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I was interviewed for an article on Health 2.0 in Emerce. A Dutch magazine for the interactive peeps and bizznezzz. Read below in Dutch or have fun with the Google translation ( “You go as a patient co-directs perform.”).

Revolutie in de zorg: naar een videoconsult

2 januari 2009 – Door Mischa de Bruijn

Jaren later dan andere sectoren staat de gezondheidszorg nu ook een informatierevolutie te wachten: Health 2.0. De innovaties worden gedreven door patiënten die de touwtjes meer in handen willen krijgen, maar vooral door het geld: er lonkt een miljardenmarkt.

Maarten Lens-FitzGerald blogt over zijn chemotherapie op Maartensjourney. com. Twee Amerikanen met dezelfde vorm van kanker als hij reageerden op zijn (Engelstalige) posts. “De ene was al klaar met de behandeling, de ander zat net een week achter mij. We konden elkaar helpen door ervaringen uit te wisselen.”

De blog van Lens-Fitzgerald wordt op het web gezien als helemaal ‘Health 2.0’. Health 2.0, of ‘Zorg 2.0’, of ‘e-health’, is een containerbegrip voor allerlei innovaties in de zorg. Media als CNN, The New York Times en The Economist berichtten erover, in de VS worden er congressen over georganiseerd en heel langzaam kruipt de term de Nederlandse zorgwereld binnen. Maar wat houdt het in?

Wat internet kan betekenen voor de zorg – dat is de meest eenvoudige uitleg van Health 2.0. De talloze internetfora waar patiënten ervaringen uitwisselen, lijken de voorbode te zijn van grote veranderingen. Maartensjourney.com is dat misschien ook. De doorsnee patiënt zou wellicht niet op de gedachte komen om zijn PET-scan op internet te zetten, voor Lens-FitzGerald, een 37-jarige nieuwe-mediaprofessional (hij is mede-oprichter van SPRXmobile), is het een logische stap. “Vrienden, familie, mijn huisarts kunnen meekijken. Zo is er extra controle, en ze kunnen met vragen komen voor de specialist die ik zelf nog niet had bedacht.”

Het liefst zou Lens-FitzGerald zijn hele dossier van de afdeling oncologie online zetten, maar dat wordt lastig. “Het is handgeschreven”, zegt hij met een lachje. Lens-FitzGeralds met de pen ingevulde dossier illustreert het niveau van automatisering in de zorg. Mischa Klein van Siemens Business Development Health Care weet er alles van: “De zorg is een vrij traditionele wereld, hij loopt achter op andere bedrijfstakken.”

Fatale fout

De ouderwetse werkwijze blijft niet zonder gevolgen. Anesthesist Erik Korsten beschrijft een fatale fout in zijn eigen instelling, het Catharina Ziekenhuis in Eindhoven. Korsten is naast praktiserend medicus ook deeltijdhoogleraar aan de TU Eindhoven en werkt aan it-vernieuwingen binnen de zorg. Korsten: “Een vrouw met gewrichtsklachten kreeg door de reumatoloog een medicijn voorgeschreven waarvan bekend is dat het het aantal witte bloedlichamen doet dalen. Later komt de vrouw voor een totaal andere klacht – aambeien – weer in het ziekenhuis. De specialist ziet over het hoofd dat ze dat medicijn gebruikt en doet een incisie in een per definitie vuil gebied. Omdat ze geen afweer heeft, gaat ze dood.”

Het aantal soortgelijke fouten in de zorg is duizelingwekkend. In het tv-programma Buitenhof zei minister Klink van Volksgezondheid dat er jaarlijks 18.000 tot 19.000 mensen in het ziekenhuis worden opgenomen, omdat ze medicijnen krijgen voorgeschreven die met elkaar in strijd zijn. Andere schrikbarende cijfers, uit een onderzoek van het Nederlands Patiënten Platform en het Nationaal ICT Instituut van enkele jaren terug: in 2003 zijn veertigduizend mensen door de huisarts of in het ziekenhuis verkeerd behandeld of geopereerd, door fouten in hun medische dossier of bij de overdracht van informatie. Nog eens 75.000 mensen kregen door storingen in de communicatie verkeerde medicijnen. De verschillende fouten maakten 18.000 extra operaties nodig.

