Navigating Neuroblastoma as a Adult Survivour

My journey with Neuroblastoma has not been one that has ever filled me with much joy. It feels like a heavy duffel bag, slung on my back most days. Monotonous and mostly just never feeling much change. Day in and day out, like a luggage carousel waiting to depart the next horrible bag on me.

However I was recently privileged to be invited to speak at the Neuroblastoma Parent Symposium 2025, which was run by Solving Kids Cancer, on a panel with other Neuroblastoma survivours.

To say I was nervous and apprehensive was an understatement. Public speaking has never really cropped up much in my life, and if it did it was short and brief. Nothing like an hour long session talking to a wide audience and to the world online to get the nerves going. However, that last one seems contradictory since I have had a YouTube channel for just shy of a decade but I digress.

I have known the charity for ten years now, and being in the public eye/poster child for awareness of Neuroblastoma since I was a child, so the impact of this event was not lost on me at all. The conference occurred over a whole weekend and I thought I would jot down my thoughts and feelings into a diary format. Because if I have no structure this blog post could exceed the limit of necessary words and writing, and my brain cells are already partially drained and no one should have to read that.

Friday 7th March

On Friday I arrived at my hotel room with a slight realisation of "Dear lord this is real now.". I had my own room, which I felt very enthusiastic about and came with a beautiful view of a tree which was an active gym for the local bird population. Which had already been a great viewing spot, with my cup of tea, to see a blue tit and a red kite, the latter we don't get in Kent so I was very excited.

Unpacking made this whole event feel even more real, as I had pushed it mostly to the back of my mind for weeks now. Every corner of the room I had filled with parts of my life for even just a few days. The bathroom was practically a bomb site of toiletries, wardrobe stacked with way more clothes than I actually needed and my medication pile was staring daggers at me. There is something about change, whatever the impact, that always feels significant. Significance is something of a tool and which in my case was about to make me freak out.

Change for me has more often than not been a scary and unfortunate occurrence. If it ever had good news, it was washed away with catastrophic days/weeks later.

Quite simply, my head was a mess.

The grounds we were staying on was something of an opportunity, a breath of fresh air to clear my mind. Which it did, I explored the views and found a little church nestled away with the most amazing decor. I am by no means a religious person, but I always find solace and comfort in well decorated churches or cathedrals.

Pictured is a section of the church mentioned. In front of the camera is a row of pews and an arched doorway with two angels depicted one on each side. They both have one wing lifted to reach the top of the arch. At the very top of the arch is a holy cross which is white. The background is a shimmery gold colour. Through the arch is a domed room with three stained glass windows depicting scenes from the bible. In the centre is an altar with a purple cross.

There was something about just listening to the sound of silence, and watching the light cascade into the room which stayed with me throughout the rest of my walk. Watching the sunset over the rolling hills of the countryside, hearing blackbirds and robins shouting and talking to a family I have known for a very long time.

By the time I got to the hotel I was doing better, I got a lanyard and started what felt like a train of hugs. One by one people I had known for years were hugging me and praising me, which was not lost on me. I spoke about life, my chickens and ended up relaxing more than I thought I would.

I then started meeting not only new people (which if you don't know is like one of the hardest things to do for me) but two neuroblastoma survivours I was doing the panel with, and talking really openly. It is so strange and interesting how an entire community of strangers can get together in one place and instantly breathe a sigh of relief. Seeing everyone just relax and enjoy themselves as if the circumstances we had all experienced, just vanished. It makes you grateful for normality, in the doses it comes in.

Dinner came and went, and honestly I loved and loathed myself at the same time. When a platter of delicious food is laid out like a royal buffet, and you have a gastrointenstinal delay it really puts the cherry on the cake of disappointment. But it was incredible and everyone agreed that it was enough to make us want to have more, and more and more.

Towards the end of the night, I decided to be more social than I think I have ever been in my life and go to a social drinks event. Before I go any further alcohol and my body doesn't mix, for some reason on the list of joy my life could have had that is the one thing permanently off it. Even though I get a great nights sleep better than any melatonin will give me, my autonomic nervous system thinks one tiny drop is five cans of an energy drink. I get the shakes and overall not a pleasant experience. However, when I saw a bowl of ice cold J2O's I could have cried with joy, I finally embraced my adult socialite dreams of looking cool while remaining completely sober.

I must have stayed there talking for over an hour and the discussions I had were so candid it honestly felt like I had known these people for years, and not minutes. Things in common were discussed and it just gave me the confidence not to shelter a huge part of myself away. Being openly disabled for most of my life, meant a lot of people seemed to avoid me like the plague, or asked inappropriate questions.

So having a place where we could laugh about things in our lives, talk about education experiences and be ourselves was peaceful.

Saturday 7th March

After a later-night than I thought was possible for me (I am a grandma at heart; I like to be in bed with a book by at least 10 pm) and a mere two hours of sleep I finally came to the realisation I had to get up, or I would drive myself insane. No amount of artwork or watching TikTok was going to fix that. I don't think my alarm set to Red Wine Supernova By Chappell Roan helped that at all, given I nearly fell back asleep.

After a busy breakfast, which again was not lacking in options, more conversations came and went. Whilst other people ate, I chugged my 10 tablets like tic-tacs with a very strongly caffeinated tea. Whether that is a good idea is still up for judgement but going by my increased heart rate, I do not think I can blame my Ivabradine. Which ironically is supposed to reduce the high heart rate I normally get....

