The Realitiy of Treating Mouth Cancer

What I remember most about the first days after my diagnosis with squamous cell carcinoma of the floor of my mouth was the need for information.  I was researching on the internet, I called the local chapter of CANSA,  I was bent  over old encyclopedias trying to find out what a carcinoma looked like,  I spoke to my doctor and other so-called experts.   I also truly did not understand what the word cancer actually meant.   Or why certain tumours lead to one’s demise.

Most importantly, I wanted to know what my treatment options were and secondly, what my chances of survival were.  It was as if deep within myself, I understood that if I had knowledge, I would be in control of my destiny, rather than being caught up inside a runaway cancer train.

The radio oncology unit I had been referred to was very helpful in terms of explaining the process of radio therapy.  I was booked for forty two sessions at maximum grade.  At the time I had no idea what that meant – I had no context for understanding that maximum grade means that there are no second chances in the same area – it is maximum exposure to the rays that kill tumours and tissues.   I got some answers about what a carcinoma looked like and was informed that chemo was not ideal for my type of cancer, but nobody ever gave me a view or inkling of what my life was likely to be like of a couple of years down the line.  Which, with hindsight, I think might have changed some of my decisions.

My husband was as devastated as I was with the news.  We had recently lost a dear friend to cancer and we read each other’s minds – the fear of my going the same way was very real.   C is an engineer, so he started searching the internet to find out how the mechanics of radio therapy worked.  I went for a CT scan - and within days for a fitting of a mask that would hold my head in position during radio therapy treatments. Things were happening very fast, I did not feel as if I had sufficient time to think about what treatment was being arranged for me. 

I trusted my surgeon ad my radio oncologist because I knew no better.  When receiving devastating news such as  the big C, one reverts to a child-like state, and one needs to be told what t do next.  Go for a scan, see that doctor, get this approval from the medical insurance – and one puts one foot in front of the other, obeying silently.   My husband and I realized from the briefings that I was about to lose most of my saliva glands and that a permanent dry mouth or so-called Xerostoma was a real outcome after my course of radio therapy treatments.   My husband spoke to my radio oncologist to ask about shielding the saliva glands – she said she would do what was necessary to kill the cancer first and then worry about the rest.  I lost all but one of my saliva glands in the process.

Interesting thing about saliva glands is that some of them produce a liquid with a thicker, cohesive consistency and others produce a runny or watery consistency.  If you only have the runny consistency, you end up with a tendency to drool and it is difficult to control the flow of saliva.  But that I only found out much later.

It is also interesting to note that any teeth in the direct path of radiation (or even in the exit path)  will probably not survive – no matter how healthy they are at the outset or how well you care for them.   It is probably better to have teeth at risk removed before radio therapy, as removing them later, after radio therapy has compromised the blood supply in the area, tooth extraction can become very dangerous indeed.  In my case it lead eventually to losing part of my jaw bone – but again, this information took a few years to reach me.

One tends to focus on the area in the margins around the tumour – for good reason.  If the tumour isn’t killed, there would be very little else to worry about.  But care can be taken to shield bone from radio therapy, and neck muscles and soft tissue in nearby areas can be skirted.  In my case, much of the soft tissue became extremely rigid with scarring after radio therapy.  The Larynx and Hyoid bone became stone-like and now moves with extreme difficulty and great effort.  Long term, radio therapy damage to these organs can impact greatly on quality of life.  But again, we were not made aware of these facts at the time and I entered the curative radio beam with my vulnerable soft throat tissues exposed both to the proximity of the lethal tumour and the effects of the radio beam – not understanding that the radio beam was every bit the scalpel, and that the resulting soft tissue damage would be functionally no different to having tissue and muscle excised by scalpel.

If I had known some of these and other consequences, I might have opted not to continue, knowing full well what the alternative was – as my surgeon put is so eloquently – I “would eventually fall apart at the seams”.  But not knowing is not having options.  I think patients should know what the long terms effect of treatment are and that knowledge should be factored into their decision making process.

Radio therapy took place five days per week and lasted only a few minutes.  The treatments were not painful, the staff were sympathetic and I felt almost no change during the first two weeks.  I was banned from wearing makeup, using cleansers and moisturizers on my skin and from going in the sun.  I could only use aqueous cream.  The staff kept a keen eye on my skin and I was weighed every week.

