Vulnerability is not a choice.
It's a way of life with head and neck cancer treatment.
By the time you are reading this I will have just commenced my Camino Frances 22/9, heading over the Pyrenees and the Spanish Meseta.
While I am away I am opening up some of my more popular posts as I trek the 880kms and for the most part enjoy no computer and “official” writing.
Beun Camino
Housekeeping: Have you had enough water today? Go on, I’ll wait … and maybe put on some pants. This is likely a good post for practitioners new to the HNC scene and students studying in nutrition, dietetics, dental etc. The areas I discuss below all happened to me and I suspect happen to most HNC patients at some level.
I have no idea if just having a cancer diagnosis makes you more vulnerable, but I found head and neck cancer treatment not only humbling but opened up more vulnerability avenues than I experienced pre diagnosis.
What got me thinking about vulnerability was listening to Brene Brown’s audio book Daring Greatly. One of the reasons I enjoy bushwalking and hiking solo is the “time” it affords me to just listen to podcasts, audio books, digest and think about the content uninterrupted for up to 3- 4 hours … what luxury!
I find hiking with others, whilst enjoyable and a great way to really talk to someone and find out what’s going on in their lives, it also means you are not taking in the scenery, checking the map and or listening & learning something new, but listening to them and being very much involved in a conversation.
Side note: five years ago with my one and ONLY appointment with my radiologist, he said to me “now’s the time to study” make sure you read Brene Brown.
I remember thinking it was an odd thing to say given everything and anything he might have told me about Radiotherapy!
Who the hell was Brene Brown?
Vulnerability comes in spades with HNC treatment and I want to highlight some of the areas I personally found challenging alongside raising some of the lesser known vulnerability issues such as losing your voice box, or your whole nose.
Examples of vulnerability include sharing your emotions, talking about your mistakes, and being honest about your needs. Recognising why you might struggle with this can help you learn how to be vulnerable with trusted people in your life.
Just as a side note, you might like to know more about Brene Brown’s Shame resilience. I found it fascinating. I am not affiliated with any of the content. Check that out here …
Vulnerability in individuals during and after head and neck cancer treatment can manifest in various ways across physical, emotional, social, and psychological domains.
Here are some key aspects and I have experienced most of them. Presumably if you are a current patient or former patient you likely have experienced some of these too.
During Treatment
Physical Vulnerability with fatigue and weakness
Treatment often involves surgery, radiation, and/or chemotherapy, which can lead to severe fatigue and physical weakness.
Pain and Discomfort: I don’t know about you but I was a cocktail of pain killers most of the time and you may experience significant pain due to the cancer itself, surgical procedures, or side effects of radiation and chemotherapy.
Difficulty Eating and Swallowing: Treatments can cause mucositis, dry mouth (xerostomia), and loss of taste, making eating and swallowing painful and challenging.
In my case it manifested as dysphagia and it changes daily and with the weather.
Voice Changes: Radiation and surgery can affect vocal cords, leading to changes in voice or even loss of speech in some cases.
Infection Risk: Treatments can weaken the immune system, increasing susceptibility to infections.
Emotional and Psychological Vulnerability
Anxiety and Depression: Fear of treatment outcomes, recurrence, and the potential loss of normalcy can lead to anxiety and depression.
Body Image Concerns: Changes in appearance due to surgery (e.g., scars, loss of facial features) can impact self-esteem and body image.
Stress and Coping: Managing treatment schedules, side effects, and personal responsibilities can be highly stressful.
Social Vulnerability
Isolation: Physical side effects and emotional distress can lead to withdrawal from social activities and support networks.
Communication Challenges: Changes in voice and difficulties with speech can hinder social interactions.
After Treatment
Physical Vulnerability
Long-term Side Effects: Some patients may continue to experience fatigue, pain, and difficulties with eating and speaking long after treatment has ended.
Rehabilitation Needs:Physical therapy, speech therapy, and nutritional support may be required to regain function and quality of life.
In my case it’s the expense of constant neck massaging and deep tissue therapy. I am talking about tear producing massage and not the Bali beach massage with pedicure.
Emotional and Psychological Vulnerability
Fear of Recurrence: Ongoing fear of cancer returning can cause significant anxiety and impact mental health. Think we ALL know this one. Scanxiety as it’s known.
Adjustment Disorders : Adjusting to life after cancer treatment, especially if there are lasting physical changes, can be challenging.
Post-traumatic Stress: Some patients may experience symptoms of post-traumatic stress disorder (PTSD) related to their cancer experience. I did too I just didn’t realise it at the time, so be kind to yourself Yvonne, just maybe you can’t do everything like you use to.
Social Vulnerability
Work and Economic Impact: Treatment and recovery may result in prolonged absences from work, financial strain, and difficulties returning to employment.
Relationship Strains: The emotional and physical toll of cancer can strain relationships with family, friends, and partners.
Quality of Life Concerns
Overall Well-being: Managing long-term side effects, maintaining emotional health, and integrating back into daily life are critical for overall quality of life.
Support Systems: Access to ongoing medical, psychological, and social support is crucial for long-term recovery and well-being.
Addressing these vulnerabilities requires a comprehensive, multidisciplinary approach involving medical professionals, mental health specialists, rehabilitation services, and social support systems. Providing holistic care that addresses both the physical and emotional needs of patients can significantly improve their quality of life during and after head and neck cancer treatment.
I know this because like many of you, I need dry needling, deep tissue massage, help from my HNC nurse coordinator (ORN Protocol anyone?) answers to things that crop up that I literally do not understand.
Have I missed any vulnerabilities?
Want to find out how I started eating again after PEG Tube feeding for 15 months?
Eat Well.
It’s true! We get ‘so much’ we never expected with HNC diagnosis and treatments of all kind. I am 7+ years post diagnosis and the vulnerability never leaves about what happened. In fact for me it returns in some waves of ‘what the heck was that…having half my mouth removed?’ And it has this week…so I have to remember self compassion and kindness…and appreciation for how well I AM going!