Cancerversaries

Anniversaries. I’ve never been very good at them. Birthdays, yes. I love birthdays. But anniversaries of things, less-so (I don’t make a very good partner, for example). I just live too much in the now and don’t spend time dwelling on the past. Though I must say that every year I smile to myself when I remember it’s been another year since I first came to the UK. Although I’m not great at remembering the exact date, I still like to do something to mark the approximate day that brought me to this wonderful country. Every day I am reaping the benefits of that decision.

But cancer? Why would I want to forever mark the day that I got diagnosed with cancer? Or had major major surgery? Or anything, really? I’m not sure I would have even realised that it was coming up to my two year mark since diagnosis, had my Oncologist not mentioned it last time I saw him. Ask me when I was diagnosed and I would rattle off ‘August’, but I don’t spend every August thinking about how I was diagnosed x amounts of years ago. No, August is for summer, the Edinburgh Fringe Festival and my best friend’s birthday.

It went along the lines of: ‘next time I see you it’ll be past your 2 year mark’.
‘No… it won’t… surely…’
‘It will… right?’ he said tentatively as he furrowed his brow
‘Uh… oh… um… I think you’re right.
‘I am.’

Well that’s that then. He said 2 years is good. 80% of recurrences happen within 2 years, so once you reach that 2 year mark without anything ominous turning up on scans, your chances are looking a lot more fun. And I like fun.
(Disclaimer: latest scan results still pending but I’m sure I would have heard by now if my demise was more rapidly imminent than we thought, considering the MRI was a couple of weeks ago).

I started writing a post near the beginning of my diagnosis about how I couldn’t get onboard with the practice that everyone in the cancer community seems to take part in – counting every day since diagnosis, or since the first ‘no evidence of disease’ scan etc. It went like this –

The whole ‘__ days without cancer’ really doesn’t sit well with me.
I know people love it and I’m sure it’s really important for some people. That’s great. I’m all for whatever helps anyone, I’m not here to judge.
But the last thing I want is for my life to be defined by cancer. I don’t want to count every day that I’m free from it. I don’t want every day after this all finishes to have a cancer watermark on it.
Yes I know it could come back. And yes I know if it does, it’s really not looking great for me.
But I’ll deal with it if it happens.
And you know what? It might not.
The last thing I want to do is count the days until it returns.
So I’ll forget about it. I won’t forget about the things I have learned or the people I’ve met, and I know I will forever be having check ups and the like to remind me.
It’s great if the counting thing really helps people, everyone is so different. But I will not turn my life into a ticking time bomb.

I must admit, I wrote that back in the day when I thought I could package cancer up in a nice little box and put it at the back of my wardrobe, only to be opened on certain occasions when I wanted to remember what I had been through. I’ve realised since then that it’s not quite that easy, that I do have to accept that ol cancer thing as part of my life. It won’t always be such a big part of it as it was during treatment (I’m walking further away from it every day), but it is part of me and the person that I am now. It would me remiss of me not to acknowledge that I have changed due to everything I’ve been through, but I refuse to say CANCER has changed ME. It doesn’t have that power. I have only changed myself to adapt to my surroundings, which just happen to have involved cancer. That’s just being resilient. Cancer is a part of my story but I will not allow my life to be defined by it.

All of these dates come and pass without me realising (unless someone decides to remind me). I can’t quite remember which day in August it even was… And should I be counting it from the day the dental specialist said ’the biopsy came back and it’s cancer but I don’t really know any details’ or should I count from the first meeting with my Oncologist when I found out more about the diagnosis? Or when I started chemo? Or when the tumour was cut out? Or when I had my first scan results that said ‘you might still have cancer but we can’t see it in the scans yet…?’ Or do I wait until I’ve hit the 5 year mark and count from then?

In Hamlet, Shakespeare wrote “There is nothing either good or bad, but thinking makes it so.”
By dwelling on that diagnosis date with fear and a heavy heart, we keep ourselves stuck in some past time without really being able to properly move forward. They say the best way to get over a relationship that ends is to cut off all ties with your ex. Well you can’t cut off all ties with memories nor with the hospital you must return to for scans, but you can cut off ties with bad thoughts that refuse to let it all go and prevent you from moving on.

