I Gained Valuable Skills Being a Caregiver

by Cameron Von St. James (shares his story of care-giving to his wife who battled cancer.)

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I never knew much about the type of cancer known as mesothelioma until my wife
was diagnosed with it in November of 2005. I will never forget the day we sat across
the desk from the doctor as he told us about malignant pleural mesothelioma and
what that diagnosis would mean for my wife, Heather.

This news caught us off guard. We were new parents to a lovely daughter named
Lily and we were in the process of planning Lily’s first Christmas when we received
her diagnosis. What we thought would be just minor exhaustion and illness from her
being tired all the time suddenly turned into a life-threatening form of cancer. We
were stunned and unprepared for this news to say the least.

The realization that I would be Heather’s caregiver settled over me and I looked at
my wife as we heard the doctor talk about the disease. I could see terror and worry
on her face and I knew I would have to take control. The doctor told us about our
treatment options and he stressed that we really needed to see a specialist who had
experience in working with mesothelioma patients.

We decided our best treatment plan for Heather was to take her to Boston so she
could be part of a reputable mesothelioma program with a doctor who had extensive
experience in treating this disease. All I could do was pray that this man in Boston
would be able to help my wife.

I suddenly found myself with an ever-increasing list of things to do. From taking care
of Lily, trying to work at my regular job, and getting Heather back and forth to doctor
appointments, I was totally overwhelmed. Making endless travel arrangements and
taking care of Heather at home also became regular parts of my to-do list. My to-do
list sometimes seemed more than I could handle.

There were a few times when I felt completely helpless because I was overcome
with worry at what would happen. It was mentally and physically draining trying to
do everything and still wonder whether or not my wife would survive the disease
she was fighting. Thankfully, the temporary bouts of feeling overcome with worry
subsided and I continued to do what was necessary each day until we made it
through the entire ordeal.

Heather and I were shown so much love and care from people in our
community. Friends and family members united together to give us encouragement,
financial support and to support us in many other small ways. Each thing done for
us was a great help and I am unsure how we would have made it through Heather’s
treatment process without all of the incredible assistance we received from these
great people.

If I have any advice to give to someone who is a caregiver, I would say that it is
really important to be open to accepting help. It often takes many people coming
together to help someone pull through a disease. The support that was given to us
made a big difference in our lives, and we will always be grateful for it.

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No matter how big or small the help is that is being offered by someone, it is one
less thing to worry about. The less you have to worry about, the more you can
focus on caring for your loved one. Being a caregiver may be the toughest time you
face in life, especially when you worry about whether or not the person you love
will survive. But when you have other people to lean on during the time, it makes it
easier to get through every day. Remember that there is no room for stubborn pride
in a battle with cancer.

Today, Heather is free from cancer. It has been years since we received the news
of her mesothelioma diagnosis and our lives have returned to something resembling
normalcy. I went back to school to study Information Technology when Lily was two
years old. The time management skills and the stress management skills I learned
while being a caregiver to my wife worked to my benefit. I discovered I could do
more, and when I graduated, I was privileged to give the graduation speech for my
class.

If you had asked me back then where I would be five years later, I never would have
guessed at the surprising turns my life would take. I am grateful to all the people
who helped us, and I am grateful my wife is healthy and in remission. Now, we wish
to share our story of hope with others, in the hopes that it may inspire them in their
own battles today. Never give up hope, and never stop fighting for the ones you
love.

Eva’s Awareness Drill after her Cancer

(Here is a guest article from Eva Grayzel on her diagnosis of oral cancer and her awareness mission, Six Step Screening. This guest article is presented in view of April as the oral cancer awareness month.)

At age 33, in the midst of a successful career as an interactive performance artist and master storyteller, I received the terrifying diagnosis of late-stage oral cancer and given a 15% chance of survival.  A non-smoker, I had been bounced among dental professionals while the ulcer on my tongue grew more prominent and painful.  I endured a free flap reconstruction of my tongue, a modified radical neck dissection, and a maximum dose of radiation therapy. Through an extraordinarily successful treatment plan, I not only survived but also regained my ability to speak clearly. With a second chance at life, I couldn’t let the same thing happen to someone else.

