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.