Thank you 2022. At last, the future is exciting

So it’s been nearly 10 months since I last wrote a blog, which I think shows my life actually going OK!

Writing blogs used to be my escape. My therapy almost. My way of understanding cancer and the impact it was having on my little family.

It healed me.

Cheesy af but it’s true.

Dare I say it…. But life’s pretty bloody beautiful.

Ellis is in year 11 and just applied for sixth form next year to study an IB. The boy who didn’t know what the future held for him 3 years ago.

Beth’s tumour was benign, luckily. And although we’ve been battling since March for the correct care (well any care at all for that matter) she’s finally in a good place.

Lily’s a feisty female boss who will go far in life. She’s smashing her grades at school and settling back into being a normal teenager. Strops and all. She is the most empathetic and kind young woman. I am so proud.

Iris is Iris. She is scared of life. She has more phobias than I can count, a diagnosis of ASD helps us to understand her a little better, but it’s still tough to watch. She is carrying trauma from what happened to Ellis, but it cost me £250 and a private psychological report to find that out. I could have told everyone for free but 🤷🏼‍♀️ She fights demons everyday that you and I can never even try to understand, but she never lets it stop her. She’s determined and also fierce and I am so proud of her.

Then there is Matt. A new addition to my blogs. Not new to us though. He saved my little family when we were at our lowest. He is selfless, caring and brings a light into our lives that we now couldn’t live without. We all laugh more than we ever have and that’s down to him. We are very lucky.

Lastly, me.

I’m good. Like really good. I feel like I have my light back.

Work is amazing. I am lucky enough to go to work every single day with my best friends. We pick each other up when we are down, we moan together, laugh together and make a difference together. I couldn’t be more proud.

Way back at the beginning of this year, I attended The Bone Cancer Trust South Conference. I had never been to a conference and didn’t know what to expect, but I was still healing and growing from the trauma of 2020 that I thought it wouldn’t hurt, right?

From the second we walked into the room, I felt at ease. For the first time since Ellis’ diagnosis I felt understood and like I belonged. It was surreal. A whole room of people of cared and were saying things that I thought only I felt. It was powerful.

One brave young girl got up and shared her story about life after cancer and I just cried. She was brave, determined and confident. She told her story with pride and she smiled the whole way through. Cancer took her leg, but she was living her life to its fullest, never grumbling.

After the conference finished, we went to our room and just sat. Taking it all in, processing what had happened and taking a moment to be silent. It was moving.

I emailed the team at Bone Cancer Trust there and then and asked if I could be a guest speaker at the next one at the end of the year as I knew I just had to tell my story. I wanted other people to feel how I felt that day. I wanted other Mum’s to listen to my account of what happened and think ‘that’s me’. I wanted to stop families feeling alone and spread the feeling of unity that I had now found.

Every September I do something raise money and awareness for cancer. For 2 years in a row I had marked the occasion by jumping out of a plane and doing a 25km trek. So this year, with Matt for company, we completed another 25km trek through the Chiltern hills. It was way harder than I imagined, but we did it and raised £300 this time for The Bone Cancer Trust. In January we are walking another trek… this time marathon length….!

Then October came and so did the conference. I was the most nervous I had ever been. I would have much preferred to jump out of a plane again! But I knew I had to do it, to tell my side.

And I did.

I got up there, told ‘A Mum’s Story’ and didn’t cry. I did look up at one point and saw 400 eyes looking at me…. So I quickly looked back down again and carried on.

I had so many lovely people- mainly parents- come up to me afterwards to say how much they resonated with every word I said. One man said it was like he wrote it word for word. It was humbling.

While enjoying (downing) a well earned glass of wine, a man tapped me on the shoulder, gave me his business card and asked me to email him. I still couldn’t quite talk so I think I just mumbled something at him. Great impression!

Turns out that the man is Head of Trustees at a huge charity called Children With Cancer UK. They had just pledged a million pounds to BCRT which was amazing, but I was unsure as to why he wanted to hear from little old me.

I emailed later that evening (after lots more well earned wine) and introduced myself. He replied the next morning and said he is excited to listen to my ideas as they want to change the way things are for siblings and families of those affected by childhood cancer.

Easy, I thought. Something I am hugely passionate about and I am determined to make the right noises in the right places to get it.

