Post Radiation Complications: A roller-coaster ride for the rest of your life

I am obliged not to leave you with an unplanned cliff hanger. And even though I am far behind with my studies, I thought that it might be good to take a quick break and share the good news with you: I have dodged another bullet from the big C!

The CT scan revealed cystitis, not a sick parotid gland, but because of the poor blood circulation in the previously radiated area, the entire cheek is compromised. It is highly susceptible to staph and strep and any other organisms. My cheek is not inflamed, my white blood count was 6.2 - but the cells are sick because there was some sort of bug that got in via the compromised mucosa (thanks to the lasting effects of radio therapy!) and this area is not healing as it should because there is inadequate blood supply,  there is insufficient lymph drainage and  the tissue has been compromised and is not functioning normally. The jaw bone is in the same boat – but now I am running ahead of myself.  I will tell you more about what happens to radiated mandibles when I finally get to catching up.

So to the lesson:  post radiation survival is a day by day roller coaster ride until the day you die. Once you are clear of cancer, that is when the real journey of survival starts, and I think it is sometimes more unpleasant than dealing with cancer itself. Probably because it will never end, will never be over, like the cancer can be over.  The risk of cancer reduces in line with one’s time into remission, but the probability of post-radiation complications increases over time, with normal age-related declines compounding the impact on compromised organs and tissue. There are also psychological declines.  Realistic expectations have to be set and managed that complications will occur: often, and with very unpleasant symptoms.  Teeth may give trouble, fall out, jaw bones may disintegrate, tissue may stagnate and die, new cavities may form where compromised bone and tissue die off - and all of this is very likely. Even if you take extremely good care of yourself, bad things will probably happen because an aspect of the body has been weakened. You are vulnerable and cannot expect to live an uncomplicated and healthy life like you did before radiation therapy.  This is tough to hear, even more tough to experience and very difficult to be positive about. Having said that, the altenative, to give up to pessimism - is simply not a viable option. 
I once heard someone say that cancer doesn’t kill you, it just wears you down and then one day, you are too tired to carry on and you just let go. Well I don’t agree with that, because cancer is an enemy that I managed to visualize and actively fight.  But post cancer survival after radio therapy is another kettle of fish entirely, and I can see now that I have a lot of mental adjustment to work through if I want to live a happy and functional life.

At a practical level, the primary implication is never to be without a ten day course of broad spectrum oral antibiotics in your medicine cupboard, and if you can persuade your GP, access to daily IV antibiotics during a crisis – because IV works better for areas where blood circulation is compromised.  If the cystitis is oral and severe,  you can dissolve a capsule of doxycycline in a tablespoon of warm water, swoosh it around in your mouth and then swallow it after a minute or so. It does make yur teeth look ghastly though!  And take plenty of probiotics.  Double up on what you should take and then throw in a few extra for good measure.  Eat yogurt, lay off the booze, smoked and processed food and avoid all sugars like the plague. Chew or suck xilotol if you can.  And top it up with Niastatin drops orally every couple of hours. Maybe throw in a bit of B vitamins to help you cope and check that your iron levels are good. I don’t know how men cope with candida, or even if it affects their bits like it does for women.  What I do know is that vaginal thrush from antibiotics can keep you squirming around with itching, burning and scratching,  embarrass you and make you more irritable than a year’s worth of PMS in a day.  Do whatever it takes to avoid it, as this level of irritation when your emotional resources are taxed is a complication you really can do without. Take some supplements to restore your cellular health - and sleep as much as you can.

You know that I am not a medical doctor, right?  So you must not do anything I say before checking with your doctor. But sometimes, it is good to give them a suggestion of what helped someone else.

As to the symptoms, I am now on day 21 since it all started. The pain has receded a bit – I have cut back my pain meds to night time for sleep only. The edema is slowly subsiding, but stil tender and uncomfortable to eat with. My oncologist thinks that we might be looking at another ten days before real progress becomes visible. Can't wait to open my mouth again by more than the width of one finger!

Even if it is tough, I have much to live for, I am blessed every day with wonderful experiences, opportunities, displays of kindness and access to help.  Given that things are what they are, I am in an extremely good place. I am one of the lucky ones.

