Greg's Journey

Hello everyone!! Yes, I am still alive :) The last three weeks have been challenging to say the least. On Sunday Jan 29th, Claire and I decided that it was time for a nasal-gastric tube as I had moved to a fully liquid diet the previous week, and was now having problems keeping my nutrition levels up. In the previous 48 hours, I had lost 2 Kg, and had eaten and drank nothing. The doctors recommended we come and get the tube inserted, so in we came. Oh wow, we had no idea that our lives were about to get turned upside down! First off, an emergency department doctor put 30mg of morphine into me, then inserted a nasal-gastric tube. I was then wheeled across to the public wards of St. Vincent's Public as we were told there were no empty beds in St Vincent's Private Hospital. As I'd had a (small) procedure performed on me, I was told they needed to keep me in for observation after the tube was checked by x-ray for collect placement etc. I was then wheeled up to Ward 6W in a morp...

This morning I had my weekly review with my oncologist, June, to see how everything is going. Traffic was shocking for some reason this morning; today took an hour to get in, yesterday took 30 minutes. No obvious accidents but obviously a lot of people who had forgotten how to drive over their summer break. After a quick tanning session (#27) it was time to catchup with June. We discussed what was going on with my weight, eating habits, an inspection of my throat both internally and externally, and a discussion about pain management. In her opinion, I'm doing very well, better than she expected, and now need to really change my diet to allow me to keep swallowing, and keep nutrition levels up. My morphine dosage has now doubled so hopefully that will know a bit more of the pain off. The most important thing here is keeping my nutrition levels up to fuel my body. If I don't do that, my muscle mass (hence weight) will drop, and a requirement to transition to a feeding tube. This ...

Second last week of treatment! Yay! Welcome to Week 6. Only 10 more radiotherapy and one more chemotherapy sessions to go. I feel like the end is in sight a little now, even though the symptoms are starting to ramp up a bit. The pain in my throat caused by the radiotherapy is really starting to kick in now and I am unable to eat without the aid of my newest medication, Lidocaine. This is in a pink solution that I need to gargle before eating. It totally numbs my mouth and throat so I can swallow food. So now, food is just something to fuel my body. I can't feel it, taste it, or smell it. On top of that, it's Panadol 4 times a day, interspersed with a morphine solution in a syringe to numb the pain. On the plus side, I met with my dietician this morning who has instructed me to "go for gold" with ice cream, custard, yoghurt, creme caramel, and anything else between meals. It's a pity I can't taste anything! This is to keep my weight up. Last week it fell off a ...

Today is my last bit of work a little while. Sadly, my voice can't keep up with what I want to do so it's time to pull the pin and focus on just me for a month or so. Datacom have been fantastic in looking after me and I'm so lucky to be working for a company that really values it's people. I'll miss the daily interactions with my teams, the group I work withing (PSG Product Solutions Group) and the greater Datacom. It's a fantastic team of people doing amazing work, and I've been humbled by the messages of support from people within the company, right from Alexandra, our Managing Director, my director, Ross, and everyone else. So lucky to be there. Anyway, the email auto-responder is now on, and I am weirdly disconnected. I've never been away from a workplace for the anticipated duration of my treatment and recovery so it feels a bit surreal. Lonely, even. I already know I'm going to miss everyone.  See you all again soon everyone!

Tuesday. Another radiotherapy session, and then, for a change, I need to have my mask remodelled, and a new CT scan done of the tumors. Due to the (great!) shrinkage, a new CT scan needs to be done to allow June and the physics department to recalibrate my treatment for maximum effect. I am told this is quite normal for Week 5 patients so I lie back, get wheeled into the doughnut machine and listen to it hum as it whirs around me at high speed. I also think about how lucky I am to live in a country like Australia where I can get great quality treatment. I ponder on this and think about someone else in the world with the same condition as me who is not in such a prosperous country. It's a sobering thought. The mask that keeps me immobile during radiotherapy is tight-fitting. It needs to be so that I don't move during treatment. Due to the major shrinkage in my neck, the mask has quite a bit of wiggle-room which needs to be fixed. This is a high-tech procedure and no expense is s...