Veel blunders zouden eenvoudig te voorkomen zijn als medici en apothekers elektronisch de medische historie van patiënten kunnen raadplegen. Dit moet mogelijk worden met de komst van het Elektronisch Patiëntendossier (EPD, zie kader). Een elektronisch dossier maakt het niet alleen veel makkelijker om gegevens uit te wisselen, er kan ook software aan worden gekoppeld die artsen waarschuwt als ze verkeerde pillen voorschrijven. Korsten: “Ik denk dat beslissingsondersteuning voor artsen dé revolutie zal zijn in de gezondheidszorg. Er worden nu fouten gemaakt waarvan je denkt: hoe is het in godsnaam mogelijk? Maar ook mensen die serieus met hun taak bezig zijn, zien dingen over het hoofd. Een goed waarschuwingssysteem kan helpen die fouten uit de wereld te krijgen.”

Ook een concern als Siemens speelt in op de vraag naar dit soort elektronische ondersteuning van artsen, met een softwareoplossing als Soarian. “Als er medicatie wordt gegeven, kijkt Soarian of die wel samengaat met andere medicijnen of de meest recente labuitslagen”, aldus Cor Rumping van Siemens Medical Solutions.

Google

Wie rondbelt met deskundigen, ziet heel langzaam de contouren van een informatierevolutie in de zorg, waaronder het EPD een belangrijke pijler moet worden. De andere pijler staat al: de gigantische hoeveelheid informatie die op internet is te vinden over aandoeningen en behandelingen, en de uitwisseling van ervaringen tussen patiënten.

Zo is ‘dokter Google’ een belangrijke adviseur: zeven op de tien mensen zouden de zoekmachine raadplegen voordat ze naar een arts gaan. Er zijn talloze gespecialiseerde gezondheidssites. Een greep: Patientslikeme.com, Diabetesweb.nl, Sugarstats.com, Dailystrength.org. Op YouTube zijn honderden filmpjes te vinden van operaties en andere behandelingen.

Medici zelf zijn nog wat terughoudender met het gebruik van internet als informatiebron. “De patiënt loopt voor op de be roepsgroep”, zegt Lucien Engelen, hoofd Acute Zorgregio Oost (een samenwerkingsverband van zorgaanbieders, waaronder het UMC St Radboud, huisartsenposten, ambulancediensten en apothekers in de regio). “Een heel groot gedeelte van onze beroepsgroep is helemaal niet op de hoogte van wat nieuwe media bieden.”

Engelen volgt daarom het voorbeeld van de patiënt: hij heeft een kennispoort opgezet voor zorgprofessionals. “We bouwen een community waar relevante informatie over acute zorg bij elkaar komt. We hebben bloggers: artsen, ziekenhuisdirecteuren, verpleegkundigen en beleidsondersteuners. Professionals met een inlogcode kunnen hun mening geven.” De opzet doet volgens Engelen erg denken aan een site voor een heel andere beroepsgroep: Marketingfacts.nl. Dat is geen toeval, aangezien Marketingfactsoprichter Marco Derksen als adviseur betrokken is bij de portal.

In het midden

Het beeld van de alwetende arts verdwijnt, weet Martijn Hulst. Hulst werkt bij internetbureau TamTam en organisatieadviesbureau Hutspot. Hij helpt zorginstellingen met hun internetinnovaties en blogt over Health 2.0. “Er is een cultuurverandering gaande. De patiënt komt steeds meer in het midden te staan”, stelt hij. De toekomst die Hulst schetst, vertoont overeenkomsten met wat er is gebeurd met consumentenelektronica. De consument is daar veranderd van iemand die zich in de winkel een veel te duur tv-toestel liet aansmeren, tot de bovenliggende partij: hij zoekt op internet welk apparaat het best bij hem past en vergelijkt de prijzen van de verschillende verkooppunten. Op het moment dat hij de elektronicazaak binnenstapt, weet hij vaak meer dan de verkoper.

Áls hij al de winkel binnenstapt, want niet zelden wordt alles online afgehandeld, tot de koop aan toe. Ook hier houdt de vergelijking met de zorg nog niet op. Kijk naar huisarts Jay Parkinson in Brooklyn, New York. Hij heeft geen praktijkruime, maar doet de meeste consulten online. Patiënten die hem willen raadplegen, kunnen hem tussen acht uur ’s ochtends en vijf uur ’s middags bereiken via instant messenger, e-mail of videochat. Wanneer het nodig is om een stethoscoop tegen iemands borst te houden of een huiduitslag te inspecteren, doet hij een huisbezoek. Het vervolgcontact kan weer online plaatsvinden. Hij gebruikt Liferecord.com om zijn medische dossiers bij te houden.