A champion for early detection, I founded the Six-Step Screening™ oral cancer awareness campaign for dental professionals and the general public. My mission is to raise public awareness about the existence and early signs of oral cancer, and inspire oral health professionals to perform thorough oral cancer screenings regularly on every patient.  I created memorable and catchy titles for the Six-steps in a  thorough oral cancer screening.

The Six-Steps:

Tongue ‘n Gauze

Pull out the tongue with gauze, visually examine it for any swelling, ulceration or variation in size, color or texture.  Gently run your index finger along the lateral borders to feel for any hard tissue.

Lip & Cheek Roll

Roll the tissue of the buccal mucosa and lips between your fingers noting any firm or nodular areas.  Pull the upper and lower lips out completely, examining the labial mucosa and sulcus of the maxillary vestibule and frenum, and the mandibular vestibule.  Examine both sides of the buccal mucosa. Check for change in color and texture. Remember to move your mirror.

Double-Digit Probe

Visually examine the floor of the mouth and palpate it bimanually with a gloved finger beneath the tongue and another under the chin on the exterior skin.

Palate Tickle

Check the hard and soft palate visually and palpate with your finger.

Neck Caress

Roll tissue over the edge of the mandible.  Have your patient turn his head to the side and look down to make the Sternocleidomastoid muscle (SCM) stand out. Roll the soft tissue of the neck over the SCM.  Palpate the tissue around the Adams apple.

Tonsil Ahhhhhh

Take a good look at the tonsils and the back of the throat. Check for asymmetry, ulceration, or redness.  Examine the retromolar pads and all of the adjacent tissue.  Ask your patient if they have experienced any hoarseness, voice changes, or pain.

I also created a mnemonic called ‘Saving Lives with a SNAP.’  How can a dental professional possibly remember exactly what a lesion looked like two weeks prior?  Is it a little bigger, a litter redder? Snapping a photo is easy and a great record-keeper.  I wish my dentists and oral surgeons had taken photos of my lesion!  I remember what my ulcer looked like.  When I see photos in dental journals of classic oral squamous cell carcinomas…I see what I remember was on my tongue. When I speak, I always discuss the  importance of taking photos of suspicious lesions. It’s quick to take a photo, while being a helpful tool for recording and remembering a suspicious area. Along with taking a photo, the mnemonic for SNAP is a great way to remember four crucial items:

SNAP a photo! A picture is worth a thousand words in monitoring changes in your patient’s mouth.

S = Say, “I’m performing an oral cancer screening.” Educate all patients about dentistry’s deadliest disease.

N = Never say, “If it doesn’t improve, come back.” Schedule an appointment in two weeks to re-evaluate.

A = Always follow up. Benign lesions may evolve into malignancies. These patients should be followed.

P = Pathologist: The histologic interpretation of neoplasia demands the specialty expertise of an oral pathologist.

I share my personal story at dental meetings worldwide hoping it will inspire dental professionals to perform oral cancer screenings on all their patients, as well as demand them for themselves and for those they love. Together, we can save lives. It’s more than my mission to educate. It’s my tribute to all those that came before me and my obligation to those that will follow.

BAND IT! Campaign at ‘Dhol Baje’

by Kanika Sabhlok

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On 27th October, 2013, Manipal University hosted an event called “Dhol Baje” -a dandiya event to celebrate Navratri, in collaboration with the local Rotract Club. We got an opportunity to put up an informative booth at the event, where volunteers gave informative brochures to the public and explained to them about the causes and risks associated with oral cancer.

