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!

Physio

You might remember that in hospital I had the most awesome physio, Kat. She was the perfect blend of sympathetic and no-nonsense, which must be so important when you’re dealing with people coming out of a big, potentially life-changing surgery. She’s not going to let you lie around and feel sorry for yourself, but she’s not going to push you further than you can mentally handle, and she carries herself compassionately. She was my best friend, we felt like a team. I’m sure I frustrated her to no end at times, always going too fast, trying to do everything myself, never relaxing, but she would patiently tell me to slow down and always with a smile. I’ve visited her a couple of times since I’ve been out and just seeing her makes me feel so happy. Kat, if you’re reading this, you’re the best and I should come say hi again soon!

Anyway.

Since I’ve left I’ve been back for physio, but as an outpatient (‘why does your face need physio?’ Asked my boss. ‘Not my face, my shoulder!’ Having a shoulder, leg and neck injury for a face surgery will never lose its novelty). So outpatient physio means no more Kat, but a brand new person! Gasp! Luckily ‘new person’ is otherwise known as ‘Francesca’ and she is also amazing.

I don’t know how these people do it, but from the second I met her I felt like I was seeing an old friend. She is so warm and approachable and… Well… Fun! When I go to an appointment, she not only cares about how my shoulder is, she cares about how I am. She wants to know how I’ve been going and we chat and catch up on the last couple of weeks. I’ve said it before and I’ll say it again, the professionals I have met along the way over the last year who make me feel like this are SO important. I’ve never felt like going to three appointments is a chore, I’ve never felt like I’m ‘ill’, more just catching up with friends.

She also doesn’t inundate me with exercises. I’m sure she could give me thousands, and I’ve had physios before who have, but it’s just not practical. As it is, I sometimes forget a couple (oops…) but I do try to be good, I promise. She also makes me printouts so I have no excuses to forget my exercises!

It’s a funny feeling as you get better and thus see these people less. Of course it’s a good thing, but it’s sad to eventually have to say goodbye to these incredible people who helped you through the hardest times of your life. Well all, if it counts for anything, I’ll never forget any of you.

Wow, has it really been a month?

So I’ve been trying to start going back to work. It’s harder than I thought it would be. That’s why I’ve disappeared from here for a bit, just concentrating on getting through the days. I didn’t realise it had been quite so long since my last post.

The first point to make is how lucky I am that my work is being so supportive. It sounds like a cliche but they feel like family, and they’ve been there for me when I’ve needed them. I could write a novel about how grateful I am.

People tried to prepare me for the struggles I would meet in trying to get back into life and work and I figured that wouldn’t apply to me. I mean hey, I was even working when I could during my months of chemo. Why would this be any worse? Oh wow, it’s worse.

Physically, it’s hard. I get tired (really tired) and some days I can’t even get out of bed, let alone out of the house, let alone do a day of work. But I managed four days last week, so I’m pretty happy with that. I don’t know why I’m so exhausted, I was bad from chemo but have been so much worse since surgery. It took me weeks post surgery to be able to get through the day without needing a nap. I’m better now, but definitely need to build back up to where I was a year ago.

At the moment it seems to go one of two ways – either I’m fine and can go to work and last quite well and be perky and useful, maybe even manage going out for dinner after work, or I can’t move or use my brain at all and even just talking to someone takes it out of me. There seems to be nothing in the middle. I’m learning what I’m capable of and what is pushing myself too hard. It’s so funny starting from scratch and having no idea what you can and can’t do. Everything I once knew has changed.

The other difficult thing is mentally coming back to work. I mean it’s hard to go back to work after a week off. Try being off for months after having had every part of you attacked. I’ve used my brain reading and writing over the past year but getting my mind back into work is hard. Chemo brain is a thing, and they say it can take a year to get anaesthetic out of your system. Having said that, I still remember everything that happened when I was there and have caught up on emails of things that happened in between.

But more than that, they have survived without me all this time, it’s been hard trying to work out how I fit back into it all. Am I still needed? And it feels so weird just trying to slot back into my old life as if nothing happened. I’ve been feeling pretty down over the last few weeks, just feeling so overwhelmed by it all and not knowing where I fit into my old life, or where it fits into me. But after the first couple of weeks of just focussing 100% on work and not being able to do anything else, I have started doing some socialising too, which has made all the difference. A Saturday night spent at the local pub with my housemates, a drink after work with colleagues. Getting back to work full time is my main priority, but I’ve realised I can’t do it at the expense of everything else, so now I’m trying to balance it with occasionally seeing friends. I even went to a friend’s gig the other night, and I just re-joined the gym and did my first (easy) workout in almost a year.

It will get easier, it will get better. But, as warned, this part is difficult. People say to me ‘wow! Everything’s finished, you’re all better now!’ I appreciate the thought and the sentiment, but that’s so far from the truth. But I’m doing well. I’m starting to feel a lot stronger. I’m struggling to get good sleep thanks to not being able to breathe through my nose, but hopefully the few hours I manage are enough to keep me going.

Everyone who checks in on me or asks when we can catch up gives me more strength, and every day I manage to feel more normal gets me one step closer to living my life properly again.