So, how did I end up here with cancer at age 24? While I may never know what caused the cancer, I have kept a logbook of the journey. Below is a breakdown from most recent developments to original diagnosis at the end.

May 2024:

It took 12 days but the intense pain started to subside, the sore on my tongue has progressed but doctor has assured that it does not feel too much of a concern. Immunotherapy has come with an interesting list of side effects including night sweats, fatigue, acne and a terrible cough which I will be sure to get into on my procedures and treatments page at a later stage.

With the second round of immunotherapy planned for the 24th of May 2024, we remain hopeful that each day brings more comfort and an improvement in my tumors.

April 2024:

April is Oral Cancer Awareness month! To celebrate and raise awareness, I was lucky enough to raise some awareness with my colleagues at work. In addition to this, family of mine went above and beyond to raise awareness.

On a recovery front, the first half of April was spent silent post surgery to ensure my stitches remained closed. I slowly started drinking on my own again with immunotherapy treatment arrangements being made. At this stage, I am planned for a treatment every 3 weeks for 6 months with the aim that my immune system begins working to fight off the cancer cells on its own.

Unfortunately, I started experiencing intense pain in my jaw and ear mid-April and found a sore on the healthy side of my tongue. I had a CT scan done at the beginning of April and all looked clear, I had another at the end of April and it indicated that the cancer had returned in my tongue and neck which is not what we wanted to hear. Within three weeks, my cancer had returned yet again.

After being placed on some strong pain medication including morphine, I had my first immunotherapy treatment at the end of April with the hope that this would start to improve my cancer symptoms.

March 2024:

In early March, I had my peg tube changed from a standard peg in which the tube is connected to me, to a Mickey tube in which the tube itself is an attachment. Seeing as I am quite a way off of eating 3 meals a day on my own, doctor felt it would be best for my comfort (he was 100% right on that one). In addition to this, I was scheduled for my 3 month post-treatment scan at the end of March with follow ups scheduled for May.

This did not go according to plan unfortunately. My pain medication intake started increasing drastically as of the beginning of March due to increased pain in my jaw and ear. My doctor requested I go for an MRI ASAP to check is all was in order as increased pain in not usual for this point in recovery.

Sad to say, the results of this scan along with a sonar of my neck and small biopsy of the tip of my tongue (due to a small area that was slightly discoloured and not healing between the tongue & flap) – all confirmed that the cancer had returned. Needless to say, doctors are stunned that I have recurrent cancer in my mouth & now neck with the chance of cross migration being 2% (movement from the primary site being my right side of my tongue to then recur on the left side of my neck) and within 10 weeks of completing treatment is unheard of.

As a result of this I was quickly booked into theatre and underwent another partial glossectomy & neck dissection. Cancerous lymph nodes were found to be quite high up in my neck near my skull which is why I was experiencing pain in my ear & jaw. Currently, doctors are looking into alternative options for treatment to see how best we can approach this cancer while I recover from surgery.

February 2024:

February, I returned to work & what a joy it has been to go back to a normal routine! I was mostly off pain medication taking only 1 or 2 tablets a day to assist in the eating of dinner – all other meals remained tube fed. Other slight aliments were a sore jaw and ear on my left which I deduced to being part of the adjustment to talking and eating more than the month before. I saw both my oncologist & surgeon for a checkup and both were happy with my progress. Patience is key in recovery!

When I first became sick, I was told that I could choose how we mark the occasion when I had completed treatment. What better way than with permanent ink to mark the journey? (of course with clearance from my doctors) Phoenixes are a symbol resilience, renewal and hope while the wording Dum Spiro, Spero is Latin for While I Breathe, I Hope.

These are the sentiments that carried me through my journey & I will forever keep close to my heart.

January 2024:

January was a month of learning and adjusting. I have been advised by doctors that I am currently classed as cancer free and that the next 2 years will be pivotal in ensuring we keep track of any recurrence with checkups approximately every 3 months. Checkups will continue thereafter bi-yearly until we have 5 full clean years.

What I did not know is that radiation effects last for months after treatment has finished. I was fully expecting to be back to feeling great within a few weeks and that was not the case. I am still not able to eat on my own and this could easily remain for months to come. The swelling and discomfort can last up to 6 months and I will have a slurred speech that might improve but will never go away. Being conscious of overexertion when speaking is another serious consideration when it comes to interacting with others (this one has been an adjustment as I used to love talking). This has been frustrating but everyday I grow stronger and for that, I am grateful.

It has been a month of readjusting to my new normal & I am so blessed to be excited about life again. There are so many adventures to be had!

December 2023:

This is when the radiation side effects really start to hit. Lucky for me, my weekly checkups with my oncologist and the ongoing check ins with my surgeon, I received consistent support and medication to manage these issues.