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This idea was successful since many students were reached out to and it was stressed upon how smoking can adversely affect their lives. Volunteers also raised money by banding people with a black ribbon, to encourage them to join this fight against oral cancer. Overall, it was a fun filled night with dancing, clicking of the dandiya sticks and of course, arms tied with black ribbons – showing their support to fight oral cancer.

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Tongue Tied: The story of Eva

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Eva Grayzel, a Stage IV oral cancer survivor and a performance artist recently released a video about her story and shared it with us. She has presented the course of therapy from the eyes of an oral cancer patient. It is a tender story, yet shows so much of strength shown by her and her family in fighting with oral cancer. She has survived cancer for more than a decade and has spread the word about it since then, creating general awareness and saving lives.

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“It all started with a little sore on the side of my tongue” Eva says and for the next two years the symptoms did not show the gravity of the condition and she couldn’t be rightly diagnosed. That’s how her story started and could have ended same time if she were timely diagnosed and treated for oral cancer. But it took a very long time and the condition worsened.

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Eva jumping for joy in Monument Valley Utah….another day of life to celebrate!

 

“ Crying made my symptoms unbearable. I learned faster to control the tears. I fought ugly thoughts with pretty ones. I replaced unhappy endings with happy ones. I dreamed about my future.”

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“Throughout my ordeal with oral cancer, I never lost my ability to make a choice. When we choose whatever our life challenges with strength, we turn adversity into opportunity, an opportunity to leave a legacy, a legacy of choosing courage. Choosing gratitude. Choosing moments to cherish.”

With such thoughts, Eva fought the malady of cancer and inspires others with her story.

Awareness Walk at NIT-K

by Sampada Deshpande

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Orientation of the volunteers

The Oral Cancer Awareness Drive NITK 2012 took place on the 20th of October as a result of the fruitful collaboration of our team in Manipal (led by Dr. Anirudha Agnihotry) and the Rotaract Chapter of NIT Surathkal. We communicated with Harold Benson, President of the Rotaract Chapter, NITK and planned the whole event of Awareness Walk 2012, an experience that will forever stay in our hearts.

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Volunteers with pamphlets

As part of this Drive, we went to different places around their beautiful 250 acre campus and distributed pamphlets pertaining information about Oral Cancer. We educated students, mess workers and pedestrians about the different facets to this disease and made it easier for them to understand the diagnosis and treatment procedures. The thirteen of us distributed nearly 700 pamphlets in the two hours that we spent there.

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Having a dialogue with people

My most memorable moment was when we came across a young man with an incessant pan chewing habit, who informed us about bleeding from his mouth while eating and brushing. He caught up to us after having read our pamphlet carefully and nervously asked if he had cancer. We informed him about the various causes for oral cancer and that bleeding might suggest it but does not confirm it and advised him to get a check-up at the nearest health facility as soon as possible. One of the volunteers relieved him greatly by telling him that a symptom of cancer if detected early, can almost always lead to an early diagnosis and an effective treatment. He thanked us for our help and assured us of making a visit to the doctor/dentist immediately. It was a good experience and I felt great by helping people.Image

The team

Oral Cancer Awareness Drive

WHAT IS IT?

It is an initiative of Oral Cancer Organization that comes under their objective of spreading social awareness about cancer through presentations, awareness drills, roadshows and camps.

The target is to make the general public aware of the characteristics of oral cancer and encourage them for regular screenings and to have a healthy life style that will keep them away from the risk of developing oral cancer.

HOW CAN YOU HELP?

We keep carrying out different events. You can be a part of them. Keep following us on Facebook and our blog. Suggest us any new ideas you have and we will help you execute them for the cause. It could range from Awareness Walks, Seminars, and any kind of Fund-Raisers, Educational Programs etc.

WHY IS THIS REQUIRED?

Because oral cancer usually becomes more evident in the advanced stages, when it becomes hard to control it. Moreover, if it is diagnosed early, it can be cured with better chances of patient survival and with less suffering after the treatment procedure.

CONTACT US!

awareness.oralcancer@gmail.com