Portrait: Caroline
21 years ago, I was five months pregnant when my optician saw a brain tumour in my eyes. He sent me to the optical clinic at St James’s University Hospital in Leeds and within a few hours, I was transferred to the neurology department at Leeds General Infirmary...
A little bit about Caroline
The doctors quickly determined the tumour was probably benign, but I was experiencing worrisome symptoms. I was vomiting several times a day which was causing dehydration, my balance and vision was poor, my headaches were bad, and I’d developed hydrocephalus.
The plan was to remove the tumour 6 weeks after my baby’s birth in July. In the meantime, to help relieve my symptoms, the doctors drilled ventricles into my skull. However, the procedure was not successful, and a few days later, I was back in theatre to have a shunt inserted. It too was unsuccessful, so a few days later, the only option was to remove the tumor.
The uphill battle
The expected six-hour operation turned into a marathon of 19 hours, which I later discovered was the longest operation at the hospital. But, a few hours after returning to the ICU, I developed a bleed on the brain and was rushed back to theatre for another 3 to 4-hour operation. It was a month before I returned home, and a few weeks later, I was officially registered blind.
Miracles in the face of hardship
On June 13, 2003, 3 weeks early, my miraculous beautiful and 100% healthy daughter was born. She is now in her 3rd year at Birmingham University studying Biomedicine. Three months after her birth, my husband, baby, and I moved to Manchester to be closer to family. I was placed under the care of another lifesaving and fabulous neurosurgeon at Salford Royal Hospital in Manchester. Over the next 7 years and on two separate occasions, he removed two more benign brain tumours.
Issues that remain
I’ve never fully recovered. I’m left with exhaustion and my balance isn’t great. Some of the physical issues I still deal with include being unable to hold my head up, the minuscule amount of vision I have left is disappearing, and the amount of sleep I need is tremendous.
There are still times when I still struggle to accept my limitations and capabilities with certain activities, such as how far I can walk, how many aisles can I walk up and down in the supermarket, being tired from having long conversations with people (which is a shame as I love talking!) However, I find the trauma of brain injury far harder to deal with than being blind. It does take its toll, not only on me, but on my loved ones as well. And, even now, there are times when one of us feels the need to speak with someone who is ‘in the know’ and not emotionally involved. I’ve finally accepted that I need to find a way of moving through these dates and times and I’m currently looking for a counsellor.
How I remain positive
In the early days of recovery, I kept repeating to myself PMA: positive mental attitude. I believe this helped me to persevere on my long road to recovery, to put a reassuring spin on my situation, and to concentrate on the good things I have. I retaught myself how to knit, and now I knit squares which are made into blankets for a local charity group called The Big Knit. I have also found a love for skincare. Finding hobbies that bring me joy has helped me stay positive.
Additionally, I recently became aware of SameYou during my recovery. Your charity is exactly what survivors of brain trauma need. If sharing my story will help raise the much-needed funds and awareness, I’m happy to help.