Our reaction to things is entirely in our own control, and ours only. Only we can free ourselves (though it’s ok to need some help with that).

Diagnosis date is the date that they finally took you seriously and confirmed that you’re not going mad, there IS something wrong.
Diagnosis date is the date that the whole world seemed to jump into action to do everything they could for you.
Diagnosis date is the date that this problem that had been lurking within you could finally start getting treated.
Diagnosis date is when you learnt who your true friends are and no longer had to deal with those who weren’t.
Diagnosis date is many things, but what it should not be is a yearly chance to wallow in self pity, obsess over what was, or keep you emotionally tied to a period of your life when you were incredibly ill and struggling.
And the date of your first NED scan or sign of being in remission (if you’re lucky enough to get either of those things) should be something that sets you free of your cancer, not something that defines the rest of your life by counting every day since. Yes, you had cancer, but that’s not who you are, and that’s not all you will be. Spread your wings and fly to freedom, hopefully forever, or at least as long as you are able. Enjoy every precious moment for what it is, not purposefully in the shadow of cancer.

I hear you ask: ‘But what if I use it as a reminder of how far I’ve come and that I should make the most of every day? What if I already do see it in a positive light?’
Do whatever works for you! But why can’t every single day you are alive and the sun rises and you breathe fresh air into your lungs be a reminder of how precious life is? I think there is a risk we get too preoccupied with cancer, and it’s fair to, it’s (hopefully) the biggest thing we will ever have to face in life. But let’s stop dwelling on it and let it go. Focus our attention on all the many beautiful things around us, not this one big thing that happened to us.

But now we’re talking about it (thanks Onc), I think yesterday was 2 years since I got my biopsy results back. So that’s cool. 2 years is apparently a milestone so I’ll give that thought a smile and move happily on.

Teeeeefff

So last week I went in to see my implants dream team for a quick check up to see how things are going. It was to be something like a 30min appointment and then off I would go to work on time.

Well, the Gods of healing and spontaneity obviously had other plans.

That’s a silly thing to say I know. Other plans were made space for by my wonderful implants team and supporting staff who rallied to make something special happen.

I’ll start from the beginning.

Always such a pleasure to see Andrew and Hannah, my implants heroes. I enjoy my appointments with them, and not just because I often get good news and make progress, but because I generally enjoy catching up with them

I got in the chair and Andrew started screwing the placeholder teeth off. I’m trying to remember what specific word he used, but for the life of me I can’t. But the gist was something along the lines of ‘Let’s see if they’re stable. They might not be. And if they’re not, that’s ok, they may still become stable. But let’s hope they are.’

So I lay there and crossed my fingers as he removed the teeth. Yes, I actually crossed them. Fiercely. And kept them crossed until he had checked all implants. First one, good. Two out of three are good. That one is good too.

Yes. That’s three! My crossed fingers turned into two thumbs up. And I smiled even though I had a mouthful of hands. Happy happy Jen.

They decided that since it was all healing well, they would change the… Um.. Abutments. There’s a good word for your vocabulary.

They’re the bits where the implants attach to my new teeth. If you remember, for the past two months I have had wax ‘placeholder’ teeth. They were loosely based on my mouth, but a mouth that was entirely different pre-implant surgery. So they didn’t fit properly, were uncomfortable and difficult to talk with and I couldn’t eat with them (or take them out).

Well, Andrew decided that since he was disturbing it anyway, and since it was healing nicely, what did I think of a better set of teeth? I smiled. Manically? Yeah probably manically. I liked that offer very much.

He got the teeth makers on the phone.
‘Do you think you might be able to make some teeth? Like now? She’s super difficult…’
Ok, ok, he didn’t call ME difficult, he would never do that. I’m obvi dreamy and so not difficult (ha, I think that probably depends on who you ask). But I do appreciate when he mentions that I’m a particularly difficult case. It drives home just what a fantastic job they’re all doing and reinforces that there was no guarantee it would all be going as remarkably well as it is. And I think that’s important. And heartening. But I digress. I’ve written about that before.

