When the going gets tough, the tough gets going !
Hello everyone,
It’s been a while since I last felt somewhat up to writing a blog, which could be indicative of a number of reasons: busy, not feeling creative, no news to report or just not in the right headspace to provide any updates. In this case I would like to say that it was because I’ve been too busy or not having news to report, but the reality is that I have just not been in the right headspace. This is going to be a very long read and potentially for some, an unsettling read. Some of the content is upsetting.
Let’s rewind a few months. Towards the end of November & with the timing of my change in medical aid & uncertainty as to when my immunotherapy would begin, my current BRaf treatment stock was starting to become a problem. How my oncology practice (PACS) works is that if a patient no longer requires BRaf treatment but still has medication over from when they were on treatment, you are asked to please “donate” your surplus back to them for other patients that might just need a carryover of meds for a few weeks. This is what another patient kindly did for me & in turn I gifted back to the practice a sealed container of treatment of a higher dosage that I was not going to need.
My consults were still on a monthly basis & my next appointment was scheduled for 12th December. My oncologist was going on leave from that date and the CPT Scan Centre was closing up until 7th January 2025. If we were firm on the 9 week scans, my appointment for my next scan would be for 26th December so apart from the offices being closed, my current medical aid would not consider approving it as I had exhausted my oncology limit already & I was not going to spend R30,000 out of my own pocket, over & above additional medication which I would need as well. As soon as I was moved on 1st January, the request to register me as an oncology patient could commence and the relevant approval for what they call your treatment plan could be reviewed.
When I went in to collect the “donated” meds in early December, I was so in awe of THE most beautifully decorated Christmas tree. My oncologist asks all her patients to bring a pink decoration for the tree and write you name & diagnosis date on it. I found this such a lovely gesture & the priority on my shopping list became a decoration. Pink decorations however are not as easy to find as you think, but my mom found me a beautiful angel ballerina & I found a pink Care Bear which were placed proudly on the tree.
During the first few weeks of December, I had started getting this [annoying] pins and needles type feeling across my chest & upper back, which I could tolerate until I couldn’t. It wasn’t all the time, but when I got it, I was uncomfortable as it just lingered & like with any pins and needles, it was frustrating. Laying on a cold or hard surface brought no relief. I also got what I thought was ring worm on the palm of my hand but had lotion at home to curb the need to scratch. The month of festive cheer was not feeling cheery at all; however, I had something to look forward to & I began to focus on that.
One of my best friends [since 1981] came to SA to visit her mom & kindly blessed me with a short stay in Cape Town. Given that I don’t get out much & spend 90% of my time at home, I thought a mini girl's getaway would do me well, so booked us a lovely beachside BnB for the couple of days. Her hubby also joined us, which was divine. We had a really chilled few days & you know you have a really strong friendship when she happily accompanies you to the local hospital to have your bloods done in preparation for your following day’s consult. That turned out to be an admin nightmare which was eventually resolved a month later. The timing of her visit was great too as one of Grant’s really close friends from Ireland was visiting so he managed to spend time with her & her family after way too many years, which did wonders for him. Then everyone went home & my “normal” returned.
On the 12th of December, which coincidentally was my folks 54th wedding anniversary, I had my oncology consult. It is always so lovely to see the team at PACSO, each one plays such a role in my journey & a more caring bunch of people you will not find. I felt like Father Christmas handing out gifts to some of the team. It was the least I could do for them. Things looked to still be moving in the right direction. There were no areas of concern from a blood perspective at all & other than my pins & needles & scratchy hand, I felt good. I was reminded by my main man that I had lifted a table, alone, which weighs a ridiculous weight & in all likelihood had pinched a nerve or tweaked a muscle. There was no concern expressed by the oncologist either. My next consult was again in a month, date dependent on my PET scan. This scan was due for multiple reasons, primarily as I am scanned every 9 weeks & my last scan was in October & also as the medical aid required it as part of my oncology patient approval. Based on the scan, the oncologist would have an idea as to when immunotherapy could start, bearing in mind that my BRaf mutation still needed to be controlled during the switch over. We thus needed to see sufficient shrinkage or “removal” of the tumors.
