Jill’s Story

On the 3rd of March 2021, my lovely Dad, aged 57, was diagnosed with a Grade 4 Glioblastoma. To say my mum, sister and me are devastated would be a gross understatement. The thought of my sister and I losing my Dad in our 20s, and my Mum losing her husband of almost 30 years who she met as a teenager at high school is lacerating.

I wanted to share my Dad’s story with you as I think it is important as there is very little information regarding glioblastomas of the hypothalamus and I hope in sharing my story, it may resonate with others who find themselves in a similar position to my Dad.

Dad began complaining of a tingling sensation over the Christmas holidays in his face. My Mum at first put this down to stress. In early January, the tingling persisted and he started to complain of a tingling sensation in his left hand. His peripheral vision in his left eye began to deteriorate. My Dad made an appointment at his local GP in mid January, who advised him to go straight to A&E. After bloods and a CT scan, a stroke consultant diagnosed Dad with a stroke in the hypothalamus and he was discharged a day later with no follow up due to Covid.

Dad’s symptoms remained the same for about a week after being discharged but then started to deteriorate further. Dad became very unbalanced and fell a few times trying to get in to the bath. We attributed his lack of balance to the drugs he had been prescribed. A plausible explanation for all of Dad’s worsening symptoms were basically down to the drugs he had been prescribed, but we all had a horrible foreboding feeling that something was amiss.

Around about the 18th of February my Dad woke my Mum up during the night complaining of an excruciating headache and quite rapidly deteriorated (was sick, very confused and very emotional). My Mum rushed my Dad back to A&E and after a further CT Scan, the hospital realised my Dad’s stroke was misdiagnosed and that there was a large tumour now encapsulating his hypothalamus.

Fast forward a few weeks, my Dad had a biopsy a week past Friday at the Queen Elizabeth hospital in Glasgow and the biopsy confirmed the tumour was in fact a devastating grade 4 glioblastoma. Unfortunately, given the site of the tumour, the team cannot surgically remove the tumour as Dad would be left severely disabled. The Neuro team have said that although glioblastomas are one of the more common malignant tumours, it is rare for the tumour to grow in the hypothalamus. He has been receiving a combination of radio and chemotherapy at the Glasgow Beatson and has tolerated the first round of treatment well, and has faced his diagnosis positively and bravery.

All in all, terrible luck for my poor Dad. We are remaining hopeful and positive but are under no illusion as to how Dad’s story will ultimately end. My Dad was a saturation diver, diving to depths of 140 metres plus and living in a saturated chamber for up to 28 days at a time. Over his 35 year tenure, he has worked all over the world. He’s lived in extremis his entire career, so it seems unfathomable to me that he is now at the mercy of a brain tumour. My Dad has a large physical presence and it is desperately sad to watch him degenerate as each day passes. Given my Dad’s occupation, I really did (naively) believe he was invincible and it is so difficult to see him become more and vulnerable and dependent on my Mum, Sister and I. I cannot also even begin to imagine how terrified he is.

Prior to my Dad’s diagnosis, I was completely unaware of how woefully underfunded brain cancer research is. I was also absolutely astounded to learn how little progress has been made in treating glioblastomas. Regardless of my Dad’s outcome, and how traumatic it will eventually be for my Dad and my family - I want to be part of the change for good and help bring attention to this awful and cruel disease. I would like to share his story in the hope in some way it we’ll help others, raise awareness and galvanise support for brain tumour charities and foundations like the Tessa Jowell foundation who are championing for change and are a beacon of hope for those who are directly and indirectly at the mercy of this cruel and merciless disease. I would not want any other family to endure what my Dad and family are going through right now.

I know time is against my Dad, but I hope one day, others may not have to suffer the same fate as my Dad when diagnosed with a glioblastoma.