Fast forward a few weeks and I had an email inviting me and 8 friends to the annual Children With Cancer UK ball in Park Lane, London…..A huge deal!! Champagne, ball gowns, celebrities….!!!! Of course the answer was yes! I invited people who are in my life that are also affected by childhood cancer. I wanted them to feel how I was feeling- after all, we are all in the same broken, sinking boat. If anyone was deserving of it, it was them. I also invited a Professor of Bone and Cancer Biology from The Bone Cancer Trust, who has done so much for my family. She is now a good friend of both of ours ❤️

The ball was absolutely surreal. I still can’t put it into words just how amazing it was. there people, the food, the champagne (we had lots of champagne!!!) I feel for the first time in nearly 3 years, lucky.

Maybe things were changing.

Maybe things were becoming positive BECAUSE of the cancer, not despite it. Food for thought. I was were I was meant to be.

I had the pleasure of catching up with Gaby Roslin, who has actually become a friend. I met the guy who I emailed me and his beautiful wife, I followed Patrick Truman up the stairs, got bumped into by Tony Hadley and had Lulu sing directly in our faces…! It still feels like a bizarre dream.

Fast forward again to December and I have an email from Jo Elvin, who is the new CEO for Children With Cancer UK. The very same Jo Elvin who was editor for Sugar magazine when I was growing up, Glamour magazine and Mail on Sunday amongst others.

Who do I actually think I am?! Little old me. The moany, sweary Mum from a seaside town in Kent is being asked to speak to these people about my ideas?! Argh!

Then in December while on the way to a Stanmore appointment with Ellis to lengthen his leg again, because that boy still hasn’t stopped growing, the email guy (his name is David by the way- much better than the Emil guy!) text me to say another man from Children With Cancer UK is really interested in meeting with me and can I give him a call.

So, in January (next week) I have two separate meetings one with Amar and one with Jo Elvin. To talk though my ideas and explain, first hand, the negative impact childhood cancer has had on my children.

My ideas are simple.

From funding for therapies, information packs for schools to childhood cancer being portrayed in soaps to raise awareness….it’s all in my plans and I won’t stop until I make a change. I will continue to talk, to share and to normalise the things we have all been feeling for the last 3 years.

I have started my second book and almost finished…!

So for the first time in 3 years, I am going into the new year excited and positive.

New Year’s Eve 2019- Ellis was just diagnosed and chemo was to start in less than a week. I was terrified of what 2020 had in store for my little family.

New Years Eve 2020- My marriage had just ended. Ellis was only just into remission and I wouldn’t dare let myself think things might be OK.

New Years Eve 2021- Beth was being referred to UCLH (same hospital as Ellis) for a tumour in her thyroid. With so much uncertainty- it felt like Groundhog Day. January would be just about fighting for my children again.

Now, New Years Eve 2022 is exciting. It’s not overshadowed. It’s not left me feeling that oh too familiar feeling of dread.

I don’t have to fight.

This time, I am choosing to. For other people’s children.

I will make a difference. I’ll make it so that no siblings have to go through what my children did with no support.

2023, I am so ready for you 💪🏻

Advertisement

Not all disabilities are visible…

This is a topic that is hugely on my mind at the moment.

We, as a family, are learning to accept the fact that Ellis is now disabled for the rest of his life.

Despite beating the cancer, the heart failure and the Covid, this is the one we are left with.

To look at, he looks ‘normal’. His hair is back, his teenage attitude is back 😜 but his bones are not.

He is bionic.

I am now a Mum of a child with a disability.

We have never had the time to properly digest it until recently.

We have the blue badge, the DLA, the risk assessments and the hopeful EHCP (fingers crossed) , but we’ve still never seen it.

While we all want Ellis to have his life back, we are coming to terms with the fact that it’s not the same as it was.

He will need extra support his whole life, not just as a child.

His leg length discrepancy is much more noticeable now, with his limp being more prominent. He has to prepare his leg a few minutes before standing each time, because it goes stiff and he can’t move it.

We are always conscious of hills when we go for walks or unsteady ground or where the next bench is.

His friends have been incredible, allowing him to slot right back into their group like nothings happened and I genuinely can’t thank them enough. This has been everything to us since going back to school ❤️

But we need to now start planning going forward for having a child with a life long disability.

