I FOUND MY BLOOD TAKING SOULMATE (now, if only I knew his name…)

On the first morning of my stay, I overheard the nurses talking about me when doing the handover.
‘She didn’t complain about pain last night but she did this morning’
Well I just said ‘could I have a paracetamol please’ but ok…
And the reason I didn’t ‘complain’ last night because I was naughty and medicated myself with the paracetamol I had in my bag.

Later that morning a nurse assistant asked if my throat was less sore… Not sure what that was about. I said ‘no it’s fine, I didn’t have a sore throat at all’ and she said ‘see, you’re getting better’. Well that’s an easy way to get medical success.

Anyway, I wanted to tell you about my new soulmate. It’s the same person who did the painless cannula on the first day I was admitted. I’d had the usual stress with people trying to take blood each day. On the second night they came to take blood from me at 9pm. That should be illegal. Causing trauma and pain just before bed time, getting you just when you’re at your most vulnerable. It might not be a surprise to anyone that this began what became ‘the longest night’ I wrote about in my last post. I felt attacked, violated. They came and poked me a few times with no success, I was in so much pain, the poor other people in my ward had to deal with my screams piercing the evening calm. Eventually they succeeded and dragged my blood out from me, sucking into their syringe while my veins (and I) screamed in pain. At 9am the next morning they asked yet again for more blood. Exasperated, I said that they got some 12 hours ago and they just didn’t need to do it again! Apparently they hadn’t taken enough and so it was tossed away.

The phlebotomist tried another couple of times on Sunday morning, butchering me with a huge needle right into the centre of my wrist. This was unbearably painful. She wrenched my wrist back and shoved it in and kept trying to dig for the vein while tears streamed down my cheek. Eventually she said ‘maybe there’s something up with that vein, I’ll try another’ and I had to tell her that it wasn’t going to make a difference, as I already told her, my veins are incredibly painful. All of them. I just couldn’t take any more. I asked her if I could refuse and she said yes, of course. THEY NEVER TELL YOU THAT YOU CAN SAY NO! Later, one of the doctors on the ward asked if he could try again for blood and I said no, I’ve had enough, and I burst into tears saying I wanted to wait until MY team came back. He defensively told me he is part of that team. I didn’t mean to offend you mate, but I’ve never seen you before and if MY surgeons need blood then they can have it, I’ll wait until they come in and ask for it the next day. I think the tears scared him and he said I could have a break for the rest of the day.

The other annoying thing was that I had a cannula in that bled back fine. I kept trying to tell them they could just use that but they were set on the idea that since it’s been used for antibiotics, it can’t be used for blood. I tried to explain the common practice was to discard the first few mls (10 if you’re being exact) and then take the blood and it will be fine. But they could not get their head around that. My other concern was that if someone attempts three veins a day with no luck, leaving me with a big painful bruise each time, I’m running out of options if my surgeons really need a sample.

Eventually we were happy that the swelling had gone down enough that I could be discharged into the comfort of my own home to rest and keep taking oral antibiotics. As I was getting ready to leave and waiting for my discharge papers to be finalised and antibiotics sourced, the doc who did the initial cannula came and asked if I would let him try for some blood. I figured it was the last time and it was him so I would oblige. To be fair, I did also want to know that the infection markers were going in the right direction too, even though it was becoming evident on my face.

He went and got supplies and drew the curtain and sat examining my arm in the dark. I asked him if he wanted some light and he said ’it’s all about feel and not about looks’. Well I was impressed. He put the tourniquet on and examined my few remaining veins we had to play with. He turned over my wrist and saw the bruise that had been left from the previous day’s attempt. He shook his head. Eventually he chose one. I commented on how they didn’t have the tiny oncology needles and he said ‘we do… have tiny needles…’ I looked down and he was right. It’s just the phlebotomists who don’t bother to carry the small needles. Insanity.

He went in, I looked away, obviously. I don’t have a ‘needle phobia’ particularly, but it does help if you don’t watch it going in. I felt the tiny prick through the skin, which is not even worth mentioning, and then nothing.
‘Is it hurting at all?’ He asked after a while.
‘No’ I said, ‘which makes me think you’re not in the vein…’
He said nothing. A short time later he said ‘all done, I got more blood than we need so no issues there.’

