It is a great honour and pleasure to be a Patron for Beyond Five.
As a survivor of head and neck cancer myself, I am deeply committed to doing whatever I can to bring evidence-based information and sources of support to the attention of head and neck cancer patients, family members, friends and multidisciplinary team members.
Diagnosis, treatment & recovery
I was diagnosed with stage 4 oropharyngeal cancer in mid 2013. I had cancer in my tonsils, the back of my tongue and the side of my throat. I was successfully treated with 30 sessions of radiation and four sessions of chemotherapy.
My recovery was based on two key factors in addition to the excellent treatment, pain relief and hope provided by my medical team: a radiation oncologist, a medical oncologist and a head and neck surgeon.
Firstly, I was lucky to have a loving, supportive, long-term partner, Melissa and two caring adult step-children, Luke and Amelia. We had a tight circle of very helpful, practical friends. My partner was able to take paid and unpaid leave from work and devote herself to my care. We had savings which were also crucial in enabling her to care for me.
The children provided significant practical and emotional support. Amelia was a medical student at the time and she helped us read the materials from Cancer Council NSW (this was before Beyond Five) and write down useful questions for the doctors. I honestly believe I may not have survived without this highly motivated circle of love, practical support, transport and help to eat.
Secondly, I had the support of a multidisciplinary team. My speech pathologist and dietician kept me eating, swallowing and speaking for as long as possible. I did lose the capacity to speak for about eight weeks. However, I worked with a speech pathologist throughout my treatment and for several months after treatment to recover my voice and my capacity to swallow. During treatment and its immediate aftermath, I lost 20kg.
However, I was able to maintain a safe weight without PEG or nasogastric tube feeding. Often tube feeding is necessary. However, I was overweight to start, which helped, and I was highly motivated to keep swallowing food supplements as well as soft foods. I had two crucial nurses who made sure I understood what was happening and who helped me solve any problems as they arose by connecting me to the right team member quickly.
The radiation therapists kept me safe during my treatment in the bunker on the LINAC or radiation machine. I did not have surgery, but I understand people who do may need physiotherapists to restore flexibility of movement in the neck and shoulder area.
The challenge of the mask
However, I did have one significant concern. I don’t feel I was adequately prepared for the challenge of the mask. A head and neck cancer patient must wear an immobilisation mask during radiotherapy to keep absolutely still.
It is an essential safety device but I found it a very challenging experience. I asked for help from the nurse in my bunker after four sessions. I immediately got help. I began to take mild sedation before each session.
I listened to the same four songs which helped me know how long the session would last and it soothed me. The nurse held my hand while my mask was put on for two or three sessions as I adjusted to the experience. I also began to see a clinical psychologist and she gave me useful things to think about to calm me. All of this helped me and I did not miss any sessions, despite my initial distress.
I believe all patients should be provided with information and options for coping strategies before their first radiation session. I believe the information materials of Beyond Five can assist patients to be better prepared for the challenges of treatment, including the mask.
Prior to diagnosis I had been repeatedly attending my GP complaining of an ear ache, a sore throat and two lumps on my neck. I was taking soluble pain relief twice a day but I wasn’t sick. I was never referred by my GP for any tests or assessment by a specialist. Finally, I wrote to an ear, nose and throat surgeon who I had previously seen about another health issue. I wrote to him about my symptoms and he agreed to see me.
He immediately diagnosed my cancer and confirmed the diagnosis with a biopsy the next day. I believe that it is very important to work with all the professional organisations for general practitioners, including Primary Health Networks, to provide the latest information about the diagnosis, treatment and recovery of head and cancer patients. Primary care teams have a vital role to play throughout our patient journey.
My cancer was caused by HPV, the Human Papillomavirus. While tobacco and alcohol are the primary causes of head and neck cancers, an increasing number of people are developing cancer as the result of this sexually-transmitted virus. Thankfully most Australian boys and girls are now receiving the HPV vaccine at school at the ages of 12 or 13.
However, there are still many older people, like myself, who missed out on the vaccine. Over the next decades many more Australians will be told the same distressing news that I received in 2013: that they have cancer and it is caused by HPV.
I believe Beyond Five has a valuable, national role in raising public and professional awareness about the signs and symptoms of head and neck cancer and its causes, including HPV. Without exception, my wide circle of friends were absolutely astonished that I had throat cancer.
I had not smoked or drunk alcohol since 1979. No-one, including myself, was aware that HPV could cause head and neck cancers, as well as cervical cancer. Nor did they know HPV can cause cancer in the penis and anus. There is much work to be done to improve awareness of HPV among the public and health professionals.
Monitoring and checking
Once my radiation treatment and chemotherapy were completed, I began a new relationship with my two main doctors: my radiation oncologist and my surgeon. I have been seeing one or other of them every three months for various tests. They also examine me physically. They feel all around my neck with firm hands. They put a tube with a camera down my nose into the lower part of my throat. You cannot see this area through the mouth. They check to see if any cancer has come back.
I can see these images on a screen in my surgeon’s rooms. I have seen the large, lumpy cancer tumour inside me and I have seen the clean, smooth healthy tissue after treatment. I continue to see my surgeon at regular intervals. My radiation oncologist has retired. When I heard he was gone, it felt like a loss in my family. Cancer is a team sport and you get very close to your team members.
Patient education and support
It is now four and a half years since I was diagnosed. I recently had a PET scan that confirmed I am still cancer free. I have found that getting involved in patient education activities has helped me to recover emotionally from the frightening experience of having a life-threatening illness.
There is a link on the Beyond Five website to some brief videos on the Targeting Cancer website in which I tell my story of diagnosis, treatment and recovery. There is also a link to the Head and Neck Cancer Patient Book that I co-edited in 2017 with two patient groups: The UK Swallows Group and Head and Neck Cancer Support Australia.
A second edition of this book will be published in 2018. I am also now a member of two Facebook sites for head and neck cancer patients which help me to share recovery with people who understand. The focus of both groups is very much to encourage people to talk to their clinical teams, take evidence-based treatment paths and to engender hope.
Why Beyond Five is so important
There are many long-term challenges for head and neck cancer survivors. That is why Beyond Five is so important. It offers information for the long term, as well as for the acute, initial period.
I will mention three areas of common concern. Firstly, many patients, like myself, have long-term dental needs. Treatment often damages our salivary glands in the short, medium or long term. With limited saliva, our teeth get into trouble. This involves the need for on-going dental treatment which many people find too expensive to maintain. Secondly, some people have on-going challenges with speaking and swallowing.
This interferes with social and working life and we need extra professional support. Thirdly, some survivors and their key family members experience on-going emotional or psychological distress. Access to professional help from a psychologist or psychiatrist is not always available for geographic or financial reasons.
There is plenty for Beyond Five and its supporters to do. I look forward to making my contribution to this valuable work.
Julie McCrossin, broadcaster, journalist and head and neck cancer survivor October 2017.
First published at: https://www.beyondfive.org.au/.