Tumor Removal:

This was the life saving surgery that was done to remove a tumor and aggressively treat the cancer. Learning about this surgery was a surreal moment. I was in theatre for just under 6 hours on the 20th of September and spent 2 days in high care & 2 days in the normal ward before I could go home.

Below is a list of what the surgery entailed:

• Direct Laryngoscopy + Esophagoscopy
• Peg Tube Placement
• Neck Dissection
• Mouth Floor Ressection
• Partial/Hemi Glossectomy
• Reconstructive Surgery
• Skin Graft & Flap Removal & Placement

The doctors and surgeons involved in the procedure were as follows:

• Otorhinolaryngology or ENT surgeon specializing in head and neck cancers
• Plastic Surgeon
• Anaesthetist
• Pathologist

A direct laryngoscopy & esophagoscopy simply refers to the process of placing a camera down your throat and into your stomach. This is done to assist the doctors with the placement of a peg tube which is designed to do the work of your mouth while it heals. All food is cooked, blended and sieved before being fed through the tube with large syringes. No, you don’t ever feel hungry or full when being fed this way. I couldn’t eat or drink anything for 2 weeks post surgery! That first sip of water was magical. The peg tube and port will be removed after I am cleared by doctors after radiation.

The neck dissection refers to the removal of lymph nodes and salivary glands from the neck to test for cancer. It was imperative doctors tested them as this is the first place oral cancer spreads to. Happy to report, they all came back clear!

Then for the biggie, the glossectomy and mouth floor resection. We initially went in planning for a partial glossectomy but ended up having a hemi-glossectomy. A partial glossectomy would entail only a small part of the tongue being removed. My tumor was larger than planned and resulted in a hemi-glossectomy which is the removal of half of the tongue in a lateral direction. To remove the cancer from the floor of my mouth, a mouth floor resection was done. The pathologist is in theater to study the tissue removed to ensure that all cancerous cells are removed before starting with the reconstruction. Reports from surgery confirm that all notable cancer has been removed from my mouth.

Then onto the reconstruction part of the procedure. To replace the part of my tongue that was removed, doctors made use of a radial forearm flap. Feel free to Google it, the images are not appealing to post here. This involves cutting blood supply to your arm and removing muscle from the arm just before the wrist and harvesting a blood supply from your arm to keep the flap ‘alive’ as doctors say. This can also be done by removing part of the thigh but there is higher success with the arm. This flap is then positioned where the cancer was removed (the flap is measured in advance) with the blood supply then connected to the supply in your neck.

A skin graft is then taken from the thigh and then placed over the arm where the muscle and skin was removed. Yes, half of my tongue is now the colour of my skin and not pink). I now have my fair share of battle scars but in a weird way, I was my own donor and that is the miracle of advanced healthcare.

Post-Operation:

The first few days post-operatively were truly a blur to me but are imperative. Doctors have to ensure that the flap attaches to my remaining tongue and that the blood supply keeps it alive. The flap would need to be redone if the blood supply did not connect. Fortunately for me, the flap took without issue. Physio came by daily to help me with my movement and breathing. I was off breathing assistance within 2 days and had my neck drain removed by the 3rd day. An ICU professor was also overseeing my stats and vitals at all times and a dietician came by daily to oversee the dosages of high protein liquid food was fed through my tube. I expected to have difficulty speaking but was able to form a few words within 2 days which was a relief.

My ENT surgeon and plastic surgeon scheduled regular checkups on the progress of the flap and the healing of my leg, arm and neck. I met my speech therapist about 2 weeks post-surgery who has been responsible for ensuring I was able to swallow without issue and slowly introduced food back into my diet. They provided me with exercises designed to help me improve my speech and swallowing.

By all accounts my speech was sounding positive with both surgeon and oncologist commenting that I can be well understood within 4 weeks which usually only occurs within 8 weeks post-operation. Doctors have warned of a likely permanent slur in speech as a result of removing so much of my tongue and mouth floor and having it replaced with one large piece of muscle that has made my mouth far smaller and restricted in movement. As a result of this, I now have a slightly lopsided smile and changed face shape. As my speech therapist says is great as I will only ever be half angry! I have essentially had to learn to eat again with my tongue no longer having the movement it once did.

Another interesting learning curve has been adjusting to the taste of foods. As we all know, our taste buds are more or less mapped per the below graphic. Having had much of the right side and a fair portion of the front removed and replaced with part of my arm, I have had most of my sweet taste buds removed and half of the others. So while my donor flap helps me to speak and swallow, it does not have the ability to taste like a tongue should. Things like Energade now burn as I can only taste the citrus taste and not the sugar aimed to balance it out. So my diet has changed a fair bit.

To ensure that any potential remaining malignant cells in the head and neck area are removed, it is important that surgery is followed up by radiation . This is done 6 weeks post surgery and is planned as a daily 15-20 minute treatment for 6 weeks (30 treatments).

