I am now two (2) months post treatment. Let me tell you at the start that I am almost pain free (I would say that I am 99.5% pain free. Let me tell you about the journey and we will discuss the remaining pain at the end.
I had experienced a fantastic stay at the Unit and it was so uplifting. I was feeling sensational. I had one rough night of pain on the way back, but put it down to eating something that my mouth and throat didn't like. Upon returning from a break up home in Queensland, I came back with so much positivity and blokey testosterone that now upon reflection, Lisa and the girls probably thought I was a bit of a dickhead. I was so keen to return to "normal". TOO KEEN!!! The pain in my mouth had not gone away. I was starting too stress on this one - why had it all gone and why was it now coming back.
Obviously, the anxiety starts to rise - is something wrong? is the cancer fighting back? But above all that was the fact that this pain was a bitch. Worse than anything I had experienced so far. I could not move my jaw and anything that went in my mouth would burn so much that I could not stem the tears of pain.
We arranged an urgent visit to the Clinic at Peter Mac and to cut a long story short, it was diagnosed as an infection in the treatment site. Pheeeewww, what a relief. Not Cancer, just bloody bacteria.
I was now on some strong antibiotics and only had 5 days of pain to put up with and it would all be okay......or so everyone thought.
Now, it is here that I must jump ahead in events and look back, because I am sure that there was an element of mind over matter occurred here. Two days later and the pain was starting to recede which was excellent! Day three and four came and went and the pain was not going, NOT AT ALL! In fact it was getting worse, much worse. I have to wonder whether some of the pain was attributable to the mind games going on. Was my anxiety making it feel worse, did the knowledge that it was not cancer again take away some "phantom pain". Why did it go for a short while and then come back with a vengeance??? I suppose I will never know.
I arranged another clinic appointment and had one of those amazing camera down the nose experiences. People think I am so weird because I really do find them to be very enjoyable. I love that feeling at the back of my nose. Anyway, they (Albert and another consulting doctor) could not see anything that looked unusual or of any concern, so they took a swab (THE PAIN, THE PAIN) simply shoving a cotton swab into the most painful areas of my mouth as guided by me.
The swab results took four days, four of the most uncomfortable days I have experienced. I simply refused to eat, or drink. It was way too painful. I actually lost 4.8kg between first getting the pain back and the final diagnosis.
SO WHAT WAS IT YOU ASK ------- HERPES SIMPLEX - a bloody outbreak of cold sores. I have never had a cold sore in over 25 years and now my gob ends up full of them. They are all over the treatment site and right down the unseen bit of my tongue but because they are not exposed to air they do not scab up and show.
Yet another strong batch of anti-viral tablets and thankfully within 5 days I really do start to see a huge reduction in pain. I can actually start to eat and drink (still needing to play a bit of Russian Roulette with what will burn/hurt and what won't) again and am so incredibly relieved that this dark moment is over.
That was 10 days ago and now I am eating well (still avoiding sharp / crispy foods that scrape against the recovering throat tissue) and have climbed back up the a nice post treatment weight that I am hoping to maintain as I rebuild my overall fitness.
I started back at work last week. I was determined to go back full time. I was bored of sitting at home in a three bedroom unit with no man cave and no garden. On top of that the weather wash shithouse, Cold rainy days where you are stuck inside, are not good for a bored brain. You can only watch so much shit TV. I NEEDED to get back to work.
I lasted a full day last Monday, an extra long day (9 1/2 hours) on Tuesday and a full day on Wednesday but just could not make it all the way through Thursday and decided to work from home on Friday. The fatigue is waning, that I am certain about, but for the last 5 months I have been able to lay down on the bed or the lounge for a few minutes when it gets tiring.... you can't do that at work in an office full of people, so I will need to work out how to manage it.
My current pain is just like having an ulcer on the side of my tongue. Not all that bad and only stings a bit when you catch it with your teeth or stretch your tongue. For me, yawning is the worst because it stretches everything in your neck and the pain is sharp but short, and the afterpain is remarkably soothing. It feels like my saliva glands excrete something that soothes the pain. It feels like it is thicker and a bit stringy, but it certainly has a taste that can't be explained and it does assist with the pain.
I took some advice from my darling angel Lisa, and started to chew gum. When you have chewed everything on one side of your mouth for 6 months it is strange to eat on the other side of the mouth. The gum has done a fantastic job, it is one of those "enjoyable" pain sessions where it hurts while you do it, but feels awesome when you stop and for the first few hours I could feel it re-aligning my jaw.
So like I said I am now 99.5% pain free. I have been off any pain relief at all for over two weeks and have started to really expand what I can eat and drink which is extremely enjoyable. The things we take for granted taste exquisite when you have not been able to eat them for over 6 months.
August 15 is just around the corner. I head in for my PET Scan and hopefully find out on August 16 that I am cancer free for the time being. I am a realist and will never consider myself to be totally free but I have the peace of mind in knowing that I have a four year safety net so I will remain unperturbed about the chances of a re-occurrence and will get on with my wonderful life with my sensational wife, my awesome kids, my amazing family, and my fantastic friends.
Keep your fingers crossed for me and watch for the next update.....
All the best
