Happy World Mental Health Day.

In fact without realising in advance, I had an appointment to see my psychologist on World Mental Health day. That’s nice.

My mental health is ok. It’s not great but it’s ok.

Some days I want to hang out with people, taking my mind off things and creating fun memories. Other times I just want time to myself. I need to lock myself in my room, not interact with anyone and get my head in order. On those days, any human interaction leaves me feeling shaky and drained.

I struggle with how I look. I struggle with fitting back into my old life. I struggle with knowing what I want. I struggle with finding meaning to life. I struggle with finding my purpose. I struggle with feeling empty. I struggle with people’s well-meaning advice giving, which makes me think I should be doing what they tell me to as opposed to what I actually want to do. I struggle with thinking about the future. I struggle with thinking about the past. I struggle with the fact I’m not well enough to do everything I used to. I struggle with how to say I can’t do something because I’m just not up to it.

That last couple can be linked to something I’ve learned about lately called ‘spoon theory’. No, that’s not an alternative to string theory, I haven’t become a physicist. The idea is that people with chronic illness have a limited number of ‘spoons’ that are used up by different activities throughout the day. Once those spoons are used all used, we just need to crash and recover. I’ve always been famous for using up my spoons and somehow fabricating more from thin air. But my dealer for my additional stash appears to have gone on holiday or got sloppy and was incarcerated or something. I don’t know. But I do know that now I’ve been left with just a regular set and I am struggling to work out how to assign them. And how to explain when they’re used up and I need to disappear for a while.

So when I’m using one of my spoons, I’m fine. I’ve got energy, I’m able to stay out, I’m able to do things fine. When all spoons are depleted, I crash. I think people found his hard to understand during chemo because the only times I would see people would be when I was good. So they couldn’t really understand how bad it was the rest of the time. It’s the same now. Work takes up most of my spoons, which leaves me no social life, which isn’t good for my mental health so… I don’t know, I’m a little lost really.

Anyway, I think everyone would benefit from therapy, but I appreciate that not everyone can afford it (mine currently is on the NHS and held in the cancer centre, an opportunity I am very grateful for). But there are other resources… I use the Headspace app every day, and I am always reading something about psychology. I’m learning to give myself the down-time I need, though it’s something I find hard and I am working on.

If I say I’m not feeling up to doing something, please don’t tell me I’m ‘getting old’ or push me to tell you what it is I’m doing that means I can’t make it (don’t make me say that I’m choosing to do nothing, though I feel like I should be able to say so without shame) and please don’t take it personally if I say I can’t come to something or if I cancel. I do worry that people will forget about me or stop inviting me to things but I’m still here! Still love you all.

Also all those things I mentioned that I’m struggling with, that doesn’t mean I am struggling. I’m not feeling excessively down, I don’t need cheering up, I’m not feeling sorry for myself, I’m just sorting a few things out in my mind. On any day, any one of us can be met with a whole barrage of thoughts and feelings. Some days I’m really happy, some days I’m sad. That’s life. I’m not struggling any more than the next person.

Regardless of a cancer diagnosis, I think it’s quite common when you hit 30 that you have a bit of an existential crisis. No longer making your way in your 20s, marked by a series of trials and errors, you’re expected to have your life together a bit more. Some of us do, some don’t. But does anyone really? What does that even mean and does it matter? I’ve heard friends say that they have grown up with an idea of where they want to be at 30 and they’re now stressing out that they won’t make it – marriage, kids, white picket fence in the suburbs… I know people who won’t leave bad relationships because 30 is too old to start a new one. To me that just sounds insane. I suppose I’ve never subscribed to society’s obsession with marriage and kids, but still. Things change. Priorities change. I’m not going to hold myself ransom to a version of myself I once thought I was or might be.

So on World Mental Health day, give yourself a break. You might not be where or what you thought you would be, and that’s ok. You’re where you are, enjoy it. Or you might be exactly where you think you should be, but you still have days where you struggle with things. I think a big part of life is learning to be happy with wherever we are, and make steps towards creating a life that works for us.

