The Woman In The Mirror
Hello everyone,
The word proud can be defined as a feeling of deep pleasure or satisfaction as a result of one’s own achievements. For some, we do not often dwell on our achievements enough and tend to shy away from them. For others, pride is what fuels them and encourages them to keep going, whether they succeed or not. When last did you feel proud of something you achieved or almost achieved, knowing the sacrifices and effort that you put in?
Many months ago, I would look in the mirror and see a person that was becoming unrecognisable to me. That person looked incredibly tired. Withdrawn. Defeated. The physical and mental toll of my diagnosis was evident, and it was unfolding in front of my eyes.
Today I look in the mirror and I see a different version of that same person, one that is more recognisable. Whilst that woman looking back at me still looks tired, she is strong. She is confident. She is fiercely determined. She is proud.
Proud of who she is
Proud of her resilience
Proud of her bravery
Proud of the fact that she refuses to give up, despite setbacks and disappointments
Many months ago, I would look in the mirror and see a person that was becoming unrecognisable to me. That person looked incredibly tired. Withdrawn. Defeated. The physical and mental toll of my diagnosis was evident, and it was unfolding in front of my eyes.
Today I look in the mirror and I see a different version of that same person, one that is more recognisable. Whilst that woman looking back at me still looks tired, she is strong. She is confident. She is fiercely determined. She is proud.
Proud of who she is
Proud of her resilience
Proud of her bravery
Proud of the fact that she refuses to give up, despite setbacks and disappointments
That woman is me.
Rewind 10 weeks. I was due for my 3-weekly consult on Tuesday 10th Sept. The Saturday before, we met with friends for a lovely breakfast, which meant a late afternoon lunch for me as what is a great breakfast with good company if you don’t overindulge somewhat. Not long after lunch I developed a terrible discomfort in my upper diaphragm, coupled with nausea and just an overall unwell feeling. I needed to lay down as felt overwhelmingly tired and my skin was sensitive to touch. This was not a position that was unfamiliar to me, I dealt with this for weeks, so I was somewhat used to it, but definitely one which knocked the wind right out of my sails as it was (1), not making sense to me at all in that moment and (2) was creating an uncertainty as to whether I was headed for a setback. I contemplated sending a message to the oncology emergency number but knew I was seeing my wonderful oncologist in a few days so pulled myself toward myself and soldiered on. I took it easy for the rest of the afternoon and evening, with a few (too many) bathroom trips to get sick, managed a very light snack for dinner and opted for an earlier night than usual. I could not get comfortable regardless of how I tried to lie, again, nothing I hadn’t struggled with before, took some pain killers and got the little sleep I could.
Skipping a meal is not an option for me, even when I do not feel like eating. With my medicine, I have to plan and time meals around when I am able to eat and because the protein level in my liver struggles to stabilise, a Provita or two is not sufficient for what my body needs.
I woke on the Sunday feeling better than I did when going to sleep. There was still a tenderness in my stomach, a bit like that which you experience with a gastric bug. I took it easy again, contemplating all the possible reasons for this. I love Thai food, which is what I had for lunch the day before when the pain developed. A meal from a local retailer which I would often eat on the daily, so the ingredients were known to me. It was well within the expiry date and tasted as good as it always did, so as much as food poisoning seemed an option, I was not convinced.
In the early hours of Monday morning, I was woken with the most severe pain in my sternum bone area. This was feeling like dejavu. I rummaged around in the dark to find a Gaviscon sachet, which provided relief in record time and at that point, a sense of relief washed over me. Previously when I took antacids, there was no relief at all. With my appointment scheduled for the following today, it meant bloods needed to be taken and I headed off at first light to Pathcare.
My Tuesday appointment was a late one, so my blood results were available for me to view a few hours ahead of my consult. I have become a real stalker where my results are concerned. I wait for the hour, minute and second that they show they will be available and no matter what I am doing, I log onto my patient portal immediately to see the results. It feels a bit like waiting to be given access to the waiting room when you’re trying to get tickets online for what you know will be a sellout event, which over the years, I have become rather good at. My oncologist always mentions how refreshing it is that I take such a keen interest in my health. Wait, hang on, you’re telling me that there are people battling this dreaded disease that have no interest. Apparently yes. I am still dumbstruck by that.
As mentioned before, usually there are nine blood readings which get tracked, five of which relate to my liver and the ones which I benchmark my progress against. I logged into my profile and my eyes were immediately drawn to a lot of red values, some bolded and some with the asterisk or hash symbol. My medical qualifications may match those of a TikTok doctor, but having been at this for quite some time, I know what those shades and symbols mean. I felt dejected and needed to understand it. To put this into perspective for you:
S-Alt Phosphatase (which is the reading that disqualified me from the clinical trial) is always in a red bolded block. It has been tracking well week on week and had dropped over the months from 513 to 210, with a reading between 42 & 98 considered normal. This had now increased to 226.
