Our lives before everything went to hell

OK, I promised I would tell you how it all started.

I was doing pre-sales solution architecture and working for an American outsource company. I travelled all over  Europe for my job and spent about 80% of my time away from home. Married, no kids. Six wonderful cats and two dogs welcomed me home ecstatically after every business trip.  My husband who worked in IT also travelled a lot – although mostly in Africa. We were doing OK financially and we decided to try for a baby. It didn’t go too well initially, and with my fortieth birthday coming up, we decided to consult a fertility specialist for help.

I had a long trip to Portugal  coming up and we spent the week-end before my trip scuba diving in Mozambique.  It was an idyllic few days – making love on the beach, eating fresh seafood every day,  diving in the quiet clear and warm Indian Ocean waters surrounded by the most colourful array of marine animals you can wish for.  I was looking forward to my trip as I had fallen in love with Portugal, made good friends there and was working on an exciting deal. My Portuguese was improving with every trip and I was feeling confident and secure in myself, in my relationship and in my job.

My husband dropped me off at the airport – a bit unusual for us, because I normally got a limousine to the airport. But this time he drove me, did not only drop me off but he parked the car and walked me in. He waited for me to pass through the gates and waved at me. I will never forget the picture he struck – suntanned, lean, strong and tall. He had a crooked little smile on his face, sort of “I had a really good time with you, come back soon” – and I felt a bit of a glow – it seemed as if the rough spot in our ten year old marriage was over now and I was looking forward to new beginnings – a baby, a closer relationship with my man and lots of diving in the warm waters off the coast of Africa.

As I settled back into the business class seat and ordered a seafood cocktail for starters, I really felt like I had the world at my feet. 

My trip had gone well and I was spending the Friday afternoon clearing up a few loose ends at the office before going back to my hotel to get ready for dinner with friends in Cascais. I had confirmed my seat on a flight to Johannesburg the next evening and was looking forward to a bit of sight seeing the next day before going home .  The Sunday was going to be Mother’s Day and I had just finished two calls to my Mom and my husband, making arrangements for a lunch at our house.  I liked having my arrangements in place like this – made me feel very organised and good about myself.  I made a mental note for myself to pick up a really good bottle of Port at duty free and started closing my laptop.  One of my colleagues invited me for a coffee in the kitchen and I was chatting away idly when someone ran into the kitchen with my ringing cell phone in hand.  It seems that it had been ringing a couple of times.  When I answered a strange man’s voice on the other end told me that my husband had been shot in a carjacking and that he was lying in our driveway at home – wounded gravely.

 They were waiting for a helicopter to airlift my husband to the nearest hospital, and EM Ts were attending to him. He had taken about seven AK47 rounds all over his body and shortly before losing consciousness my husband had asked a bystander to please call me.  I remember listening to the voice as if it was the sound track in a movie playing in the background.  At first I thought he had the wrong person, but he confirmed my husband’s name and address, so I was certain.  I didn’t believe it could be serious – the man had said that my husband managed to call for help on his cell phone – so he can’t be injured too badly.  I ignored the fact of the seven AK47 bullets in his neck, both legs, his stomach, his shoulder. I had earlier in the day told my colleagues about the car jackings in Johannesburg – and almost bragged about how tough we South Africans were to remain – carrying fire arms to protect ourselves and living behind high electric fences. I could remember thinking that these little Portuguese people must be really timid to be so scared of a few carjackers. They had all asked me why we stayed, and I said we were not going to give our country away to criminals – we would stay and fight for what is ours.  They had shaken their heads in disbelief and I had considered them weak.  Although I had been careful not to say anything, I was sure they could read my superior body language.  My Portuguese had been improving, but I was unable to follow most of the excited conversation that broke out after I told my coffee-drinking companion in the kitchen what the call had been about.  He ran out of the room to tell the country manager.  A few moments later one of the older women in the office brought me a cup of sugared water and she lead me back to my desk.

My warm-hearted colleagues took over all the arrangements. They tried to get me a seat on a plane out that evening, but there were no empty seats last thing on a Friday afternoon.  They notified my boss in London and he tried to get the company jet to fetch me, but the jet was in Dallas and it would take too long to get to Portugal.  My Portuguese colleagues were calling airlines, trying to get me on a flight out of the country as soon as possible. At last they decided that the first flight out of Madrid the next morning at 5h10 was do-able, if someone drove me to Spain through the night.   They calculated that I could catch a connecting flight to Belgium and then onward to Johannesburg which would get me into Johannesburg in about 24 hours.

I was in a daze but at the same time in strong denial about the severity of my husband’s injuries. My colleagues drove me to my hotel where I hastily packed and the long trip to Spain started in a red Alpha – borrowed from the country manager because it was the fastest car in the company.  Getting to Madrid was a long drive – we could waste no time if I wanted to be on that first flight the next morning just after five. My colleague drove like a racing car driver, stopping only once for a comfort break and two long cups of espresso. We talked a bit from time to time, but mostly I was in my own private little purgatory.  I made a few calls through the night to the hospital and learnt that my husband had been taken to theatre for surgery.  About seven hours later I managed to get the surgeon on the phone – he was exhausted and told me that things did not look good.  He said my husband would likely lose one leg, that he was unconscious from possible brain injury and that he had entered a stage of multiple organ shut – down. His one lung had collapsed, he had suffered liver and kidney failure. They were trying to pull him through, but his odds of survival were about one percent.  I heard the news stoically, not crying.  I just wanted to get home in time to see him one more time.

I made the flight, had a few more calls with the doctors – all of which pointed in the direction of my husband’s imminent demise.  As I settled back into the seat after take-off from Brussels,c a sympathetic  stewardess brought me a cup of tea and some tissues.  By that time I had found my tears, and they would not stop.  I had been moved to the back row of the business class seats and the other passengers respectfully gave me some privacy.  I asked the pilot to contact the hospital for me, but he was unable to do so and I endured the nine and a half hour flight not knowing what news awaited me on the ground.

As soon as we touched down, I was whisked through customs and my brother in law anxiously awaited me at the side exit. He did not wait for my question but immediately said that my husband was still alive – barely.  He would drive me to the hospital immediately. Another car journey with flashing lights and travelling at great speed got me to the hospital. The ICU in the basement was quiet, only the sound of life support equipment could be heard.  When I saw my husband I did not recognise him.  There were tubes coming out of him, he had bandages on his neck and every limb, he was on a respirator and heart monitor. His beard had been shaved off and he was bruised, full of wounds and he did not respond to my voice at all. I realised then that I this was probably going to be farewell.

OK folks, time for me to go.  I will finish the lead – up to my diagnosis with cancer in the next blog. I hope this context tells you about me and my family, gives you context for where we came from.

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.