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.

I couldn’t avoid it forever – cancer meets religion

I was hanging out in The Living Room in the Macmillan Centre a couple of months ago, waiting for my clinic appointment when I got chatting to a guy who was likewise wasting time like I was.

I’m not sure why we got talking, but we did. It’s not an uncommon occurrence in the Living Room.

He asked me what my cancer was and I filled him in. I also said I’d had surgery on my face, which he might have guessed from my swollen face, toothless grin and dodgy speech. ‘No, not at all!’ He said. I was surprised to think I was at a point where people didn’t notice. I mean we weren’t sitting close and he probably wasn’t scrutinising my face but still! I felt like it was big for me!

He has CLL – Chronic Lymphocytic Leukaemia. It sounds like a ticking time bomb. Absolute insanity. It’s funny, we discussed how my specific type of cancer suits me – my treatment might have been excessive, full-on, but it was always moving. Busy.

We discussed religion for a bit – he, the man who writes books about religion, me the staunch athiest.

I said I didn’t understand how you could keep believing in God after a cancer diagnosis. I mean sure, I get that people want to think there’s a higher power that will save them, that there’s a greater plan. For me, I trust in my doctors and surgeons, but his type of cancer is slow moving and they have a ‘wait and see’ approach (I don’t know how I would survive that, he’s amazing! But because of him as a person, not necessarily for his beliefs). So I understand a need for something that reassures you it’ll be ok. That you’re not alone (again for me, I get that from all you lovely people, not from a belief).

I said I didn’t understand how you could keep believing in God when you also believe that He’s given you cancer. That He thinks it’s what you deserve.

My new friend explained to me that he doesn’t see it that way. That the world is broken and God isn’t orchestrating everything, but He can help to turn it around. To make sense out of the senseless, to give you hope when you feel like you’ve lost everything.

That makes more sense to me. Though once again I’m amused at how differently religion can be interpreted to fit whatever you want. Though for the first time instead of seeing this as a criticism, it seems quite clever. I suppose music can be the same – different people can take different meaning from songs. It’s kind of like horoscopes – they work because WE apply meaning to ourselves.

And once again I’m reminded of MY purpose, of what means the most to me: People. All of you! You’re everything. YOU give me meaning.

He mentioned that being religious was about finding purpose in the world and that some people are happy to live without finding purpose and meaning.

I smiled, nodded and dismissed it. But thinking back, I don’t dismiss it. Not being religious doesn’t mean you don’t think about the ‘meaning of life’ or about your purpose, it just means you don’t take to thinking there’s a big man in the sky to explain everything. Way back in the day everyone was religious because that’s just how it was. As the philosophers, thinkers and scientists came out, they started to struggle marrying religion with the logic and truths they found out about the world. Now, we know to think of more meaning outside of the easy answer of religion.

But then again I suppose keeping faith in religion isn’t necessarily easy, especially with the things life throws at you.

He gave me a new way to think about religion in light of a cancer diagnosis. Though I’m not sure everyone has the same pragmatic view of it that he does, that the world is broken.

I don’t like to think the world is broken, I think it’s perfect. People are amazing, times are hard, sure. Really shit things happen all over the place. But have you seen the sun shine? Have you seen a stranger smile at you? Have you had a friend call to see if you’re ok? Have you ever had someone care? Even a little bit? These are your every day miracles. And its PEOPLE who are responsible for those perfect moments!

I have learnt a lot from this experience though. Before this I probably would have followed that last paragraph with something about religious people thinking that God made people be nice, that it wasn’t actually them. I think I was jaded by my great aunt when I was young who, at the end of a Christmas lunch my parents put on, would say ‘it was such a lovely day because I asked God for it to be’. She didn’t mean offence by it, but it offended me. It was a lovely day because of the people who made it so. My blood still boils thinking about it. She also thought God was concerned with making sure there was sun on the day she wanted or that I got into university (firstly God has bigger things to worry about, secondly it’s ME that got me into uni! Ugh).

I’ve been thinking a lot about the meaning of life and reading a lot about it of late. I’ve actually said this in a previous post and I will say it again – I have come up with these two things. It is our ability to choose how we react to situations. This is our humanity. We can have everything taken away from us except our ability to choose how to react to it. And it is our legacy. The things we did in our lives that affected people, the people we knew, the people we loved.

