After 1st round of chemotherapy and immunotherapy completed with no further instances I have got checked out by my Surgeon and cleared to start round 2 albeit with the chemo reduced by 15-20%.

The feedback from the surgeon for the first round is positive. Looking through the scope the cancer seems to have reduced, which is fantastic and means I will continue on this treatment for longer in the goal to reduce the need to remove my voice box.

The 2nd round started on 26 October, the 1st week has still been hard but not as bad as the 1st round and am feeling pretty good at the moment. Over the next 4-5 days am isolating myself completely to reduce the chances of a repeat of sepsis as keen to get through this round with no issues.

3rd round due to start on 16th November.

So started my Chemo / Immunotherapy on 5th October and hit me much harder than I expected.  For the first week I was just feeling bad, numb fingers and toes and just felt like crap, then I started to feel better.

But on the 13th my lips started to swell, I started to get rashes and itch on my elbows and other places, then I started to feel better.

But on Sun 22nd late afternoon I started to feel unwell, an hour later I was shivering with a slight temperature.  Kirsten concerned rang the Oncologist and said if it got worse to go to emergency.   My temperature eased a bit and I thought all was good and then the shivering started again, I thought all would be good again,  Kirsten clearly disagreed with me and smartly started to prepare for a hospital trip even though I was insisting all was ok.    Then things started to snow dive and before I knew it Kirsten was rushing me to hospital while I was rocking like a baby in the passenger seat, on arrival they wheelchaired me from the car and started treating me for Sepsis.

The next 8 hours was pretty full on as they filled me with lots of fluids and drugs in both arms and carried out a number of tests and scans as they progressively worked to get my temperature down and my blood pressure up.   I am extremely thankful to the St Vincents emergency department that worked as a team to rapidly get onto the problem.  The skill, care and communication from everybody was excellent.

So that was Sunday and since then I have been in hospital recovering and been on a steady cause of intravenous Antibiotics.  I am feeling a lot better now and hope to be released in the coming days and looking forward to an uneventful few weeks.

Also the good news is that this should not overly affect the next round of Chemo, and have learnt the valuable lesson of going to the hospital when my wife tells me too 😊.

Great news today,  I am going to be able to-do the Chemo / Immunotherapy combination treatment starting on Thursday.

The Surgeon has determined that I have enough time to-do a round of treatment before having to proceed with Surgery.

Although this does not mean that the surgical removal of the larynx is off the cards, it means that if I react well to treatment it could be delayed or even avoided altogether.

Its weird to be excited to start Chemo but given what I was about to go through on Friday I am feeling like I have a chance!  I will now throw my full energy into trying to ensure this treatment has all the chances of working

Ok,  so some maybe good news today.

After several conversations and some positive biopsy results it looks like my Cancer maybe a good candidate to try a combination of Immunotherapy and Chemotherapy to try and reduce the cancer.  There not sure if it will work and it is not a definite route yet but its looking positive.

If I was to start this treatment it would start on Thursday 5 October, I won’t be sure if it is an option until 3 October but I am very hopeful that we can try this as it would be so much better to the alternative….

So to recap, went to the surgeon last Wednesday for a check-up, a Pet Scan on Thursday, Confirm Cancer on Friday, Biopsy on Monday, Head and Neck clinic on Tuesday.

After all this we are now at a point of having a probable path for treatment although there are a few things to iron out before all finalised.

So the probable path is that on 6 October I will have a major operation. The operation will be a laryngectomy which is the surgical removal of the larynx, also called the voice box. At the same time they will remove part of my tongue and epiglottis.

Things that are outstanding before this comes final is to

– Investigate if at all possible to-do some Immunotherapy before operation
– Possible additional biopsy to see the extent of cancer spread on tongue
– Further surgeon reviews

Over the coming days there will be discussions with various experts to better understand the options that are available, why some are not available and to better understand the process of talking through my throat.

The coming few weeks before the operation I will focus on giving the girls the best school holidays they have ever had and spending as much time as possible just talking and closing off things that I can before I go through a period of being in hospital and mute.

This is clearly personally a difficult time, I have lost a lot over the last 14 months, but I am also more and more aware of how much more there is to lose so will be doing everything possible to make sure I survive this shit and continue to be more and more thank full for what I have got.

Hopefully over the coming weeks I have news that changes the path above, but this is where it is at the moment.

So after a few months away and now making an announcement professionally about where I am at, here is a quick update on where the cancer is at.

As of Wednesday 13-9 it looks like I likely have Cancer again. Thursday they will do a PET scan and then have a Biopsy scheduled for Monday. If it is cancer the probable treatment will be to remove my larynx (voice box) obviously all fingers and toes are crossed in the hope this is not the case but that is where things currently sit.

I have had an increasingly sore throat over the past 4 weeks which is why I got it checked out. I still continue to suffer from not being able to physical eat, fatigue, saliva, etc… but nothing new there.

