Archive | October 2014

Hanging on by my fingernails

The following morning early, the cardiothoracic surgeon came to see me. The plan was to drain the right side of my chest cavity first since that side had the most fluid build up. They wouldn’t be able to drain both sides at once because that would put me at too high a risk of having a pulmonary embolism. The nurses put embolism stockings on my legs and I was then given a sedative before being taken in for surgery. Lying and waiting for my turn in the pre-op area, I prayed harder than I’d ever done before…or have ever done since. I remember repeating over and over again in my head, ‘Please God have mercy on me, don’t let me die…I’m not ready to go anywhere yet. You know my girls still need me too much…don’t do this to them.’

Finally in surgery and on the table, there was an incredible amount of activity going on around me. Instruments being prepared, doctors scrubbing in and donning surgical gowns. I wished at that point that the sedative that they’d given me before hand was stronger so that I wasn’t so acutely aware of all the fuss. Then I realized that I was in complete survival mode. There was nothing any sedative could do to put me at ease. I closed my eyes and thought of two things. The letters that I had written to my girls the night before my admission. I’d told them that it had been an honor and a privilege to be their mother if it was only for this brief period of time, and that I could never express how sorry I was that it had to end so soon and especially like this. Then my mind drifted to the promise I had made Jaco on the same night…that I would keep the promise we made to each other on our honeymoon of going back to Malaysia for our 20th wedding anniversary, which was still 6 years away. I knew that those two things alone would give me the incentive to fight to stay alive.

When I came around again afterwards, I was in recovery. I was so hoping that the first procedure would make a difference to my breathing, making it easier. It didn’t. When I was back in my ward, they took my blood pressure and blood oxygen saturation levels. Realizing that my oxygen levels were critically low, they propped my bed up so that I was in more of a seated position and then put an oxygen mask over my mouth and nose. It was not long after, that the pain started rapidly catching up with me. I had a tube coming out of the right side of my ribs for drainage purposes. The pain was of a sharp, burning and searing sort and no amount of painkillers that they gave me would even remotely touch it. I lay and gripped the sides of the bed till my knuckles turned white and my toes were curling with the tears just streaming. This hospital with it’s archaic pain control system didn’t allow for a mild dose of morphine. The most they could offer me was Panadol and another pain relief injection called Tramal, which was slightly stronger. I was warned however that Tramal could cause nausea and vomiting. I was desperate and told the nurse to give me the injection anyway. Luckily it had no effect on me, but it also had very little effect on my pain. The intubation from surgery started to irritate my throat, and so the coughing started. I coughed and hacked morning and night, getting absolutely no sleep. I would doze off briefly through sheer exhaustion and then would cough myself awake again. The oxygen mask resting on my pillow and running constantly was my only solace. I was being served copious amounts of Arabic food that I had absolutely no interest in. All I felt like doing was swiping the tray across the room. I didn’t need food, I needed air. I would have to go through this same operation again the next day, with yet another tube coming out of my left ribs and I had no idea how on earth I was going to handle the pain.

This entry was posted on October 28, 2014.

Completely broken

Going home and having to tell the girls that I had to be admitted to hospital the next day was very emotional and traumatic. Their eyes widened as I delivered the news and the whole family engaged in a group hug, as we clung to each other and cried. This time I couldn’t be stoic about it…I couldn’t be strong for the girls. I was completely broken as I sobbed along with everybody else. I packed my bags and made it through the night, even though I had to sleep sitting up. Lying down wasn’t an option since I couldn’t breathe at all in a supine position. Needless to say, I didn’t sleep at all that night. I was waiting for something to happen. Before we switched the lights off that night, I spent an extra amount of time tucking the girls in. Sitting in my bed that night, I wrote each of the girls a special letter telling them how much I loved them and that if anything happened to me, that they should know that I would always be with them. That I would somehow find a way to always be by their side if I didn’t come home. These are letters that I ended up throwing away months later but at the time, I was hoping and praying with all my heart that they would never have to open them and read what was inside. Before switching off the lights, Jaco and I held on tightly to each other.