The teeth makers said yes, they most certainly could, and in fact WOULD, right there and then. It would just take a couple of hours. So my mouth was filled with wax and various other things to make impressions. Let me mention here how disconcerting that can be when you can’t breathe through your nose.

After all the prelim work was done, I needed to wait until they were done. He put some nice long rods onto the end of my implants which my tongue had a field day playing with over the next couple of hours (photo at the end of this post in which I’m looking particularly sexy. JOKES – prepare yourself). These were new, they hadn’t been there before. They were just for the moulds so that the teeth makers could see where the abutments were. They’re not still in now.

While we’re waiting for them to make the teeth, grab a cup of tea (I did) and let me tell you about my gums. The implants (metal rods) are just placed in my mouth wherever they need to be. Which leaves my gums trying to work out how to fit in around them. There are two points of my gums that pull and essentially tear a bit when I smile, eat, brush my teeth, etc. Imagine just on on the right hand side of your left canine and on the right hand side of your right canine. Does that make sense? My lip is essentially sewed in those two spots and when I smile it pulls. Too many boring details? Anyway, the left one had been bad over the previous week. So when I got into the chair it hurt, God it hurt. So we ended up injecting me with some anaesthetic. The exchange went like something like this:
‘Do you want some anaesthetic?’
‘No. let’s see how I go. Ow ow ow.’
‘You could have a bit…’
‘Should I? Whatever you want…’
*Stab Stab stab*
WHY DO MOUTH INJECTIONS HURT SO MUCH
I think I squeaked.
And then it went numb so that was cool.

Eventually I got some surprise new temporary teeth, and I’m allowed to start trying to chew on these ones. My other side connect first so these are just cursory and not that great for actual chewing (and crunchy things like raw carrot are prohibited). But they also look a lot better. As soon as I saw them I smiled. They fit a lot better (but not perfect yet) and are a lot less uncomfortable. So I am awash with smiles and hope. Oh and I ate a burger on the weekend! Without using a knife and fork! MILESTONE!

These are not the final set, but they are a big step in the right direction.

I still look bloody weird in most photos (most, not all) but I hope one day the swelling in my face will come down which might help with that, and hopefully my next teeth will be the final step in giving my face the shape it needs. It has lost a lot of of its symmetry and parts of it don’t really move anymore…

Oh well.

Getting so close………….

SO close.

My metal rods (you were warned):

New teef:

Katie Davidson, August 14 1984 – June 21, 2019

This Weltschmerz I referred to in the previous post likely also stems from a few other things I should fill you in on. One in particular…

Probably something I haven’t quite processed yet, on June 21 Canada Katie died. Only what, 2 months after Lucy? Some of you who have been here for a while might be surprised that it didn’t happen sooner, you probably thought I just didn’t mention it. But no, she had still been around, having thought she might not make it to Christmas so I guess you would say that’s good…

For those of you who don’t know of Canada Katie, I have written about her before.

She and I hadn’t been in direct contact for a while, understandably she was concentrating on her immediate realm of connections, but I had stayed in the loop through her amazing family members who accepted me into the clan. She said to me once ‘I can’t keep progression to myself until I’m at the end.’ And I knew that when she withdrew, it was because she was preparing. She didn’t want to drag more people through it step-by-step as it happened than she had to. I respected that, it was up to her to deal with it however she wanted to, and I knew that our love and connection was so much more than to worry about not hearing from her. In an entirely selfish way, it was hard. But I think should I be in the same circumstance I would likely do the same.

I got the message from her husband Keith that we were nearing the end. He took the time to let me know, with a wonderful amount of love and information. Early last year I hunted down my little cow Clarence’s brother and sent him to Katie. A little brown version of my little black and white Clarence. She named him Claxton, a British family name she had researched, and obviously related to my little cow’s name. She took him along to every appointment, he was holding her hand just as Clarence has held mine through so many things. I hope her husband won’t mind me saying, but when he messaged me in her final days, he let me know that Claxton was right there with her. I felt a rush of love in my heart for her, for him, for them all. She held Claxton as she was read her last rights. Keith even read out a message to her that I sent. I was also in contact with her sister in law. I felt like I was there, allowed into the inner sanctum, reaching out my hand to sit on top of hers as her chest rose and fell through her last few days of breaths.