S-Gamma GT was also tracking well and moving closer to the normal reading of <34. Over the weeks, this had dropped from a starting reading above 200 to 56 and had now spiked to 99.
S-ALT has always been stable and at a good level, with the normal level expected to be <36. I had reached a level of 22 so I am sure you can imagine that my soul felt crushed when this came back as 205. The font had changed from black in a white block to bolded text in a red block marked with #*H which means extremely high.
S-AST started 7 months ago in the high zone with a reading of 61 against a targeted normal level of <36. I had reached 32. Another massive improvement which spiked to 178. I was feeling all kinds of emotion at this stage and there was more to come.
S-Amylase is only measured every alternate time blood is taken. This started at 274 and has fluctuated quite a bit over the months with only one reading within the required range between 25 & 125. Having already seen that things were not looking good overall; I was not surprised to see that this had spiked from 220 to 372.
As expected, my protein level had dipped as well. For the first time ever, I was wanting to get to my appointment with haste.
Given the fact that I am a self-certified pathologist, radiographer and oncologist, almost as soon as greeting Dr Langenhoven and getting the small talk out of the time, it was time to quiz the qualified oncologist for answers. She herself could not pinpoint a reason for the backward tracking. The iron IV was considered a potential contributor in that it may have been administered too prematurely. Yes, that same IV that was to make me feel 20 years old again. I think it is still to take effect as I have felt anything but my age since having it. The oncologist was “not too concerned” however I was asked to redo bloods the following week, which were done. Whilst the readings had all come down, they were still higher than what they had been before this unexplained occurrence. My next consult was again booked for 3 weeks, and all bloods came back within an acceptable level. The boss in me was coming out again. I had this illness by the horns.
There is this institution called a medical aid, which is one of those must haves in life, but they can really test my patience at every opportunity they get. I sometimes think they forget that I pay them a hefty premium every month and that my life is dependent on mediation and scans to ensure my treatment plan does not need to be adjusted in any way. My previous scan was at their request to approve the next 3 rounds of my 6-month initial treatment plan. The authorisation was given post my scan for the next 3 rounds of medicine to see me through until the end of December. When the request for medication was submitted however, it was declined. That’s correct, they failed to mention that it was approved, then declined as my limit was exhausted with it being a pro rata benefit amount with me only upgrading my plan mid-year. You cannot make this stuff up. So, I am going to get hand me down meds from other BRaf patients who have completed this form of treatment but like me, had stockpiled meds. My next 9-week PET scan was then due. I was going to be travelling for a business trip so the scheduling of my scan and results needed to be timed perfectly. I saw the request for the scan come through on the Monday. I requested that this be done the following week Monday so that I could get my results on Tuesday before jumping on the plane on Wednesday.
Padel has become the latest sport craze in South Africa. I am sure like me everywhere you look, there is a court, and my social media feed is always ablaze with people raving about the sport, which I have played only once before. I found myself in my second match, this time with the medical aid and they were leading. Three days had passed since the authorisation request had been submitted and the outcome was pending with the medical review council. I had made multiple calls. The competitive streak in me knew it needed to level up and I started hitting some hard shots. Each time they tried to win a game, I broke back. It was me against them. Finally on Thursday evening just after 18h00, it was game, set and match. I received confirmation that the relevant approval had been granted and I was called early on Friday morning to secure my Monday appointment.
A PET scan requires that you fast five hours before, so the day started early with my last meal at 06h30. It was also the day before my consult, so bloods needed to be done. Only whilst sitting at Pathcare did it dawn on me that my arms were in for some serious abuse in a short space of time with e v e r y o n e battling to find veins and it was bloods and a drip within hours of each other on the same day. Next up was my scan. I knew and understood the assignment so was appropriately dressed this time around. I had gone from beginner to expert level after just one scan, so I was sure not to wear any clothing or underwear with metal or resemblance of metal. The sister that helped to administer the drip was very confident with her ability to get this right first time and it appeared she had secured the drip well enough for the isotope infusion, which is administered by the radiographer, who entered the room very soon after …….”I am not sure this drip is actually in properly. Does your arm feel warm at all?”. Well no, my arm did not feel warm at all, so she needed to give the drip needle a bit of a jiggle to kickstart the isotope. After a short time, chilling in the recliner in the lounge, it was time to get strapped in and sent into the tunnel for 25 minutes' worth of imagery.
