The Lucy Effect

Through the whole cancer thing, we cling to the idea of options. As long as there are options, it’ll be fine. Things don’t necessarily go according to plan, which is something that is terrifying at the time because no one explains to you at the beginning that it’s common, and usually that’s fine, there are other options to try. You do tend to forget the true seriousness of this cancer malarky sometimes. Especially when you know so many people with it who look so ‘well’. And I talk a lot about how people are successfully living with cancer these days, or being treated, cured, and you start to forget just how serious it is. Then you get a harsh reminder.

I know so many people now with cancer. There was a point back around this time last year when a good friend of mine died (you might remember Amy?) and I sat myself down and said ‘ok, this is going to keep happening. Although everyone you know will eventually die, you are putting yourself in the line for making friends with people who are more likely to die sooner than others. Is this what you want to do?’ And I did think about it, I really did. Was it time to step away from the cancer community and my friends? It can be hard trying to get through this cancer thing yourself, let alone also losing friends along the way from the same (well, overall same, though there’s nothing same about all the different types of cancer) disease. It’s weird to think you are entering into relationships with people sometimes even knowing that they won’t be around much longer.

But the answer I gave myself was yes, a resounding yes, my life is so much richer for having these people in it, that’s all there is to it.

Today the world has lost another bright light. And so bright it was. I’ve been friends with Lucy for a while, but our friendship really started around October 2018 when she got a WhatsApp group together of a whole lot of ‘badass babes’ who were in different stages of different cancers. We have become each other’s family, in contact almost every day since then, talking through absolutely everything we’ve been going through, finding solace in knowing we’re not alone.

I think about Lucy back in October, when she brought this group of girls together, I don’t think any of us would have believed that we would now be outliving her, that our biggest test as a group would be helping each other through her death. At the time she brought us together I think she was out the other side, the cancer gone. Little did we know we would go through that yet another time with her, and that now we would be here, shocked at the fact that she is not. We were there with her when she got good news and bad news, I remember her sitting in the car when she told us one of the bad bits, feeling like I was right there with her. In  my memories, I was. Each stage, as she found out that the treatments were working, or when she found out they weren’t, we were there, trying to comfort her, trying to remind her that options are good. But I suppose we all eventually come to a time in life where there are no more options.

Up until I met Lucy, I had learnt from other people with cancer that saying ‘I am so sorry’ as a response to their bad news was the best way to go. Lucy taught me to never use those words to her. I remember one blog post, when she got the latest of bad news at the time, she said ‘Once again, keep your ‘I’m sorry’s and your ’sympathies’ to yourself; they don’t help anything, especially not me!’
To everyone who has heard me ramble on about language before, here is such a prime example of how you just need to listen to someone in order to work out the right language to use for them. Don’t just say whatever you want to without a thought for what they might want or need to hear.

I think there was a time in my life where, like most people afraid to talk about or properly acknowledge death, I maybe would have spoken about her in the present tense, like she’s still here, like she never truly left. I know that isn’t the case, I know she’s gone. But also, in a way, she will never entirely be gone. In the wise words of philosophers Banksy and Macklemore – they say you die twice, once when they bury you in the grave, and the other time the last time someone mentions your name.

Thanks to Lucy, I have now taken up knitting. I now drink oat milk. She got us all into playing the Sims at some point. A lot of us have matching backpacks to her. She got me onto Jody Picoult, her favourite author. I am happy to know I have all of her books now to read, holding Lucy in my heart with every word. Lucy was very… persuasive without particularly trying to be. Maybe persuasive isn’t the word. She inspired us to do the things she did by the way she spoke about them.

I’m finding it hard to get the words to describe her, to talk about her. I find it hard in these situations when words fail me, because there are not words enough to describe Lucy or the effect she had on us. Or to fix this.

This also goes to show that even if you’re prepared for it, it comes as a shock. We knew things weren’t going well, we knew she was at the end of treatment and speaking ‘hospice’. We all knew in the back of our minds that it could mean the end was near, but none of us really believed it. Even Lucy herself said ‘I don’t know if I will come home but if I don’t I don’t I’ll be in the right place’. The hope that it would only be temporary ever present. I wonder if she said that for herself or for us. Did she believe it? Did we? Did we keep fooling ourselves up to the last minute that it wasn’t as serious as it was? Is that a bad thing if we did? I can’t imagine what it must be like to be at that stage. But even then she was looking forward to Hospice care to take the stress off her mum to actively look after her.

