It was as painful, uncomfortable and torturous as usual. Nothing more, nothing less. The cameras up the nose and down the throat, the hold my tongue while you shove a couple of fingers down the sides of my throat and chastise me when I gag and almost vomit, the same old routine I've been through so many times over the past years. You can read up on my previous visits in the archives here.

But I was not prepared for the end of our visit. As I set at his desk he looked over my previous results, my PET scans, my evolution, ... Finally he looked at me and said that after 6 years of monitoring, and as the past 3 years have been stable, he considers me cured. He considers that I no longer need the regular exams and scans. He dictated a letter to my generalist and my original radiation therapist with an explanation and stating that I no longer need scheduled exams. We all agree that I should be extra careful and monitor my throat area myself. If anything unusual appears (loss of voice, voice change, long-lasting sore throat, any lumps anywhere, ...) I should call my specialist who will book me in for an urgent verification.

No more invasive throat exams? No more unbearably suspense-enducing PET scans? I can deal with that.

It appears as though my throat condition will no longer evolve. The state it is in now is the state it will continue to be in for a very long time. I've learned to live with the eternal dry mouth, thick mucus, sensitive internal throat walls, stiff side of the neck around the surgical scar area and even the loss of balance. I will continue to do so with the knowledge that, although it will most likely not get any better, it's not going to get any worse any time soon.

No more cancer? No more exams?

Best news... Ever!!!

I wasn't going to write anything. But a post by Robert Llewellyn over on Google + pushed me to express myself...

Although I'm a bit younger I know that 56 is way too young. There's not enough I can say about how much cancer sucks. I was diagnosed with throat cancer 6 years ago, at 42, and went through all of the treatment which is why I'm still here and writing this now.

Jobs was an idol of mine. The Da Vinci of the tech world: both an artist and a scientist. Able to see technology as something beautiful and look at it differently. Able to envision tech in the future in such a way that it was a pleasure and not just something amazingly practical. Plus, let's admit it, that man had 2 of the biggest balls in the tech world. He knew what he wanted and he did what it took to make it happen. Knowing better than your clients what they will want is not fascism. It's a megalomaniacal understanding that you actually know and understand some things that they don't. If car designers built cars as they thought they should be instead of how they think we want them to be and how the petrol companies ask them to be we would all be flying around (literally) in electric cars which pilot themselves. Just an example.

Steve Jobs may not have been the inventor of everything he brought to us. But he knew how to improve upon just about anything and take something which we often found little interest in and make it beautiful and wonderful. Hell, he could even take 3 quotes from 3 other people and create 1 simplified and powerful quote so beautiful that we forget the other 3 "originals". In the tech world he made it so we no longer remember the Walkman, the original Windows Mobile smart phones which were around for years and the Windows tablets which were around for a decade. He wasn't the first with any of those. He simply made them so much better that we actually wanted them. He knew what we would want because he knew what he would want and what would make him happy. Steve was one of the few remaining tech CEOs who literally giggled with pleasure over technological advances, products and achievements. He loved this stuff and we, who love the same stuff, loved him.

In the end though Steve Jobs was a man. An amazing man. Who really lived. He leaves behind a wife and children. The world lost, yet another, valuable man.

FUCK CANCER!

http://cancergeek.squarespace.com/cancergeek/2005/9/9/bad-news.html

My life changed from that moment on. I became a cancer victim. I also immediately became a cancer fighter. I then fought through my own personal war with battles which seemed worse than hell itself. But, to be honest looking back at them now, they were actually quite relatively easy in comparison to so many battles I have heard about since. Eventually I became a cancer survivor.

Last year I hit that extremely important 5-year milestone. I had watched my survival odds evolve over the years: 20% that first year, 40% the next, 60% the next, 80% the next and finally... we all agreed: I have survived. I hated those odds. As a tech geek I was obsessed with the numbers and the overload of information I could get... everywhere. 

