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

It is now 6 weeks since my operation, I am out of hospital and at home. Although recovery is slow things are improving especially in the last week.

How I feel

Overall, I am feeling pretty good, I seem to sleep a lot and even though everyday is not necessarily better than the last overall things are improving.

My energy levels are low, however I do have windows of clarity where I can do some work and catch-up on things but its pretty inconsistent and are starting to get to about an hou before needing to rest.

I am confident that by the 4 Sept (fathers day) things will be much improved and I will at least have some clarity but its so slow it drives me crazy.

Medically where are things at

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

Swallowing

There is little progress here, I can’t swallow at all and am starting therapy to help me get there. Overall, the team is positive I will get there but there is no timeline at the moment for when that will happen.

Until this progresses I am stuck with the tube directly into my stomach where I put all my food and medicine through (I crush my tablets then put them down through the tube)

Skin Graft

The Skin Graft on my wrist continue to repair. I need to get the dressing changed every two days and will do for the next 5 weeks. Apart from a little pain, it makes it difficult to type on the keyboard but overall the progress of repair is good.

Talking

I can talk pretty well as long as my mouth is reasonably dry. I have an injection that I can give myself to dry things out when I need to. I do however need to limit the amount of talking I do (which I am very bad at) as the more talking I do the more tired and sore I get.

Where to from here.

Over the next few weeks the focus is on working on being able to swallow, resting as much as I can to recover and starting to get across what has been going on while I have been sick

I am trying to build on the energy I get from the family, the occasional visitor and putting together some plans for the next 12 months.

Well I came here on 13 July for an operation to remove cancer from my throat and 24 days later I am here hospital writing this update.  It’s been an interesting and dare I say it difficult slog so far as I work to get to the stage where I can reliably go home and learn to swallow and hopefully eat normally again.

So how did the operation go?

The operation itself went well although I understand that it was 14 hours all-up on the operating table and then 3 days in intensive care the removing of the cancer seems successful.  

After the operation and the challenge of a tracheostomy tube and breathing through my neck I had some additional challenges that caused a number of trials that at all times were manageable but at most times were ugly,  lucky for me I can always close my eyes, grit my teeth and think of my two girls to keep me motivated to get through, I was surprised how effective this was to get over the times I had to call on this.

I had prepared myself for having a sore throat when I came out of my operation but had not anticipated all the other components that came together, with everything from a catheter to help me go to the toilet, a suction machine to help repair the skin graph in my arm, the machine to help me breath, the lines in my veins to help me medicate and the tube in my stomach to help me feed.

Ironically all of these things became manageable and it was not too long before they were all gone,  but the worse thing has been the nauseous / reflux that has resulted in vomiting that becomes complicated when you have a throat that can’t swallow things down let alone have stuff forced the other way.  This has mainly meant that I have been attempting not to move around or do much of anything to try and avoid the sickness happening.

I do understand that all of this has been complicated by my cancer 6+ years ago and am extremely appreciative for the amazing level of care from the doctors, nurses and all the people around them helping me directly and my family, friends and colleagues helping me so much indirectly.

Where to from here?

Well, I am hoping that by finally having the energy to write this I might start to re-engage with the world, start to read more, respond more and start to move from the lying down all day looking blankly at home renovation shows to doing something more productive with my days.

Thankyou

A massive big thank you to those that have reached out with messages, and an even bigger thank you to all those who have reached out to Kirsten and have done many little and big things to make their lives much easier through this time,   in a period where it is impossible for me to-do anything it is so so appreciated.

Ok, so its been a very long time since I wrote on this blog, and I had intended to never write in this part of it again, but a little too much stress and a lot of bad luck I am writing here again.

After 2 years I was finally going to be on my way to sunny Greece. I needed to get there, away from the rain and to get perspective on the stress of the last 9 months.

But alas I have had to unpack the bags and prepare for what some people call “the fight” against cancer again. It of course it is not a fight but a ride that you must go on and your just a passenger.