At this stage, my medicine was again becoming an issue as I only had enough until the 1st week of January, did not yet have a scan date or consult date & needed to stay on the BRaf treatment until further notice. I asked if we could order enough to see me through until end of January. Ordinarily this was not going to be a problem. It was however a HUGE problem as there was no stock of either of my medications in the country & the expected time to receive it from abroad was unknown. I started to panic as I knew how dependent I was on my meds. Every other day I was following up & the team were tracking the notes almost hourly for me. In an effort to push it out, it was suggested that I only take the meds every second day. Did this mean, only the one that was going to run out one week ahead of the other or both? I had no idea so did what I thought was the correct thing. Thankfully this was only for five days as by some miracle, the meds arrived in SA & mine were ordered & send right away to Cape Town for collection. You would have sworn I had won a dream prize that required collection as the moment it was there, I raced off to pick it up & settle the R16k bill. Panic over! Thank you to those people who have kindly asked if they can create fundraising events or fundraising accounts to help with my medical fees. That is very kind of you. I am alright thanks, I create an awareness around cost to again highlight how important having the correct policies in place are, as without those, this would be financial suicide for us.
As you may recall, I had to make a very concerted effort month on month to ensure my protein count remained above the minimum & every day for almost 8 months at that stage, I had been having 2 boiled eggs for breakfast, with occasional oats or muesli & yoghurt or a poached egg when we enjoyed our weekly breakfast at a restaurant. I was starting to develop a feeling of nausea almost as soon as I took a bite of my eggs. It was not a feeling I enjoyed & one I was struggling to understand. I also found on some days I was feeling full even before I had anything to eat, yet I was starving. It felt like March 2024 all over again. I wondered if it was maybe just mind over matter.
My lack of sleep night after night was worsening & I was adamant not to use sleeping tablets to help me as I had been so strict on not putting any form of medicine in my body over than my treatment. I don’t ever take leave over the Festive Season as my leave is always in February when my sister visits. It was a busy time at work, although not unusually busy yet I was finding that I was needing to take short lay downs almost daily. I really do have a wonderful support structure at work & if I don’t feel great, they happy to help to cover for me. I put it down to my sleep deprivation catching up on me. This was giving me further flashbacks of March last year when I first felt unwell & I had to eventually surrender & take a sleeping tablet on a few eves.
I was still also experiencing the pins & needles feeling in my body & on the Sunday before Christmas my thighs started to pain with this very sharp & sudden cramp. Given that I had not been feeling up to any form of exercise for weeks, I knew it was not over working muscles & I was certain I did in fact have a pinched nerve. Again, having not taken pain meds in months, I had to raise my white flag & take painkillers. The pain forced me to lay down for most of the day. When I woke on the Monday, it had eased up. I wanted to get some relief & reached out to my Chiro friend who very kindly gave me a same day appointment. The session gave me some relief & I started doing what she advised based on the type of pain & area of the pain.
We had decided that we would have a quiet Christmas this year & we chose not to host for the entire family. On Christmas eve, with the help of my folks, we mustered up a lovey Festive spread of meats & vegetables & desserts for Grant, my folks & I. On Christmas day we went for another lovely lunch at Grant’s mom & sister. I was still feeling quite uncomfortable & didn’t eat as much as I would have usually, however it was sufficient.
On the Friday the Chiro kindly messaged to see how I was & I said still a little uncomfortable, so she said to come through straight away as she needed to be at the practice for an emergency so could see me. By now we were convinced I had sciatica & again her magic hands gave me relief.
Happy 2025. We had made it. An opportunity for better things to happen & we were just days away from the birth of our baby grand daughter. I was so grateful that we had seen the back of 2024 as a repeat of that year was not something any of us wanted. I chose to stay in for New Years eve. On New Years Day my thighs started to pain again, causing me to spend all of New Years Day in bed. This year was not starting well.
Grant’s son & wife welcomed their precious baby girl on 9th January & I didn’t hesitate to be at every visiting period to see her. A real little doll. I am obsessed.
