Hello everyone,

One of my best friends joked & said I should write a book about my health journey.  I do not ever recall excelling at school with creative writing (or (m)any other subjects for that matter). however, over the past few weeks, people have encouraged me to start journaling, so I decided I would start a blog.  My blog is a way in which I can share my story with others, many of whom have so kindly been praying & thinking about my family & for that we are most appreciative.  It is also a way for me to look back a year or two from now & see just how far I have come.  If my story makes just one person feel encouraged or gives them reason to see the doctor that they have been putting off, then I consider that as having made an impact on someone.

I can with certainty tell you that on a daily basis you deal with someone that is going through a tough season, be it in their personal or professional lives or someone who is carrying the load for a family member or friend that is dealing with a challenge.  We have become good at wearing a poker face, to not show weakness & to just keep going.  It costs nothing to be show kindness, to ask someone how they are doing, to offer help, even if (like me), they rarely ask for help.  The overwhelming kindness that I have been showered with from colleagues, friends, family members & even people whom Grant interacts with, but I don't know, is more uplifting than you might think. I have had the most amazing contemporary dance to a song called Heal dedicated to me, being danced by a young 15-year-old dancer who has never met me, but her dance teacher heard my story & her dancers chose to do that for me. So, in the words of Ellen De Generes, be kind to one another.  

As a number of you know, I recently shared that I have been dealing with a health challenge. Unbeknown to me, this actually dates back to Aug 2020, when I needed to have a head lesion excised.  The surgeon that attended to the procedure was very conservative & excised as close to the margin of the lesion as possible, the sample which was then sent to Belgium, USA & UK for review.  In my mind, that was the end of it & the removal of the stitches was the last time I needed to see the surgeon.

Post the procedure, I came to learn that I had an outstanding account with the practice & was struggling with the medical aid to have it paid, so when I saw Dr Gildenhuys' room calling me mid-December 2020, I assumed it would be the accounts department chasing me for payment.  To my surprise, it was Dr Gildenhuys himself.  He had finally received the report relating to my sample & the recommendation was that a larger margin be excised. I recall him telling me that if I were family or a friend, he would suggest that we proceed as recommended, so early January 2021, I was back in surgery for round 2.  I am not quite sure where the new sample found its way to this time, however less than a week after the 2nd excision, he called me again to say there would be a 3rd excision required, which was done a few days later.  After almost half the one side of my head stitched up for what was a small lesion, we were pretty sure that everything had been removed.  The histology report was somewhat inconclusive in that it made mention of melanoma-like characteristics, but also more a deep penetrating naevus & that no further management was required.  

For those maybe reading this who do not know me that well, I consider myself having lived an active & healthy lifestyle for the most part of my life.  I was involved in a lot of sport during my school years & when I started working, gymed a fair amount. When Covid hit & we went into lockdown, I joined a fitness programme & continued to keep fit, meeting a wonderful group of likeminded people who I can call friends to this day & who have kept me motivated even whilst I have been unable to exercise the past few (too many) weeks.  I have always loved walking, it is for me a sense of therapy, ME time, where I get to blast music through my earphones & prepare mentally for the day ahead or unwind after a day behind a PC.  I made a concerted effort during lockdown to focus on my physical wellbeing, focusing on eating better & understanding food better & I was seeing good results & feeling great, so continued ever since.

I am a simple girl, what you see is what you get.  Brand labels are not a priority for me, I dress for comfort. Whilst I often think I am an up & coming F1 driver, I drive a modest car, one that gets me from A to B that is fuel efficient & big enough for my groceries & my dogs, not one built for speed & performance. I catalogue shop for groceries & household supplies where there are decent savings. I love spoiling other people, but rarely spoil myself.  I use a phone that has simple calling & WhatsApp capability & basic social apps. Water, tea, a morning coffee or fruit juice are my drinks of choice.  I have never consumed alcohol; I have never smoked.  Those are choices I made. 

Toward the end of January this year, I was feeling quite fatigued, which did not seem out of the ordinary, as 2023 was a gruelling year workwise for me & I was a few weeks away from taking my annual leave, so my body was understandably needing a break. I had also had what we suspect was Covid late December & then another head cold early February. I was still exercising 4 or 5 days a week, yet my body seemed to indicate that I was not maybe putting in the same amount of effort.  I was looking & feeling quite bloated & found that I was struggling to complete a 30 min class without needing to take a number of power rests.  It was as if the instructors had levelled up & my average heart rate was high, even though there was no cardio being done in the workout.  At this point, I had rallied with a lot of reasons in my head, not forgetting the fact that I am in my mid-forties, a lot of body changes & things I was experiencing, could be put down to perimenopause. As with anyone working in a corporate environment, I considered myself to be fairly stressed out too.