Tuesday arrived. My consult was only at 16h30, which on this given day translated to 17h00 or just after. There was a new patient consult ahead of mine causing the delay and truth be told, it was okay. I have been there. There are lots of questions to ask in that first consult. It is a tough place to be mentally, so it takes a while to process everything you need to be told. As always, the team at Pacso treat everyone with importance so I was served tea whilst we waited.
The last time I got my scan results I was disappointed, partially because I had an (ridiculous) expectation that was not met, but mostly because it was alarming to see the extent of the melanoma. Dr Langenhoven looked pleased to see me, as she always is. We started with my bloods; they looked great even by my standards. Of course, I knew this already as I had stalked my profile from the time the results were made available. Then we moved onto the scan. I am still very much a beginner with understanding what I am seeing on the screen. According to the expert, things are looking good. My brain, kidneys, heart are still clear, and there are no more nodules detected in my bones. The brightness of the melanoma in the other impacted organs is less pronounced than it was on the previous scan. Apparently in August when my last scan was done, there was fluid outside my lungs which is not where it should be, however this was no longer an issue when comparing the two scans alongside each other. I could see very little difference and the written report mentions “unchanged in intensity, size and extent” next to nearly every scanned area. I thus have some questions to ask at my next consult. My consults have moved to a monthly schedule and no longer every 3 weeks, having started on a weekly schedule. I consider that as a big step with regards to my progress, along with my improving blood results as things are definitely moving in the right direction.
On the opening morning of my leadership conference, we had a renowned ex sports commentator as our guest speaker. His content referenced marathon running a lot and whilst the most running I do is my bath, so much of what he said resonated with me. I ashamedly admit that I have never read the late Nelson Madiba’s autobiography The Long Walk To Freedom, so had never heard the profound answer to a question when asked how he kept motivated whilst being incarcerated for 27 years. “Part of being optimistic is keeping one's head pointed towards the sun, one's feet moving forward”. There have been many times that I have felt incarcerated the past 7 months, but I have always tried keeping my head pointed towards the sun and my feet moving forward. From what I can understand from the oncologist, my immunotherapy will start within the next couple of months, and I too will be starting my long walk to freedom.
Rewind 10 weeks. I was due for my 3-weekly consult on Tuesday 10th Sept. The Saturday before, we met with friends for a lovely breakfast, which meant a late afternoon lunch for me as what is a great breakfast with good company if you don’t overindulge somewhat. Not long after lunch I developed a terrible discomfort in my upper diaphragm, coupled with nausea and just an overall unwell feeling. I needed to lay down as felt overwhelmingly tired and my skin was sensitive to touch. This was not a position that was unfamiliar to me, I dealt with this for weeks, so I was somewhat used to it, but definitely one which knocked the wind right out of my sails as it was (1), not making sense to me at all in that moment and (2) was creating an uncertainty as to whether I was headed for a setback. I contemplated sending a message to the oncology emergency number but knew I was seeing my wonderful oncologist in a few days so pulled myself toward myself and soldiered on. I took it easy for the rest of the afternoon and evening, with a few (too many) bathroom trips to get sick, managed a very light snack for dinner and opted for an earlier night than usual. I could not get comfortable regardless of how I tried to lie, again, nothing I hadn’t struggled with before, took some pain killers and got the little sleep I could.
Skipping a meal is not an option for me, even when I do not feel like eating. With my medicine, I have to plan and time meals around when I am able to eat and because the protein level in my liver struggles to stabilise, a Provita or two is not sufficient for what my body needs.
I woke on the Sunday feeling better than I did when going to sleep. There was still a tenderness in my stomach, a bit like that which you experience with a gastric bug. I took it easy again, contemplating all the possible reasons for this. I love Thai food, which is what I had for lunch the day before when the pain developed. A meal from a local retailer which I would often eat on the daily, so the ingredients were known to me. It was well within the expiry date and tasted as good as it always did, so as much as food poisoning seemed an option, I was not convinced.
In the early hours of Monday morning, I was woken with the most severe pain in my sternum bone area. This was feeling like dejavu. I rummaged around in the dark to find a Gaviscon sachet, which provided relief in record time and at that point, a sense of relief washed over me. Previously when I took antacids, there was no relief at all. With my appointment scheduled for the following today, it meant bloods needed to be taken and I headed off at first light to Pathcare.