I’m exactly where I want to be right now, purely by nature of me being here.

Monday Monday Monday

And not just any Monday, but one that had the potential to hold news about small white things that go in your mouth and help with things like talking, eating and generally living.

Yes.

Teeth.

After weeks (months overall!!! 7 in fact!) of waiting and chasing, I finally got the call I had been waiting for: a referral to the seemingly elusive teeth man.

Let me try to explain the things riding on this appointment.

Firstly I was hopeful to find a timeline and course of action for teeth and hopefully get some information about the process because I have less than no understanding what happens or how it works. In fact the only things I know about it were from a chat with the CFO at work who seemed to have some very basic knowledge about implants.

I went in and had an x-ray first before seeing the teeth man. The machine played a strange digital rendition of Fur Elise by Beethoven. Which coincidentally is also the sound my doorbell makes. I tried to stay still and not giggle.

The waiting room was fancy. This place was fancy. The dental nurses wear white and the dentists blue.

My dentist Dr Dawood is my new best friend (yes I’m well aware I’ve got a few of them now). He was so nice, really easy to talk to, and also realistic. He looked at my teeth and asked if I ate a lot of fruit. Um… Not particularly… Then he asked if I’m vegetarian. No… Then he said ‘how have you been surviving?!’ I said brilliantly! I munch on everything!

So, we start on Wednesday (omgomgomgomg), taking moulds first. They will get the ones that Deepti took before surgery and make my new teeth just like my old ones! Cooooool.

First they will look at making a denture and see how it fits (if it even fits after everything that has changed in there) and then later consider implants.

Until we start trying we don’t know if it will work. If it doesn’t work, it’ll be back to my surgical team and back into surgery to look into more reconstruction from another body part. Yay for being plunged back into March.

Also there’s a good chance my lip won’t be able to fit over teeth anymore, especially with my sunken face, collapsed nose and the scar tissue from the stitches. So there might be issues there with actually fitting teeth in my mouth. And even if I can get the teeth in, they won’t fix these things so I’ll always look a bit odd. Better get used to being told by new people I meet that I have a cleft palate… Eye roll

But still, teeth is better than no teeth. And we’re aiming to have something temporary by the end of November! GUESS WHAT THAT WOULD BE IN TIME FOR?!! BIRTHDAYBIRTHDAYBIRTHDAYBIRTHDAY!

I was bouncing around manically and smiling rather widely as we booked in appointments over the next month or so. The receptionist who booked me in was lovely but I had to laugh. She asked me if I’d had an accident and I said no, cancer, and they cut my jaw out and now I’m just waiting for teeth.

‘Oh so your mum or dad has it too?’ She asked.

‘No, there’s no genetic link for bone cancer’ I replied.

‘And you didn’t smoke or anything?’

‘Lol no…’

The old what-did-you-do-to-cause-it-so-I-can-check-I-won’t-get-it job. Sorry love, you’re just as likely to get cancer as I was. Most cancers don’t have a genetic, environmental or lifestyle cause, we didn’t do anything wrong to bring it on ourselves…

Always in my thoughts, now more than ever…

Yesterday my dear friend Katie started whole brain radiation (Canada Katie – we shall refer to her as Canada Katie, as she is an entirely different person from my long time friend Katie who came to visit from Australia a couple of months ago and we don’t want to give that Katie cancer by way of me not distinguishing between the two).

Sorry, let’s just do that again.

Whole. Brain. Radiation.

Have you ever heard a more terrifying three words?

Though i suppose they are trumped by three more words…

Trying. To. Live.

And at 34, she has a lot more living to do, despite terminal breast cancer doing its best to stop her. Once you get metastatic breast cancer (i.e. spread) you never get rid of it. The intention is to survive as long as possible, but you will never be cured. I know a lot of people living with their metastatic cancer. It is possible.

