The cancer came back. Ally is still 2 rounds ahead.

 Can you believe it?  After having had the partial new jaw construction, and living a good life for a few years, I went through a bad patch of heartburn and ended up going for an endoscopy which revealed that the cancer was back in May of this year.   I was devastated, and had really not expected the cancer to return after all these years.  But it was back.  And I was ordered to undergo 31 sessions of radiation, plus a weekly sessions of Chemo.

I think at the outset I thought I was going to be OK.  There was a bit of denial still floating around, but I was well into the treatments and could feel my taste starting to disappear. It was difficult to swallow, so I know things were happening.  But on a Sunday morning in July I woke up and started bleeding. Not a nosebleed or vomit. About one and a half litres of fresh red blood from the tumour in my throat.  I did not know if I was going to bleed out or survive it, but I still here, so you know how that went.

It was the middle of COVID, so the emergency services of my local hospital would not admit me. They treated me superficially to stop the bleeding, but did  not balance electrolytes, restore saline or take care of other possible damage.  I lay there until my COVID test cleared six hours later. During that time I had a stroke.  My left neck carotid artery became completely occluded.  Bit this would not come to light fir another week or two, when 'floaters' started showing up in my vision and I felt weakness on the left side of my body.

I eventually got transferred to Wits Donald Gordon medical Centre (WDGMC)  and they gave me good care and platelets and washed the blood off me that I had been lying in for almost an entire day.  What I describe to you now in hindsight was not known to me at the time. I felt strange but had no idea what had happened or how it would change the very core of my life.

Over the next five weeks I stayed at hospital, had tests, treatments, and thought I was getting better.  Initially I was treated for aspiration pneumonia.  I resumed and finished my radiation and chemo treatments while in hospital to minimize the possibility of another bleed. Had physio therapy, had many scans and discovered that I had had mild thrombosis.  I learned that I had suffered some physiological change from radiation / episode which caused me to aspirate my food. Permanently. I was given a feeding tube up my nose which would later be replaced by a series of PEGs, none of which ever seemed to be the right shape, fit or type to accommodate me. I never ate again.  The adjustment I was going through was intense.

My husband had been home packing up the house as we had just sold our house and were supposed to move to France - my long term plan for 'retirement'.   He found it hard to cope. He had to pack up the house, wrap up the sale and move our possessions to France, where we have a small house.  I could no help him pack as I was in hospital. I still have no idea what to expect when the container is opened one day  - it will be interesting.  Our pets were in distress and I lost my favourite cat because my husband overlooked serious symptoms of ill health in her.  We  later lost a dog.  After five weeks I was sent home.  My Peg was not comfortable. Over the week I spent at home the Peg started leaking and I went back to hospital to have it fixed.  While in hospital various little problems cropped up.  I slowly started losing my voice.  My husband went to France. I stayed in hospital and a friend offered to put me up when I can out. She also took care of my three cats and a dog. 

I was frail and the hospital did not know if they could let me go because of the problem with blood thinning. In the en they let me go home. Two days layer I had another bleed at my friends house and went back to hospital for five weeks. They ended up deciding not to give me blood thinners again as this would possibly cause another bleed.  By now I was thoroughly sick of hospitals, but still hopeful that with time I might be able to swallow again. However I ended up with aspiration pneumonia again and it became clear - no swallowing.

When I came out of hospital after another five weeks, my friend was overwhelmed by my fragility and immediately asked me to find alternate accommodation.  I have been exploring options and thinks something else is now lined up for the next time I attempt to leave hospital - a step-down facility.  The hospital say I have been treated for that which I had been admitted. But I have picked up a few complications along the line. I got TB - presumably from my weakened immune situation.  Six months of treatment to look forward to.

A week ago a spontaneous stoma opened in my neck. Just a big hole. I was very near panic.  I have since learned that it may be able to operate the stoma, but success rates are not high.  One of the oncologists have arranged hyperbaric treatment for me to generally get well - and hopefully stop the rate of growth of the stoma.  This all starts tomorrow.

I think you have caught  up with me now.  I will post here and let you travel my path with me for a while. If you want to comment. please go ahead. 