When I was writing this originally, I was talking to my parents about it. About the religion thing. I think it was my dad who said ‘There are ways of explaining everything, it all depends on how you want to look at it. It’s a non provable, non winnable argument. Just comes down to the person and what gets you through the day’. Trudat.

So I’m posting this, months after I started writing it, months after our meeting. Mainly because I was thinking about my friend, our conversation and how he is going. I liked him and I hope he’s well. If you’re reading this my friend, I hope you haven’t taken offence to anything I’ve said. I’ve tried to approach it pragmatically and write about how you changed my understanding of religion in light of cancer diagnosis. We will agree to disagree on this matter in general, but I think you are amazing and I hope you are doing ok.

FAQ

There are a few things that I get asked fairly often, so I thought I would put together answers to some of them.

Why are you so tired?

Someone asked me the other day why I’m so tired, why it’s taking so long to build up my strength. It’s a fair question. I wonder too. People told me it would be this way – people who had been through similar things, as well as my healthcare professionals. ‘You’ll need a staged return to work’ they said. Many people who have gone through similar things were surprised I started going back to work so soon after surgery. Others aren’t sure they’ll ever be able to.

I’m pretty good with 4 days a week at the moment, pre-empting that I’ll need one day to just crash. And I do. Four days in a row almost kills me so I need a rest. On my rest day, I can hardly move until about 2pm when I finally manage enough energy to get up. I’ll try stepping up to five soon.

But the question was why. I suppose it’s based on 7 months of chemo for a start. And on top of that, months of hardly moving at all. They say the effects of chemo can hang around for 2 years and I’ve been told to expect it to take that long to regain some sort of a normal life. Though I don’t feel like I’m that far away from it.

Then there’s surgery. My body has been using all its resources trying to heal itself. It hasn’t got many resources left to spend on getting me through a day of work.

Also, anaesthetic can take up to a year to get out of your system. I mean for weeks, months after surgery I couldn’t get through the day without a nap. I was exhausted all the time and everything completely drained me. I’ve got better than that, but I’m not better.

Then there’s the fact I can’t really sleep for long at all because I can’t breathe. Also my brain has been working in overtime since starting back at work. It’s not used to it.

Why can’t you breathe through your nose?

When they took out most of my top jaw, they also took the back of my cheek and the cartilage behind my nose. There was a possibility that they would rebuild the back of my nose with cartilage from my rib (!) but apparently my muscle density was really good so they just packed the muscle from my shoulder in there. By doing so, they blocked off my nose. It was intentional (so I found out some time later) – they did need to seal it all off so that I wasn’t effectively breathing through my cheek. It’s unlikely I’ll ever be able to breathe through my right nostril again. Not a nice thought. Hopefully eventually they’ll be able to do something about my left. I look forward to that day very much, I’m hopeful it’s possible.

Why don’t you have teeth yet?

It’s not because I can’t afford them, this too will be provided by my Guardian Angel, the NHS.

When they first put the new jaw/my shoulder/the flap in, it was huge. It practically took up the whole of my mouth. Over time it has shrunk back, due to the swelling going down as well as muscle atrophying due to lack of use (amazing medical science there).

I will be getting dental implants. I really don’t know anything about them or the procedure to get them but as far as I can tell, they are individual teeth that screw into your jaw. The new jaw needs to be properly settled before you start doing that. No, I don’t think dentures in the meantime are a possibility. The idea has never been mentioned, and besides – the new bits are fused to my cheek. There’s nothing for dentures to sit on.

They also want to make sure my first couple of scans come back with no sign of cancer before they go rebuilding teeth over the top.

I imagine the process of getting teeth will take some time but I’ll get back to you about that hopefully fairly soon.

You can’t grow teeth back naturally?

No. Wouldn’t that be the way of the future, teaching your shoulder to grow its own teeth… Not sure that will ever be possible…

Please if you have any other questions let me know. As you are all aware I am completely an open book. No question is a silly one and I would be happy to answer anything you’d like to know!

Want some good news? Well I’ve got some!

Friday was a good day. Not only was the sun out, and the weekend just around the corner, I got to see my favourite person, Deepti!

Let me start from the beginning. So I’ve got this hard thing in my lip, which basically holds it down my lip up into a very attractive snarl, while also pulling it into my mouth and slightly to the left, and makes it harder than necessary to drink, talk, smile, etc. I assumed it was a stitch that has yet to dissolve.