A couple of weeks passed by & we met our friends for our monthly brunch. They had just returned from a holiday abroad & it is always such a lovely catch up. One of the most genuine, caring & amazing individuals you will ever meet. I had woken that morning with my thighs feeling a bit crampy. I had become a painkiller addict so suppressed the pain with whatever tablets I still had at home. As wonderful as it was to see our friends, I could not enjoy myself as much as I usually could as the pain was excruciating & I was rubbing & patting my legs looking for any form of relief. Nothing was helping. Not long after settling the bill, I had to ask Grant to please take me home as I needed to lay down. The minute we got in, I downed more painkillers, climbed into bed & managed to sleep for a short while. That evening my legs were still so sore & I just sobbed & sobbed, feeling so helpless & not understanding why I was having such a tough time of late. I remember saying to Grant that I just wanted to feel normal again & catch a break. I honestly have a village of the best people supporting me: my family locally & abroad, my friends locally & abroad, my colleagues & even strangers who have pulled me into their prayer groups. As much as everyone helps me in different ways, wants to help me when I am struggling & would stop at nothing to help me, they too are helpless as they cannot rid me of my condition or remove my pain & this illness can make you feel quite alone.
The following day I again went to the Chiro as I was so desperate & she reminded me that painkillers are there for a reason. If you need them, you take them in a responsible manner. By now I had tried so many different painkillers & I was anxious about what this could be doing to my body. I had no choice. The ring worm on my hand was also not getting better & had spread to the other hand & my fingers so decided to go to the doctor who prescribed a topical lotion for me. Whilst at the appointment I mentioned my leg pains & pins & needles feeling I had been experiencing for weeks. One of the other markers that my bloods had shown was vitamin B, so had started on Vitamin B tablets & wondered if perhaps I had a deficiency that would require a Vitamin B shot. The doctor also thought this could be a cause as could not pinpoint this on anything else, so sent me for bloods just to check my Vitamin B & Vitamin D levels. After assistance from my friend to translate the results as they were issued in Afrikaans, the outcome was no deficiency. We were back to the drawing board. What all of this did highlight to me however was that the more you pay for your medical aid, the more the medical institutions exploit you. I queried why my appointment fee was almost double the fee from last year & the accountant told me, oh yes, we can charge that amount on your plan. Hang on a minute, so are you saying the doctor treated me in a more exclusive manner than he would have if I was on a lower plan? He couldn’t even diagnose anything. I had replay this back to her with an example. If you pull in at a petrol station in a car that you pay R3k a month for or if you pull into the same petrol station in a car that you pay R15k for a month, the price of the petrol is the same. So why was I being charged differently? I was flabbergasted by this & still find it very unethical.
Whilst assisting my dad with a car rental for an upcoming trip, I happened to notice that his driver's licence was expiring before the trip, so decided to check when mine was due to expire. To my surprise, it was expiring in a couple of weeks. I had been aware for some time that I possibly needed reading glasses & thus wanted a proper eye test done so an optometrist could confirm that I didn’t need glasses to drive, only for reading. I thus booked an appointment. It had been about 20 years since I last went to an optometrist as I had lasik surgery done & have had great eyesight since. The optometrist assistant takes an image of both eyes of the optical nerve before you are seen by the optometrist. These images remain on a screen visible to you. I sat there looking at this bright orange circle & was thinking to myself ‘that pigmented oval shaped spot looks very similar to one of the lesions from my stomach biopsy photos' & without being a professional, was pretty certain it should not be there’. The optometrist came in & asked about my eye history & any chronic meds I am on. Whilst I don’t always want to announce to people my condition, my treatment is considered chronic so had to give a breakdown of the last 4 years. She explained that I have an optical nevus [that oval shaped intruder in my eye]. I paused my mind right there. Nevus. That is a word I saw in the original histology report for my head lesion. Exact words were “signs of deep penetrating nevus”. I was not feeling encouraged by this. She went on to advise that these nevus’ are actually very common, it is just like a freckle or skin mole & people are not even aware of it unless they do an eye test. Whilst she was of the view that it did not look abnormal, based on size & position of it, she would normally not refer a client to a surgical ophthalmologist, she would just schedule another image after 3 months & take it from there. Given my history I had just shared with her, she wanted to rather refer me for additional imaging where they are able to see the depth of it as well as the inside of it & should it be a cancerous growth (melanoma), the surgical ophthalmologist would treat with a radiation pad. I explained that I would need to run it past my oncologist as no one is allowed to treat me for anything without her consent. An appointment was scheduled for 26th February. Back to my failing eyes, indeed I needed reading glasses. People that lead you to believe life begins at 40, are setting you up for failure, don’t trust them. My 30’s were so much more enjoyable & less of me falling apart. January was off to a raging start.