I just about kissed him. That’s 2/2 successful attempts with NO pain, trauma, stress, or discomfort. I couldn’t believe it. I told him he was going to have to be my own personal blood-taker-person from now on. He said ‘you are very difficult’ (the shirt I was wearing emblazoned with the words ‘problem child’ seemed fitting) but he said all it takes is a bit of patience and a bit of time and it’s easy to do it with no trauma, see?

I saw.

I’ve always told phlebs that I’M the problem, not them. And I get that my veins are difficult, but I’ve got proof that it’s possible to take my blood with no pain so I’m going to start holding bad blood-takers accountable for their actions. It doesn’t help that no one listens to me or believes me when I say my veins are difficult and painful. Then when I’m in pain they get annoyed. The phleb who didn’t take enough blood just kept shouting at me when she was taking the blood that ‘it doesn’t hurt anymore, I’m in the vein, you can stop crying, it’s over!’ Between sobs I got out ‘No matter how many times you shout that at me it doesn’t make the pain go away… I know you’re in the vein, that’s why it’s hurting!’ Afterwards she said ‘I didn’t realise you meant that your veins hurt.’ Oh ok so saying ‘my veins hurt a lot and are very painful when I have blood taken’ obviously wasn’t clear enough.

Anyway, I’m home! I’m feeling exhausted, my face is sore, I have a persistent headache and feel like I’m on the verge of a migraine (I can’t stare at a screen for too long without my eyesight turning into flashes) and just feel a bit gross from the antibiotics and infection fighting. But the swelling is starting to shift which is great. We’re still not sure what caused it specifically, but I’ll be meeting with my surgeons again next week to discuss what we do next. I wonder if they’ll know my soulmate’s name?

The longest night

By day the ward is a living, jovial, caring, nurturing, happy space.
By night it turns into an unforgiving beast.

By day the nurses are your compatriots, your friends. They sort things out for you, they bring pain relief, they bring smiles, laughs.
By night they feel like overlords, snatching you unceremoniously from precious sleep you only just managed to find.

Somewhere around 11:30pm, I am roused for an infusion. I think I’d managed to grab half an hour of rest, better than nothing. As I lie there, the words of my favourite Yeats poem come into my head and I repeat them like a mantra.

Turning and turning in the widening gyre
The falcon cannot hear the falconer;
Things fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world,
The blood-dimmed tide is loosed, and everywhere
The ceremony of innocence is drowned;
The best lack all conviction, while the worst
Are full of passionate intensity.

Surely some revelation is at hand;
Surely the Second Coming is at hand.
The Second Coming! Hardly are those words out
When a vast image out of Spiritus Mundi
Troubles my sight: somewhere in sands of the desert
A shape with lion body and the head of a man,
A gaze blank and pitiless as the sun,
Is moving its slow thighs, while all about it
Reel shadows of the indignant desert birds.
The darkness drops again; but now I know
That twenty centuries of stony sleep
Were vexed to nightmare by a rocking cradle,
And what rough beast, its hour come round at last,
Slouches towards Bethlehem to be born?

Some time after 1am I wander the corridor for my second trip to the bathroom. Mostly just because I’m awake and my nose is typically blocked, and I’m hopeful getting up for a walk will solve something, anything.
I pass someone else from my bay doing the same thing.
I can’t identify the look that passes between us but it must sit somewhere between an empathetic, understanding smile and a maniacal insomniac desperation. Or maybe that’s just me, maybe I’m projecting. In the morning she will tell me she slept well and I’ll know the truth.
We might be in this together but we are separated in our different cells, living our own experiences/nightmares just a few feet from each other.

Pain sears through my back and neck, hospital beds are not conducive to sleeping, not for me anyway, and I have to sleep upright again for the swelling. I haven’t yet worked out how to place my two pillows on the rubber surface of the bed in a way that doesn’t cause unnecessary pain.
My body cries out for a break for some sleep but it is not forthcoming.

