The Wight Brainy Bunch

The Wight Brainy Bunch is a small charity on the Isle of Wight providing a support network
and financial assistance to local families affected by Brain Tumours.

Mandy’s Story

My journey began on 11th February 2016 when I was diagnosed with a brain tumour.

I had got up in the night to use the bathroom and tripped over on the way back to bed, knocking my forehead on the corner of the bedside cabinet.  Two black eyes and a few days of headaches later I was made to go to the Emergency Department by a colleague at work (I work at the local hospital).  I’d been having headaches for some time but put it down to work stress.  The Consultant examined me and said she’d like to do a CT scan “to be on the safe side”.  I knew then what they were going to find – just a feeling but I somehow knew.

I don’t think I’ll ever forget her words; “well the good news is there’s no bleed and no fracture.  However we have found a small meningioma”.

The rest as they say is history. I needed to see it, but when I was shown the scan I couldn’t see anything until it was pointed out to me (clearly you have to know what you’re looking for!).  When they showed me the outline there he was in all his glory.  A full 2.9cm tumour.  I named him Timmy.  A little later I had an MRI with contrast which really showed him properly and a friend of mine likened it to a walnut so that was it; Timmy the Tumour became Wally the Walnut.

The hardest part for me wasn’t getting the diagnosis; I can honestly say somehow I wasn’t surprised.  It was telling people and seeing the look of shock then pity then tears on their faces.  I really struggled with that bit so after I told my family I just went public on Facebook, explaining that I was sorry but I needed to do it that way for me as I couldn’t bear the reactions when I told people.  It was a very frank and factual post – no room for emotion, no desire for pity; just the facts.

Once people knew it was easier.  A visit to the Neurosurgeon in Wessex Neurological Centre revealed 97% of these tumours are benign so of all brain tumours to have this was the best one.  Wally was completely encapsulated so I was signed up for surgery, but they had to wait at least three months, partly because I’d had a head injury and partly to see how quickly Wally was growing. 

In September 2016 I had brain surgery to remove Wally – I’d kind of become attached to him and blaming him when I bumped into this as my spacial awareness wasn’t great or I muddled my words – “I’ve got a brain tumour, what’s your excuse??”.  I treated my whole pathway with humour – it’s the only way.

The surgery was easier than I expected.  I had to be in Southampton by 07:30 on the Saturday morning, went to theatre at 15:30 and was back on the ward at 20:20.  I had 15 minute observations throughout the night and lovely white stockings to wear then the ward round at 10am when I was discharged. I was desperate to go home as I didn’t think much of being woken up every 15 minutes!

I went back on the Tuesday for my follow up appointment to be told I was one of the 3% whose tumour was a stage 2 – I had cancer.

I was referred to the Oncologist and saw him two weeks later – lovely chap and very honest.  I asked him would I need chemotherapy? No, I’d had a good clean resection and they think they’ve got all of the tumour out.  What about Radiotherapy?  That was an option but there was a risk that they’d damage healthy tissue and potentially give me early dementia – now if you know me well you’d realise that you probably wouldn’t be able to tell the difference as my memory is shocking as it is so that was a clear case of ‘thanks but no thanks, I’ll take my chances!’.  I asked what the likelihood of it returning is and was told there’s a 20% chance.  I’ll take that – it’s good odds – 80% chance I’ll remain fine.  I thanked him for his time.

I don’t know yet if Wally has left any seeds behind that could be growing – I had an MRI in the December and one again in November 2017; both of which are all clear for now which I’m really grateful for.

It may sound strange but in a way I’m kind of grateful for Wally – I’ve really learned to value and appreciate life and enjoy every minute of it.  I’ve never been a risk taker but decided that once a year every year I will now do something for the Wight Brainy Bunch that really scares me or stretches me to help raise money for this wonderful charity.  Last year we did a sky dive, this year we abseiled down the Spinnaker Tower.

Having a brain tumour diagnosis does change you, and your way of life.  For some it can be absolutely devastating and I fully understand that; for others it makes you grasp the opportunity of the second chance you’ve been given after treatment; I clearly wanted to rise above what had happened and make the most of life. I’ve met some truly wonderful people and am so grateful for my health now.  With the exception of neurological fatigue (I get very tired by the end of the day) I have little or no side effects. 

I’m not going to be beaten by a walnut. 

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