The next morning at 5:30 we left for the hospital. Luckily it was during school holidays so we didn’t have to worry about how to get the girls to school and back, but saying goodbye to them broke my heart in two. Hugging them and crying, I didn’t want to let them go. Walking away, I saw three little faces at the front door waving to me and crying. I remember my eldest Rochelle saying to me, ‘Mommy, please fight to come home…please, we need you!’

The girls

This photo was taken a few days before I was admitted into hospital.

Getting into the car, I buried my face in a tissue and wailed. The emotional pain was so acute that I could feel it physically. Crying also took up vital oxygen that I was by that time fighting for. Crying would force me to stop mid way to catch my breath, and then the pain was so intense that I would sacrifice the air and start crying again.

I was initially booked in at the hospital into a ward with 6 other beds in it. The TV was blaring on some Arabic channel and I could barely see the screen from my bed. There was a small pokey window next to my bed which looked out onto a very small cement courtyard filled with bird droppings. It was the most depressing, dismal sight. I drew the curtains around my bed and lay there sobbing. Instead of looking out at that utterly desolate sight outside the window, I closed my eyes and imagined my holidays down by the seaside to try and hold onto my sanity. A few hours later, two nurses drew my curtains back and coming up to my bed, they told me that there had been a mistake, and with that apologized and wheeled my bed into a private room where I had a TV that I could at least see. The channels were very limited and the picture was as grainy as a 1960″s antique, but I could at least listen to English. Something that I could grasp onto that at least made a smidgen of sense in the midst of all the incomprehensible insanity. My spirits started to lift as my mood improved somewhat.

As a little girl I always wished that I could see into the future. How awesome and insightful that would be. It’s a good thing in this case that I couldn’t. I had absolutely no idea what the next 7 days would hold for me…the hell that was to follow. I’m so glad I couldn’t see what was to come. The future is truly not ours to see.

 

This entry was posted on October 25, 2014.

System failure

In my breast cancer book that I have written, one of the things that I emphasize way beyond all doubt is the importance of having a doctor who will have the respect to take your requests and concerns seriously. Unfortunately as I have mentioned before here, I had no choice but to move to a government hospital after my medical aid funds ran out. What never seized to amaze me was how the doctor would sometimes be so busy typing up on his computer, that he couldn’t have been bothered to turn around and acknowledge our presence by making eye contact with us. Instead we would be talking to his turned back and would get cryptic sentences and murmurs from him at best.

It was June 2010 and I was nearing the end of my nine months of chemotherapy, I began to experience dizziness, breathlessness and weakness. I could say that in the doctors defense chemotherapy does produce similar symptoms, but in this case he doesn’t deserve the benefit of the doubt, because for consultation after consultation I had tried to voice my concerns about this. My symptoms were much more exaggerated than just plain side effects. The saying that goes, ‘You allow people to treat you the way they do…good or bad.’ was in a way the case here. It was time for us to take control of the situation.

When my last chemotherapy session arrived, I had to be wheeled into the hospital in a wheel chair. When we entered the doctors rooms, Jaco physically turned the doctors chair around and said to him, ‘You will send my wife today for a chest scan to see what the hell is going on.’

At last, looking at me and noticing the fact that I was in a wheel chair got the doctors attention and they at last sent me for a chest x-ray. Right after the x-ray, I went for my last chemotherapy session and was so looking forward to finally completing my treatment. My medical aid was about to renew my funds.  I would be able to return to the private hospital and to a doctor that I trusted. I was so relieved to be almost done with the hell hole that I was in. When my session had finished and we were making our way out of the hospital, we were stopped in the hallway by the doctor and his nurse. Jaco and I could immediately see that they had panic written all over their faces. They told me that I had to stay at the hospital and be admitted immediately. A cardiothoracic surgeon had already been summoned to come and consult with me. We were told that I had pleural effusion. When the doctor explained that it was fluid that had been building up in my chest cavity, it all fell into place and I now understood why I’d been feeling the way I had. The next question was why. The doctor explained that chemotherapy does sometimes have this effect on patients. The combination of that and the still active cancer in my body was the explanation that was offered. I wasn’t buying it. This had sheer neglect written all over it.