Scans:

The PET/CT Scan

When going for a PET/CT scan you get sent a long list of do’s & don’ts before having the scan done. This includes having a sugar free diet the day before the scan, only drinking water & eating protein, a limited amount of vegetables and not exercising before the scan. Apparently all of these things can effect the scan results negatively. The scan is designed to confirm the stage of your cancer & if the cancer has spread at all.

While I’ll try my best to explain my experience, I have also attached a video by Hank Green explaining the more technical version here. (Hank has easily become one of the most relatable people who has helped in explaining the way some of these treatments work in the most lighthearted & easy to understand ways possible).

You’re allowed to drink your daily meds as long as they are not sugar coated. The nurse injected me with some medication and ushered me into a small room where I was left for about an hour. They advised that I could take a blanket but no cell phones or books allowed (make sure someone comes with you to look after your belongings). Part of the medication definitely included some sedation so ensure I laid still during the scan.

The nurse came back & requested I drink a small vial of liquid that tasted of licorice & ushered me into the room with a large scanner. I was laid down & strapped to the moving base of the scanner. It is imperative that you do not move during the scan while being moved. After a brief observation period I was advised that I could go home & was handed a CD disk with imagery of the scan for the doctor. This was the standard procedure for both PET/CT scans I have had.

The second PET scan was helpful to confirm a shrinkage in the size of the tumor. It was not able to clearly indicate the location of the tumor in the mouth.

MRI

Understandably, having cancer in your mouth makes it incredibly difficult for these machines to accurately read and measure the size, depth and exact location of my tumor. My ENT doctor requested I go for an MRI of my head and neck as well as a sonar of my neck as a means to obtain as much imagery of my tumor as possible in preparation for surgery.

Fortunately, no dietary restrictions this time around. A big consideration with MRIs, however, is metal as the machines make use of magnets to scan your body. You have to declare any implants before undergoing the scan as no metal can be on you. I had braces as a teenager and when they were removed, I had 2 metal wires placed behind my teeth & of course, they interfered with the scan imagery.

MRI machines are also incredibly noisy and you really have to try and stay calm. You can’t move but it honestly sounds like a plane landing in your ears. Even through the ear plugs!

The tumor was placed just over the midway point of my tongue. Should it have been much farther across the line, there may have been issues. It also helped to confirm that there was no visible malignant cells in my brain or neck.

Sonar

Dr also requested a sonar to confirm if there was any noticeable issues with the lymph nodes prior to surgery. Similar to what you see on TV with pregnancy sonars, Dr placed some gel on my neck and went to work examining the images reflected on the screen.

Results showed that while I had some strangely shaped lymph nodes (honestly, are we even surprised anymore by the oddities of my body), all looked clear which helped the surgeon confirm that only the lymph nodes closest to my tumor could be removed for testing.

Swallow Scan Radiology

2 weeks post-surgery I met my speech therapist whose task it was to study my swallowing to clear me to drink liquids again without aspirating (liquid entering your lungs while swallowing). We met at the radiology department where they explained that when you swallow your epiglottis closes to ensure the food or liquid goes down your esophagus to your stomach.

They test this by placing you in front of an x-ray machine and providing you water with a milky, chalk-textured powder mixed in. They then record as you swallow this liquid and play it back to see where the liquid travelled to ensure nothing entered the lungs.

I cleared that test with flying colours and was approved to drink clear liquids. Tea & coffee with no milk, ice tea and apple juice. We met again a week later and practiced chewing and swallowing for the first time. Starting with avo and banana before being approved to start trying other foods.

Chemotherapy:

Chemo Port Implant

I was advised that the type of chemo I would need required that I have a port implanted. The treatment runs over a constant 96-hours which cannot be done through a traditional IV drip. It also does wonders to protect your veins from endless needles.

The procedure itself is a simple day clinic procedure where you are placed under sedation and the port is implanted. It is placed under the right collar bone and connected to the blood supply running from your arm to your heart. Before the port can be used, about 2 weeks of healing is needed.

Both the port and peg tube will need to be surgically removed once I am cleared by the doctors.

Chemo

Between mid-June to mid-August 2023, I was administered with 3 rounds of 96-hour infusion drip chemo therapy.

In terms of receiving the treatment, it is a fairly simple trip to the oncology center. Your port is connected and you are administered a kidney flush to ensure your system is working okay. You are also given vitamins and minerals and a bag of chemo medication. Once that has run through and you have met with the oncologist for a checkup, the chemo bag is connected and you can go home.

