Sue May’s Own Personal Journey

Being a pragmatist, a characteristic phrase I am well known for using when faced with a difficult situation is “well we are where we are!” however never before has this been more difficult to put into practice than when on August 9th 2010 I suddenly had a brain seizure and found myself not at my office desk but in the accident and emergency department of Jersey General Hospital.

After seeing a stream of doctors and being scanned, tested and x-rayed I was advised some 6 hours later that it was not good news and that I had a mass on my brain. I swallowed hard, my eyes welled and fear and panic ran through my veins. The following days passed slowly and it transpired I had a meningioma than would require brain surgery in Southampton. Then came the better news that it was non-malignant and the surgeon in Southampton was happy to operate.  However I felt ill and scared of what could or would happen whilst at the same time trying to keep those around me confident that all would be well.

In public I smiled but when alone it was a very different story.

We travelled to Southampton 2 weeks later and I had a further shock when I was told that the tumour had attached itself to my skull so I would need to have a Titanium metal plate fitted in my head (a craniotomy), the emotion welled in me but there was no option but to face what was in front of me and have the operation. Luckily it was scheduled for a week later but as each day passed anxiety levels not surprisingly grew!

I was fortunate to receive massive support from family and friends who were positive and named me TOB (tough old bird) and said it would be fine…however this did not stop my fear as to how I would be after the operation. We were advised that because the tumour was on the left lobe of my brain and I was left handed there was a risk of problems with my speech and movement after the operation the picture in my head of me in a wheelchair became something that I needed to deal with and my life suddenly turned upside down.

The operation was performed on 15th September 2010 and was a success and I was fortunate that I suffered no long term after effects.

During my journey I have faced many challenges firstly walking, leaving the safety of hospital, stepping back into the real world, facing people and managing their anxiety, massive tiredness and then coping with severe headaches 24 hours a day where sleep became my only escape from pain. It was small steps. A big achievement became being able to walk to the corner shop and buy a paper never mind the concentration needed to read it! Like many people who experience a big operation recovery is slow and for somebody who was always doing 100 things an hour I had to learn to be patient!

On top of this was the massive emotional trauma both for me and those close to me that such an event causes and the need to look after them as well as myself.

I learnt that I was “loved“ and was fortunate to have a lot of support in many guises from visits from friends, cards, flowers and phone calls to practical help with things like shopping and this made a huge difference. I was not able to drive for a year so my independence has been severely curtailed and I have had no choice but to ask for and accept help.

Obviously there have been good days and bad days, tears, frustration, humility and laughter but now I am starting to feel like “me” again and go to the gym to build my stamina and strength (the gym being quite a new world for me !). Most of all I have learnt how we all take our health for granted and how important it is to get our lives in perspective.

I feel driven to use my experience to help others by building awareness, raising financial support and providing emotional guidance and advice. For me it has been the little things that have helped me the most.

I consider myself to be so lucky to just “be here” but it is important that I use my experience to help others and their families and use what I have learnt on my journey to make a difference and hence the formation of the Jersey Brain Tumour Charity.

I would also like to acknowledge and give my sincere thanks to Mr Paul L Grundy BM(Hons) MD FRCS(SN), Consultant Neurosurgeon, Wessex Neurological Centre & Spire Hospital, Southampton, UK who performed my operation and is responsible for me being here !

 

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