It’s harder to process something like this when you hadn’t had daily contact with the person for a while, but that doesn’t mean she hasn’t been in my thoughts every day.

I wanted to share a couple of videos she made. Even while she was going through treatment for her metastatic breast cancer, she was doing these amazing projects – 100 days of Random Acts of Kindness, and 100 days of Gratitude, little Youtube videos where she spoke about things that she was grateful for and acts of kindness she had received. There are obviously a lot of them, but I thought I’d share the two she made about me:
https://www.youtube.com/watch?v=nuW9zFvqyLg&feature=youtu.be
https://www.youtube.com/watch?v=l5dc3ccGyrE&feature=youtu.be

Watching them makes me smile. And cry (especially in the second one). But it’s amazing to have these videos to watch Katie and a little snippet of our lives together frozen in time.

She sent me things too. She sent me a book she was reading that I expressed interest in. She made little notes to me in it about her favourite bits and the parts that meant something to her. When I bought my flat, she got flowers delivered to me from my local florist to say congrats.

I was even organising a surprise with her husband for me to go and visit them. Katie and I had fun talking about what we would do and where she would take me. I told her it all sounded great but I would also just like to sit with her and exist together, depending on how she was feeling and what she was capable of. But that was when she found out that it had spread and the treatment options were not working and starting to look worryingly limited and unfortunately, it was never able to eventuate. Though discussing the possibilities of my trip was a fun distraction for us regardless and provided a bit of hope in some tough times.

I learned so much from her. And we talked about everything. We discussed things like if there was a point when you stop accepting treatment. We discussed how to tell people about bad news. This was something that plagued her, as she hated feeling like she had let people down as she got more ill. I remember talking to her as she got one lot of bad results, she was dreading that she was going to have to drop it on Keith when he got home from work. I’ll never forget the times she told me bits of bad news, far more worried about how it would affect me than how hard it was for her. She felt terrible thrusting me into a world where my friend was dying. I told her that I had thought long and hard about this (after our mutual friend Amy died) and it was a decision I was actively making to be there, that I couldn’t imagine a life where I hadn’t met her. She thought a lot about those she would be leaving behind.

‘Today I’ve thought about you processing my death. It is impossible not to feel responsible. I know it’s not my fault but I still am so sorry.’

I would write her little snippets of what it felt like from where I was when she got the next set of bad news:

‘I’ve been watching the world pass these last few days, watching everyone go about their daily life. On the bus, on the train, going to work, going to the gym, meeting up with friends, complaining about the weather, small talk at the sink, ‘how are you’ in passing… In such juxtaposition to how everything would have just stopped for you since Friday. In my mind there is a little bubble around you, and the whole outside world just keeps running around busily and here you are, trying to deal with the biggest news, everything slowing down as you are suspended in this world of not knowing what’s happening and not knowing how to manage with any of it. I feel like I’m looking in to this little bubble, peering into your little snow globe from the outside, like I can tap on the glass and watch, caught between time being stuck with you, and these people rushing around behind me, their lives just ticking by day to day, not knowing the gravity of the last few days, not understanding how in your little corner of Ottawa, everything has just stopped.’

She would take the time to lay out all the information that she’d been given from her oncologist for me, and we would discuss it at length, trying to make sense of it, validating each other’s concerns, then distracting ourselves with stories of other things. ‘Tell me something good’ she would say and I would regale her with stories of people I had met or places I had been.

As you all know, talking about the language used around cancer is so important to me, and Katie taught me a lot about why certain words and phrases bothered me so much. I guess she had been living with cancer for some time when I jumped on the scene, so she was my guide. And whenever talking about these things I now think not only about me and my situation, but Katie and others who are in totally different situations and how things might come across to them. She led the way in vulnerability and honesty.