They wanted to admit me immediately but I refused. I wanted to go home and prepare first. I had to explain to the girls what was going to happen. They would go into sheer panic mode if their father came home on his own and told them that I had to be admitted on an emergency basis. I wasn’t going to do that to them, besides I had to pack my bags and prepare myself psychologically for this. I needed two major operations to drain the fluid before it was too late. The doctors could not believe my decision and implored with me to stay. Jaco remained stoic and respected my decision. He knows that once I make a decision about something, there’s no turning back…ever. The medical staff had explained to us that my pleural sack was under great pressure from all the fluid and that if it tore open, I would without a doubt drown in my own fluids. I had to take the risk of going home first. I was done with relinquishing control to incompetent doctors, and was now going to do things on my own terms…be it on my own head.

 

This entry was posted on October 22, 2014.

Some much needed time out.

I was grateful for the fact that throughout my relapse, it didn’t seem to have affected the girls too much. I think it had something to do with the fact that we went to great lengths to keep their routine as normal as possible, keeping them in school and allowing them to do after school activities and everything else just like they normally would. I was lucky enough by that time, to have formed a fantastic group of friends who really banded together and helped us out wherever possible whether it was fetching the girls from school or taking them home with them until we got back from the hospital.

Hospital visits took up an entire day with a long drive there and back. We would leave at about 7:00am and only return at about 7:00pm. In the midst of all the chaos, Karen arrived to lend moral support and help out wherever she could. Her visits were in part, my lifeline because throughout my treatments I kept on thinking what it would be like if my mum and dad were still alive and able to visit me. I no longer had them however, and I needed a sense that there was still family out there that cared enough to travel 8000km to come and see me. Karen knew this without me having to say a word, and so dropped what she was doing to fly out. The girls also looked forward to their Aunts visits with great excitement. This time it was in December over New Year. Karen had it all worked out. Recipes, the lot. After visiting the supermarket, she went about in the kitchen with military precision cooking countless meals for us and freezing them so that on the days when I was feeling really under the weather, Jaco could just pop it into the oven and presto…there was a cooked meal for everybody to enjoy. I was incredibly grateful for what she did, as there were indeed days when those frozen meals were a lifesaver and there were so many of them. They lasted for weeks!

Fun in the sun

At the water park together in the beginning…until we decided to split up and all hell broke loose!

It wasn’t all work and no play during that time. December in the UAE is a lovely time of year and very pleasant outdoors and so on a day when I was feeling up to it, we went and visited a water park in Dubai. I’m not one for steep, fast rides. They make me very uncomfortable and overall, it’s just complete sensory overload. There were plenty of those where we were. After a while my second youngest daughter Arlise and I, decided to band together and went on a double tube on all rides. That way the two of us could stick with all the rides that we were comfortable with, while the other thrill seekers could go off and do their own thing. Thing is, my husband took Arlise and I for a ride…in more ways than one. As we were standing in the queue for one ride, he came over to us and directed us to a different one, assuring us that it wasn’t too steep and that we would enjoy it. This was our first time there so we had no idea! Anyhow we got into our tube very excited to see what this was all about. When the lady in front of us was pushed off, I just remember her suddenly disappearing and screaming. Arlise looked back at me looking like a deer caught in headlights and asked, ‘Mommy why did she make such a performance?’