Around the start of the third week, I noticed an unusual tenderness inside my mouth.  The mucosa were starting to dislike exposure to hot or spicy food.  I felt tired and wanted to rest after treatments.  I spent a lot of time in the garden, where I had a couple of bird restaurants, and tried not to think about the cancer.  During my few minutes under the beam I visualized the cancer being destroyed.  I had a very visual depiction of the destruction of my tumour:

I imagined a moonscape, complete with dark sky and monochrome flat and pockmarked landscape.  In a line, protecting the coast line against the invasion of a long gone sea,  I visualized a number of large concrete boulders, about 1.5 meters high and about three meters wide,  (South Africans know them by the name of “Dolosse”) lying prostrate on the ground.  These boulders have four protrusions that hold back the force of the sea.  I saw the boulders exploding one at a time as I heard the zoom of the laser beam rotating in it’s mechanical arm, travelling around my head and around my eyes, which were taped closed for the duration of the beam activity.  It was quite uncomfortable lying there, completely motionless, because I also had to bite on a tongue depressor to lift my tongue during the treatment.  Mind over matter and all that sort of thing, I focused on watching boulders explode, repeating in my mind “Kill the cancer, kill the cancer!”.   I think the shape of the boulders with their protrusions resembled my image of a tumour and it was easy to imagine a wind coming up after each explosion to blow away all the dust and remains of the boulder – or in my mind, the tumour.

As time wore on, ulcers developed in my mouth from the radio therapy.  The staff had warned me against these ulcers, but no words could have prepared me for what this meant in reality.  The ulcers were large – on my tongue and on the inside of my cheeks.  My dying saliva glands contracted painfully and most substances – sweet, salty, sour or otherwise, burned the inside of my mouth.  Water was ok providing it was neither cold nor hot.  Eating became almost impossible and I started losing weight quite rapidly.  Over the course of the treatment I lost close to fifteen kilograms, and I felt very weak.  I also suffered hot flushes from time to time as well as sudden chills.

In terms of treatment, I used a sticky version of oral cortisone cream for the ulcers, and the radio oncologist also prescribed me oral cortisone, antidepressants, oral morphine and steroids for appetite and energy.  The oral cream was more or less useless, as the burns were administered daily and the cream had little time to repair the damaged tissue over night.  I developed deep gouges at the corners of my mouth which left permanent scars.

Eating was becoming more of a challenge.  The radio-oncologist recommended a cocktail of two dissolved extra strength Disprin analgesics, two teaspoons full of Mucaine (a liquid anti-acid) and Dynexan (an oral local anesthetic or soothing cream) which I mixed up and swooshed around my mouth together with a sip or two of morphine before eating anything.  Meals were mostly soft or liquid, and I made sure I emptied my bladder before eating, as the moment food came into contact with the open sores in my mouth, the pain was so severe that my bladder spontaneously released itself.  I ate very little and spent most of the time resting.  As my saliva glands died off, I became intimately acquainted with dry mouth syndrome.  I used some commercial xerostoma sprays and also a mixture of medicinal glycerin and water to hydrate my parched mouth.  Not having much saliva did not help with the healing of the open sores.

A complication I found out about in a rather unpleasant way is that morphine causes severe constipation.  I had been taking increasing quantities of morphine to deal with the discomfort in my mouth and at the same time my colon more or less went to sleep.  From that point onwards, every dose of morphine was accompanied by a laxative.

I also drank a couple of whiskies diluted with water at night – mostly because of the numbing effect of the alcohol on my mucosa.  Sometimes I got tipsy:  not eating much, morphine and whiskey – an interesting combination.

My tongue also became more rigid as time passed by.  Towards the end of the treatment it felt as if I had lost some sensation in my tongue, and I was almost completely unable to move it.   Speech became very difficult, and my husband was the only one who could understand most of what I said.

My sense of taste had disappeared early on in the radio therapy process – even before the ulcers had started in my mouth.  Sweet tastes disappeared first, followed by salty tastes.  I realized that if I was to survive I had to eat – not by what I tasted but by what I smelled.  I took to drinking Chai tea with honey and milk, I had creamy milk shakes and tried to consume food with a pleasant smell.  It was very frustrating to eat and not taste the food, particularly when the food was also burning the living daylights out of your mouth.  One evening I melted a chocolate bar, added some cream, honey, sweetened condensed milk together with instant custard in a cup in the microwave – desperate for the taste of sweetness.  I think the smell of the chocolate and the honey might have done more than the taste of the concoction, and I abandoned it after the first spoon full as sweetness seemed to impact on my mucosa too much.

