My husband
C, had been hospitalised after being
shot several times in a carjacking in May 2000. C was unconscious in ICU, had multiple open
wounds awaiting further surgery, skin grafts, bone grafts and prosthetics. Apart from his injuries, his body was
fighting a very bad infection from dirty bullets – he did not seem to respond
to any of the antibiotics the doctors tried.
Things got worse as he went into theatre daily for wound debridement,
skin transplants and the infection raged on. He became jaundiced and his body
bloated with fluids as his kidneys seemed
to be losing the battle. At some stage
the doctors called me in and asked for permission to amputate his left leg,
because his injuries were so severe that he would never have normal use of it
again. I asked C’s family for advice and
we all agreed to wait a while before the amputation as yet another operation
could be fatal in his already weakened
state. The chief surgeon spoke
kindly to me, saying that there was no way of telling if or when C would regain
consciousness. And if he did wake up, he
had certainly sustained brain damage which could leave him severely challenged,
unable to work or look after himself again. The next two weeks would be critical
and if C survived those two weeks, he stood a good chance of surviving this
ordeal.
Having a
loved one in ICU is like a trip on a roller coaster. One day their vitals seem stable,
the next day they plummet as a new bout of infection invades or as another
organ malfunctions and weakens. Some of
the germs came from the bullets, some from the hospital environment. C’s many open wounds certainly did not help. He was too weak to consider a leg amputation or the
various skin flaps devised to cover his gaping wounds. There was a hole where his right clavicle
used to be – big enough for my fist to
disappear in. The team of doctors
assembled to save C’s life included a trauma surgeon, a vascular surgeon, a
neurologist, three bone guys, a
specialist physician, and other folks that came in from time to time to check
on his kidneys, his nerve functioning, joint mobility and a host of other
compromised areas. C had lost so much blood in the
first days – when the first bill arrived I opened it and saw that it was
a bill for forty six pints of blood. Apart from the fact that I had no idea
previously that blood was that expensive, I could not fathom out how a human
body could use so much blood in a couple of days. I felt nausea rise in the back of my throat
- I was literally sick with worries, I slept in a
chair by C’s bedside in the ICU and only went home for a shower and change of
clothes. I knew I had lost weight – my jeans hung on me
like they belonged to my bigger sister.
I was
staying with C’s parents as the house was still a crime scene and police were
busy processing the site. I looked in every
day to see the animals, and our gardener did a fantastic job of sweeping up the
sixty plus shells that littered our garage and driveway after the police had left. Some kind neighbours had placed soil over the
large pools of blood where C had bled on the paving. The garage looked like the photos I had grown
up with of buildings in Beirut. C’s
silver BMW with it's seventy odd bullet holes was a write off - shattered glass and blood inside made it difficult
for me to retrieve his personal effects before the tow truck came to take it
away.
Something strange
happens when people are in crisis. We seem to shut
down at the emotional level and become an automaton, a machine that simply executes one
task after the other. I faced a barrage
of administration, bills, logistical arrangements, spent most of my time the hospital
every day, cared for the animals and
dealt with phone calls, the press, police, investigators from my employers, C’s
contracting employers. I ran out of
money within a week or two as C was a contractor and had no insurance. The
medical insurance I had was not intended to deal with airlifting, excessive
amounts of blood, life support equipment, prosthetics for missing bits of leg
and so on. I had meetings with people I
owed money, the bank manager, the medical aid - and appealed for ex Gratia payments - while all the time still not knowing what was
going to happen to my husband.
After the first two weeks had
passed, I realised that I had missed a period, but I did not think that
was too strange, given all the upheaval.
I felt ill most of the time, my body was stiff from sleeping in a chair
next to C’s bed and I was never hungry.
I made a decision not to have C’s leg amputated for the time being and I
received the first bit of good news: the doctors said they had the infection under
control. I started a newsletter to keep
our friends and family all over the world updated on C’s progress. It became
therapy to me.