Will keep people updated here for those interested, won’t bombard Facebook, Instagram etc… with updates and just wanted to set this post-up so I could quickly update everybody without having to send a bunch of messages out.

Feel free to message me though, just please understand if I am slow to respond.

UPDATE: 15 September

• PET scan results shows Cancer, looks localised to Throat (epiglottis, near back tongue) progressing ahead with Biopsy on Monday.

UPDATE: 18 September

• Biopsy done, nothing too much to report a bit of blood a bit of chocking but all good.

QUICK UPDATE: 19 September

• I will do a full post sometime in the next 24hrs as to the detail,  but at the moment looks like operation on 6 October to remove epiglottis, some tongue, voice box.  Over the next few days will have some more appointments and maybe a another biopsy Friday.
• Full update click here

Hello,

Please excuse the broadcast nature of this communication. This has taken much thought and deliberation.

Over the next month or so, I will be stepping away from all work for a period of at least two years.  The reason for this is to focus 100% on my health and my family.

As you know I have now had Cancer twice in the last twelve months. This cancer is thought to have been caused by radiation treatment received for a different cancer in 2015, and currently my prognosis is very precarious.

To be frank, if working by percentages, the reality is that there is a much higher chance of me being dead in the next 5 years than alive.

What you may not be fully aware of are my day-to-day difficulties, not being able to eat or drink for over a year now, constant fatigue and bleeding in my throat after talking. My health situation is not simple and managing these daily challenges is taking its toll.

The risk of cancer recurrence and subsequent death has made me pause and realise that I need to focus 100% on giving myself the highest chance of succeeding in staying alive for my myself, and for my family.

I have put my heart and soul into making DiMO a product that can change the way that publishers work, to put creative ahead of administration and help keep publishing businesses profitable, and I’m proud of what we have achieved so far for the publishers using our software.

I’ve struggled with the decision to step away from the business, it is a real personal conflict, and I wish I could be a part of its completion, but I need to hand it over. I’ve become acutely aware of the fragility of life, and I’m choosing to give myself and my family all my focus and energy for my foreseeable future.

Amanda Maclean, who has been with the business since March, will be working through the implications of this decision with our customers. DiMO has proven that it can significantly streamline and simplify publishing services, saving time and money for publishing business. The software is robust, however, given my decision to stop work completely, a fundamental change to the way the business is supported and funded will be required. I truly believe that DiMO can continue to make a difference now and into the future, and I will do everything I can to help ensure this.

Cancer is a tricky disease to say the least, but I am confident that despite the odds I can beat it. So, don’t write me off just yet! I need to take the time now, and do all I can, in the hope that I’ll be around annoying people for many years to come 🙂

Well its been well over three months since my last update and it feels like its been a real busy time with many ups and downs, too many to mention all here and the overall summary ends up in a similar place to where I was when I wrote the last update.

I suppose the big news from the cancer front is that they did discover more cancer in my throat on February 1 after being alerted to something wrong when I coughed up some blood. Obviously not ideal, but something I kind of felt was coming after feeling pretty down for most of January. The result of the new cancer was two operations, not near as extreme as the first but still enough to give me a bloody sore throat especially on the 2nd where the initial recover was very difficult.

Both procedures involved using a “laser” on my throat and for the first time they also went as far as the voice box which was affected and it hurts to talk. (although this is not anticipated to last)

I am now ladened with lots of new drugs and painkillers to manage the recover which is anticipated to take a few more weeks yet to resolve.

Most other health related stuff stays the same, still lots of saliva (but it is improving), not able to swallow (not sure if this is improving), still take all food and water through a tube.

my work

Although a lot has been happening here, I don’t have much to say. In summary the year started bad, overwhelmed mainly created by being let down by someone and then the cancer operation but things have improved greatly, we have new people on board and Amanda Maclean has come on-board and had an immediate impact for both our customers and taking the pressure off me, which I really needed.

Reconnecting with the world

Because of the voice and the pain, I have not been in a position to talk or not have visitors so things have regressed on this front. I am slowly learning to be more concise 🙂 and trying to talk a lot less so we will see how I go.

Thankyou

There truly are some amazing people out there and continue to feel very thankful!

When I wrote my last update things day-to-day were not that great, and were quite shit mainly due to the inability to stop saliva being over generated in my mouth when ever I did any movement like walking upstairs or driving a car. The result was it would just flow uncontrollably out of my mouth. If that happened too much then it would go down the wrong way and I would get an acidified reflux and feel sick for hours.

Well the good news is this although not completely fixed is now treated, I have a injection line in my stomach that I can put an injection into and that removes the moisture for a few hours and because there is no moisture, I don’t feel sick as often. I have also had Botox to try and remove the need for the injection but that has not worked that great at fixing the problem or at making me better looking 🙂

Although I still can’t swallow and am still very tired that injection has been a life changer, it is meaning that I can start to reconnect with the world and do stuff with family and friends and because of that I feel heaps better and much more positive about things.

