In 2009 at the age of 49 my husband, Cyril Haggar was diagnosed with a meningioma brain tumour. Getting to the point of diagnosis was gruelling for us and our three young daughters.
Repeated visits to the doctor, mis-diagnosis with sciatica, debilitating seizures, the feeling that no one was listening and there was no one to turn to were just part of the story. The practical difficulties and financial implications of being unable to work added enormous stress to a family already under pressure.
The tumour was non-cancerous, sometimes termed ‘benign’, but it was a term that meant little when that same tumour was life-threatening and any potential surgery carried such huge risks that most surgeons were unwilling to attempt it. As the tumour was not cancerous we were not able to access any support from charities in that field. We felt we were fighting this battle alone.
Only personal tenacity, and reliance on our credit cards, enabled us to get the information we needed through private referrals to experts. Cyril had two major operations, which thankfully successfully treated the tumour.
Phase two of the challenges facing our family then started: picking up the pieces. We found that the impact of a brain tumour is not just the immense medical aspects, it’s everything else that goes with it.
- Relying on benefits
- The impact on the children
- Losing your driving licence
- Dealing with frequent appointments
- Living with a long term medical condition
- Risk of seizures/epilepsy
- Challenge of living with an uncertain future
- No longer living the independent life we had before
- Emotional and relationship difficulties
Survivorship became our focus. The challenges continued and continue to this day. But we are no longer alone.
We set up the Hillingdon Brain Tumour Group in 2009 as we never wanted anyone else in our community to go through the same nightmare alone. We were determined to support others and help save other lives as we had saved Cyril.
Our first meeting of the Hillingdon Brain Tumour Group was amazing. The emotion and the relief we saw on people’s faces as they walked in seeing that we understood, we cared, we could help. There were tears, hugs, a family, a band of brothers and sisters was born! This band grew and grew.
Where there is light, there is hope: where there is hope, there is life.