Welcome to Week 5 of treatment! I am soooo glad to see the back of Week 4, a chemotherapy week. The drug, Cisplatin, certainly smashed me for six for a week. This morning, I woke up and it's like a fog has been lifted. I started Week 4 at 78Kg and I start Week 5 at 75Kg. Today starts with a radiotherapy session in the morning, and then a catchup with June. So the good news is that the tumors are shrinking quite nicely. June inspects my mouth and throat, feels around my neck, makes me jump on the scales and her prognosis is that I am doing very well, except she is concerned about my weight loss. I keep track of my weight each day, and you can see in the graph below my weight starts falling off a cliff a day or two after Chemotherapy at the start of Week 4. This is caused by a few factors. As well as keeping my body running, I require additional energy for all the work my body is doing to fight the cancer. My body normally uses about 8,000Kj but they estimate it is now needing in exc...

We've now hit the half-way point in my treatment, not the journey, but just the treatment. It's been pleasing to see some before and now images of the tumors to see how much difference has been achieved so far. Start of radiotherapy (19th December 2022) Notice the tumors in the red and green areas. Solid grey and large.  Halfway through radiotherapy (19 of 35 sessions completed 12th Jan 2023) The red areas are greatly reduced (primary tumor area) and the "greyness" in the green areas is also visibly reduced (density). And a little video scrolling through

Ahhh, Chemotherapy. This week brings good news and bad news. The bad news it's a chemotherapy week, and the good news is that on Wednesday I celebrate half-way in my treatment journey!  It's also an exciting week as my eldest daughter Elizabeth and husband Andrew moved into their house in Box Hill North, and our son Tim has also moved in to get a taste to living out of home. I'm really excited for all of them. Elizabeth and Andrew preparing for the arrival of their baby (and my first grandchild!) in March, and Tim for taking on the responsibility of adulthood and exploring the world outside the home he grew up in. So, chemotherapy was at 11:00am this morning with a quick check-in with Jane, a St. Vincent's Cancer Centre doctor. She reviewed my bloods (I donated 12ml to science last Friday) and said I was PERFECT. We have a little family joke that Claire's Mum, Di, called me Mr. Perfect one day. As you'd imagine, I don't let gold like that ever be forgotten. ...

One of the side-effects of my treatment, is the gradual and eventual loss of all my hair. I mean ALL. Body hair, head, bear, eyebrows, eyelashes; the works. Over the last 24 hours, I've notice that even my beard brushing against my shirt is enough to dislodge it. Itching my chin leads to hair loss. So, this photo is Greg at "peak hair" :) It's now starting to come out in clumps, so lucky I it doesn't bother me :)   

At my weekly meeting with my radiation oncologist, June, on Tuesday, she was on the lookout for tumor size in my neck and what they were up to. I have been able to noticeably see and feel the tumors reducing in size, and to quote her "tumor is shrinking, Greg's not shrinking, this is good". My weight is still holding stead (omg I am eating like a horse!) and the tumors are indeed shrinking; great news! This week is also when June walked through my upcoming chemotherapy and pain medication to allow me to continue eating as long as possible. I've been prescribed a solution to gargle, swish and swallow before eating to totally numb my throat for 15 minutes or so. This is to enable me to get food into me "normally" for as long as possible. The other drug is a type of liquid morphine derivative that I squirt into my mouth, swish around, then swallow. I'm to use this when panadol will no longer keep the pain at bay. Other than this, it's radiation therapy ...

  So, it's time to embrace Week 3 of treatment! I start the week at 78Kg, despite all the food and crap I have been eating over the last 3 weeks. After one and a half years of eating healthily it seems strange to be eating anything and everything that I come across. I have been encouraged to eat anything I can, and maintain my weight. If only I could taste it all! Sadly, I still have no taste or sense of smell. It's weird operating with two of the five senses totally missing in action. The photo today is from my last radiotherapy session on Friday 30th December. I think I have mentioned in a previous post that before the radiotherapy, a quick CT scan is done for positioning and calibration purposes, and this is mine. In three axis it shows the two tumors, which are identified in the red line. This is where the major radiotherapy is occurring. Out from that is the light-blue line. This is where medium dosage is being delivered, and the orange, a low dose. So, now you can see the...