‘Life is full of uncertainty…’ And other life lessons in places you least expect them

I manage client correspondence at work. Recently our generic email address has been getting some odd spam. People wanting to improve SEO for our website, wanting to sell weight-loss pills, viagra… the random usual things like that (I’m not sure we’ve actually had any of those last two but hey, creative license, it’s my blog).

We have some Chinese/Taiwanese clients and occasionally they will write to us in Chinese. Luckily one member of our team is from Taiwan and can handle these requests (I mean it’s not luck, it’s part of the reason she was hired…)

We got one the other day in Chinese and I couldn’t work out who it was from. I asked my colleague to look at it and as soon as she did she immediately burst out laughing. Not moving my head, I looked at her sideways from were I was sitting next to her at my computer, wondering what was going on. I pulled up chat to ask her what was happening and she was already typing.

‘omg’ she wrote, ‘I need to translate this for you. Hang on’

I hung on, the suspense bubbling up inside me. Eventually it was time for the great reveal…

Life is full of uncertainty, where you can find peace of mind is where you belong.

No matter how many difficulties you have gone through, there will still be flowers, butterflies and sunshine.

Being angry is taking others’ faults to punish yourself. Forgive others, let go.

That was it.

Well, I tell a lie. At the end it had a slightly more nonsensical phrase: “If people go to the big cities to fight hard, that is a foundation. If not, if it fails, maybe even today’s life will never be there again.” Not so sure what that’s getting at so let’s gloss over that bit for the sake of a good story.

We laughed, it was hilarious to think that we were worrying we had some complex issue to solve, when someone was just educating us on… I don’t know, Buddhist philosophies or something…

But struck a chord with me, so I kept it.

There really is so much uncertainty in life. And thinking that we have control over anything can set us up for failure and disappointment. Pinning your hopes on everything panning out will only end in tears. Much better to find peace in just being, and let other things come and go without vesting too much in them. Some things don’t work out, and that’s ok. There will always be more things. Other things.

Us millennials are obsessed with journaling and morning pages and gratitude logs and you might well roll your eyes but there is something in that. It goes right back, even everyone’s favourite Stoic Epictetus spoke of practising gratitude. If you make note of the good things that happen, you’ll find that the difficult things don’t seem so bad, they may even fade in comparison. They say that people who actively practice gratitude are much happier humans living fuller lives. ‘Wholehearted people’ if you’re into Bréne Brown. I don’t necessarily have to actively make a point to do this, I just naturally tend to fixate on the good things. For example, I am not angry or sad that I got cancer, I am only grateful that it was found, and that it happened in a time in my life when I had the beauty of the NHS behind me, an amazingly supportive employer, and my lovely friends and family. Yes, I feel lucky. I see those flowers (you all know how much I love flowers), butterflies and sunshine every day. Even if nothing seems like it’s going right, all it takes is a stranger to smile or hold a door open for you and there is something to be grateful for. And if you manage a day where you see a cat… Well… Wow! Cat!

The final point I really struggle with. I do get angry at people. I don’t get angry at things that happen that are not anyone’s doing, there’s no point in that, but I get angry at people who are rude, who are not kind to others, and who stand in the middle of a crowded footpath (seriously, guys!). I do judge (I think we all do) and I do get far too wrapped up in what other people are doing. I find it hard to let things go and I find it hard to forgive people if they haven’t done right by me or someone I love.

A friend of mine said the other day ‘we are all just our parent’s experiments’ and that the really stuck with me. We grow up with our parents teaching us everything. They have all the answers. But now we’re their age, do we have any idea what’s going on? (Seriously though, how are our parents so on top of getting the washing done? I challenge you to find one millennial who doesn’t run out of clean underwear on the regular). But anyway there is a point to this, bear with me.

Our parents love us and do everything they can to help us but they’re just people too. Those annoying habits you picked up from them? Those strange things they do (ma and da, I’m totally looking at you)? They’re just trying to navigate the minefield that is life too. Does anyone truly know how to adult?

And that person at work who snapped at you? They’re dealing with their own things, the last thing they are thinking about is how you might deal with the fact that they’re under a lot of pressure. Yes, we should all try to be kind at all times but we’re all just trying to get by, we mess up. Give people another chance (but not too many…)

I will try to take my own advice.

Somewhat related, I’ve taken to doing Friday night Tai Chi at the gym I have a 12-week pass for. I have been really enjoying it. An hour on a Friday to be away from my phone and just get grounded before the weekend. Yoga is a bit difficult for me at the moment but Tai Chi is spot on. Life is so damn hectic, it’s nice to have a break sometimes. I’m working on being more calm. I’m quite laid back but not so calm. I’ll get there.

So heading into this weekend, take some time to think of the things you are grateful for. Don’t rush through it without taking the time to savour those things that make it really special, that make your working week… Well… worth it! And try to do one kind thing for someone who doesn’t expect it. Studies have shown that doing something for someone else actually brings us greater and longer lasting joy than doing something for ourselves.

But do something for yourself too, life’s too short.

The next page in the teeth story…

I had another appointment with the teeth man today. Actually at the moment it’s the teeth woman. She’s working with me to see if we can make a temporary denture-type thing for the time being, before we start looking at implants.

Today it was to see if something will fit in my mouth and to see how far we can build it out to hopefully make my nose and face less collapsed. The answer is not very far. I still have this bit of scar tissue right across the inside of my lip which means that when teeth go in there, instead of pulling my lip into my mouth as it does now, it pulls my lip up into a super attractive snarl and I can’t close my lips. Which leaves me looking rather ridiculous. My nose is still collapsed, my face still sunken and I’m snarling with open lips.

So…

I’m not sure where to go with that. Also as it will all be held in place by the few teeth left on the left hand side of my mouth, I think it will be rather loose and might not make talking or eating very easy.

I was holding out hope for this next step to make things a bit better, but being hopeful does tempt fate and I should really have known better. I guess I was prepared for this… It’s still a bit disheartening. But on the way home I discovered that Bowie narrated Peter and the Wolf and it’s on Spotify. So… I feel like that’s some sort of consolation.

They’ve made some super cool moulds of my mouth, which are fun to look at. They were less fun to make. As I can’t breathe through my nose, it’s a bit of a nightmare to have your mouth filled with the gooey stuff they make moulds from. At one point she covered up my teeth completely and I couldn’t breathe at all. Oh well, I survived, still breathing! Two more weeks until my next appointment, and another appointment two weeks after that. No idea what each is for specifically, or what sort of timeline we’re looking at for what. But we are moving, so that’s something.

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…