Now it's 6 years and I am still cancer free. I still have a few handicaps which will most likely stay with me forever:

• the rather obvious scars (neck & chest),
• the constantly dry throat and constant need for water, 
• the inability to eat dry foods (bread, pasta, rice, ...) without some form of sauce, 
• the inability to smoke anything, 
• the inability to drink undiluted spirits, 
• the Kryptonite-like aversion to certain chemicals, which make me choke with coughing spasms, such as nail varnish (polish) remover
• acutely weakened eye-sight (tri-focals from now on)
• and lately the apparent, and extremely frustrating, effects of Chemo Brain

I've learned to live quite well and quite happily with those little handicaps. I often forget that I have them and try to do something normal like bite in to the end of a baguette while walking without water... I then run to find a drink of something, anything, somewhere... quickly.

I have learned to deal with these little handicaps quite well as I certainly prefer them to the alternative: dead cancer victim.

Six years now and I celebrate often. This is just another year, of what I hope will be many, without cancer.

FUCK CANCER!

As a proud cancer survivor I joined and set up my page. I haven't filled that much in yet. But I'm sort of exploring it for the moment...

I'll add more info here as I use the service.

Their site : http://www.ihadcancer.com

My page : http://www.ihadcancer.com/derekerb/

They're also on Twitter (@IHadCancer) and they have created a Facebook page as well as a You Tube page.

Unfortunately SquareSpace does not make this easy. After discussion with their Tech Support the only valid option I could come up with which would allow me to keep everything (pictures, comments, ...) was to start from scratch.  I re-imported my old blog from Blogger in to my new personal blog. Luckily I have 3 screens on my desktop. I loaded my cancer blog on one screen and my new personal blog on another screen. I went through each and every entry from the current back to the beginning of this blog. If I wanted to keep it only on the cancer blog I would delete it from the personal blog or vice-versa. If I wanted to keep it on both, as there were some entries which were both generic and included information which might be of interest to those following my cancer-related experiences, then I left it. After deleting an entry SquareSpace would go back to the first page of the blog so I would have to use the Archives section to go back to where I was.

I now, finally, have two different blogs for different purposes:

Cancer Geek
My blog for my experience with cancer and it starts from my finding my first lump, not knowing what it was, and continues through diagnosis, surgery, treatments and followups and will continue.

Derek Erb
My blog for everything else. This is where I can add just about anything I want to ramble about which does not fit on a tweet in Twitter and which I want to share with more than just my friends on Facebook. It can be simple diary entries as to what I've done or what's happened at a given moment or my thoughts on products, technologies, services and systems of interest... to me. Although it starts from when I first started blogging, January 2005, you will notice a big hole from September 2005 through December 2005. All of my entries for that period are on the Cancer Geek blog.

I am hoping that these two separate blogs will make it easier for readers who are only interested in one or the other aspect of my life and ideas.

This will also be part of a new web presence I am currently working on which will allow me to create a home for all of my various activities throughout the Internet...

I apologise for the relatively quick, and certainly unfinished, page layout of both blogs. I will be playing around with that in the future. But I wanted to get the content out there, and the separation in place, to allow me to move forward in the other aspects of this project.

Enjoy!

This Christmas is one of those where I tend to forget I ever went through all of that. It's been a little over 4 years now. But I forget the pain, the suffering, the battle... I'm glad I can forget.

I am happy to be able to spend Christmas with my family at home. My youngest daughter is still alive which is amazing as throughout this difficult rebelliously adolescent period we have threatened her lift often. My eldest daughter is back home with us for a couple of days and that is just priceless. She is still the same spoiled pain in the ass I love dearly. But it's nice to have her around for however long she wants. My wife is also still with me, for whatever reasons she may have which are still a wonderful mystery to me, and for this I am eternally grateful.

Christmas for us is certainly not a religious experience. It is just a simple time when we all take time from everything else to be together for a bit. I'm glad to still be here to be part of it.

Five Christmases have gone by since my diagnosis and treatment. They have all been different. I am thankful for everyone of them.

Until next Christmas...

Please read the following blog entry from, one of my broadcasting idols, Gareth Mitchell of the BBC World Service:

The Connected Climate

With big thanks to Derek for hosting this on his / her blog, here’s my account of recording the recent programme on energy production in India for the BBC’s The Climate Connection season.

