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Helen Setterfield's Story

Helen Setterfield, a retired school teacher, lives in Belfast with her husband David. She has three children Andrew, Stephen and Kathryn as well as five grandchildren. She says:

Nowadays I spend as much time with my family as possible and help look after my grandchildren. I cherish every moment with them as 17 years ago my life changed forever.

I was having difficulty swallowing for some time and knew something wasn’t right so I went along to my GP. He sent me along for a scope test and everything was fine, but as I was having problems, the doctor decided to call me back in a year to do another one.

That year, I went for my scope and the registrar saw me and said everything looked fine and they would see me again in another year. But the following week, I got a call from my GP on a Friday to say the hospital had been in touch and I had to call the ward on Monday.

He said it was probably nothing to worry about but I knew they wouldn’t want to see me that soon if everything was okay.

I couldn’t settle at home and my daughter called the ward right away and the registrar who had seen me answered the phone and said to come straight up.

He explained that they had spotted something in my biopsy and wanted to do further tests so I needed to be admitted on Monday. Of course, that was a long, difficult weekend for everyone as we all worried about what the tests would reveal.

I was in hospital for a week and had all sorts of horrible tests. Eventually I was told I had oesophageal cancer and there was a tumour in my oesophagus. We were all numb with shock, but a strength takes over. I just wanted to be well again and have the operation. It involves the oesophagus part of the stomach being taken away.

Not every patient will require this type of surgery but it was necessary for me, and I spent 10 days recovering afterwards in hospital. On Christmas morning, the consultant came around and said he had a present for me — I had the all clear and was now cancer-free. That was the best news ever and I was allowed go home to be with my family. That was a very special Christmas and we were all very thankful. I am lucky as I was diagnosed and treated early but I know the statistics and it could have been a very different story.

Now, I’m chairperson of  OGCancerNI which aims to help patients on their journey from diagnosis through treatment and to help to raise awareness of the signs and symptoms.

Having oesophageal cancer was life-changing for me as it’s a chronic condition.  I will have to live with the after-effects for the rest of my life. I have difficulty eating certain foods so I need to be careful that nothing gets stuck when I’m swallowing. Since I was first ill, I’ve been in hospital many times to have a procedure on my throat. At night I have to sleep on a raised bed with four pillows. But this is a small price to pay and the alternative is unthinkable. You just adapt your life and change.

The most important thing is to stay positive and I had great support from my family and friends. It was like role reversal in my house with the children looking after me and telling me what to do. I couldn’t have got through this without them and my husband.”

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Information for Supporters

OGCancerNI were unfortunately informed about a cyber incident involving Beacon, the third-party system that we use to help us manage our donors' and supporters' information. Beacon published its Final Cyber Security Incident Report on Thursday, 3rd September; for further information, see https://www.beaconcrm.org/incident-report.

In August OGCancerNI reported this matter to the Charity Commission for Northern Ireland as a serious incident. We're sorry this happened. We want to explain what we know and what it may mean for you.

What Happened?

Beacon informed its customers that an unauthorised third party had gained access to its systems and that data held within the system may have been accessed and copied. The incident occurred within Beacon's systems, and OGCancerNI itself was not individually targeted. Beacon CRM holds 1,500 charity accounts; all have been impacted.

What information may have been involved?

This information may include your name and personal contact details, donation information and information contained in records or attachments held within our Beacon database.

Please note that we do not store any bank or payment details in Beacon, nor do we store any specific clinical information. However, we may record you as a patient or a volunteer.

What has OGCancerNI done?

The Trustees have been working to establish exactly what happened and the potential impact on the people whose information we hold.
We have reviewed the information provided by Beacon and the Charity Commission, sought independent professional advice, and reported the incident to the appropriate authorities.

We have engaged an appropriately qualified Data Protection practitioner and have assessed the potential risks and have taken immediate steps to prevent further unauthorised access.

We are also reviewing our own procedures and our continued use of Beacon.

What should you do?

We recommend you remain alert to unexpected emails, text messages or phone calls.
Do not click on unexpected links or provide personal information to anyone.

If you receive a communication claiming to be from OGCancerNI and are unsure whether it is genuine, please get in touch with us directly using our usual contact details.

At present, we are not aware of any evidence that your information has been used fraudulently.

We understand this information may be concerning. OGCancerNI take the trust placed in us very seriously, and we are very sorry that information we hold about you may have been affected.

If you have any questions or concerns about this incident or the information that OGCancerNI holds about you, please get in touch with us at [email protected] or by phone at 07568157450.

We will continue to review the situation and will provide further information if anything significant changes.

With best wishes

The Trustees
OGCancerN

Read Beacon's final incident reportClose