Cheshire family call for greater awareness of brain tumours following death of their dad

A daughter who lost her beloved dad to the most aggressive form of brain tumour has shared her heartfelt and candid motivation to fundraise for The Brain Tumour Charity.

Siobhan Manton, 28, from Cheshire, is putting her best foot forward, along with some of her closest friends, to support The Brain Tumour Charity after her dad, John, passed away in February this year.

Siobhan and a group of seven of her friends will be walking a 26-mile marathon through London in September to raise much-needed funds for the Charity. This will be the second fundraising walk that Siobhan has taken on as she completed a 26-mile hike in the Lake Distract for Macmillan Cancer Support in 2019.

She is following in her brother’s footsteps after 25-year-old Callum and some friends took on the Three Peaks Challenge in 24 hours in June 2019. He also took part in a 10K fun run which was supported by John’s employer, Barclays Bank. The family have so far raised an amazing £23,000 for The Brain Tumour Charity.

This is in memory of their devoted dad who was diagnosed with a Glioblastoma in 2018. Despite several rounds of gruelling treatment, he left behind his partner Yvonne, Siobhan and Callum when he was just 59-years-old.

It was in late May 2018 that John first began having what became to be known as symptoms of the brain tumour. John told his partner that he could hear music playing in his head. He also began to slur his words. The family thought that he was having a stroke. Siobhan was taking her dad to Northwich Infirmary but they only got as far as the end of the road where he lived before John had a seizure so she called an ambulance. He had a CT scan and blood tests yet they all came back clear.

John was referred to a support clinic for people with Epilepsy and he was given medication to control any further seizures. However, John decided to use the private healthcare he had through his work as an Operations Analyst for Barclays Bank.

He had an MRI scan a couple of weeks later which found a mass on his brain the size of a grape. John was referred to The Walton Centre in Liverpool for treatment and he had surgery the following month. The family were elated that all of the tumour was successfully removed and he was back home and feeling positive a few days later.

However, tests to the mass which had been removed brought the devastating news that the tumour was a Glioblastoma, which is the most aggressive form of primary brain tumour. John was given between 6 to 18 months to live. The family were given this information on 2 August – which was just one day before John’s birthday.

Siobhan said: “We were so pleased with the results of surgery yet we had no idea about what was to come. The results appointment was a complete blur and we cried. But we also had to pull together as a family and we became stronger in order to try and fight this horrible disease.

“Dad always had a positive mindset and so he was determined to fight the tumour. We would all be feeling sorry for ourselves and worrying about what time we had left with him but Dad would just say “These are the cards I’ve been dealt and I’ve got to carry on with what’s been given to me.” He never once complained about anything – he just carried on with life and he absolutely played those cards.”

John began courses of both radiotherapy and chemotherapy. However the chemotherapy reduced his platelet count so he was admitted to hospital where he spent the following six weeks. In October, a scan showed that the treatment had been successful and the scan was all-clear. He continued to have regular scans and, for a year, they were also all-clear.

Sadly, in October 2019, nodules were found around the original tumour site so John was given another course of chemotherapy. A further scan in January 2020 sadly revealed that the tumour had grown back so John continued with chemotherapy and another round of radiotherapy.

In April 2020, during the height of the first Lockdown and as John’s condition worsened, the family were told the sad news that the treatment hadn’t worked and that the tumour had grown. An alternative chemotherapy drug was given after John’s low platelet count had risen, which was monitored by regular blood tests. All consultations were done via a phone call and John had to attend appointments at the Clatterbridge Cancer Hospital for the blood tests by himself, even when he was struggling with his mobility.

A further scan in July found that the tumour had grown again so, when John’s platelet count had risen, he was given more chemotherapy. He was also dragging his foot when he walked, his face was increasingly swollen, he struggled to get words out and he was increasingly forgetful. A scan in September showed some signs of improvement so this time a lower dose of chemotherapy was given.

However, by October, John’s condition began to deteriorate as he was struggling to walk and needed to use a wheelchair. In November, John’s consultant broke the awful news that the tumour was growing rapidly and that he only had around two months to live.

Siobhan said: “Covid made it difficult for us all. Dad was shielding, getting his shopping delivered and we helped when we could. It was so hard not to see him but we knew that we were doing the right thing. We spent time in the garden and on walks which he loved when we could and we made lots of memories in the summer – just before Dad got really poorly.

“We had to be told on the phone how long Dad had left to live. He had been so determined to not give up and prognosis was heartbreaking. Yet, he continued to remain positive, just as he always had.”

Siobhan spent those last few months juggling her job as a primary school teacher with doing all that she could to care and support her dad.

She added: “It was when Dad became really poorly that I began to struggle. I would already be tired from work when the schools went back in September and I would go and see Dad and do what I could. It was mentally exhausting. I couldn’t make any solid plans to relax or take time for me because of the fear that something would happen to Dad.”

John spent the start of 2021 at home but his condition worsened. In February, he was moved to the St Luke’s Cheshire Hospice and he sadly passed away on 12 February.

Siobhan said: “We knew it was coming – it was just a terrible case of when. He came home from the hospice for just a week and I spent an afternoon with him. He didn’t speak to me much but as I left he said “Love you” which were then the last words he said to me. It was a painful time – I would wake up every day thinking “is it going to be today?” I spent all of my time with him and every now and then when I spoke to him he would squeeze my hand. 

“I am incredibly grateful for the amazing nurses who looked after Dad. He was different on the day he died – we saw him at tea time and he died at 9.30pm. I fully believe that he chose to die when Callum and I had gone. Nothing can prepare you for that moment – you think you have prepared yourself for it but it’s impossible.

“Dad fought until the very end. It is still very raw for us at the moment and we miss Dad every day. The memories I have of my Dad are always happy ones. He was full of life, loved spending time with friends and family - his brain tumour diagnosis didn’t change this either.”

Prior to John’s diagnosis, the family knew nothing about brain tumours or their potential severity. They firmly believe that more awareness of and more research into the disease are desperately needed, even just to bring it in line with other cancer types.

The family found out about The Brain Tumour Charity through John who attended many of the organisation’s group support sessions and proudly always wore his branded wristband. So, Siobhan and seven of her friends are walking to raise money for The Brain Tumour Charity and also MND Association after the family lost their stepdad, Keith, just five months before losing their dad.

Siobhan said: “I had read so much about other cancer types but nothing about brain tumours – that’s not OK and we need to raise their profile more. There are so many symptoms which can be missed – we were lucky that Dad had a seizure, what if he hadn’t? So many people are diagnosed and die weeks later yet we were incredibly lucky to get two and a half years with Dad. Maybe if there was more awareness then more people would be lucky too.

“My friends are amazing and they have been there for me through all of this and we’re excited to raise money for such a worthy cause.”

The Brain Tumour Charity is the world's leading organisation into the disease and the largest dedicated funder of research into brain tumours globally. The organisation is determined to find a cure for the biggest cancer killer in children and adults under 40-years-old.

It is encouraging people to take on the Conquer the Challenge fundraising initiative to help find a cure faster. For more information visit: https://conquerthechallenge2021.thebraintumourcharity.org/