This month’s blogger, Julie McCrossin, is an Australian journalist and broadcaster, she is also an oropharyngeal cancer survivor who was treated with radiation therapy and chemotherapy over 5 years ago.
For more about Julie’s diagnosis and treatment, watch the videos “Julie’s Story: Challenges and What Helped” from The Royal Australian and New Zealand College of Radiologists (RANZCR)
The most traumatic aspect of my treatment for stage four oropharyngeal cancer in 2013 was the immobilisation mask. I wore it every day for 30 consecutive days. My time alone in the bunker receiving radiation therapy was 20 minutes. The setting up period meant I was tightly secured by the head for up to 25 minutes each day. Prior to my first treatment session, I had never seen a LINAC or a bunker. I had never seen a picture or received an oral description of how the mask would be used or how I would be positioned. I was not informed about any options to help me cope prior to my first session. As soon as the mask was put on for the first time, I immediately panicked and asked the radiation therapists to take it off. They did so immediately. I then quickly reminded myself how many people were waiting outside and that I had been told that surgery would most likely eliminate my capacity to speak and swallow for the rest of my life. I was considered too small for robotic surgery at that time. I immediately asked the radiation therapists to put the mask back on. I told myself I had to cope.
After this first session, I left the bunker and hid in the toilet so that my partner of 22 years, Melissa would not see how shocked and distressed I was. We then went to our car where I sobbed uncontrollably for over 15 minutes. I then froze inside. I was not able to cry again, at all, over the next five years, until 29 December 2018. This is the day my 94-year-old mother, Marjorie died. Crying was a blessed relief.
I underwent four radiation therapy treatments in the mask before I went to the nurse and told her I was in serious trouble. I had asked the radiation therapists on the second, third and fourth treatments, to please speak to me and give me reassurance during my sessions. However, this never was successfully achieved. They seemed totally caught up in their essential treatments tasks. I told the nurse about my hot flushes, palpitations and sweating. She arranged for me to have mild sedation, four music tracks to play repeatedly so I could monitor the time and access to a clinical psychologist. The nurse also held my hand while I was fixed into the mask for the next three or four sessions which helped immensely.
Five years later, I have spoken to many head and neck cancer patients and multidisciplinary team members about the mask. I am the voluntary ambassador for Targeting Cancer, TROG Cancer Research and Beyond Five. These websites have excellent educational materials for head and neck cancer patients and families, including about the mask. They did not exist in 2013 when I was treated.
I have co-edited two Australian Editions of the Head and Neck Cancer Patient, Carer and Family Book in 2017 & 2018 with patient stories and articles by leading clinicians. My website has links to these.
How to help
1.Specialist Head and Neck Cancer Nurses.
We need to develop a cohort of specialist head and neck cancer nurses to support and inform patients and families before, during and after the treatment process. These senior nurses require accredited specialist professional development. They need to be available in the public and private sectors. They will be able to conduct research in partnership with the multidisciplinary team and hold specialist training and conferences in a recognised professional field of head and neck cancer nursing. I have met specialist head and neck cancer nurses at Chris O’Brien Lifehouse in Sydney and at The Leeds Cancer Centre in the UK. I spoke at the 2017 Patients Head & Neck Cancer Conference hosted in Blackpool by The Swallows Group UK charity. I was really impressed by the supportive role these NHS nurses played.
2. Visual Patient Education Using Models.
All head and neck cancer patients should have the opportunity to view a model LINAC with a patient in position wearing a mask BEFORE their first treatment. Medical models are used in heart surgery and orthopaedic and other areas for patient education. When one is overwhelmed emotionally & it is hard to absorb information, “seeing” is the best communication, in addition to text and audio. Models should be displayed in waiting rooms outside bunkers & used by team members prior to treatment. Dr Sean Geoghegan, State Director Radiation Oncology Medical Physics South Australia and I are working on a joint project to develop models across Australia. Here is a link to the UK Little LINAC model project run by the Institute of Physics and Engineering in Medicine.
3.Options for Mask Support
Patients should be offered options for support with the mask BEFORE the first treatment: such as music; mild sedation; “magic string” (A long, coloured piece of thin, soft material for the patient to hold. A support person holds the other end outside the bunker. This is used in Leeds to support & reassure); access to a clinical psychologist or a specially trained nurse; the chance to see and paint their mask with empowering images; (This is done in Leeds) and so on. It should be called a “safety mask”, not an “immobilisation mask”. Words matter.
4. National Best Practice Mask Education Guidelines
Currently, there is a wide range of inconsistent practice. The opportunities for professional, evidence-based pre-treatment education vary – not only between cancer centres, but within the same centre, depending on which staff member happens to be on duty. When I asked my team, why I had not been told what to expect with the mask – everyone thought somebody else would have told me. This hit-and-miss approach is leading to psychological trauma. Every other aspect of my care was professional and evidence-based. Keeping me alive was fantastic. My psychological health needed to be protected too.
Help us do better than this. We can do better than this.