Taryn Baker was diagnosed in March 2019 with a grade 2 Astrocytoma. Taryn had been suffering from seizures for around 11 months. Her doctors were putting it down to ‘Just Seizures’.
Taryn’s Astrocytoma Story
In early 2018 I was battling to get up in the morning for work and was exhausted by the end of the day to the point where I would fall asleep on the couch when I got home. I felt nauseous a couple of times for no reason. I started having seizures in March of 2018. I went to my doctor with my concerns, she sent me for an EEG scan which showed some sort of ‘unusual activity. They put it down to epilepsy and gave me seizure medication and sent me on my way.
I was getting the seizures more and more frequently, I spent a year telling my doctor things were not getting any better. She finally referred me to a Specialist Physician who sent me for an MRI. The scan showed I had a Grade 2 Astrocytoma. I was booked in to have it removed on the 19th of March 2019.
The surgery was a success but I needed rehabilitation for speech therapy, occupational therapy and physical therapy. I had physical therapy as I needed help to get my strength back and coordination while walking. I had occupational therapy as I couldn’t write, I also had very limited movement in my right hand so I was doing things with my left hand a lot, like opening doors, opening windows, pouring drinks, eating food, it was like my right hand felt like a foreign object, so that also lasted few months.
I needed speech therapy as I had apraxia of speech and Broca’s aphasia for a few months, I really had to concentrate on what I wanted to say and then would only be able to get a few words out like ‘need drink’ ‘need up’ ‘need bathroom’.
I still have a bit of a problem with word-finding now two years on from surgery, especially if I’m in a group or with people I’m not comfortable with.
A year after my surgery and with no more seizures I starting to wean myself off my medication. Sadly in 2019, I started having seizures again. I was put back on my medication at a higher dosage.
My last MRI scan in July 2020 showed no regrowth of the tumour but I do show scar tissue, therefore my surgeon did warn me that if there was scar tissue I might have to stay on the medication forever.
For the past year I have started having seizures again mainly in my sleep but one during the day – they have been nocturnal tonic-clonic seizures, I have had 6 so far, currently trying to get to the bottom of why they are happening after doing great with no seizure activity for over a year.
I have lost a lot of my confidence – hopefully, one day soon I’ll be confident again. The things that are getting me through it is ‘The 3 F’s – Faith, Family and Friends. I am very grateful to my family, my husband, my neurosurgeon, all of the nurses and everyone at the rehab centre who helped me get to where I am now.
What is the toughest challenge a survivor faces?
I feel as it is an “unseen” illness people expect you to get back to normal quickly, they don’t realise the everyday challenges that are faced
Any advice for people or loved ones that get daunting diagnoses?
- Ask questions even if they sound silly,
- Be kind and patient with yourself,
- Take time for yourself,
- It’s okay to be scared just do not ever give up fighting,
I am grateful to Taryn for sharing her story and for showing us how love really can bring us through the worst circumstances.