Greg's Journey

Finally! I've managed to do three meals in a day! First time since early January. We're not talking about anything exciting here, but a boiled egg and yoghurt for breakfast, soup and bread for lunch, then some ravioli for dinner. All very soft food and not very large serves. On top of this, I'm still having three of the Ensure nutrition drinks a day (which I hate). It's amazing how much we take the ability to swallow for granted. According to my dietician and speech pathologist, there are over 30 muscles that have to work flawlessly to be able to swallow, and mine are way out of practice, and there is still a healing wound in my throat, and on my neck from the radiation. I'm so happy to be eating food again, albeit in soft and small quantities. I'm still not putting on any weight and continue to hover around the 65kg mark. A little bit of taste and smell is starting to return, some of it accurate, but most often not. I am very optimistic that it's coming bac...

It was great to visit the office again this week. There were so many happy faces with lots of hugs, and I must admit, a happy tear or two. As I had lost so much weight, none of my clothes fit; not even close! Claire and I did a quick shop for new jeans, shirts and even jackets as my old clothes not only looked ridiculous, some of them couldn't even stay on (jeans). My first day back in the office coincided with Easter morning tea. Our office coordinator, Nicole, had outdone herself with Easter decorations and chocolate eggs and hot cross buns to feed an army. It was lovely to be surrounded by my Datacom family again. I had no idea how much a trip to the office would tire me out. I was exhausted by 3pm and was in bed by 8pm. It was physically exhausting but so rewarding to see so many people who welcomed me back with smiles and big hugs. I want to try and spend two days a week in the office again but will just have to pace myself. Speaking of weight, I'm pretty much hovering at ...

Today is my first day in 2 months without opioids. To manage pain over the last two and a bit months, I've had ordine (liquid morphine, taken orally), morphine, via injection, and fentanyl, via a skin patch. At the worst moments, all three were in parallel use which blows my mind now. This is on top of anti-nausea tablets, anti-reflux tablets, anti-blood clotting tablets and others that I've been given. It will probably take a few days to get out of my system, but this is another milestone moment in my recovery. I am still very tired and spend a lot of time sleeping, or resting and dozing, during the day. I am so lethargic it's hard to even comprehend. I've got to listen to my body though as it's gone through a lot and I can't rush it. My throat is still sore, and I can't eat solid food yet. I'm on the Ensure TwoCal drinks (4 per day) at the moment for my nutrition needs. On top of this, I still have next to no sense of taste or smell still but some thin...

Hi everyone! It's now nearly two weeks since leaving hospital, and I am starting to feel partly human. Sure, the throat is still very sore, and I'm still on fentanyl pain medication, but life is getting better. The aftereffects of pneumonia are still there; my chest still rattles, and every now and again there is a large amount of mucous that needs to be coughed up, with lots of spluttering. I have my after-treatment review with Professor Corry on the 12th March so I'm looking forward to that. The last time I saw her was during a drug-induced fog when I was getting my second nasal feeding tube inserted. The biggest news however, has been the safe arrival of my first grandchild! Yes, I am now a grandfather. I'm not sure if I'm ready to be called that, as I certainly don't feel like a grandfather, but, there you have it: I am. His name is Oliver, and he arrived in the evening on the 1st March. He's absolutely beautiful. Claire and I were lucky enough to get to...

After nearly 4 weeks in hospital, it's time to go home! As one nurse quipped to me, "Hospital is where sick people go. Home is where sick people go to get better".  To those who visited, or helped Claire keep everything running at home while she juggled starting a new job and looking after pets and kids; thank you. It's so good to be home amongst familiar surroundings. As an added bonus, Formula 1 testing was on last night so it was great to put my feet up and watch F1 on the big screen :)