Voor dokters als Parkinson wordt het alleen maar makkelijker. Er komt steeds meer techniek beschikbaar die zorg op afstand versimpelt – de derde pijler onder de revolutie. De eenvoudigste vorm is de mobiele telefoon met camera: iemand die van zijn diëtiste moet bijhouden wat hij eet, kan zijn maaltijden fotograferen met zijn mobieltje. Talloze fabrikanten, zoals Siemens en Philips, ontwikkelen speciale apparaten. Zelfs gameconsoleproducent Nintendo doet mee. Voor diabetespatiënten heeft Nintendo de Glucoboy, een glucosemeter.

Miljarden

Dat zoveel commerciële partijen zich bezighouden met e-health geeft aan dat zij een enorme markt denken te gaan ontginnen. Zij hebben geluisterd naar minister Klink, die verwacht dat er over elf jaar 500.000 (!) extra arbeidskrachten in de zorg nodig zijn om de door de vergrijzing exploderende vraag op te vangen. Menskracht alleen kan niet aan deze vraag voldoen, techniek zal een behoorlijk handje moeten helpen. Volgens telecomprovider Orange is de markt voor telezorg wereldwijd maar liefst 450 miljard euro groot.

Aantrekkelijk genoeg dus om erin te springen, maar in Nederland heerst nog een beetje koudwatervrees. Door het huidige financieringssysteem, waarbij betaald wordt per behandeling, is het onduidelijk wie voor de kosten van innovatie moet opdraaien. Rumping van Siemens: “Waar komen de baten te liggen? Door het stellen van betere diagnoses met behulp van automatisering hoeven er straks misschien minder mensen naar het ziekenhuis, maar nemen de kosten van de huisarts wellicht toe.”

Toch gaan de ontwikkelingen door. Intel introduceert naar verwachting volgend jaar de Intel Health Guide in Nederland. De belangrijkste feature van het ding is tweeweg videoconferencing tussen patiënt en dokter. In het apparaat kan een hele reeks aan meetapparatuur worden geplugd – onder meer bloeddrukmeters, glucosemeters, een elektronische weegschaal – om de gezondheid van de patiënt te monitoren. De Intel Health Guide suggereert door zijn witte kleur, afgeronde hoeken, touchscreen en schaarse knoppen het gebruiksgemak van een iPhone. De foto’s in de brochure doen vermoeden dat Intel de doelgroep vooral zoekt onder oudere patiënten, mensen die misschien niet zo handig zijn met opzetten van een webcamsessie via een gewone pc.

Webgemeenschap

Een stap verder gaat de Health Presence van Cisco Systems, een soort douchecabine waarin de patiënt plaatsneemt voor een consult op afstand (zie kader). De meeste technieken hebben één ding gemeen: ze communiceren via het internetprotocol. Sommigen zoeken zelfs direct aansluiting met de webgemeenschap, zoals de Glucoboy. Wie de Glucoboy op de Nintendo Gameboy aansluit, krijgt toegang tot een webgemeenschap waar ervaringen worden gedeeld en gezond leven wordt aangemoedigd.

Zo grijpen drie verschillende ontwikkelingen in elkaar: de late automatisering van de zorg plus het daarmee samenhangende Elektronisch Patientendossier, de komst van ‘telezorg’ en de uitwisseling van informatie op internet. Wie straks met een gezondheidsklacht kampt raadpleegt eerst ‘dokter Google’, maakt vervolgens online een afspraak met een arts en kan daarna intensief met de medicus contact houden via telezorg. Omdat de patiënt makkelijk zijn dossier kan raadplegen, kan hij eenvoudig met de internetgemeenschap delen welke behandeling hij volgt. Hij is in staat second opinions aan te vragen bij artsen waar ook ter wereld, door ze toegang te geven tot zijn testuitslagen in zijn dossier.