A simple holiday takes so much planning.

From travel insurance, to disability friendly hotels. Days out ruling out things he used to love and the constantly having to explain to people that no, he can’t do trampolining or go ape. Actually, there are lots that he can’t do and that’s forever.

Worrying about what could go wrong and carrying out virtual risk assessments in your head every single time we go out.

It’s exhausting.

But not as exhausting as denying anything is wrong and picking up the pieces when it all falls apart.

So we are learning.

Ellis is learning.

And I continue to be in awe of him every single day ❤️❤️❤️

Xxx

My time to give something back.

So this week I have been a bit quiet in the world of social media. I’m still alive, I’m not in an alcohol induced coma, don’t worry. I’ve been a real life grown up this week.

I have been concentrating and working hard on something that means a lot to me.

When Ellis was discharged from intensive care at Great Ormond Street and back to our local hospital, we were picked up by two lovely men from St John Ambulance, because Covid-19 meant that the NHS has been stretched to its limit. The two men were amazing. They put us both at ease, one was even commenting on how cool Ellis’ scar is and making him laugh. They were genuinely nice people.

These men were volunteers. They did what they did because they wanted to. That blew me away.

In a worldwide pandemic, where most peoples first thought is to run and hide, these men had voluntarily put themselves on the front line.

Amazing.

It made me think about how unique my situation was. I had been in hospitals during the whole pandemic, I know the ins and outs of the hospitals Covid-19 procedures and I’ve lived and breathed a Covid-19 positive environment.

Just like Cancer, Covid-19 doesn’t scare me.

I could help.

With that along with my vastly growing skill set of mental health nursing and counselling I genuinely think it would be something I could use to give back.

So last month I signed up to enquire about volunteering for them.

And today, after a month of interviews, inductions and training courses I’ve done it. I have qualified as a SJA First Aider ❤️

Without Covid-19 I would be getting ready to go to events to provide first aid with an amazing team, but they have all stopped. SJA volunteers are being called on in hospitals, care homes, blood donation facilities…. anywhere help is needed. This is where I will be going.

I have had the most surreal time getting to this point. I have made some amazing new friends who have kept me sane during some surreal moments 😂 and reassured me on days like today where I have been terrified of failing.

I have ordered my uniform, ready for me to get stuck in.

2020 hasn’t all been shit.

It’s been the year where I lost everything, but gained so much more.

A year where possibly, I might have got a bit carried away with filling up my spare time…. working full time, completing my counselling course and now being a SJA First Aider.

But hey, it wouldn’t be my life if it wasn’t a tad bit excessive and out of the ordinary 😂

I’m happy. Happier than I’ve been in 9 long months. I’ve used the dark days and turned them into something amazing.

I am proud of myself and I’m not ashamed to say it.

Xxx

I didn’t choose this year but I choose how to react to it.

“You’ve changed”

Something I have been told lately by someone close to me.

Well of course I have, wouldn’t anyone?

Having faced my worst fears as a parent head on and still coming out the other side is pretty life changing. From that dark day in December when Ellis was first diagnosed to now- nearly at the end of his treatment has provided me with a huge shift in mentality.

Seeing what I have seen, witnessing my boy so close to death right in front of my nose will have a lasting impact forever. The way I process it is, if the worst had happened, if he had died that day in PICU, right at that moment I couldn’t have been anymore scared. I had reached my limit.

This was my 10 moment. The top of my scale.

When you have a life changing illness or condition, you get used to rating your fears and pain on the scale of 1-10. For questionnaires, for yourself, for doctors. Even in my darkest days of my treatment, I never gave a score of higher than a 9. The day I scored 9, was the day I heard the word “You have cancer”. I didn’t give it that score because I was scared for me, I gave it that score because I was scared for my babies. I was terrified I would die and they would grow up without me. I wasn’t done teaching them about the world, shaping them into resilient little people or telling them I loved them. I wasn’t ready. All that pain and I still only scored it a 9.

I was saving my 10, hoping I would never have to use it. But that day, I did. I didn’t realise until that day just how different 10 was from 9. It was a million miles away.

So from here, it has to get better. I have faced my 10 and I am still here. I am still me, just with a different outlook on life. I am a work in progress, evolving and learning. And I love it.