I spend my annual leave with my sister, who visits from the UK & usually we have a pretty busy schedule whilst she is here.  This year was a little different as she was battling bronchitis, which allowed us to have a lot of downtime & just relax at home.  I found it somewhat strange that despite the fact I was on leave & really getting a lot of rest, I was struggling to stay awake past 20h00 on any given eve.  I had started to develop this feeling of having food stuck in my throat along with nausea.  The lymph gland in the left side of my neck was also a little more prominent than the right side in that I no longer had a jaw line on the left side of my face.  This did not seem too concerning, given that I had myself been a little under the weather just a month prior. I cannot recall at what point, but I woke in the early hours one morning with what was heartburn or indigestion (something I do not suffer from) which did not let up at all & the discomfort spread into my upper back below my right shoulder blade. This lasted for 2 days. For a period of about 2 weeks, every morning & eve my sciatic nerve in my right leg was paining. I just did not feel right & scheduled myself an appointment to see my GP on 11th March.

GP visits were always very far & few between for me.  If I saw a doctor twice a year, that would be considered two visits too many.  I hardly ever used my medical aid.  The doctor himself was quite surprised to see me & said "there must be a very good reason for you to come all this way to see me".  After unpacking my list of issues, I was sent on my way with medication for the throat & nausea feeling, forms for blood works, mammogram & neck ultrasound. At this point, some considerations that came to mind were gall bladder (would make sense as gall bladers have plagued my family) or stomach ulcer or lymphoma due to my neck gland (although the doctor only admitted this to me on a follow up consult as he did not want to scare me). My blood works all showed normal, my mammogram was clear & the neck ultrasound merely showed an enlarged gland, with no explanation.  The protocol was that another ultrasound must be done after 8 weeks & if no change or signs of enlargement, a biopsy would need to be conducted.  When I chatted with the doc around my test results, I mentioned that the medication was having no impact at all & I was referred to a laparoscopic specialist.  The timing was all a bit off as it was nearing those two short weeks in March & getting an appointment was tricky.  

The 1st available appointment was 8th April. I met with Dr Cooper as scheduled, spoke through my symptoms, discussed previous ops, my head excision which seemed to peak his interest.  After a quick examination, he seemed somewhat concerned about my gland & before leaving his rooms, I was scheduled for a gastroscopy & fine needle aspiration of my neck on the 10th April.  He also requested a chest x-ray be done before I headed home. Due to the short notice for the procedure, I was last on his list for the day, so when I was returned to the ward, he was busy updating all his patients around me.  I was still very sleepy as the conscious sedation was wearing off, so I was not sure if when I heard him mention the words x-ray, spot & lungs if I had overheard him speaking to the patient next to me or if he was talking to me.  I do however recall him showing me the 6 images from my gastroscopy, which flushed that sedation right out of my body within seconds.  The gastroscopy showed inflammation in the stomach lining, which was expected due to the reflux.  It also showed 5 or 6 lesions in the stomach, between 3mm & 5mm, one which had an unusual pigmentation & biopsies were done on all of them.  A biopsy was done on my neck gland as well.  At this point, more questions surfaced around my head lesion.  Fortunately, I had the histology report on my phone for the doc to read, which he then requested to be emailed.  He mentioned the results would take a few days & he would probably get them on the Friday or Monday of the next week.  I scoffed my hospital toastie & left with my stomach images, as if they were some kind of accolade.

No one knows your body as well as you.  If something seems amiss, it probably is.  Do not talk yourself into thinking otherwise.  Do not allow other people to make you think you are being a hypochondriac. Get yourself checked, rather safe than dead.  

Thursday went by, Friday went by, the weekend came & went & by Monday I was starting to get a little anxious, so called & left a message to ask that he call me.  There was no call by the time I called it a night on Monday.  No news is good news though right.

Tuesdays are a beast of a day for me, every week.  I have back-to-back meetings from early morning, right through until 5pm.  I had just joined my 1st meeting for the day, it was 08h30 on Tuesday 16th April when I saw Dr Charl Cooper flash up on my phone.  I quickly posted a Teams message to excuse myself for 2 mins as had an urgent call to take.  

A call that I could never have prepared myself for.  

A call which turned my entire world on its axis. 

A call which lasted 3 mins & 55 secs & changed my life.  

