Shaun’s story
After suffering a seizure which was initially thought to be caused by a stroke, Shaun was diagnosed with an oligodendroglioma brain tumour. He talks about his experience, and how support around him keeps him positive.
I am Shaun, a 52 year old from Bilston West Midlands who has been married to Melinda for 24 years, with a 28 year old son and a 20 year old daughter and two beautiful grandchildren which I absolutely adore.
Saturday 9th April 2022 was a normal day where I went into work on overtime, my usual jolly, happy self, singing and making jokes with my colleagues. I finished work and was looking forward to some extra days off to spend with my wife – it was a bank holiday and in the early hours of Sunday we were dropping our kids and their partners off at the airport for a holiday abroad.
Melinda and I got back from Birmingham airport about 3.50am.
Life changed overnight
We felt shattered and got straight in to bed around 4am. The rest for me is a blur as at around 4.15am my wife found me having a seizure in bed and called the ambulance. This is where my life changed for ever
I was rushed into Russell’s Hall hospital and was initially given the diagnosis that I had had a stroke due to the weakness in my right arm and my wife said my face had dropped after the seizure. It took a while for me to really come round and understand what was going on. Melinda and I agreed we would not tell our family until they were back from holiday 14 days later.
I was admitted to the stroke ward and looked after really well. Due to already being a kidney transplant patient I was on a cocktail of medication and they had to crush tablets for me to take them as I had bitten my tongue during the seizure.
News of the brain scan
I was still in hospital on the Wednesday 13th April when a doctor came to see me with the results of scans and blood tests. He told me that the brain scan that I had had showed up a mass which they thought was a tumour and that I would be referred to the Queen Elizabeth Hospital where the specialists were.
My wife was at work so I called her as it had not really sunk in, and she headed straight to me and arranged a meeting with the doctors to get some clarification as I couldn’t remember everything I’d been told.
I was discharged just over a week later with anti-seizure medication and details of brain tumour Clinical Nurse Specialists at the QE Hospital who had called us to arrange our initial appointment.
A further complication a few days after discharge saw me back in Russell’s Hall with a long wait in A&E. I had a persistent pain in the back of my knee which proved to be a blood clot, so that ended up with Melinda having to inject me twice a day with blood thinners.
It was a lot to take in and we felt guilty keeping it from our children but we just could not tell them over the phone it had to be done face to face. Once they were back home, we had to sit them down all together. They were devastated but we had to remain positive as a family to move forward.
Back to hospital and a long stay
Life was hard, I spent time pottering around the house, as now I could not drive, and I was frustrated, and my wife said I was acting out of character. On the 30th April, after getting an early night, Melinda found me having another seizure. Once again I was admitted to Russell’s Hall hospital but this time I was worse. During the seizure I had bitten my tongue badly which resulted in me being admitted to ICU due to the swelling in my throat. I was in there for nearly two weeks, having to have medication drips and build up drinks being fed through a pipe up my nose as it had affected my swallowing.
Shaun, recovering in hospital, May 2022
After ICU, I was transferred back on to the stroke ward. I lost lots of weight and was a shell of the man everyone knew. I had massive bruising under my chin, tongue and in my mouth which gave me pain up the side of my face which was managed by the maxi-facial doctors. It took a few days for this to finally start healing but I did start eating soft foods and to drink and take tablets normally.
It was agreed between the QE hospital and Russell’s Hall Hospital that I needed to stay in and have an IVC filter fitted to my main artery to stop any clots that may be in my body travelling to my brain, heart or lungs. This was fitted prior to me being transferred to the QE on the 25th May 2022.
Brain biopsy and treatment
I just wanted to be home with my family but I had to find out what was going on. So on the 27th May 2022 I was taken down to theatre for a brain biopsy to see what the tumor was, how best to treat it and if they could remove it.
The operation went as well as it could, though my wife said it was the longest day of her life waiting to see if I was ok. The following day she visited and I showed her my right hand and arm which was not functioning correctly. I couldn’t grip, lift or hold anything. They said it was possibly damage from the surgery for the biopsy and trying to de-bulk the tumour.
I was finally discharged on the 29th May, a month after being admitted. Since then I have attended the QE cancer centre where I have been told I have an inoperable oligodendroglioma grade 2. I have had 6 weeks of radiotherapy followed by 12 months of chemotherapy which finished at the end of September 2023.
Facing the future
Having mobility issues has been life changing and the mental torture is real. However, with the love and help of my family and friends, I am staying positive and trying to get on with life and back to some normality. I have given myself goals to achieve and I will keep pushing to get myself back on track and back to the old Shaun everyone knows.
Brain tumours can be devastating, not just for the person diagnosed but for their loved ones as well. The emotional and financial toll can be overwhelming. That’s why it’s so important to have organizations like Brain Tumour Support that provide practical and emotional support to those in need.
Shaun Hann | January 2024
I am staying positive and trying to get on with life and back to some normality. I have given myself goals to achieve and I will keep pushing to get myself back on track and back to the old Shaun everyone knows.
One of Shaun’s goals for 2024 was to summit Snowdon, the highest peak in Wales. With the great encouragement of the Sedgley Mountaineering Group he trained hard to be ready for the challenge on Sunday May 5th, 2024. It was an amazing day!
Photo credits: Sedgley Mountaineering Group
‘Summit Snowdon For Shaun’ also raised vital funds for Brain Tumour Support so that other families like Shaun’s can be supported through the challenges that a brain tumour diagnosis brings.
Summit Snowdon for Shaun JustGiving page
Brain tumours can affect any one of us, irrespective of age, lifestyle or general health. Every 33 minutes someone in the UK receives this shocking diagnosis, and when faced with the words ‘You have a brain tumour’ the right support to help navigate the path ahead is vital.
Brain Tumour Support wants to ensure that no one feels alone at any stage of that journey. So if you are able to make a donation, helping us to be here for more people like Shaun, we would be very grateful. Our support services are always free to access and rely on the generosity of fundraising and donations to be maintained. Thank you so much.
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