A red warning light went on in my head straight away as I realized that Jaco had just been up to his old tricks again…at our expense. Problem was it was too late for us to back out. When it was our turn to go and we were sent off, we immediately realized why the damsel before us had made such a fuss. The ride began with an almost sheer drop. For the first 5-10 meters the tube didn’t even touch the slide. My stomach immediately launched into my mouth, as a blood curdling scream involuntarily escaped my throat. Arlise’s scream was even louder than mine, so together we were making total spectacles of ourselves. Getting to the bottom of the steep slope, we were thrown into pitch darkness. Whether we were going up hill or down at that point still beats me to this day as disorientation reigned supreme, with arms and legs going in all directions. From there the ride was tossing us from side to side as it guided us around sharp bends that were whiplash worthy. By this time I was begging for the ride to end and was already planning in my head what I was going to do to Jaco as soon as I got off. I could sense that we were quite high up as the ride slowed down to a nice even keel and the sun shone on our faces. I breathed a huge sigh of relief, but not for long. To my horror and utter dismay we were then thrown into yet another sheer drop even longer than the first! The ride couldn’t end soon enough, and when it did and we emerged at the bottom, we were greeted by Jaco standing there with an irritatingly evil grin on his face. Wisely, he ran off as soon as I got out of the water. If I got my hands on him…!!!

This entry was posted on October 19, 2014.

A long and arduous journey

Having to phone your family and friends the first time around to tell them about your diagnosis is hard. Having to phone them again 5 years later just when everybody has let their guard down and relaxed, thinking that your breast cancer was at last a thing of the past is heart wrenching. The knowledge that they have been behind you every step of the way and really vouching for you makes it even more so. When I told Karen I heard an intake of breath and silence. The shock was palpable even 8000km away over a telephone line. True to form though, she soon adopted her nurturing take charge attitude and started to make arrangements to come out and support me. My parents in law were also making arrangements to come and visit, willing to help out wherever they could. One of the few things, besides my immediate family of course that was keeping me together, was the love and concern I was feeling  from other family members across the miles.

Happier times

Happier times.

Meanwhile back at the hospital the protocol of my treatment had taken a 360 degree turn. It didn’t resemble in any shape or form, the treatment that I’d been receiving at the private hospital and it was worrying me no end. Instead of having a steady flow of treatment once a week for three weeks, I was forced to opt for a heavy dose of chemo once every three weeks, because of the long distance we had to travel just to get there. This meant an increased chance of nausea as well as other worsening side effects. Each visit to the hospital was a waiting game…waiting to go in and see the doctor whilst being surrounded by masses of sick people sitting around also waiting their turn. To tell you that this was a depressing scenario would be the understatement of the century. I was in utter despair. With every single visit I would find myself asking exactly the same question, ‘How on earth did it all come to this?’

I was busy drowning in the system…I had forgotten who I was, where I came from and what I stood for. I wasn’t Sarah anymore, I was a stage 4 breast cancer patient fighting for her life. Luckily to my great relief, I was tolerating the treatments much better than I thought I would, but I was blowing up like a balloon from all the cortisone that they were assaulting me with. Copious amounts of it and to my dismay I would be fitting into a piece of clothing one day and then finding it was too small for me the next. My self image and self esteem plummeted to nothing. It was in a very deep, dark ditch somewhere and was impossible to retrieve. I would move about the hospital robotically…Jaco guiding me along down the hallways to wherever I had to go. This time around I was much sicker than before. I had dark rings under my eyes and they were sunken. I remained stoic as I was lead each time to the chemotherapy suites. They might as well have been taking me to the gallows. At that point to be perfectly honest, it wouldn’t have made any difference to me. In the end I chose to detach myself from the situation and became totally numb and emotionless. It was a matter of self preservation on every possible level and it was just my way of getting through the arduous and exhausting weeks and months that followed. This time around, I had refused to have another porto-cath inserted after the hideous scar that they had left me with the previous time, and so I endured a cannula being inserted at each treatment. It was a small price to pay after all, I had much bigger things to worry about.

This entry was posted on October 16, 2014.

Another blast from the past

During our holidays by the seaside each December, we didn’t spend the entire time trying to nick a tree…rather we spent our energy doing slightly more constructive things like playing games. I’m not talking about hide and seek. These were a little more sophisticated that children and adults alike had great fun participating in. They were conducted mostly at night when the pitch dark was an essential element. Friends from around the village soon heard about the fun we were having and flocked to come and join in. The more people that were involved the better and the more exciting it was as a result. My Aunty Sally and Uncle Clive being the fun loving people that they were, were responsible for bringing these games to our family and making them a tradition.  It’s one that my sister Karen and I still treasure and keep alive within our own families.