Must get back to my books and study. I will catch up with you again after my exams.   

If you have lived through something similar and have advice to share, don’t be a stranger :)

I hate blogs that start up all enthusiastic and then peter out and fade after a while. And I vowed mine would not be like that.  My intention was to publish a dozen or so blogs to bring you up to speed with the present time of my recovery and how I got here.  But I discovered it was hard work to revisit the past, painful to relive those experiences and difficult to find the discipline to return and document it all. Harder work than I had imagined.  And emotionally draining. Sometimes one overestimates one's own abilities. No, the clever people say we always do that. There, my bad! I am human, and like the rest of the world I overestimated my cleverness and my abilities. But this is my journey - warts and all - and you have chosen to travel part of it with me and to be part of these discoveries of mine.  It seems like now we have started on a new chapter before the previous ones have been completed. I'll have to catch up later.  While I was still reviewing the history, a new headline is about to break. Have no idea where we are going, but come along for the ride!

What you don't know is that this year I went back to universtity to study - postgrad psychology. I need a new career because with all the speech problems after tongue surgery, what I was good at - speaking well - is no longer available to me.  So off to university I went and as a mature student I have found it very hard work to keep up with 22 year olds.  But I have loved every minute so far, and I enjoy learning about things that interest me. I love gerontology and personality psychology and even research. I hope I make it through the mid year exams so I can carry on with the next semester and graduate - although this is looking a bit optimistic right now.

Why the gloom and doom?  Well, I have what I think is a tumour or lesion or something in my left cheek. It came up almost overnight about ten days ago, manifesting as a bit of tenderness and swelling on the left hand side of my jaw.  Probably parotid gland gone rogue. Maybe a tumour, maybe something else.  It is swollen, it hurts like hell and almost two weeks of antibiotics have not made it go away. I spend my days vomiting from the cocktail of antibiotics and pain killers.  And sleeping - the painkillers work really well when you sleep. It interferes with my studies and it makes me very unpleasant to be near. I do a perfect bear with a sore head impersonation. I am taking Tramal for pain, Zofran for vomiting and several grams of Flagel and Augmentin orally, plus a bit of an IV booster. It has stopped whatever it is from getting bigger. But so far no reduction in size.

Had a CT scan yesterday, will see the oncologist on Monday to hear what the scan revealed. My favourite doctor is away on holiday is Spain. Bummer.  He at least knows to hold my hand while giving me bad news or painful procedures. But he will be back at the end of the week. Then I will ask him to make all this go away. Or at least to help me make sense of what is happening.

I have persuaded my GP to give me all the meds I need in the interim - without her having to make a diagnosis.  She is a lovely Greek woman - AC.  I love the way she swears.  Yesterday she told me:"I have given you enough f...ing antibiotics to floor a f...ing rhino and it still hasn't helped. I am tired of standing in for your bloody ENT specialist, this is a f...ing disaster. Go get some f...ing professional help!"  Then she gave me a hug and a script for more opiods. 

You kind of know after a while what the options are.  You can't really have surgery because of previous radio therapy which messed up the blood supply and which will cause trouble with wound healing.  You can't really have radiation again because the area has been maximally radiated previously and any more radiotherapy would only result in necrosis. Of couse these options remain as a very last resort, just before accepting death - but in the mean while, you go conservative with chemicals. Bit in a big way. High dosages, broad spectrum. And you hope for the best.  And if you take enough pain meds you can imagine all sorts of religious experiences and archetypal revelations.

And try to carry on with life. Study for the exams, trying not to fall asleep on every page.  And tell yourself that you are so close to realising your dream that this is just a small hickup and that the brass ring is in reach.

I think it will be ok.  I will let you know when I know more.  Mean while, wish me well.  I have been clear after my last radiation therapy 66 months ago.  I want to believe this is just a little blockage of my  parotid gland, and that the antibiotics will clear it up.

Somebody said the it will be as we say it is. I will be fine.

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.

