From Pole Position to Pitlane

Hello everyone,

No one said life would be easy. If they did, you were potentially being set up for failure.  Regardless of how challenging this thing called life is, there is always something to be grateful for each & every day.  The fact that you wake up to live another day should be gratitude in itself.  For those who have a job, whilst it might not be the job of your dreams, you should be grateful to be earning an income.  If you have a roof over your head & the ability to put food on the table, even if only a basic meal, these are all things you should be grateful for.  Some people do not have these "luxuries". No matter how bad you believe your personal situation is, there will always be someone in a worse off situation than you. 

When I last blogged, I had just seen my oncologist & was back to a weekly consult due to her needing to take some planned sick leave.  Whilst my overall bloods were showing positive results, my protein count had dropped somewhat & I knew a concerted effort was needed here.  I was unable to meet with her on Friday 12th as I myself was due to be away for a work trip & thus my appointment was scheduled for Monday 15th.

The week of 8th July didn’t start too badly. My ankle & foot swelling were still present & my wrists were clearly having FOMO, so they also began swelling. They were very inflamed & emanating quite a bit of heat. I battled to pour water from a full kettle or type comfortably on the keyboard. Opening my water bottle or trying to open the gas bottle was a near impossible task. My watch strap, which for the past few months has been so loose on my wrist, could barely fasten. It was apparent that my miracle drugs were still flexing their muscles & really trying to boss the situation. By Wednesday afternoon I was struggling. My fever was raging at 39.2 & my ankle & wrists were showing no signs of improvement. At that stage I realised that I might not be well enough to travel to JHB the following day & got the necessary permission to be dialled in for the Friday workshop.  I was worried about being at altitude with such swelling, especially when I could barely get my compression socks on & when I eventually managed, they felt to be strangulating my foot & leg more than anything else. I was also mindful of being on a plane when you so often pick up germs just by having a boarding pass & the fear of needing possible medical attention whilst away was also top of mind. I was still having multiple night sweats & would have been taking a rather large suitcase for an overnight stay to ensure that I had sufficient change of pyjamas with me.

Thursday was pretty much the same. I pulled myself together however to be as “present” as possible for Friday’s workshop. It was Grant’s birthday on Friday & with me initially due to be away, had planned nothing (also at his request), other than order cake to enjoy on my return. During the day he popped out & returned with a large parcel from Wellness Warehouse for me, filled with all things protein related. It felt like my birthday.  My colleague also kindly recommended a (very moreish) protein bar, which I promptly ordered a large quantity of. The house had gone from looking like an illicit drug den a few months prior to a well-stocked protein palace. It was time to get serious & get my protein count up.  

As soon as my workshop wrapped up on Friday, I needed to rest & warm up.  I was again running a fever & feeling completely washed out.  I lay on the lounge floor, with my bean bag & blanket, almost on top of the heater, trying to keep warmth through my body. Grant had kindly offered to do a braai for dinner & I had a list of items I needed to get from the shop. With my oncology appointment being on the Monday, I planned to visit Pathcare for my bloods after doing the shop run. Every 15 minutes that passed, I told myself I would leave in another 15 minutes. I kept dozing off & I was not dressed in a suitable top that could easily get pushed up over my elbow for my bloods to be drawn.  The thought of having to change into other clothes whilst being so cold was not exciting me much at all & I decided to postpone my Pathcare visit until Saturday.  The shopping eventually needed to be outsourced to Grant. In this house, you work hard for your slice of birthday cake.

We had reached Monday. I was not as upbeat about my appointment as I had been on previous occasions. I had been repeatedly logging onto my Pathcare portal to view my results but kept being told that my results would only be available at 11h06 on the 16th. Pathcare are very specific as to the exact time your results become available. The fact that they only showed that they would be available on Tuesday was a concern as I was seeing Dr Langenhoven later that day, so what would we talk about at my consult.  We arrived at Pacso, another very busy waiting room greeted us. Dr Langenhoven came to receive us from reception, her usual happy, casual self.  When she asked how I was, it was my turn to be blunt & I told her that her meds were still trying to kill me. 

