In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
Here is Carol’s story…
“When Carol passed away, I was shocked at how many people develop brain tumours and how many of them are children. I have since visited the Brain Tumour Research funded research centre in Portsmouth and discovered how underfunded research into brain tumours is and the cost of everything – particularly all the extremely complex, technical pieces of equipment…
“I have chosen to support Brain Tumour Research as my charity of the year and would like to be able to sponsor a day or MORE of research and put the Tangent logo and Carol’s name on the Wall of Hope and help to build on the number of brain tumour research centres throughout the country.”
My sister, Carol, loved life. She had a great sense of humour, was light-hearted and open-minded. She loved a joke and loved to party. She was also a sun-worshipper and loved going on holidays.
Then, in 2000, Carol collapsed at home. One of her twin sons (who were both 32 at the time) had popped round to visit and found her lying on the floor in the kitchen. She was taken to hospital and a biopsy revealed that she had a glioblastoma multiforme. It was at the back of her head and was inoperable. The neurosurgeon described how it branched out like a tree. She was given a prognosis of just six weeks, which turned out to be exactly right. Our dear Mum never got over it.
A few weeks after the diagnosis, my husband and I were due to go away on holiday, so, of course, we were going to cancel it, but Carol insisted that we went away because, in her words - she wasn’t going anywhere; she was going to be fine. She was always thinking of others. I spoke with her just before we went on our holiday and while we were away we were given the news that she had gone into a coma so we came straight back. I never got the chance to hear her voice again.
Carol was nursed at home by her sons and partners. All the family and friends came in and out of the house on a daily basis. In turn they sat with Carol chatting and laughing. She died at home too. For the last 10 days, when Carol was in the coma, she could still hear things and would squeeze our hand when we were talking to her or flutter her eye lids. It was a nice way to go – so much better than being in a hospital and all wired-up which I know she never wanted…
When the doctor came to tell us that Carol was actually dying, we found Mum cuddling her on the bed. I really felt by then that, for Carol, passing away was the best thing for her as she had deteriorated so quickly. When she finally went it was very peaceful. And Carol still looked like Carol at the end – I was so grateful for that. She just looked like my sister, but with beautiful nails. Carol had always bitten her nails, but while she was in a coma, they had been allowed to grow.
Amazingly, Carol had made a living will (which made clear she didn’t want to be kept artificially alive) before she was diagnosed and had also organised her funeral. I believe she knew she had a terminal illness, but she never let on to any of the family. We knew she often suffered with headaches, but she would put this down to stress at work and having to work nights.
Her funeral was very emotional, particularly with the music Carol had chosen: Simply The Best by Tina Turner, Jennifer Rush and The Power of Love, and When will I See You Again by The Three Degrees.
Since Carol died, I have also lost my mother and my two brothers, including my twin brother. I miss them every day, of course, but I also believe that life is for living. Sadly I have learnt that life is far too short. I try and make the most of each day and am grateful for living and loving. There are always people that are a lot worse off, in spite of the tragedies that have befallen my family.
Carol loved animals and loved walking in the country. She particularly loved robins and I have a robin which comes and sits right up by my kitchen window and helps me in the garden. I like to think this is Carol who has come back as a robin.
After Carol passed away, I looked into brain tumour research and was shocked at how many people develop brain tumours and, alarmingly, how many are children. I have since visited the Brain Tumour Research funded research centre in Portsmouth and discovered how underfunded research into brain tumours is and the cost of everything – particularly all the extremely complex, technical pieces of equipment.
I have recently become President of the National Association of Tangent Clubs – Tangent is a social networking organisation for ladies aged over 45 and part of the Round Table family of clubs, together with Round Table, Ladies Circle and 41 Club. I have chosen to support Brain Tumour Research as my charity of the year and have told my ladies that I would like us to be able to sponsor a day or MORE of research and put the Tangent logo and Carol’s name on the Wall of Hope and help to build on the number of research centres throughout the country. http://www.braintumourresearch.org/sponsor-a-day
One thought that remains with me is that Carol, like a lot of women, may have failed to recognise early signs of the onset of the illness. I am convinced that early diagnosis could well have offered her better prospects of treatment.
I would also support better training for GPs so that they can diagnose/recognise the systems in the early stages.
Sue Marlow - May 2012