Samantha Jose, 34, first began experiencing problems with her vision in her left eye towards the end of last year. She went to see her optician at Vision Express who amended her prescription accordingly.
However, when this didn’t make a difference to the issues Samantha had been experiencing, she returned for a field of vision test and eye scans. This found some issues with her peripheral vision and so her optician referred her to Spalding Hospital. The team there found that her optic nerve was damaged so she was sent to Boston Hospital for an MRI with concerns that it may be MS or Glaucoma, the latter of which runs in her family.
However, the scan found that Samantha had a brain tumour which was pushing on her optic nerve. Doctors told her that if it hadn’t been found then she would have gone blind because of it.
Samantha said: “I had absolutely no knowledge of brain tumours at the point of my own diagnosis – so hearing those words was really concerning. I was told over the phone after the scan had been reviewed which wasn’t ideal as I had no real opportunity to take in the information and then think of the questions I later had.
“You never think that this kind of thing will happen to you – especially as I am young and healthy. In fact, I was angry that it had happened to me. Of course, I knew that something was wrong which was impacting on my vision but not once did I think that it would be a brain tumour.”
It did take four weeks for Samantha to have an appointment with a neurosurgeon who confirmed that it was a low-grade meningioma. During this time, Samantha and her husband, Adam, took their two children, Taylor, 7, and five-year-old Brody to Center Parks in Thetford. They got to spend some quality time together amongst the uncertainty of how Samantha would feel after the operation and during the school summer holidays.
After their time away, she soon had surgery to remove the tumour and, as she recovered well, she was back home a few days later. In fact, she was slowly and steadily doing the school run after she was discharged so she could greet her children.
Samantha said: “It was really nice to get away, enjoy some family time together and to forget about all the worries of the upcoming surgery.
“My children knew that there was something which was making my eyesight funny so I had told them that I would be in hospital for a few days. Before going in, I did all I could to ensure that week would be as normal as possible for them so their usual routine would continue. I know we all missed each other though so I got back to them as soon as I could.
“I think they did find the scar quite scary to see but Brody said it was fine as long as it made his mummy better. I miss playing football with Taylor too which I can’t do in case my head gets knocked but hopefully I can do that again soon.”
It wasn’t possible to remove all of the tumour during the surgery to the risk of causing further damage to Samantha’s vision. So she will now have regular scans to monitor her condition for any changes which could mean having treatment, including radiotherapy, in the future. She was told that her vision would not return but she has learned to cope with the impact this has. She is also taking time off work whilst she is unable to drive and to allow her to make a full recovery alongside ongoing fatigue.
Samantha found out about The Brain Tumour Charity after Adam searched online for information after her original diagnosis. She found the information on the charity’s website about her tumour type really helpful and she has also downloaded the BRIAN app to provide her with a place to keep an eye on her physical symptoms and emotional wellbeing.
Samantha said: “The internet can be a scary place to navigate when you have just a little information about a health condition like a brain tumour. The Brain Tumour Charity provides the accurate information you really need at times like that.
“I have also really benefitted from hearing about other people’s stories and connecting with others who have also been affected by a similar diagnosis. That’s how I know that I have been one of the lucky ones – it’s been three months since I was diagnosed but I am back home having had surgery and I can now make the most of what the future has in store for my family and I. I know now that this will be part of my life but having lived with it for so long I know that I just need to keep going.
“There really does need to be more awareness of the signs and symptoms of brain tumours – I never would have thought that a problem with my eye sight could be because of a brain tumour. It’s not just headaches or even seizures which can be the warning signs. I would advise anyone who has any concerns to get checked out by a medical professional – it’s easy to get sidetracked when life is busy but I am so glad I made the time to push for the MRI which ultimately saved me from losing my vision.”
The Brain Tumour Charity’s Better Safe Than Tumour campaign encourages people to see their GP if they are having persistent or a combination of symptoms including headaches, nausea, fatigue, memory problems, disturbed vision, cognitive changes or speech difficulties. For more information visit here.