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 two courses of conventional chemotherapy; the first, Oxaliplatin 5FU, did not work. After four treatments, my medication was changed to Irinotecan 5FU. Six treatments of this worked in a fashion, but the effect was diminishing, and side effects were increasing.
Researching my options.
We wanted to know what was happening in the wide world that maybe wasn’t happening in Worcester, our local town. Reading the internet, my family discovered there were two biological drugs, both widely used in Europe and America, for treating my condition, with amazing results. 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 had little chance.
I asked for the biological drug, along with Irinotecan and Capecitabine, from my local Health Care Providers, but they refused to provide it. It would cost us £21,000 for four treatments before possible resection, and four adjuvant treatments were also recommended.
Money or health?
This was a lot of money for our family. We had to consider that my husband, Mark, had to take a lot of 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. Jeevan 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.
My family was 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.
Successful cancer treatment.
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 nine years (as of 2024), 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. I still lead a full lifestyle, and I have not cut out anything in particular. If anything, I am far more physically active.
These treatments do not work for everyone, but they worked for me. If we had not decided to pay for the treatment ourselves, I would not be alive today.
Barbara Moss is a patient advocate and a stage 4 bowel cancer survivor.
Here book, which tells her story in more detail, is available on Amazon