Below I have tried to summarize the effects I experienced:

• Metallic taste in mouth
• Nausea
• Food aversion (especially to dairy)
• Lip & mouth sores (post-treatment)
• Chemo acne (round 1 specific)
• Swollen throat
• Fatigue
• Insomnia (post-treatment)
• Headaches
• Ringing ears
• Cold shivers
• Dry hands (round 2 specific)
• Hair loss

It took approximately 10 days to recover from each round of chemo. It was primarily battling fatigue and insomnia, mouth sores and the difficulty in swallowing which leads to weight loss from a battle to swallow. Rest assured, as soon as those sores cleared I made it a mission of mine to eat as much as possible to pick up enough weight to have my next round of chemo. If your vitals are not correct your chemo treatment can be postponed. This happened to me once during treatment in which my blood cell count was too low. Chemo attacks your body’s ability to produce these blood cells as treatment attacks your bone marrow.

To counteract this, I was given 5 days worth of self-administered injections to boost my bones production of the required blood cells before treatment could resume. These injections cause body ache as it forces your bones to work harder than normal to produce more blood cells. I was given these again after my 3rd round as a safety net to ensure my body had enough cells to fight any potential infection.

Radiation:

To prepare for radiation, you are required to go into the treatment center for a planning scan. In cases of head & neck cancers, you will also have a mask molded. The team were excellent in providing information booklets on how radiation works and the side effects to expect to help in preparing for the treatment. The planning and authorization takes approximately 2-3 weeks to arrange. Radiation treatment consisted of 30 total treatments administered every week day for 6 weeks. The treatment itself is a painless process in which you lay on the ‘bed’ of the machine. The radiation therapists then strap you into the machine with the mask being strapped to the bed as shown above. This is done to ensure that you are placed in the exact same position everyday. Once strapped, you lay as still as possible while the machine administers the treatment over a 10-15 minute period.

The purpose of doing radiation after surgery is to increase your chances of ensuring that all cancer cells in the area of your diagnosis are killed off. It is an additional layer of protection to decrease the likelihood of reoccurrence. Oral cancer is one of the most aggressive cancers. It is important to take all necessary precautions to ensure the cancer has been removed. While my surgeons are confident they removed all the cancer in theatre, the doctors have told me before that it only takes one cell to remain to cause a problem. As such, it is safer to undergo the treatment.

The sneaky thing about radiation is that it works on a bit of a delayed reaction. You feel little to no effects in the first few weeks but when they start to kick in, boy do they kick in.

The team advise from the get-go that you have to do the following:

• take lukewarm showers to decrease skin irritation
• no hot or cold packs on the treatment area
• use only Dove soap and aqueous cream for your body
• stay out of the sun
• no sunscreen
• good oral hygiene is a top priority

The side effects I experienced were as follows:

• I started with decreased energy from about week 2. As time progressed I found myself sleeping 12-14 hours a day.
• I experienced increased mucus buildup in week 2 & 3 which I was told is completely normal. The best thing to take is some ACC200 to help clear this up.
• My taste started to decrease around week 3 and by week 4, I could no longer taste anything. This can take up to 3 months to return.
• After week 4, the mouth sores and pain in my throat prevented me from eating anything by mouth. Doctor advised that it is important to keep my swallowing functioning and to try and drink at least 1 drink a day by mouth. The sores and pain are quite extreme to the extent that water burns when drinking it. I relied on milk drinks like Steri-Stumpi and tea with milk as they were easiest to swallow.
• Doctor did prescribe a mouth rinse to assist in easing my swallowing from week 3. This did help for about a week before I suffered an allergic reaction to one of the ingredients. I was put on a course of cortisone to manage the swelling and rash I got.
• My skin around my neck started to react after week 5 with a distinct redness on my neck. I was lucky my skin reacted fairly well but that my mouth took the brunt of the treatment.
• From the beginning of week 4, doctor placed me on morphine drops to help manage the pain which was the best thing to have done. Once on the drops, it became a lot more manageable.

Doctors warned that it will take 2-3 weeks to start feeling better.

Here are the post-treatment side effects:

It took about a week for the pain in my throat to subside which has allowed me to swallow far easier. My consumption remained basic for the first 2 weeks post-treatment. The mouth sores being large and sensitive to anything with flavouring. My energy levels were improved within a week of treatment ending & I was off pain medication within 10 days. I started to have increased mucus and phlegm buildup about a week after treatment ended. This resulted in a continued use of ACC200 & the nebulizer to release this buildup and increase comfort. The skin around my neck also started peeling after treatment ended.

Radiation is not for the faint of heart, it is so incredibly uncomfortable and pain in the area you receive treatment. It can disrupt your sleep, your routine and leave you feeling very weak. The benefit to it is that it is often the last hurdle in your treatment and it has an end date. There is something empowering about being able to come home from treatment and to tick off the day on the calendar as done & knowing that it will end. For me, knowing that it will be the last time I will feel this unwell was a huge motivator for me to keep smiling and push through.

Port & Peg Tube Removal

*A reminder that the above is based on my personal experience and is not necessarily applicable to all head and neck cancer patients nor is it based on any scientific finding.