Swart Piet

After a game of Swart Piet. I am front center and was about 10 at the time. My Aunty Sally is to the left of me and my sister Karen stands behind me.

One of the games was called Smee, short for ‘it’s me’. This is similar to hide and seek with the difference being that it’s played only in the dark, and the person that is hiding has to be touched to be found. Once the person has found the hider, they have to sit in dead silence with him/her. The objective is to not let the rest of the people still searching know that you have found the hider and disappeared. Thing is, the others always quickly realized when there was someone missing and then the frantic search would accelerate ten fold. Eventually there would be 20 people piled up on a bed or in the fireplace with a lot of muffled giggling taking place. The last person to arrive would be the one that had to go and hide on their own in the pitch dark next. Many times this would inevitably be yours truly. I couldn’t have been older than 5 and was not a very good hider. I would choose simple places to hide like behind the door, which was obviously the first place people would look. On one particular occasion while I was hiding, my good old reliable bladder decided that it urgently needed emptying. At this point I could make excuses and tell you that it was probably down to all the excitement, which it probably was of course, but I know other family members don’t agree. This is another one that I’ve never been able to live down by the way, as I stood behind the door and wet my pants. I could’ve drifted casually undetected from my hiding place to my room and quickly got changed, but I wasn’t that good. Instead, when the lights were eventually switched on again, I became the laugh of the century, as my mum quickly shuffled me into my room so that I could put an end to my embarrassment. Not that anyone would leave it there!

Another game was Murders in the dark. This involved a card being dealt to everyone. If you got the queen of hearts you kept your mouth shut because that meant you were the murderer. If you got the jack of spades you were the detective and had to exit the room for the time being. That’s when all the lights were switched off again and everybody had to move about in the room in complete darkness. The murderer was in the room somewhere and could choose his/her moment to strike, by putting their hands around any persons neck. If you felt hands on your neck it was your cue to make as much of a performance as you wished, gracefully draping yourself over the back of the sofa if you so wished. That is when the detective would come in, switching on all the lights to interrogate everybody. The aim was for the detective to find out who did it. Ummm…it was here that I had yet another accident which in my defense was due to the fact that I got such an enormous fright from my mum screaming her head off in my ear. I didn’t climb onto the sofa, I flew onto it when this blood curdling scream that I didn’t recognize filled the darkness. I don’t need to tell you what happened next…use your imagination.

Swart Piet was a game that was played sitting around the dining room table. Everyone would receive a set of cards and the objective was to get a full set of the same type of card. Everyone passes a card face down, to the person next to them and so it goes on until someone achieves a full set and then, as inconspicuously as possible puts their cards down on the table. The last person to catch on and put their cards down would be the one that got a black mark on their face. This was done by taking a cork from a bottle and burning one end with a cigarette lighter, until it was black and soot filled which would then cool off and be plastered onto the losers face. We all had out turn in having to face the black cork. Those were the days!

 

This entry was posted on October 13, 2014.

My continuing treatment

It was October 2009 and close to my favorite time of the year… my eldest daughter Rochelle’s birthday in November and Christmas! Although I should’ve been relieved and looking forward to the festivities, I wasn’t particularly excited when my radiation finally came to an end, given the very long road that was still ahead of me. One good development that had taken place was the fact that the oncologist who had with great ineptitude announced my relapse, had left the hospital where I was based and had been replaced by, who turned out to be a much more competent doctor who had his finger very much on the pulse when it came to following the protocol that was right for the individual patients needs. After consulting with him once my radiation therapy was complete, he prescribed 6 more months of chemotherapy. In a way, knowing what lay ahead of me in terms of what to expect made it somewhat easier, but this is a double edged sword because at the same time you know how long and arduous it’s going to be…the fact that your hair is going to fall out, that you may experience nausea, that everything is going to taste like cardboard once again, that you’re going to feel weak and tired…that it’s going to take double the length of your chemotherapy to reclaim all of it again.