The new normal

Experiencing first the diagnosis, angst, surgery, chemo and radio therapy, and then the loss of taste and appetite, nausea, mouth-on-fire, weight loss, and the fear-filled days anticipating the first scan, can feel like existing in the shadow of a dark cloud.  Then one day the rays of sun break through the dark cloud.  The scan is clear, or at least improved.  And emerging from that deer-caught-in-the-headlights state, the place of decision abdicated to medical experts, where every day was just about putting one foot in front of the other, the world appears a bit distant and unfamiliar, but unchanged and normal.  The cancer survivor is however, no longer the person they used to be.  For them there is no return to normal as it was before Head and Neck Cancer.   After surviving cancer, one's first challenge is to discover that there is no going back to normal, and then one has to learn what is one's new normal. This realization is however, helped along by the weakened state of one's post-treatment body, a bit of chemo brain, and by living in a society not versed in welcoming back cancer survivors.

Adapting to change is integral to surviving cancer. First is adapting from being healthy to having cancer, and feeling sick. Then adapting to the daily treatment regimen, being dependent on others for help and healing, and the side effects of treatment. The next change is to adapt to not being a patient anymore, and recognizing that one is now a cancer survivor.  This is a difficult stage, where one has to integrate back into a familiar society, but with limited or altered abilities. 

One can always tell when someone is in those first months after treatment, because their faces and attitude radiate a state of grace.  At that point, death is no longer the enemy, they have made peace with what they did or did not do in life, and having been granted an extension of their life is an almost unexpected surprise - when it comes.  The look on the faces of people in this stage of recovery is a mix between saintliness and terrible fragility.  They are normally so thin, often without hair, skin pale and translucent, punctuated by fading (red) radiation burns.  They tend to be quiet because they have become accustomed to being in pain, and no longer need to mention it. The stage of grace doesn't last longer than a couple of months. Sometimes it is followed by death. Sometimes it is followed by recovery. This stage is an in-between waiting room or staging place between the realm of cancer and what follows it.

The fragile post treatment survivor has to somehow find their way from the stage of grace to ‘the new normal’, and get back to living life with their responsibilities, friends and loved ones as best they can. This means unlearning to be dependent on others for most things, no longer referring to themselves as a patient, or someone having cancer,  and gradually finding out about their changing physical and emotional abilities and limitations on the road to recovery.  For example, difficulty with swallowing, and pain from oral surgery and ulcers, tend to change one’s eating habits and preferences.  If the survivor presents with a dry mouth, they may experience anxiety and panic at not having a full water bottle in sight.  If their speech has been affected, they could find it very challenging to learn how to gesture, write, or otherwise supplement their verbal communication.  Dealing with the phone can be a challenge if the other party can’t make out what they are saying, and a preference for e-mails and texting soon becomes normal.  They may experience (often unintentional) cruel treatment at the hands of strangers who cannot understand them.  Uninformed people sometimes attribute speech problems to something the cancer survivor did wrong (internal attribution) – like drinking too much alcohol, or abusing drugs.  Sometimes, uninformed strangers treat them as if they have a mental or cognitive disability - speaking down at them, talking slowly and using simple words.  Dealing with frustrations like these soon become normal, and the cancer survivor would be well advised to take this in their stride, and otherwise not to react to ignorant remarks.  If their treatment involved surgery rendering them without speech, learning to communicate without speech, and carrying a slate or pad and pen when leaving the house becomes normal. Reliance on one's spouse or partner to answer questions can become the easy way out, indicating the arrival of new responsibilities in the new normal for our loved ones.

Eventually the state of grace moves on, and things change again. Progressing on from mute acceptance towards gradual return to society, one has to start being a whole person again. Being counted again. This is the stage I call ‘taking back’ whatever is possible.  Sometimes this can feel a little disorienting and strange. This is a time where the survivor ought to tell strangers to listen with more attention, rather than accepting the blame for not speaking more clearly.  This is the time when one should ask friends if they would mind preparing something soft to eat, or to be mindful that cancer has limited what the cancer survivor can eat.  This is the time the cancer survivor can say when they would rather not explain yet again what happened to them. 

 Taking back at a physical level means that it is very important to continue with visits to the physio therapist and speech therapist – for mobility, speech recovery, swallowing assistance, help with releasing scar tissue post surgery, and other specifics as the case may be.  At the time I was recovering from cancer treatment, less attention was paid to this aspect of rehabilitation, and I regret not having had the benefit of swallowing therapy at this crucial time.  Today, a TENS machine is used to electronically stimulate the muscles in the throat, and therapists teach the survivor how to swallow.  A little training goes a long way.  They teach for example, to ignore the natural instinct to throw one’s head back to help with moving the food down the throat.  It is easier to swallow dropping one’s chin down to one’s chest.  Also toast is easier to eat than bread – the coarseness of the dry crust grips better on the inside of the throat to move down than bread, which forms a dense ball and then gets stuck. These therapists represent a wealth of useful information.  If  therapy doesn't quite get you there, be willing to do workarounds, as I still do, and eat before going out to dinner, so I won’t have to splutter and choke my way through a meal in front of company.