Rating my pre-cancer treatment

I have always wondered if it would have been possible to arrest the progression of my disease while I was still in the pre-cancerous phase.  Not being medically trained makes it impossible for me to offer a clinical opinion on the matter.  But since it has been quite a few years that I have been on this journey, I have picked up anecdotal and other information along the way.  I will try to reflect some of this information below - presented as a score card.  It is not intended to criticise those who guided me but rather to document the insights gained, to present a view of how it could have been done better, cheaper, with less lasting damage, etcetera.  My hope is that is will have value for you.

Score Card for treating me pre-oral cancer.  (Five equals Excellent, one equals Poor).

A.  Surgical Intervention: = 1

The first item to rate is the number of lesion excisions or surgical interventions.  I had five excisions over a period of two years before I was diagnosed with cancer.  One of these was a complete dissection of my tongue from the tip to the root in order to remove the biggest of many cysts all over my tongue.  This partial glosectomy for a number of pre-cancerous cysts of my tongue and floor of mouth had no real or imagined potential to reach all the dozens of distributed small cysts.  I can’t help wondering if surgeons who perform glossectomies will not one day be remembered with the same horror that we nowadays feel when thinking of surgeons who performed early frontal lobotomies in the previous century. The sad legacy of this operation is loss of function - swallowing and speech is never the same again.

The result of this procedure was that my tongue ‘shrunk’ - due to scarring and muscle atrophy.  It became so short that I cannot lick my lips any longer.  From a speech perspective, all sounds and words that need the tongue to work with the front teeth are compromised by such surgery.  It makes it difficult to swallow without choking.

I later also had an invasive biopsy of the root of the tongue – coming in from the tongue surface and extracting a tissue sample near the root – about the size of my big toe nail.  There was no benefit in this type of deep biopsy as the muscle was compromised, scar tissue formed and my swallowing was never the same again after that.  The pathology analysis was not different to the surface biopsies, but the price paid in terms of lost function was very dear.

We consulted with a range of other professionals after becaming concerned that my initial surgeon, GF, was a little too eager to slice away at my tongue.  One of those experts was a member of a preventative tumour practice.  They wanted to treat the lesions and ulcers on my tongue with bleomicin therapy (tumour antibiotics) to contain spread into the soft tissue.  Their prediction was that I had about six months left to live unless I followed their recommended treatment.  Needless to say their fees were steep.  I can only thank my lucky stars that I ran from that practice in a hurry.  

I met up with an interesting plastic surgeon, KB, who offered to be my case manager – for a significant fee.  He was of the opinion that his type of speciality positioned him very well to co-ordinate other medical experts, although he would not personally treat me.  He did a fairly invasive biopsy of the floor of my mouth – after which I headed for the hills.  His fees for the biopsy exceeded the total of the two previous excisions and I realised that greed is as much part of the helping professions as in other walks of life.

The operations and invasive biopsies did not solve the problem, I would rate this criterion a one.

B.  Surgeons Operating Solo: =1

Apart from the fact that I was initially treated by young surgeon, who was a brilliant technically, but who maybe could have done with a few grey hairs to better determine when not to cut, I think the problem was that in South Africa at the time, cancer was treated by one or, in exceptional situations,  two individuals collaborating on a case.  Most often the surgeon and the pathologist were the only people who diagnosed and recommended treatment.  It is my conviction that I would have been better served by being referred first to a physician, someone who was willing to investigate the cause of the problem, rather than immediately resorting to surgery – purely because that is what the person knows best.  My view in retrospect is that an experienced team of medical staff should have been assembled to treat me and that decisions should have been made after deliberation and by consensus of the team.  I have thought about this matter long and think there is room for a personal case manager in cases like these.

This specialist case manager should assemble the team and ensure that they work together and to treat the patient holistically and humanely.  There needs to be oncologists, surgeons, pathologists, specialist physicians, physiotherapists, dieticians, psychologists, nuclear medicine specialists, speech therapists, dentists or peridontists, dental technicians, and specialists representing other necessary disciplines, all involved in the treating the patient.   Perhaps the natural conflict generated by many different points of view in such a multi-dissiplanary team is what promotes fresh perspectives, innovative solutions to traditional problems and better odds.   It is important that the team members not merely agree a treatment option, but that it is debated, critically evaluated and found to be the best option given all possible considerations.   