From this absolutely hectic treatment, she will lose her hair once again, and suffer all the horrible side effects like nausea, fatigue, memory and cognitive issues and months of recovery. This obviously bothers her somewhat.

We had a chat a little while ago when she first found out it had spread upwards, about where the point is that you stop opting for the ridiculously quality-of-life altering treatments like this. It’s not now for her, thank goodness, and hopefully we’re a long way from that point. But I can only imagine what it must feel like to keep going through this. To be facing another round of treatment and knowing what a toll it will have on her body and her life.

Her brain is still fine but the cancer has spread to her cranium. The plan is to ‘radiate the hell’ out of her head (in her words), which will hopefully zap the skull guy, relieve the pain and pressure, then we can go back to managing the cancer in her liver.

Big sigh.

I say ‘we’ because she and I are such a team. I mean obviously this is all on her, unfortunately she is the one struggling through this, and if I could take some of it for her, I would.

Sometimes I feel like a broken record, going on and on to her about how much I love her but oh well! This girl has helped me through some hard times and celebrated with me through the good.

My dear (Canada) Katie, I just want to say a few things to you.

You have changed my life.
You have changed the way I think.
You have given me so much courage.
You have helped me know what to say at difficult times.
You don’t know how often I think WWKD (or should I say WWCKD).
I am so proud of you.
My life is so enriched by you being in it.
I am always here for you.
You are a testament to how people should live their lives.
There is a lot that people can learn from you.

To everyone else out there, she could do with all your thoughts right now so if you don’t mind shooting them all over to Canada to hover all around her while she goes through this radiation treatment over the next week, it would be much appreciated. I’m glad Clarence’s brother is over there looking after her too.

So while you’re getting ready for work or starting your weekend and have a thought that at least it’s Friday and you’ve got two days of freedom ahead of you, or that you’re exhausted from a hard work week… Just spare a thought for Canada Katie. And for that matter for anyone suffering, for whom a weekend is not an escape from much at all right now, or who would give anything for their biggest problem to be that their boss yelled at them or their colleague was being a dickhead.

That’s not to say that every day problems are not legitimate problems, if I was ranting to her about an every day issue in my life, she wouldn’t for a second not want to hear about it because it’s not as dire as her problems. She is happy to hear my good news even if her news is bad, etc. We can compartmentalise these things. We still want to hear about you even if we’re going through a bit worse at the moment. (Though while I’ll absolutely sympathise about how much your finger must hurt after shutting it in a door, please don’t tell me that your nail falling off is the worst thing that you could think of, and how will you possibly survive if it doesn’t grow back looking normal… Even if it is the finger your engagement ring goes on… I’m sure you’ll find a way.)

So please spare a thought for Canada Katie. Love you girl, I’m here for you all the way.

#scancitement – my version of #scanxiety

This post probably has more relevance for my cancer friends and family, the rest of you might not quite understand what I’m going on about, but please bear with me. Here is an insight into the world of regular scans.

You might have heard (well… read…) me say before, I don’t get #scanxiety. I don’t see the point in assuming something is bad before I know it is, that just sounds stressful (yes sometimes I’m too logical for my own good but in this instance it’s useful). In fact I think scans are great. They either prove things are fine (yay!), or they catch anything that isn’t (phew!) then you can start doing whatever is needed to manage/reverse what the scan shows.

So I suppose instead of #scanxiety I get #scancitement (slightly less catchy). The results either make me happy that things are good or relieved that whatever is not good has been caught. I guess you could favour being blissfully unaware of things being bad but that’s not great and especially when it comes to cancer, which can lead to things getting a lot worse very quickly.

It’s not that I’m happy-go-lucky, ignoring the possibility that the results could be bad, I do prepare myself mentally that the results may not be good, but that’s as far as I go. I’m not minimising other people’s fears when it comes to scans (and a lot of people get a lot worse results than I have so I’m only commenting on my own set of circumstances), I totally get that it’s not something that people can just switch off, I’m just saying that these fears don’t apply to me.

