Mum-of-three Carolyn and her youngest son, Ash, 22, from Wiltshire have opened up about the anger and frustration they carry to this day after Ash spent his teenage years with a brain tumour which was not picked up and his symptoms were instead put down to a series of other medical conditions.
Ash, who was 10-years-old when he first started having symptoms, had a poor growth rate meaning he was much smaller than his brothers, bruises over his legs all of the time and an earache which got worse when lying down. He saw a number of GPs as well as an ENT consultant and had some blood tests but his symptoms were put down to a range of conditions including growing pains. Following medical advice, Ash took paracetamol every night to manage the earache when this actually masked the symptoms of the growing tumour.
Ash said: “The memories I have of my childhood are largely about being taunted by what I was repeatedly told was just an earache but it was actually a tumour. It meant that I had trouble sleeping as it pressed on one side of my head when I was in bed which undoubtedly affected my education as well as my family and social life.
“My mum took me to the GP at least every year as we all knew it was odd for someone of my age to be crying most nights in pain from the undiagnosed tumour. Various other symptoms were also not linked up such as deep bruising which was put down to ‘boys being boys’ or from playing football. No medical professional thought to consider all my symptoms together even though a quick Google now shows that they are all linked to brain tumours. It was a scary time and I honestly thought that I would never get to the bottom of what was happening to me.”
Ash was diagnosed in April 2019 when he was 19-years-old and studying at Winchester University. He suddenly lost sight in one eye in March so he sought medical advice immediately and he was told to go to A&E at Southampton General Hospital. There, he was given some steroids, told that it was likely he had an optical migraine and to come back in two weeks if it did get better.
When the problems with his vision continued, and it was having an impact on his ability to study for his dream career as a teacher, he went back to A&E only to be told again that he had an optical migraine. But, unhappy with this, Ash asked for a second opinion. It was only then that he was referred for a scan the following week with a possible diagnosis of MS.
Ash said: “Before my long awaited diagnosis, I was under the impression the only reason I was smaller was down to a late growth spurt. I had no suspicions of what was happening at all. I just woke up one day with no sight in one eye. My friends and family wondered if I had been hit or something had happened – but it hadn’t.
“Even with the possible MS diagnosis, I couldn’t help but think that things like that magically don’t happen to people like me – little did I know what was ahead.”
The scan finally found the mass on Ash’s brain and he was contacted the next day to arrange an emergency operation to save both his sight and, ultimately, his life.
“I am, and I think I always will be, so angry that Ash’s brain tumour was not picked up earlier during those formative years of his life. He was displaying all of the classic symptoms of a brain tumour which doctors should have recognised. Yet, across all the medical appointments we attended, no one thought to send him for an all-important scan, or to link together the symptoms.”
Carolyn.
Carolyn said: “I am so pleased that Ash knew to always ask questions and that he pushed for a second opinion at the hospital, which probably saved his life. But I firmly believe that, because the brain tumour was missed for so many years, it has had such a huge impact on every aspect of Ash’s everyday life and it will always continue to do so.”
The mass on Ash’s brain was soon confirmed to be an egg-sized craniopharyngioma. He had an urgent operation which removed around 80-90% of the tumour which had wrapped around his pituitary stalk. The family were told that Ash’s pituitary stalk had also been removed but they say they were not told the full implications of this at the time.
Ash said: “I will always remember the moment I was diagnosed – it was like a nightmare. I was at home and I immediately called my mum whilst I was in deep shock. I was told “if there is a car get in it and drive to hospital” which made me think that I had very little time. Mum rushed out of work and seeing her cry when we got to the hospital when she is usually so controlled was a huge eye-opener for me. That was the first time that I thought this was a big deal.”
“I naively assumed that, after I had surgery, I would recover and everything would be back to normal and like it had never happened. How wrong was I. Everything was so rushed so I guess there was little time to fully inform me of the details which would mean I would be on several medications for life, that I wouldn’t see the same again, my memory is poor and that it would cost me my career and my driving licence.”
Ash was keen to get back to university as soon as possible to pursue his teaching ambition, which included a placement at a school. However, the placement was ended abruptly after five of the six weeks which was a devastating blow to his ambition.
He added: “I was devastated when my school placement ended when I had nearly finished it and I had put 110% effort into it to ensure I did a good job and overcome the issues I faced. I was told that I wasn’t fit to be a teacher – this was the last straw for me. I remember standing on the side of the road waiting for Mum to pick me up and being in floods of tears. My life had veered off course so much.”
When he was able to, Ash spent time at the gym, his other passion, and he also completed his university coursework at home as the Covid pandemic broke out. As he realised that his teaching dream may be over, Ash studied to be a Personal Trainer by taking an online course during lockdown.
