When the medicine shows whose boss !!

Hello everyone,

Thanks for taking the time to read my previous blog & for the kind comments.  I hope you enjoyed it & could take at least one thing away from my story thus far for your personal benefit. Here I am with my next blog as a means to continue to tell MY version of MY story. I intended to send this blog out sooner, however I started and then life threw me some lemons. So, make lemonade they say. Anyone need lemonade, my supply is overflowing? I had no energy or creative writing skills to finish up. I also do not know Murphy, nor have I ever understood his supposed law, but when you least expect it, there it is.

28 Days is the number of days in my birthday month (excepting every 4 years obviously).  It is also a rather amusing movie starring one of my favourite actresses, Sandra Bullock. Less interestingly, it is classically considered the curing time for concrete.

Most importantly for me though, 28 Days is one complete cycle of my treatment. And my 1st 28-day cycle ended on Friday 28th June.  

Looking back at the first three weeks (of the four weeks) since starting my treatment, the manner in which my body responded was mind blowing.  I looked & felt fantastic on a daily basis, which helped me to continue to have a positive mindset.  I was eating well, managing to do exercise when the weather or my work schedule allowed & working full days every day (with exception of Fridays due to my consults). Just to pause for a moment, I am being disciplined from a work perspective & have set some very strict boundaries for myself. I am however a person who gives 100% to everything I do & where there is a meeting request where I know my contribution or attendance is of importance, I will accept it, even if it takes me over my "new working hours".  I am in control, I am under no pressure from my work teams at all (they are so incredibly supportive & a number of people are keeping a close eye on me), but I am also not someone who cries wolf & will never use this health setback as a means to take my employer for a fool. When I need a time out or need to just take a step back, I can confidently do it knowing I (1) have their support & (2) have a clear conscience about it.

With regards to me getting back to a regular exercise routine, the Cape mornings are too cold & damp for me at the moment & whilst I have no curfew, depending on the time I can get going after work, it is sometimes too close to that sudden temperature drop & I am not wanting to risk catching a cold.  Some days it is just not possible & I am okay with that.  On the days that I have been walking, I have been doing just short of 8km.  I could honestly just keep going, Forrest Gump really has nothing on me, but at some point, I have to get home, so as not to create panic for the family.

My Friday consults continued on a weekly basis, which meant bloods had to be done the day before.  I thought I was becoming a "most valued guest" at the local Pathcare until my visit three weeks ago when the receptionist asked if I had been to Pathcare before.  I am hoping the rolling of my eyes just happened in my head & not actually for her to see, but I am putting it down to the fact that I went on a different day & different time slot which caused my face not to be recognised. Annie at the reception knows me well. She has a sister with Melanoma (only skin) so when she is on duty, I make a point of asking how they are all doing. The team at my local Pathcare are wonderful, huge kudos to the nurses who manage to find a vein in these almost veinless arms, week after week & ever so gentle about it.

To give you an idea as to what the oncologist monitors from a blood perspective:

• U&E, Creatine
• Calcium
• Magnesium
• Phosphate
• Liver function tests (consists of a few readings that are checked)
• Thyroid profile
• Full blood count
• WBC + diff count
• Pancreas enzymes were added for this week’s tests

Because the oncologist knows that I like to stalk my patient profile until the results are released & then I sit to evaluate my cumulative report, she had to give me a bit of a crash course when it came to the liver tests in particular, so I know what I am looking at:

Bilirubin = overall picture (very important indicator)

ALT + AST = cellular function of the liver

GGT + ALP = tubular function of the liver

LD = proxy marker (similar to that of a cancer count for other types of cancers)

My GGT + ALP have been the main areas of concern from a liver perspective, but very good progress has been shown week on week:

GGT has come down from 209 - 134 - 92 - 84 (less than 34 is the benchmark)

ALP has come down from 513 - 420 - 327 - 262, slightly "up" to 269 this week (between 42 & 98 is the benchmark), so although I am still shooting the lights out here, I am moving in the right direction.  An increase in the count is only of concern if it is more than 20% from previous count.

