Annie’s story

Here is Annie’s story about living with a brain tumour and how it can affect you:

 

  1. 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.

One Response to “Annie’s story”

  1. Alastair White

    Headway Co Durham meet at South Pelaw every forth Wednesday of the month – please click link below for their website – I am sure Annie will be made most welcome.
    http://headwaydcls.org.uk/

    Reply

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