The lovely Deepti said she would fit me in quickly on Friday morning, so I went in to the Macmillan Cancer Centre and waited to see her. Before long, I was called in by one of the Clinical Nurse Specialists, and soon after that Deepti came in. First things first, she saw to fixing my hair, where I had managed to miss a bit when styling it in a hurry that morning and left some hair glue in without smoothing it down at the back. Sticky. She said it was somewhat endearing? I’m not sure that’s quite the word she used but I think it was the sentiment. Gosh, I’m a mess. How do you even see what the back of your head looks like? Doing much with my hair is all new to me and it seems I have a long way to go!

Anyway, hair crisis sorted, she looked at my mouth and said the problem was now just scar tissue and that the stitch had dissolved. A bit annoying, but what can you do. I’m now meant to massage it to try and get it to sort itself out. She said the flap was all healing nicely though and I don’t have to worry about being a bit rough with it because it’s all good. That was nice to know.

Then we discussed my next clinic appointment. It was scheduled to be before my next MRI, but as she had seen me now, it made sense to move it to after that. So that’s MRI end of August, next clinic appointment first week of September. ‘Pending a clear MRI result, I think we’ll refer you on to get teeth then’ she said.

Wait. Let’s do that again.

PENDING A CLEAR MRI, AT YOUR APPOINTMENT IN EARLY SEPTEMBER WE WILL REFER YOU TO GET TEETH.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!

Did I hear her correctly? Yes! Yes I did! As I was leaving, I also ran into Mr K. Now, Mr K is not one to commit to (or even mention) anything he is not sure about. ‘When is your next MRI?’ He asked. ‘End of August’ I said. ‘Well at your next clinic after that, let’s get you on to some teeth!’ Do-not-excitedly-hug-Mr-K-do-not-excitedly-hug-Mr-K-do-not-excitedly-hug-Mr-K-do-not-excitedly-hug-Mr-K (I refrained, but I did hug Deepti when I left).

I kept it under control until I left the building and then I did an excited squeal and jumped around a bit. When I arrived at work, one of my colleagues said he hadn’t seen me that happy in a long time. I thought about it for a moment, and I’d say that’s probably correct.

So I don’t know what this means, practically. It doesn’t necessarily mean I’ll have teeth in September, I don’t know how long it’ll take to get an appointment, and then I have no idea how long the process itself will take… weeks? Months? No idea. But this is movement!

I remember before surgery when I was trying to get an idea of a timeline of all this, they said it’s usually about a year before teeth. Always the over achiever, I asked them what was the quickest they have sent someone to get teeth, and they said 6 months. Well my next clinic appointment will be pretty much exactly 6 months post surgery. I am hopeful that they will all be finished by my birthday in December.

This is all pending a clear MRI of course. Every time I see my Oncologist, he tries to tell me it’s likely it won’t be clear, but my surgeons are pretty confident, and we have no idea to expect it to not be clear.

So I am counting down the days to that next Clinic appointment, and for that matter even to the dreaded MRI. I want teeth so badly. I would like to be able to breathe through my nose again too, but oh well, one win at a time. And teeth is definitely a big one! And at least then I won’t have to put up with people telling me how unimportant they are any more and that I don’t need them (I had the worst one of these conversations I’ve had yet just last week, it baffled me)!

HOORAY FOR TEETH!

Teeth thoughts and important (non cancer related) meetings…

People’s reaction to me wanting teeth is interesting. Most people are in the camp of ‘of course, it must be SO difficult without teeth’ but occasionally voicing my desperate wish for teeth gets brushed off with an ‘oh, that’s not an issue, teeth don’t really matter, you’ll get them when you get them’.

I’m not sure what the latter reaction is about. People who say it do mean well, and I know the main thing is that the cancer is gone but… Like… Would they think being without teeth is inconsequential if it were them? Eating is difficult, talking is difficult and I still look like there is something wrong with me… Is that something I should feel happy about and that it’s nothing? I know I’ve been through a lot and I am a lot better off now than I was a while ago but it doesn’t mean it’s all better and easy now…

Though people do like to believe I’m better. When I was having chemo I remember someone saying to me ‘oh so you’re getting better now!’ I looked blankly and said ‘well I’ll be getting a lot worse for a while… But yes, the idea is that I will eventually get better…’ Makes me feel for those who’s cancer/illness isn’t as black and white as ‘sick/better’.