Anyway, back to my consults.  As you will recall from my last blog, one of first consults post starting my treatment, the oncologist was blown away with both my physical improvement as well as my emotional state of mind.

On my second consult, we discussed how I was, how my week had been & as always, I had the opportunity to ask questions.  She then does an examination to check how the liver swelling is as well as listen to my lungs to make sure there is no fluid build-up.  Everything was given two thumbs up.  The only area of concern was my iron count, as this was low & she decided that upon my next consult I would be given a Ferinject infusion.  We left with the usual blood works forms & my appointment card.

The following week, again I felt great. This had become the norm & it felt great to feel great. Between myself & Marisa at Pacso, we hassled the medical aid to obtain the approval for the iron infusion, to allow sufficient time for this to be ordered & received in time.  By Wednesday, no approval had yet been received & the PA called to advise that my Friday appointment may need to be moved.  I was not too concerned at all, although Monday was a holiday which meant that earliest appointment would be Tuesday.  Later that day, my approval was obtained & my Friday appointment was confirmed, but for an earlier time slot.  We were back on track.

Friday arrived & my usual Friday consult anxiety was less prominent than before.  My appointment was scheduled for 10h30, so we planned to leave home just before 10h00.  At around the same time that I was logging off to get going, the PA called me to advise that the Ferinject had not yet arrived, but it was expected any minute.  If it was not too much of a problem, would it be okay for me to still come through, even if I had to wait a while.  I had already planned to work whilst this IV did its thing as it takes between 40 & 60 minutes & sometimes you just need a break from scrolling through social media & seeing which of your conversations Google has been listening to & I had more serious work to be attending to anyway.  Just as we pulled into the parking bay, I was called to say my IV was there, we were good to go.

As soon as we arrived, we were taken into a private room with a very Victorian feel to it.  The wallpaper had a large floral print, the room was cheery & comfortable with a guest chair for Grant.  This was to be our office for the next while. After being offered a refreshment (which I humbly accepted), we were introduced to Dr Gerber, who is an onsite GP that attends to the non-oncology related requests for oncology patients.  She asked a number of questions then proceeded to read through my blood works.  All this time I could see these two very small bottles of iron & trying to work out in my mind how they justify the price of those tiny potions.  These had better do what they are intended to do.  After a brief moment, the doctor looked at me with little expression & said "no, I am not administering this to you" then asked why the oncologist suggested this be given to me.

Now I know I can answer many things, even those things which seem a bit left field, but this question was one which baffled me. All I knew was that my iron count was low.  I also did not pay attention to the fact that my ferritin count from that week's bloods was 2000, which was flagged in red & noted as high.  How would I know why this was suggested? I think that blank look on my face might have been a clue that this one I would need to pass on & so the doctor went to call a friend, quite literally. First, she said she would need to chat to the boss, aka my oncologist & then she made a call to some specialist whom, based on my blood levels also said no, that IV would "make me sick & turn me yellow". This then resulted in the need to find the empty boxes in the bin so that this magic potion could be repackaged to be sent back. The decision was that I would rather be given iron tablets for a few months. 

This week was the busiest I had seen the waiting room in all my visits.  It was filled with a strange vibe which you would expect, one which was not working well for Grant, so he headed down to the coffee shop to wait.  It is very alarming to see just how many people require or have required oncology services.  Different ages, genders, religions, races were all represented that particular day & I almost felt guilty to be feeling so fantastic amongst the sombre mood. Cancer is real, it is common, very common.  Do not think you are immune to it. 

Those of you reading this that have kids that still need to complete school or start studies for a career, may I suggest that they consider any form of medical specialist.  Between consults, my oncologist walks her patients to reception, receives the next patient personally to take to her room, so she is backward & forward all the time.  During one of these "patient handovers", she noticed me waiting for Dr Gerber to provide me with my script.  She apologised for not being given the IV, asked how I was, showed me the goosebumps I give her every time she sees me & then headed down the passage.  That folks, along with a signature on the script, was billed as a consult fee.  I met Grant at the coffee shop to do some work & have a quick bite before heading home & carry on with Friday as if just a normal day.