In addition, there is room for the allied medical workers and spiritual carers, such a acupuncturists, Reiki practitioners, the clergy, healers, other religious or traditional healers, homeopaths and so on.  These people can all play a vital role in helping the patient find their way through a very confusing and a very dark time in their lives.  They help the patient by promoting optimism,  well-being, giving them a sense of acceptance, belonging and a purpose for carrying on. 

Medical experts are just people, some of them compassionate and caring, others with rather large egos.  When working in a team, there is a possibility of experience tempering rash decisions, non – evasive therapy being given equal credibility with invasive action, patient expectations being managed effectively and preparatory work being done in case of the need for later cancer treatments and surgery.  One example is for teeth to be extracted before they can make trouble post radio-therapy.  And for the fitting of comfortable prosthetics, dental implants or dentures before cancer treatment commences.  In my case, particularly my first surgeon worked alone, did what he thought was necessary and often left me very confused about his treatment plan.  All right, I know that I am being a little generous by implying that he had a plan - but it is a fair assumption under the circumstances.  It would have been great if he had shared that plan with me.  I score this a one for consultation, teamwork and overall holistic approach.

As for the proposed case manager, I think a survivor of a similar cancer may be a very good candidate to lead or advise a patient support team.  Personal experience helps to manage expectations and it is motivational for the patient to have a case manager or coach assigned who has personally travelled a similar journey of their own.  It is important that the person who manages the case must fill the role of a leadership.  Experience is more important I think than medical qualifications in the role of a coordinator.  In my experience, the GP, who in South Africa is nowadays earmarked to fill the role of case manager in complex cases, is a big ask.  GPs are nice people, but unless they have had an encounter of the personal kind with the big C, they are as informed as anybody else.  I am advocating specialised cancer leadership rather than generalist leadership – and whilst a GP can be a specialised leader, this is unlikely while they are running a full time and general practice.

C.  Patient & Family Education: = 1

An area that was largely overlooked in my case, was patient education.  Certain lifestyle changes might have been enough to halt the progression of the disease.  I knew that smoking was not a good idea, but I got no real assistance in kicking the habit – no counselling or advice on how to do this.  The result was that it took me a rather long time to actually wean myself off my ‘social smoking’ behaviour and the occasional cigar.  Ditto about the dangers of alcohol.  In fact, one of my doctors encouraged a drink of alcohol at night.  Which in principle is Ok for healthy folks, but desperate people easily grab at crutches to cope emotionally if there are no counsellors or therapists intervening.  The link between alcohol consumption and oral cancers was never pointed out to us and I can recall how accessible a painkiller alcohol became when around the dinner table the pain got bad. 

Family members have the best intentions but unless they too have been educated,  sometimes all they end up doing is making matters worse.  I remember a relative asking me why I did not quit smoking when I had a problem with my tongue and I just looked at her.  She lacked insight and more importantly, empathy.  For me, excessive stress, knowing every day that these changes in cell structure might turn into cancer any moment, lead to the use of various coping mechanisms:  Rationalisation: “only one cigarette after dinner can’t be bad”.  Denial: “Of course I can have another drink – the doctor said I could have one, so it can’t be bad for me”.  Bargaining:  “I’ll get more sleep if I finish this or that task at work.  But only if I finish it.”  “I’ll eat later, when the pain isn’t so bad”.  These lifestyle issues were overlooked and under-explained in my case.  Sure, they were mentioned.  But they were not managed.  I was a patient, mostly under the influence of opiates and sometimes combined with alcohol.  My judgement was poor to say the least.  I needed leadership.  I needed my husband and loved ones informed about how to help me.  Patients are ignorant and need detailed explanations and instructions to get them through the tough times.  And they need someone to talk to who understands what they are going through and who has experience and advice to share.

At the time, we were given no plan or clear idea how we could possibly arrest the progression of the disease.  Nobody told me what to expect or how I could influence the outcome.  Neither were we prepared for the possibility of a positive diagnosis of cancer.  In reflecting back on that period of my life, I mostly remember being in limbo – not knowing which direction fate would take me.

