Jane, 46, from Kilmacolm near Glasgow was diagnosed with a brain tumour in November. She had been having increasingly severe eye spasms for around two years but, in the grip of the Covid pandemic, she hadn’t been to see her GP about it. Wearing face masks also meant that the spasms largely went unnoticed by those around her as well.
But, her optician noticed the eye spasms during a routine eye examination in September and sent her for an MRI scan at the Rothschild Hospital. This found the 3cm low grade meningioma on Jane’s brain stem which was lying on the optical nerve and had wrapped itself around the carotid artery. This is causing stenosis, which is narrowing the artery, by around 50% so Jane’s right eye cannot fully open. It also significantly increases her chances of having a stroke in the future by restricting blood supply.
“The eye spasms had been happening on and off for the last two years. My eye had also gradually begun to close which I hadn’t had checked out by the GP due to the pandemic. My husband and children had commented on it when they saw me in photos but we just assumed that I was tired or maybe it had been caused by the flash. I am very grateful to my optician as I honestly think that she saved my life.”
In the months leading up to Jane’s diagnosis, she had been feeling tired, more irritable than usual and her usually optimistic personality would easily fluctuate. Unbeknown to Jane at the time, these are all classic symptoms of an adult brain tumour. However, she didn’t think much of it at the time and it never crossed her mind that she may have the disease.
Jane had lost her grandfather to an aggressive and inoperable brain tumour as a child but, other than that experience when she was young, she had no knowledge of brain tumours or the symptoms that they can cause.
The location of Jane’s tumour makes it inoperable due to the risk of causing significant and life-altering damage. So, her only treatment option is to have gamma knife radiotherapy to shrink the tumour which will start in February. This will be alongside regular scans every six months to monitor her condition which Jane says she finds difficult, especially the wait for results. Jane also currently takes cortisone to manage swelling and inflammation as well as regular examinations to monitor her optical nerve.
Jane is fortunate to have a supportive family around her including her husband and their three children. She says that talking things through and connecting with others has helped her to come to terms with her diagnosis and the impact it will continue to have on her life.
Jane said: “My family have all been amazingly supportive. My husband simply couldn’t believe what he was hearing when I told him. My brother was really shocked and my uncle, who I am very close to, was very upset. He couldn’t really digest the information and needed some time to get used to the idea. So, he had a look online and then talked me through it all to reassure me afterwards.
“My mother was the last person I told as I wanted to protect her from the harsh reality of it as I knew she would be upset too. I tried to be strong for her but it was incredibly difficult to say the words: “I have a brain tumour,” to her.”
Jane has also regularly turned to the website and the online support groups offered by The Brain Tumour Charity as a valuable source of information and comfort. She is raising money for the Charity by making regular donations and she has plans to take on a running challenge too. Jane hopes the money she raises will help to fund both raising awareness of the disease and conducting research into finding a cure.
She said: “I often feel like my hands are tied because no operation can remove my tumour. I can’t do anything about it and I feel powerless. This is scary, frustrating and it also occasionally makes me angry too. It’s hard not to think “why me” sometimes as well. It is a major life change and such a big blow to the system.
“I do sometimes also feel strong and I say to myself that it will be OK, that I will be able to keep going and that I can be strong for my family as I know that they need me by their side to support them too.
“I hope and pray that, one day in the future, a treatment option will be found so that my tumour can be removed as I know that neurosurgeons are lifesavers. Walking around with a brain tumour in your head is a crazy and colossal feeling but I just have to accept it.
“Laughing with my friends and family and enjoying therapeutic activities such as singing or cross-stitch sewing really help me to ease the pain. It is easier said than done but talking really helps too as well as releasing each emotion as they come. Be brave and you will get through the journey.”