Lessons, Love, Resilience - My Journey with Cancer!

This is a bit of a long one, but it’s from the heart and real. If you’ve ever faced something tough — or supported someone who has — I hope my journey, from this year helps.

As some of you may have noticed I have been a little quieter on the social media posts of late.
And that’s because I have had to take some time to deal with some health issues.

Late last year, I was having some “weird sensations” in my left jaw – just once or twice a week for 5 mins, at night after dinner. It gradually became more regular and a little longer. I initially thought it was arthritis from an old injury that caused a “clicky” jaw.

Then in January this year, I found a little inflamed node under my left jaw line. By this time, the weird sensation was going down the jaw towards the chin. A wave or realization came over me – “oh shit – I have an infection in my teeth / jawline.” That makes much better sense.

As I was just about to head to India to work for 2 weeks, I thought I’ll wait til I get back.

Please note – in the back of my head I was still thinking “what if is something worse”.
NO - I’ll be right.

By the time I got back from India, it had doubled or tripled in size.
At that time I started to get concerned. All the signs and symptoms were getting worse.

So, I told Kim about it…who then strongly quizzed me about how come I didn’t mention it before…
“I just thought it was nothing…” was my answer.

The GP and I agreed it wasn’t normal, so an MRI and Ultrasound was conducted.

You Beauty, All Clear… (we thought we dodged a bullet)

…but – it did say on the report - Go and get a CT scan with contrast.

Which I did. The GP sent me the report immediately. It was 3pm on a Tuesday…and I was at work.

I was so relaxed about it, I didn’t even check it. It wasn’t til about 8.00pm that night, after dinner that I mentioned to Kim that we got the report back.

“What did it say?” 

“I don’t know – never checked it.”

When I did, a bit of shock set in.

“Squamous Cell Carcinoma in the oropharyngeal (Tonsil) region, into the tongue and sub mandibular (jaw) node.”

Didn’t dodge it after all.

CANCER

Not so Fun Fact:
“Squamous Cell carcinoma (SCC) is a type of cancer originating from squamous cells found in the skin's outer layer, lining the mouth, and other body cavities. Caused primarily by UV radiation from sun exposure, it can appear as a red, scaly patch or firm lump that does not heal. Treatment, typically surgical removal, is highly effective when SCC is detected and treated early, though advanced cases can become dangerous and spread to other body parts.”

As it turns out mine was activated by the Human Papilloma Virus. Go figure…

That was the start of a 6 month journey.
Tests, blood tests, scans…

We went and saw and ENT (ears, nose, throat) specialist, then to a radiation oncologist and chemo oncologist. All 3 said, if you are going to get one, then this is the one to get, because the recover rate is 98%.

When we went to the ENT, a camera was put up the nose and then we saw the cancer. It was a large lump, taking up about a third of the area of my throat. And it looked like a bright pink chewed up piece of hubba bubba bubble gum after you blew a bubble – with lots of little bubbles in it.

PS – Though it was so large, I never felt anything when swallowing, at least not until about 6 weeks later, 2 weeks before treatment.

I went onto a very clean diet (it was pretty clean anyway), so wasn’t that hard. No alcohol etc.
We had to wait 8 weeks before treatment started…which can cause a bit of a brain f#*k.

But we did contact someone who had an “alternative” treatment protocol, which we then tried for 8 weeks. It felt good to be proactive — sitting around waiting would’ve done my head in. But because it was a skin cancer, that protocol had little effect..

My attitude was, “F#*k this…I will work through it all and it wont beat me!”
That meant the cancer AND the treatment. (Ahhh…I can look back and laugh now).

So, 8 weeks after diagnosis I started treatment.
7 weeks of it.
3 Chemo treatments – Weeks 1, 4 & 7.
35 Radiation Treatments – Every weekday for 7 weeks.

They did warn me about possible side effects like…
Taste buds damaged – so changes in (or lack of) taste…
Salivary glands damaged – so dry mouth…
Hearing loss…
Low energy (due to the radiation)…

In my head… “I’ll be fine. It wont beat me.”
(Again…and can look back and giggle a little.)

First chemo treatment – woke up the next day with tinnitus and some hearing loss.
Second chemo treatment – the same.