It might have been an excellent time to catch up on cancer research.  The Internet was starting to offer published research and there were plenty journals and medical reports available providing good insights.  Although these materials would not normally find their way into the average home, with a little encouragement and leadership from a medical support team we might have grasped the significance of the early studies on the effects of lifestyle, how to best take care of oneself, the impact of sugars, weight management, alternate medicines.  We were not adequately informed about the role of anti-oxidants, vitamins and a diet to support my healing.  I mostly survived on sweet diet shakes because they were easy to swallow– and my weight ballooned.  Doctors mentioned in passing that I had to watch my diet and keep it soft.  They said I must keep up my strength – that it was more important than worrying about weight gain.  Bottom line is that these words were placeholder words -  used by someone who knows what they mean in great detail but who either do not have the time or the interest to explain it to someone else.  This is another reason why a case manager should be involved – to inform and educate the patient and their support structures.

D.  Physiotherapy = 1

In the period following the various excisions of lesions on my tongue, scar tissue formed in my tongue and on the floor of my mouth.  I discovered much later that massaging the scar tissue could have softened it, preserved muscular function and improved blood supply to the area.  This applies to most types of surgery – but very specifically to oral surgery.

I score this matter a one.  My medical support team either did not know of, or discounted the role of physiotherapy in managing and stretching scar tissue after surgery and I have suffered unnecessary loss of function and permanent discomfort as a result of not having had this therapy at a time when it could have made a significant difference.

Today I have physiotherapy once a week to manipulate the soft tissue and underlying musculature and it brings great relief in terms of headaches, unclenching my jaw and  permitting me to open my mouth sufficiently to feed myself healthy food.  I consider physiotherapy critical to my quality of life and still am amazed that none of my medical experts ensured that I got this life-enhancing therapy in the early days, when it could have made a far bigger long term difference.

E.  Psychological Counselling = 1

In the pre-cancerous stage, I could have done with gaining some control over my life.  It would have made me feel better, less of a victim.  Planning the future, putting together a therapeutic schedule, arranging a list of experts to consult with – all these activities give one a sense of being in control.  Yes, the big C is staring you in the face, but you still have a few aces up your sleeve.  The game is not over; you still have a fighting chance.  Counselling also prepares one to cope with bad news – should it arrive.  And most of all, it prevents you from fearing that all the worst cancer stories are going to happen to you.  When you think you are in control – even if it is just control of your appointment schedule, you feel empowered, it is an environment in which hope can readily survive.

Pain management though hypnosis, visualisation scripts, breathing exercises and relaxation can sometimes be as effective and even more immediate in bringing relief than certain drugs.

Simply learning typical resilience skills can be beneficial, reducing the amount of stress which may contribute to the change in cellular structures and helping to keep relationships around the house at a sane and supportive level.

I was prescribed anti-depressants by my GP when I tearfully turned up at her rooms one day because I had had an emotional melt-down the day before and could not stop crying.  Perhaps this was an opportunity missed to refer me to a counsellor to help me find the right type of chemical support for my type of depression, coupled with supportive talk therapy.

During the pre-cancerous stage I did not have access to a counsellor and therefore score the criterion a one.  It seems so child-like in retrospect, but I only did what the doctors told me to do.  If they said I must go for surgery, I went.  If they said I must have a biopsy, I had one.  I did not use any over the counter medicines and took only the drugs that had been prescribed to me.  Some of this was because I feared that doing anything other than what the doctor told me to could make matters worse – something which most of my medical experts went to great lengths to emphasize.  But also because I was numbed – shocked, incapacitated by having my life turned inside out and having no certainly.  In that near infantile state, the wise counsel of an experienced cancer psychologist could have returned me to my former self:  a strong, intelligent and assertive person who asks questions, argues using logic and demands guarantees and proof before handing over responsibility for their body to others.  And that is really what every pre-cancerous patent should be like – totally in charge of their own body and life, a force to be reckoned who earns the respect and admiration of medical staff and who scares off thoughts of cancer.