No one ever asks you if you would like to come in to see them when there is good news to share, so the minute he said "I have the results of your biopsies.  Would you like to come in & see me or would you like to chat over the phone", I just knew that I was in for some disappointing news.  I asked if we could chat over the phone.  I grabbed a pen & started to scribble down on a torn piece of paper as he spoke.  My neck biopsy did not produce a result as there were insufficient cells in the sample.  My chest x-ray showed multiple nodules in my lungs, which would require further imaging.  It was me he had been talking to just a few days prior. The stomach biopsies confirmed malignant metastatic melanoma.  I sat quietly for a while, listening to the doctor.  At that point he said, "it is serious, however melanoma is one of the easier forms of cancer to treat in that it is less invasive & treated using immunotherapy".  Up until that that point & being totally ignorant, melanoma did not sound too bad.  After all, my head lesion was melanoma & there was nothing more to be done there other than a few excisions.  It was when I heard the word cancer, that the dynamic changed. There is something about the 'C' word that pings you a little differently. He explained that the oncologist rooms would reach out to me later the same day to schedule an appointment.  I thanked him, hung up & casually rejoined my meeting, as one would expect from me.  When my meeting ended, Grant was on a call himself, so I dialled into my next meeting.  Once that one wrapped up, earlier than expected, I took my scrap piece of paper outside to share my unfortunate news with Grant.  I then walked over to the granny flat to give my folks an update as well & stupidly, messaged my sister with my news, without considering how it would affect her, so far away from me & whilst at work. Tuesday then continued per normal, until later that day when the reality of what I had been told actually hit me & the first of a number of emotional breakdowns happened.  The oncologist rooms had also at this stage contacted me to give me an appointment for 25th April.  All I was thinking at that point was that the 25th was still nine days away.  This is surely a joke.

Melanoma is mostly known to be skin cancer. I quickly came to learn that this can spread internally as well.  It is considered to be the most aggressive form of cancer as well as the most expensive to treat & most medical aids (mine included) do not pay for immunotherapy. The same simple girl needing the Rolls Royce of required treatment.  Immunotherapy is the only cure for melanoma.  It is not treated with radiation or chemotherapy; hence it is much gentler on the body as it enhances your body's immune system to destroy the cancer cells & prevent the spread thereof.  It is a slow treatment, on average, one IV every 21 days for a period of approximately two years.  

I managed to get an earlier appointment to see Dr Langenhoven.  We met with her on 22nd April.  By this stage, I was starting to experience all new symptoms, was in a lot of pain & discomfort & knew I was on a downward mental spiral.  Not only had my life been flipped upside down, but that of Grant's, my family, his family & my close friends that I was comfortable to tell at that stage.  My sister weighed up options to return home on a permanent basis, my folks wanted to cancel a holiday with lifelong friends of theirs & Grant was the quietest I had ever seen in over 20 years.  

The oncologist explained pretty much what I have mentioned above regarding melanoma & advised us that there was currently a clinical trial underway that had two openings & I was considered to be an ideal candidate in that I am young (I will take it) & healthy.  She gave us a brief overview of the trial & mentioned that she had already discussed my case with the trial doctor who would be in contact in the next day or two for a consult.  If accepted for the trial, at a very minimum, you have to be treated with the same drugs that a normal oncologist would treat you, but with the option for them to administer more advanced drugs or treatment to see how well it works (or doesn't).  She also mentioned that the main exclusions from the trial would be an auto immune disease of if you are sick.  She said to me, "you are not sick, you have a problem that you need help with." We left her rooms feeling somewhat hopeful & my emotional outburst was of relief as we left the building.

I was contacted by the Cape Town Oncology Trials & given an appointment for 29th April, another entire week later.  Every day that passed felt like a month.  I had been feeling unwell since the end of February & every day my body was presenting me with new pains & discomfort.  My stomach was swollen, I was still struggling with nausea, needing to sleep & work with a bucket within reach.  I could not manage to eat 3 meals a day as I felt overly full all the time.  I was heavily sleep deprived & I was not in a good head space at all.  

We met with Dr Coetzee, the trial doctor as arranged.  Myself & another suitable patient were at the consult together, where she went through the 41-page document explaining every aspect of the trail, from where your blood gets stored to the symptoms you could get (that was about 7 pages alone) to the database etc.  We were told to go home, read through everything again & if we were still interested to be considered, to let one of her team know.  I was very quiet throughout the consult, asking just a couple of questions.  Grant then asked how we know what stage I was, to which we were advised "you would not be sitting here if it was not stage 4".  I do not think I breathed or blinked or swallowed for about 5 minutes.  I was numb. My world was plunged into total darkness & my mind was sent into overdrive. Metastatic means that cancer has spread to more than one part of the body & anytime that there is more than one area needing treated, it is considered stage 4. For context, even if I had just one nodule in my lung & one in my stomach, that would still be stage 4.

