After reading and talking to other families, we can now look back and say how lucky we were. Although we didn’t know it at the beginning, we were given the gift of time.
In 2005 at the age of 31, Cy went to his GP as he had repeated episodes where he couldn’t stop his right leg from shaking and he occasionally had dizzy spells. He was sent away with the diagnosis of being young, having late nights, not eating properly, and working long hours.
A few weeks later Cy had a major seizure at work, was taken to hospital and then advised to follow this up. Two weeks later, after a private scan, he was told he had a large astrocytoma that was inoperable due to it’s’ position in the brain and a craniotomy confirmed this. We were all so stunned that we shut ourselves away for a time, while we processed what we had been told.
Cy went for further opinions hoping that there had been a mistake, but then we came across an amazing specialist, Prof Brada, working at the Royal Marsden Hospital, and then the London Clinic who guided us throughout. Cy went on ‘wait & watch’, having scans every 3 months, and then every 6 months.
Once the seizures were mainly under control, our Prof (as we all called him) encouraged Cy & all the family to go out and ‘live’, which with the help of family and friends we all slowly did. With Profs blessing, Cy even resumed snowboarding, which he loved, with the proviso that he was never the last one coming down the mountain & sadly no ‘off piste’.
In 2009 Cy & his lovely girlfriend decided to get married and we had the most amazing day. Cy & his wife, Babsi then went on to have 2 beautiful children who we all adore.
With confidence coming back, we all spent lots of time together whenever we could and had many wonderful family holidays, but unfortunately in 2010 things began to alter, with new scans showing changes. Over time, Cy had radiology which caused cysts, Temozolomide chemo twice, PCV chemo, platelet transfers, PC chemo, steroids and lots of scans but he continued to work from home, against medical advice, running his own business, refusing to stop or try to slow down. Living in quite a rural area, his answer was always “No – I can’t drive and I can’t sit and watch TV all day. I like what I do” He never complained or asked “why me”, and after he passed away, some of his clients said they never knew how ill he was.
Cy continued to work from home until February 2015, when his health finally made it impossible to carry on. Babsi, his sister Leah, & Mum & Dad, were all with him when he lost his courageous fight in July 2015 at St Helenas Hospice in Colchester.
We would never have managed without the love & support of our families, friends, our Prof, District Nurses and all the staff at St Helenas Hospice. We have cried a lot, but we have laughed so much too, and we will always remember the happy times we all had together.
We have set up The Cy Lapwood Fund hoping that one day there will be a cure for this terrible disease, and if we can help just one person along the way then every penny is truly worthwhile.