So I don’t tend to think things are bad until I find out they actually are, which is generally a good thing, but can also have some not so great side effects when it comes to early detection for if my cancer comes back.

I’ve had chronic widespread pain for years and I just put up with it (doctors are yet to find what causes it, I suspect it’s fibromyalgia, or something equally as useless to diagnose and treat). My cancer didn’t present with pain but that’s not to say it won’t if it comes back. I’ve had quite a sore back for the past week, no I don’t think it’s cancer in my spine, but will there be a point where it actually is, and I ignore it for too long and just chalk it up to some other unexplained and inconsequential pain? If I were to go to the doctor about every unexplained pain, I would be there weekly and they would never take me seriously.

I also tend to have IBS symptoms fairly often. How will I know if it’s just normal or if I have bowel cancer? My Nan had bowel cancer… (I have learnt from my amazing bowlie friends to look for blood/changes so I’ll keep that in mind).

It’s really hard to find a balance between getting everything checked and getting nothing checked. Where do you draw the line?

So I am grateful for scans. They take the pressure off me. Although the ones I have won’t pick up other cancers, they are at least checking the most common places for mine to spread to, so that is a relief. If I could, I would opt for getting everything scanned regularly, including blood tests to check for things, and whatever else. That way it wouldn’t be up to me at all and I can forget about it, knowing it’s not my responsibility!! Now that would be a relief!!

So… I went on BBC…

So I had a bit of an exciting day yesterday, you might have seen on my various social media accounts (or the tele for that matter) but if you haven’t…

I went on live TV.

On BBC2.

On the Victoria Derbyshire show.

Oh my goodness.

The day started with meeting my two Macmillan support team girls. They were incredible. I seriously love them so much, I want to be friends with them (Creeper)! They came in with me and even sat in the wings supporting me while I was on set (creepers). Having them there made it so much fun!

We had a coffee and a bit of a chat in Pret beforehand, all super excited about the adventure we were about to embark on. None of us could stop smiling. Next thing, off we went to the BBC STUDIOS.

Did you know that there is a Dalek and a TARDIS in the foyer of BBC Studios? Halfway through getting our passes made, I spotted them and excitedly said to Ellie that I needed a photo. So she and I ran off only to get called instead to get our bags checked by security, and then she had to go back to actually pick up her pass. I was being such a tourist, way too excited. But we got the photo (shown at the end of the post).

Someone came to get us and we got taken in, first walking above the BBC News room. I was in awe, this place was just incredible. Working at BBC has kinda been a dream for me so seeing the insides of it was exhilarating. One of my support team, Sima, had worked in broadcast journalism before for many years and was being so cool about it all. I was not cool. I was like a kid in the biggest magical sweet shop in the world.

Next I was in to hair and makeup and the lady who was making me ‘camera ready’ was so lovely. We chatted about how her husband had cancer and just generally about things – she said I have nice cheekbones as she put blush on me. I will endeavour to start wearing blush (blush? Blusher? I’m so makeup uninformed).

Then it was into the ‘Green Room’ to wait. On the show with me were some Head Teachers who were part of a demonstration outside Downing Street. As a result, The Green Room felt a little bit like a staff room. They were all lovely though.

First I was to be in the opening scene, so I got to sit on the couch and smile at the camera while my segment was introduced. That was quite good because I got to see the studio before I was actually required to do much. We started and I was wondering why the host was so quiet, but I smiled at the camera on queue. Turns out it was only 10 minutes to 9 and that was a run-through. Phew. I had another chance to perfect my smile. She was eventually mic-ed up and in 2 mins… 1 min… 10 seconds… 3, 2, 1, we were on!