I scroll my phone looking for something to help. In this day and age there must be some sort of app for that.
Headspace has a section that plays the noise of rain for 45 minutes. I put it on. It reminds me of home. I talk about London as my home and it absolutely is. I’ve been known to describe London as my life’s one great love story. It is the love I have chosen to spend my life with. It frees me, supports me in becoming who I want to be, while making me feel safe, loved and protected. But that doesn’t mean you don’t find comfort in your childhood best friend, which was and always will be my first love, Sydney. Going to sleep to the dulcet tones of rain pattering on the flat metal roof of my bedroom was a regular enough occurrence. My bedroom was once an outside deck before it got brought in under the rest of the house and became part of a strange long room which eventually reduced down into a smaller sized room that became my bedroom. We found our way to each other through a series of transformations. Some nights I heard possums scuttering back and forth across that flat metal roof. Dancing, chasing, sometimes fighting. Other nights it was the rain. I’ve always loved rain. When some people pull out their umbrellas at the smallest sign of it, cowering away and rushing to get indoors, you will often see me skipping down the pavement or spinning on the spot, my face up to the sky, my arms outstretched. The cool rain falling on my face grounds me and connects me to nature and the world. Falling on my head like a memory, falling on my head like a new emotion. It rains so rarely here that I almost forget the sound. But when it comes through my headphones I’m immediately somewhere else and the noises of the hospital fade away. I am free.

Until 10 minutes later when I get woken by a hand on my arm and a nurse wants to do my obs (regular observations – blood pressure, temperature, pulse, blood oxygen levels).
It’s 2:30am.
They didn’t do it at this time last night… What was it about this night that caught their eye?

I wander the corridor for a third time, trying to stretch out my neck which is in some proper pain. Paracetamol isn’t going to fix this. But I take two anyway. I half-heartedly look for a nurse but they’re nowhere to be seen. I go back into my bay and rummage through my own secret stash, quietly popping two out into my hand and washing them down, hoping that no one hears. They’re the uncoated ones and they catch on the back of my tongue, almost making me choke but I force them down.

I look at my bed with despair. Trepidation. It’s like choosing to jump onto a rack for some torture. But I see Clarence there smiling at me and I think ‘he’s right. It’s just gone 3am, only 3 hours until your next wake up call. Put on the sounds of rain, take him in your arms, rearrange your pillows a dozen times, close your eyes and just be still. There are no expectations of you tomorrow except to rest, it’s ok if you haven’t slept. Just take those three hours as an opportunity to exist as calmly as possible.’

Now I think of it, I had more pillows last time I was here. Maybe I’ll ask for them in the morning when the ward has transformed back into a place of love and light, and the long dark night is over. I picked up an extra blanket this morning having spent last night freezing and placing layers of jumper, cardigan and scarf over me. The lovely assistant Jenny brought me even another extra one because she didn’t trust me to ask for one if I got cold during the night. She was right. The night is not for asking. It’s for hiding and trying to keep a low profile so they leave you alone for longer.

My mum used to tell me things seem worse at night time and that is one of the truest lessons I’ve learned. No matter how bad things appear in the night, they will be slightly better when the sun rises and a new day begins. At night time all our fears parade themselves across the insides of our eyelids and sit heavy on our shoulders whispering into our ears.

I want to cry in frustration but I stop myself because I know that will only make me more blocked up. So I sit, and I shuffle around, and I wait patiently for the morning light.

This too shall pass.

Being back in hospital…

When I was at home over the last few days before coming in, with this ever swelling face, I was stressed about how I ‘should’ be, or the things I ‘should’ be doing. I’ve got an event to get to but I’m not feeling well enough. Am I going to be well enough to go to work tomorrow? Is this serious? Should I go to the GP? Should I go to A&E? Is it getting more swollen? Are the antibiotics working? All I feel like doing is moping around when I should be better. Why aren’t I getting better?

Being in hospital almost feels like permission to just be ill, that it’s ok to be so. Really, I feel ok apart from head pain and the uncomfortable-ness of the swelling. It’s not like other times I’ve been in hospital. Don’t get me wrong I still feel shitty, but I don’t feel like I’m dying. And I think I feel better for being in here because I can just sit and rest. I don’t have to run around and pretend I feel fine.

Being admitted also gave me justification that I am ‘actually ill’. I um-ed and ah-ed at going into A&E, feeling a bit silly to take up A&E time for a bit of swelling, but now they’re taking it seriously enough to actually admit me, that’s given me validation that I was right to go in. I don’t tend to think every little thing is serious, I suppose I tend to go the opposite way in which I assume everything is fine, which can be difficult in situations when you’re told to monitor yourself and make decisions of what’s best to do!