Week 9 and 10 still finds me in hospital, surprisingly! I came in for a nasal feeding tube, and if you;ve been keeping track, ended up fighting pneumonia. Joy! My beautiful wife managed to get me extracted from the public system, and across to St. Vincent's Private Hospital. We are both still unsure how I ended up in the public system, but apparently due to me coming in via the emergency department on a Sunday, that was enough to tip me in. Thank you Claire for battling for a week to get me transferred. The transfer involved me and my belongings being placed in a wheelchair and moved through the underground tunnels that are everywhere between all the St Vincent Hospitals, public and private, and the Eye and Ear hospital until I came across this rather innocuous door. What a difference it was! At last I was in my own room, my own doctors, and fantastic care. I think I said it in the last post.... make sure you have private health insurance! Week 9 was being treated heavily for pneum...

Week 8 since treatment started, and the first week with no treatment, is a week in my life I'd really rather forget. It turns out I developed Aspirated Pneumonia and Week 8 I was running a fever over 40 degrees, while dealing with the after effects of chemotherapy AND radiotherapy. In addition, I was on morphine injections and cocaine mouthwash for pain, and was sweating and hallucinating, whilst in a 4-bed room in a public hospital ward. The burns on my neck from radiotherapy were at there peak, so imagine what the burns were like on the inside of my neck! In addition, chemotherapy was smashing me for six. Seriously, I cannot imagine a worse week ever in my life. Claire battled with a SNAFU to get me transferred across to St. Vincent's Private Hospital and by Thursday evening I was transferred across to the private hospital. If you are reading this and don't have private health insurance; get it.  I don't have much of a recollection of this week other than frightening ...

Week 7 started ok, although the chemotherapy scheduled for Monday didn't go ahead, and was changed to 6am Tuesday morning. Radiotherapy continued unabated Monday through Friday with GenesisCare. Immediate family kept me company throughout the week, and the burns on my neck really started to become an issue. The sunning salon had obviously gone into "out of control" mode, but I reflected that it must have been way worse for the cancer cells, so therefore, I could put up with it. At the end of Week 7, my last radiotherapy session on Friday 3rd Feb was my last day of treatment. The positioning CT scan was showing a totally different next to the one I saw two months ago. There was a problem building though. Pneumonia.

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...

A side-story to dealing with cancer, is dealing with Covid. If I catch Covid, the treatment doesn't stop now that it has started. This means that as well as my boosters being up to date, I've had to take a new drug, Evusheld, that is best described as a "Covid condom". This is a very new drug and is only available to a very small number of patients, so I'm feeling super-exclusive. This drug prevents the Covid virus entering the body in the first place. So, this is great news! Until I find out its two mega-injections in the rear!  There are two injections (different drugs) delivered at the same time; one in each cheek so I can feel pain evenly. St Vincent's had exhausted all their stocks of the drug but hunted around and found a chemist in Knox that had the drug and organised for me to have it on Thursday 29th December, in the evening. After confirming that all the correct paperwork had been exchanged during the day, Claire and I went down to the pharmacy and m...

Welcome to Week Two of treatment, or the lull before the storm.  This week is dealing with the after-effects of chemotherapy, and getting ready for the pain that I've been told is coming in Week Three from the radiotherapy. I'm very philosophical about it even now, as it's just a bridge to the the other side of this. Chemo. Wow. A cukoo-land where nothing tastes right, you feel like shit, and you're always tired and lethargic. There's nothing like savouring a hot roast chicken and gravy crusty roll. Biting into it, and, WTF? What is going on here? This looks delicious but what has happened to taste and smell? Gone. I never realised how important taste and smell are to food. If you don't have them, I do understand the "why bother eating" brigade. I had the chemotherapy treatment last Wednesday, and it's taken till today, the following Wednesday, to get over the hump of it. Probably the only thing that was able to cut through from a taste perspective...