As a result of all the upset in my mouth, I had ended up with severe oral thrush and this made it very unwise for me to consume sweet things.  But somehow all this passed.  In a couple of months the treatment was over.

I was weak, emaciated and mostly not quite myself.  Somehow I had gotten it into my head that I was not a safe driver and I refused to drive myself anywhere, waiting for my husband to chauffeur me around.  Generally I was timid and felt vulnerable.  I preferred staying at home to going out.  Talking was still very difficult, so I avoided seeing friends.

I performed daily visualization exercises, imaging new skin covering the open sores in my mouth and particularly covering the raw corners of my mouth.  Gradually the sores started getting smaller.  I continued to lose weight up to about a month after the treatment had ended, when my weight flattened out and stabilized.  Daily life had more or less been reduced to getting through each day, one day at a time.  There were doctor’s visits, scans, blood tests, being weaned off certain medications, trying to get back to a few hours’ work per day.  I enjoyed spending time with my animals and the cats in particular seemed to sense that things were on the improve as more and more often, one of them would ask for attention – something they had refrained from doing in the previous months.

It was over.  This realization was a bit of an anticlimax.  I was so exhausted that I didn’t really care too much if we had beaten the cancer or not.  I wanted to rest, not think about cancer and do simple things.  I wasn’t able to concentrate much and I considered giving my husband power of attorney over my affairs as I felt that my decision-making was not good.  As if from a distance I saw that some friends attempted to drop in and be there for me, whilst some other friends and family found excuses why not to do so.  It didn’t really matter at the time because I was very inwardly and self-focused. 

I wrote out a new will, with a living will clause and discussed with my husband what should be done if I got sick again.  I was not willing to undergo this process again and I made my wishes clear to him.  I wrote up arrangements for a funeral and tried to make peace with people with whom I had in the past had disagreements or differences.  I wanted my side clear.  Whilst I did not actively believe I was going to die, I wanted not to be a burden to others if I became so ill that I could not make decisions any longer.  In my mind’s eye, I visualized myself doing fun things again, realizing some of my dreams, but I planned as if I was going to die.  The radio oncology centre I attended offered the services of a councilor and I met with her twice.  I was tearful during the meetings and realized that I was in fact in a process of mourning for the loss of my good health, for the loss of so much of my speech and eating function and for the loss of the things that could have been - had this tragedy not befallen me.

My surgeon, who was a devout Buddhist, had recommended that I take time to see the beauty in nature all around me and to allow this connection with nature to bring me peace.  I allowed my interest in photography to develop under his encouragement as I gradually recovered.  This period of my life was one during which I tied up loose ends in my personal affairs and relationships and where I spent time enjoying nature.  But mostly it was a solitary time, where our friends kept their distance and where my family, who could not cope with the complexities of the situation, simply pretended it was not happening.  On the day we travelled to the first radio therapy session, I played Vangelis’ Conquest of Paradise (Theme from “1492”) in the car.  I listened to the same music every day thereafter as we travelled to radiotherapy.  It made me feel victorious.  It gave me hope.

Shortly before I commenced with my treatment, I had turned to my husband and asked him if he thought I was going to survive this ordeal.  He looked at me intently, as if he was really considering the question in some detail and then he simply said: “yes, you will”.  And I think that was what I believed and what I believed became truth.  Somehow I thought that he had been to hell and back, and he had knowledge of what it takes to survive, so if he thought I was going to make it, I could trust his judgment and it would be so.  And so it was.

After my treatment ended I experienced a sense of new beginnings – slowly at first, but increasingly so.  I felt as if I was in a state of grace.  I truly am not a religious person, but I felt as if I was in a holy space.  I felt like I was communing with angels and powers unseen.  My intuitive abilities were heightened and I realized that I actually had an intense interest in other people – in humans.  I wanted to work with them, help them.  I wanted to help them survive difficult times.  It also seemed as if my wisdom was increasing - many people came to me for personal advice.  Without knowing it, I had become an advisor and confidant to people in my circle.