I have an audio clip saved on my phone of her singing ’The Reaper’ by Sia –
You came to take me away
So close I was to heaven’s gates
But no baby, no baby, not today
Oh, you tried to track me down
You followed me like the darkest cloud
But no baby, no baby, not today

I even got a mug made with the lyrics on it and sent it to her. A reminder, no Reaper, not today. When she told us a few days ago that she was out of options, I told her I was not going to start talking about her as it it were the end, I wouldn’t yet start going on about her ‘legacy’ just because she had bad news, I wasn’t going to talk about her like she was dead yet. I told her that I would write all those things down and send them to her (though when I did, it wouldn’t necessarily signify that the Reaper was imminently nigh). I sit writing this looking at that letter on the table next to me, in an envelope, addressed, ready to be sent along with a book I know she loved.

I’m sure she knew we loved her, but sitting next to me now are all the things I hadn’t said that I wanted to. Maybe I had said them all at some point along the way… It’s hard to find the balance between saying these things too early, or too late. I don’t think any of us thought that we would already be at the ’too late’ stage by now.

No I’m not crying, YOU’RE CRYING shhhhhhh!

Friends, if I can urge you to do one thing right now, it is to tell your loved ones that you love them, why you love them, and how much you love them. I know it’s cliché to say that, but write to the ones you love the most all the things you would say to them if they were no longer here – it seems we are better at sharing our feelings in hindsight – and show them, tell them, even mail it to them! If your loved ones are gone, do the same anyway.

It’s funny sitting here now, I realise how much she has leaked her way into my life in her own kind of way – not pushy, not loud, very unassumingly, but in a big, strong way. She planted so many seeds in my head that grew into beautiful, fractal trees. I say fractal trees to more embody who she was. Aside from being an amazing human, she was also a scientist. A conservationist. She cared about the environment – a girl after my own heart! She studied Conservation with birds, me with ants. In fact at one point back in February she was telling me that she was looking at PhD projects. The dreams of those who never get to fulfil them. I hope this can be a lesson to you all: never stop having dreams. There is hope in dreams, and where there is hope there is life, for however long you are blessed with it.

Every time I see a photo of her it feels like someone has stabbed me in the heart. I feel like I’ve been winded. So I put it to good use and wrote a song about/for her. Now to be able to play it through to the end without crying.

I can write this post, filled with love and an outpouring of gratitude, and just get back on with my life. As I said, she will always be with me, but I don’t have to deal with the daily reminder of her not being around quite like her family have to. Nothing can prepare you for losing a daughter, a sister, and my love goes out to her family. Their lives will eventually go on too, but the hole in their lives will feel insurmountable.

I love you Lucy. We love you. I still haven’t accepted this, I don’t know how you are supposed to go about processing this, but I feel you in my broken heart, and I hear you in all my thoughts. You were one of the good ones.

The joy of ongoing appointments

I was talking to someone the other day who was saying that going back to the Macmillan Cancer Centre for appointments is something she fears and finds upsetting. And I get it, there can be a certain sense of PTSD with these things, and constant reminders of the trauma isn’t necessarily what you want.

But my views could not be more different.

I remember the first time I walked into that building. Hanging from the ceiling in the foyer is a colourful art display of things picked up on beaches across the UK. From toy spades to flip flops to plastic straws to plastic crates and any other number of things. You could sit for hours gazing up at all the things hanging there, and collectively, I have.

I remember the first time I met all the smiling people who told me they would look after me. The oncologists who said they knew how to treat me. I remember the joy I felt at being in safe hands.

I remember going back every treatment week to catch up with everyone and start another session to cure me. All the people who were working together to give me the best chance at living. The laughs I had with my pharmacist, the smiles from Ambulatory care when I showed up for my chemo. We would debrief on our weekends.

