A Mother’s Shared Tale of Brain Tumour

Yesterday I met with a lovely lady I have come to know through our daughters’ shared illness. We chatted over coffee whilst looking out over a choppy sea, through the rain- spattered windows. Our daughters have brain tumours.

They are beautiful young adults in their 20s, not children, which means we have quite unique issues. We talked about how much to ‘interfere’ in their lives with an illness which will eventually take them from us. We talked about their long operations, the huge scars on their heads which will remind us always of what has happened to our, once perfect, babies. We talked about their recoveries and how very upsetting it was for us both to see them so unwell and helpless. We talked about the ‘not so visible’ scars that they carry but no one will see but us, their mums, who see everything that has happened to our girls. We talked about their radiotherapy and their bravery. How they lay in a huge machine alone with their head trapped in a hideous mask while radioactive beams penetrated their gentle skin and travelled deep in their skull to zap at the nasty visitor in their brain. We talked about their young lives and how much love we have for them.

Both girls were diagnosed in 2014 and underwent surgery at Hurstwood Park Neurological Hospital by the wonderful Mr Sorin Bucur. He is our super hero. (It is common to assign super hero status to the neurosurgeon that successfully operates on a family member) In this case, he removed most of the tumour for each of our daughters but had to leave the rest as it was in a position which would cause enormous damage and life changing effects. Her daughter’s is across and between the frontal lobes; my daughter’s is deep in the temporal lobe close to the brain stem. We are both experts in neurosurgery and the tumour which has changed our lives forever. The terminology, the prognosis, the treatment, we have intimate knowledge of now. This knowledge helps us to stop feeling helpless.

brain tumourWe discovered so many similarities as we sat with our coffee. We both have loving husbands who live this new life alongside us, share our fears and are a great comfort to each of us. Our girls both have a younger sister, who have, and still do, suffer in their own ways. We have good friends who can imagine how it must feel, but being able to share our feelings as mothers is a wonderful gift we now have. How lovely for us to be able to share our experiences with someone who truly knows!

Our daughters had been sharing their experiences in The Brain Tumour Charity’s Facebook Support Group for some time, live only 20 minutes from each other but had never met. I had organised a ‘Bandanas for Brain Tumours Tea Party’ in our Guide Hall on the 3rd of March for the charity as part of Brain Tumour Awareness Month and we arranged to meet each other then. It was lovely to finally meet in person at a happy event.

The Brain Tumour Charity is an enormous support for us and for others. I am a member of The Brain Tumour Charity Research Involvement Network group which sends us research proposals from scientists seeking funding which we read and respond to according to our personal experience. This, for me especially, is an enormous source of comfort as I read amazing developments and investigations which may benefit our daughters and so many others.

During that coffee chat yesterday, we shared very personal feelings and experiences in our very similar situations. We agreed that quite difficult and unhappy circumstances can also bring happy outcomes. We will keep talking and sharing. Talking helps, talking always helps.

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