Most of my friends and blood relatives were conspicuous by their absence during this time but there was one exception, my friend AH.  He was not a very long standing friend, in fact, his wife and my husbands were friends, and we only met a few years previously, when AH and EV got married.  He had no kidneys after a military motor accident caused him severe and irreversible injury.  AH went for dialysis twice a week and he had become very knowledgeable about doctors, treatments and hospitals in the eighteen years since he lost his kidneys.  It was in fact his interest and attendance that caused me to bequeath him my kidneys should I die in the near future.  I also wanted to get strong and offer him at least one of my kidneys as soon as I was suitable donor material again.  AH encouraged me, always prompting me to question the doctors, to seek new perspectives and to look on the medical profession as the mere mortals they are, rather than some authority that needed to be believed without question.  AH passed away before I attained remission, but I learned from him that if you have had a similar experience, empathy is the easiest thing in the world, whereas if you have no similar experience, you can only run from what frightens you.

The people around me did not abandon me in my hour of need – instead I choose to believe that their own fears, the fact that I reminded them of their own mortality, caused them to head for the hills.  Once I understood this, I was able to have empathy for them, to forgive because they truly were ignorant as to the path I had travelled and I did not blame them for not understanding or for being scared.  AH also commented one day that my interaction with the birds in my garden had contributed to my recovery.  He may have been right, I certainly felt at times as if the birds were more than birds, as if they were special messengers, here to look after me.

Slowly life developed a new rhythm.  I went back to work full time, I had scans every three months and I believed that I had beaten the big C.  My boss, PdB, was supportive and tried to help make up the ground I had lost – although I think that after my cancer treatment, my interest in corporate warfare was never the same again.  I travelled less, did more work from home. 

It seemed as if a calm was settling in over my public life.  I had gained a little weight and looked rather good again.  With some research I had found out how to adjust my soft diet so that I could cope with eating on airplanes and at formal dinners without seeming to rude.  Eating in company was difficult because of the dry mouth causing difficulty with swallowing, and because I could not move the bolus of food from the front of my mouth to the back for swallowing without helping my tongue  a little – either with a fork, chop sticks or fingers – to move solid food to a swallowing position.  My speech recovered a little, but I found it extremely frustrating to speak because many people did not understand what I was saying.  Particularly in foreign languages, such as German, Dutch, Portuguese – where I was not a native speaker – people struggled to understand me.  I retreated socially, not going out much, preferring to gesture rather than speak at times and relying more and more on my close associates at work to do the presentations and to interact with clients.  I saw my career falling apart and I was not unhappy about it, although I knew this would mean financial difficulties in times ahead. 

I had overcome my silly notion not to drive and was once again mobile, although I felt that the movement of my neck was a little restricted.  Looking left and right at intersections required me to turn my body as the movement of my neck was not what it used to be before surgery and radiotherapy.  But I adjusted and settled in to trying to be an average worker instead of the star I had been.

Things at home were not very easy.  I became increasingly frustrated with not being understood when I spoke, sometimes having angry outbursts because others could not understand me.  My husband kept on asking me to repeat things and this I did, but not without getting impatient.  He in turn also became impatient and we had many arguments – frequently around the matter of communication.  C was still suffering some of the after - effects of the shooting.  He was distracted, often frustrated with himself, and various other problems manifested that made his life unpleasant.  I was tipped off by a friend that his behavior was reminiscent of someone suffering from frontal lobe syndrome.  When I looked it up, I felt that it fitted – many executive functions were not up to his normal standard and empathy and patience - which I had always known to be C’s strengths, were now seldom to be seen.  Our relationship was difficult, and although he tried very hard to support me, given all his personal challenges, I was not easy to live with either.

The truth is that between us we had so much baggage, so much frustration and we had each suffered such great loss, that we kept on lashing out to each other – in a futile attempt to release the pent up emotions, the unresolved issues and the on-going frustrations related to adjusting to a normal life after a life-changing event.  Life would never be like it was before again.  We had to redefine ‘normal’ and try to make peace with our new realities.

