Chris's experience of his sister, Nicola, having pancreatic adenocarcinoma. She was diagnosed in 2013.

1 July 2013

It started in November 2012, my sister, Nicola, began having certain symptoms. On a couple of phone consultations with her GP she was told it was the Norovirus, which at that time was quite prevalent. During Christmas dinner my sister never ate anything and was falling asleep at the dinner table, this was unusual but was put down to being run down from a bad bout of the Norovirus.

Growing concerns and receiving a diagnosis

On the 5th of January 2013 when seeing about her symptoms at the GP, she had various tests carried out. At this point she was noticeably yellow and being sick a lot every day.

There was concern with regard to the results of the tests, where she was admitted to the local hospital for further testing. On hindsight at that time all her symptoms were wholly indicative of pancreatic cancer. Various options were discussed such as gall stones however over a week later after being admitted to hospital and referred to various specialists we were called into a meeting with a Macmillan nurse. At this point we were told a tumour had been found but they were not sure exactly what it was and to wait for further results. A couple of days later we were informed of the full horror surrounding this tumour.

She was diagnosed with advanced adenocarcinoma pancreatic cancer with metastasis on the pelvis. The prognosis was very poor – 3 to 6 months. No surgery as it was too advanced and palliative chemotherapy.

‘I felt like I was living a bad dream’

Nicola was only 25 years old and had a beautiful daughter of 4 years called Ciara! They had never seen such advanced pancreatic cancer in someone so young. The world came crashing down on the whole family. Most of the time I felt I was living in a dream, a very bad dream.

Nicolas’ long term goal was to see Ciara go to primary school. This was over a year away but in the meantime shorter goals such as birthdays and other small events allowed her to work towards them and keep focused.

Nicola had become very unwell, it seemed like overnight. She had lost a lot of weight very quickly and was being sick upwards of 10 times a day. She couldn’t keep any foods down.

I took to Google (reputable sites). You have to be very careful what you read. This is when I found Pancreatic Cancer UK. At that point I did not know how much of a help their Specialist Nurses would be to the family and I.

Chemotherapy and its side effects

The treatment the hospital could offer was a chemotherapy called Folfirinox which would give her the best chance of halting the disease. Nicola was young enough to have this more aggressive treatment but unfortunately at that point not strong enough. This had to be our goal for her to get strong enough for the treatment.

In the meantime she was put on the chemotherapy gemcitabine.

The sickness, poor eating and weight loss was becoming very concerning. It took a lot of shouting and screaming to get this investigated unfortunately, not what you expect in such a situation. Pancreatic Cancer UK during this time were great though with both practical and emotional advice. About one month later she was diagnosed with a duodenal blockage which required a gastric bypass to allow her to eat better and stop the sickness which plagued her.

Due to the operation and blood issues the chemotherapy kept on being cancelled and Nicola couldn’t finish a cycle and was frustrated every time this happened.

Positivity and coping with pancreatic cancer

I really have to take my hat off to how positive Nicola was. Even after getting the chemotherapy she would fight through the side effects. The main one was tiredness but on th e whole she was ok after a couple of days.

Nicola would always want to go out with Ciara and the family and live life as normal as she could. She didn’t really want to talk about the future that much, just deal with the here and now. Was that such a bad thing? No I think that was the best way for her to deal with it, especially at such a young age.

Nicola knew if anything happened I would be there to help sort it out. We had always been close but lived a distance away but I had never felt so close to my sister to try and help her through it. In the same way I had never felt so helpless sitting watching her sometimes, I felt that I couldn’t do anything.

Nicola had an ‘ok’ couple of months with the painkillers and good anti sickness medication, she was doing a lot better than she had before. I was still looking for that miracle cure to come along but on viewing the statistics, which hadn’t improved in decades, I wasn’t positive. This is when I realised that it seemed to be the forgotten disease that has never had any real or successful research. Unlike with some other cancers where there are advertising campaigns, screening tests and pre-emptive surgery for high risk patients to name a few.

A testament to Nicola’s character and personality

With all the issues Nicola had with the NHS the hidden gems were the palliative and district nurses we came in contact with. They treated Nicola as if she was one of their own and nothing was a problem for them, right until the very end.

Nicola became too unwell and moved back in with our parents for support. I also stayed on a regular basis just to support her. I can’t imagine the mental torture she was going through, she didn’t want to talk much about it, just now and again. As I said, ‘We will do this at your pace and whatever you want; I’m here for you whenever, just ask’. I know she appreciated this and she knew there was no pressure.

With this disease at a late stage I have come to my own conclusions. If you get it then you can’t really do much about it. Just live life to the full everyday and don’t worry about things which don’t matter.

This really is how people should live their lives as you don’t know what’s around the corner but I suppose it’s not really always practicable. Although this really makes me question my own mortality and way in which I live my life. It makes you want to help other families who will unfortunately be in similar circumstances with this horrible disease.

Unfortunately Nicola passed away peacefully on the 2nd June 2013 surrounded by her family. It was a really hard fight she put up but this was a testament to her personality and character.

There isn’t a day that goes by where I don’t think about my sister. Also could I have done anything else? But I know no one could have.

I don’t want people to have read this and be completely disheartened, just do what Nicola did, fight every minute, have goals, do what you want to do, when you want to. Don’t put it off until tomorrow!

Fundraising for Pancreatic Cancer UK

Nicola’s family and friends organised a Balloon Race at Falkirk Football Stadium on the 8thSeptember 2013 to raise money and awareness for Pancreatic Cancer UK in Nicola’s memory. Pancreatic Cancer UK is very grateful for their support and very happy to announce that £2,021 was raised through this event. A huge thank you to everyone helped organise, was involved, bought balloons and donated.

July 2013