My Tuesday appointment was a late one, so my blood results were available for me to view a few hours ahead of my consult. I have become a real stalker where my results are concerned. I wait for the hour, minute and second that they show they will be available and no matter what I am doing, I log onto my patient portal immediately to see the results. It feels a bit like waiting to be given access to the waiting room when you’re trying to get tickets online for what you know will be a sellout event, which over the years, I have become rather good at. My oncologist always mentions how refreshing it is that I take such a keen interest in my health. Wait, hang on, you’re telling me that there are people battling this dreaded disease that have no interest. Apparently yes. I am still dumbstruck by that.
As mentioned before, usually there are nine blood readings which get tracked, five of which relate to my liver and the ones which I benchmark my progress against. I logged into my profile and my eyes were immediately drawn to a lot of red values, some bolded and some with the asterisk or hash symbol. My medical qualifications may match those of a TikTok doctor, but having been at this for quite some time, I know what those shades and symbols mean. I felt dejected and needed to understand it. To put this into perspective for you:
S-Alt Phosphatase (which is the reading that disqualified me from the clinical trial) is always in a red bolded block. It has been tracking well week on week and had dropped over the months from 513 to 210, with a reading between 42 & 98 considered normal. This had now increased to 226.
S-Gamma GT was also tracking well and moving closer to the normal reading of <34. Over the weeks, this had dropped from a starting reading above 200 to 56 and had now spiked to 99.
S-ALT has always been stable and at a good level, with the normal level expected to be <36. I had reached a level of 22 so I am sure you can imagine that my soul felt crushed when this came back as 205. The font had changed from black in a white block to bolded text in a red block marked with #*H which means extremely high.
S-AST started 7 months ago in the high zone with a reading of 61 against a targeted normal level of <36. I had reached 32. Another massive improvement which spiked to 178. I was feeling all kinds of emotion at this stage and there was more to come.
S-Amylase is only measured every alternate time blood is taken. This started at 274 and has fluctuated quite a bit over the months with only one reading within the required range between 25 & 125. Having already seen that things were not looking good overall; I was not surprised to see that this had spiked from 220 to 372.
As expected, my protein level had dipped as well. For the first time ever, I was wanting to get to my appointment with haste.
Given the fact that I am a self-certified pathologist, radiographer and oncologist, almost as soon as greeting Dr Langenhoven and getting the small talk out of the time, it was time to quiz the qualified oncologist for answers. She herself could not pinpoint a reason for the backward tracking. The iron IV was considered a potential contributor in that it may have been administered too prematurely. Yes, that same IV that was to make me feel 20 years old again. I think it is still to take effect as I have felt anything but my age since having it. The oncologist was “not too concerned” however I was asked to redo bloods the following week, which were done. Whilst the readings had all come down, they were still higher than what they had been before this unexplained occurrence. My next consult was again booked for 3 weeks, and all bloods came back within an acceptable level. The boss in me was coming out again. I had this illness by the horns.
There is this institution called a medical aid, which is one of those must haves in life, but they can really test my patience at every opportunity they get. I sometimes think they forget that I pay them a hefty premium every month and that my life is dependent on mediation and scans to ensure my treatment plan does not need to be adjusted in any way. My previous scan was at their request to approve the next 3 rounds of my 6-month initial treatment plan. The authorisation was given post my scan for the next 3 rounds of medicine to see me through until the end of December. When the request for medication was submitted however, it was declined. That’s correct, they failed to mention that it was approved, then declined as my limit was exhausted with it being a pro rata benefit amount with me only upgrading my plan mid-year. You cannot make this stuff up. So, I am going to get hand me down meds from other BRaf patients who have completed this form of treatment but like me, had stockpiled meds. My next 9-week PET scan was then due. I was going to be travelling for a business trip so the scheduling of my scan and results needed to be timed perfectly. I saw the request for the scan come through on the Monday. I requested that this be done the following week Monday so that I could get my results on Tuesday before jumping on the plane on Wednesday.
Padel has become the latest sport craze in South Africa. I am sure like me everywhere you look, there is a court, and my social media feed is always ablaze with people raving about the sport, which I have played only once before. I found myself in my second match, this time with the medical aid and they were leading. Three days had passed since the authorisation request had been submitted and the outcome was pending with the medical review council. I had made multiple calls. The competitive streak in me knew it needed to level up and I started hitting some hard shots. Each time they tried to win a game, I broke back. It was me against them. Finally on Thursday evening just after 18h00, it was game, set and match. I received confirmation that the relevant approval had been granted and I was called early on Friday morning to secure my Monday appointment.