C could now
start surgery to close all the wounds and to affix an external fixator
on his left leg, which was missing most of the bone between the ankle and the
knee. A large skin graft was initiated,
he was sutured up, drains were placed in the operation sites and I could sense
the slight relaxation in the staff that attended to him. He still had a nurse sitting by his bedside
24 by 7, but she occasionally asked me to look after him while she stepped out
for a few minutes. I did not feel
tired, but I sometimes felt overwhelmed by all these events. I knew my husband had been hit by seven AK47 bullets and that he was about to lose a leg, that he had already lost a meter or more of his intestines and would possibly not have use of his right hand again, yet somehow rather than being devastated by all this, I had become used to this new state of affairs. This was now the new set level for carrying on forward. I reflected on how very lucky he was not to have taken hits in major organs. C’s
elderly parents tried to help out when I moved back home – they invited me for meals
and they offered to visit C in the afternoons so I could spend time at home dealing with
bills, press, the police and all the other important things that needed doing. C’s brother in law came to put new locks on
our doors as we could not find C’s keys and feared that his attackers might
have made off with them. I slept
fitfully if at all when I was at home. Mostly
I was fearful of the attackers returning to harm me, and I was plagued with
nightmares about C’s return from hospital in a baby crib shaped like a
coffin. I did not sleep in our bedroom
and napped on the couch in the TV room.
A friend in
Portugal had sent me an incense holder blessed by the Pope at Fatima and I placed
this next to C’s bed. I did not know
what or who I believed in any more, but I would pray to anything if there was a chance of C healing as a result of prayer. My employers were sympathetic
and gave me two weeks' compassionate leave, after which they expected only a couple
of hours’ work per day from home. I did
my best to cope as I had no other form of income and the future loomed uncertain.C seemed to be on the mend. Over the next weeks his vitals stabilised. I sometimes feared the moment he would wake up almost as much as I had feared his possible death. I did not how I would cope with a man with severely compromised brain function. The doctors said they expected him to open his eyes some time in the not too distant future.
Life settled into a routine of sorts. I spent nights at home, mornings at the hospital, afternoons I worked and took care of responsibilities and in the evenings I sat by C’s bedside. The doctors encouraged us to talk to him, so I spent every evening telling C all about my day. I put a photo by his bedside of the two of us taken a few years before in front of the Sphinx in Egypt - and I promised C that if he pulled through we would go on a safari from Cape Town to Cairo by 4X4 vehicle to celebrate his recovery. I dared to hope that he heard and understood me, although he gave no sign of it. Somehow I believed that if I could come up with a sufficiently enticing idea, he would sit up and talk to me.
One morning as I stepped out of the shower I felt dizzy and came round a few minutes later lying on the floor in the bathroom. I had never fainted before so I took myself off to the GP. Nothing could have surprised me more that the news that I was pregnant. It was the one thing I had dreamt about for so long, and now that I had completely forgotten about all dreams other than those of C’s recovery, this news arrived. I did not feel joy, only fear and panic. I imagined having to look after a baby, earn money and care for an invalid. A fist of steel clenched at my throat and I felt like a deer caught in the headlights. My fears were around finances mostly, and how to cope with a baby as well as a job. I felt overwhelmed by what was happening, I knew that the road to recovery for C would take years – and it was uncertain if he would ever be able to work again. As I sat in the doctor’s room I made a decision. This baby could not be.
It was a week later before I eventually came round to having the pregnancy terminated, and I did not talk to anyone about it. Looking back today, I deeply regret the result of my actions. But I have found the grace to forgive myself after many years of self recrimination and loathing.
The office
required a quick trip back to Europe and I flew to Portugal for a week
while C’s condition continued to improve.
Two days after I arrived back, he opened his eyes during visiting
hours. He seemed to know who I was although
he could not speak because of the tubes in his throat. That was the turning point, the place where
the real journey to recovery started for C.
I was delighted when he moved into a regular ward about three weeks
later. He was unable to walk and was
undergoing surgery regularly to repair his bones and to complete skin
grafts, but he seemed to be functioning all right. I could not tell how much he
really understood – he was quiet and subdued. He cried a lot. But I suspected that his mind would be
OK.
I had to go
see a doctor again as it seemed as if I had accidentally bitten my tongue and
the injury was taking its' time to heal. It was a small lesion, nothing too
painful. The ENT surgeon took a look and
suggested I pop in the next day to have it excised in theatre, he said it was a
simple procedure - I would not even have
to stay the night. He was right. I went
home after surgery and forgot all about it.C was discharged from hospital about a month later. He came home in a wheel chair and I soon realised that dressing wounds, bathing someone too weak to sit up by themselves, preparing meals and trying to do a few hours’ work every day was a tall order. I had to learn how to pick him up. C was so pitifully thin that it was possible to bruise his skin by the simple act of putting on his undershirt. His bladder took a while to recover from having had a catheter in for so long and the house had not been designed for a wheel chair. He was fragile, tearful and utterly helpless. I felt deep compassion for C and vowed to do all I can to get him better. I did not think of the word love, only of fixing him so he would not be broken anymore.
