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 💪🏻

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The only thing to fear is fear itself

Fear.

What is it?

A feeling that stops you from living the life you want. An easy way out. A safe way out. But never the choice you really want.

A limiting belief.

For the last 6 years, my beliefs have been pushed to their limits. My fight against fear has taught me invaluable lessons about myself and allowed me to start to really explore who I am.

As some of you may have read before, I suffer with anxiety. A lot. Some health related, some family related, some completely and utterly unrelated to anything. But it’s there. Always. Bubbling away until 3am when it hits me all at once.

But then to see your own child brushing off fear like it’s irrelevant, like a choice, it makes you reevaluate the meaning of the word.

Ellis faces fear head on, with a laid back attitude of ‘fuck with me if you dare, cancer’. He is determined and brave in ways I can’t fathom. I am in awe of him.

Whatever he gets thrown at him, he gets up, straightens his cap and carries on. Like a boss.

Maybe fear is less consuming when you have that attitude? Maybe we are all in control of our own feelings after all. Maybe we just have to believe that.

So it got me thinking. What if we are scared of the word. The feeling; Rather than the outcome.

One of the things I am scared of the most, is heights. Absolutely categorically can’t stand them. But why? I couldn’t tell you.

What if I used my fear for something good. What if I faced my worst fear, to help children like Ellis. Children who have no choice but to tackle their fear head on.

So on Sunday 13th September 2020 I will be doing a skydive to raise money for CLIC Sargent.

There are 3 important factors for me in this. The date, the month and the charity.

September is Childhood Cancer Awareness Month. To raise awareness about all of the signs and symptoms of childhood cancers. Ellis will also hopefully be completely free from all treatment by then.

Next is the exact date. 13th September.

13th September 2013 was the date I was officially diagnosed with Papillary Thyroid Cancer. 7 whole years ago.

As many of you know, if you’ve read my blogs before, I never got closure. I was never able to close that chapter of my life and move on. It hung over me for 7 years like a dark cloud, nudging me every so often to make sure I still knew it was there.

I started seeing a counsellor at the beginning of this year and she made me realise I needed this to be able to move on. We spoke a lot about my cancer taking everything away from me, from my career to friends and even my identity. I wanted to do something solid and real that cancer could not take. Like a big “fuck you”. I wanted to have something to allow myself a little cry, to allow myself to reflect on the last 7 years and to allow myself to put it all behind me.

You can’t get more real and monumental than jumping out of a plane at 10,000 feet 😳

The third part is the charity.

Within a few weeks of Ellis’ diagnosis, we were contacted by a charity called CLIC Sargent who support young people and families facing cancer. We were allocated a Support Worker called Becky, who quickly became our lifeline. In a new found world of fear, big medical words and appointments, she kept us grounded. No matter how silly the question (and I’ve asked a few of them 🤣) Becky has supported us 100%. A quick email or text to see how we’re getting on, visits in the hospital (pre Covid-19) and support with work, transport, mental health and wellbeing support. If we had to face it, she was there to support us. She still is. They also have a secure CLIC Sargent parents support group on Facebook, where I have met some amazing parents and children fighting their own battles. We have laughed together, cried together and felt supported.

This journey for me, would not be the same without the amazing work CLIC Sargent do.

They are a charity, so rely on donations and grants etc. But like many other charities at the moment all over the country. They are struggling financially.

They are facing a loss of 60% of their normal income.

I can’t imagine not having Becky and the CLIC Sargent team by my side during our journey and it’s horrible to think that if they lose more income, they might not be able to help others like us.

So there it is. A date, month, charity and reason.

I will face my biggest fear, knowing I can hopefully support them, like they’ve supported us.

If Children like Ellis can look fear straight in the face, then so can I.

I have set up a Justgiving account to raise much needed money for CLIC Sargent. If you would like to sponsor me, you can do so here.

 

xxxx

 

Admitted again 😢

Just when we were getting back into life at home, this happens. Within a few hours, Ellis’ temperature went from normal to 38 degrees. We have been advised to follow our normal protocol of visiting our local children’s ward if he ever has a fever during chemos, regardless of what is happening elsewhere in the country.

If I have learnt anything these past few months, it’s that things can change very very quickly. One minute you are standing on your doorstep, clapping and cheering for the amazing NHS staff and key workers, next you’re sitting in a hospital room eagerly awaiting blood results. But no matter how many times it happens, you are never prepared. You are never not scared.

Ellis absolutely hates coming into hospital now, which is totally understandable. He’s been in hospitals more than home over the past few months. So telling him each time that we need to go, breaks my heart. I hate seeing his face when I tell him. But I know he has to go.

It’s currently 12.20am and he’s just being hooked up to a syringe driver with antibiotics, while we wait for blood results to come back. The beeps of the machine are too familiar and go right through you. You hear them in your sleep.

I do however, feel like I know what I’m talking about now when the doctors ask me questions. As soon as I open my mouth to answer, fucking Holby City comes out. It’s weird. Nice because I understand what’s going on with his care and I can factually inform the team here about his current blood tests etc. Handy when you’ve been to 3 different hospitals with him in as many weeks.

One of the first things I look for when he is admitted to a ward, is the parents sleeping arrangement. UCLH give parents a foam fold out bed, which at first I found really uncomfortable, but since being to other hospitals it’s my favourite. At QEQM the parents get a chair which pulls out into a long chair. I can’t call it a bed because it doesn’t feel like one! It’s so short so my feet always hang off the end and it’s harder than the floor. You wake up (if you managed to sleep in the first place) hurting all over because it’s not even cushioned. Not good for someone like me with fibromyalgia, because I already know tomorrow will consist of a migraine and feeling like I’ve been beaten up.

Who knows what tomorrow will bring. Maybe we will be allowed home, maybe we will be in for 4 days like last time. We just have to wait and see.

I need a coffee and a cuddle. Not particularly in that order.

Cancer sucks. But when it’s your child, it sucks that little bit more.