She asked me to stay behind after the consult & mentioned that she could see I was taking strain & that I needed to pull myself together as my body needs to be in an optimal state for any form of treatment & suggested I consult my GP for some form of medication to assist me with coping. I do not think I said a single word in the car going home.  I was at a total loss of words.  It was at this stage that the reality of what I was dealing with hit me & I experienced some rapid physical & mental deterioration.  I was not able to drive, I could not play with my dogs, I could not cook, I was only able to give between 1 - 3 hours a day at work, if at all.  Simple things like bathing or dressing consumed all my energy & I was sleeping on & off from as early as 4pm every day.  I felt completely useless. I was totally dependent on my folks to do my shopping, help with cooking & Grant was doing everything around the house. It was as if my independence had been stripped from me, something which my folks had given me from an early age. I felt like I was being punished for a crime I did not commit & was becoming a prisoner in my own home.  Grant would take me out for breakfast on a Saturday, just to get me out.  I started to feel as if I was failing everyone around me.

A few years ago, my best friend's son wanted me to join him on what was one of his favourite rollercoasters.  I didn't want to come across as his mom's uncool friend, so I decided I would give it a go.  To his delight, we got the seats that faced in the opposite direction to which the rollercoaster runs on the tracks, thus I had no idea what lay ahead.  Having queued for some time, I had managed to assess the stability of the structure & there was no reason for me to worry that there would be any mechanical malfunction. The safety bars were sturdy & we were properly strapped in. If I can recall, it was also a superhero themed rollercoaster, so I just knew it was going to be fine.  That was the last time I visited a theme park, but it was not the last time I found myself on a rollercoaster.  This time, the rollercoaster was the situation I found myself in, still facing backwards & unsure of what lay ahead of me, & this time I did not feel strapped in & there were signs of potential malfunction surfacing.  

After chatting with the family & friends, the clinical trial sounded like a great option to consider & I called first thing in the morning to confirm that I would like to be considered & start the pre-screening.  As luck would have it, the gentleman with whom I needed to confirm was off sick & the following day was Workers Day.  We managed to touch base on Thursday & he endeavoured to contact me on Friday again.  True to his word, he reached out on Friday & an appointment for the 10th May was scheduled.  You guessed it, again another week.  By now I was wondering if I was the only person who seemed to have any sense of urgency with regards to getting some form of treatment going.  My kitchen counter was starting to resemble an illicit drug den as I was at a point where I felt reliant on anti-depressants, anxiety meds, sleeping tablets & nausea tablets to get me through each day.  I had also reached a point where I was throwing up on the odd occasion & struggling with permanent diarrhoea.  

This could be contentious depending on the capacity in which you are reading this, but I consider myself to have a relatively laid-back persona from a personal perspective, pretty happy to just go with the flow.  My work persona is firm but fair yet authoritive.  Irrespective of which persona I have, do not test me or push me that one step too far.  

We arrived for our 10th May consult, however due to an emergency consult required by another patient, the doctor was running far behind schedule & I felt properly tested.  I was stressed, I was borderline starving as knew I was having bloods drawn so wasn't sure if I needed to fast, but had anyway & my anxiety was off the charts. I was not shy to let them know, so was taken through to start some of the required pre-screening, which at this stage was only 7 viles of blood & vitals.  I then saw the doctor, signed all the required paperwork for the trial, had an examination of my neck and abdominal region & headed home.  My CT scan & MRI were confirmed for Monday 13th May.  Things appeared to be progressing & for just a moment, I thought I had seen a small light flickering at the end of the tunnel.

Never underestimate the value of the relationships you form with colleagues. Despite differences of opinions or the occasional fallout, they so often become friends you never knew you needed & in a time of need, I had to call in a favour from such a friend.  Without any hesitation, she was at my beck and call & kindly took me to hospital & back for my scans.  I am not sure how many of you have needed to have a CT scan before, however I was required to drink 1 litre of water followed immediately thereafter by 350 ml of this white drink.  Let's just pretend it was vanilla yogi sip. All of this was to be in the space of 90 minutes.  I had also reached the point where I carried an empty ice cream tub with me everywhere I went as I was never sure when I may need to get sick.  This was one of those days & I found myself headfirst over my ice cream tub in her car in the parking lot.  I was mortified.  Here this incredible human had given up her afternoon to help me & I just couldn't keep it together.  I was worried my scans would be null & void as 330 ml of my 350 ml yogi sip drink was no longer where it needed to be & it seemed as if I had been benched for one of the most important matches of my life.  After pulling myself together, I entered the hospital & the scans went ahead as planned.  I am still trying to understand what the point is of needing to drink yogi sip ahead of time is then all about.

