

I mean I guess I knew that teeth wouldn’t really fix it. My face has sunken a lot, my nose has pretty much collapsed in on the right hand side of my face because it’s so sunken. So is that my life now? Deepti said previously never to say that, though is this the one time I should?

I love how seeing your surgeon leaves you with more questions than you had before.

But the main point I suppose is that once they get the MRI results, they are moving on my referral, so… That’s what I wanted I guess… I guess looking ‘a bit better’ is all I could really hope for but it was hard to hear. I guess we’ll wait and find out.

Oh I should probably also say… I had Oncology clinic today too, and the chest x-ray was clear. As expected. So that’s something. I’ll let you all know once I get more news. Bit of an anticlimax, I know.

I had a little cry about it all, but I’m ok. I am. Things are going well, really. But that doesn’t mean it’s not hard to hear some things.

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!

Let’s talk jaw stretching!

And let’s also add ‘jaw stretching’ to the list of things you don’t think of having to deal with…

So last time I went to surgery clinic, Deepti asked how my jaw opening was going. It was ok. The last I time I had it measured it was ’30’. I’m presuming that’s mm. Apparently 35 is the bottom of the ‘normal’ scale.

Deepti pointed out that once I get teeth, there will be a lot less room in there so it’s probably best to try stretching it. A couple of weeks later I got a package in the mail and a referral to the speech and language people to learn how to use it. My appointment with them happened on Wednesday.

So I’m meant to do it by the old 7-7-7 rule. 7 second holds, 7 repetitions, 7 times a day. Let’s be real. This thing isn’t small and I’m not carrying it around everywhere with me. She was like ‘every couple of hours – you can just go and do it in the bathroom at work’. Can I? Lol.

I’m aiming for 4 times a day. I mentioned this to someone I know and they said ‘oh are you buildings up to it?’ Uh… No… I’m just not carrying a big apparatus around with me everywhere I go so I can pop off to the bathroom in the pub on a Friday night to stretch my jaw.

I feel like that’s important when it comes to recovery. Sure, aim for some excessive amount but also just do what you can without burning yourself out. I mean I should probably be putting cream on my scars 3x a day, carrying my resistance bands around with me to do exercises during the day, taking my iron tablets every day, rolling ice on my face every morning and night for inflammation and never eating red meat, and so on and so forth…

And then I’d be constantly stressed, anxious and well… Still living ‘ill’. So. Yes I try to do all these things and many others as often as possible but I’m not stretching my jaw every 2 hours. Sorrynotsorry.

As for the jaw stretcher (/torture device?) itself… Does it hurt? No not really. It aches a bit after each use, which lasts for a little while, but it’s ok. Sure if I overstretch it then it’ll hurt but I just do it so it’s not too much.

The Speech and Language Therapist measured my mouth opening amount before and after doing my first 7-7 set and it went from 33-37(mm?) so that’s fun!

Another cool thing and a shout-out to my twitter community… My friend Liz messaged me saying:
How’s the mouth stretcher? I read a lot about them when researching radiation damage and you’ve got the nicest type.

There’s something quite reassuring about having these people, there is always someone who knows, or at least gets it! I’ll write a bit more about them later.

Last thing, it’s MRI FRIDAY. Which, if you’ve been reading my previous posts, you’ll know terrifies me these days – not because of #scanxiety (I don’t get that) but because of #claustrophobia (not sure that one is trending). But I’ve got Lorazepam and an eye mask, and Clarence the cow is coming with me. He said he doesn’t mind because he doesn’t find MRIs too scary. This is THE MRI, the results of which should hopefully result in me being referred for… TEETH! I’ll let you all know how that goes next Friday!

Happy weekend all. I’m treating myself to go to the Cabaret tonight after the MRI so I’ve got that to look forward to. Also catching up with a dear friend who is passing through London after visiting his mum who just had breast cancer surgery. I’m so excited to see him but I do so wish it were under better circumstances. All my thoughts go out to his family, I love them dearly and if any of you have a spare thought, please send one their way. But, to not end on such a sad note, last I heard she’s doing really well. So that’s worth celebrating.

A word about coping…

I look at those pictures of me in the hospital, you know the ones. And it’s almost like I can’t remember them. Like they didn’t happen to me. My mind has done some funny things about that time. It tells me of conversations I had with people, when I know I couldn’t talk. I suppose that’s the beauty of communication, that it doesn’t need to involve only words. But in my mind there were words even though I know there weren’t. Though I definitely do remember the frustrations of not being able to actually speak.

They say people can block out trauma. And I always thought that was weird and hard to comprehend, though I do know of instances of it happening. Brain’s foggy, big blank patches. I haven’t blocked out my trauma, but my mind has minimised it. I could tell you all about how bad it was, but I no longer feel it. When I look at those photos of me I think ‘that poor person, I just want to hug her and tell her it will be ok’. My brain has compartmentalised that and it’s not me, it didn’t happen to ME. It’s almost like it never happened at all. The lovely people I met, I remember vividly, every interaction with them, every conversation, everything they made me feel. But the bad bits? My mind is slowly but surely wearing them down, eroding them like the sand on the shore.

COPING MECHANISM

I guess that’s what it is. How long can I keep dwelling on the hardships I’ve experienced? Its much easier to gloss over them. That’s probably how I heal. But I can bring them back if I need or want to.

I was asked to summarise ‘my story’ for Macmillan the other day and it brought it all back. I was just small, lost Jen again not knowing what was happening. And I cried writing it down. I cried for all the frustration, all the pain, all the struggles. It’s there if I recall it, if I need to. And I will never forget it or what I went through. But by minimising it, my brain helps me to get through the day, to build back up, to crawl out of the hole.

So although it confuses me a bit, I think I’m grateful for it. I don’t need to feel that emotion, that hardship every day, so it becomes something that happened to someone else. That swollen faced person who couldn’t function very well and was lying in bed a lot of the day… That poor thing. I feel so emphatically for her. But that’s not me. I’m just someone with no teeth who can’t breathe through her nose, struggles with how she looks and gets tired easily.