With the iron tablets, I was up to 14 tablets a day.  10 for the cancer, 2 for my iron & 2 cortisone for the liver, which are now since finished & a new script has not been necessary.

I headed into the weekend & the week thereafter with the same vigour & energy as the two weeks prior & it was another good week.  I had committed to go into the office for our quarterly roadshow, hence me needing to do my bloods on a different date & time to usual, so that I could get an early start into town.  I was a little anxious at the thought of going into the office, seeing all the familiar faces which I had not seen for months & not since being diagnosed, but knew it was another "need to do" event.  Despite being fairly washed out by the time I was home; it was great to see everyone.

We had now reached Friday again.  Whilst people think that time flies when you are having fun, I can assure you, it flies even when you are not having fun as I would not describe this season I am living as fun, in no way at all. As usual, we had a fairly quick consult. My cumulative results were shown on the TV screen & I was given the crash course mentioned earlier.  My protein levels were still low, so I needed to put some focused effort in here to increase this as it is key that these levels are within the recommended levels for the drugs to work at their most optimal level.  She was quite surprised that I am not more fatigued than I am as my iron still remains low for now, even with the tablets. My liver is back where it should be. Some wins and some work in progress.

I really do like my oncologist, Dr Langenhoven. She is relaxed & empathetic & it is obvious to see that her patients & their progress are of paramount importance to her.  Some days she is in her pink or black scrubs & Crocs (Jibbitz included) with funky socks & some days she is in ripped jeans & a pretty blouse.  She calls a spade a spade, a person I can relate to & has a great sense of humour.  Grant asked her if my liver is the main area of concern, hence the heightened focus on tracking these levels but not tracking my spleen or lungs or stomach.  She answered to say that with my liver being the worst infected organ, if there is progress noted here, there is progress in my other organs as well.  If for example my lungs were the main area of concern, I would need breathing tests to check my fluid levels etc. She also mentioned that many cancer patients die from organ failure & not the illness itself, then in her very straightforward yet calm tone, said "another 3 weeks without help, you would have been in full liver failure or dead".  And there is the spade I mentioned. 

Due to my progress, she only asked to see me in two weeks again, so I left feeling really proud of myself & managed to relay the news to my sister before she climbed onto her flight to come home to see me. I have been convincing her for a while that I am doing great and truth be told, I have been, so I have not been painting a picture that does not exist.  She was not interested and booked a ticket to come home for a short visit to see for herself.

I recall on the day that I received my first round of treatment asking the oncologist if there were side effects.  She gave me homework to do, which was to log onto the official website for my medication and see the side effects and what to do should you experience any.  She did advise me that the most common side effect was a fever. I chose not to do my homework, not because I wasn't interested, but because I did not want to read up on side effects and then “experience them” when I was in fact not having any.  Well, that was a lesson learnt and I will not make that mistake again. If you are interested to know, my medication is called Dabrafenib (Rafinlar) & Trametinib (Meqsel). I started on 300mg Dabrafenib per day and 2mg Trametinib per day. Hardcore!

On Saturday morning I woke feeling a little unusual. I felt a bit low on energy & a little bit feverish.  Grant said I felt a little warm but nothing too serious.  My sister was due to arrive at 11h00.  Fetching her from the airport has always been something I do & that day was going to be no different.  I managed breakfast as normal & my mom & I headed off to fetch her. The day that she arrives is also a quiet day to allow her time to settle in & have an afternoon nap in need, so whilst she chilled with my folks, I took myself out for a nice afternoon walk, as was feeling normal again. Later that eve, we enjoyed a nice family braai (barbeque for my UK family) & it was an early night for us.