During the course of the coming week, things were quiet on the medical front.  There were only a few tests still to be done. It was as if we had hit a dead end & there was not much in the way of communication.  The waiting game was almost as excruciating as the pain in the right side of body.  I struggled to push myself up from a laying down position.  My side hurt when I breathed deeply, if I needed to yawn or sneeze, I found myself holding onto my side to dub the pain.  My back was feeling bruised from laying down so much and I needed anti-inflammatory cream to be lathered on my back every eve.  Despite all of this, I was trying to stay positive, looking myself in the mirror every morning & telling myself out loud, "you are strong, you are brave, you have got this". 

I woke late in the afternoon of Friday17th & had both an SMS & a Whatsapp from the doctor's office:  Hi Caroline, XXXX here from Cape Town Oncology Trials.  Hope all is well.  Would it be possible for you to see us on Monday at 09h15 to do your ECG and bloods.  We are planning on giving you treatment on 22 May".  

Was I really reading this correctly?  In 5 days' time, I would be starting my treatment.  I responded to both messages, hoping it was not too late for me to confirm for Monday, so when I got a response to say they would see me on Monday, I smiled for what was probably the first time in over a month.  I was elated, there were tears of joy.  I called Grant from outside to proclaim, I MADE THE TRIAL.  I was straight away on the phone to my folks, who had me on speaker phone whilst sitting with their friends enjoying their last day of holiday.  Everyone cheered.  I let my sister & a few close friends know, whilst Grant shared the news with his family.  It was a good ending to what had been another gruelling week.  For the first time in a long time, I felt a sense of genuine hope.

Monday I was awake from stupid 'o clock.  We arrived early for my appointment & happened to bump into the gentleman who was also identified for the trial.  He had just finished with his ECG & bloods.  I asked if he was scheduled for his 1st treatment on Wednesday, in the hope that we would maybe be there together to kickstart our journey & he mentioned that he was scheduled for Thursday but that they had mentioned that in & out exclusions needed to still be done.  Our confusion was in sync as he was also certain that this was a done deal.  We swopped numbers to keep in touch & said cheerio. I felt somewhat apprehensive as we entered the building as I was now so unsure what was going on trial wise.  My ECG was done first, all readings were excellent, tick.  I had a lot of questions regarding the next steps & was advised that all tests up until that point seemed normal, however my tissue block was outstanding.  I would be contacted later that day with regards to Wednesday.  I then had my bloods done & we were able to go home.  Monday was a long day.  I kept checking my phone for a message or missed call, nothing.  Kept restarting my phone in case there was a connection issue, nothing. The hours were ticking by & by the time I was ready to call it a night, I had heard nothing.  I was left feeling empty.

On Tuesday I sent a message asking for an update.  My tissue block results were back. One of my blood results had just been received & now the doctor would sit with all my results & scans to make sure nothing was missed or overlooked & they would contact me before the end of the day. To be eligible for the trial, you need to have a nodule of at least 1cm or a lymph gland with a height of at least 1.5cm.  A lot was riding on this neck gland as at that point, the nodules that we knew of were not large enough. 

It was just before 14h00.  I was in a meeting & my phone rang.  Without even answering, I knew this was a bad news call.  All communication around my treatment had been via WhatsApp, so the mere fact that I was being contacted telephonically meant it was the doctor needing to chat with me.  I posted on my meeting chat asking to be excused for a few minutes.  I had been down this road on the 16th April already.  It felt like someone had pushed rewind.  I answered the call, holding onto the last bit of hope in me, praying that just maybe there was some good news.  It was Dr Coetzee herself.  One day before treatment was planned to start, she had to break the news to me that I had to be excluded from the trial.  I could hear in her voice that it was a difficult call for her to make. My liver count was more than what is allowed for the trial & she asked if I was home & if I would be able to come & see her, so she could take me through my scans in order for me to understand the extent of what we are dealing with.  I excused myself from my meeting, put on more respectable clothes & waited for Grant to race home to fetch me.   

Dr Coetzee was waiting for us when we arrived.  Through her friendly welcome, I could see she was genuinely gutted for me.  The liver count required for the trial (& what would be considered normal) must be between 40 & 98.  Mine was 513. My friend quickly pointed out that according to Google, I am in fact a raging alcoholic with a liver reading like that & we would need to speak about this secret drinking over the years. I was questioning if the results were in fact mine. There was however an explanation for that & as if I had not already received enough much bad news & disappointments, she proceeded to take me through my scans.  The MRI showed that my brain is clear.  My CT scan showed that I have a cluster of nodules in my neck gland, multiple nodules in my lungs (which we knew from the x-ray already) as well as multiple nodules in my stomach (also which we knew about).  The largest nodule in these organs was at the time of my scan, 9mm.  This is considered small.  My gall bladder, pancreas & kidneys showed no evidence of spread.  My spleen showed multiple nodules, with one large nodule of 2.7cm.  My liver showed three large nodules, one in the left lobe measuring 2.4cm & two in the right lobe measuring 4.3cm & 3.7 cm.  Your liver has no pain receptors, the membrane of the liver does & due to the swelling as a result of the nodules, my membrane was (& still is somewhat) stretched which was the cause of the severe pain in the right side of my body.  It is also largely the reason that I had been feeling nauseous since February as well as a contributing factor to my abdominal swelling.  It was at this stage that the doctor understood why I had been struggling with food up until that point.  

