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.

MRI and all that

I suppose I should let you all know that I got a call saying there is nothing ominous in my MRI! Yay! To be honest, I had forgot about it, people kept asking me if I had heard and it took me a while to think what I was waiting to hear about. ‘you must be so anxious and stressed waiting’ they would say. ‘for…what…?’ I would ask. Lol clueless.

Next steps? Don’t know. Well, I do know. Teeth!! Actively? No idea. Hoping that referral comes soon, don’t know how long takes to actually get in to see the guy. But hopefully soon I’ll be seeing the man with the teeth about becoming the Jen with the teeth.

In other news. I’m now on the biggest extend setting of my jaw stretching machine. The Speech and Language Therapist said that should last me a while, but it didn’t – just over a week. She also said I could then put it on a bigger stretch setting but it turns out it was already on the biggest setting. So… Um… Over achiever?

Also this morning I rolled my ankle and got a sharp pain in my forehead… Not sure what that’s about. (Don’t worry, it’s not actually related to anything, just an amusing anecdote. Now if I hurt my shoulder and my top jaw hurt, that would be amusing).

Anyway it’s Friday again! They just keep coming, don’t they? Hope your weekends look bright! If they don’t, have a look to see what you can do about it. Even in your dark days there are things to be found.

So I finally met with my surgeon…

It was a busy day actually. I had to go in first for a chest x-ray. This is one of those things I have to have every two months. You see, the most common mets for osteosarcoma (look at me with my cancer vernacular. Mets = metastasis = spread) is to the lungs. So we keep monitoring. Monitoring is good. That was all quick and easy.

Made a new friend in The Living Room in the Macmillan centre, standard. Hi friend! Originally from NZ, we had some chats about that side of the world, as well as people, society, cancer and the cancer gene (Which fascinates me). It would be nice to catch up with her again one day.

When you’re in the head and neck clinic, you see all sorts of people who have clearly had head and neck surgery (or are waiting to). Head and neck people, I’m not judging you, I’m not pitying you, but wow. When I see what some of you have clearly gone through/are going through, gee do I feel lucky. I mean I don’t compare these sorts of things, not really. Everyone has their different struggles and everyone can find things about their own case that they are grateful for (I’ve written about this before). But I just want to give them a hug. I mean that would be terribly patronising if I did, but I give them a smile. And I hope they can see in my eyes that I mean it, and in some ways I get it. And please to all you who are struggling out there too, in whatever way, I want to give you a hug. Next time you see me/if we ever meet, let’s hug. It won’t cure any illnesses, but it’ll be a reminder that we’re never alone. And I care deeply about every one of you. I have a lot of love to go around.

Anyway, Deepti wasn’t in which was super sad because I was excited to see her! But I’m pretty sure she said she would be on holiday around now, so bloody good for her. She has earned that, she deserves that. Hope you’re enjoying yourself, girl!

So. Down to it.

Mr K: So you’ve spoken to the dentist?
Me: no…
Mr K: you haven’t?
Me: well… No…
Mr K: No dentists at all?
Me: ….

I mean I don’t know why he didn’t believe it, he has to refer me to see the dentist… And when I saw him a month ago he said today would be the day…

Anyway, I should be referred in the next couple of weeks. MRI results not in yet but once they are then I should hear about my referral. Apparently it’s not for their normal dentist guy because what I need is too difficult, though I didn’t really understand why. When I asked he said ‘because you can see the bone there and the soft tissue’. Ok… Were you not expecting bone? I mean you put it in there… I think… I was napping at the time so can’t verify but it is the commonly held belief.

I wish I’d had Deepti there to explain things to me properly. Mr K said ‘you know how we were waiting for it to shrink? Well now it’s shrunk too much. We need to get teeth in asap’. Do teeth stop it shrinking further? In which case… It’s going to shrink a lot more before I get teeth because they’re going to take a while… When I asked what he meant about it shrinking too much and that I had been concerned about that he said ‘teeth will help a little bit’. And that was the end of discussion.

It was all a bit confusing (standard). So he was surprised I hadn’t seen the dentist yet, but he can’t refer me to the dentist until he’s got MRI confirmation next week. And it’s been left too long and it’s shrunk too much. But when I saw him a month ago it was too soon and he said he would refer me now. And he glossed over the ‘shrunk too much thing’. And when I said I had been worried about that and worried that I would always look odd because of it and he said ‘teeth will help a bit’.

I mean I guess I knew that teeth wouldn’t really fix it. My face has sunken a lot, my nose has pretty much collapsed in on the right hand side of my face because it’s so sunken. So is that my life now? Deepti said previously never to say that, though is this the one time I should?

I love how seeing your surgeon leaves you with more questions than you had before.

But the main point I suppose is that once they get the MRI results, they are moving on my referral, so… That’s what I wanted I guess… I guess looking ‘a bit better’ is all I could really hope for but it was hard to hear. I guess we’ll wait and find out.

Oh I should probably also say… I had Oncology clinic today too, and the chest x-ray was clear. As expected. So that’s something. I’ll let you all know once I get more news. Bit of an anticlimax, I know.

I had a little cry about it all, but I’m ok. I am. Things are going well, really. But that doesn’t mean it’s not hard to hear some things.