The first sign of trouble was a heated exchange that suddenly blew up between an armed security guard and our driver Antony. Though the raised voices were in Tamil, it was clear that the guard was deeply unhappy, pointing angrily to my camera and recording equipment.

We were at the entrance to Kalpakkam, a small township that serves the nearby Madras Atomic Power Station. We had interviewed the plant’s chief superintendent for our edition of The Climate Connection season on the BBC, exploring how India can meet its sharply increasing demand for electricity whilst keeping its carbon emissions in check.

After the interview, we’d wandered into the township to speak to the residents. We expected them to be lauding the employment and economic benefits of having a large power station on their doorstep and crowing about this reliable source of electricity, a luxury unavailable to many who live in India’s rural communities.

Instead, we heard that the power actually bypasses the township in favour of the 8 million inhabitants of Chennai about 70km north. They told us that the power station forbids other businesses locating within the area, thereby curbing job opportunities.

Most seriously, the villagers claimed that power station workers had become ill, with several dying of cancer and that some the township’s children were sick and lethargic. How can you be sure? I asked, anything could be making them ill, you can’t be certain it’s the power station. But, they pressed on, repeating their claims that the plant was a source of harm and hardship rather than wealth and opportunity.

The guard threatened to report us to the authorities and was making noises about us being detained until Antony worked some kind of magic and the man let it go. But the villagers’ revelations were safely recorded and I had a stash of photos. Right now, it was definitely time to go.

However attitudes to the power station are different in the city.

The ever-resourceful Antony drove us to a neighbourhood of workshops and small business units in Chennai where he knew twin brothers who run a successful firm manufacturing and exporting cashew nut processing machines. The city’s creaking electricity supply only provides 70 per cent of the power they need to run their heavy machinery.

Annoying though that seems, the brothers are quite sanguine. Out in the countryside, full power is only available for five hours a day. At least their supply is relatively stable, even if it is a lower fat version of what they’d ideally like.

And, for them, the Kalpakkam nuclear power station is a good thing. It’s not, by a long way, the sole source of their electricity but the brothers are glad it’s there and they’re hoping for more nuclear plants in the future. They dismiss any suggestion that nuclear is a source of health problems. Anything that props up the power supply will be good for business.

Earlier we had interviewed Dr Pugazhendi – a firebrand of a man who has examined many Kalpakkam residents. Talking at us for forty minutes without pausing for breath, Dr Pugazhendi listed cases of cancer and other illnesses associated with the nuclear power station, insisting that he has solid evidence but that he has been blocked from carrying out full studies and publishing the findings.

The fact remains that there is no hard, published evidence that the nuclear plant has caused any illness among the local population. The station’s management told us that they take their workers’ health very seriously, regularly monitoring their wellness.

One of the villagers we met in Kalpakkam had given us Dr Pugazhendi’s  mobile phone number and when I called him, he jumped at the chance of talking to us. He’d drop everything, he said, and come and find us wherever we were.

Whilst he was on his way, we turned up unannounced at the HQ of the Tamil Nadu State Electricity Board. A contact in town had recommended we speak to the board’s chairman, Mr C P Singh.

Sure enough, Mr Singh, an affable gentleman in an office overlooking the sprawling monsoon soaked metropolis granted us an interview. The most penetrating questions came from my companion Hita Unnikrishnan, a feisty young ‘Climate Champion’ of the British Council of India. A recent life sciences graduate, she now lectures in Botany at Banaglore’s Jyoti Nivas College. She was travelling with me, taking on the role as local protagonist in our programme.

Mr Singh obligingly fielded Hita’s onslaught of questions. We learned that Tamil Nadu was the first state in India to supply electricity to all households and that it is one of the most progressive in the country when it comes to green energy. Half its power comes from hydroelectric and wind.

But the board is struggling to keep up with Tamil Nadu’s rapidly increasing demand. Whilst renewables are part of the solution, the state needs more power stations. For now, there will be more power cuts and the state will have to continue buying in expensive electricity from outside.

