Support in the Community
The Cambridgeshire based Acorn Cancer Support Group were recipients of the Fund’s first ever award. The Group, whose aim is to alleviate the physical and emotional distress of cancer patients and their carers, meets at Huntingdon, St Ives and Ramsey and provides a range of services; including therapies and bereavement counselling as well as social events and trips.
Those suffering from Pancreatic Cancer, and their carers, are amongst the growing membership of the Group.
“The grant from The Elizabeth Coteman Fund, has made a wonderful contribution to the work and sustainability of our Group. Our services are for patients and relatives and carers, which continue beyond bereavement should this occur, providing support and comfort to family members.” – Gordon Dyer, Acorn Cancer Support Group
Support For Clinical Trials
Our growing financial support for those attending clinical trials is designed to help with costs to patients and families, boost the outcome of trials and, where this is possible, see direct health or quality of life benefit to patients. One bereaved lady wrote to us following receipt of a grant from the Fund:
“Thank you for your cheque. Sadly, my husband passed away recently and, as you can imagine, the last few weeks have been rather difficult. I would like to say, however, that I am sure the trial drug given at the hospital gave him extra time which enabled him to have three weeks with his new granddaughter, which gave him so much joy.”
Patient and Family Support
We support Pancreatic Cancer patients and, or, their loved ones for as long as they need our help. Some of our support is ‘light-touch’ – just an exchange of texts or emails. Some people like to have a chat on the phone, or meet for a coffee, and others ask us to accompany them to hospital appointments. Our approach is friendly and informal and seeks to match each family’s different needs and anxieties. Our contact with, and support for, patients and families is underpinned by our wide experience of ‘the journey’ and of the NHS. Through our contact and friendship we are able to discuss with people all aspects of pancreatic cancer and help them consider the best ways of managing things. Our principal aims, throughout, are to make sure that nobody goes through this alone, and, crucially, to find ways of maintaining, and where possible, enhancing quality of life.
One daughter, who contacted us over concern for her father who had recently been diagnosed, wondered if a second opinion would be helpful. Needless to say, we were not able to advise on clinical issues but we gave her the confidence and the ‘words’ to have another conversation with her father’s consultant to get more clarity on what was happening. Before our conversation with her ended she said:
” I was angry when I called you, and felt that our family had been let down by the system. Your advice helped me to put things into perspective and be clearer about what I must do to support both my Dad and my Mum. You told me more about Pancreatic Cancer and its impact than any of the doctors; I wasn’t sure about calling you but am so glad that I did.”
Another daughter, who we had met with several times, wrote to advise us of her mum’s passing and said:
“Although you never got to meet mum I talked to her a lot about you and she appreciated the support you have given me. I would like to keep in touch with you and although you didn’t get to know mum, Dad and I would very much welcome you if you wanted to come to the funeral” – we attended the funeral and have met separately with the Dad and daughter since then to provide further support.
So Where Does The Money Go?
Many of the requests we receive for help come via referral from specialist clinical staff around the region who are involved with patients and families as they battle with pancreatic cancer. These requests may come in the form of help to attend crucial clinical trials, which, in addition to supporting vital research, can improve quality of life and (usually short-term) survival. Other requests are made for help with living expenses or equipment when people, on their own or with partners or spouses, with little income, are fighting this dreadful disease on their own.
Examples of where we have provided financial support for patients attending clinical trials:
“I am sure the drug given at the trial gave James extra time to have three weeks with his new granddaughter, which gave him so much joy” – the wife of a patient who subsequently lost his battle with pancreatic cancer.
“When we received the news that Colin had terminal pancreatic cancer, we were absolutely devastated and could only think of how we were going to tell our two boys aged 13 and 16. He managed to complete the six month trial and the last scan showed that the tumour in his pancreas is less dense – I hope and pray he will continue to stay positive and fight this horrible disease” – the wife of a patient who subsequently lost his battle.
Examples of Our Financial Support:
“I have just been diagnosed with pancreatic cancer and have only just started a night job at a supermarket – they do not pay me sick pay until I have been with them for 6 months and then they only pay after the first 4 days. What with spending 5 days in hospital for the diagnosis and chemotherapy, hopefully starting in the next week or two, things are going to get very tight as I am on my own, having lost my husband to lung cancer 4 years ago” – this patient, whose prognosis was extremely poor, was supported with travel and living expenses.
Another patient with a very poor pancreatic cancer prognosis wrote: “Thank you for your kind and generous cheque, we all had an amazing time and it was lovely to see my children, and grandchildren all together and enjoying themselves” – our grant paid for family tickets as part of a holiday and theme park experience in Blackpool; possibly the last time the family will all be together in this way.
The wife of a terminally ill pancreatic cancer patient contacted us to ask if we could assist in getting her hospital-bound husband to his daughter’s wedding, which we did, by liaising with the hospital and doctors, and arranging and paying for a staffed Red Cross ambulance to collect and return him to Addenbrooke’s Hospital. She wrote – “Thank you for everything you did for us, the planning went like clockwork and Ray was able to sit in his wheelchair to give our daughter away, we still can’t thank you enough.”