People experience night sweats for a number of reasons & unlucky for us females, this is also something that you go through at some point in your life when your body starts to go through change of life. Night sweats are not new for me, I have experienced them on a number of occasions over the years, however they have always been considered hormonal & nothing that requires me to plan ahead clothes wise before I sleep. During the course of that evening, I woke from a night sweat & was freezing.  I was just finding it too cold to get out of bed & the thought of changing into dry clothes & changing bedding did not even cross my mind.  I lay for hours, curled up in a foetal position trying to find a way to keep warm & stop the terrible chills I had running up my back.  My hands were clenched & I was keeping them pressed between my legs, just above my knees.  Nothing was helping.  When I eventually managed to doze off, it was just before daylight & I got up not long afterwards.  My fingers were all shrivelled as if I had spent hours in water & I took a warm bath before we headed off for brunch.  I never managed all my breakfast, which was unusual as this was something I had been managing without any issues for the past 3 weeks. When we got home, I needed to lay down.  I could not get warm the entire day & I felt exhausted.  When explaining my evening episode to everyone, Grant was of the view that perhaps I should try go to sleep with less layers of clothing.  He was not sure that socks, long johns, vest, fleece pyjamas, beanie & mittens, along with a heavy down duvet & blanket was necessary.

That evening, I decided to test this theory & removed the unnecessary extras from the sleeping attire.  That however was neither the cause nor the answer for the night sweats & I found myself having to change twice during the night. Without wanting to wake anyone to come & help me just after 02h00, I decided I needed to heat my bean bag in the microwave (I mean, who has a silent microwave right).  I struggled to even make it to the kitchen as I was shaking so much from being cold that I could not put the key into the lock to get down the passage. Whilst that was heating up, I needed to get sick, something which I had also not needed to do in over a month.  I had also only managed half my dinner that eve, another step backwards from where I was with my progress. When I left the bathroom, I found my sister in the passage checking if I was okay.  I gave her reassurance I was fine & she could go back to bed.  I too returned to bed for a few hours of disturbed sleep.  

We had now reached Monday & I needed to work as my leave was only scheduled from Wednesday.  It was a beautiful sunny day, my sister was sitting in a summer dress reading her book, soaking up the rays & then there was me, in a tracksuit, woollen hat, mittens & a blanket, sitting alongside her in the same sunshine, my legs and body shaking uncontrollably.  Not long after lunch, I needed to get sick again. Something was going on here & I was not liking it.  It seemed as if Murphy had come to visit as well, although uninvited. Having convinced my sister for weeks that I was doing great & she really did not need to spend money to come out to see me, here I was, carrying on as if it was 6 weeks prior. I felt useless, again needing to depend on people to do the simplest of things for me and my relationship with my bucket looked to have been rekindled. I emailed the oncologist to advise that I was feverish & having night sweats & getting sick & enquired as to whether I should visit the GP or if these were maybe side effects of the treatment.  I had been on the treatment for 3 weeks though, surely my body had adjusted.  She did not manage to reply to me.

That eve I planned ahead.  I took out 2 sets of pyjamas, 2 sets of underwear, 2 towels & dry blankets & laid them out very strategically, ready for a quick change if needed. And needed it was.

I had still not heard back from the oncologist on Tuesday morning & I was not feeling good at all.  My temperature was 38.8 & my resting heart rate was between 104 & 128. My thighs & arms were so sore to touch or when I moved & my buttocks pained when I needed to sit. It was the first time in a very long time that I needed to take some time away from work to lay down & had become reliant again on Grant & my sister & folks to help me with everything. I asked my mom if she could get me an appointment at her local GP, as I was not feeling up to going all the way to mine & she managed to secure a mid-morning appointment.  The doctor that consulted me noted all my concerns, entered my treatment medication into her fancy database & said that it seems to be side effects to the medicine. I was also not presenting any other symptoms, no sore throat, no cough, no sore ears, no sinus.  Nonetheless, she tested some vitals which were all clear & asked for a urine sample.  She then called Dr Langenhoven outside in the passage.  When she came back in, I could see she had a bit of a wry smile on her face & I said "let me guess, she told you to tell me to put my big girl panties on & get on with it.  It is just side effects". Pretty much. I was to log onto the official website for my medication & see what it tells me to do for fever.