F.  Speech Therapy = 2

Whenever surgery impacts speech, the patient needs a speech expert to help them recover what it possibleof their speech.  I can say this unequivocally today, having spoken to many oral cancer survivors.  For most of us, when we lose or have function loss in respect of our primary means of communication, the impact is not simply limited to difficulty in speaking and being understood.  It can easily lead to social isolation, withdrawal, depression, and if left for too long, worse permanent damage than what was absolutely necessary.  In this regard my surgeon did not think that I needed help, even when I asked him about it.  He felt that eating and talking would be adequate exercise to mobilize my tongue. 

Given this advice, I coped with speech and eating as best I could during the time that I had a series of operations and was left with declining function and increasing scar tissue over a period of two years.  I coped so well that I taught myself to speak in a manner to compensate for the sounds I could not manage, and I leant to speak incorrectly.  My diction, which was previously fairly good, became haphazard.  As I grew fatigued through the day, I made less and less effort to correctly articulate and eventually fell into lazy pronunciation all the time.  My family and friends tried to follow me, but no expert feedback or advice was available to guide me along the best way to make the most of what remaining function I had for speech.  We all know how difficult it is to unlearn habits.  When I eventually met up with a speech therapist many years later, I had great difficulty improving my speech, and I had missed a window to gradually adjust my speech in tandem with my changing oral pathology.  I think a few well-placed words of feedback could have made a significant difference in terms of learning to make sounds in a different way when the normal way of sounding became impossible.  In the absence of such guidance, I score this criterion a two, as I had taught myself – albeit the wrong way.

In later years I met up with a very smart acting coach, who taught me how to compensate for speech problems with facial expression, making sure I always face my audience, speech supporting hand gestures and body language in social situations.  These skills are valuable and universal – I even use them on my dogs, who have learned to follow my silent commands and gestures.  I finally understood what was meant by the adage that the greatest part of our communication is not verbal, and I have become aware of many ways in which to exploit non-verbal communication.  A raised eyebrow, shrug of a shoulder, smile or even hands folded together in a mock-curtsy can stand in for ‘thank you’.  I have now learned how to use non-verbal communication skills to much greater effect and I wish all folks with speech problem could learn the basics too – it is simple and these little gestures really go a very long way to make you appear ‘normal’ when your speech is slurred or otherwise indistinct.

I have lost my ability to do formal presentations and public speaking.  It is barely possible for a non-English (first language) speaker to follow what I say over the telephone.  This leads to much frustration on both sides of the phone.  I have become reliant on my husband to handle call centre agents, shop assistants and other strangers when there isn’t direct and focussed visual contact.

Since the partial loss of speech I have stopped making many new friends and acquaintances.  My  ‘old friends’ adjusted to my loss of function over time and they can still comprehend my speech, whereas newcomers have less chance of following what I say.  A level of social isolation has been the result, and I feel that whereas I had previously been able to spontaneously chat up strangers, ‘work a room’  and connect comfortably with people I had never met before, I have become more reclusive.  I have lost some spontaneity and I have less social contact than I would like to have.

My self esteem took a dive when I realised that folks were not that interested in making a effort to understand what I had to say. Some folks speak S L O W L Y or LOUDLY - in the mistaken belief that I am somewhat retarted or deaf.  If you have lived as a leader, as someone in charge, then suddenly being on the receiving end of this type of patronising treatment, is cruel, it evokes an animated emotional response to being disrespected and is not a good start to new relationships. I now regocnize when my anger flares up in situations like these and I breathe and let it go.  But it has taken time - and learning to get to this point of acceptance.  But it still hurts like hell during unguarded moments.

G.  Career Advice and Financial Planning = 1

Today I am, despite a number of university degrees, years of international experience and a keen interest in learning, mostly unable to find work in the South African job market.  Most jobs for which I am qualified require a level of contact with staff or clients.  At the time that I had the first excisions, I was at an earlier stage of my career, and a change of direction at that time could have been managed without too much loss of seniority or income.  Older now, with significantly less function, it is not so easy to re-skill.  I have learnt to write more than before and this has worked well for me.  At present I am building a new career after a few years of hit and miss in a range of areas.  I am excited about this, but I regret the time wasted in trying to make it work in my former career, where I encountered much negativity.

