Patient and caregiver stories

Learn how understanding CRC is critical and how it can affect one’s daily lifestyle.

‘In 2011, I was diagnosed with colorectal cancer (CRC) after a continuous problem with blood spurts from the anus. My Consultant estimated that my odds of survival into 2012 were 50 percent, an unsparing assessment to me as a biostatistician. An intensive course of targeted radiotherapy was followed by major surgery and the fitting of a colostomy bag. There were many subsequent complications but there were no conclusive signs of spread of the cancer. In 2013, the bag was removed and remission continued until the present day. My family history suggested a genetic link. Further research led to my joining the NI Cancer Research Consumer Forum which promotes new research into the diagnosis, prevention and treatment of all cancers. In particular, I was made aware of the groundbreaking work on personalised medical approaches to CRC being developed at Queen’s University, Belfast by Professors PATRICK JOHNSTON and MARK LAWLER.

A current major initiative is the MErCuRIC project which is pan-European and is seeking to develop dramatic new gene led treatments in order to cure the most pernicious types of CRC. The Chief Investigators want to incorporate the patient perspective. As someone in remission, I am very encouraged by such involvement and would ask others to join us for tumours know no borders.’

Ed Goodall

‘I was diagnosed in December 2012 following colonoscopy after 7 months of various investigations for weight loss, headaches and then vomiting. I had bowel surgery in February 2013 and liver surgery 3 months later. Thankfully both consultants were excellent and very pleased with the outcome of my surgeries as my prognosis had been very dire. I then had 3 different types of chemo over the next 4 years and the last one before the trial was Lonsurf®.

Going on to the trial means you are back to hospital appointments, procedures and tests. A big reminder of cancer! It becomes quite an intense part of your life. At the start of the study there were biopsies and an overnight stay but now I know I generally now have a visit once a week. The upside of this is you are monitored so much – so if anything changes you know it’s going to be picked up, and if I don’t feel well I know I can say that. I have a PICC1 line for blood samples. I feel tired but it’s a general tiredness, it’s not like the fatigue I’ve had from chemotherapy before. A rash has been the most surprising side-effect of the treatment for me. The tests and biopsies have been grand.

Everything about the study was explained, nothing is hidden. It’s very open. My husband has been with me a lot. We have joked that at the end of this we should go and do a degree!

The doctors explained everything and the nurses have been brilliant. The staff are so good. When you are very ill you realise how important staff are and what a difference it makes when they are compassionate.’

Esther Harding

1 PICC – Peripherally Inserted Central Catheter (inserted into a vein)