We had just moved house and there were still mountains of unopened boxes to be seen to, but I had much bigger things to worry about. My chemo started in early November and I was to go once a week for three weeks, with one weeks break in between. It was more gentle chemo and not so hard on my system, but this time I had a much harder battle to fight, because it wasn’t just adjuvant chemotherapy, but more of the hard core type. This was the reason for giving smaller amounts on a weekly basis with a week’s break in between so that I didn’t suffer from debilitating nausea and be at risk of septicemia ( a potentially deadly systemic infection brought on by low white blood cell counts). Every time I went for a session I would practice visualization, almost in the form of a Pac-man game. The Pac-man represented the chemotherapy and was the little mouth that was eating up all the cancer cells as it went along. By this time I had stopped praying to God…I wasn’t sure I could still rely on him. Instead I was praying to my late mum, begging her to help me through this.

Al Ain

Receiving chemotherapy after my relapse.

Then disaster struck in the form of my hopeless medical aid. I got a phone call from my oncologist telling me that the medical aid was refusing to approve my next chemo session for the simple fact that I had exhausted my funds. Instantly I knew that this meant I had no choice but to return to the government hospital that I was at before…the one that makes you feel like a file number and a statistic, not a person…the one where you felt like the member of a herd of cattle. After many tears as well as phoning the medical aid to grovel without any success, I had to scrape my heart off the floor. Knowing that if I was to survive this time round, I had no choice but to go back to the said government hospital to complete my treatments. Every cell and nerve ending in my body was screaming…telling me to run the other way, but I couldn’t. To my utter astonishment, disbelief and dismay I found myself sitting in the consulting rooms of the very same doctor that had treated me there the last time. My trust in this oncologist was hanging by a thread and not once did he turn around to face Jaco or I during that consultation. Not once did he make eye contact. He was too busy typing in details for the last patient he’d just seen, as well as to catch up with my unwanted presence in the room. On arriving at the chemotherapy suites after leaving his rooms and being plugged in for my next session, I sobbed. The attending nurses all approached me to ask me what was wrong, but I naturally couldn’t confide in them. They were all part of the same team. The only thing that kept me from falling to pieces completely was Jaco’s presence and the fact that I knew without a shadow of a doubt that he would see me through all of this.

This entry was posted on October 10, 2014.

Radiation therapy

All the mixed emotions that I’d been experiencing had left me totally drained and numb. I also had absolutely no idea how to tell my girls that my cancer had returned. They say that if you relapse again that it’s easier from the perspective that you at least know what to expect…well sort of.  I was being forced, kicking and screaming against my will to embark on this dark and perilous road again that is pock marked with pot holes that are actually much deeper and darker than they look on the surface. You know without a shadow of a doubt that if you fall into one of them, you’re going to have a great deal of trouble getting out again. I knew without anybody having to tell me that I was now up against a completely different ball game and that the stakes had never been higher. I could still not get my mind around the fact that this was actually happening to me. That this was my life. What on earth was it coming to?  I felt like God and the rest of the universe had turned against me the last time; this time I was picturing nasty, demonic looking effigies racing towards me with their pitchforks raised in the air ready to sink them into me. I could not believe that my life had come to this. I actually felt like asking someone to pinch me so that I could wake up from this inconceivable nightmare.

After getting home from the hospital that day, we never said anything to the girls. We first had so sleep on it all and process what had just gone down. The next day happened to be a weekend and we called a family meeting. As most of us know there is no easy way to break news like this to family members and you’re so tempted to use euphemism’s, but the only way is just to put it out there. Three totally dismayed little faces looked back at me. They looked like deer caught in headlights. Without a sound my second eldest, Arlise’s eyes filled with tears as they just started to stream down her cheeks. She stood up and came over to me, sat on my lap and buried her head in my shoulder as she started sobbing. All color had drained from the remaining two faces that looked at me, frozen to the spot. One could see that one and the same question was on the tip of their tongues, ‘What now?’

There was of course also the task of letting other family members know about it. Jaco phoned his parents to inform them, and after a very tearful conversation with my sister Karen, she yet again was going to book a flight out to come and see us over the New Year. That was at least one beacon of light, and something that I had to look forward to. Seeing my sister again!