I remember finishing chemo and being transferred over to my surgical team. The same building, but clinic was over the other side. You would think it would mirror the oncology clinic since it was the same floor but it didn’t. It was similar but not the same. But the pattern on the floor was the same – a colourful mosaic designed by the man who designed the Sgt Pepper Album cover. Can you imagine?

Even after surgery I didn’t feel on my own, despite being cast out into the big wide world – I had appointments to come back and see everyone. They still cared, they were still looking after me.

These days I get to come back for Oncology clinic every two months, and a chest xray to check it hasn’t spread to my lungs. I know some people would use that as an opportunity for anxiety that their cancer has come back and they will therefore soon die. I approach these appointments with excitement. I’m so glad and grateful that they keep monitoring me so closely and I quite enjoy getting told every couple of months that everything is ok. And if there is a day when it isn’t, well I couldn’t be more happy that they had kept checking.

The Macmillan Cancer Centre is also where I have access to my psychologist, as well as complimentary therapy (e.g. Massage and reiki *eye roll*). It’s where I can pop in to the ‘Living Room’ to make a cup of tea and probably make some new friends if I feel like it. It’s where I could attend support groups if I needed them.

This is the place that has taken me in, looked after me and hopefully saved my life. That keeps providing love and support, even now. That has somewhat been my second home over the past 18 months. That is filled with people who care about me and my well-being. What an amazing place to have! Why would I fear going back? Why would I get anxious each time they show they are still looking out for me? Why would I be angry at the smiling faces of people who’s job is to help me?

Every time I go back I am reminded of how lucky I am and I smile. I smile for all the good I have experienced over the 18 months, thanks to this very place.

‘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.

Happy 70th birthday NHS

It is the 70th birthday of the NHS.

Where to start? I suppose with something that’s obviously close to me.

Looking at cancer alone – 50% of people get cancer. That means you, and your mum. Or your partner and your dad. Or your sister and your best friend. I know of people in the US who couldn’t afford treatment, or who have gone into hundreds of thousands of dollars of debt. I wouldn’t be able to afford that, would you? Even in Australia, when my father got an MRI checking his prostate cancer, he had to pay $600/go and that’s on top of private health care.

Even just looking at MRIs… I have to have one every 2 months. No way could I afford like £400 2 months, and that’s just for maintenance scans! Who even knows how much everything else would (have) cost.

Thanks to the NHS, I’m not forced to go into ridiculous amounts of debt just to have a chance of staying alive. The beauty of us all paying that bit of tax to the NHS means that anyone can get the treatment they need regardless of whether they manage to have a job that gives them lots of money. Their fate will not be sealed by their pay check. And it’s there for when the rest of you need it.

And I haven’t had to settle for a sub-par surgeon or someone who isn’t a specialist in my area, I’ve been able to get the surgeon I need, in fact one of the best.

When I was diagnosed, some people asked me if I would move back to Australia for treatment. This confused me a lot. Why would I decide to leave my life and the country I want to live in just because I have cancer? There’s no need to necessarily give up on life just because you have cancer (not for me anyway, I know everyone’s cancer is different)! What a depressing thought that I would suddenly quit everything of the life I have built and want to live.

But that aside, why would I want to go back to a country where you’re not looked after? Where you have to fend for yourself and if you’re not rich you must go into a lot of debt to have a chance of life? I say this with not a lot of knowledge how it would be to have my cancer in Australia, maybe you can get some funding to help and maybe Medicare can help with some. But going off my dad’s experience, it is no NHS.

And the people who work for the NHS… they are the most heroic people. The doctors and surgeons are making miracles happen, the physios, anaesthetists, radiographers, therapists (ok, I’m not going to go on naming all the types of professions in the NHS, if you’re one, you are the best) are irreplaceable, the nurses are absolute angels, even the people cleaning my room when I was in hospital brought me so much joy.

Sure I’ve had moments where things haven’t been great. I’ve had blood work lost, I’ve waited in a room in A&E until 3am waiting for a bed in a ward whilst in the absolute worst of my neutropenia and illness during chemo (but they did manage to find me a private room eventually), I’ve had dentists ignore my cancer (though to be fair they were NHS but made me go on private to get an appointment quickly), I’ve had doctors forget to come around and discharge me from hospital, I’ve had doctors in hospital causing me unnecessary pain and discomfort when they thought they were doing the right thing but didn’t take a moment to think… but it takes time to go through my memory to find bad moments, and they are only a small handful of thousands of fantastic ones.