Work-arounds extend into practical everyday change and adjustment. Speech-wise, one generally does better at early morning conversations, when one is rested, than late in the day appointments.  I find that my speech and head and neck muscles get tired from about noon onwards, and then I don't pay sufficient attention to articulating well.  If I have to meet with strangers or clients, I schedule it for earlier in the day. 

   

Taking back responsibility like shopping, fetching and carrying the kids, entertaining, chores around the house, dealing with finances – these should be gradually resumed too.  But don't forget about chemo brain – a state of being less than fully alert, easily distracted, being forgetful at times.  Chemo brain is a bit like pregnant brain.  There are things going on in your body – relating to healing and recovery, which take away resources from certain mental activities.  This is not a bad thing, and it seems to pass within the first six months, but this is not the best time to make life altering decisions. I remember asking my husband to check my calculations, and proof-read my customer communications at this time.  He spotted quite a few serious errors which we were able to fix before it was too late.  It is good to start with small tasks and gradually work up to where one left off before treatment.  It is normal to feel a little frazzled after treatment, but the feeling does go away.

On this road back to recovery, regardless of which stage you find yourself at, take time to smell the roses.  Spending time in my garden, taking week-end breaks away with family and friends, meditating, reading, and later on immersing myself in writing and photography, helped me to regain equilibrium after treatment. It took time for my body to heal and feel strong again, and I learned that being patient was better for me than wondering when things would get back to normal.  Feeding the soul is as important as nurturing that thin body back to health. Being in nature worked well for me, but even here I had to make a few changes. My new outdoor normal apparel included an array of scarves and hats – both for protection against the wind and sun, and to help disguise my scars before I learned to be proud of them.  When I was recovering after therapy the odd dizzy spell had me fearful of falling over, and I never felt the need for wearing high heels again.  Flat shoes are safe. I recognized that I need to do things that make me feel safe. 

I go to bed early.  After treatment I suffered many months of fatigue while my body was recovering from particularly radio therapy. Some days worse, some days better. I took afternoon naps then, it was good for me to sleep.  I still have naps almost a decade and a half later, although fatigue nowadays is mostly from talking and eating.  Sleep helps to re-build the body. 

In the new normal I am kinder to myself, try to have less physical and emotional expectations of myself.  I still overstep my limits sometimes, but it is simpler not to push too hard.  When I push myself too hard, I usually end up getting overly tired, stressed, irritable, and my immune system takes the brunt of this, which makes me susceptible to viral infections and injury. It is no real kindness actually, it is just being practical.  Nobody likes to be sick if something can be done to prevent it. In relationships and interaction with others too, I find that keeping things on an even keel serves me better than extremes in emotion. Stress does not serve me most of the time, so I tend to avoid it.

In my experience, new normal comes to the cancer survivor over time - if the cancer survivor is open to this new experience.  I did not always think this way, and spent years trying to return to my previous normal. As you can imagine, I ended up disappointed, angry, resentful and very unhappy. Therefore,  I encourage cancer survivors and their helpers to be aware, to be patient, to be kind. Don’t expect things to go back to what they were before.  Cancer changes us all - survivors and those around them too. 

It is good to reflect back on your journey thus far, to recognize the resilient person you have become, recognize what great stuff you are made of to have overcome all this. You are a new and different person to who you were before.  You have been tempered like precious metal, and joined a very select group of individuals. Most people have not survived what you have. You are extraordinarily brave and strong. Take time to value yourself. You are not ordinary.

Next time I’ll catch you up on what happened when I got osteo radio necrosis of my jaw.  Until we talk again, be well.

Are you wondering what happened to me and what caused my long silence?

The short answer is that I had to take time out to overcome serious post treatment complications of radio therapy.  I now have a brand new jaw - Bionic woman and all that.  I have joined a great support group. You will be introduced to some of them in future posts.  Getting lots of pretty new teeth, and I am in the process of getting a great new smile.  Will tell you about my reconstructive journey in future posts. 