When a biopsy is done, the tissue that is used for examination is known as a tissue block.  My tissue block confirmed that I have something which is known as BRAF mutation, which basically means that my cancerous cells keep dividing.  60% of melanoma patients have this & 40% don't.  After going through all my scans, the doctor could probably sense that I felt defeated & depleted on every possible level, so when I heard her say "there is however a silver lining", I took a big sigh of relief. She had already contacted my original referring oncologist to let her know of my exclusion & I was referred back to private oncology.  She apologised for not being able to treat me, which was of course no fault of hers, wished me well for my journey, gave me a big hug & asked that I come by & visit to let them know how I am doing.  I was in pieces.

The next morning, I lay on the couch completely overwhelmed & uncertain as to what this meant for me.  I was overcome with emotion, the body pains continued & I was desperate for some sort of help.  Staying positive with so many setbacks is tough.  Even with the village of people keeping me in thought & prayer, most not even knowing what my diagnosis was, brought little comfort.  I had never experienced disappointment like this in my life.  On a daily basis, I did my best to continue with my positive affirmations in the mirror, but I was finding it harder & harder to tell myself that I was brave & strong & that I had this, as truth be told, I wasn't sure that I did.  I had kind of hit rock bottom & it was a horrible place to find myself.  But I kept putting on my big girl panties & soldiering on, trying to work & keep myself busy so as not to dwell on the situation. In desperation, I emailed Dr Langenhoven, knowing that Dr Coetzee had sent her all my scans & confirmation that I needed to be under her care due to exclusion, to ask if she could see me at her earliest convenience. Her offices called me on the Thursday to give me an appointment for the following day.  

We were now on the 24th May.  Over a month had passed since being diagnosed.  When we met with the oncologist, she explained her suggested treatment plan, which is the current treatment plan I am on.  Given that I have BRAF mutation, I require BRAF therapy for a number of months.  The exact number of months is not known as it is dependent on how responsive my body is.  BRAF therapy is not a curable treatment.  It is treatment that will assist to get my body to a point where immunotherapy can begin.  If immunotherapy is not administered, I will be back in the same position I am now in 9 - 18 months as the melanoma will come back.  The BRAF treatment breaks down and destroys the cancer cells but does not rid your body of them.  Also known as the Lazarus drug as it is the drug used for patients that are so ill, they cannot even walk & is considered to be a miracle drug, which is the silver lining that Dr Coetzee mentioned.  It is in a tablet format, easy on the body with very few side effects.  At that same consult, I showed her my ankle which was starting to look a little swollen.  She was well aware of my pain & issued me with cortisone & painkillers to assist with the swelling & said she wanted to see me weekly.  The necessary admin had been submitted to the medical aid for approval of my treatment.  There was again a small flicker of light.  All that was holding me up now was medical aid approval.

The weekend after that consult was a better one, we had a plan, I was going to get the help I needed. On Monday I contacted the medical aid, still no approval.  The oncology team were also following up & I was getting impatient.  We were so close, yet it still felt so far.  Grant & I then decided that we would fund the 1st month of treatment privately, as I could no longer wait & we all recognised the need for me to get started on medication as soon as I could.  The medicine order was placed & fingers were crossed that it would arrive in time for my weekly consult.  Having not had very much to be thankful for over all the weeks prior, an NGO that my oncology team are affiliated with, funded 25% of my 1st month of treatment.  The amazing team at PACSO, where I am now a patient, arranged all of it without me even being aware. I was blown away by this incredibly kind gesture.  To give you an idea, the BRAF therapy costs R 49,000 for a 28-day cycle of tablets.  Immunotherapy costs R 92k per IV treatment, every 21 days, so if you happen to see me waiting tables at your nearest Spur, please do not judge. Jokes aside, I have quickly learnt how important having correct policies in place are for eventualities like this. I might have still been sitting helpless had we not been able to pay a portion privately as the medical aid process and approval is lengthily and costly. Make sure you and your loved ones are adequately covered for situations you cannot forecast or control.