By now I had received confirmation of my PET scan & my follow up consult. This was scheduled for 24th & 27th January respectively due to the weekend. There was something about this scan that was making me feel very anxious given how I had been feeling for the past month & a bit. I had a lot riding on it & I needed to stay focused & positive. I had an early scan appointment which needed me to fast from 05h00. On my way to the appointment, I was called to ask that I reroute to a different scan facility as the equipment at the usual centre was not operational. When I eventually found the correct premises, I had to wait in reception & the friendly radiographer from the usual centre came to chat to the 4 of us to give us the expected time of our injection & scan. They were needing to accommodate the Panorama patients amongst their own patients & our radiation was still being transported there. My new time was after 12 noon for my isothope injection & just before 1pm for my scan. I was offered the option to reschedule. This was not an option at all that I could consider so in an effort to focus on something other than my increasing hunger pains, I proceeded to my car to get my laptop & make use of my time. It was also the first time I’d be showing off my new spectacles. After what felt like the longest day ever, I was done & dusted before 2pm & went home.
The following morning, I went up to my local Pathcare for my bloods to be done. My goodness I was butchered. The nurse could just not find a vein & insisted on using the one that she thought was the best option in my hand. Eventually she was seated on the floor trying to get the blood to flow out of the needle as after managing to then insert it [& needing to push it further in twice more], my blood would not flow. I for sure was her careers most testing moment & I knew I would have such a bruise after that.
As you may recall, Grant needed an angiogram in August last year & was supposed to have gone for a scope which needed to be cancelled due to the angiogram & potential outcome of that. He never got around to rescheduling it. He was still having the same chest pain & went to another GP, who referred him for a scope, coincidentally also with Dr Cooper, who had done mine & had to deliver my bad news post my biopsies. Admin is something I am great at, so sent off an email on the Thursday to the receptionist with the paperwork & new medical aid info,but had not yet heard back. I decided I would diarize for Tuesday to follow up had I not had any feedback.
Since finding out about my condition & knowing that my 1st goal was to get to the stage where my body would be ready for immunotherapy, one would think that when the time came for me to receive the news that it would be a celebratory moment. It would be an indication that all the sacrifices I have made over the months, the highs & lows that I had experienced, my body’s ability to fight & my mind’s ability to just remain focused despite one or two occasional setbacks, had all been worth it as the only curable treatment for my condition could start. I have had visions of that day for the longest time, I’d probably be doing cartwheels in the oncologist's office, I know for sure there would be tears & I would tell everyone I know. I looked forward to that day.
We had reached Monday, consult day, blood & PET scan results day & I was feeling very unsettled about everything. Something was telling me that there would be a change, in the wrong direction & I had that nausea feeling lingering from early in the day. Not long after 09h30, I received a call from the oncologists PA to say that there was a mix up with my appointment. On the Friday of my scan, CPT PET Scan centre had called her to advise that they were unable to scan me due to the equipment & thus my 14h30 appointment for my consult had been assigned to another patient as they did not call back to confirm that they redirected me. It was only when my report from Morkel & Partners came in on Monday, confirming my scan had taken place that they realised I needed to keep my appointment & that Dr Langenhoven may be a little late seeing me as a result of the confusion. Usually when I go for bloods on a Saturday, I am able to have sight of the results on the Monday. For some reason, my results only showed that they would be available on Tuesday, which seemed unusual. What was also strange was that there was a locked report under my Pathcare profile for my laparoscopic surgeon, dated 16th January which I knew could not be for me as I had nothing done on that date & nothing with that surgeon, so potentially someone’s report erroneously uploaded on my profile.