Not to mention sleeping on the couch for 3 nights, and using a different toilet so I didn’t pass the toxins into my body onto Kim.

After 3 weeks I dropped back to working half days…just to help me recover.

I did get a bad case of Thrush in the mouth and throat so eating did get difficult for a short period, but the antibiotics helped immediately.

I was going pretty well, then just before I started week 7 (which was a Tuesday to start of the rotation), I woke with no voice and the pain had started to get worse. Eating was difficult and I was starting to lose weight.

I had my radiation on Monday and Tuesday, and Chemo on the Tuesday before seeing the oncologist who advised us that I was getting admitted into hospital the next afternoon.

Kim and I both started crying immediately as it wasn’t in “our treatment plan”. But we realized there was no other way around it. Thinking it was going to be just for a week or two, turned into nearly 4 weeks.

It started rough, having to put a tube up the nose to feed. The first two times were unsuccessful, with the 2^nd time having the tube end up in my lung. They decided to do it the next day with a scan so they could watch it, the 3^rd time – into the lung again, before changing the size of the tube – and it landed in the stomach that time.

For the next 4 weeks, I was taking Panadol, had a Fentanyl patch on which was replaced every 3 days, and having morphine shots every 2-5 hours. At one stage there, especially early on, I questioned numerous people about becoming a drug addict because of the regularity. They did put my mind at ease, but it was a challenge.

I had a blood test every day, had a couple of small infections, and then a blood transfusion. Then the feeding tube broke about 2.5 weeks in. The dietician wanted to put another one in. I refused to have another one and said I “Would Eat With PAIN”.

They gave me a pink gel, which I watered down, then swished around my mouth, gargled, and swallowed a small bit of it, which NUMBED the area for 15-20 mins so I could eat.

I ate jelly, custard, mashed potato, and anything else that was soft and easy to swallow.

I forgot to mention, I had my last 4 radiation treatments in hospital.
Now when you finish your treatment, everyone gets super excited – yahhhhh, you’ve finished.
BUT – This is when you are at your lowest. And then you get lower.

You see, the radiation is simply burning out the bad bits.
It is a burn on burn on burn 35 times. And though you may not feel it early, the cumulative effect is devastating. (It’s like getting badly sunburnt 35 days in a row).

In fact, once you finish your treatment, the burns continue to GET WORSE for 2 more weeks.
So, I was definitely F#*ked by that stage.

And when the throat and mouth is that badly damaged, apart from the burns, there were also ulcers…it produces phlegm to protect itself. As a result, I was “releasing” (nice way of saying “harking it up”), lots of massive loads every day. And I still am releasing it every day, though not as much or as often. Just a side note, when you eat, often food can caught in the phlegm – which makes it even more unpleasant.

Anyway, back to eating. By this stage the taste buds had definitely changed. I thought a soft chocolate mousse would be great (being a chocoholic before the treatment), but it tasted terrible and slightly burned the mouth and throat.

I couldn’t eat anything slightly dry as the sharpness of the food would be too painful (even with water), and I now couldn’t produce the saliva and the enzymes within to break the food down and allow me to swallow comfortably. I needed to take sips of water regularly to moisten the mouth.

On top of all that, I wasn’t really hungry. I was trying to force feed myself, because it I lost weight, then the tube would go back in and I wouldn’t be going home.

I had lost about 14-15kg and the energy was shot. I never slept well at night, though Kim said I did sleep well during the day. I never thought I did.

There was a lot of gagging, throwing up, phlegm being produced and TV watching when I was in there. When Kim was there, everything seemed a little easier.

Most of the time I was pretty positive, but by the end of the 4 weeks, I was burnt out. I felt as if I wasn’t getting better. I had NO energy. I broke down a couple of times and went into a negative mindset. I expressed this to Kim on one occasion and she said exactly what I needed to hear. Now I don’t recall the exact words, but it was something like – “Pull your head in. Where’s this negativity coming from. You just have to suck it up and keep moving forward.”

Like I said – not exactly those words – but exactly what I needed to hear.

