Here is Annie’s story about living with a brain tumour and how it can affect you:
- What led to you being diagnosed with a brain tumour?
In November 2013 I became aware of floaters in my right eye. I put it down to high blood pressure but decided to have my eye sight checked.
The optician referred me to Sunderland Eye Infirmary and I went to see a consultant ophthalmologist. I then went for more tests.
Then I was referred for an MRI scan at Sunderland Royal Infirmary within a month of my eye test. I was shown a scan with an enormous mass in my brain.
2. How did you feel about the diagnosis?
Confused. I didn’t even understand I was going for surgery at the Royal Victoria Infirmary. I remember bits and pieces, like signing the consent form but it is still all a bit of a blur.
I am pretty sure now that I was hallucinating after the operation as I tried to leave the ward without being discharged. I was convinced I was in for taking an overdose and I heard voices all the time.
3. What were your discharge arrangements?
I can’t be sure what they were but I was discharged into my Mum’s care. She must have had a tough time because the voices in my head kept on and on.
4. What support did you and your Mum get
Well I know my family were around but beyond that – nothing. It was left to us to manage and pick up the pieces. I am not sure whether that’s because my operation was in Newcastle and I live in County Durham.
5. How are things now?
Now I know that the surgery did remove the tumour from my brain. I didn’t take in all the information at discharge so now it’s up to me to seek support and advice – and monitor changes if I am aware of them.
6. Looking back what would have improved your experience of care?
It was a confusing and scary time and it would have been great to have peer support or meet others who had been through the same thing as me.
I found the The Brain Tumour Charity in April when my Mum met some volunteers who were collecting for the charity. I joined their Facebook group and that led to me finding the meningioma group and I visit their page every day. My questions are always answered by the group all of whom have been through similar experiences.
I have been to one support group hosted by The Brain Tumour Charity but getting there isn’t easy as it takes 2.5 hours on buses and it tires me out.