Grant & I left for my appointment, my ice cream tub as an additional passenger again as I was still feeling horribly nauseous. The oncologist rooms were very busy. We managed to take a seat in chairs facing the passage so have full view of the medical professionals as they collect patients from reception & see you off after their appointment. Any time we see Dr Langenhoven whilst sitting in reception, she always smiles or taps you on the shoulder to acknowledge that she knows you are there. That day was different. She looked incredibly stressed & rushed & just not herself. Knowing that we still had a wait, Grant went down to get us a coffee from the Cafe & whilst gone, his seat was taken by another patient, so I moved to the seats behind the ones we were on, as Dr Langenhoven had collected those patients. Her PA confirmed that we were next. The oncologist always walks you back to reception to advise her PA next steps relating to appointment | scans | sign prescriptions that she has sent to print etc. When she returned with these patients, she knew I was next & I happened to catch her out of the corner of my eye saying to her PA something about the Morkel report & hand over her face. She then came to call us. This was the 1st time we were seeing her for the year & although almost February we wished her. I asked if she needed to take a 5-minute time out as she looked very stressed. She just shook her head.
Into her rooms we went. Her laptop was closed. The TV monitor was off. Usually, we talk nonsense for a while & she asks how I am & then we always start with my bloods & she will say, “so Dr Irving, how are we looking this week.” There was none of that. In a very calm, soft voice, she asked me how I was. I proceeded to tell her that I was doing okay but had not been feeling great for the past month. I explained about the pins & needles feeling | the pain in my legs | my ring worm [which is not ring worm] | my fatigue & my optical nevus that was picked up. She looked at me, expressionless & said “my darling, that pain is the cancer, it has spread. This is not a good scan.”
Just as a reminder, my initial chest x-ray confirmed the lesions in my lungs.
My gastroscopy confirmed the lesions in my stomach, the biopsies which confirmed the melanoma.
The CT scan done for the trial confirmed the lesions in the neck lymph gland, spleen & liver & the size thereof. My liver being the worst impacted organ & the only reason I was disqualified from the trial.
The PET scan done after my 1st 9 weeks on my current treatment picked up & confirmed the two nodules in my sternum bone & the one nodule in my spine.
My follow up consult after my 2nd PET scan made mention of ‘no change in extent & size” for everything, with no spread, which is what we wanted to see.
I sat for a moment, not quite sure how to feel or respond. I had not yet even seen my scan. How was this even possible? I knew something was wrong; my body was giving me so many signs. Grant asked what one would assume would be the approach to address this, “so do we increase the dosage of her meds” to which we were told, no. She proceeded to open her laptop. She asked if I wanted her to display the scan. As she started to talk me through it & bring up my October scan to compare, she said “this is a very bad scan. Your current treatment is working, but your mutation has found a way around it. I have never seen anything like this.” By this stage I was not sure who was going to breakdown first, myself or my oncologist as I can for sure tell you that delivering this news was as difficult as receiving it & I could see her eyes tearing up. She sat with her face in her hands. I took one look at the 1st full body image & actually asked her if she was sure those were my images. Sadly, they were mine. Looking at the images, Dr Langenhoven confirmed the spread is extensive & has spread very quickly in 3 months. The reason for my pain is because the spread is now in my left arm | collar bones| femur bones | rib | pelvic bone | upper sternum & pretty much my entire spine. Below quoted from the radiographer’s report, which took me about 2 weeks to read as I just could not do it.
Thorax: Increase in number & size of previous extensive bilateral pulmonary nodules
Abdomen | Pelvis: Increase in intensity, extent & size of multiple previous hepatic metastases. New large lesion in segment 4A [which is your liver] measuring 27 mm x 30 mm.
New right adrenal mass measuring 34 mm x 43 mm
New left common iliac lymph node measuring 16 mm
Musculoskeletal: Increase in number, extent & avidity of previous extensive skeletal metastases
The overall notes on the scan were noted as:
Increase in number & size of bilateral pulmonary nodules
Increase in number, size & avidity of multiple hepatic metastases
Increase in number, extent & avidity of previous extensive skeletal metastases
Increase in extent & intensity of splenic metastasis
New bilateral adrenal metastases
New left common iliac & left external iliac nodal metastasis
I then asked that we have a look at my bloods, which she opened & within a second, closed her laptop screen after dropping an F bomb. She herself could not manage much more. With certainty she could also say that the nevus in my eye is melanoma & that I am wasting my time to go for that appointment.