As soon as I got home, I left the research for Grant as I needed to lay down before my next meeting & he found a patient table that pretty much mentioned based on my temperature, that I should stop the Dabrafenib.  Being no medical expert I was not sure if we were reading this correctly & the last thing I wanted to do was stop taking one of the drugs when I had done so well to date with my progress & then potentially set myself back.  I also knew that that I could not carry on feeling like I was.  

I think in all my life I have overslept maybe twice.  I do not rely on an alarm to wake me on a daily basis, unless I have a red-eye flight to catch as you dare not miss your 03h50 shuttle pick up.  But I now rely on an alarm to remind me at 17h30 daily that I need to take my meds.  When I came home from the doc, I sent another email to the oncologist to thank her for taking the GP's call & to ask if she could confirm if I was reading the patient information correctly with regards to stopping one of the tablets.  It was now 16h50 & I had not heard back & was feeling panicked as to what to do.  My dad said another eve would make no difference.  I called & left a message for her to call me.  When my alarm went off with the reminder, I had not had an email reply (even to Monday's email) or a call back, so I went ahead & took my meds. Again, Murphy showed up ten minutes later & I received an email to confirm that I must stop the Dabrafenib.  Murphy was becoming that tenant you want to evict but can't.

I have been saying for months that I need to tidy out my cupboards and give to charity some winter pyjamas which are still in great condition but not being worn. Luckily for me, I never got around to doing that and that eve I had to change four times, needing to make use of some pairs which I intended to pay forward. My leave was starting on Wednesday so I could rest as much as I needed during the day.  That morning, I stopped taking the Dabrafenib in the hope that this would help to ease up the side effects.  In the meantime, my body was still increasingly painful, I had developed a nasty fever blister between my nostrils, and I had these lumps on my right leg.  My legs were also looking bruised. I have never been excited to see the oncologist and as luck would have it, (guess who showed up again…. Murphy), I had no consult scheduled that week with it being changed to two weeks. I was desperate for some kind of explanation for this.  I messaged the emergency number with photos and was advised that I do not need to be concerned, just to keep an eye on it.  At this stage, my next 28 days of meds was ready for collection & I collected this in preparation for the start of round 2.

On Thursday I was feeling a little perkier, even though I had to change five times during the night.  It was becoming the norm & the same pyjamas & linen was being washed on repeat.  My sister & I met a friend for some coffee & cake, followed by some rest for me on our return.  We were meant to enjoy a theatrical dinner experience that eve, which was cancelled by the venue & probably a bit of a blessing in disguise.  A nice quiet eve was had & although I had stopped the meds, I was still experiencing night sweats but less feverish.  I had mastered this by now.  My ankle (same ankle that you might recall I mentioned in my first blog) was also showing some signs of swelling.  I soldiered on, trying to not be distracted by all the discomfort and pain I was experiencing.

The next few days were quiet, although we did enjoy a braai at friends on the Saturday.  Even though I was feeling uncomfortable and fatigued, it was nice to socialise again, as it was feeling as if I was in lockdown level 5. We enjoyed the weekend Motorsport; Euro football & watched a few movies. On Saturday eve, I never experienced any night sweats, even though my body was still in tremendous pain. I was certain that too would pass as during the first month of treatment, the side effects can last 9 days & any reoccurrence can be 4 - 5 days.  I was on day 8. I was also no longer running a fever so decided to reintroduce my Dabrafenib on Sunday as you only stop it whilst you have a fever and I wanted to get back to my miracle drugs as soon as possible.