On Wednesday that same week it was voting day.  I contemplated if I wanted to risk being amongst so many people, considering that I have been living a very sheltered life of late, as I cannot afford to get sick.  Going anywhere out of the house made me incredibly anxious & I could be awake one minute & fast asleep the next.  Both my ankles by this stage were like tree stumps & we knew that queues would be long.  I did not feel my best, but I needed to show up & do what I could to make a difference for our country.  The voting station is a very short walk from the house, a walk that I used to do with ease, but the only way I was going to manage to make it there was by car, so we drove up, Grant dropped me off to secure a place in the queue whilst he went to find a parking.  The irony is that he managed to find parking almost in the road where we live, so we should have just walked.  Once he made it to the queue, I lay on the grass in the park under the shade of the trees until he made it to the front.  It was a 2 hour "excursion" which left me exhausted, but it felt like I had accomplished something & that mattered.

When I woke on the Friday, I had not yet received any confirmation if my treatment had arrived.  It was a bad day for me.  It was the 31st May but felt like Friday 13th. I did not feel well & I looked one of the fifty shades of grey.  I was only working half day, which has become the Friday norm due to my consults, but I was struggling to focus, I felt increasingly ill & I would probably say it was the worst day I have had. In an effort to feel better, I enquired as to whether my treatment had arrived & it had just been delivered & packaged for me, ready for collection later that day. I was filled with mixed emotions & although it was pleasing to know it was there, I was being dragged down by the way in which my body & mind was behaving.  We arrived for my consult, a clean ice cream tub in hand.  When we saw the oncologist, she seemed excited that my medication was there.  I let her know I was still concerned about my ankles as the swelling seemed to be worsening on both sides.  She took one look at them & sent me off to the hospital for an urgent leg ultrasound to check for a blood clot or DVT.  If either of these were present, treatment would not be able to start.  I had not prepared for any other setbacks, not on the second attempt to get the help I needed.  My 1st attempt was abruptly ended one day before treatment & now there was a chance that my 2nd attempt would be halted on the day on which my medicine was literally within reach.  I crumbled inside as we raced over to the hospital.  Surely there comes a time when you need to just catch a break & have something go your way.  I kept my eyes shut tight throughout the ultrasound. So many things were racing through my mind. I am sure my heartbeat could be heard out in the waiting room as it sounded deafening from where I was laying.  I heard the radiologist finish up with the equipment & I wasn't sure if I wanted to know the outcome.  He then in a gentle tone said, all done, everything is clear. I just lay there in disbelieve.  Finally, I was about to start on my journey to get better.

We returned with urgency to PACSO, where the oncologist showed us images of scans done on other patients (all Google images) where BRAF therapy was being administered so that we could get a sense of the success of the drug.  She did an examination of my abdomen as well, mostly to feel the liver & was quite stunned to feel just how swollen it was.  Your liver is supposed to sit just behind the base of your right rib cage, but mine felt the need to make a bold appearance & due to the swelling was almost into the middle of my diaphragm & down to my waist.  She looked me in the eye & said "this is a miracle drug.  I want you to enjoy taking it.  Within 10 - 14 days your body will start to feel normal again".  I was to start my meds that evening. She then gave the necessary permission for the on-site pharmacist to hand over my meds.  Thinking back, I am sure this was meant to be a happy occasion.  I was just not feeling it though.  At this point I had sent Grant downstairs to pick up the cortisone script, whilst I gathered all my bags & of course the infamous ice cream tub & headed to the car. I remember getting home & being so washed out that it took me a while to share the apparent good news with friends & family that I had received my meds & the next step of my journey was about to begin.  As instructed, I took the 1st set of meds before my dinner (if you could call it that).  The treatment consists of two sets of tablets, 4 of one which are taken in morning, along with 3 of the others & then 3 are repeated in the evening again.  

At this point I still had two burning rhetorical questions: 

Why me? Well why did that innocent bystander get knocked by a speeding car. It is a case of unfortunately being in the wrong place at the wrong time. No one expects it to happen.

Did I miss signs along the way that I should have acted on sooner? 

I had also reached a stage where I had accepted that I could not change the situation I was in, I could however control the manner in which I managed it. By this point I had stopped taking sleeping tablets, anxiety meds & painkillers.  I did not want to be reliant on "aids" to suppress my real emotions & ability to cope.  I was still taking the anti-depressants as the doctor had explained the role these were to play. I knew I needed to rise up.  I had a choice, either I was going to sink, or I was going to swim.  And I might have failed to mention, I was a very good swimmer in my younger years, so the fear of sinking was not up for debate.  I went to bed that eve with a lot to deliberate.  