Obviously, my mind was racing at an uncontrollable speed, I could see Grant was visibly shaken & we just kept sitting in disbelief. She then said that she needs to start me on immunotherapy as soon as possible. “I cannot say it will work, I cannot say it will not but I have to try”. She would get Marisa to get onto the approval request immediately & advised that she needs to start seeing me weekly again. The following weeks consult needed to be an hour so she could discuss with us the “what ifs”. In that moment, nine & a half months of fighting with every single fibre of my body, seemed a waste & I can assure you, there were no cartwheels being done. I was sent home with a script for serious pain tablets & told that if I have any pain that is not the usual pain I have managed to date, I must take a painkiller. If there is no relief within an hour, I must come straight to PACSO. If it is over a weekend or during the night, I am to go to ER at the hospital to which the oncologist is affiliated. That being said, I was told to keep an overnight bag in the car, always. My mom was kindly off to the shops later that week to get my new goodies for my bag.
That evening & the days to follow were incredibly tough for my family & friends. The meaning of needing to “get your house in order” seemed more relevant than ever before. As good as I am at admin & always on top of these type of things, you always have doubt & I went into absolute overdrive making lists of things I needed to do to ensure that in the event of immunotherapy not working, that my family are taken care of sufficiently.
I have had many lowlights during my journey:
- Receiving my diagnosis
The toughest one however was hearing the results of my latest scan. It stung worse than a bee. Surprisingly though, despite the emotional turmoil I was processing, I had a sense of calmness to me.
Tuesday came around, it was back to normal from a work perspective. I knew I had to dig deep, not just for me, but for everyone around me & it was a distraction that I needed. I have never let this illness change the values by which I live & I would never hide behind it to get out of my work commitments & responsibilities. When my body tells me to rest, I rest. On my personal to-do list was to call the medical aid | follow up on Grant’s procedure | cancel surgical ophthalmologist appointment. I had been outside early for my dog’s 1st play time of the day [yes, that still has to continue] & came inside to see a missed call from Dr Cooper’s office, assuming they were calling me about Grant. When I called back, the friendly voice on the other end of the call asked “can you be here tomorrow at 07h00 for your procedure”. At this stage, a standard question I kept asking people was “have you got the right person” to which my name was confirmed & the placement of my port confirmed as the procedure. I asked who had requested that & was advised that Dr Langenhoven had messaged Dr Cooper the evening before to say I need my port fitted ASAP. In that case, yes, I will be there for 07h00 on Wednesday 29th January.
For those not familiar with a port, it is a small, implantable reservoir with a thin silicone tube that attaches to a vein. The main advantage of this vein-access device is that immunotherapy can be delivered directly into the port rather than a vein, eliminating the need for needle sticks. My port is situated on the left side of my chest, not far below my collar bone. It is about the size of a 50-cent piece & my tube is connected to the big vein near the top of my heart. The procedure took about 40 minutes in total & other than needing to get used to this small bump in my chest & being cautious as to how I lie, there have been no issues.
I have always enjoyed game shows. I acquired a love for these when I used to visit my Grans in the UK as they both enjoyed watching these whilst having afternoon tea. Most afternoons I sit watching a game show with my dad after work, whilst my mom games on her iPad. One might call us addicts 😊 One of the ones that I watch daily, when possible, is Richard Osman’s House of Games. He always has 4 guests, all which are UK personalities, such as DJ | TV host | Athlete | Author | Comedian etc. I know very few of the guests so seldomly look them up, however on one day he had a guest called Adele Roberts. For a reason I cannot explain, I felt incredibly drawn to this individual. There was something about her vibrant personality & positive energy that led me to read up on who she was. She was diagnosed with stage 2 bowel cancer, was knocking on death’s door & survived. She wears what is known as a stoma for which she is trying to create awareness & to remove the stigma that comes with it. She has set a Guinness World Record last year as the fastest woman to complete the London Marathon with an ileostomy & she set herself a goal of tackling all of the big six marathons across the globe. I “discovered” her prior to my latest setback & if anyone can give me the hope & encouragement I need, it is her. Please do yourselves a favour & read up on her & listen to come of her podcasts. She is a complete pick me up if you ever need that little glimmer of hope.