By this stage, I was experiencing a number of side effects other than a fever. Other side effects include:

• High temperature, cold or flu-like symptoms. I reckon with my temperature around 38.8° I had this side effect and was still experiencing this on & off
• Loss of appetite. Yip tick
• Headaches. Only when I had a raging fever
• Dizziness. Not really
• Hypertension. Nope, blood pressure was stable
• Bleeding. Thankfully no
• Diarrhoea or constipation. Nope
• Feeling or being sick. Oh yes 
• Skin problems. Leg rash & multiple pimple like bumps on my chin & around my nose
• Pain in different parts of the body. Intense pain 
• Swelling in the hands, feet and face. Ankle and leg yes
• Liver changes. This is all I need, but my bloods will show me if there are negative changes 

I had booked Spa treatments for Angela and I for the Monday and even though she was okay if we needed to cancel, I was not.  This was something that had become a tradition for us and I was hopeful a nice relaxing massage would make me feel better. It was also important for me that my sister at least managed to get to enjoy something whilst she was here as had been at my beck and call for days on end. In hindsight, it was probably not the wisest of ideas for me, however my body was no more painful after the massages than before.

My medicine had decided it was going to show whose boss & my butt was really being kicked. On Tuesday my ankle was fairly enlarged and uncomfortable, but I needed to try and move a bit more as well as was laying down again too much. The weather was disappointing, but we felt some fresh air was in order so took a drive to the beach for a short walk and a bite to eat. When we got home, I knew I needed to send a photo of my “tree trunk” ankle to the oncologist.  Not too long after sending it, I was asked if I could come in to see Dr Gerber on Wednesday. Not ideal, as had a long overdue hair appointment booked, but health first as this was concerning me a lot. My body pains had also not let up. But on a positive note, I went to bed and woke with the same set of pyjamas. Big win!

On Wednesday we arrived to see Dr Gerber. She was quite concerned around the swelling as well as the red marks on my legs which seemed to be all along my veins in my leg. She went to call Dr Langenhoven to come and look as well and she confirmed that this is all side effects related to my meds and made the decision to reduce my medication, so I am now on 1.50mg Meqsel and 200mg Rafinlar. 

Thursday meant back to work after my short break. Thursday also meant bloods needed to be done. Due to the swelling, the pancreas enzyme tests were required this week to check for pancreaitis.  Thursday also meant my sister was flying home, in time to be back in the UK for the Robbie Williams concert I gifted her with. It was a bittersweet day.

I have now completed 2 days of my reduced medication dosage. My body is still incredibly sore, even lathering soap when I bath pains me. The pain is mostly restricted to my arms and legs, although I can feel it creeping in under my chin & in my cheeks. Laying is uncomfortable, walking is uncomfortable, sitting is uncomfortable. I feel totally bruised. My ankle is ginormous, I struggle to stand if I have been sitting or standing for a while and the night sweats are back with a vengeance. My fever blister is ugly to look at and my skin has developed a rash. I look like I am going through puberty.

Today I saw my oncologist. It was a good consult. Even though "Dr Irving" as she called me did not think she would be happy with my bloods, she was happy with all my readings, with the exception of my protein level which has dropped.  The fever & the aching body is related to the drugs. The swelling is partially side effects & partially low protein levels. The pimples all on my chin are in fact fever blisters. The night sweats are not side effects of the meds, rather what she referred to as the "yuk cancer cells" coming out. I guess I should then see this as something positive. I am now back to a weekly consult this coming week as she herself will be on sick leave for 2 weeks the week thereafter.  

This illness is cruel. It does not come with a manual of any kind. Its sole purpose is to break you physically and mentally. I am manoeuvring in the dark.  I had a couple of mini breakdowns yesterday eve and that is okay, it is expected, it is allowed. This is my new normal, my body is going to experience ongoing side effects which I cannot control. And no road is perfectly surfaced, there are bumps somewhere along the way.

I might be taking a few punches at the moment, but my gloves are still on. 

Take care everyone. Until next time, I leave you with some reality pics from the past 2 weeks.

💜 Caroline X