I spent most of the morning in and out of places, before watching a seminar presented by the doctor who I referred to as my second dad when I was on treatment as a child. Since he was the one who guided my family through my treatment and even put me on one of the first trials for a widely used drug called Cis Retinoic Acid. Which is very commonly used now in skincare, so that is why I say I am ageless and my skin refuses wrinkles. The more you know.

It was very melancholic to watch the same man who saved my life all those years ago, still being part of the research that saves kids today. You can tell just by listening to him how much his research means and how passionate he is about it still. Coincidentally I did meet him later on and I am still shocked he still recognises me given how much I have changed over the years.

After a while there was a tea break, which just goes to show you how British we all were, and it was decided that we'd spend some time in the sun. I do not remember the weather being so warm for March apart from the COVID Lockdowns. But having the sun beaming down on the newly fresh flowers, and eating lemon drizzle cake with tea felt like I was on holiday in the August heat.

The day progressed and I met all of the other survivours who were going to be involved in our panel. Again the conversations flowed so naturally it was like we had known each other our whole lives. I have to admit I was taken by one of the survivours' guide dog, who with permission, I was allowed to interact with when she was off duty. Plus she was the biggest star of the seminar that day. I cannot even lie, she stole my heart and absolutely loved laying on our group project.

The evening rolled around and after a heavy day of being on my feet I was done. I was feeling the pain and the swelling and knew if I didn't rest before the even I would not make it to the evening meal. So my legs remained highly elevated on my bed, and my body being doused in ibuprofen gel and a tea was in my hand. I was going to be okay plus I was watching the rugby so at least I could empathise with very muscular men getting pelted and shocked to pieces. However the reason behind the two is vastly different.

When the time came, we got ready for a nice evening meal where I had put on my first smart suit trousers and shirt in years. All for an entirely different reason this time, than the last event I wore it to. We found a table and spent the whole night with another family who were amazing to talk to. Dinner was served and discussions continued, we all laughed and the mum said to us "Happy international women's day" and hugged us.

That moment for me stuck out, because it was really needed and we were surrounded by amazing and talented women. It felt amazing to be able to celebrate it, with women who were Doctors, nurses, mums, CEO's etc. The significance of that moment will live with me for a long time. Comparing this moment to one less than sixty years ago, I do not think many would have thought it would be possible. Girls can really get the job done. And look at us all now; having our own bank accounts, running businesses, leading research. We really are paving the way for future girls and women.

Finally the night came to a close, the last puddings were eaten (Sticky Toffee Pudding with ice cream, absolutely chefs kiss) and we all dragged ourselves back to our rooms for the night.

Picture of square shaped sticky toffee pudding, with caramel sauce poured on top. Next to it on the left is half of a strawberry, one small scoop of vanilla ice cream and tiny crumbles of biscuit. All served on a white plate.

Turns out I did have a good sleep and was able to relax before the big event.

Sunday 8th March

Sunday the last day, coincidentally the day our panel was happening and we all were up and ready by 8 am. The nerves were real and I had probably had a touch too much caffeine the day before which was not helping.

We then got up onto the stage and were mic'd up before everyone started coming in. When I say everyone, I mean everyone. The whole room was filled with people and the reality of doing this panel kicked in quicker than I ever thought possible.

We all introduced ourselves, spoke about our diagnosis and then were asked a bunch of different questions. It was a really easy discussion between us all, and all of us had different ways of contributing to answers. The more it went on the more I realised I had forgotten I was in the same room as all the other viewers.

Then the hardest bit started. The end of our panel time was given a Q&A session, and so many hands went up I lost count. The parents were asking questions, I will be honest, I did not feel qualified to answer. We all gave advice in the best way possible, guided each other through the session and gave people the time and place to talk about how they really felt.

The honesty in that room was so impactful there were moments my voice hitched and I thought I was going to cry. I felt honoured to be able to have a few moments with parents who were in some of the darkest times in their lives and shared with us their questions.

Once the session was over I have never heard applause like it, and we left the stage to an army of people who were so grateful it had happened. It felt so humbling to be told how much parents felt supported and had hope after that session. In the ten seconds I had free to get a drink I could not move through the crowd of people who were coming up to me. It was honestly cathartic listening to these amazing people, hearing their gratitude and their own stories. It felt like I had a big band of a new family that just made me feel so welcome for being myself.

Being part of that panel was one thing I will never take for granted, because the reaction to it showed how much it was needed. I am eternally grateful that I got the opportunity to be on that stage with four other amazing people who told their stories to the world.

Now what happens? Well who knows, from this weekend alone it proves that it really can be a small world, and hopefully this discussion will be more in the mainstream as time goes forward.

For now, it is back to my little corner of the world where I'm digging my hands through soil to plant the next flower/shrub/herb/vegetable I bought for my small little garden. Just taking my time with my life and letting it blossom at its own pace.

Who knows whats next for all of us? But I have a feeling it is the start of something.

Something called hope.

Molly-Tastic Treves

Pictured is a view of the outside of a manor house with grey stone steps coming down the side of it. It flows down onto a gravel path and meets a grass field. In the middle of the grass is Molly a white, brown-haired person wearing a denim jacket with embroidery and patches on it. Underneath this is a denim jumpsuit and black converses with white soles. She is facing away from the camera and looking up at a slightly cloudy but bright blue sky.