For anyone who finds themselves at the start of a journey fighting oral cancer, know that it can be done.  There is hope, there is a tomorrow.  But it is a tough journey,  it will take all you have and more.  It will take an excellent team of medical experts to support and guide you.  And you will have to fight harder than you have ever done in your life – not only your disease, but even the people who treat you.  You always have to stand up for yourself, ask  ”why this procedure”  and “how does it serve me – both now and later”.  What remains of the person and the body that you once were after the ordeal is incredibly valuable.  There is dignity and wisdom in the scars we live with,  there is knowledge to be gained for those who travel the road after us.  And there are new vistas to be discovered inside the Self.  You will discover that we virtually have no limits on the inside, that whatever is thrown at you, you will probably survive because that is how Evolution programmed us.  The instinct to survive is stronger than the desire to lie down and die.  Maybe it makes heroes of some of us, but I prefer to think it just makes human beings of us, doing what we were destined to do.

Over the next two and a half years my life continued and I gradually adjusted to eating and speaking within the confines of my new physical limitations.  Even dry mouth syndrome or xerostoma is something you can get used to.  If you make up your mind to make the best of what you have, life can be reasonably good.  I developed my writing, pursued photography and tried to travel as much as I could.   My husband accommodated my frustrations about speaking and not being understood, and I was slowly learning the lessons of patience and acceptance.

On the medical front, my dietician ST made sure I had energy shakes and supplements to make up for what nutrition a soft diet could not quite provide.  The dangers of sugars were brought home to me often with bouts of oral thrush.  I knew that sugars were bad from a tumour growth point of view, but sometimes, a sugary yogurt, instant custard or such like is all you can handle at a buffet made for people with normal swallowing ability. But you pay for those transgression – the Candida Gods are easily displeased when you indulge against their dictates.

During the first month of my radio therapy course I had stopped menstruating.  It seemed now as if this was a permanent situation.  I was saddened that I would now not know the joy of motherhood, but also understood that my body had taken a beating and that it was probably for the best.  I concentrated on getting stronger, regained fitness and tried to maintain the status quo as best I could.

Halfway through the first year after treatment, one of my radio-therapy–affected saliva gland openings in my left cheek started to misbehave without any apparent cause.  It felt as if it was permanently contracted, I had a minor infection in my cheek and a permanent level of discomfort developed in the inside of my left cheek.  Consulting with my surgeon dismissed my irrational fears that the cancer was back.  He thought the opening of the saliva duct was blocked and arranged for me to have an x-ray of the area.  I was a bit surprised that he ordered an x-ray, knowing full well that the duct was blocked, but he had a few grey hairs and explained that the cheapest and quickest way to open a blocked saliva duct was to get the radiologist to feed a thin needle up the duct for x-ray purposes, as this procedure would conveniently remove blockages.

The procedure represented varying levels of discomfort, but the radiologist was kind and patient.  At one stage he complained that the scar tissue in my cheek had made it almost impossible for him to thread the needle up the little saliva duct.  I asked him for a minute and again returned to my visualization.   I imagined my cheek being made out of soft pink marsh mallow and I told him to try again.  He was amazed at the ease with which he was able to thread the needle up the duct.  I realized what incredible power I had in my mind – I could relax a piece of scarred soft tissue to such an extend that another person noticed the relaxation and commented about it!  It was a valuable lesson for future procedures and I still practice visualization whenever medical personnel have to do difficult things to help treat me.

My surgeon had been right.  The blockage was cleared, the discomfort disappeared and life continued as before.

From then on, my life was an on-going process of adjustment to my reducing levels of function, punctuated by events which triggered a fear of the return of cancer.  Work and social life was steady, but I continued to withdraw as my difficulties in speaking and eating caused me great social embarrassment and frustration.  Friends around the dinner table pretended that nothing was amiss, but I occasionally caught a look of pity as they saw me struggle to swallow.  They were too polite to ask me to repeat myself and gradually they stopped listening to me.  I saw their vacant stares as I related experiences or told stories and I shrunk back into the shadows without anyone noticing that I had stopped talking.  They had stopped listening long ago.

In the second year after my treatment, I started having difficulties with two teeth on the right side of my mouth, close the radiation exit point.  The teeth were fine, but loss of blood supply post radiation caused the gums to retract, exposing parts of the tooth that should be covered.  I had frequent infections and spent a lot of time taking oral antibiotics.  My dental regime was admirable: I brushed after every meal with a state of the art sonic electric toothbrush.  I flossed at the same time.  I used a fluoride mouth was which I also carried in my bag.  The Xerostoma spray was applied through-out the day to keep my teeth from becoming too dry and I was provided with fluoride trays for treating my teeth with fluoride every day for a minute or two.  The oral hygienist saw me every six weeks and she cleaned the areas I could not reach – which was difficult for her as my tongue was rigid with scar tissue and I could not open my mouth very wide.