My brother in law and my father constructed ramps and handles to make things easier with the wheel chair around the house and my mother in law came to visit every day to help me feed and care for C. There was also the daily visit from the physiotherapist and streams of well-wishers and friends dropping in at all hours of the day. After a while I was forced to institute visiting hours in the afternoons only. It became a challenge to get C bathed, dressed and fed before the visitors arrived. Most days I was still in my pyjamas at noon when the doorbell started ringing. When a local reporter came to do a follow-up story, I opened the door absentmindedly, having completely forgotten about the appointment and still wearing my dressing gown. A pair of baggy sweats and a dirty t-shirt became my uniform for the next few months. I sewed C a couple of pairs of sweatpants with Velcro openings down the side of the leg to accommodate the fixator as shop-bought trousers could not fit over the external frame.
C continued having surgery regularly to grow the missing bone in his leg over the next fourteen months. He managed to get himself around in a wheel chair and later on crutches. The doctors were using an Ilizarov apparatus to grow the missing bone. This was a slow and painful procedure but C was willing to persevere as this meant that he would not have his leg amputated. I felt like I was barely holding on. C’s mind seemed fine. He could remember everything of his former life, he was as good with numbers as he had ever been. But I sensed that the man I had married had left. I had to get to know this new person I now lived with. As time passed, he stopped crying and become emotionally distant. I hoped this would be a passing phase.
About six weeks after the initial surgery to my mouth, another bump appeared in the middle of my tongue. I ignored it for a month or two but eventually it became really sore and I returned to the surgeon, who excised it and sent it off for analysis again. He said that the results showed that some of the cells had changed in structure – they were not behaving like normal cells. But these little cells were not cancerous, and we should wait and see. He had excised quite a big piece around the bump this time and it took longer to heal than the previous excision. The site was painful and I started taking pain killers. Pain killers did not go too well with my schedule, but somehow we managed. My tongue felt stiff and heavy and I realised that my speech was a little slurred at times.
As C came out of hospital after the seventh operation to extend the bone in his leg, I had to go for yet another excision to my tongue. This time the surgeon planned to split my tongue down the mid line as it seemed that the cause of the lesions was at the base of my tongue in the floor of my mouth. I was in pain often and talking took great effort. I had graduated to opiates and still the pain was ever present. My work was suffering, as I had to frequently do presentations – and this was a challenge in my situation. The surgeon did not volunteer much information, but after I asked he said I might experience minimal loss of function of my tongue and that my speech might be affected a little. He jokingly said that if my friends could not understand me I should tell them to have another whiskey.
I woke up after the surgery, barely able to breathe and with a tongue swollen to about double it’s normal size. I panicked wildly as I was rushed back into theatre for an emergency tracheotomy. The second time I woke up with a tube down my trachea and unable to speak. I felt no pain – thanks to the ICU’s policy of providing morphine on demand. What surprised me most about the three days in the ICU was my extreme depression. I cried most of my waking hours. I feared that the news from the biopsy would be bad and my tongue was swollen, thick and oozing blood and lymph fluids into a drain. I wrote desperate messages in an attempt to convey my fears to C who came to visit me often. He just looked at me – completely at a loss as how to deal with this situation.
When I went home I realised that my tongue’s function had been compromised beyond my expectation and that people now found it difficult to follow what I was saying. I had to change my eating habits and I virtually lived on meal replacement shakes. This made me gain weight but left me with little energy.
I had a few more excisions after this one and then I changed surgeons at the insistence of my dear friend A. I ended up at an emeritus professor of ENT who was kind and who did not believe further surgery would achieve any substantive relief. He nursed my scarred tongue back to a state of healing and he held my hand and told me everything was going to be all right. He prescribed anti-inflammatory meds and told me to relax, take it easy at work and to give nature time to heal my scar tissue. It turned out that his compassion did more for me than the previous surgery in terms of pain relief.