I was told by my doctor that the first plan of action was to go for radiation. The best place to go at the time was a cancer center that was 250km away which was chosen for it’s state of the art equipment. There I would be placed under the care of a radiation oncologist who would take care of me through all the treatments. The only issue was all the driving. It would mean driving 500km every second day just to lie on a table for 10 minutes. Jaco was fairly new at a company that he’d just joined and for him to take every second day off so early on in the race for a month seemed like a tall order at the time. That was when an angel was sent to us in the form of a small and wealthy Chinese man, who offered up his chauffeur to drive me to and fro to my appointments. Jaco and I were both so grateful and relieved and so for the next three weeks, I was driven back and forth to the cancer center in the back of a limousine.

In the midst of all of this and much to my relief actually, my oncologist left the hospital that I was at. Although that in itself turned out in the end to be a blessing in disguise since I no longer trusted him, he was being replaced by a doctor I didn’t know. This meant that I had little choice but to learn to trust and put my life in the hands of a new doctor I knew nothing about.

About a week into the radiation, I started to find eating very difficult. Every tiny mouthful that I swallowed made my esophagus and stomach feel as though they were on fire. I had to resort to eating very soft foods in very small amounts at a time throughout the day and as the treatments progressed, it became worse. The only good thing that came out of it was the fact that I lost some weight. This was a very small consolation, given what was to come.

This entry was posted on October 8, 2014.

Unanswered questions

Before I knew it, it was time for me to go and collect the girls from school. I don’t remember doing it that day. I was just robotically going through the motions. When we got home, my eldest daughter Rochelle asked me what was wrong and enquired as to how I got the big blue and purple laceration on my forehead. I just told her that I bumped my head by accident, which she accepted on the surface, but I could see in her face that she sensed something else was wrong. When my husband arrived home later that day he found me sitting in the living room staring straight ahead. I only realized that he’d walked through the door when he sat down next to me and put his hand on my shoulder. All I needed to do was just look at him and he said, ‘You looked at the scans didn’t you?’

 

At that point I didn’t know how to feel…it was just this overwhelming state of complete shock. How could this be happening? The following day when we walked into the doctors room, I was the first one to speak . ‘How can this be…my tumor marker blood tests have been putting me in the clear this whole time!’

Rak photo

The girls and I shortly before my first relapse.

My husband and I were waiting for a response. I could see the doctors mind racing to come up with some sort of explanation. He was on the hot coals now and he had no idea what to do…and so the back peddling began.  ‘Well, this can happen in rare instances with primitive forms of breast cancer.’

Primitive!? What is that…I don’t know about anybody else out there, but I’ve never heard of primitive breast cancer. I never said this out loud but I was screaming it in my head. What a cop out! It was just his way of telling me that scientists have been so embroiled in finding better treatments and a cure for breast cancer, that they’re overlooking something vital…making tumor marker blood tests more sensitive. How many women have fallen through the net and died of breast cancer because this blood test and the entire system let them down? I went from one day thinking that I was completely healthy and fine, to fighting for my life the next. After taking a closer look at the scans my doctor confirmed that I had progressed to stage 4. The cancer had spread to the back of my skull but luckily hadn’t penetrated my brain, my spine, the back of my ribs, the top of my kidneys, my lungs, the sternum, the right pelvis and hip and my thigh bone. I obviously have no idea what protocol other doctors follow, but being in this truly unbelievable situation questions started flying through my head. I hadn’t been for a scan for 3 long years. Do other oncologists fail to send their patients for regular CT scans or was it just my doctor? Then I remembered that I hadn’t taken my Tamoxifen for the full 5 years like I was supposed to, cutting off at 3 years. I had consulted my oncologist about it however and he’d agreed that it was safe to stop it. If I had taken it for longer it clearly would’ve been putting off the inevitable and I was willing to take the risk. This risk clearly hadn’t paid off, but it still didn’t explain how the tumor marker blood test results had let me down so catastrophically, and then there was the absence of CT scans. If I had been sent for regular scans, I would clearly not have been in that situation!