My prosthedontist recommended that the two teeth be extracted because the chronic infection in the surrounding gums was difficult to manage.  He researched viable options to extract teeth post-radio therapy and recommended a course of hyperbaric treatments – twenty two in total – before the extraction.

The hyperbaric treatments were not painful or bad, but I disliked being cooped up on a glass tank for an hour and a half every week day without being able to do anything but lie and watch television.  The hyperbaric centre that treated me did not allow reading or anything that could cause a spark in the pure oxygen environment, which meant that you had to watch one television channel with the volume piped in through speakers in the tubular tank.

Essentially the Hyperbaric Oxygen  treatment or HBO for short involved being placed in a tank where you can breathe pure oxygen for extended periods of time at an atmospheric pressure of about one atmosphere – the equivalent of being submerged under water up to about five to ten meters below the surface.  Research had shown that under these conditions, injuries heal rapidly and that as preparation for tooth extraction in situations like mine, good results had been experienced.

I hated the time inside the tank, and again relied on visualization techniques to get me through the worst of it.  Being a little claustrophobic caused me to want to maintain visual contact with human beings all the time I was in the tank, but the technicians could not handhold me to the extent I would have like them to, and I had to submerge myself in a state of semi-consciousness to while the hours away.  I went to a happy place, counted my blessings, re-arranged the furniture in my house, wrote short stories in my head – and generally just allowed myself to be consumed by my own thoughts and ruminations.

At the end of the treatment course, I had two teeth extracted.  The prosthedontist, AS, implanted artificial bone in the cavity left by the extractions and he sewed a thin membrane over the opening.  It took more than eight months for the cavity to close, but all healed up well enough.  During those eight months I had to see the prosthedontist on a weekly basis to check on the progress of the opening closure and he had to clean it and attend to the operation site with great care.  X-rays were taken about every two months and the progress was measured and logged.

I hoped for dental implants once the site was given a clean bill of health, as the gap left by the missing teeth exacerbated my speech difficulties my allowing my “s” sounds to leak – making me sound like I was slurring my words.  With only one tooth remaining on my lower jaw on the right, I was also forced to chew on the left side of my mouth and the consequent atrophy of certain muscles caused my jaw to deviate to the right even more.  After the original neck dissection, I did notice deviation of my mandible to the left, but it did not really impact function, although my appearance had been impacted.  At this time though, I had to undergo another adjustment and acquire a new set of behaviors for chewing on the one side of my mouth.  This was difficult and I was back on a liquid diet for most of the time during which the operation site as healing.

It was towards the latter half of these eight months that I noticed tenderness in my neck, on the left side below my ear.  I initially attributed it to the dental work, and massaged the tight muscles for relief.  I imagined that the massage gave me some relief and I dismissed any further concerns about the matter.  But it persisted, pain increased and towards the end of the year I noticed a distinct bump under the skin.  Massage changed the shape of the bump, but it did not go away.

I returned to my ENT surgeon and he ordered a needle biopsy of the lump.  Considering the impressive number of invasive procedures I had experienced up to that point, one more biopsy did not seem significant.  It was however, the single most painful procedure I have undergone in a wakeful state.  The laboratory technician was not empathetic and repeatedly ordered me to sit still while she pushed a needle into the lump under my ear time and again, searching for enough sample material to suck up in the syringe.  I felt the tears streaming down my face and I bit my lip, but I was sobbing with pain.  It lasted for about five minutes and then it was over.  It had been one of the worst few minutes of my life and the woman walked away angrily, muttering that I didn’t know how difficult it was to take a tissue sample with a squirming patient in the chair.  Here is a BIG tip, to anyone ever having to undergo a needle biopsy:  refuse to have it without sedation.  And make sure you get a nice person to work on you, not some angry she-dog who has a grudge against the patients she has to needle.

The biopsy was a negative experience, and what it revealed was even more negative: the cancer was back! 

In my next post I will tell you what happened next.