Our growing reputation and accessibility mean that those facing Pancreatic Cancer themselves can ask us for information, advice, advocacy and other support. Using our experience as a family we are able to offer a telephone advice and support service, a face to face discussion, or advocacy on behalf of patients and families who may feel alone, uninformed and, frankly, scared. Year on year we see an increase in the numbers of people getting in touch to ask for help, to share their experiences, or offer their time and expertise.
Patient experience for those with Pancreatic Cancer is judged to be worse than for any other cancer in the UK (Pancreatic Cancer UK), and, worryingly, a significant number of people who have been diagnosed with Pancreatic Cancer, or their relatives or carers, say that they do not have enough information about the disease. Enquiries come to us direct from families, as well as from clinical staff, and from cancer support groups like Macmillan.
People often ask “What is it like to go through this and what can we expect?”
They want to have some understanding of the impact of a ‘Whipples’ operation (the procedure to remove a tumour from the pancreas), the often difficult decisions concerning treatment, help in managing symptoms like pain, depression and major nutritional challenges and, importantly, dealing with the emotions arising from diagnosis – these are all common issues faced by Pancreatic Cancer sufferers and their loved ones.
Whilst the Fund does not have direct clinical expertise, all of us have experienced the ‘journey’ and are able to share those experiences with others
If you would like to get in touch you can do so by emailing us at info@ecfund.org.
