My Story - by Barry Duckett
My Story - by Barry Duckett
In 1995 I was diagnosed with Chiari Malformation which is a malformation of the brain that causes obstruction of cerebrospinal fluid. Symptoms can include headaches, fatigue and impaired coordination. I’d had ongoing problems with my health and in 2008 I was told that these were caused by water retention. For months I was receiving treatment, but it didn’t seem to be making me any better. Like most people I trusted my first diagnosis and went along with the appointments, check ups and procedures that I was told would make me better.
In 2010 I had an experience that changed my life forever. I went to the bathroom and was shocked and frightened by what I saw.
I had an appointment at the National Hospital of Neurology and Neurosurgery and explained what had happened and the doctor referred me immediately to University College Hospital for further tests. Within days I received the life shattering news that I had cancer. I had been wrongly diagnosed with water retention and had received treatment for a condition I didn’t have, losing precious months of treatment for the cancer that I did have.
My whole life stopped in a second, I was in a daze. Everything in my world froze. When I told my wife, she thought I was making it up, we just couldn’t believe that this could happen to me. My two sons were panic stricken. ‘What are we going to do without you dad, you’ve been around my whole life’ said one of them. I didn’t have an answer for him. My wife of 43 years did not know how to handle the news that we might not have longer together. The cancer was bladder cancer, carcinoma in situ grade 3, which is not easy to treat or contain.
Treatment at UCH started within weeks, I had various treatments and my body responded positively to BCG in my bladder. At first I was embarrassed at being examined intimately on a regular basis, having tests and things inserted into me – but the embarrassment soon wore off as I realised that this was saving my life.
Two years on I am still here and at the end of October 2012 I was told I was in remission, which is the best news that I have had in a long time.
I still have what I call ‘sad days’, on these days I pick up my guitar and play and it brings me back to myself. The worry never goes away, but I try and stay positive and raise as much money as I can for cancer related causes. Through the Rotherhithe Festival, which is a community festival which I run every year, I have so far raised over £10,000 to go towards cancer causes, including over £4,000 for the UCL Hospitals Charitable Foundation Cancer Centre Appeal and over £1,400 for the Teenage Cancer Ward in the new Cancer Centre so that they could buy something that they wanted for the patients.
I am very involved in my local community in Rotherhithe, and have lost many of my dearest friends and family to cancer, including my mother, and the past two Mayors of Southwark. I see it as my responsibility to raise awareness about cancer, and to encourage people to get a second diagnosis. ‘Push, push, push’ for answers is what I tell them, because without your health there is nothing else.
The doctors at UCH have been absolutely amazing, they have literally saved my life, and I think the Cancer Centre is a fantastic facility which I use regularly in my frequent visits to the hospital.
As long as I can breathe and get out I will be fundraising, I’ll still be campaigning when they put the lid on me.
Since Barry shared his story with us in 2012 he has continued with characteristic courage to fight for his health. In May of 2014 Barry underwent a Radical Cystectomy which is the removal of the entire bladder, nearby lymph nodes, part of the urethra and nearby organs that may contain cancer cells. As a result of this process cancer cells were detected in his urethra, so Barry is still attending regular follow up appointments at UCH, where he praises the Stoma nurses who treat him.
In spite of his ongoing battles Barry has continued to raise money for UCL Hospitals Charitable Foundation and in September 2014 Barry brought in a further donation of £1,000 for which we are extremely grateful.
Barry’s continuous and unwavering support over 4 decades for his local community as Chair for Canada Estate Tenants and Residents Association was recognised this year when he was awarded a well deserved British Empire Medal for services to the community in the London Borough of Southwark. The British Empire Medal is a British medal awarded for meritorious civil or military service worthy of recognition by the Crown, and Barry says he is honoured to have received it.
We spoke to Barry in September 2014 and he continues to be upbeat and positive despite the debilitating recovery process following his recent surgery, and is resolved to keep going with his fundraising. We wish Barry all the very best with his recovery and would like to say a huge thank you for all of his support and fundraising.