Around two years ago I was diagnosed with a rare brain tumour called Oligodenglioma. As March is the designated Brain Tumour Awareness Month for the UK, I wanted to write something that will hopefully highlight some of the symptoms.
An issue that needs to be addressed is that it can take a long time to get from that first doctors appointment to an actual diagnosis. There are many reasons for this -a major one being that some of the warning signs such as migraines, dizziness and vertigo can often be mistaken for something else in my case Labyrinthitis an inner ear infection. Everyone’s journey is different, I can only tell my own personal story but hopefully it will help someone out there.
So, before I became ill I had a hectic life I was holding down two jobs while studying for a Masters degree in Journalism. I had many passions including photography, poetry and reviewed music events…Life was good!
I started getting excruciating pain in my temples and would often vomit in the toilets at work. I put this down to stress and not eating properly as I was so busy and had constant nausea. Over the coming months I noticed unusual symptoms such as blurred vision especially from computer screens, traffic lights and artificial lighting in supermarkets which made me really dizzy. It got to the point that I was staggering home from work as if drunk. I started having strange episodes at work when on my computer which we later found out were seizures. The easiest way for me to describe mine are that it feels like an outer body experience while being on the waltzers and a roller coaster.
After around nine doctors appointments I was sent for an MRI scan which revealed the abnormality. I have a lot of treatment so far including surgical procedure called a Craniotomy were half the tumour was removed. I was in rehabilitation to learn to walk again as the tumour affects my left leg. Botox around eyes for double vision. Also, different medications to try to control the epilepsy this is ongoing at the moment and we are in discussion with the Walton Neuro regarding a second operation. The seizures are impacting my quality of life and if the tumour changes grade in between scan it will become inoperable. The main risk from surgery is to my left leg but I feel I have some control at the moment and want to try and get my life back before my options are reduced. It has been a whirlwind of emotions but I have met some incredible people along the way and have so much support I am very lucky.
If anyone is suffering with similar symptoms I would advise not to panic as it could be something minor and unrelated. If however, there are multiple signs that something is wrong be pro-active go the doctor explain in detail what is going on and if your not happy ask for a second opinion. Early diagnosis is so important with this disease.
I wanted to turn a negative and scary situation into a positive one, so I set up a Just Giving page and I began blogging from my bed while in hospital and people started to interact with me and many were kind enough to donate. According to the Brain Tumour Research 16,000 people are diagnosed with a brain tumour every year. Brain Tumours are the biggest cancer killer in children and young adults under the age of forty. Despite these figures I was alarmed to learn that only 1 percent of the national spend into cancer research is allocated to this terrible disease. In order to find a cure funds and research are vital I would like to take this opportunity to thank everyone who has donated so far.
It is the Brain Tumour national event wear a hat day on the 29th March a really fun way to get involved with work colleagues and friends to raise awareness and much needed funding, every penny counts. To find out more or donate to visit my just giving page.
Follow Katy’s story on her blog katyfierce1.wordpress.com
