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.
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 💪🏻