Following the chemo, it was another radiotherapy session, with a follow up review with my specialist, June.  The radiotherapy went as normal and I'm getting to know the routine well. Then I met Claire in reception and we both went through to see June. I like June; she is direct, compassionate, no-nonsense and human. I'm also glad that she is a professor, is an expert in my cancer, and is keeping a close eye on me. I don't use Google for anthing related to my journey. I only listen to my team of medical experts, and June is at the top. Whatever she says, go's, in my opinion. Today was to go through my treatment plan, what they have found, and for some post-treatment, quality of life discussions. So, it is curable. Great, now we are wanting to discuss from the scans, what we have found, where we are treating, and the impact this will have longer-term.  Two tumours There are two tumours in my neck, both roughly the same size, just over 6cm in length, shaped like pears. One...

Today, I got introduced to the drug that's going to kill my cancer for the first time. Hello Chemotherapy, but more specifically, the drug, Cisplatin. I'm told this is the sledgehammer of chemotherapy, and I will have it in Weeks 1, 4 and 7 of my treatment. The day started off by leaving home at 7:15 in the morning to make sure we weren't late. I have worked out that there is a carefully choreographed movement of parts around me ranging from nurses, doctors, pharmacists, dieticians, speech pathologist, radiology technicians, oncology specialists, and medical practice administration staff. I do not want to be THAT guy that runs late and throws the entire system into chaos. We arrived just before 8am and scored an on-street park close to the hospital. No need for long-term parking today as Claire would not be allowed to stay with me. We waited for about 10 minutes in the cancer centre, and then a cheomo nurse, Jane, came and collected me, welcomed me to Session 1 (yay!) and s...

Day One of the treatments to beat cancer has finally arrived. Arriving at St Vincent's, I could only think about how beautiful a day it was, and perhaps this was a sign of how this is all going to go: Perfectly! A quick check in at GenesisCare, the private radiation therapy specialists at St Vincent's, handing over some more paperwork, and then it was time to sit and wait. Not really knowing what was going to happen made me a little bit anxious, but I didn't have long to sit and ponder, and before I could get too philosophical, Alex came and found me and walked me through the process. I'm sure she has done it hundreds of times, but I appreciated that she recognised I was a newbie. Maybe it was because every other patient I saw had radiation burns, no hair from chemotherapy, or both. Maybe the ones who still have beards are a standout as newbies. But, I digress. Alex walked me to the locker room where our masks are kept. I'm in locker 6. It feels weird opening locker...

So, Week 1 of my treatment has finally arrived, with all of my session times for the week now locked in. Friday involved a bit of running around to get a final (4th) Covid shot that the St Vincent's Cancer Centre wanted me to organise. Then, on the 30th December, they have organised for me to have Evusheld, a pre-exposure prophylaxis for Covid-19. The fun thing about this is that it requires two injections in the rear - woohooo! To everyone who have asked if they can help with meals, driving and more; a very big THANK YOU! The dinner and driving rosters are now open so fill yer boots! Dinner Roster Managed by Claire's sister, Merran. Link below, or contact Merran on 0423 952 668 Click here for dinner roster Driving Roster Managed by my brother, Troy. Link below, or contact Troy at troy@thefurlongs.com or on mobile 0401 523 789 to book a spot. Click here for driving roster This first week involves Radiotherapy everyday (Friday is 2 sessions 6 hours apart), and Wednesday also inc...

Another visit to St Vincent's today, and more blood donated to medical science :) First stop was a new building for me at St Vincent's, Building D, and the cancer centre there. This appointment was with an oncology doctor, to assess me for my chemotherapy "receipe" and to discuss my treatment. Once again, Claire was there to support me. After lots of questions and a quick medical checkup, it was determined that I will have three four-hour chemo sessions in Weeks 1, 4 and 7. I'm being given the biggest and baddest chemo drug they have, and we were walked through the treatment, side effects, and actions to take if things go off the rails. Quite daunting. If my temperature goes over 38 degrees, I am to come straight to emergency. Don't call, just come in. This is due to my immunity system being comprimised by the chemotherapy so any bug I may catch could be very serious for me. Once I start, anyone visiting the house will be asked to sanitise their hands and wear...