March 2020 also brought the awful news that Ash’s tumour had grown and that he had an aneurism so he would need further treatment including radiotherapy and possibly an operation. He was also told that he couldn’t go to the gym anymore due to the risk of the aneurism dissecting further.
He was offered radiotherapy for the tumour but, having read about it online, Carolyn asked if proton beam therapy may be an option for more precise treatment to avoid the optical nerve and aneurism. This was confirmed a few days later after Ash was accepted as eligible for the treatment.
After shielding for months, Carolyn and Ash went to Manchester for six weeks in October for Ash’s proton beam treatment at The Christie Hospital in Manchester. Covid restrictions meant that Ash had to attend the appointments on his own.
Carolyn added: “This was an incredibly difficult time as my 21-year-old son was so frustrated at just wanting to be able to live the life he wanted but couldn’t. The Christie were amazing but, due to the Covid restrictions in place at the time, it felt like we were trapped – I didn’t even feel safe going to pick up food shopping.
“During his second year of uni and before the diagnosis, Ash had said to me that he felt like his life was perfect as he loved having independence, driving his car and studying for his dream job. Prior to his diagnosis, he was a star pupil and he was determined to be a Headteacher within five years. All of that was taken away from him. Going to the gym was all he had left by then but even that had to stop.”
Since his treatment, Ash has also been diagnosed with a number of chronic illnesses including Panhypotuitarism, right amblyopia and peripheral vision issues, diabetes insipidus, azoospermia and Spondyloarthritis, which causes pain in his legs, joints and back. Ash struggles with his weight which contributes to his low self-confidence. To manage his conditions, he has to take around 18 tablets a day, which requires alarms on his phone to help him remember due to his short term memory loss and support from his family. He also has various gels to apply and daily injections of growth hormone.
Ash said: “All the various appointments to go to and the medications I have to take sometimes make me feel like a bit of a lab rat. I have to take medication around the clock which means an early night or a morning lie in are impossible, even when coping with fatigue. My mum has to put a lot of her time aside to ensure I am taking my medication – and even gave up her job as a charity CEO to do so. I feel so guilty for this but I am proud of her working part-time in a role focused on improving GP practices as we have had first-hand experience of this system.”
After two-and-a-half years of eye tests, assessments and adjusting to a lack of peripheral vision, Ash has now gained a medical driving license and, following treatment, he has also been able to return to the gym and qualify as a Personal Trainer. He has also gained his degree in Primary Education but this is without the all-important Qualified Teacher Status he would need to pursue a teaching career.
Life is undeniably difficult for Ash as he lives with the ongoing side-effects of the tumour, planning his life around medication, his various health conditions and the constant question mark over whether early diagnosis of his tumour could have made a difference.
Carolyn said: “Although I am so proud of how far Ash has come and all that he has achieved despite his health conditions, it hasn’t been easy for any of us. I know that he would have been a wonderful teacher. Some days are good and some days are bad for him and, as a mum, that’s painful to see as things really do get him down.
“I do think that if he had been diagnosed as a child then he could have received non-invasive surgery and the long-term impact of that would be much less. He wouldn’t have lost his pituitary stalk which is the ‘spark plug’ for functions in the body and he would not have to live with sight and memory issues for the rest of his life. The late diagnosis has cost him dearly in every respect as nothing will ever be the same for him or for the rest of us ever again.
“I carry around a lot of guilt for this – if I had asked more questions of the GPs when Ash was younger then maybe it would have been picked up. I knew something was wrong but I just couldn’t put my finger on what it was. If Ash hadn’t asked for the second opinion when he did then who knows what could have happened – he could be dead.”
Today, Ash’s aneurism is stable and the tumour is small. Alongside his daily medication, he has scans every six months to monitor his condition and appointments every other week for his other health conditions. He says that more awareness of brain tumours as well as their signs and symptoms is crucial to stop more people having to struggle with delayed diagnosis like he did for so many years.
“If I had heard about tumours similar to mine 10 years ago then maybe I would have had an idea of what to look for. But, even more importantly, medical professionals need to know this stuff and not just dismiss children or young adults who may have a serious illness. My life could have been so different if I had been diagnosed earlier. Instead, I was made to feel like I was exaggerating my symptoms and experiences or told that nothing serious could happen to someone my age – if only I had been listened to.”
Ash.
Ash is hopeful of getting a part-time job at a gym as a personal trainer in the near future. He has also joined The Brain Tumour Charity’s Facebook page to find help out more about others who have been affected by a similar diagnosis.
Carolyn added: “As a mother, I just have to be grateful that I did get a second chance with my son when so many other families don’t. I know I am lucky to still have my son but I am always going to be incredibly frustrated about how hard we had to push just to get an accurate diagnosis and the difference an earlier diagnosis would have made. GPs really need to look for red flags across medical history not just what is being presented at the time in isolation. More research into the causes of brain tumours to support this is desperately needed too.”