December 22nd, the final day of radiation treatment – just in time for Christmas. Even when you feel terrible & know it will remain that way for a while, it is the best feeling to know you’ve completed the treatment!

November 2023:

November 13th, radiation day 1:

I was handed a full 6 week treatment schedule detailing my treatment time slot & weekly checkup times and days with Dr. I was called into the treatment room and strapped onto the bed with my specially made mask and instructions to lay as still as possible. After about 10 minutes of the machine whirling around me, the radiation therapists returned to unstrap me and home I went.

October 2023:

Early October consisted primarily of checkups with both surgeons involved in my procedure and a few appointments with a speech pathologist who worked to help me regain the ability to eat and swallow properly. After not being able to eat or drink anything for 2 weeks, this was quite the experience. I was also given exercises meant to keep my mouth and tongue moving during recovery and radiation.

This month also marked the decision to change oncologist. After feeling that my post-operative check-in with my initial oncologist did not reap the intended result and rather led to misinformation and a concern on my part that the remaining treatment would not be treated with the urgency it needed.

Radiation has to start as close to 6 weeks post-operation as possible. With that in mind, I met with a radiation oncologist who jumped into action to arrange treatment and explained that I would be receiving a 10-15 minute treatment every week day for 6 weeks (30 treatments total) as well as the side effects to expect. By the end of October, I had my radiation planning scan done and was awaiting treatment start date.

September 2023:

September 4th, I received a call to confirm that I had an appointment with my new doctor the following morning.

Dr did an investigation into my situation and explained that operating would be the best way to remove the cancer. I was informed that I have a U19 Negative tumor which is characterised by the following:

• Difficult to trace the origin
• Aggressive in its growth
• Stubborn at responding to chemotherapy

According to Dr, while the chemo would help prevent cancer spreading, it would not make the tumor disappear. The only way to do that would be through surgery. He was genuinely surprised that my cancer has reduced as much as it did through chemo but did not feel much more would be achieved through further treatment.

As such, Dr immediately requested I have a sonar of my neck done along with an MRI of my head and neck to obtain clearer images of my situation to prepare for surgery to remove the tumor.

Upon my new surgeon and oncologist consulting, it was decided that chemo would be stopped and that surgery would take preference. I was informed that I will be meeting the plastic reconstructive surgeon who will be involved in the operation. The surgery was booked with radiation planned to take place after.

Having met with the plastic surgeon, I was provided a clear understanding of his involvement in the procedure as well as the post-operative plan to ensure a good recovery.

September 20th, the longest day of my life. I was rolled into theatre at around 16:30 and after almost 6 hours in theatre, I emerged with the cancer having been cut out and replaced with muscle from my arm. I was immediately transferred to the hospital’s high care unit where I spent 2 very long days. After Dr & the medical team were satisfied I was out of any immediate danger, I was transferred to my own room where I spent another 2 days. I am proud to say, I was out of hospital within 4 days. I had weekly checkups thereafter with the plastic surgeon to check on and redress my wounds sustained.

August 2023:

Chemo round 3 commences. The blood tests from the day before were positive with the injections doing the trick to boost my white blood cell count. Plus the oncology center had some therapy dogs in which is always a mood boost for everyone getting treatment! This was also the day that both my mom & I went and had our heads shaved. The continuous hair loss was getting on my nerves.

The relief this day brought knowing that this is the last planned treatment of the preliminary treatment plan. The final round was not too bad during but I have found that as the treatments have progressed, my body become weaker & takes longer to bounce back to normality. I have struggled with more side effects than before and took 2 weeks for my eating to return to normal. Along with this came another round of blood cell boosting injections for 5 days post chemo.

Blood tests confirmed all was in order with liver function for the next PET scan planned for the following day. The post-PET scan consultation with my oncologist confirmed that the tumor had shrunk by 50-55% which was a great relief! Dr requested that I go to see the oral surgeon assigned to my case to have a look at the progress and discuss if an operation could be performed or if more chemo would be needed first.

We went into this consultation hoping for some clarity. Unfortunately, we left with more questions than answers with the doctor not providing any insight or confidence in being able to remove the tumor and what type of operation would need to be done to achieve this.

As such, I requested a second opinion from my oncologist to arrange for me to meet another doctor in the field. In the interim, he had planned to proceed with another 3 rounds of chemo due to the surgeon not being able to operate at this stage.

I received notice a few days later that I was on the waiting list for another surgeon based in Pretoria. This doctor is an ENT (Ear, Nose and Throat) Doctor who specializes in head & neck cancers.

July 2023:

The day before my second round of chemo, I went to go for blood tests to confirm my system is strong enough to handle the treatment (this is standard procedure).