I woke on Saturday morning feeling different. It was as if a switch had been turned on inside & the loadshedding that my world had been plunged into, had ended.  There is a song by Rachel Platten on my iPod (don't laugh, some of us do not know how to move music files to my Android device), called Fight Song, which you may be familiar with.  I have always liked this song as I have found the lyrics to be quite powerful & I could hear the chorus playing in my head.  It resonated with me more now than ever:

I might only have one match, but I can make an explosion

This is my fight song, take back my life song, prove I'm alright song

My power's turned on, starting right now, I'll be strong

I'll play my fight song and I don't really care if no one else believes

'Cause I've still got a lot of fight left in me

As we sat outside having a morning coffee, I made a decision right there & then that the only medication I was going to allow into my body was that which I needed to get better.  Grant & my folks seemed cautious that you cannot just stop taking anti-depressants, you need to ween off them.  I was not interested in hearing anything. I was remaining head strong & decided that it was time to fight back.  I was not going to allow myself to be defeated any longer.  I "enjoyed" taking my medicine that morning, went for a nice breakfast (although I still needed to send almost half the plate of food back as couldn't manage it all) & had a quiet day watching sport on TV, with a short midday nap. There was an energy within me that had not existed in a long time & I felt as if I had a purpose again.  The mere fact that I knew my journey had started lifted the entire weight of my mangled world off my shoulders.  

On Sunday I woke feeling good.  Was this my new reality?  I decided to take a solo trip to the local shops, which meant driving alone for the 1st time in a while & also being in a public place without anyone keeping a watchful eye on me.  It was daunting, but I did it & I was proud. After all, slow progress is better than no progress. I decided to make chicken wraps for dinner that eve, anticipating that I would only manage half of the wrap given the size of them & the manner in which I pile in the ingredients.  Before I knew it, I had eaten it all.  The savage in me was back & she had brought along her appetite.

Monday came around & again I had to pinch myself to make sure it was not all a dream.  Is this really happening, I felt great. I worked an entire 8-hour day without needing to lay down or take a time out.  I managed to have 3 meals (albeit smaller than what I would usually eat) & I was able to play with my dogs how I used to.  It was a milestone day for me. That day turned into 2 days, then 3 days.  It was then Friday & I knew my weekly consult was scheduled.  I woke feeling a little nauseous, which was totally stress related, as of late, e v e r y single time I had a doctor appointment, there was a curveball thrown at me.  I still managed to remain focused until we needed to leave.  This time it was just two of us.  My ice cream tub & I had partied ways, along with the bucket next to my bed.  I was energised & although a little nervous, in a very good head space.  My ankles were also back!  Before each consult, blood works are required which is done the day before.  I am never sure what the outcome of those will show, considering that the last set of bloods prior to these ones showed a very harrowing tale.  

Dr Langenhoven met me in reception with a very large smile on her face & a look of disbelief.  Who even was this patient she was consulting?  Where was the panel beaten patient from the week before? We spoke through how my week had been, she expressed how very well I was looking compared to the previous consult.  I shared with her how good I was feeling & the small wins that I had achieved.  She conducted the usual examination which indicated that my liver was almost back where it should be, now only 2 fingers below my rib cage, but significant shrinkage.  When I told her the switch had been flicked on in my mind, she looked at me & said "you knew you were dying if you did not get help. To come back from that with such a positive mindset is fantastic." I want to be a success story; I want to be able to help other people going through the same or similar journey & give them hope & motivation.  I shared this aspiration with her. "It is patients like you that make me love my job" was her reply.  Those words mattered; they were powerful & something I needed to hear.  I knew at that moment that I was in good hands.  

My body was telling me that it was ready to start moving again so I set a goal to take a casual walk around the block on Saturday, charged up the headphones & my fitness device in preparation thereof.  I was not going to let a small setback discourage my comeback.  On Saturday, I managed to take my walk.  I was cautious & mindful not to overdo it, so was back home within 20 minutes.  Another small win.  I then upped my game on Sunday & Monday when I took my walk and did 4 km both days.  

I am on day 12 of my treatment & it is refreshing when people ask how I am doing to say that I am feeling great.  The road ahead is long, it is very long. I know without a doubt that I am not walking it alone.  I have wonderful individuals in my life who are with me every step of the way. There will be a number of roadblocks, detours and potholes along the way. There will be dark days & days where I hit rock bottom.  That is normal, no healing process is linear.  It comes with a jagged line. Every single day I am reminded of what I am dealing with. I see the physical toll this has taken on me & those around me, my mailbox is a flood of medical aid emails relating to oncology.  It remains tough. Have I felt defeated - absolutely.  Have I wondered what I did or didn't do to deserve this - definitely.  Have I ever thought of giving up - I am not sure what giving up means, so absolutely not.

The fight does not end until the gloves come off.  I have only just put my gloves on.

Until next time, much love & thank you for your ongoing support.

💜 Caroline X