Being in the studio was so cool, I can’t even explain how amazing it felt to be seeing it all in action. I must note here how lovely everyone I met at the BBC was. I suppose that’s important for a show that has non-professional people on it, it helps to make them feel comfortable. But from the host (Joanna Gossling hosts the Victoria Derbyshire show on Fridays) to the person who brought us in and told us where to go, to the person who set me up with my mic, to the person who got me on and off set, to the camera girl… And of course hair and makeup. Even after the intro I got a smile and a ‘well done’ from everyone, including the host. In fact Joanna even came up to me specifically before the show to introduce herself, say hi and tell me how good I look. I was among friends here.

I was walking around and sitting, grinning like a maniac, having such a great time. Was I nervous? No. I love being the centre of attention, any chance to show off.

The interview itself went for about 10 minutes. They put it together really well, including using the pictures I took after surgery as a kind of time-lapse presentation. It kind of made me realise that I now have this ability to relate to quite a few different people – those with cancer, those who have had extensive, invasive surgery, and those with a facial disfigurement or has had their face changed in some way.

And I really hope that some people saw this interview and felt less alone, less helpless. If anyone has found their way here on the back of that interview, please don’t hesitate to say hi! Welcome.

To anyone who hasn’t seen it, I will link to the BBC Iplayer below (unfortunately this is only available to my British friends and family. If you’re outside of the UK I am not endorsing the use of a VPN to watch it because that is naughty, but I’m not sure of any other ways you can all see it). I will also link to the article that the BBC wrote, which has a small clip at the bottom.

Thank you to everyone who made this happen. I feel so lucky for these opportunities and the fantastic people who make my life so damn enjoyable no matter what I’m doing. I’m grateful for every smile, every show of support, every person who listens to what I say. Thank you.

Edit: I got it on YouTube! International friends and family, please watch here! Hopefully BBC won’t get grumpy and take it down:

https://youtu.be/isKTnBH5JWg

Iplayer link (only available for a month from airing date) – see 39mins for my segment:

https://www.bbc.co.uk/iplayer/episode/b0bl6jhr/victoria-derbyshire-28092018#=

BBC article with clip:

https://www.google.com.au/amp/s/www.bbc.co.uk/news/amp/health-45670860

A couple of other short clips of it, depending on your favourite platform… (The two twitter ones are practically the same as the one Facebook one)

And some photos…

What the experts say…

Every time I see my Oncologist or Surgery team they send a letter to my local GP, the onc at my local hospital, and good ol Sproaty who gave me my diagnosis. And a copy goes to me too. My name gets a tick next to it on the letter that comes to me. I like the thought that everyone gets their own tick next to their name in their copy of my cancer story.

These letters are kind of a way that us patients find out the more specific details of our condition. Maybe add a bit more to the things we’re told, sometimes fill in the gaps.

Each one describes what was discussed at that specific appointment but there is a big bold bit at the top that stays the same each time, though bits have been added as time has gone one. So this is it. This is me…

Diagnosis: August 2017: localised high-grade chondroblastic osteosarcoma of left maxilla. To commence neo adjuvant chemotherapy (cisplatin, doxorubicin, methotrexate).

Treatment: 8/2017 – 2/2018: MAP chemotherapy, complicated with AKI which was reversed, methotrexate was stopped after cycle 4.

Surgery: 5.3.2018: Mid-facial degloving access – right maxillectomy, unblock with nasal bone up to the inferior of the medial canthal area and to the level of the zygomatic buttress, including pterygoid plate. Reconstruction with a chimeric latissimus dorsi and tip of scapula bone flap.

Histology: High grade chondroblastic osteosarcoma — several close margins of a few millimetres – tumour presence on the right zygomatic buttress. Therapy-related tumour necrosis is <50%.

Not sure why they keep insisting it’s left maxilla at the start, it wasn’t. Anyway, sounds like they cut out the correct bit…

It’s always fun reading the letters they write. I feel connected with everyone and informed. And hey, who doesn’t like reading about themselves?

Yes, I had to do a lot of googling of mentioned terms. Had no idea what most of them meant…

On the Fringe…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sound like an analogy for something?

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

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

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

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