Reflecting on what I have blogged so far made me ashamed of my self indulgence and lack of expressed gratitude.  I need to apologize to you for having been so self absorbed. Although the process of writing about my experience was cathartic to me, it was intended to share experiences with you for information sake, and sometimes, I overstepped the line.  You were kind not to comment about it.  So no more pity parties - I promise.  I am still here, happy and functioning reasonably well.  Along my journey I have met some incredible people, and I have pushed my own limits.  As a pioneer for some treatments, I have contributed to the body of knowledge in treating Head and Neck Cancer.  I have l discovered that there is virtually no end to what a person can overcome with loving support, hope and a positive mind.  For all these things, I am truly grateful.  The biggest lesson I have learnt is that while I can’t always prevent or change adversity or bad things that come my way,   I alone make the choice about how to respond to it.  This is a very empowering insight to me, and I hope to share more of how it works in the future.

Upon reflection, this really is what my blog is about:  it is the story of how I have twice grappled with Head and Neck Cancer and the side effects of the treatment  - so fellow travelers on this road can know what experiences may come their way.  And his is also where I share the lessons I have learnt to overcome adversity.

Two points I want to make because they were omitted from earlier posts:  I first had cancer in the early 2000s.  At the time many protocols like removing teeth before radio therapy, peg placement for swallowing, swallowing treatment (TENS machine electronic stimulation) and others, were not yet common practice.  Some of my experiences are a bit outdated in terms of treatment now.  I will adjust my narrative accordingly.  Today, there is more of a willingness to embrace a multi-disciplinary team approach in treating Head and Neck Cancer.  The support group I attend is a shining example of this.  Research is now indicating that patients who benefit from such a team approach recover faster, have a better chance of long term survival, and seem to get back to ‘normal’ life a lot quicker that those who do not benefit from the multidisciplinary team treatment approach.  My support group give credit to pioneer patients for having contributed to the wisdom of such an approach,  and I am grateful to see how much better patients are dealing with the journey now.

The second point is potentially great news for sufferers of dry mouth.  My one saliva gland spontaneously revived itself about three years after being ‘zapped’ by radio therapy.  This means no more dry mouth or xerostoma.  This I am told by medical experts is not a once-off occurrence, as saliva gland recovery is becoming more prevalent in the survivor community.  As I explained before, there seems to be two types of saliva glands, one type with thick or viscose saliva, and the other being a bit more watery and runny.  The gland that revived itself in my case is the more watery gland.  This is really great because I no longer wander around with a water bottle attached to my hand like and extra limb – although I drool a bit now and then, mostly when eating or drinking.  There are times when I do have a dry mouth, but that is more an external matter, when my mouth is open as in panting from a run, or when the dentist has a dam in my mouth to work on teeth. 

At the time that I got dry mouth, the best brand around was the Xerostom toothpaste, oral gel, and mouth rinse.  I still think these products are effective, and there seems to be a great deal more of them available now.  But this is perhaps a good time to share a tip that helped me when I had a very dry mouth.  I used few drops of olive oil in my mouth,  and in my bedside glass of water at night.  The olive oil lubricated my mucosa and I got used to the taste.  My mouth was reasonably comfortable when I woke up in the mornings, and the olive oil prevented that totally parched and encrusted inside of the mouth feeling.  When I woke up at night needing a drink, I had some of the water with olive oil.  I shared this advice with a friend, who having tried it, says he now swigs olive oil directly before going to bed, swirling it around in his mouth and even swallowing some of it.  This apparently worked very well for him.  It seems that the olive oil also contributes to soothing inflamed mucosa.  

As I am not a doctor, I cannot recommend this as a cure, but I can say that olive oil has helped me manage dry mouth at night, and others I know concur.

It is great to be back at blogging  I have missed you.  The folks out there who react to my posts add interest to my life.  Thank you for reading my blog and tweets. Watch this space for a new post in the next week. 

Hi, I'm back

So you probably thought the big C got me didn't you?  It did not. I am alive and well and better than when we last spoke. I'm going to try and catch you up on my journey over the next few weeks. I have had many experiences, surgery, reconstruction. And I want to tell you all about what worked well for me and what did not. I am now one of the longest surviving HandNC patients in my area. This has allowed me to observe a great deal of how the advances in medicine impact the journey of fellow travelers on the road to recovery or elsewhere. And of course, I have had some learnings to share.
I will need a few days to structure my thoughts and pick up the thread. Talk soon!
Z

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.