One week had passed since my life felt as if it had ground to a halt & my next consult was due. I was not sure what to expect, how to feel or if I would be mentally strong enough to hear what Dr Langenhoven had to tell us. She looked her usual self, called us through to her room & asked how I had been feeling. She knew the news from the week before had rocked our world & she started to go through aspects of immunotherapy, some which we knew from the consults for the trial, but it was good to hear again. I had a note pad with me to ensure that I wrote everything down. My immunotherapy will be very 21 days, PET scan every 9 weeks. The treatment is not done at their premises; just a stone's throw away at CancerCare. Existing BRaf treatment must cease as soon as the immunotherapy starts. One of the main side effects, especially for patients with the BRaf mutation is what is known as pseudo progression, which means that your tumours become enlarged which causes swelling & with that comes a level of pain which requires hospitalization. Other side effects, which are time dependent & do not happen all at the same time are: skin rash, thyroid burn out requiring medication to keep under control, diarrhoea, joint pain & possible mild hepatitis. This was sounding like a lot to look forward to! If it saves my life, it is all worth it. If I do not respond to the treatment, a further drug gets administered along with the immunotherapy. We left feeling a huge sense of relief, so much so that we ate out for dinner to celebrate. When leaving her office, she gave me a big hug & I said to her to "please not give up on me as I am not giving up on myself". At the time of this consult, my approval for my immunotherapy had not yet been provided. As mentioned, I have the most amazing team of people looking out for me & I called in a favour & within 2 days my approval was received. My 1st immunotherapy treatment was booked for Tuesday 11th February.
We arrived at CancerCare, totally ignorant as to where we needed to be & the process to expect. I was scared as I had stopped my current treatment the night before & whilst it seemed to not be working as effectively as before, it had become my safety blanket. The staff are all so welcoming & kind & escorted us to the treatment room & how to identify for future treatments under which nurse’s watchful eye I will be. A friend kindly suggested that I get some numbing cream for the port area, the recommendation kindly from another friend going through her own journey & being the big sissie that I am, I asked the nurse if she had some to apply. She did & happily did so, which delayed the start of the treatment by half an hour whilst it takes effect. During this time, Grant took a walk over to the pharmacy to buy me cream & to the oncology rooms to settle my co-payment bill, which is just over R 20,000 per treatment [every 21 days], as the maximum any medical aid will cover is 75% & this is not a co-payment which gap cover consider. Again people, please make sure you have policies in place for these eventualities. My oncology team have applied for funding through AICF, which is the non-profit organization to whom they are affiliated & can consider offering assistance. My application is currently under review, which required a lot of submission of salary evidence | bank statements | expenses.
Once the port area is numb, the nurse injects a needle that has a small tube attached into the tube in the port & to that tube the treatment bag is connected. I was very impressed with the facilities & the staff as well as their cleanliness & that everything they do is in sight of you. Your guest is welcome to sit alongside you on their own recliner & there is complimentary tea, coffee & wifi. I was just told that if I want to get a refreshment, to remember to take my friend [drip pole] with me. We were done & dusted & back home within a couple of hours.