A PET scan requires that you fast five hours before, so the day started early with my last meal at 06h30. It was also the day before my consult, so bloods needed to be done. Only whilst sitting at Pathcare did it dawn on me that my arms were in for some serious abuse in a short space of time with e v e r y o n e battling to find veins and it was bloods and a drip within hours of each other on the same day. Next up was my scan. I knew and understood the assignment so was appropriately dressed this time around. I had gone from beginner to expert level after just one scan, so I was sure not to wear any clothing or underwear with metal or resemblance of metal. The sister that helped to administer the drip was very confident with her ability to get this right first time and it appeared she had secured the drip well enough for the isotope infusion, which is administered by the radiographer, who entered the room very soon after …….”I am not sure this drip is actually in properly. Does your arm feel warm at all?”. Well no, my arm did not feel warm at all, so she needed to give the drip needle a bit of a jiggle to kickstart the isotope. After a short time, chilling in the recliner in the lounge, it was time to get strapped in and sent into the tunnel for 25 minutes' worth of imagery.
Tuesday arrived. My consult was only at 16h30, which on this given day translated to 17h00 or just after. There was a new patient consult ahead of mine causing the delay and truth be told, it was okay. I have been there. There are lots of questions to ask in that first consult. It is a tough place to be mentally, so it takes a while to process everything you need to be told. As always, the team at Pacso treat everyone with importance so I was served tea whilst we waited.
The last time I got my scan results I was disappointed, partially because I had an (ridiculous) expectation that was not met, but mostly because it was alarming to see the extent of the melanoma. Dr Langenhoven looked pleased to see me, as she always is. We started with my bloods; they looked great even by my standards. Of course, I knew this already as I had stalked my profile from the time the results were made available. Then we moved onto the scan. I am still very much a beginner with understanding what I am seeing on the screen. According to the expert, things are looking good. My brain, kidneys, heart are still clear, and there are no more nodules detected in my bones. The brightness of the melanoma in the other impacted organs is less pronounced than it was on the previous scan. Apparently in August when my last scan was done, there was fluid outside my lungs which is not where it should be, however this was no longer an issue when comparing the two scans alongside each other. I could see very little difference and the written report mentions “unchanged in intensity, size and extent” next to nearly every scanned area. I thus have some questions to ask at my next consult. My consults have moved to a monthly schedule and no longer every 3 weeks, having started on a weekly schedule. I consider that as a big step with regards to my progress, along with my improving blood results as things are definitely moving in the right direction.
On the opening morning of my leadership conference, we had a renowned ex sports commentator as our guest speaker. His content referenced marathon running a lot and whilst the most running I do is my bath, so much of what he said resonated with me. I ashamedly admit that I have never read the late Nelson Madiba’s autobiography The Long Walk To Freedom, so had never heard the profound answer to a question when asked how he kept motivated whilst being incarcerated for 27 years. “Part of being optimistic is keeping one's head pointed towards the sun, one's feet moving forward”. There have been many times that I have felt incarcerated the past 7 months, but I have always tried keeping my head pointed towards the sun and my feet moving forward. From what I can understand from the oncologist, my immunotherapy will start within the next couple of months, and I too will be starting my long walk to freedom.
I will also be on a new medical aid provider from January, only one of two within South Africa that pay for this form of treatment, albeit only a maximum of 75% on the plan that I have needed to take up. This is the maximum cover limit permitted. It will be relatively unknown territory. I know from the trial consults that this form of treatment comes with around nine pages of potential side effects. I suffered with terrible side effects for much longer than what is common with my current treatment and would hate to experience anything vaguely familiar to that when I switch over. I am also aware that not everyone responds to immunotherapy, which is the only curable treatment for my form of cancer. I will however continue to keep my head toward the sun. I mentioned in my very first blog about the gentleman that was applying for the clinical trial at the same time as me and was successful at being accepted. I was genuinely delighted for him, and we vowed to keep in touch, which we have done. I continue to appreciate everyone's thoughts and prayers that are sent my way and ask if you could keep him and his wife in your thoughts and prayers as well. Whilst my journey thus far has not been plain sailing, his journey has been rough and his road ahead is also long and very uncertain. He had to withdraw from the trial after just three infusions, being one of only a handful of people that do not respond to immunotherapy. A tumour was also detected on his brain which required attention and there is not yet any finality on a treatment plan for him. We keep each other motivated when we chat but I know he is struggling.
Tomorrow, I leave for my third business trip in as many weeks. It has been daunting. It has also been rewarding to reconnect with everyone, some people that I have not seen since before lockdown and some whom I have never met. When I used to travel frequently, I would consider my phone charger as the most important item to pack. How times have changed. I now have notes in multiple places to remind me not to forget to pack my meds. Those meds that are keeping me alive.
Much in life is simply a matter of perspective. When you change the way you look at things, the things you look at change. I look at my life and I live it with pride.
Until next time, take care.
💜Caroline X
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