People can so easily sit and preach that things in life happen for a reason, but when you feel like you’re in a fragile boat that’s perilously being thrown about in rough waters threatening to snap in half like a twig, then it’s very hard to believe. I was utterly consumed with paralyzing fear and anger that was almost too much to bear. I was angry at God for allowing this to happen to me, angry at my body for letting me down and determined that one way or another, I was going to get myself another doctor. I was no longer going to put my life in the hands of someone I could no longer trust. That was the least of my problems however…how on earth was I going to deliver this heartbreaking news to the girls?

This entry was posted on October 5, 2014.

My worst fears realised

After arriving home from our holiday I wasn’t due to see my oncologist for at least another 4 months, so I made an appointment with an orthopedist at a hospital closer to me. He sent me for an MRI on the areas where I was experiencing the most pain. An hour later the results were back. When the doctor mounted the images of my scan onto the light box, nothing really showed up. Upon looking at it a little more closely however, he pointed something out to me…a little shadow about half way up my spine that he couldn’t explain. I had informed him of my medical history and it was at that point that he asked me when I’d last been for a proper CT scan. I couldn’t remember…maybe three years prior? He suggested that I take this scan to my oncologist and investigate a little further. I remember him handling the situation so well being really reassuring at the same time, not wanting to alarm me by telling me that he was certain it wasn’t anything to worry too much about, but that given my history it was better to make sure. This doctor in a small town at Ras Al Khaimah Hospital saved my life. In a hospital that doesn’t yet have the technology to treat cancer patients, this doctor had the sense to perform a scan and using his great instincts, pushed me to take it further. Unfortunately I cannot remember what this doctors name was and he has since left, but to this day I am still eternally grateful to that physician.

With my heart just about beating out of my chest, I phoned my oncologist later that day and made an appointment to see him. A few days later upon looking at the scan he shook his head and said, ‘You need to go for a CT and bone scan right away.’

Another 4 agonizing days passed as I waited for the results of both. Although the hospital where my doctor was based was able to do the CT scan, they weren’t able to perform a bone scan as they didn’t have a nuclear medicine department. For that I had to go to a hospital in another region to have that done. In a very unorthodox and unethical gesture, this hospital asked me to come back to them 4 days later to collect my scans to take them to my doctor. They could’ve used their own transport or used the courier services to have the bone scan results delivered to my doctor after all, the hospitals in question weren’t even 20km’s apart, but they couldn’t have been bothered.

My husband and I sat in the car right after going in to collect the scans. We didn’t even have to say anything to one another as I neatly put the big brown envelope down on the floor of the car. I was not going to open it and torture myself with the results if they were bad. We drove home in utter silence…you could’ve heard a pin drop. The next day however I had the same envelope on my desk in front of me just itching to open it. The follow up appointment with my oncologist was only the next day, but this large brown envelope was torturing me. I had to know right there and then what the results were, I just couldn’t wait any longer. I lunged at it and tore it open. I didn’t even look at the images…the report would explain everything. Instinctively my eyes darted to the bottom of the page to where the summary would be. My blood turned to ice as I turned cold and broke into a sweat from head to foot. There at the bottom of the page it said, ‘Indicative of wide spread bone metastasis’.’

I don’t remember letting the page fall to the floor. Jaco found it hours later after scrounging around on the floor under my desk. I really wished that somebody was at home with me at the time to put their arms around me and tell me that everything was going to be okay, but there wasn’t. In a way it was probably a good thing because I walked around the house aimlessly, wailing like a small child. I didn’t recognize the sounds that were escaping my mouth. My cat Goemal was walking around me in frantic circles, in the sound knowledge that something was desperately wrong. I started to bang my forehead against the walls, against the door frames. I would pay a small price for that later in the form of cuts and bruises as well as a splitting headache, but in that moment any physical pain was better than the utter confusion, mind numbing shock, terror and uncertainty for the future that was actively consuming me right there and then.

This entry was posted on October 1, 2014.