Tips for Head & Neck Cancer Patients
By Head & Neck Cancer Patients & Carers
This list is flexible so more ideas from head and neck cancer patients, carers and family may be added!
Do this in the comments area and use the area to ask question on this page.
Before reading, remember that this list is not meant to replace medical or dental advice. Do be in touch with your health care professional team if there is something here you had not considered to see if it IS suitable for you.
As we know from our experiences, head and neck cancer comes in many forms, affecting the short and long term ability to speak, eat, swallow, drink. It can affect our appearance and is more associated with depression than most other cancers. Below is a list of ideas we have gleaned from our Facebook group and from talks by health professionals.
Notice nature daily
To go outside, to look and get in touch with the bigger world along with noticing the intricacies of nature. The sky, the beach, a creek, mountains, the flowers in the garden, the changes seasonally. Look up, look around and breathe in what is different and wonderful about nature.
Some can be based on mindfulness: see 5 things, listen for 4 sounds, feel 3 different surfaces, smell 2 aromas, taste something or remember the taste of it.
Good old games and puzzles on your phone or tablet while you are waiting anywhere can help. Concentrating on “just one thing” is a great distraction.
Caring for a pet can help us through that lonely first year after treatment when we can’t work and are feeling low. A cat, a dog, a bird.
Educate yourself re head and neck cancer
When you are ready you might like to know more about head and neck cancer. Sometimes it can be very confusing as there are many sources for information. Asking your professional team may help set you in the right direction. Be aware of where you live (country of the world) and if the source of your information is relevant to you. Beyond Five is an excellent source of information. Australian but of universal relevance. Generally speaking, “knowledge is power” but make sure you are mentally ready before researching your cancer.
Education: for the learning and knowing of more!
- Lifelong learning enriches our lives. So this section is for “anything” you might want to learn about or explore in avenues on-line. It may be a course you always wanted to take and have the time now.
- It may be re-training for a return to work or a new role
- It could be, if you are at post-retirement age, a chance to share your skills and talents with others or to join a club or interest group.
- So many of these are around if you go searching on-line.
- If on-line is not your thing – the local newspapers and libraries often advertise classes. Offer to teach something you do well.
A 15 minute walk
Exercise is good for us but it doesn’t have to be intimidating. A 15 minute walk around the block is better than nothing.
One day at a time
Easy to write…harder to remember and live by for many of us. Always good to have this reminder to stop worrying about what tomorrow might bring.
Set small goals
- A daily plan is so helpful and if goals are your thing, add them
- Some goals can be linked to the every-day activities and can be checked off
- Getting up by ….(time)
- Having first meal (or supplement)
- Your morning routine: getting dressed for the day, having a plan of what needs catching up on and so on
- Going out somewhere, for a coffee, a walk, a shop, a browse, just for “going out” if you feel well
- Midday routine: lunch (or whatever it is for you), rest may be after lunch or meeting up somewhere
- Afternoon routine
- Evening routine
- Each of us has our own already somewhat flexibly made but for some, adding a time frame and reminder to our phone or computer can ensure we are not ‘idly’ getting ourselves caught up in fear, rumination and the like
Statistics are not predictors
Even if survival statistics seem to be against you, just live. Statistics look at the big picture and your individual course might be a lot better. “The median is not the message.”
Don’t shy away from psychologists
Having a cancer diagnosis of any kind, is a threat to our human existence.
Each of us may recall our reactions on hearing the news in the first instance and then other times as treatments started.
There are many reasons why it is good to share with a “talking and listening” professional including that they have no personal connection and that they are trained for this. “There is an intimacy in talking to a stranger.”
They will not tell you what to do or how but instead give you coping and “thinking” strategies.
Food Hints and Tips
- Add gravy to a meal of drier cooked ingredients
- Sour cream takes the sting out of acidic foods
- Add ice-cream, cream, custard or yoghurt to a sweet treat and it will ‘go down’ better
- Be aware of mouth design changes as some areas will be numb. Missing the mark leaves a mess. We have all done it!
- Eating something with a teaspoon is ideal when you cannot open your mouth or have no teeth on top and cannot bite
- A straw may or may not be helpful. It is not for someone without vacuum seal in the mouth post-surgery
- Be careful of HOT foods as the sensitivity in new or grafted skin is high. Better to let things cool right down
- Take a tablet inside some jelly or custard or yoghurt
- Grated items of food like apples & cheese go down well
- There are many sources for help and recipes on-line and with your professional team.
- Protein added in some form makes the meal better for health and recovery from surgeries and so on
- Take the directions on your food supplements & feeding regimes and follow them via the recommendations for your team
Join a support group
Some people are reluctant to join a group on the ground or online. All that negativity! Talking about cancer all the time! In fact, peer to peer emotional support can be extraordinarily helpful and even fun. People with the same disease share a strong human bond.
Use it or lose it
- Swallow something bulky every day if you are only drinking a supplement. Those swallowing muscles need to be exercised or they will atrophy
- Neck exercises are very helpful for our comfort
- Stretch your jaw every day of you have even a hint of trismus
Share your story
- The more we share our stories of head and neck cancer the more others will understand what has happened for us and to us.
- They will, in the right circumstances, become better self-educated to look for and notice any on-going symptoms for themselves and know how to find help via a GP, specialist or dentist.
Stories can be shared in a few ways:
- Being part of a support group – on-line or a local one for meetings
- Sending your story to one of the organisations that supports more knowledge of head and neck cancer
- Having a presence on social media: Facebook, Twitter, Instagram or a personal blog
- Head and neck cancer can be isolating so be out there at a level you are most comfortable with following your head and neck cancer treatments
- If you have always been someone to get out and about, you will find you may feel a bit reluctant or self-conscious at first, but then it will be fine
- If you have tended not to be one who is like this, then that too is okay. Mostly though, no-one needs to ‘hide away’ because of the effects
- It takes courage to be ‘back out there’ having a coffee (using a serviette or cloth under our mouths) and so on, but life is still there. Go for it
There is much to be said for the modern practice of keeping a gratitude diary but it IS sometimes a challenge to find it when you are a head and neck cancer patient or carer
These words may help:
“Gratitude isn’t about ignoring everything that could be improved; it’s about shining a light on what’s already working, which creates positive feelings about now while enabling positive plans for later. In a very real way, gratitude is the antidote to fear.”
Lori Deschene: Tiny Buddha: Simple Wisdom For Life’s Hard Questions.
P 252. 2018 (republish) Rockwell Publishing.