But we didn’t just talk about cancer and progression. I’ve been reading back over our conversations since it all started with our first interaction when I was trying to be open minded about reiki: watching our lives unfold as we told each other more and more about ourselves, sharing photos, and many declarations of love as our friendship grew from people who interacted on twitter to proper, true friends who would tell each other any news we had and share in the experience, be it good or bad things. We wanted to know what each other was eating for dinner, what we were doing on the weekend, we lapped up details of each other’s lives.

In those last few days that she was dying, I got this overwhelming feeling of ripples spreading throughout the world as Keith let people know online and people started to realise, the twitter world were contacting me to say that they were thinking of me, having seen first hand the public snippets of our friendship. Even people I had never spoken to before reached out. They knew.

I think she worried about being forgotten. Don’t we all? That when we no longer breathe, the memory of us will die too. That we will leave no legacy. But I felt her legacy in those days. I had known it prior, but it wasn’t until then that I really felt it. I pictured the webs connecting point to point across the world, starting in Ottawa and moving outwards until they traversed the whole globe. The different ways we had all been connected through Katie.

I take Katie with me every day. I have since I first met her. She’s there in every thing I do, every conversation I have, the way I conduct myself through life, in the advice and support I give to others. And I still want to message her when something good or bad happens so we can chat about it. But I can’t. I don’t think that ever goes away. Though I can check in on her family. You never want to make a nuisance of yourself but I’ll just keep myself in the periphery. These people mean so much to me and I won’t leave them.

I’ll say one thing, selfishly, about knowing someone you know is going to die (I know I’ve said it before, but I’ll say it again)… It gives you the chance to tell them how much they mean to you. Isn’t that a ridiculous thing to say? That you wait until someone is dying to tell them just how important they are? I like to think I tell my friends and family how much I appreciate them. Perhaps I’m more inclined to after a few drinks, but I have always made a point of telling people when they mean something to me. Even just if it’s just something small that I’ve appreciated. Don’t take for granted that the people you know will always be there. I told Katie regularly how much I love and appreciate her and how much she means to me so I have no regrets that she didn’t know how important she was or that there was anything left unsaid.

On her twitter bio she says ‘eternally on the brink of greatness’. But my dear Katie, you are not on the brink. You are eternally great. You were far too humble to ever really understand the effect you’ve had on the world, but I know you took great pride in everything you did because you were doing some fantastic work and there’s no denying that. I will love you forever and I will make sure people never stop hearing about you. You are and will always be a guiding light in my world.

‘A feeling of melancholy and world-weariness’

Today I woke up all panicky. Do you ever have those days? When you have an oppressive feeling of overwhelm? I didn’t sleep much last night. Well I suppose that’s quite standard these days, but with the combination of having had a coffee at 2pm (is that a thing now? Does an afternoon coffee keep me awake all night?) and there being a lot going on outside my bedroom window last night (sirens, people playing loud music, arguments and what sounded like a brawl… like seriously? What was up with last night?), I feel like I’ve started on the back foot today.

I don’t know if you notice this too, but when you’re already on edge, everything that happens seems that bit more stressful, like you’re not emotionally stable enough or well equipped enough to deal with minuscule things happening throughout the day. Everything seems to throw you.

Also after cancer you get massive life FOMO or something, and want to do everything, but your body (and mind) is just not capable and it’s this ever unbalanced cycle of doing everything and then having to do nothing. I usually feel like I’m on the verge of getting it right but never quite there. Some weeks better than others.

I was really ill for a couple of weeks (burnout? Maybe… Or just that time of year) which meant lots of moping around. Among other things, I was feeling really feverish so I took my temperature. 38. Shit. Panic. Call the Oncology hotline. No wait, it’s ok! That’s ok! A temperature is ok when you’re not neutropenic! And exhale. During chemo a temperature of 38 degrees would mean rushing to A&E because I had an infection and no white blood cells to fight it off. Without treatment and the right antibiotics swiftly, that would mean things were looking quite worrying. But now it just means a few days on the sofa. Triggered, but safe. Whatever has been going around at the moment has been far from fun though. But I’ve been back in action for a couple of weeks now.

