Maggie Shapland had retired in 2013 after a 40-year career as a database consultant and developer at the University of Bristol Computer Centre and continued to be busy with volunteer work on heritage projects. It came as a complete shock when she was diagnosed in October 2016 with Stage 4 metastatic pancreatic cancer at the age of 70.
‘I was very fit and my health had always been very good,’ said Maggie. ‘All I had was heartburn, there was no weight loss. No one could believe I could look and feel so well with metastatic cancer and had only been given a few months to live‘.
‘My partner of 14 years was devastated, but fortunately we have many friends he was able to turn to for comfort. We were married soon after the diagnosis in December 2016, in a joyous, if unconventional event. My sons were clearly upset, but supportive, as were my brother and sister. I was determined to keep strong for everyone, and to keep on with my heritage projects and drive my vintage cars as much as possible, to show to people that I am still enjoying life‘.
‘Due to the fact that I was physically fit enough to withstand the side effects, I was offered FOLFIRINOX rather than GemCap, as there was a chance I would live longer. The chemo course was between November 2016 and May 2017, although the dosage had to be reduced several times due to side effects and the cumulative effect was more than I expected.’
Maggie’s book The ups and downs of the Clifton Rocks Railway and the Clifton Spa was published in December 2017, but around this time her blood tests started to show some worrying signs and Maggie began to lose weight.
‘A CT scan in March 2018 showed that although the pancreatic tumour was still stable, the liver metastases were growing and there were new tumours on the lymph nodes. I started a six-month course of GemCap on 30 April 2018. I was now also diabetic (type 3) – a side effect of the cancer. However, I needed to gain weight to keep my strength up, so take metformin with every meal, as well as insulin on treatment days as the steroids send my glucose levels very high. I am also on blood thinners for the rest of my life as a result of having two blood clots – another side effect‘.
‘After three months the metastases on my lymph nodes had vanished, the liver metastases were disappearing and the pancreatic tumour had shrunk by half. By December 2018, after six months of treatment, my condition was stable.’
Although Maggie is not as physically fit as she was, she has organised successful open days for the Clifton Rocks Railway, and is working on the Brunel Swivel bridge and a new book on the Nailsea coalfields. She is also maintaining her passion for vintage cars and is booked to give talks as far ahead as September 2019.
‘I am determined to live life to the full, although I do get a bit tired sometimes.’
‘I am really glad there are finally Precision-Panc trials open in Bristol, since all too often they are too far away and at only one site. I am glad there are no placebos in Precision-Panc and it will be fantastic if I can get on these trials when my situation changes.’
It was a great shock to John Currie’s family when he was diagnosed with pancreatic cancer in November 2015 at 62. His daughter Janice shares his story.
‘Dad had what would be classed as a really good healthy lifestyle,’ said Janice. ‘He regularly cycled and was very fit and healthy. He had ongoing thyroid problems, but these were well controlled.’
‘In October 2015, Dad began to get tired and thought a holiday would help. The following week he became jaundiced, was admitted to hospital through A&E and diagnosed with inoperable pancreatic cancer.’
‘The prognosis was three to six months and Dad had eight months, almost to the day. An excellent team of district nurses provided support and at the end, Marie Curie nurses helped us with overnight stays, for which we were extremely grateful.’
‘Initially, Dad had a stent fitted to ease the jaundice and went on to have a drain inserted to help with fluid collection. This allowed Dad to be at home, which was very important to him. He chose not to accept palliative chemotherapy, which we respected.’
‘During the eight months, Dad did have some good times. He even managed a small cycle and saw family and friends and his pain was really well controlled throughout. At the beginning, changes in his condition were visible monthly, then weekly, and finally, daily.’
‘It was really difficult as a family. It came as a total shock, but as time progressed, the reality began to settle in. Dad’s attitude, faith and approach to the diagnosis was without a doubt very helpful and he tried to make things as easy for us as possible. Time became very important – time to accept, say goodbye and move forward, which Dad was very keen for us to do.’
‘It is a real privilege to be involved in some part in Precision-Panc’s vitally important research as it begins to offer hope and a future for people who are diagnosed with pancreatic cancer. I am incredibly proud of the people who have registered to participate in Precision-Panc clinical trials and of the talented researchers and medics who are determined to take on pancreatic cancer.’
Paul Taylor was a fit and healthy 36-year-old and for 20 years had led an active outdoor life as a countryside ranger and tree surgeon, so it was a complete shock when he was diagnosed with pancreatic cancer in June 2018.
Paul and his partner Charlotte had been together for 18 years and had been planning their wedding for August 2018 when he became jaundiced in May. ‘It started with me feeling slightly sick but nothing that I would worry about. Then I started to lose my appetite and after a short time I noticed that there was slight yellowing of the eyes. This escalated until I had complete yellowing of the skin and wasn’t eating or drinking anything. In the toilet my stools were pale, floated and seemed greasy. My GP made an emergency hospital appointment, but before I could attend, I collapsed and was rushed to A&E in an ambulance.’.
‘The doctors at my local hospitals seemed to have given up on me, but Charlotte is an amazing woman and found out about the Precision-Panc trials. We asked to go on a trial and knew we were in the right place when we met the team.
‘I received no chemotherapy before starting the trial. I had a stent fitted to my bile duct and had the port fitted for my fortnightly treatment that began in September 2018. This involves a long day at the Christie hospital in Manchester. I normally arrive at 8am for blood tests and to talk to the doctors about my side effects and any issues I might have.
‘After a couple of hours, I make my way to the chemotherapy unit where I have infusions of Abraxane and Oxaliplatin, which take around 4-5 hours to infuse. After this I am fitted with a chemotherapy pump containing Fluorocilin that I take home and it slowly infuses over 46-hours, after which my local district nurses remove the pump. The whole process is painless and the team around me is very helpful.
‘The process has been tough, but everyone has been honest with me and listened to my wishes. There are things no one can prepare you for with cancer treatment, so I expected ‘surprises’ around how hard it would be at times and what side effects I would get. Of course, I don’t want to have pancreatic cancer but, apart from this, I wouldn’t change the way things are going in this trial. I’m currently feeling fine and in a happy place mentally.
‘Short term side effects can last for a week to 10 days and include feeling sick, more severe tiredness, aching, loss of appetite, loss of taste around drink and food. Longer term symptoms are mainly the tingling and numbness in my hands and feet.
‘I’ve learned that it’s important to take breaks from the treatment to recharge the batteries. A break allows my taste to return, energy levels recover slightly and level out. It also helps with my mental health and mood. I arrange short breaks away during these times to maximise the enjoyment.
‘I hope the trial shows the genetic links that can point to better treatments and even prevention. Anything that can help other people diagnosed with this condition is a good thing. I want the suffering of pancreatic cancer to become a thing of the past.’