It has got me thinking about blame and responsibility. Two very different things, but too often treated the same.

The blame for this year lied with Ellis’ cancer. But it is not the cancer’s responsibility to determine how I react to it and how I move forward. That responsibility lies with me.

For the past month or so I have been putting lots of effort into making sure I am mentally balanced. I have been re reading an old favourite book of mine called ‘The Subtle Art of Not Giving a F**k’ It was recommended to me a few years ago from an amazing friend who always has my back. 2-3am when I cant sleep, I know I can always talk to him. We studied Mental Health together 7 years ago, so he knew me just before my own diagnosis. There are not many people who I can truly say are my friend for life, but he is. And I am eternally grateful to him for being a friend and for understanding me on a level not many people do.

In the book, the author, Mark Manson, talk a lot about how life is easier when you actually learn not to give a f**k. It’s so true. Not necessarily about peoples opinion of you, but how you view the world, why you do what you do and generally makes you question yourself. I love that. With me, it has taught me that I am in control of my life, the situation isn’t. Things happen, sometimes good, sometimes bad, but ultimately I am in charge of how I chose to feel.

And this year, I choose happy. Despite everything that has happened, despite the fears of what still may happen, I still chose happy.

Does this mean I don’t care? No.

Does this mean I’m not scared? Absolutely not. I still have days where I cry because I am scared or days I can’t eat. It is still very real and current for me.

I am just not letting that define my life. They are parts of my life that unfortunately now will always be there. Every new pain, every new lump and bump with me, Ellis or any of the kids will always be a challenge for me, but I recognise that and accept it for what it is. What is isn’t is something that stops me from achieving my goals, from reaching for the stars and from fulfilling my dreams.

Life the way I see it, is like a game of poker.

You can be dealt the worst hand in the game, but still go on to win. You can beat the best of hands purely based on your attitude, your choice and how much you are willing to risk.

It’s how you play the game. That’s the secret.

I can’t change what has happened this year, I can only learn from it. Out of something so horrendously difficult, I have gained a whole plethora of influential experiences, which I am using for personal growth.

So, yes. I have changed.

I am choosing to be happy.

I am choosing to write my own story.

Xxx

Give yourself the same care and attention as you give to others and watch yourself bloom

Self love.

Why do people shy away from it?

Why are some of the nastiest words we hear from ourselves?

Self love is not about thinking you are better than anyone. It’s not even about thinking you are stunningly gorgeous. It’s accepting yourself for who you are.

My body is far from perfect and its taken me a long time to accept that actually, that’s ok. I have stretch marks, imperfections, a scar across my neck and definitely more chafe than thigh gap…(Because… cake)

But what this means is that it has carried 4 incredibly amazing children, it’s beaten cancer and survived some really dark times.

And I finally love it.

It makes me so sad to see people who are not happy in their own skin, people who avoid doing things they love because of they way they feel about themselves. People who are insecure about the very body that keeps them alive.

One small nasty comment years ago that has shaped your view of yourself or stuck in a relationship where it has become the norm to be put down and not appreciated. Hang ups you have about parts of your body you hate, because someone irrelevant once told you so out of spite. Parts of your body you wish her smaller, bigger, more toned, less toned……

It’s not about looking in the mirror and telling ourselves we are perfect. It’s about knowing that it doesn’t even matter that we are not. No one is. Ok well apart from Phillip Schofield, but I mean he is god.

Perfect is manufactured from magazines and media. Naturally beautiful girls being photoshopped within an inch of their lives to become more appealing to this weird ideal that everyone so badly craves. Everyone is worth more than that.

I am lucky enough to know some of the most kindest people, who will pour kindness into others, but will be hard on themselves.

If this is you, stop. Turn your kind words back onto yourself and listen to them.

The things you love about your partner, or the things you find endearing in the person you like- you have these qualities in you, too. The things you wish you were, you already are them and more.

Why is life somehow ruled by the size of someone’s arms or the length of their legs?

Life is about fun, adventure, meeting new people and connecting in ways you never dreamed possible. It’s about laughing so hard until your cheeks hurt. It’s about those moments that take your breath away and also the hard moments that make you who you are.

Life is like a book.

Our past is our story and our bodies are the illustrations.

Don’t judge your own book by it’s cover.

Xxx