So I think it’s quite good to be here. I’ve got people keeping an eye on me, I’m forced to just sit and relax, I’ve got some time to write… It’s all worked out well, really.

Except for the cannula and the antibiotics. This is extra pain I would prefer to avoid, it’s an ongoing drama. There are so many nuances with using veins for cannulas. It is very rare they can cannulate me first time. If they try in the inside of the elbow and it fails, they can’t try that vein again further down. If they try in the hand first and it fails, they can then move up to wrist then inside the elbow. So starting low means more options and more chances. BUT veins in the hand are usually a LOT more painful to put drugs through. So I obviously want them to try for the inside-elbow, but that cuts out options if it fails. And it usually fails. It feels quite desperate at times.

Yesterday they tried in my left wrist which was so painful and they ‘almost’ got it but didn’t quite. That left a nice bump and bruise. Next they decided to try my right inside elbow (is there a better name for that part?). He spent a long time ‘examining’ my arm after applying the tourniquet, learning the lay of the land as it were, desperate to get it right. We all were. I willed my veins not to run away when he went in, as they are well known for doing. And………. SUCCESS! It didn’t even hurt when he put it in (other than the actual ’tiny scratch’ of the needle going through my skin). Maybe that’s what it’s supposed to be like! Everyone was very relieved that it was successful. I don’t want to jinx it but so far it hasn’t caused me too much issue. It hurts having it in, but the antibiotics haven’t started burning yet so I’m going to count that as a success so far. He was so worried I would pull it out accidentally that he made them bandage it up.

The antibiotics though… they’re called clindamycin. I got sent home with them in tablet form from A&E and they weren’t working so now I’m having it by IV. I posted a pic of my tablets on my Instagram story and someone messaged me saying they put a horrible taste in your mouth. I was like ummm… ok… not knowing what she was talking about. Then they brought me in and hooked me up to the stuff and at about minute 40 of the hour infusion, it flooded my senses. It was in my mouth, in the back of my nose. I’m not sure what it tastes like… just gross. Maybe like washing your mouth out with that antibacterial gel that you use on your hands. Yeah, that. Gross, but cool science when something can go into your arm and you taste it in your mouth.

Anyway, I’ll be here at least for the weekend, hopefully will get out early next week but it all depends on the swelling, which we think is going down a little bit but not in any haste.

And you may find yourself… back in hospital. And you may ask yourself, well… How did I get here?

So… I spent yesterday in A&E which was fun. Didn’t think that was still part of my life but maybe it always will be…

We’ll see.

I’ve talked before about how they’ve severed my trigeminal nerve, which tells my right eye to stop crying. Well occasionally it gets a bit weepy too. Fun. But it usually sorts itself out. It had been a bit problematic all week, but I woke up early Wednesday morning with really intense pain in my cheekbones and below my eye. It was bad enough to wake me up at 3am and then keep me awake as I sat moaning in pain. I took some ibuprofen which managed it a bit but it was just sore all day. I was working from home so I thought that would be good. Rest up, it would sort itself out. Well I woke up Thursday morning and my whole right cheek was swollen. This isn’t something I would usually rush to A&E about, except that right under that swelling is where I had my whole face cut out, rebuilt and then metal rods drilled through my sinuses into my cheekbones.

Oh yeah that little thing.

And if you remember how scary it was when something went wrong last year, when I had to rush back into surgery… Well it would just be silly to know something might be wrong now and not to flag it with my surgical team. They would know what’s up.

So I took myself into A&E at UCLH at about 7:30am, hoping I would be out in time to go to work. Well… I started writing this at 3pm that day, still waiting. I finally got out around half 4. NINE hours. That’s enough to even test the healthiest person in the world, let alone one who looks like a balloon.

I honestly wasn’t worried. A couple of friends messaged me asking if I was scared it was cancer. The thought hadn’t even crossed my mind. No, I didn’t. I was far more worried of an infection compromising the new bone and the implants.

I was in and out throughout the course of the day. First speak to the nurse. I liked him, he showed me a video of the foxes that live next door to him – three cubs were brought up by his neighbour so they just live in the backyard. I liked that. I like foxes.

Then I got blood taken. They were going to give me a cannula just in case and I said ‘if you’re not sure, then I don’t want it’ so she didn’t give me one.

