Beyond statistics: the hidden face of smoking-related cancer

This story should be required reading for anyone who works for a tobacco company or denies that tobacco causes horrific suffering. The editorial team at Tobacco Control thanks Karen for her bravery and honesty in sharing her very personal story.

Beyond statistics: the hidden face of smoking-related cancer

By Simon Chapman, University of Sydney

The Russian dictator Joseph Stalin infamously said that a single death is a tragedy, a million deaths a statistic. And in tobacco control, there are statistics to die for. Tobacco caused about 100 million deaths last century. But a projected one billion people will die from tobacco-caused disease this century if present trends continue.

The average smoker takes 12.7 puffs per cigarette. A person who starts smoking at age 15, and smokes 20 cigarettes a day for 40 years, will baste the delicate pink linings of their mouth, throat and lungs with a cocktail of 69 carcinogens 3,710,940 times by the time they reach just 55.

Half of long-term smokers die early from a tobacco caused disease, taking an average of ten years off the normal life expectancy. A cigarette takes about six minutes to smoke. So for every cigarette that a person like former Beatle George Harrison – who died from lung cancer at 58 – smoked, they lost more than five times the time it took to smoke them, off the end of their life.

On and on it goes, but statistics on tobacco deaths have become banal for many. People rationalise that life’s a jungle of risks, that feeling fine or seeing longevity in a smoking relative means that they are bullet-proof, and cling to self-exempting beliefs like air pollution causes most lung cancer or that putting on some weight if they quit is more dangerous than smoking.

What is so often missing from these reflections about smoking is any real appreciation of the suffering and greatly diminished quality of life or the years that people can spend living with smoking caused disease.

On many occasions across my career I’ve received unsolicited letters, calls and email from people living with tobacco caused disease. Two in particular stand out.

An articulate 52 year old woman called me a few years ago. Give the “smoking kills” line a rest, she urged:

I’ve smoked for thirty years. I have emphysema. I am virtually housebound. I get exhausted walking more than a few metres. I have urinary incontinence, and because I can’t move quickly to the toilet, I wet myself and smell.

I can’t bear the embarrassment, so I stay isolated at home. Smoking has ruined my life. You should start telling people about the living hell smoking causes while you’re still alive, not just that it kills you.

Then last week, amid publicity on the 50th anniversary of the first historic United States Surgeon General’s report on smoking, an amazingly brave woman, Karen Daniels, wrote to me. Her words moved me to tears and with her permission, you can read them below.

Smoking tobacco causes around 70% of oral and pharyngeal cancers in men, and around 55% in women. In Australia in 2009, 3031 Australian were diagnosed with various head and neck cancers, and in 2010, 1,045 died.

Karen’s story

Karen Daniels: amazingly brave.

This cancer is brutal! Treatments are cruel! Daily for six to eight weeks during radiotherapy treatments our head and face is covered with a tight mask and bolted to a slab while radiotherapy is blasted at our mouth teeth jaw face and neck. Damage during and after this treatment is horrendous. Many of us will never speak clearly, swallow or function normally again.

Patients endure tracheotomies inserted in their wind pipe because we cannot breath naturally through our mouth and nose due to swelling and other side effects.

Many people are left with PEG feeding tubes shoved in their stomach for the rest of their lives because they will never swallow normal food via their mouth again. I had a PEG tube for three and a half years. A tube hanging from our stomach is sickening and depressing. Think about never eating another meal or swallowing again! You can’t imagine the never ending physical and emotional hell this particular disease causes.

I was diagnosed in 2007 at 46 years of age. Yes, I smoked for several years. I have endured 12 surgeries since 2007 trying to improve my quality of life.

Almost all my entire tongue, lower jaw, gums and beautiful teeth have been removed and reconstructed because of treatments to remove cancer. Bone was taken from my hip to reconstruct my jaw. Normal function is gone… Permanently. My perfect face is now disfigured.

I have not sat down to a normal meal with friends or family in almost seven years. Those pleasures of socialising, eating at restaurants and dinner parties that everyone regularly attends are history for us. I struggle to control saliva because of oral cavity nerve damage and facial trauma. Sometimes I dribble when I try to speak. I will never kiss again.

My life has been destroyed by this cancer, as has many other wonderful people around Australia. We lose our careers. Relationships fall apart.

We can’t make appointments over the telephone or ask for something over a counter. No one can understand us! We write down questions during appointments because we can’t speak and Doctors don’t understand what we’re saying. That doesn’t work! This is frustrating, humiliating and extremely upsetting.

The aftermath from this disease is debilitating and permanent. Dental issues are painful and relentless, yet the previous Federal Government abolished the Enhanced Care Dental Scheme. This is shameful!

We can’t just pick-up from where we left off. We can’t “do coffee” with friends and chat about our issues like most other cancer patients because we can’t speak or drink as normal. We can’t cover our mouth with a piece of clothing and get on with it. Our face is our identity!

Many smokers say things like “oh well, I’m going to die anyway” or “I could get hit by a bus tomorrow”. Well, from my experience I can honestly say dying immediately would be much easier than the long slow suffering this disease puts patients through. In 2007 while in hospital I had a cardiac arrest because the tracheotomy blocked. Once resuscitated, little did I know I had years and years of pain, ongoing treatments and loss of normal function ahead of me! It’s devastating!

My lower face and mouth has been cut and shut many times. My neck/throat has been dissected twice ear to ear. It’s been a long difficult road! I’ve undergone six surgeries in the past three years trying to improve mouth function and facial appearance. More than likely there’s a few more down the track. I have a wonderful plastic surgeon who genuinely cares!

Karen’s hopes are for more resources to be given to care and support for people like herself. I hope her story stimulates far greater attention to some of the cancers like hers that do not enjoy the publicity of some of the higher profile cancers.

But with so much potential for head and neck cancers to be prevented, I hope too that her unforgettable words will be passed along to anyone still smoking.

Simon Chapman does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.

The Conversation

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