Swallows Head & Neck Cancer Support Group Registered Charity Number : 1149794
Total Page:16
File Type:pdf, Size:1020Kb
Australian Edition The Swallows Head & Neck Cancer Support Group Registered Charity Number : 1149794 Support for all affected by HEAD & NECK CANCER Patients, carers & family members Head & Neck Cancer Support Head and Neck Cancer Support Chairman’s Statement Head & Neck Cancer patients have unique problems such as Dry Mouth, Swallowing, Eating and many other issues, it is so “It was a life-changing experience for me important worldwide we come together as ‘one to connect via social media with Chris voice’ and share our experiences to help Curtis from The Swallows in the UK. We others. shared our experiences of head and neck cancer and discovered a mutual passion It is my Dream to have a worldwide patient for improving the support for patients and ambassador programme that allows patients families affected by this tough illness. Chris and carers to talk, support and signpost other is a catalyst for action and collaboration likeminded people to services, medicines and across the world. Soon he had connected treatments that are available. me to another survivor, Marty Doyle from Head & Neck Cancer Support Australia in Following on from our successful launch of the Brisbane. All the way from the Blackpool, Patients book here in the UK I am so pleased Chris has encouraged, guided and that with the help of Marty and Julie we have supported us to produce this Australian managed to produce the Australian edition. version of a similar book in the UK. The We all hope you enjoy reading the many primary purpose of this book is to give stories in the book. encouragement and hope to people with a Talking to both Marty and Julie over the year diagnosis of head and neck cancer and has been a great honour and we have shared their families and carers. It will also be many an idea and with these two at the helm of useful for professional development in Head & Neck Patient Ambassador in Australia multidisciplinary teams. It contains articles H&N cancer will change for the better. by doctors, nurses and allied health professionals. We want to raise the profile of head and neck cancers because we need funding for research to improve our treatment, survival and quality of life. However, the most important part of this Chris Curtis book is the patient stories. Our voices are World H&N Cancer Ambassador/Chairman rarely heard. We hope sensitive health 24/7 Support line: professionals will use these stories to improve services and support. Thank you +44 7504 725 059 so much to Chris Curtis and The Swallows For more information call: for this significant contribution to patients and their families in Australia. +44 7779 169 833 ” www.theswallows.org.uk Julie McCrossin Head and Neck cancer Survivor. www.facebook.com/theswallowscancersupport @swallowsgroup Contents 4. Who are the Swallows? 45. Phychosocial Aspects 5. Patron’s Statement 46. I’m Still Standing 6. Foreword 47. Things happen for a reason 7. We are all in this together 48. A cancer researcher’s journey 8. Oscar’s Story 49. Swallowing & Speaking Problems 10. Resilience 50. When is your dentist your best friend 11. A mother of 4 51. A New Zealand Story 12. Mindfulness and Cancer 52. HPV p16 14. I’m Still Going Fishing 54. It’s better to get help early 15. Oral & Maxillofacial Surgeons Outlook 55. My Story 16. We’re here to help you 56. HPV-Related Oropharyngeal Cancer 18. A Winning Battle 58. Trust and Friendship 19. A Carers Story 59. Head and Neck Cancer Support Network 20. Wesley Centre 60. What is a speech pathologist 22. Physiothreapy 61. Trans Tasman Radiation Oncology Group 23. The Neckies 62. Diet & Nutrition 24. Smell the Coee 64. My glass is always full 25. It even happens in the bush 65. Beyond Five 26. Celebrity Story 66. Useful Websites 27. CUP 28. Oral health during cancer treatment 30. A Nurse’s Story 31. You’ve been great thanks 32. If not for the nurses I don’t know what I would have done 33. Laryngectomy Story India 34. Losing your sense of smell 35. Occupational Therapy 36. Laryngectomy Story Australia 37. Even on the Gold Coast 38. Bravery Unmasked 39. Hyperbaric Medicine 40. Coping as a carer 41. Radiation Oncology 42. The Big ‘C’ Picked Me 43. Life with a feeding tube 44. Head and Neck Cancer Support Group Head and Neck Cancer Who are the Swallows? Support We chose the name ‘The Swallows’ because second Wednesday of the month. It is an many head and neck cancer patients have opportunity to meet other like- minded people problems with swallowing, during and and share experiences. following treatment. What do we do? We are the patient and carers Head and Neck • Help each other and anyone else who is Cancer Support