Head and Neck Cancer Support Society Blog Submissions

Blog submissions reflect the opinion of the writer.  The Head and Neck Cancer Support Society (HNCSS) does not necessarily recommend or endorse submission content. Readers are advised to consult with their treating healthcare team as appropriate.

If you wish to submit your story to be included on our blog page, please email info@head-way.org . Your submission will be reviewed by the committee and once approved, will be posted to the website.

Benefits of Exercise For Head and Neck Cancer Patients

My name is Adam Brown and thank you for letting me share my story. Exercise has been the key to my recovery.

In June 2015 I noticed what I thought was a canker sore on my tongue. I finally visited a doctor at the local MediCenter and was advised a referral was necessary to see a cancer specialist.
Ouch. Cancer “really….”
I was referred to the U of A Ear, Nose and Throat Clinic. A PET scan was ordered, which came back positive and confirmed cancer (squamous cell carcinoma) on my tongue and was told surgery would be required.

During the next 3 months I had lots of consults, I still remember the 3 hour meeting with the Ear Nose and Throat Nurse Navigator, who described what the surgery would entail but as soon I heard “cut out my tongue and cut open my neck” I completely tuned out. It all seemed like such a blur. There were various other appointments, a month and “mouth” full of appointments.
Then finally surgery day arrived……
A 14-hour surgery at the U of A Hospital to replace 40% of my tongue with a tissue harvested from my forearm. This included the skin, muscle, veins and the radial artery.  Skin from my thigh was grafted to cover the area removed. Also, 1/3 of the lymph nodes were removed from my neck. Then a 10-day post operation hospital stay followed by two weeks of Home Care. Everyone was wonderful but let me assure you the U of A hospital is not a “bed and breakfast” experience.
However, this was the beginning of my post surgery exercise program. The very next day after surgery they had me up and walking around the ward. No laying around, it was “up and Adam”. Besides the walking they started me on some elementary strengthening exercises.
Simple hand movements, basic at first, trying to make a fist and touching my fingers with my thumb, and I left hospital with specifically designed home program to insure proper daily exercise.
Soon after, I started 30 consecutive daily radiation sessions at the Cross Cancer Clinic, brutal, but with a lot of hand holding, finally managed to ring the bell.
As soon as radiation was finished, I meet the rehab specialists at the Cross Cancer Clinic. They measured how wide I could open my mouth and designed exercises to help with my jaw stiffness and to help ward off trismus. Also my SAN or Spinal Accessory Nerve had been compromised so I couldn’t lift my right arm. The SAN nerve communicates with the trapezius muscle and without it working it is very difficult and often impossible to lift your arm above shoulder height. I also had little head rotation, neither back or forth nor up or down.
The Cross physiotherapists started me on a special treatment program, exercises designed for shoulder muscle strengthening and neck mobility. At the time they seemed so basic, 1-pound weights and the red resistant strap but actually very effective.
That carried on for 5 months-Two hours a day twice a week.
Next stop was Dr. McNeely’s Cancer rehab clinic at the University of Alberta and I was enrolled in the TARGET Program. Developed by Dr. McNeely, as a study to record the benefits of doing exercises and stretches specifically designed for the rehabilitation of the shoulder and neck coupling it with a full body strengthening workout. With other head and neck cancer patients we started with warm up exercises, like running in the tread mill, then neck stretching, and shoulder manipulation, followed by specially designed exercises so we had a complete work out. I loved the neck stretching, it brought such relief and after the workouts was exhausted but probably ended up in the best shape of my life. She kept testing us so you could easily see how far we had come.
Why was it so great?
For head and neck patients, our necks typically feel like we have a 6-inch rubber band constantly pinching and strangling our necks. The stretching brings relief by loosening and releasing the scar tissue.
The shoulder manipulation and exercise program helped build strength back to the shoulder. As we talked about earlier, the surgery compromised the SAN nerve. Because of the exercise I have 100%, actually maybe 120% range of motion in my shoulder.
Without these exercises my neck would have stiffened up completely and my shoulder would permanently hunch forward. Since then I have continued exercising through the Alberta Cancer Exercise (ACE) program and gaining strength every session.
Also, besides the physical strength component of exercising there is another huge side benefit, the mental side. Simply said, exercise makes you feel good and boosts your mental wellbeing. I was often accused of too much chatting and not enough exercising. Evidently they don’t consider “running” your mouth as a legitimate exercise, but there is no doubt exercise inspired my recovery and is really a potent antidepressant. The patients I worked out with are still my friends today.
Is maintaining an exercise regime time consuming and tough? Yes
Is it worth it? Absolutely
There is no question that exercise has helped my recovery in so many ways. Of course it has made me stronger, a lot stronger, both physically and mentally but exercise has also prevented a life of a disability, permanent stiff neck and shoulder deformity and pain. You can never really compare each other’s cancer journeys but some of my friends who haven’t been able to exercise suffer from shoulder pain and all the issues that surround it, sleep deprivation, endless medical appointments, pain killers, and a tough quality of life.
No question, without regular exercise my life would be very different and I would recommend to all head and neck cancer survivors to try and maintain an exercise program.

