Rise and Shine

Hello everyone,

This is my fourth blog, something I have found very therapeutic to do & I am really enjoying sharing my journey. One of the main things I wanted to achieve through my blogs, other than having them to read & reflect on (which I often do), was to inspire people, even if just one. It gives me a sense of pride to know I have managed to achieve that. A few people that follow my journey have privately reached out to thank me for being an inspiration & providing hope for a situation they are or have been dealing with. When family, friends or colleagues ask if they can share my blogs, my answer is & always will be “with pleasure.” Someone out there needs to know that after a storm, the sun will eventually come out. It sometimes just takes a little time. (If you live in Cape Town, you will know how much truth lies in this)

According to the official website for my miracle meds, side effects within the first month can last around nine days.  Any reoccurrence can last four to five days. I had reached day forty five prior to my scheduled consult & whilst they had eased up somewhat, they were still present. I was starting to think this was my new reality, something I just needed to live with that would require new footwear & waterproof pyjamas & bed linen. I only had one pair of shoes that I could comfortably wear & even the zip on those boots was becoming tricky to close. I was dreading needing to mention this to the oncologist as my medication had already been reduced twice & I was not sure what this would mean for my medication & my progress going forward.  

I am not sure if you have ever been driving your car & you hear an usual noise which you tolerate for a while, but then decide you should have it checked. You call & get an appointment to take it in to the service centre & lone behold, on the day on which you must take it in, the noise is gone. Well that is what you call Murphy’s Law & I had already had an encounter with this law weeks prior & here it was again, this time however I was grateful for it.

It was Tuesday 6th August, my oncology appointment. Other than a slightly swollen ankle, I had no other side effects. These meds were playing games with me. It had been two & a half weeks since I saw Dr Langenhoven & the first time I was seeing her alone. Grant was away on a well deserved breakaway in the snow capped mountains & there really was no need for him to be with me, just to go through my bloodworks, wait whilst I have my examination, talk a little nonsense & then leave.  My oncologist was visibly uncomfortable from her operation a few weeks prior, she was in pain. The love she has for her job & the passion & dedication she has to helping her clients get better becomes more evident each time I see her.  She is a wonderful human. As predicted, she did my usual examination, I mentioned the side effects which were not an area of concern for her & we discussed my bloods. Despite my efforts to up my protein, I was a little disappointed as there was only a very slight increase.  All the important indicators are still heading in the right direction, but my iron count is still low, even after almost two months of tablets to try & increase this, so I must have the iron transfusion that was previously cancelled due to my liver count, as this is no longer risky for me to receive.

As you will know from previous blogs, I have been trying to keep fit & walking when the weather has been favourable, which of late, has not been the case causing me to feel frustrated. Prior to my diagnosis, I often did 21 day challenges with my fitness group, many which I saved ranging from LIIT or HIIT or strength. Although they tested me on various levels, I always enjoyed them. I took a break from any form of “strenuous” exercise post my diagnosis as the struggle to complete them prior to that was one of the first indications that something was going on, which would make sense given that my lungs are one of my impacted organs. My body just hasn’t been ready up until now.

Later that week was a real treat for me. One of my best friend’s husbands was here in Cape Town for a few days & we got to spend a relaxed eve catching up over dinner. It meant a lot to see him. Himself, his wife & kids are considered my chosen family & I miss them all terribly. It was also Women’s Day that week, a welcome holiday for a Friday. When I woke I knew it was a day when women in South Africa are celebrated for being strong & courageous.  Between taking my meds & being allowed to eat, I have an hours wait.  Usually on a work day I use that time to sort out the dogs, bath, dress, log on & start with emails. I have become strong & courageous, more so than ever & I wanted to remind myself of that. So as soon as I had fed the dogs, I got dressed, this time in my gym gear, fired up the PC, loaded up an old challenge & gave it horns. It was time to rise & shine. I managed the entire 34 minute workout, needing only a few power naps.  I was on cloud nine. It was a BIG moment for me. My comeback had levelled up. On Saturday & Sunday, I could hardly walk but not as a result of side effects. My body was so stiff, it felt broken. It felt fantastic.  