Later that afternoon I needed to lay down, which was for a brief period of time only. I felt tired which was easy to explain as I had built up so much tension around the treatment & my back was feeling a bit uncomfortable & quite crampy. I considered that I was overreacting somewhat, so decided to tackle it head on. My very special friend told me that fighting means that even when you don’t think you can, you CAN. You have to get up & push forward & this is what I was going to do. The discomfort did not ease up terribly much & when I got into bed later that evening, I lay down with my heat pack behind my back as that so often gives me relief. I cannot even recall if I took a sleeping tablet. What I can recall is that I woke just before 11pm in excruciating pain. I decided to take one of my painkillers & see how I felt after an hour. No relief so I repeatedly got up to warm my heat pack to lay on. I was not winning. At 03h00 I tried a warm bath to see if that gave me any relief, nothing. My back was paining, the top of my thighs were paining, my hips were paining, even my buttocks were paining. I knew I needed help & should probably be going to ER, but I refused to wake Grant as he had a follow up cardiology appointment in the morning & I knew if I woke him, he would rush me to ER & cancel his appointment & never reschedule it. His health is as important as mine, so I was never going to let that happen. Just after 05h00 I took another painkiller in the hope that I would get some relief. You know the definition of insanity is doing the same thing over & over again & expecting different results. It was clear by now that I was borderline insane. I messaged the emergency oncology number around 06h30 & sent the oncologist PA an email to advise of my pain & ask whether I should come to them or got to ER. When Grant woke, I mentioned that I had a feeling I would be needing hospitalisation & as expected, that did not go well. “I am going to cancel my appointment”. Absolutely not, you are going. I will ask my dad to take me & I will keep you posted. I checked with my dad if he wouldn't mind assisting me once back from his walk & getting showered & dressed as I had not yet heard feedback to my message or email & of course, he was more than happy to help. Just before 09h00 I asked if we could leave & just go to ER as I needed help & could not wait to hear any longer. I had my overnight bag packed & another packed for Grant to bring up later depending on the outcome. The timing was not great as it was Wednesday morning & my annual leave was to start at close of business on the Friday, so my laptop was crucial. No sooner had we left home & I received a message telling me to come through to PACSO straight away.
I was glad my dad was with me & sorry that my mom wasn’t too, as he got to meet all the wonderful folk that look after me & I think it gave him a sense of comfort when my oncologist was speaking about the pain. The team kindly unlocked one of the spare offices for me to allow me to lay down whilst I waited for Dr Langenhoven & Dr Gerber [the onsite GP]. They were with us in no time & the oncologist sat rubbing my tummy with this huge smile on her face. “I am so sorry for the pain you are going through, but this is a good sign. It means the immuno is working”. I then told her it was not my tummy that was sore but my back, so she kindly sat me up & rubbed my back. She did make it known right up front that I would not be going home, she would be admitting me for a few days, less than 24 hours after my 1st treatment. Goodness me, I like a challenge but not that soon. Her team were already making the necessary arrangements to secure me a bed in the oncology ward, estimated time of admission unknown at that stage. She told my dad that grown men cry from this pain & high fived me for being so brave. Due to no bed at the hospital as yet, herself & Dr Gerber set up the equipment to administer me pain meds & a fluid to keep the body flushed & hydrated. Once this was done, my dad & I were served tea & coffee & really being well looked after. Not long after that Grant arrived. Good news with his follow up. My dad then left to come home. I was being treated with such respect & care, a blanket was given to me, my water bottle was kept filled & after an additional dose of morphine & completion of the sodium chloride fluid, the team went to get me a sandwich at the Cafe downstairs. With us not knowing how long it would take for a bed to become available [previous day a patient waited 7 hours], I sent Grant home as there was no point him sitting there watching me doze & watching a drip infuse. Around 14h00 they received confirmation that a bed was available & again, the team were at my beck & call to drive me over to the hospital. On Thursday morning we knew I was not going to be released. On Friday morning Dr Langenhoven asked if I felt I needed to stay another day & I asked what it would entail for me to manage this from home if she discharged me. After hearing the latter, I asked if I could please go home, mostly as I believed I can manage & wanted to be around my own people, but more so as my sister was arriving on Saturday midday. I was home my midday.
Since being home, I am doing okay, just feeling fatigued & have some discomfort in my back & legs with a little discomfort one day in my side. I wear a pain patch which has similar ingredients to morphine, which I change every 72 hours as well as paracetamol effervescent to take 3 times a day. I am looking & feeling quite swollen in my upper abdomen which makes me not feel like eating much & I cannot eat big portions. I have been having a few night sweats again although not as severe as I had last year which seem to be linked to the opioids. I see my oncologist on Friday again with my next immunotherapy session on 4th March. I am hoping this hospital admission is not going to be after each treatment as that will just do my head in.
My focus for the next two weeks is to relax & spend time with my sister whilst she is here, which has not yet managed to get kickstarted as I have not been feeling too energised for much, but hopefully in the next few days I will feel perfect again & we can enjoy some of my favourite things to do.
Until next time, keep well.
💜 Caroline X
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