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Patient Voices


Digestive Cancers Europe believes that the patient voice is central to improving the patient experience. As experts in their own lives patients can provide insight into what it is really like to face a life changing disease and in particular colorectal cancer.

More and more we see patients becoming involved in initiatives aimed at improving health systems and we truly believe this to be the new age of patient involvement. However one of the most important roles for patients is to share their experiences and to provide hope to others facing similar challenges.

We want to hear your story. 

We hope that this section of our website will provide the platform and inspiration for patients/survivors to tell their own story. If you would like to contribute to this page please contact: Zorana Maravic at zorana@digestivecancers.eu

Barbara's Story

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No-one expects to get cancer. No matter what the statistics show, very few people relate the figures to themselves and, I must admit, it was the same for me. When I was given a prognosis of three to five months in November 2006, and advised to request early retirement, I must admit that I was totally unprepared. So finding myself suddenly in a hospital bed and talking about wigs was all quite alien to me. My independence had gone and I was being visited by my loved ones doing all they could but feeling helpless.

With all our hopes, contentment, feeling lucky compared with others and generally the positives that help you through cancer, we still had many major decisions to make. I was treated with 2 courses of conventional chemotherapy; the first, Oxalyplatin 5FU, did not work. After 4 treatments, my medication was changed to Irinotecan 5FU. Six treatments of this worked to a fashion but the effect was diminishing and side effects were increasing. I had Stage IV cancer of the colon that had spread to the liver and the tumour in my left liver was 15cm big. After discussion with my doctors, my surgeon said that he was prepared to operate if the tumour in my liver shrank away from the portal vein. He needed a clear 2cm to leave this vein intact before he could remove the tumour. Conventional chemotherapy had done all it could for me but not enough. I really had little chance.

We wanted to know what was happening in the wide world out there that maybe, wasn't happening in Worcester, our local town. Reading the internet, my family discovered there were two drugs, Avastin and Cetuximab, both widely used in Europe and America for treating my condition, with amazing results. I requested Avastin, along with Irinotecan and Capecitabine from my local Health Care Providers but they refused to provide it. It would cost us £21,000 for 4 treatments before possible resection and 4 adjuvant treatments were also recommended, included in the cost. 

This was a lot of money for our family. We had to consider that my husband, Mark, was having to take much time off work and I had already stopped working and had taken early retirement by now. My immediate thoughts were, 'Am I worth it? I am dying! Leave it for my family.' We had two sons. Jevan had just started his first job and Aidan was away at university. I felt it wasn't worth spending the money on me as there was no guarantee that the drug would work on me. 

But it would give me a chance.....

It was my family who were insistent; they wanted me to go for it. I must admit, it did not take too much persuasion for me to agree! and it made me even more determined to win my battle with the disease. 

After just two treatments, the tumour in my liver had shrunk by half. I had the four treatments prescribed and my surgeon was able to remove my ascending colon and entire left liver in one operation. 

My cancer did return in the lymph just a couple of weeks after treatment had finished, but another course of chemotherapy alone (Irinotecan 5FU), seemed to take it away as quickly as it came.
I have been in remission for 9 years and I have regular scans and CEA tests. I have often reflected on how lucky I am and I have also reflected on the unfairness of the system. I have put a great deal of energy into campaigning for access to medicine. Regarding lifestyle, I still lead a full life and I have not cut out anything in particular. If anything, I am far more physically active.

I know that Avastin does not work for everyone, but it worked for me. If we had not decided to pay for it ourselves, I would not be alive today.                                

Barbara Moss

Barbara Moss has written a book about her journey through cancer.
If you would like to read it, it is available for purchase at 
http://www.amazon.co.uk/Whos-Been-Peeping-My-Bed/dp/1905795351
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Digestive Cancers Europe
Scots House
Scots Lane
Salisbury
SP1 3TR
United Kingdom
Tel: +44 1722 333 587
info@digestivecancers.eu


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