The day before I got horribly ill, I gave a talk at an Advanced Airway Management Course for about 300 Anaesthetists and related staff. That timing worked out well, though it’s very reminiscent of being back at school/uni when you used to get ill after exams/term time when you had the time and space to rest. Our bodies do some interesting things like that, hold on until it’s ok to crash. Anyway, it was such a wonderful day and the feedback was incredible. I hope some more similar things come out of it, as I feel like there is a lot that can be done in the space of relating my thoughts and experiences to medical professionals. It seems useful for all involved.

But fast forward past the illness, I had a great week last week. A couple of standout events. One of my friends and I went to see a play written and starred in by someone she went to university with. Afterwards we went upstairs to the bar and were in the middle of being told about the fact that there was a ‘Trans Voices Cabaret’ night on when a flash of colour and wonderness came running up to me with a hug, and I found out that another friend was there for the TVC event. What are the chances. London is always surprising like that. So we stayed and were treated to a night of four absolutely incredible performers, and just a general wonderful vibe filled with support and love. I left that buzzing about the whole series of events.

On Saturday was Pride. My first Pride, which I realise is ridiculous that it’s taken me this long to get to one. What an absolutely fantastic day! A big group of us traversed the crowds and eventually ended up in St James’s Park having a bit of a break (and eventually at a pub). In another feat of strange interconnected-ness, while we were watching the parade, one of the performers from the TVC night on Thursday spotted me and said Hi. I have stalked them on Twitter and will be going to everything they ever perform. What a talent.

So it was a great day, but a long day. And a big day. Lots of crowds, lots of glitter, lots of partying and friends, but it meant I spent Sunday recovering and as a result didn’t feel like I got much achieved on the weekend. Monday appeared again and I felt like Friday only just finished. I didn’t really feel refreshed.

We have a culture of achieve, achieve, achieve… Or do, do, do… It can be hard to embrace the need to rest, rest, rest.

I have to remember that I’m still recovering. I had a chat last night with one of my friends who lives in Germany. I’m not sure why it’s relevant where she lives, I think I probably just want to sound cool for having a friend who lives in Germany. She was saying she’d had a difficult day and had been told to ‘find something to make her happy’. Which is great yeah, sure. But we discussed how sometimes there are just downs you have to endure. That the expectation of being happy all the time is deceiving and unhelpful. It’s a difficult one because obviously we should make whatever changes in our lives we can to be happier, absolutely. And we should seek out things that make us happy when possible. But total happiness all the time? Just no. We’ve got all these human emotions, we should use them. We should listen to them. We should work on good ways to help manage them, but to expect them never to happen is just setting ourselves up for failure, and for struggling even more with any difficult times that life throws at us.

She showed me this amazing picture she had created with a quote she had written. I asked if I could steal it, so here it is. It was a timely reminder. Maybe some of you need it too.

I was speaking to another friend the other day (not one from Germany – though you would be forgiven for thinking they might be, given what’s coming next – but incidentally the one I ran into at the TCV night, Rosa) and she was saying that she feels like we’re all a bit all over the place and a bit ‘floating’ at the moment. Who did she mean by all? I think probably a fair few of us friends from the cancer community are in similar places in our ‘recovery’. I’ve said it before and i’ll say it again, I think this part is the hardest, and we’re all a little lost. She later posted something on instagram about a fantastic German world that I wanted to share with you all, that I think also sums up life and the world a bit at the moment:

Weltschmerz
/ˈvɛltˌʃmɛːts, German ˈvɛltˌʃmɛrts/
a feeling of melancholy and world-weariness.

Why do The Germans have all the good words? Anyway, I was reminded to take my own advice that it’s ok to not be ok. Ah yes, noted. Well, on the flip side, it’s also not just ok if you’re really not ok, you shouldn’t have to just put up with it ongoingly, there are loads of resources to help. But it’s perfectly ok and normal to be struggling at times. As for my resources? Here is what I am using at the moment to stay sane.