Back to oncology for round 2. I was not in a good space this day. I was advised before starting treatment that my hair would not fall out during chemo (which was a relief at the time). Imagine my surprise when my long hair started coming out in clumps in the shower the evening before.

A positive was that seeing doctor only reaped positive results. My blood tests indicated that all my vitals were okay, I had managed to pick up the weight I lost during chemo round 1 & my tumor is looking good.

We were off to the hairdresser for an emergency cut after being connected to my drip. While I am still losing hair & will probably end up bald soon, the short hair loss is far easier to manage. I’ve never had short hair, I can’t say I hate it to be fair.

Overall round 2 was a bit kinder to me. I do feel keeping a routine helped keep my body and mind centered during the process. My mouth & throat started to swell shortly after treatment was an indication of the worst mouth sores imaginable. Thankfully, they were all gone in a few days.

Unfortunately, the oncology team called the day before my final round to confirm that my treatment would have to be postponed due to a low white blood cell count. I was advised that the chemo had started to affect my bone marrow’s ability to produce white blood cells (which enables your body to fight infection). As such, we were shown how to administer home injections that aim to boost the bones’ production of white blood cells. Side effects experienced include back and rib ache as well as headaches – nothing some Panado’s can’t fix though!

June 2023:

The oral surgeon who I met earlier in June requested that I come into their practice for a discussion. This was such an insightful discussion as doctor expressed to me the importance of oral hygiene when undergoing chemotherapy & strongly recommended I see an oral hygienist for advice. Doctor also shared the idea of keeping a logbook of events to keep track of my appointments, procedures etc.

June 6th, chemotherapy implant day. I was rolled into theatre around 09:30 that morning & was done within an hour and a half. I had terrible back pain which was strange as they had operated on my front but doctor explained that it was likely from the angle that my body was held at to place the implant. Both doctors returned after the procedure to confirm that all had gone well and they were happy. Regaining feeling & movement in my arm took around 5 days with my wound being covered with a watertight plaster to protect the healing cut while showering.

Per the oral surgeon’s recommendation, I managed to locate an oral hygienist who had experience with oral cancer patients. They did an inspection of my mouth & proceeded to clean my teeth before placing a gel protection over my teeth. In addition to this, they advised that it would be important to floss my teeth on a daily basis & provided a recipe for a mouthwash that would help to keep infection away during my chemotherapy treatment. This was probably the best this I did before starting chemo.

Chemo Round 1:

Upon arrival at the oncology center that morning (you are welcome to eat breakfast before treatment & bring your own snacks along), we met with the oncologist who confirmed that the tumor has definitely gotten worse (at this stage I was speaking with a pretty intense lisp due to the swelling). He was confident that the treatment would work. The nursing team then sat me down to discuss the potential side effects & sensations I will feel with the treatment.

Thereafter, the nurses hooked my port up for a full kidney flush to ensure that both the port and my system were working. I have linked a great video by Hank Green explaining the importance of working kidneys when having chemo here. NB! Drink cranberry juice to help flush your kidneys!

5 days later & round 1 is complete! I went into the center to be disconnected from my infusion pump. The nurses instructed that I keep drinking the nausea medication I had left to keep the symptoms at bay. Important to note: mouth sores, nausea and fatigue do not end when chemo does. Round 2 scheduled for early July.

May 2023:

I’m off to see the dentist as the wound had started looking worse than it had before. At this stage, I had not experienced any side effects to this wound & was not in much pain either. I explained to the dentist the amount of medication I had been taking to try induce the healing. Once he looked in my mouth, he immediately referred me to an oral surgeon. He requested I get an appointment within in the next day or two, he would contact the surgeon himself if necessary. I was not aware how serious he was being at this stage & I still thought that I potentially had a rare type of infection that could be easily treated. Plus, I hardly looked unwell. Here’s me on the 6th of May 2023 – I can’t possibly be sick, right?

Appointment with the oral surgeon at 09:00. Doctor had a look at my issue and immediately requested I be booked in for him to perform a biopsy the next day at a local operating center. At this stage I had also began to develop mouth sores along my gums. Doctor explained that a small sample from the lesion site would be removed & taken for pathology testing. Recovery and results should take about a week with the stitches limiting my ability to eat & speak properly. My original wound had started taking on a deformed shape under my tongue with discolouring of a white/grey shade in some parts.

Having left that appointment, 2 of Doctors questions that made me apprehensive were:

• Is there cancer in your family?
• I had explained that one grandfather had prostate cancer & one of my grandmothers had cervical cancer that was treated by hysterectomy. Doctor explained that those 2 types of cancer would not relate to the mouth.
• Who is your support system?
• Doctor requested to meet my parents before the biopsy & please have them accompany me when we discuss the results.

