Learning to live again! (Claire’s story)

This week I would like to introduce Claire Bullimore, who is a great friend of mine. As a young lady, her life was changed forever, when a brain tumour was discovered.

“I will always remember the day the doctor said: “I’m very, very sorry but we can’t help you, you have a very small percentage chance of recovery.” That day was Wednesday 23^rd May 2008.

Up until then I had been an independent women living the dream – working hard, playing hard, and loving the London hustle and bustle. I laughed at early morning overcrowded rush hour commutes, smiled as I grabbed my hazelnut latte, and felt lucky to have an office on the 6^th floor in Tooley Street with a wonderful view of the Thames and Tower Bridge.

Earning good money, I had a comfortable life. To anyone on the outside I was in my prime, and for a while I was… until I started waking up in the middle of the night or in the morning being sick from migraines that were so painful I wouldn’t wish them on my worst enemy.

The Monday before that fateful day I had planned to tidy my work desk because the next morning I was going to the doctor… again. It felt like I had been telling them for so long that I wasn’t well, but this time I decided I would not be shrugged off anymore.  The constant migraines, trembling hands, every day struggle to find words, forgetting things like work assignments, fainting at random times of the day and in public places, and finding my eyes were having moments with no vision, even though they were open, were taking their toll.  I was scared and depressed.

I had no idea that when I left the office that Monday afternoon it would be a very long time before I would return.

With no help from the doctor the next morning I headed off to see my optician because at least they may have an idea as to why I was having problems with my vision. The optician said I had bleeding at the back of the eyes and I was sent to The Croydon University Hospital to be checked. Within 3 days, following a number of scans and meetings with doctors, I was in St Georges, Tooting about to be taken into surgery in an attempt to remove a 10cm brain tumour that I was told had probably been growing for more than 10 years.

I survived the 10 hour operation and successful Brain Tumour removal and was hopefully going to be ok, but we wouldn’t know what damage, if any, had been done until I woke up.

Overnight I went from being an independent woman to depending on others. I had lost my speech, word finding, was partially blind, very weak on one side, and didn’t know where I was.  On seizure medication for life due to due to scarring where the operation site was, I also experienced a constant overwhelming feeling of fatigue.

I watched my car licence being sent away to the DVLA. I didn’t realise I would never see that again.  I sold my car and cancelled my gym subscription.  I turned down invitations for nights out that previously I would have jumped at, because I simply did not have the energy to get dressed let alone go out, and my hearing was so badly affected I couldn’t cope with noise.  People said they thought I was very strong and my positivity was inspiring, but the fear I was left with was life destroying as I realised not only would I never drive again, but I would never be able to do the job I had before, or have my previously comfortable life, both financially and emotionally.

Six months after surgery, and following weeks of physiotherapy and speech therapy, I was in a position to go back to work – slowly.  My company were amazing, letting me do things at my own pace, never putting pressure on me.  The pressure, however, came from me – I wanted to be the same as I had been before but without the headaches. It was an impossible pressure.

My work plan was to start back part time and slowly work up to a full day. Day One I went in for just a few hours but it was so strange seeing familiar faces yet not being able to remember people’s names.

For the time that I was away having surgery and rehabilitation, a ‘temp’ had taken my role. Now it was her having to teach me my role from scratch, which was really hard to accept. I would return home in the afternoon totally exhausted, and go straight to bed.  I took several days off, but during this time had another grand-mal seizure, so had to take more time off work again. Eventually, and over time though, things seemed to be getting better. I developed strategies for trying to remember things at work, like writing down every conversation I had and making notes.

Six months after returning to work, still lacking in confidence and battling fatigue, I was told that my company was merging with another and that the London office would be shut down.  Immediately my thoughts turned to how on earth any other employer would understand what had happened to me. How would I get another job?  I went for interviews for similar positions to the one I had, but in the back of my mind I knew I could never cope with going back to a full on, full time job.

I sat down to evaluate my situation. As hard as I had tried, the fact was that my working life as I knew it was over – the responsibilities and the money that came with those, were no more.

I started to look around at stories of other brain tumour survivors and sufferers. I knew that this community was one which would understand and not have any problems with my disabilities and the new slow me. I knew I wanted to help others – we all need people rooting for, and encouraging us. Using my IT skills, I was soon setting up social networking platforms and bringing people together, and Aunty M Brain Tumours Interactive Support online was born.

Throughout the time I was unwell I had kept a diary, from diagnosis through surgery and then rehabilitation. I decided to publish the diary as a book and the response I had was phenomenal. I recently decided to push myself and be a support to others so am undertaking a book tour in a few months’ time.

I don’t have a regular income anymore. Material things are far less important to me now as I focus on ways to support others and bring them together to share experiences. I have had to turn to crowdfunding to pay for things like public transport and accommodation for the tour. The whole thing is time consuming and a lot of hard work, but I need to do this, and if I am successful then it will be an amazing accomplishment for me and a great way for other people to get involved.

The journey to where I am today wasn’t easy. It was horrible. Many times I sat down and wondered just what the point was, what kind of life did I have? For me, finding a goal has been such a positive thing to do and has kept me going, no matter what.  Our experiences and opinions count, and we can m­ake a difference to ourselves and to others.  Be your own driving force.”

I would firstly like to thank Claire for sharing her incredibly inspiring story. To help make her book tour happen, Claire is ‘crowdfunding’ and is in the last week of that now. We would love to make it happen, but it won’t, unless the final part of the money is raised. If you could help with this project you would make a young ladies dream come true! Please follow this link to find out more about Claire’s work and make a pledge. Every penny counts!