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  Some of my experiences are a bit outdated in terms of treatment now.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. 

What this blog spot is all about

Hello. My name is Z - a two times head and neck cancer survivor and at present in remission. Initially I contracted cancer of the floor of mouth and tongue and four years later, I contracted cancer of the throat.

This blog spot has been conceived to share experiences with fellow survivors, newly diagnosed patients, medical experts, loved ones, employers and carers with the sincere hope that they will gain some useful insights into what it is like living daily with head and neck cancers (H&NC). I believe that if you know what to expect before the time, it is easier to confront and overcome difficulties. And it makes it easier to maintain courage and positivity. Because without those two qualities I do not think it is easy to overcome adversity in any shape or form. And most of all, this blog is to share experiences and any innovation, insights or research that might make our lives a bit easier.

Perhaps a conventional cure will not be found for cancer. But as time passes by and we learn more, as we find new ways to pull the monster's teeth, we will beat cancer through our human endeavour and perseverance, and one day ensure survival for all patients.

To the best of my knowledge, no books have been written describing in layman's terms surgical intervention, chemo- and radio therapy of H&NC. Nor are there any books that describe life after that first round of interventions which take us away from life as we had known it into the realms of the unknown. Which is a sad state of affairs indeed. If we don't talk about it, how will the newly diagnosed patients find courage to face this terrifying diagnosis? How will others discover how to relate to us and our post-treatment difficulties? If those who have survived do not tell their stories, who else are qualified to do so?

I need to say at the outset that the experiences related here are my own, and that I do not profess that they are the same as those of other cancer patients or survivors. I am not medically qualified to give treatment advice. Any advice on this blog spot must be treated as anecdotal rather than medically significant and must be discussed with medical experts before you try it. This is more a narrative intended to guide a first time traveller through a scary landscape, and if possible to meet fellow travellers to make our journey less arduous.

If you look at the faces of oral cancer survivors, they are sometimes not visibly scarred or disfigured. Their scars are mostly on the inside, they have survived their cancers but often suffer greatly from the side effects of the life saving interventions that remain with them for the rest of their lives - leaving them choking, drooling, and slurring their words. But if you passed them on the street, you would think they are like everybody else.

The funny thing is that they do not think they are like everybody else. They know about the defects that they carry in terms of hearing, eyesight, speech, eating, swallowing and so on. And because these problems are so present in their every waking moment, they somehow imagine that others can sense it from a distance, or read it in their faces. Some H&NC survivors are badly disfigured and too shy or embarrassed to appear in public. But the rest of them have to find their way back to work, get on with family life and somehow adjust and make do in a world where most other people are normal and do not suffer defects.

So this is the first challenge - H&NC / oral cancer patients and survivors need understanding, sometimes special treatment in the way that some other handicapped folks need wheel chairs or hearing aids. But because their handicap is not in your face, not visible other folks don't know about it, and if they don't know about it, they can't make allowances or help in any way. H&NC - the invisible, deadly and cruel disease that often takes away what the patient needs most to be able to function normally in society - acceptance, compassion and communication. Patients sometimes feel that they no longer fit in to their previous groups - I certainly feel that way.

My speech is impacted and I now am an onlooker rather than a participant in conversations. I find it difficult to share my experiences or ideas with my slurred speech and occasional drooling. And I tire easily from the effort of speaking. Whereas before I was more vociferous, I now appear quiet and withdrawn - not really a fun person any more. As I sit and listen to others talk, I often ruminate about what I would like to say, and sometimes I even gather the courage to chip in a word or two. But frequently I am ignored because no matter how hard I try to articulate, my voice is soft and others - particularly in the heat of an animated conversation - don't hear me. Sometimes they do hear me speak, but the words I form make no sense to them. Then they ask me to repeat myself. And I do. Louder. But loud indistinct and soft indistinct don't make it any easier to understand. Sometimes, after the second or third repetition, someone else feels sorry for me and tries to guess what I wanted to say. They usually guess wrong, but I forgive them because there must be a kind heart behind the action. I put a lot of physical effort into shaping my words. After a few repetitions of the same phrase I am beat and ready to quit. That is why I am no longer much of a participant in conversations. Truth is, it really doesn't bug me any more.  Mostly when you don't speak, you don't get tired, or irritated by having to frequently repeat yourself.  And listening is a novel and illuminating experience for some of us...

Not being able to interact verbally in a meaningful way makes it difficult for strangers to get to know me, and I fall back on relationships with folks I have known for many years. They have some context for who I am or was, whereas strangers don't know that hold several degrees - or that I have a wicked sense of humour and used to be a 'party girl'. They can only react to what I present - and it is not always easy for them to move past the slurred speech to find the real person hiding in there.

I experience isolation most in my relationship with my husband. We both get impatient when he can't understand what I am saying. He often accuses me of not communicating properly. This makes me angry. Trying to argue back when you don't speak well can be a frustrating experience. In the end you either want to scream like an banshee or you go quiet, allow the anger and feelings of impotence and futility to consume you from the inside.

Our relationship has moved into a new place. But it is not a nice place.

I do have a few good friends who contribute to my life in a very positive way. I think they also struggle to understand me at times, but they have realised that repetition is difficult for me. They may only get half the story when I talk, but they make an effort to keep up. They understand when I am tired and would rather listen to them talk. I am so touched by their compassion every time I see them that I want to move mountains in gratitude for their kindness.

I compensate by writing. E-mails, sms's, blogging. I have taken up photography. There are many ways to say what you want to say. This is what my blog is all about - how to adjust, rehabilitate, find new ways of doing what you used to do in another way. And maybe some of you reading this blog will have advice they want to share.

But I am running ahead of myself. In the next post, I'll tell you about how it all started.