She in fact had access to my blood results & was happy overall, although a number of readings showed no or a little increase which was expected given the inflammation & side effects. My ankles, knees & wrists were badly inflamed. I cannot explain the heat that my wrists were generating for the past few days leading up to this consult. They were causing me to have a fever & sending intense heat through my body. The decision was then taken that my medicine dosage would need to be reduced again, which I really did not want. I was told that it is not what I want, but what my body needs & that I need to remember that my initial dosage was the same as what someone who weighs 200kg would be given. I know I have not seen a number of you for a long time, but I can confidently report that I am not near that weight category. I was thus now to reduce my Meqsel from 1.5mg per day to 1.0mg per day & my Rafinlar from 2 x 100mg per day to 2 x 50mg per day.  I started off back in June on 2mg Meqsel and 2 x 150mg Rafinlar per day.  The oncologist also wrote me (another) script for cortisone for 7 days to help with the swelling, in an effort to give me some relief. We left promptly as I needed to get back to dial in for my afternoon meeting. Next appointment date was set for 6th August, unless in her absence I had an emergency & needed to see her stand in.

The cortisone took a few days to have an impact & after around 4 days, I had normal ankles again & my wrists felt less swollen as well. My night sweats had also stopped, which was the biggest relief ever. The discomfort in my upper arms & upper legs had gone, the lower limbs still somewhat sensitive, but manageable. I was hopeful that the reduced dosage, coupled with the cortisone had eliminated the side effects.  For just a moment I thought I was finally over the line & done with the side effects. They however were not done with me.  

Motorsport is one of those sports that I really enjoy watching.  It can be a cruel sport, much like this illness. Grid penalties get issued, often for situations beyond the control of the driver. A driver can go from pole position to starting from the pitlane.  That is currently me.  When I first started my treatment, I was in pole position for three consecutive weeks & suddenly I find myself at the back of the grid, struggling to get back into the points or back on pole. We are only halfway through the season, so there is plenty of time for me to fight my way back.

I was born & raised in Durban. Shoes were optional growing up, except during school. It is just too hot to wear shoes, so when I was growing up, I walked barefoot all over the place, on so many different surfaces.  Hot sand, barnacles, hot tar, gravel & stones.  It made the soles of my feet as tough as leather or so I thought. Whilst my previous side effects had eased up, I developed incredibly sore feet. The soles of my feet were (& still are) so sore to stand on, especially when I climb out of bed in the morning or walk barefoot through the house. I get a little bit of comfort when wearing my memory foam slippers, but the soreness is still there, just less intense.  My fingers have also developed a stiffness & the palms of my hands feel like I have lots of muscular tension & bruising. This is for certain, THE most bizarre experience of my life. It is Me vs the Side Effects.

The Cape Town winter has been brutal this year. Weeks of rain & very cold temperatures, so have not managed to exercise much at all, which is frustrating for me, as exercise has always been my happy drug, a way to manage & relieve stress, a lot which I am still dealing with. My only exercise of late has been walking, as I do not yet have the ability to do anything more strenuous than that. Given that my feet are so sore, I replaced my walking shoes to make sure that they were not contributing in any way to my sore feet. It has been proven that they were not the cause at all. The past week I managed 5 walks, each just short of 7km. I feel satisfied, although still frustrated as this does not feel adequate for me.

Today as I write this, it is day 36 since my side effects first started. I am not sure where the delta of 9 days comes in as I am well passed that period of time. It seems as if I like to overachieve in all aspects of this illness. Despite the reduction in medication dosage twice, I am back where I was. My ankles are again swollen, my knees are sore, my upper & lower arms & legs are so sensitive to touch, to bathe, to apply lotion. The night sweats have returned too, not forgetting the sore feet & stiff fingers. Apart from that, I feel great & that is said without sarcasm. 

I love the Olympic Games & the energy it carries. I am always in awe of the discipline & focus of the athletes as well as their resilience & the manner in which they manage disappointment when they miss out on a medal. This year I am in awe of Celine Dion, who closed out the opening ceremony. I am not sure how many of you have followed her health journey since 2022 or watched her documentary. She has an incredibly rare disease (stiff body syndrome) which has stripped her of her independence & her love of performing & she has to pretty much be “babysat” 24/7/365.  There is no cure for her condition. Her only dream was to perform live again, in front of an audience, a passion which has fuelled her from such a young age. This incredible artist, with the voice of an angel, needed to learn how to sing again. Her dream became a reality, when she managed to perform live in front of millions of people who had lined the streets of Paris & those, like many others, watching live on TV. She proved to herself & everyone else that the impossible is possible. You just have to believe in yourself, your ability to tackle & overcome the challenges when they get in your way & to never give up. 

I have lost my independence a few times thus far on my journey. I have been met with many challenges along the way & I know many more lie ahead.  My body is sore, very sore & uncomfortable.  Life the past few months has been anything but easy.

But, I wake every day. I have a job, a roof over my head, food on my table & I am not needing to learn how to sing. There is a cure for my condition. I am in a fortunate position & for that I am grateful.  The fight goes on.

Be kind. Be thankful for what you have. Until next time, take care.

💜 Caroline X