I was at the operating center with my parents at 06:00 to find I was first on the operating schedule. The biopsy procedure itself was fairly simple. I was under anaesthetic for just over an hour & woke up with a few stitches but relatively out of pain. A long list of instructions on what I could & could not eat along with a prescription for pain medication was provided & I was told I would be contacted once the results were back.

After 5 days awaiting the call, the oral surgeon’s office called to say I should come in the following day to discuss my results & remove my stitches.

May 17th was, hands down, the worst day of my life – my world crumbled upon hearing ‘I’m sorry my angel but it’s not good news, the sample we took confirms that you have cancer’. At 24 years of age, with hardly any other medical conditions, it’s a tough pill to swallow.

The oral surgeon was kind enough to explain that while he does not specialise in treating oral cancer, he has made a provisional appointment with an oncologist nearby who will work with the relevant oral surgeon & team to decide on a treatment plan.

Appointment day: we met the oncologist responsible for deciding my treatment & helping me beat this cancer. Doctor works at an oncology unit with the unit fully equipped to administer chemotherapy & radiation with a medical team and nurses to boot. A file was set up & we were called in to meet Dr. after taking all vitals and sharing my details. Doctor explained that a few details were unknown regarding my cancer which were:

• What stage was this cancer?
• Had it spread?
• Would we be able to operate now or would chemotherapy be needed first?

Cancer is traditionally treated first through surgery to remove as much of the tumor as possible. The remaining cancerous cells are removed using chemotherapy. It’s not easy to undergo surgery after having chemo due to the toll it takes on the body. In my case, however, being that my tongue was affected (an important oral function), it was to be decided as to whether operating would be dangerous or preferable.

As such, my oncologist required that I go for a PET/CT scan and go to meet with a specialist oral surgeon to obtain his opinion. Fortunately for me, the team were able to book my in for the scan for the following day along with an appointment to see the oral surgeon a few days later.

So upon confirming the PET/CT Scan would be taking place, a long preparation list was shared of do’s & don’ts before having the scan done. Briefly speaking, the scan is designed to confirm the stage of your cancer & if the cancer has spread at all.

This day we met the specialist oral surgeon recommended by the oncologist to discuss the results of the PET scan and potential options for treatment. Doctor inspected my mouth and the scan results and advised that he would share his thoughts with the oncologist soonest.

I called the oncology center & requested to speak with my oncologist as a matter of urgency. I had been requested to meet with yet another surgeon & still not having certainty on the way forward. Doctor called be back prior to my appointment with the specialist & shared that it had been decided that operating as this stage is not advisable due to the size of the tumor. Therefore, I would be starting a fairly aggressive chemotherapy treatment, starting with 3 rounds to be reassessed thereafter.

This treatment would take place over a 96-hour chemotherapy infusion drip. In order to administer this treatment, I would need a chemotherapy port. Good news: I would be able to have treatment at home & wouldn’t be lose my hair at this stage. Doctor then requested that I please see the specialist surgeon to have this chemotherapy port implanted should I agree.

It was agreed with the specialist surgeon that the port would be the best option & the surgery was booked for the 6th of June 2023. More on this procedure can be found on the Procedures & Treatments page.

April 2023:

Coming to the end of April, the wound was looking better by the but was slowly showing a strange colour. I decided to head back to the medical center. Being a long weekend, the doctor I saw previously was not in. I saw the locum doctor on duty & explained that I had been on 2 rounds of medication & my wound had not healed. Doctor prescribed medication & recommended going to see a dentist as they may have a better idea on how to treat this kind of wound.

**This page will be updated as & when I have more to add about the journey**

Closing thoughts:

The week of the 23rd to 26th of May was a fraught one filled with confusion & uncertainty. I do have to applaud the medical team for being to swift in acting to ensure that I was seen to with urgency.

I will admit that especially during the course of identifying this cancer, I had an incredibly hard time accepting that I am sick because I didn’t feel too unwell and had been healthy most of my life. It was a frustrating experience to acknowledge that I would have to get sick if I was to have any chance of getting better. It was only really before I started my first round of chemo that I realised that if this is not treated, this cancer would destroy my mouth & that this is the best way forward & to accept the help of others to get through this experience.

This diagnosis has absolutely changed my life, I am grateful in a way that the location of my cancer is in a place that can be seen. I dread to think what could have happened if this cancer began at another internal location of my body. With cancer being so rare at this age, it could have taken much longer to identify than it has been.

Lastly, there is an invaluable importance to keeping a positive mindset when experiencing a journey like this. Things will get better. You have to eat. Listen to your body. It will be okay in the end.