A couple of hours later I got a cannula. Of course I did. It was one of the most painful ones I’ve had and I screamed. A lot. IV antibiotics next. Cool. (Well not cool, burning pain).

I just wanted someone to put in a quick call to my surgeons. I hope I didn’t seem rude when doctors etc. just kept suggesting things that made no sense and weren’t relevant, I just needed to have a quick chat with my team. But I guess they had to rule everything out. By the third time I’d said I haven’t been bitten by a bug on my face, I was just feeling tired of it all. And sore and uncomfortable.

Eventually I got to talk to Deepti on the phone, which always fills me with joy (you all remember her? My wonderful surgeon). She said it could be the implants playing up a bit and a course of antibiotics should zap it. She also wanted a CT scan just to check. The plan was to head off on my merry way and pop back in tomorrow to just check in.

My goodness my cannula hurt. I’ve never had the dye of a CT scan hurt so much. I cried and screamed. As I tend to do when in agony.

I was feeling ok towards the start of the day but after sitting in A&E all day, the swelling and pain was getting worse and worse. One doc said it was maybe something called periorbital cellulitis, another said it’s not.

I love you NHS but 9 hours is a Long time to spend in A&E.

I left with the plan to go back to see my surgical team the next day. I got a call from Andrew my teeth man that evening to check in (we’ve seen your puffy face, what up?!), was nice to touch base with him and I vowed to keep him updated.

So the next day (today), I took myself in to clinic and showed off my puffy face. Mr K asked if I had been in a fight. Obviously as a joke, but I really do look like I have been. Sarcoma UK were there too, taking some photos for… something… So I got to catch up with my friend Bevis from Sarcoma UK. That was nice. I’m not exactly at my most photogenic today, but the photographer was on my good side so that was something.

Mr K was asking if it has got worse, and me being me I was able to produce a photographic account of the last 24 hours, and we decided that it was in fact getting worse even though I was on antibiotics. That was enough to warrant admitting me. I was reluctant, but mainly because I didn’t have clean underwear or (most importantly) Clarence. So we negotiated and I was allowed to go home first, grab my little cow (and a few other things) and I then checked myself in to good old T6, the Head and Neck ward of UCLH. I’m baaaaaaack! Where all my UCLH friends at?

How do I feel about being in? No one wants to be in hospital obviously. But considering it wasn’t getting better and we’re going into the weekend, this is the place I need to be. Probs not going to make the music and philosophy festival I have tickets to over the weekend… But I guess being alive is priority. Always so needy for being alive! I thought I was out of the space where I couldn’t make plans because I might be back in hospital but it appears not.

What’s going to happen now? Well. More antibiotics, if I can ever find anyone to give me some. Going to have to go through the trauma of a cannula (let’s take a moment to remember my PICC line with fondness), and of course some shit nights (but let’s be real, I can’t sleep very well anyway since I can’t breathe through my nose at all, what’s some extra beeps and midnight observations). Monitor to see if the antibiotics help and if things get better. The other thing that was said was that there’s a part of the original reconstruction that could be removed, that there’s a chance that since it’s so close to the implants, it’s affecting the soft tissue in the space between it, which could give rise to ongoing infections and the like. So that’s interesting. There’s a chance I’ll have some surgery while I’m in here… But that was just something mentioned without much known yet, so we’ll see how I respond to the antibiotics and make a game plan. I’ll be honest, if more surgery means less chance of this sort of thing happening every few months, I am so in. But we shall see.

Right now I’m not too bothered about being here. Bring it on. But please give me some antibiotics… They haven’t been able to find any notes so they can’t work out what they’re supposed to do with me. I assigned myself to my bed. Thankfully Deepti told me which one was mine, because the nurses on the ward have no idea I’m meant to be here… They’ve never even heard of my surgeon which feels odd considering this is the Head and Neck Ward but… ok… Currently the nurse of my bay is having a nap in his chair so I guess he’s not going to try and find out what’s up.

The Head and Neck doc on the ward just came and saw me. She was the one I saw in A&E yesterday so nice to have some continuity. Cross your fingers for me that the cannula is successful, I think it’s on its way…

Want a pic? Here you go. I think I’m even more swollen than I was from implants surgery! It’s some serious swelling…

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.