Het resultaat volgens de hooggespannen verwachtingen: aanzienlijk minder medische fouten en enorm lagere kosten. Met Health 2.0 maakt de zorg een reuzenstap in efficiency. Maar het belangrijkste is volgens deskundigen dat straks alle informatielijnen bij de patiënt eindigen. Niet meer de zorgaanbieder, maar de patiënt komt midden in het web te zitten. Ervaringsdeskundige Lens-FitzGerald: “Je gaat als patiënt mede de regie voeren.”

Bron foto: xersti (CC)

Bekijk reacties (6)

Watch me talk in Dutch about what Iearned, how the 2.0 tools help me and what keeps me busy. It was taped at the Interactive New Years drink Shindig (with >400 of my best industry friends). I look tired and was tired 😎

I have been going to the gym since October but stopped because It was just taking too much energy.  At the gym I was doing a light circuit of machines and some cardio, but I needed help and guidance on what and how to do sports after chemo. I gained over 10 kilo’s during my treatment (20 pounds) and think that chocolate mouse is stronger then I am.

Through Gijbregt on twitter I found Tegenkracht (‘Counter Strength’). Tegenkracht is an organization started by Jelle Wolthuizen, a cancer patient who wanted to stay fit during treatments. There was no support or knowledge in that area for cancer patients. So he started an organization to help cancer patients with personal sports planning, workshops and other forms of recovery assistance. It is a non profit organization paid for by Sponsors and Individuals. Sadly Jelle Wolthuizen lost his unfair battle with cancer.

Tegenkracht is exactly what I was looking for. I set a personal goal of cycling to France and going up Mont Ventoux. With Tegenkracht I hope to archieve it. Coincidentally Jelle Wolthuizen was also a cyclist and also went for the Mont Ventoux.

After applying I was given a strength test by a sports doctor (which was Jessica Gal, former Olympic Judo-er). That was cool. Never did a strength test before, Like checking my resting and active heart rates. They also checked my blood and urine. I felt like a professional being checked for doping 8-).

They didn’t find anything except to determine that overall I am overweight and physically unfit. Yes, I knew that. With this data we have a base line to work with. In three months the changes will be visible. Of course I made her give me the data. Here is my active heart rate:
hartfilm_inspanning_07012008

The next step is the personal training guidance which I have started with a physical therapist (PT). My PT is Michiel Loeber, no wiki page yet, but pretty active in helping semi professional and professional sports teams and individuals. He is also experienced in helping people with Cancer. And he knows what AD2P is and recognized my G1. All of this takes place at the  Sports Medical Center in Amsterdam, which is pretty specialized. The Rabobank cycling team goes there for check-ups too (I saw them during my first visit). I guess I am pretty lucky again.

Today I had my first training. We are starting with cross weight training which is a mix of various bodybuilding exercises,; First arms, then stomache, etc. This will help return my core strength. To begin with, we are starting with heavy but short reps of 10, for a total of 30 minutes. To see how I react. There is no cardio yet, I am way too weak and will be much too tired. The key, I think, is that for every exercise I have help on what to do and how. Twice weekly I will now be doing this together with a slightly more active general life style. Like cycling and walking more.

That’s how I do sports after chemo.

France was great. My uncle’s house is amazing, the food was amazing and the area was amazing. We had the tail end of good weather and during the day we wore shorts. At night it could get cold. We didn’t have a TV but had a fireplace.  And Lori took her best pictures ever. We also visited my cousin who lives with her husband and three kids near Chambery, only a two hour drive away. We had never visited and really enjoyed seeing them.

Our 10 days were way to short.

Our trip to France was my turning Point . After this trip I picked up my life again. On all fronts. First off I joined a gym. I had gained over 10 kilo’s the last 5 months and was very weak. At the gym they helped me setup an easy training schedule. I also helped out at the office. Right away there was a project waiting for me.

I was very motivated during this time. I was back and on top of it. I made it through the chemo and my tumor shrank. Now I just needed to work myself up again. I did have a lot of side effects to deal with. My nails were coming off, I was tired again, the skin on my face was itchy and i didn’t have feeling in the soles of my feet. But i didn’t care. I was back!

And then Doc mailed that he was coming to Europe. “Lets do something” I replied. And 6 weeks later the VRMevent took place. VRM is an idea, a theory, I am very much interested in. In those 6 weeks i got a team together with whom I  filled an afternoon with cool speakers, arranged sponsors and a venue. We had 60 to 70 participants and everybody had a good time. My old employer RapidSugar was a sponsor and I had the opportunity to work again with Sander and Naos which was very nice.