I feel like people who complain about the NHS are those who haven’t needed it yet. Or even if not, I know there can be bad experiences in anything. But the amount of people I know who the NHS has saved…

The NHS makes me proud to be British. Growing up in Australia, I never felt Australian, I knew I was British. And from the first time I stepped off that plane in London 3 years ago, I knew I was home. I don’t feel like I could ever leave. There are many things that make me proud to be British, and a few things that don’t, but above everything is the NHS. This is something so important, special, necessary to our lives here. It underpins everything, looks after us, and it’s something we’ve helped create. What a fantastic thing. I know it struggles, I know more needs to he done to help it out, I have no suggestions of how to help it, I wish someone did. But I do know we need to protect it, to keep it alive.

Happy birthday NHS. I think everyone who has ever worked for the NHS in any capacity can really take this as their own personal celebration too. From the people who used to drive blood donations around from the donor to the receiver whenever needed before refrigeration existed, to the clinical trials which ended up saving lives, to the doctors working long shifts to make sure everyone gets seen and we all live.

We thank you all. So many of us are here because of what you’ve done over the years.

Happy birthday. Have a champagne, NHS, you deserve it. But don’t let your hair down too much, because we need you, every second of every day.

Unfortunately… No going home today.

Most importantly, I can’t thank you all enough for your finger crossing, crossing of various limbs, thoughts, hopes, well wishes.

Unfortunately cancer/chemo wins this round and I can’t get home for our planned Christmas lunch /day of cheer tomorrow.

I was feeling a bit down about it. But we’ll go to the pub for lunch instead, I’m getting ma to bring in my Christmas dress, and hopefully I can go home tomorrow eve.

I’ll take mum and dad to the Christmas markets on Sunday too so that will be nice.

Chemo isn’t being held up on my account next week but due to the public holidays I don’t start again until Wednesday. So I will get an extra day with my parents before they leave, which is pretty great. I’ll be stuck in over the following weekend, definitely Saturday, hopefully not NYE, but hey… It’s not like I can really go out partying anyway! So I guess no great loss.

So… It’s not what I was hoping for, but it will be nice.

And we always make the most of what we’ve got!!!

And really, I’ve got a lot.

I’ll try to check back in over the weekend but in case I don’t, Merry Christmas everyone. You are all amazing and I can’t thank you enough for your love and support. You make me so happy! You give me life! Give all your loved ones a hug. A big hug.

I’ll leave you with a photo of one of the Christmas Trees in the Cotton Rooms:

A post of gratitude.

You know what has been amazing? My friends and family, and really anyone who I have come in contact with.
The support I have received through this all is overwhelming.

I find it difficult to have things done for me, to accept help. I’ve always been staunchly independent. But the offers to help from all different directions, should I need it, have been so lovely, and have meant so much.

And of course not just offers, anyone who has done anything for me when I have needed it, I am eternally grateful.

On top of that, the packages and presents and cards and flowers I have received have been amazing. Seriously.

To anyone who has sent or given me anything, in general or for my birthday, to anyone who has offered any help, or any support, I wish I could find words to thank you all, and I wish I could list you all by name, but we would be here forever. You all know who you are, and I would be lost without you all.

Also to anyone who has given a blog post a comment, or a Facebook or Instagram post a comment or a like… To all the lovely words you have saved for me – Every one of those means so much.

Even to people I don’t know who have reached out with a message or followed the blog, this is special too.

You never want to be in this situation, but I find myself feeling so lucky on a daily basis for all of you wonderful people.

My parents are currently here too, visiting from Australia for a month, and we have been having so much fun now that I am no longer dying in hospital. Even if it involves sitting around for transfusions or playing Scrabble in the Cotton Rooms. It’s been amazing, and I am so grateful to them for being here.

I am surrounded by love and support from so many people, and I can’t thank you all enough for every little thing. And big thing of course! You are helping me get through this, each and every one of you!

So thank you. Eternally. I’ll never forget how amazing you have all been through my hardest struggles.

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