Now the positive is that my prognosis is good, I have the best Surgeon in Richard Gallagher and a team around him that could not be better. They are amazing and I am very very lucky to have them in my corner.

So what’s happening

I have a cancer in my throat and the ugly is that I have a big operation in front of me to get rid of it. Unlike last time when they got it from the inside, they have to come in from the outside this time. This means all the goodies of a good surgery.

The way I understand it is 8+ hours of surgery, a feed tube to feed me for the next 6 weeks, a tracheostomy that stays in place for a few days so I can continue to breath while things heal, a cut out of the cancer at the back of my throat and a little more off my Epiglottis, a skin graft from my wrist to the inside of my neck to cover it up, some time in intensive care and then 1 – 2 weeks in hospital before going home to recover.

The sad thing about a journey like this is I have to drag the closest people to me through it especially my beautiful wife and the best two girls in the world Zoe and Lexi. I am extremely lucky to have them and my dad close at hand to go through this, I cannot help feel so bad for putting them through this again (yes I know its not my fault etc… ) . Some have asked how they can help and the only answer is anything you can think of to help Kirsten, Zoe and Lexi with your support and the occasional gesture to brighten up their day (Zoe and Lexi love books :-, Kirsten loves flowers and champagne)

Some answers to questions that I have been asked.

• No radiation, you can’t have radiation in the same place twice (bummer)
• No – to chemo
• HPV is the type of cancer, you can read about it and have a chuckle https://www.richardgallagher.com.au/news/hpv-oropharyngeal-cancer/
• No I have never smoked, and I have never taken drugs.

Now a little about my work and DiMO.

One of the things that has been so painful over the past few weeks is thinking about my work. Many understandably tell me don’t worry about work, and believe me if I was working a salary I wouldn’t care. Its hard for people to understand that DiMO is so much more for me than a vehicle to make money, it is a vision, a passion, a challenge to really make something that makes a difference.

I know that’s a bit weird and all but that’s the way it is. We have been doing really well and this cancer could not come at a more inconvenient time, we have built a great team, have been growing and going from strength to strength and were starting to look for investors.

I know the business will continue to run well and I am very lucky to have a great team with Grace, Amy, Alex, Arshpreet, Manpreet, Sharma and Kamal who work tirelessly to make DiMO work. It is my baby and it really matters to me and I kind of want to say just that, next to bringing up the two best girls in the world it is what I want to achieve and I am dedicated to it, and to me work really matters.

Where from here.

Today I will enjoy a beautiful Steak and at least 1/2 bottle of Felton Road (thanks G) and then I will go in to hospital on Wednesday 13th July and we will see what happens from there. I will update here when I can.

If you want to visit to see what a Spiros who is not talking looks like or to get a word in for a change, then contact Kirsten or send me a message on Facebook or whatsapp. If I don’t reply immediately hope you understand.

Thanks and your support means the world.

I wish more people realised that a skin cancer on the face, neck, scalp or ear can spread to a lymph node nearby. If you’ve had a skin cancer removed and develop a lump in your neck, you should seek professional medical advice as soon as possible. #HeadandNeckCancer https://t.co/wAHYFkbQo5

The Australian Government announced an improved HPV vaccine for 12 & 13-year-olds from next year this protects about 5% of cancers worldwide including cervical cancer, some forms of throat cancer (this is what I had) and anal cancer.

read more: https://www.theguardian.com/society/2017/oct/08/australian-children-to-get-new-hpv-vaccine-against-90-of-cervical-cancers 

On Thursday I was lucky enough to attend the Pathfinders forum.

Apart from the sadness and fear of hearing about how wild and random cancer is, it was really good to hear from people who are really making a difference in the way that treatments and cures for Cancer are treated.

I really encourage anyone who reads this to get involved and check it out. http://www.pathfindersgroup.com.au/cancer-research-revolution-forum/

Video Update – 18 February

Personal Blog – 18 February 2016 from Spiros Kotsialos on Vimeo.