Lisa Connell

Years ago I was repeatedly told my brain tumour was “stable” because scans were only being compared to the previous 12 months.

It wasn’t until I questioned things and asked doctors to compare newer scans back to my original MRI from 2006 that they realised my tumour had actually been slowly growing over time.

In 2012 I underwent debulking surgery, where less than 5% of the tumour was removed purely to create space for swelling during treatment. In 2013 I then underwent a second round of radiotherapy.

Fast forward to 2024, I was told my tumour had started growing again from 2020 to 2024.

Recently, after another MRI, doctors were again mainly comparing scans from 2024 to 2026. Because of what happened years ago, I asked for my scans to once again be reviewed over a much longer timeframe by the MDT team.

Tomorrow I finally have my follow up consultation.

If you have a slow growing tumour, always advocate for yourself and never be afraid to ask for older scans to be compared too. I’d hate for someone else to go through what happened to me.

We would like to introduce a new campaign to the BLF family.

You may have seen Harley’s story on National News, his family are raising £2.5m for multiple operations in the USA, to give Harley the best chance in life.

Harley’s story really touched our hearts, and we want to support in any way we can.

All funds raised previously by the family, are now with the BLF, in an account restricted for Harley’s treatment.
We have updated the new page to show this.

Harley’s family and friends have been working day and night, and in just short of 4 months, have managed to raise just over £700,000 of their target.

Here is a message from Harley’s mam.

“Harley is 15 years old and was born with a rare condition called spondylocarpotarsal synostosis, which affects his spine, bones, hearing, and growth. Despite a lifetime of countless surgeries and medical challenges, Harley has always been a brave, strong, funny and loving boy. After following medical advice from experts, Harley underwent an anterior spinal fusion in 2018 caused after which he started experiencing breathing difficulties today he is rapidly losing the ability to breathe on his own. His only chance of survival is undergoing lifesaving treatment abroad that will cost over £2,500,000, and we desperately need your help to be able to raise this amount”.

Every donation makes a huge difference, every share opens up a new avenue for Harley, so please do follow their social media pages and share them with your contacts.

If you would like to get involved in fundraising for Harley, please drop us an email to [email protected]

Justgiving - https://www.justgiving.com/campaign/blfhopeforharley

Follow his Facebook - https://www.facebook.com/share/18MqwU3HbC/?mibextid=wwXIfr

Some days I can take on the world.

Some days, like today, two hours sleep, health battles, exhaustion and pressure all hit me at once.

I’m lying in bed drinking the hot chocolate my daughter just brought me, trying to gather the strength to keep pushing forward with Influential Stars whilst also fighting battles people don’t always see behind the scenes.

I think sometimes people assume that if you keep posting, keep creating and keep building, you must be coping all the time. The reality is, some days are incredibly hard.

But even on the hard days, I still remind myself why I started.

So today, I’m allowing myself to slow down a little, breathe a little deeper, and simply get through the day one step at a time.

If you’re struggling today too, you’re not alone.