Where do I begin to tell the story of Head & Neck Cancer Support Aotearoa?
It’s a private Facebook group with members from all over the world but based in Aotearoa/New Zealand. The admin team is 10 strong but only a few of us are active admins while the rest help us with graphics and advice.
Most of us are in Auckland but we keep in touch through our own Admins Facebook group and by occasional in-person meetings for those who are in or passing through Auckland. We have become friends. and our admin page will often follow our non-HNC lives.
We started in June 2016 and are thinking of broadening our support by forming a charitable organisation which will run alongside the private Facebook group. The group will always be our heart and soul, but it would be nice to reach out to people who are not on Facebook.
Australians are a big part of our group! We promote Beyond Five and can’t wait to meet you all in Sydney on 12 June. Meeting Facebook friends in person is one of life’s joys.
My part in all this is as one of the founders, a driver and mother hen. We don’t have a boss; we have a team with everyone adding their own skills, knowledge and experience.
As for me, I am a head and necker for life because of a history of reccurrence and some long-term side effects. I had a small tongue cancer in 2007, then a bigger one in 2009 and finally a new primary in my cheek in 2014. I’ve lost a lot of teeth, have bad trismus, a severed nerve and scars galore. I can’t eat solid food, I dribble … Apart from that I’m fit and well and hope to walk a half-marathon for the Cancer Society in November.
And as an ex-teacher I like to research, simplify, write and inform.
I have loved my time in HNC Aotearoa. The people. The camaraderie. The way we have stuck to our guns and kept our advice and information careful and evidence based. It’s a joy to interact with fellow humans who reach out for peer support when they need it and give it back in spades when they are called upon.
This is teamwork and always has been. Tammy, Toni, Olwen, Maureen, Nicky, Narelle, Adam, Liz, Cosette, David. We often dress ourselves in burgundy but we’re the All Blacks of HNC support.
Note: Closed Facebook groups are now referred to as “private” groups. Anyone can apply to join our group. You might be a head and neck cancer patient, a family member, a friend or a health professional. We have members from all over the world with our top three cities being Auckland, Christchurch and Sydney.
Coping after head and neck cancer treatment
You emerge from surgery and radiotherapy as I did in 2014 and you’ve lost teeth, you’ve got trismus or limited mouth opening, you can’t bite and have minimum chewing ability, you dribble when you eat, your mouth is crooked and your chin and neck are scarred. You’re scared of getting cancer yet again as you’ve had it three times already!
Here are my tips
Join a support group. Look on the Beyond Five website under Support. Auckland had a monthly meeting. From that we started our Facebook group for peer to peer support and it has given me and others so much comfort and so many coping tips.
Get help. See a Cancer Society or hospital psychologist. “There’s an intimacy in talking to a stranger.”
Keep fit. Even a daily 15-minute walk is therapeutic. I’ve found being super fit at 73 a source of health and self-esteem.
Practice mindfulness. The easiest way for me has been to go out each day, take a photo of nature and share it on social media.
Don’t let your cancer or disabilities define you. Plunge more powerfully into the things you love and can still do. Use whatever skills you possess, make things. I offered to do the newsletter for the support group using my old forgotten English teacher skills. Any form of creativity or craft is good for the soul.
Accept. That is my philosophy. Fight for your health and survival but accept that shit happens in life, cancer is random and there’s no point feeling resentful that it’s happened to you. HNC is one of the many ways that life can kick us in the pants and we just need to work around it.
Pet therapy. When I had my last cancer in 2014, I was living alone and decided to get a pet when I recovered. I thought that even if I ended up unable to speak after my surgery, I could still have an affectionate cat or dog. While I was in hospital and having radiation, I spent may happy hours looking up kittens and puppies online. Looking after the needy kitten I eventually purchased took me out of myself during my recovery!
Seek a social network. Loneliness and isolation can be terrible after HNC especially if you are already living alone or have a sick partner. I had recently moved to a new town and had to work hard to socialise myself. I joined groups that had lots of very old people in them who might not look askance at scarred little me. I joined SeniorNet, worked in a Hospice Shop and joined walking groups for retired people. I joined U3A. Gradually it worked and now I’m somewhat in demand for my skills and enthusiasm. It feels good.
Volunteer. Helping others floods our brains with endorphins. Be the listener, be the one who understands how tough life can be. Find a mission. Don’t overdo it!
Value yourself. You’ve been through fire and you have a lot to contribute to those around you. Stand tall.
Facebook group: https://www.facebook.com/groups/HNCSupport.Aotearoa/
Facebook group blog: https://hncsupport.blogspot.com/
Personal blog: https://hncmaureen.com/
Go to session details: PANEL 2: Living well during the 18 months after treatment
Go to session details: PANEL 3: Living well up to 5 years & beyond