Here is what Doc and others thought about the event. And here is me:

[Vimeo=2316457]

The weekend after that we had the MoMo speakers diner at my house again. One of the speakers was Bruce Sterling, a science fiction writer I have read since the early nineties and who’s books inspired me to do what I do now. It was sooooo cool to have him come to our house. The next day MoMo #8 took place. I was about to host it again but bailed at the last minute. I was too tired from the diner and the week before. At MoMo Bruce was the highlight by speaking to the audience with his cynical voice from the pulpit at the Rode hoed (click on his picture to see and hear it):

To get some air after a tough summer Lori went to visit her family and friends in the States for a couple of days. That was good for her and me. I hadn’t been on my own for months. It was pretty tricky. I really noticed that I wasn’t as strong as I thought I was. Physically it was a lot of work to take care of myself and the house. And I missed Lori a lot. I hope I still show here the appreciation I learn again that week.

Somewhere in the middle of this i had an appointment with my Oncologist to hear the results of my PET-scan and what further treatment he proposed. A PET scan is a scan which maps out all active tumor area’s.  The doctors news was bad. He said there was still a lot of tumor activity and that a new round of chemo might be necessary. That was another blow. I was so happy being back.  I was so focused on my road to recovery. And now it seemed that I might be due back at the hospital before Christmas.

Thanks to my blog I was in contact with Matt from the US who had had the same form of cancer that I have. He had helped me before with general advice and comfort from a fellow traveler. And he gave invaluable guidance. He said that doctors always want to continue treatment in our form of cancer but that it isn’t always necessary. The PET scans are always inconclusive. He gave me the email address for Dr Einhorn. He is the oncologist specialized in testicular cancer who helped Lance Armstrong and increased the survival rate from 15 to 85%. Together with my Oncologist we contacted him for a consult. He predicted that my planned biopsy would turn up nothing and that he expected that watchful waiting could commence.

He was right

😎

We celebrated the good news with Maarten & Darina and Jos & Anita at Ron Blaauw. A good 2 Michelin star restaurant.

The end of the year was busy with Christmas at my parents house, which was also attended by my Swiss Aunt Juliette and my brothers family. I surprised Lori with a Macbook to help her on the developmental path towards a photography career.

Together with my partners at SPRX we made a nice xmas video:

That last week of the year was relaxing and with lots of reflection. These three posts are part of that. I am still trying to come to grips with what happened. It was so much.

Writing these posts helps me put it all in perspective.  In particulare how busy the last three months have been. Everyday I am still bewildered with my physical weakness. Lori laughs at my groundhog day moments of continually rediscovering this, and lets me find out for myself that I am overdoing it.  Yesterday we went out shopping and after two hours it was over for me. That still surprises me. I stopped going to the gym because it made me more tired instead of making me more fit. I decided I need more guidance in recovering my strenght  and enrolled in Tegenkracht, which is an organization for cancer patients who want to get back on track through sports. My goal is to cycle to France and climb up the Mont Ventoux. I did it before and loved it!

My mind still hasn’t caught up with what happened to my body. I need to make time for that.

I truly believe it was a great year. All be it a busy and tough one.

I am thankful for Lori, for my family, for my friends; IRL and virtual.

2009 will be my year of recovery, balance and success:

  • The physical and mental recovery from cancer
  • Finding a new balance in myself
  • Making SPRX and our new startup Zcapes a success

Hearing that you have cancer, that you have a tumor the size of two fists between your lungs is a big blow. A tremendous event which hit me hard. I will never forget that Wednesday  June 4, 2008. That day is an HD movie in my brain. That Wednesday I found out something was wrong,  but what exactly I didn’t know.

Was it malignant? Or was it Benign? And because I had just given up my job I didn’t have that security or income insurance either. At that moment I was happy I was already in smart action mode due to the previously hyper busy months. And my zen training helped me too. I was sad and I didn’t know what was to happen next. That was the only thing I did know,  and what I worked with. I didn’t bother myself with possible paths and outcomes or even consider the idea of dying earlier then planned. I didn’t think about that because I didn’t know. I was just sad. very sad.