The lack of swallowing is still very annoying, I have done my best to make it work for me and I am setting up little feeding stations around the house so I can eat at the table and in other places rather than being stuck in the bedroom.

So moving forward I will continue to be working on the swallowing piece and hope that I can do it by December.

The only other news is I have had a follow-up PET scan. It was inconclusive so will be having some additional follow-ups over the coming weeks.

my work

With three days notice before this cancer it was very hard to get all things organised well before I went on this journey. Our small team led by Grace , Amy and Arshpreet have done a great job of making sure that the software is running well and requests are being responded to. We however have had major delays in our implementations as these were heavily reliant on me. I have with the very limited-time I can been working through the backlog to get things back on track. My main focus is now on making structural changes so implementations can be better supported without being reliant on myself which will allow me to-do what I love which is architecting the best software for publishers there is. I am extremely grateful and humbled by the patience of my customers and am determined to both pay back that loyalty but also put in place a structure that can run without me if my health deteriorated in the future.

Having said the above this is of course done with a careful balance of putting my health first and trying to keep the stress under control as I am only able to spend very limited time on this task at this stage of my recovery.

Reconnecting with the world

This cancer shit makes you take stock of what is important and never to take anything for granted.

Part of that process for me is realising how important people and community are and the shit job I have done ensuring I keep connected to those people and communities that make me happy. I am making efforts to reach out and to go to more things but please don’t hesitate to reach out if you want to, I may not be able to turn-up to things for long or be slow in responding but I will do my best to get there.

Thankyou

They say that with cancer you learn who your friends are, and I am so blessed to have some of the greatest friends anyone could hope for. This sickness has gone on much longer than I would have hoped and those who have dropped by to see how I am and been so extremely generous in so many ways I can’t thank enough. This has contributed so much on keeping positive, not to mention making me feel so humbed and at times very emotional 🙂

There truely are some amazing people out there!

Kirsten and Lee

I don’t say it enough, but Kirsten is the best wife in the world and has taken on so much to support our family and me over these past months. This week to add to the list is coping with the sudden loss of one of her closest friends Lee. Lee was a really great guy and will be terribly missed and has been taken way to young. Lee I will miss you, it will be very hard to find someone else to call me Greek God by default:-) Kirsten I love you so much !

That’s me until the next time !

It is now 9 weeks since my operation, not much has changed since my last update and all I can say about recovery is its slow.

How I feel

I am feeling ok, I seem to be tired a lot and sleep seems to be excessive or not enough. In my last update I said was confident that by the 4 Sept (fathers day) things will be much improved and I will at least have some clarity, I turned out to be wrong.

Overall I would probably say I am over it, faced with at least another two months of feeding through a tube and all the other stuff just fills me with angst, which I am sure will be short lived and my attitude will improve soon but is what it is at present.

Medically where are things at

The key things that am working on at the moment are;

Swallowing

As with last update there is little progress here, I still can’t swallow and am working on therapy to help me get there. Overall, the team is positive and the best timeline is we hope to see progress in the next two months.

Until this progresses I am stuck with the tube directly into my stomach where I put all my food, water and medicine through/

Nausea, Reflux and Secretion

I need to constantly be spitting out and wiping away secretions. This is a 24hr a day thing, I go to sleep wiping my mouth and wake up coughing it all up. It also causes a crazy amount of reflux to the point of vomiting if I don’t use a combination of drugs some class A (that make me tired) to charm it down. Over the coming weeks I will get some Botox that will hopefully full reverse this and will then switch to dealing with an extremely dry mouth, but at this point looking forward to the change.

Skin Graft

The Skin Graft on my wrist is in a good condition now (picture above) so can stop my three weekly visits to the nurse as of the end of this week.

Where to from here.

Today it was decided to talk in months instead of weeks so over the next few months the focus is on being able to swallow, resting as much as I can to recover and trying to-do some work that can’t be avoided.

Unfortunately work is at a point where it can’t be avoided so I am experimenting as best I can to try and get my energy levels to a point where this is consistently possible, rather than sporadic windows.

I have a follow-up PET scan next month and will continue my treatments etc..

I continue to try and build on the energy I get from the family and the occasional visitor, feel free to drop around and say hi.

 oh and one last thing. My girls are doing a fun run any support you can give them would be awesome.

Link to support Lexi

https://app.schoolfundraising.com.au/fundraising/lexi-2f49a472-7e18-4c2c-a487-ba9520e11b2b

Link to support Zoe

https://app.schoolfundraising.com.au/fundraising/zoe-10d29cc8-9ee6-425a-a636-b8c0296bd6e7