  1. Listening to my happy playlist
  2. Watching ‘The Ponds’ documentary (it’s on BBC iplayer for another month for all you UK people, search for ‘swimming through the seasons’)
  3. Trying to find time to go for a swim at the Lido – but not beating myself up that I haven’t been able to go for a few weeks
  4. Trying to make time for pole dancing (my new fave Saturday activity and hilarious because I’ve lost a lot of my shoulder but I’m actually ok at it!) – but also not beating myself up as above
  5. Walk to work, but only if I’m feeling up to it
  6. Listening to ‘The Art of Asking’ by Amanda on Audible (if you have Audible, I can recommend you get on it)
  7. Using the Headspace app. So far today I’ve used their ‘SOS panicking’ one which was great
  8. Cutting down on coffee and alcohol for a little while
  9. Chatting to my friends
  10. Reading instead of TV
  11. Breathe (why is this so hard to remember to do sometimes?)
  12. Writing down all the ideas that fly into my head to let them leave again
  13. Making sure I spend the hour before bed winding down
  14. Try to get outside. Walking around London is one of my favourite things.
  15. BEING KIND TO MYSELF

Does anyone else have any things they do when they’re feeling like they’re struggling a bit with life?

A few pics to leave you on…

My Pride attire:

My talk:

So where am I at right now?

When I was about 7, I went to a gymnastics day at my local sports hall. For some reason I put sunscreen on… perhaps it was the day before that I put it on? Perhaps I’m mixing my memories, but this feels right. That day I found out I was allergic to sunscreen. Banana Boat, specifically. I suppose I had worn sunscreen before that, but that day we used Banana Boat and my skin screamed. I came out in big, scary, angry red welts. My skin felt tight, itchy, unmovable. I’ve always remembered the itchiness, but up until now I hadn’t remembered the tight feeling across my face and the inability to make facial expressions. As I tried to smile, the creases my face made felt like I had layers of thick mud on top of my skin. But no, that was just the swelling and reaction to the sunscreen.

Post implant surgery I have been like that again – not red, not itchy. But the tightness and the swelling has brought back memories to that day.

A particularly odd sensation – my ears have felt like they’re being lifted forward off my head. I’m not sure why, perhaps because of the tightening of skin in my face. I remember this from the last surgery too, but there was a lot of other stuff going on that it wasn’t my top worry.

Well the obvious thing to say is that what I’ve been going through this time is nothing compared to what I was going through coming out of surgery over a year ago. It doesn’t even register on the scale compared with that.

But with me being me and thinking everything will be ‘all good’… it’s also a lot more serious than I thought it would be. I’ve needed more recovery time than I was anticipating.

Weirdly, the pain in my face has been greater than it was from THE surgery. I guess it’s less numb now and I’m on less pain killers…

They cut all the gums in my mouth in order to access all the points they needed, so there are stitches and raw wounds in there.
My lips have been cracked and sore from a couple of hours of having tools shoved past them.
My face is bruised from having instruments on it and people working on top of it.
My neck has been sore from the angle they had me at during the surgery.
My jaw has been really painful.
My cheekbones ache from the inside and hurt from the outside. They feel bruised to touch.
When I wiggle my right cheekbone it wiggles my lip… that’s kind of fun.
I am exhausted most of the time.
I’ve had to sleep upright again, which has been mentally taxing. Trying to get comfortable by stacking pillows on top of each other has thrown me back to what it was like a year ago. Things always seem more difficult at night.

Sometimes I wonder how my body is able to take all this beating and still come out the other side, essentially functioning… But here we are, still going.

So. I went in to see the dental implant guys at Dawood and Tanner and they have given me some teeth… kinda. They’re just temporary teeth. Placeholders. They don’t really fit right (they just kind of stick out in the middle of my mouth), I can’t eat with them (super difficult since I can’t take them out…), but they’ll stay in for the next 3 months until I get my proper ones. I did a few videos on my instagram so you can see them – click on the circle on the top left that says ‘implants’ at the following link:
https://www.instagram.com/thecancerchrons/

They’re uncomfortable, painful, don’t look right and make it quite difficult to talk and obviously eat, but they look like teeth, and it’s nice to know that people won’t look at me strangely anymore. Well not quite so strangely, anyway. Still a way to go before we get them right, but I’m one step closer.

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!):

img_8414.jpg

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:

img_8425

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.