Like everybody else I have to provide for my old age and having to now move into a new career at mid-life results in beginners salaries and often not being able to leverage my considerable experience.  The South African job market is recovering  post apartheid and a frenzy of job reservation for ‘previously disadvantaged’ folks has ensued – it will be a while still before they can shift into gear and focus on jobs for oral cancer survivors.

Career counselling would have benefitted me by getting me to timeously begin study and work in a direction where my loss of speech is not a disadvantage and to allow me to integrate into a new industry and community in order to network and find a place to belong. 

With adequate time to prepare for a career switch,  it I would have managed to make better arrangements for retirement.   A number of fears persist about my old age, which I am coping with by squirreling away as much as I can.  I fear that I will need specialised care at premium rates because I now have unusual oral anatomy which presents a problem with swallowing, being able to communicate my need and cleaning.  My insurance policies do not cover this type of disability and as a consequence, there is now an urgent rush to prepare for the next phase.

Having not had the benefit of career or financial guidance at the inception of my illness has been costly for me and my husband.  Our previous plans were based on living a ‘normal’ dual income life and then retiring to a condo on the beach with our friends.  The shortfall in medical bills that was not covered by our insurance and the years thereafter in which my earning potential has been compromised put a spanner in the works.

I believe that the type of medical insurance cover I had should have changed once I had been diagnosed as pre-cancerous.  My discovery was that my medical scheme did not pay for much of the expensed up to the time I had been diagnosed and became an oncology patient.  My husband and I were still playing catch-up after his medical expenses and although we were insured with what was touted as being the best medical scheme in the country, our personal contributions covered most of the expenses in my pre-cancer stage.  For example, my scheme only paid for one MRI per year – and the cost of these scans are high.  I required up to three scans in one year to track the progress of the lesions and the bulk of these I paid for myself.

So perhaps one’s case manager should include a financial advisor and someone to help with re-skilling or a fresh career start on the support team.  It is difficult for the patient to focus on these matters mid-surgery and mid-treatment, so an investigation of their financial and career opportunities should be undertaken to bullet-proof their future earning potential.

Since I received no guidance in this regard, I score this criterion a one.  The patient’s job is to get well.  If they are like I was, they will not be in a position to research financial alternatives and the guidance of an expert can go a long way to ensure quality of life for the time ahead.

H.  Holistic approach = 3

In summary, when one is in a pre-cancerous stage, it is extremely important to try and co-ordinate all aspects of the patient’s life towards the best possible outcomes – and not to focus only on the area affected by possible cancer.  Patients have to be able to work and live again, as there is life after cancer and one has to believe that they will survive the ordeal at this early stage.  If the progress of the disease is arrested, it is possible that life saving surgery could have impacted normal life and function to such an extent that the patient’s recovery is not all that different from that of a recovering cancer patient.  Educating the patient and their relatives is of critical importance – to manage their expectations and to focus them on being able to get better and to provide for themselves again after they have beaten the illness.

It requires a team of people – a proverbial village – to look after the patient.  While the patient may act and even think normally most of the time, they lack experience in this field, they need coaching, guidance and being taken care of.  Our society has thus far done much to deal with the medical issues – and the number of oral cancer survivors stands in clear testimony to this fact.  But there is room for all to focus on life after cancer.

How will the patient eat, confidently appear in public, clean their mouth, earn a living, have normal relations with loved one and participate effectively in society – all these questions need to be asked and answered and a comprehensive strategy needs to be documented with the patient for Life After Cancer.

In my case, I would have been enthusiastic and motivated about re-inventing my life and choosing a new career, a new appearance, a new place to live – all future-oriented activities which would have made me optimistic and which would have improved my chances of warding off actual cancer.  But I could not have done it without a  support team – a village around me to help me understand what the journey ahead had in store for me.

I made decisions to see different experts on my own.  This was because I began suspecting that not all experts had my best interests at heart. Therefore, I score this item a two, based on the fact that different experts were involved, but their efforts were not co-ordinated.

My next post will cover the first phase of Oral Cancer – my initial treatment, my experiences and  how my family coped with my experiences.