Prof M and I settled into a comfortable relationship. He was conservative and warned that surgery could spread and broadcast whatever was causing the lesions to appear. He monitored the changes in the structure of the cells and one day calmly told me that I was in a pre-cancerous stage, but that we were going to try and maintain the status quo for as long as possible. He gave me hope that things might fix themselves if I lead a healthy lifestyle and looked after myself. We weaned me off the opiates and for a while life was fairly good.
The next year also passed without much excitement. C and I were both out of surgery and both working and healing slowly. He had found a job – the first one in over two years and my boss was allowing me to work from home on a regular basis. C eventually dropped his crutches and started walking his new duck-like walk – with a pronounced limp. He was not active at all – could barely manage to walk twenty paces. When he sat down, he found it difficult to get out of the chair again. This resulted in me bouncing up and down most of the time to fetch things for him so he would not have to get up. We were both only too happy that his leg had been saved.
I noticed the pain increasing again at the base of my tongue and went to see Prof M for advice. He announced that he would like to do a Supra-Omohyoid Neck Dissection to deal with what seemed to be a very persistent thyroglossal cyst. He warned me about the further impact on function of my tongue and mouth, as well as my neck. He told me that the operation represented relatively small risk to my life and that my recovery should be good. I agreed to proceed.
Two days later I was in hospital with the understanding that this operation would sort of cut open my neck, take out the bad tissue at the floor of my mouth and then close it up again. I awoke after surgery, not feeling too bad. I had a very long cut which went almost completely around my neck and I had more staples than I could count in the mirror. Prof M looked in on me, saying he thought the operation had gone well and that I could go home in a couple of days’ time. He didn’t think there was any malignancy present in the tissue he had excised, but he had submitted some of the excised material to the pathologist and would let me know in the next day or two what they had found.
I went home and noted some degree of function missing from my speech and swallowing, but with post-operative swelling, drugs and still being a little tender from the long cut and staples, it was hard to tell what would be permanent and what would pass with time. I had to go back to the doctor after a week to have my staples removed and only then realised that Prof M had not come back to me about the pathologists’ findings. I dismissed the thought – if it was serious, he would have called.
My husband had to drive me to Prof M’s rooms as my neck mobility was not yet sufficient to permit safe driving. As we sat down, Prof M cleared his throat and said he had some news which he needed to give to me face to face. What had been removed from the floor of my mouth was all or part of a squamous cell carcinoma. It was a fairly large one, and it was dangerous. Prof M had made an appointment for me with a radio oncologist that afternoon and I had to start treatment the same week.
My world seemed to implode in front of my eyes. I asked about survival rates, treatment alternatives, but in reality I was just going through the motions. In retrospect I suspect I was trying to find a modicum of control in this runaway train. Inside I was screaming “Why me? What have I done to deserve this? What have I done wrong? Why am I being punished like this?” Funny how my years of Calvinist upbringing found a critical voice at a time when I needed to love and care for myself.
I left the doctor’s rooms feeling weak and clinging on to my husband’s arm, completely lost, vulnerable and without hope. I think the diagnosis of my cancer is the single most devastating sentence I have heard in my life. We are never prepared for it, no matter how much we have researched or read about it. I felt as if a giant hand had flattened my body against the earth and permanently knocked the breath out of me. I thought I was going to die.
I have talked to experts about what causes this type of cancer in the years that followed. It can be related to lifestyle, it could be predisposed by human papillomavirus. What I know is that under the extreme stress of my husband’s shooting and subsequent road to recovery, all my resources were spent in trying to keep things together, and I had no reserves left to fight bad cells. I had suffered from mild depression since the onset of pain in my tongue, and I had been self medicating every night with a little alcohol to take the edge off the pain in my mouth. I would like to think that if I had known then what I know now, I would have laid off the occasional cigarette, the drinks after work, the stressful career and trying to cope on my own with all the difficulties after my husband’s shooting. I might have asked for help, or accepted some of the offers, perhaps kicked back in a job that was not so demanding. And I would have been kinder to myself, allowing myself to have fears and to make mistakes and to be imperfect without thinking that I was a failure or had done the wrong thing. I think that is the lesson I needed to learn.
In my next blog I will indulge in some more reflection on what I and my medical support team could have done differently. I want to share with you the lessons I have learnt and what my doctors know today which was not common knowledge at the time of my pre-cancerous phase. And I will share what worked and what did not work in the next months as I started my radio therapy sessions. I hope you will find it useful to read, as I speak from the heart, not holding back and being quite naked about all facets of my experience.
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