Posted on Friday, August 25th, 2017 at 10:31 AM by IK K
I am a Stage IV bowel cancer survivor of 10 years. You may be shocked at what I am about to say.
It wasn’t long after I was told I was cancer free, over 2 years after diagnosis .. I was practising a presentation for MPs in Westminster.. My son, Aidan asked me, before he did a skydive for Bowel Cancer UK , ‘Mum, are you pleased you got cancer?’
Wow! What a question! And why did he ask me that!
I would have to tell you a bit of my story, and I have written a book about it called, ‘Who’s Been Peeping in my Bed?’
Ten years ago, after a series of misdiagnosis, 6 years from my first consultation with my GP, I was sent for a blood transfusion because I was anaemic. It was then that I was told I had cancer. A few days later, ‘terminal cancer’ and that I had three to five months to live. It was as sudden as that.
Researching options with my whole family, we asked for the medication that reduced my tumour and allowed resection of my colon and liver. Even after recurrence, I have lived on another 8 years and still running! Bowel Cancer UK helped me enormously.
In 2006, the UK was a good 5 years behind Europe. The NHS refused me Avastin that was already being used in America and Europe. With no hair, undergoing chemotherapy, I had to stand around a table with a dozen men in suits, who I felt were playing God with my life. I presented my case to ask for the drug through the NHS but I was told ‘I was not exceptional’ and I could not have it.
With difficulty, we paid for the Avastin which shrank my tumour by half after four treatments and this allowed me to have an operation. I know I was lucky because there were no biomarker tests offered at the time.
My life, I accepted was to end, suddenly had a new lease and I have felt guilty ever since because I was among others who had far less chance than me to survive. Was it money that saved my life? Was it my ability to research on the internet and ask questions of my oncologist? Do others die because they feel afraid to ask questions?
What a difference my extended life has made for my family. I said from the start, if I die, I die…but my family are the people who live without a Mum, a wife, a loss. I have valued my time, spending weeks in France with my loving husband, Mark; I have seen my two sons graduate; and I have been with my family to celebrate my Mum’s 90th birthday. She is now 96!
If I was to die tomorrow, I would now be ready, but not without a fight! Perhaps it is my guilt, but I have felt a compulsion to give back something of what has been given to me. I have spoken out publicly in the media and my own case was used as an example to change the law in the UK regarding access to drugs. I must add that the situation has since gone backwards so there is always a voice from the patient that needs to speak out.
Barbara’s story doesn’t only happen to Barbara and doesn’t always have a happy ending. As a teacher before I had to retire I feel, ‘we could all do better!’
Cancer patients should not have to fight bureaucracy as well as their cancer.
And if I can help to do that, then my answer to Aidan’s question, ‘Mum are you pleased you got cancer?’