I even dragged one of the nurses in 2-3 days later, asking the same question and he re-enforced how great I had been and how far I had come. Within 2 days I got the all clear to come home…but I had to keep putting on weight.

Going home was a great relief.  But the energy…
When they said it will effect your energy levels I though, “Yeah, I’ll be a bit tired, but I’ll be fine and work through it.” (Again I can laugh now.)

This is how low the energy got. A few days after we got home, I was walking on the verandah and Kim said, “Stand up straight. You look like an old man.”

I looked at my reflection in the window and saw this hunched old man shuffling along. Oh Shit. So, I stood up straight. Took 4 steps…and went  - “Nah f#*k that. That’s to hard!”…and continued to slump and shuffle.

I never even had the energy to stand straight.

Kim kept a very close eye on me with my food, ensuring I was putting on weight…which I wasn’t.
I did tell her a white lie, stating that I was maintain 84kg, otherwise she was all over me. When we went to the oncologist and said I was 82.5kg…let’s just say there was a reaction. I reassured her that it had been stable at that weight for 3 weeks. In fact…I am still the same.

Since I have been home, I have slowly improved, still challenged by taste (slowly improving), saliva (maybe slowly improving – but maybe more just wishful thinking), hearing (wont return) and then a new one about 6-7 weeks ago, nerve damage to the feet and fingertips due to the toxicity of the chemo. It can kick in anywhere up to 1-2 years post treatment. We thought we dodged that bullet…but no.

And then there’s the energy. Bit by bit it has improved. I can push myself a little too much at times, and then have to recover – totally do nothing for a day. And it is not just the physical energy. I haven’t had the mental energy to do anything either.

Last Monday, between 3-4 months since my last treatment, I had a PET scan. What I started to do at that point was preparing myself for negative news (just in case) – which meant doing it all over again.   We saw my radiation oncologist on Thursday morning. He saw us in the hall before our appointment (he had to see another patient first), gave us a big smile and double Fonzies (both thumbs up).

Kim and I looked at each other and both started crying. The nurse we were about to see walked out and with a bit of fear, asked what happed – “These are happy tears.”

We got the all clear, and I got to rang the bell.

Afterwards, we didn’t want to go back to work, but go celebrate, but had 2 more patients before lunch, and a fully booked arvo. (I was working 2 half days, and just started a full day on the Thursday the previous week).

What were we thinking. If it was negative news – there was NO WAY I was going back to work, so why wouldn’t we go out and celebrate.

Neither of us realized what a huge relief it was. I think I cried 5 times within the hour.

Some things I am grateful for:

1. I’m glad it was me…rather than Kim, Mum or Dad, my sister, inlaws and nieces and nephews, because I have the mental, emotional and physical resilience to get through it

2. Being in Australia and having the access to options and our medical services.

3. The amazing medical staff at Genesis in Mandurah and Murdoch Hospital. A special shout out to the nurses – who are nothing but angels in uniform. Full of caring, love, empathy, support, understanding and professionalism…oh my god, without them the journey would have been much tougher.

4. The staff and patients at Pinjarra Chiro. Our staff were amazing – covering for us and never had to think about or worry about what was happening there, and all their love and support. And the patients – for their support and understanding.

5. My “chosen family” – all my friends and mates, who sent messages, made phone calls, sent love and healing, visited etc, etc, etc. Thanks for your energy, wisdom, support and love…made the journey so much easier.

6. My family – who I love dearly. Sorry for putting you through all this. Their love and support, as with everything we do, was unwavering. Big Hugs.

7. The lessons…and there were many. Just how resilient the mind and body can be. Patience. Time to heal. Support from others. Ask for help. Listen to your body…closely. And the list goes on and on and on.

8. Kim…my home. My soft place to land. My rock when needed. I never thought I could love you more than I already did…but my love, respect, admiration, of you, your strength, compassion, resilience and heart grows more each day. I would never have got through this journey as smoothly as I did without you. Love you with all my heart…you are my home.

To all those people who are fighting cancer at the moment...I am sending all my love and healing - Keep fighting. 

To the families, carers, loved ones, a big hug and thank you for being there...but remember to take some time for yourself occasionally. 

Remember…
Never give up.
Never take a backward step.
It’s ok to have a bad day!