Over the past few months I have realised more than ever the importance of medical aid.  I have also questioned some of their decisions. When my initial treatment request was submitted, it was for a 6 month repeat of my BRaf medication. The medical aid eventually, after needing to upgrade my plan at an exponential monthly premium increase, approved only 3 months with a condition that a PET scan would be required before the additional 3 months could be considered. I am not sure why they would need to doubt a highly qualified individual like my oncologist, whom has been recognised for papers she has written on Melanoma as to how many months at a minimum I will need.  That being said, Dr Langenhoven also wanted a scan done, which was only due at the end of the month. 

I asked for a few days off work as Grant was scheduled for a medical procedure & was due to be hospitalised at a facility about 35 minutes away from us. There was a chance he would need to stay for 2 nights so I didn’t want to be juggling meetings & emails with visiting hours & travelling to & from the hospital. Coincidentally, after applying for my leave, I received a call asking if I would be able to come in for my scan on the 15th, the time which worked well for me between hospital visits. The scan which the oncologist & the medical aid require is a PET scan. I had never had a PET scan before, as the clinical trial required a CT scan & whilst similar, the way in which the extent of the cancer is reported & viewed is different.  For my CT scan, I was required to drink that awful conconction ahead of time & the scan is done with you to dressed in a theatre gown. I was expecting something similar for the PET scan, but the manner in which these scans are done is very different.

The PET scan required me to fast for 6 hours prior to the scan with the exception of unflavoured water, as well as no strenuous exercise for 24 hours before the examination. After some completion of paperwork, I was taken into the patient waiting area, where I had an assigned bed. The nurse explained that she would insert the drip for me, after which the radiographer would inject the Isotope, which the body then needs to absorb for 40 minutes before the scan is done. The body needs to be as warm as possible for the scan so there were plenty of lush blankets for me to keep myself warm in preparation. At this point, the challenge to insert the drip began. First attempt, unsuccessful, so out came the needle from my arm & the second attempt in another area of the arm commenced. No, that too was unsuccessful. At this point the nurse said, “I am going to get someone else. I am not sure why I am battling here”. She left & the radiographer herself came in for the 3rd & successful attempt. At the same time she administered the Isotope. Once the drip has finished, you are required to drink two cups of water & ten minutes before the scan, you are asked to empty your bladder.  I assumed I would be given a theatre gown, however for the PET scan you remain dressed in your clothes.  I was not appropriately dressed in jeans & a tracksuit top as both had what was considered metal, so I was given nurses scrubs to change into.

The scan itself takes 30 minutes. I had to lay on this fairly narrow surface, fully clothed & then got strapped in across my chest & feet & covered with a blanket.  Just where did they think I was going to escape to? You go through the scanner thrice, once very quickly & then twice very slowly. The key is to stay dead still and keep your eyes closed as the roof of the scanner is very close to your face & you are in there for quite some time whilst the images are taken. The half hour went quite quickly before being set free.  The results are released by 14h00 the following day, thus today my oncologist would have received them.  I was due to see her, however asked for the appointment to be moved until Monday as Grant wants to be with me when they are shared & we were unsure as to when he would be discharged (which ended up being today & all is well with him). With Monday being a consult, bloodworks were needed today again. Thankfully the nurse at Pathcare handled my panel beated arm with care. So for my colleagues that are reading this, when you get my “I will be on leave” email, it is not for spa days or trips to the ocean. Of late, I am doing less relaxing & fun stuff.  I look forward to being able to take leave for more relaxing type activities.  

I have been asked by a few people if I am nervous for my results on Monday & the answer is no. The results of the CT scan I had previously were presented in a word format & reference was made to “immeasurable” which is defined as “too large, extensive or extreme to measure”. A PET scan shows an image of the body with black spots marking all the cancerous cells. I do not know what a previous PET scan would have showed, presumably many many black dots, a bit like a Dalmatian dog. I am confident that my treatment is yielding positive results & am hopeful that this Cruella is dealing with just a few puppies now and not 101. I feel great, so something is working & working well so I continue to celebrate the small wins & deal with any setbacks should they arise. Sometimes I feel as if I am having a really bad dream & none of this is a reality.

Then there are reminders. Like today, as I write this, it is Friday 16th August. It is 4 months since receiving THAT life changing call which sent me temporarily on a downward spiral into a place that I hope to never find myself again. Looking back, I am proud of what I have achieved mentally & physically during this time. Either you control a situation or it controls you. I have never felt more in control than I do now. 

Until next time, take care. Stay in control.

💜 Caroline X