Tapping into the Healing Power of Support Groups.

I have experienced the healing the power of belonging to a peer to peer support group. After my radiation and chemo treatment for tongue cancer my speech language pathologist suggested I join a group for cancer patients with swallowing issues and I am so glad that I took advantage of the opportunity.

I was already writing a blog about my tongue cancer journey for friends and family, so I knew how important it was to talk about my experiences and get feedback from those who know and care. The blog had healing power for me and so did the support group.

I really appreciated relating my story to people who were experiencing the same things I was, but I think listening to other patient and survivors’ stories was even more powerful. We followed and supported each other’s progress week after week.

I participated in this group for about a year before I moved to a smaller city. There is no support group where I live on Vancouver Island. However, as an author promoting my tongue cancer experience book, No Quit in Me, I have had the privilege of being invited to participate in meetings with a variety of head and neck cancer support groups. With each group I been touched by the stories and the level of sharing and caring that the members deliver for each other.

Support groups work. The Alcoholics’ Anonymous model of sharing your story and hearing others’ stories has healing power. Head and neck cancer support groups are each slightly different and guided by their own principles but essentially members get together on a regular basis to share their experiences, inspire, learn from and emotionally support each other.

What the participants have in common is that we are the survivors of cancer and the treatments required to remove cancer: surgery, radiation or chemotherapy. We are all dealing with harsh, damaging, painful, frustrating, confusing, conflicting, unpredictable experiences and feelings.

No one’s experiences are the same, but they are all variations on pain management, difficulties with swallowing, dry mouth, speech impairment, food choices, weight loss, memory loss, brain fog, sleep issues, fatigue and quickly changing symptoms. Each person’s story is often a litany of issues occurring on many levels at the same time. The frustrations are sometimes overwhelming, but the same person at the next week’s meeting may well be remarking on their ability to overcome everything and meet their challenges.

Hearing other patient’s stories can be inspirational. Knowing what someone else has endured gives you faith that you can do the same. And you feel you are not alone in your frustrations.

It is comforting to be talking to people who can relate to what you are going through. You feel heard and understood. You also feel safe talking about your very personal experiences.

The meetings are also an opportunity to ask for advice from those who are ahead of you in their healing journey and to be offering advice to those who began their treatments after you. Everyone seems to be willing to share what has worked for them.

Clearly these groups support patient recovery and adaptation. Clinics that treat head and neck cancer patients seem to have discovered the healing power of support groups and are providing trained social workers or psychologists to facilitate them.

The Head and Neck Cancer Support Society was recently founded by members and supporters of a local head and neck cancer support group in Edmonton Alberta.  This Society is championing peer to peer support groups and I support their efforts. Join them at www.head-way.org.

I also encourage every head and neck cancer patient and survivor to join a group.

If you are a patient or survivor and do not have a group yet; find one. You will be in good company. If there isn’t one where you live maybe the clinic where you were treated at has an online support group service. Ask the team that cares for you.

John Kuby

Author of “No Quit in Me: My wild ride with tongue cancer” www.noquitinme.ca

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