Fight Tumours

05/06/2026

Silly billy me.

Don't be an idiot like me, immediately take emergency seizure meds.

So yesterday, I did the school run, in the torrential rain with my mate Beth while lazy Sam sat in the car all dry (should mention Sam does all the school runs.... please don't stop keeping me alive)

Did school run, on the way back to car with Max I lost speech, kept on going properly 30m, face seized, tonic-clonic seizer. Max was a star, it's a horrible thing to see and I can't communicate, he kept on asking if he should go get mummy, he is a smart kid and sprinted to get mummy (100m if that).

Basically ambulance came, before then Beth and Sam turned up and there were school mum's aiding me (massive thank you to you x). Went to Bedford Hospital and I'm fine.

Amongst all the waffling, if I'd had taken emergency meds.....

1 - Would I avoided it?
2 - I didn't have medical id bracelet - What a P***s
3 - I wasn't wearing smart watch is Seizure Detector - What a P***s!

04/06/2026

Max's first trip to Germany! And the first time on a plane!

26/05/2026

Much more technical description that mine, is actually named Pinky and is a very angry circle that lives is my head!

GBM is not like most brain tumors. 🧠

Glioblastoma is one of the most aggressive brain tumors.
It grows quickly, spreads into nearby brain tissue, and is difficult to remove completely.

Because of this, it’s more likely to return after treatment.

This is why research isn’t optional, it’s urgent.

Source: Mayo Clinic
🔗 https://www.mayoclinic.org/diseases-conditions/glioblastoma/symptoms-causes/syc-20569077?

23/05/2026

A little video for those visiting CeGat and need to kill time! Hohenzollern Castle is really close, good for a few hours, restaurant and beer garden, gift shop and general castly shizzle.

23/05/2026

I (Max) got invited to Race Wars UK

Thank you so much for having me, Dad and Grandad, we had a really good boys day!

Max

22/05/2026

With tumour-versary tomorrow, I've been looking through the last year of photos, videos, messages which previously I haven't done.

Lots of weird feelings from things I had forgotten.

And then I heard this monologue, which I have heard a million times and never really listened.

Kris

10/05/2026

Something fun for us today with Race Wars UK

06/05/2026

RESET DAY!!

Yesterday’s oncology review was a big one… and honestly, some seriously good news 🙌

Latest MRI shows no growth and the tumour is now barely visible. There are still cells there and a bit of "flair" (explanation below), but overall… we are heading in the right direction. It is too soon for this to be because of the treatment in Germany, so I guess I am just doing better than expected 10 months into a 12 to 18 month prognosis, for which I am very grateful.

So the flair on my MRI shows an area of enhanced activity. They inject a dye before the MRI which highlights anything that shouldn’t be there, like tumour tissue, brain swelling or cancer cell activity. They cannot see the cancer cells on the MRI – it isn’t that detailed. On a normal MRI, the dye wouldn’t show anything. When they see this flair, they then discuss the factors that could feed into the cause of it. This could be any of the following – brain swelling, tissue necrosis or irritation from radiotherapy. It could be the start of cancer cell activity, it could be irritation still from the surgery. In the report they indicate the highest probability cause, which at the moment is likely radiotherapy irritation. But essentially they cannot say for sure and just go by a best guess – which we cling to for positivity.

Our other theory (not discussed with oncologist but through our own research) – the large bleed on the brain I had after surgery could actually have helped to destroy the tumour. Cancerous tumours thrive in oxygen-deprived environments. When I had the bleed on the brain, the surgeon told us that it could help kill off some of the tumour. There is oxygen in blood, therefore could it be possible that the reabsorption of this blood, has flooded the area with oxygen, thus stopping the tumour growing and thriving in that oxygen-deprived environment? Who knows…

Not all glamour though… turns out I’ve become a bit of a chunky monkey 🐒 — nearly 10kg in 3 months 😅
In my defence, steroids + Easter + multiple birthdays + cake didn’t exactly scream “discipline”…
BUT no major telling off, just a plan:
➡️ Reset
➡️ Balanced diet
➡️ Sort it out from today

Seizure-wise, the mini ones need tightening up. Plan is to introduce another anti-seizure med alongside Levetiracetam — this combo is meant to give better control, so fingers crossed 🤞

And the bit I’m most excited about…
Steroids dropping from 4mg to 2mg 🎉
Can’t wait to feel a bit more like myself again!

Overall… a proper RESET DAY
Good news, clear plan, moving forward 💪

Thank you all for sticking with me through this — onwards we go ❤️

03/05/2026

CeGat Trip #2 – Vaccine 5 done 💉

That’s the second trip wrapped and vaccine number 5 in.
All good so far — no dramas, just the usual angry wasp sting in the belly and a fair bit of tiredness.

I’ve had a few tiny seizure-type bits recently — literally just some face twitching — nothing major. CeGat aren’t concerned at all. Their view is the vaccine is still building up and doing its thing, and this kind of activity doesn’t interfere with it.

For those interested in the nerdy side (I know a few of you are 👀):

The vaccines are personalised to my tumour (based on its genetic mutations), and they’re designed to train my immune system — especially T-cells — to recognise and attack it.

They inject into the belly rather than anywhere near the head because of the blood–brain barrier (basically the brain’s built-in security system).
By going into the fatty tissue, the vaccine gets picked up by immune cells, processed in the lymph nodes, and then those trained cells circulate round the body — including back into the brain — to target the tumour.

Steroids are still in the mix (4mg dexamethasone daily). Ideally lower, but they’re at a level that’s not expected to blunt the immune response too much — it’s a balancing act between reducing swelling and letting the immune system do its job.

We also get the latest MRI scans and report next week — so fingers crossed for no growth and a solid update 🤞

So overall:
Treatment still progressing ✅
Body still responding ✅
No red flags stopping anything ✅

On we go 💪