But I spent most of the interview in a state of considerable anxiety. Earlier, after negotiating with Mr Singh’s assistant for permission to meet the boss, I had been awaiting the verdict in a holding room down the corridor, when Dr Pugazhendi called me, saying he was in the area. I let slip exactly where we were.

This, I feared, was a potentially catastrophic move. One assumes that a well-known and vocal local opponent of the state’s nuclear power station would be less than welcome in the Electricity Board’s offices.

Throughout the interview with the chairman I had unsettling visions of Dr Pugazhendi, barging his way in, pushing aides and assistants aside and insisting on speaking to the BBC.

In the event, we met Dr Pugazhendi later on in a car park down the road and our interview at the Electricity Board passed off without incident. This was good. I could have done without a second altercation with security officials in as many days.

You can hear the programme at:

http://www.bbc.co.uk/programmes/p0053sqq

Or download it here:

http://www.erb.com/mp3/oneplanet_20091203-1031a.mp3

Video on YouTube:

http://www.youtube.com/watch?v=kbLSM2hFL7Q

 Photos on Flickr:

http://www.flickr.com/photos/23404067@N06/sets/72157622927385208/

It's not cheap. But it's exactly what quite a lot of people could use to be able to manage their own blog or simple web site themselves with no programming.  I've been playing around with the layout management tools and WYSIWYG editors most of the day today and I'm quite pleased.

I have therefore moved my blog from Blogspot to here on Squarespace.  I even now have my own domain:

http://www.cancergeek.me

At the moment this is just my original blog fully imported here, automatically; the Archives page to go back and look at previous entries; and a bunch of widgets on the right to play with...

I'll be adding the "About Me" page some time in the future as well as trying out some of the other tools, widgets and goodies they offer.

In the mean time: Enjoy!

PS: Let me know what you think of all of this in the Comments section below.

It's at this point that an intelligent, compassionate and understanding man would have immediately said either "everything is OK" or "there's a problem we need to look in to" or something else negative. But if it's good news that's where he should have started with the simple understanding that the cancer victim on the other end of the phone has been waiting for weeks, and now months, for these results which are life-important. In his mind it's always "no news is good news" and "if there was the slightest problem we would contact you and look in to it." He just doesn't understand that until I hear the simple "everything is OK" words I am desperately longing for I am more and  more worried. It is even more worrisome when he tells me that he only just now received my results which, to me, means that he could not have reacted one way or the other up to now.

Instead of simply giving me the 3 word answer he now goes in to a long technical and medical description reading literally from the faxed results in front of him: "absence total de lesion cancer... aucun changement biologique depuis dernier..." and on and on... He finishes and I head that he has finished.

I therefore ask the question which should be obvious and which he has not yet answered: "all of that means?"

Everything is fine. There is no sign of any cancer anywhere in your body and no change or evolution since your last PET scan of 18 months ago.

At this point I'm too happy to yell at him "You couldn't have just started our conversation with that?!?!?!?!"

Over 4 years since diagnosis, surgery and treatment I am still Cancer free and I can continue to use my now favourite phrase:

F*©k Cancer!!!

I know he will tell me, like he did last time, that "if there were any problems we would have contacted you immediately and reacted". But, he just doesn't understand that, I actually need the reassurance. He has no idea how we cancer survivors eagerly await those simple words "there's nothing" just to let us know the damn things haven't come back somewhere else in our body.

I think quite a lot of cancer victims/survivors feel a bit out of touch with their body. They don't know how these things got in there and once they've gotten them out (hopefully) they definitely do not, under any circumstance, want them back. That's why we go through these tests. That's why we go through these scans. It's not just because the doctors tell us to.

It's because we want someone in the medical profession to simply look at a test and/or a scan and then say "There's no cancer in you".

It doesn't matter if they add the "right now" modifier afterwards. It's a wonderful feeling, every now and then, to know that at any given moment there is no cancer in me.

Waiting for my doctor to return my calls...

In the mean time keep following me on Twitter to keep up with the day-to-day trials and tribulations of my life: @dcefrance.