Group Charity based in the affected, directly or indirectly, by Head & Neck UK but now reach out to all other parts of the Cancer globe. • One to one or group support • Be available in Clinics to help patients and We offer our Patient/Carer support line 24/7 carers and will signpost if that’s what people want. • Advise on locating reliable literature, The Charity is run by patients, carers, family information and locally available resources and friends, so everyone understands the • Signpost links to other groups in different problems when you are diagnosed with Head areas and recommend trusted websites for & Neck Cancer. people at home How did it all start? • Raise funds for items to help both patients In 2010 a small group of patients started to and carers meet to discuss how they were dealing with • 24/7 help line answered by patients and any issues and to share stories. A lovely lady carers, offering a like-minded person to talk to called Wendy Hepworth (patient) led the group QUEEN'S TOP HONOUR FOR THE with the help of Jo Ashton, Clinical Nurse SWALLOWS HEAD & NECK CANCER Specialist in the Blackpool ENT department. CHARITY Then early in 2011, with the help and vision of The Swallows Head and Neck Cancer Support Chris Curtis the group achieved full-charity Group are proud to announce that they were status. awarded “The Queen's Award for Voluntary The charity will be forever grateful for the initial Service (MBE)”, the highest honour for foresight and work Wendy and Jo put in during Voluntary Groups. 2010 to get the group started. This award is a tribute to a great team of past It is important to say that while the charity now and present volunteers, trustees and patrons helps with Awareness, Signposting, who have given support to those affected by Campaigns, Research and Fundraising it will head and neck cancer here in Blackpool, the never lose the reason it all started in 2010 and Fylde and across the UK. that is “Supporting patients and carers locally, Chris Curtis, Chairman nationally and now throughout the globe. The Swallows Head & Neck Support Group Our patient and carers meeting is held every Charity 4 Head and Neck Cancer Hospital and Princess Alexandra Hospital. Princess Alexandra Hospital also held free Oral Support Australia Examinations. - Patron Statement The Support Group along with Cancer Council Queensland also ran the first Head and Neck Marty Doyle Cancer Forum which was attended by medical specialists, allied professionals, patients, Following my treatment of SCC with an carers and family to discuss experiences and Unknown Primary in 2004, I looked around for the latest support available. support from others who had been through Since then I have set up Head and Neck Head and Neck Cancer Treatment and found Cancer Support Australia to join together all none in Brisbane. I brought this to the attention support groups across the country. Last year of a friend at Cancer Council Queensland and we had events in Brisbane and Adelaide and they jokingly said “Why don’t you start your this year there will also be events in Sydney own Support Group”. So I did. and the regional areas. Over the last 13 years myself and a core group I connected with Chris and the Swallows on of fellow survivors have developed awareness Facebook some years ago. We kept in touch of Head and Neck Cancer and held Support and last year Chris invited me to submit my Group Meetings monthly so that anyone who story for the UK version of this book. Earlier this has just been diagnosed, is going through year Chris suggested we do one in Australia treatment or is dealing with the many side and I jumped at the chance. I started to effects of the treatment can join in a compile the stories then he introduced me to conversation about their experiences in a Julie in Sydney and we have all worked closely positive safe environment. We also invite, together to bring you this Australian Edition of regularly, Medical Specialists and Allied the Head and Neck Cancer Patient, Carers and Professionals to be part of the meetings, so we Family Book. can all learn from each other. This book will bring together the Head and Over the years I have reached out to other Neck Cancer Community in Australia and New areas of this vast country to see if we could all Zealand; the Medical Profession, Patients, support each other, exchange experiences Carers and Family members so we can all and have a common message and we have understand how to support each other, slowly built a strong and caring network. exchange experiences and develop a In late 2014 I started to think why don’t we set common message. up an awareness day in Brisbane? I thought why not July (It’s fairly quiet in Australia from a Health Awareness perspective).