But believe me, although I am waiting with bated breath for the day I have teeth, it’s not like I’m putting my life on hold until that day. I’m out doing things and meeting people, I never thought twice about that.

In fact I’m really starting to feel like me again (until I look in the mirror and see my face, but whatever).

This week we had a big meeting at work with a whole lot of our clients. A fairly daunting idea really in light of a year off from work, and not feeling up to full strength, and looking and sounding odd – thinking about meeting new people, catching up with old, having to remember details about things that have happened, presenting to a group of people who don’t have English as a first language…

But we have such fantastic clients. Catching up with the ones I knew was so lovely. They knew what I had been through, they even follow along with my blog (hi!). They were excited to see me and find out how I was going.

And the new ones were also so great and meeting them and chatting was no hassle. When I finished my presentation I even got a ‘Bravo!!!’ from the person I was sitting next to when I returned to my seat.

People are great. Aren’t people great? I really feel like I’ve achieved something this week! Also, it will be my first day of 4 days at work in a row!!! Yes, I will need Friday to sleep. But I’ve managed 4 days. And big days. I think I’ll try keep to this schedule for a few weeks and then see if I can step it up to 5 days.

On top of all this, my bestie turns up from Australia on Saturday. Haven’t seen her for over 3 years. If anyone is at Heathrow on Saturday and sees two hugging, crying girls… That’ll probably be us.

Watch out world, Jen is almost back, with or without teeth! (Though teeth soon, please, thanks)

The future is looking bright

‘Jen, you’re my last patient so you’re going to have to wait a bit.’ Said Deepti as she took in another patient.

I smiled. That’s fine, obviously. To be honest I was just really happy to know it was her I would be seeing.

‘Don’t worry, it’s all good’ she said with a thumbs up.

I breathed out heavily with a smile. I was waiting for the results of my first MRI post surgery. I know the surgeons were optimistic they’d got it all out but my meeting with my Oncologist on Monday had put a bit of doubt in my mind.

Did this comment mean the results were good? I would have to wait a bit longer to know for sure but I took it to mean all was well.

I wasn’t really *worrying*, I generally don’t worry until there’s actually something to worry about. But hearing these words, I did breathe a sigh of relief. A sigh of relief that felt like I had been holding my breath for days.

Some of my fellow cancer friends speak of ‘scanxiety’. They worry before the scan, during the scan, and then spend the time waiting for results, worrying that the worst will eventuate. I kinda get it… You want to be realistic. There’s a chance things are bad, prepare yourself for it. But I don’t think like this, in terms of worry. Sure, I have a quick acknowledge that there’s no guarantee the results will be good, but I wait until I know they’re not to start worrying about it. And even then my worry manifests as ‘ok well… What do I do now?’

No crippling panic, just a need to know the game plan.

But this time there was no need for a game plan. The news was good. The scan results had come back clear. This was no shock to Deepti, who had been confident all along. And I was confident in her. In my surgeons. That’s not to say there aren’t instances when it’s not entirely successful, I’m sure – they’re incredible, but some things just can’t be done. But they had thought at the time that they got the whole tumour out, so that’s what I was going on.

And indeed it’s looking like they have!

I’ve said it before, but Deepti is a truly amazing human. The amount of excitement and happiness and damnit, love! I feel when I see her is a testament to how great she is and how important her role is in the team. Her manner, her honesty, the way she truly cares… I’m already looking forward to seeing her again in 3 months.

Hell, 3 months!!! That’s just insanity!! It wasn’t long ago I was seeing them every day, and now I’m on my own for 3 months!! It’s pretty exciting really.

I also dropped in today to see Kat the physio, absolutely always a pleasure to see her. I unintentionally also visited my friend who I wrote about a few days ago – I only intended on dropping off a card but I ended up seeing him. I was actually really heartened by seeing him. I’m smiling now as I think of it. He still got a way to go but my goodness will he make it. I think back now to those days where it felt like it would actually never end. But that’s the important part… Think back. I still marvel at the fact that I’m 10 weeks post second surgery. I survived it. And he will too.

Anyway, it is well past my bedtime. The Moët I drank tonight in celebration was more delicious than I remember Moët to be. That’s the taste of hope, excitement, relief and victory. And the support I’ve received from people following this news has lifted me up so high. I love you all.