We found out on Wednesday and were due to fly out to Italy early in the morning the next day. After some deliberation and consulting the doctor (as well as the bride and groom) we decided to go. Next Monday would be biopsy day so in the mean time I could do what ever I wanted. On the plane to Italy I came up with the concept for this blog: “To inform, to Share and hopefully help a little”. That worked out pretty well.

We went to Italy for the wedding of Luca and Jeanine, Two long time friends of ours. The wedding and the hotel where we stayed were all in one beautiful location in Piedmont. The venue was a refurbished old villa run by an English Couple.  It was very classy and cozy and a very nice way to get used to some very bad news. The prosecco helped, the attention and love from good friends helped… and the shopping at an Italian outlet mall helped (a lot…8-)

Back home the next mission was to find out what kind of cancer I had. After a couple of tests they finally knew what I had. A Mediastinal Germ Cell Tumor. It is a type of testicular cancer. Key difference is that my tumor is NOT down there but between my lungs. A very rare type. With this news the treatment plan was also known: CHEMO. I was to have 4 rounds of BEP chemo therapy. It would mean 6 days in the hospital and two weeks at home after which I would start the new round with another 6 day stay. It would be a 4 month trip and physically comparable to professional sports. Its a very heavy treatment. And I would lose my hair. The week leading up to this I had a BBQ with close friends and family.

I prepared well and was as ready I was going to be.

The day that I went in for my first chemo treatment started very well. We first went to the notary to officially sign the documents to start SPRXmobile, together with Claire, Raimo, and Yuri. That was a good distraction. And I was late for the hospital.

The hospital wasn’t fun. I had to have an IV in me at all times (which took them 3 tries before finding a good vein) and I shared a room with 3 others. I was ready to go at it but broke the third day after 2 nights of hardly sleeping, massive fluid retention and just dealing with all the crap form the previous weeks. You can only take so much.

What did help was all the attention I got. That was REALLY amazing. So many people reached out. My blog was becoming very popular and through twitter I was in continuous contact. I was always online. To keep track of all the love @michielb made me the River of Love where I could see what people were sending me. I also started to make a video diary. Here is the one where @vincente is showering me with gadets and does a good interview:

The video high light of the first hospital stay was catching mice on camera in the Hospital. I never heard anything about it from the hospital. I did mention it to the staff.

The best thing about staying in the Hospital was coming home. That was weird. Its hard to describe. I mostly remember being very deeply happy being home. And being tired. Very deeply tired. In the hospital you know that you are sick. Its a sick place. But at home you have your normal routines. I wasn’t sick there, or at least, I wasn’t used to being sick there.

Most fun moment was cutting my hair off. It was starting to fall out and it is better to cut off yourself then to wait for it to fall off. Enjoy the video:

During the last part of this first round I still had some energy and went to the Radiohead concert with @birdman and @vangeest. I enjoyed that. Before I went back in for round 2 @vincente did another video interview with me:

In the first round of Chemotherapy I  learned some valuable things. Lori summed up our 9 key lessons:

Lesson 1: Sugar + Chemo= Nausea
Lesson 2: Visitors are great, in moderation
Lesson 3: For Maarten’s well being, Being connected is everything
Lesson 4: Take whatever medicine you can, when you can
Lesson 5: Take Control when you can by shaving your head
Lesson 6: Side effects suck!
Lesson 7: Ask for help/or learn how to accept it
Lesson 8 : Never underestimate the value of Bubby-love (our cat)
Lesson 9 : With our friends and family there to pull us through, we are guaranteed success

I’d now like to add a 10th one: Being Bald isn’t Ugly.

img_2834

The second round in the hospital was better than the first one. I knew the routine, what to do and what to expect. And Lori got me the new iphone. That helped too!

After I got home after the second run and I gained some of my energy back we went for a long weekend to Delden, which is in the east of Holland where I grew up. I hadn’t been there for a long time. It was great visiting all the familiar places and eating great food.

The biggest news after round two, the half way mark is that my tumor had shrunkby almost 50%. That meant that the treatment was working.

First scan

50% smaller!

The third round was ok. I had even more experience now. I just sat it out and made the most of it. The news that the treatment was working was helpful too. I was thinking about hospital business opportunities, learned to dance and had some good croissants.

Overall I was weaker too. That’s how it works. Looking back I see I blogged less and didn’t make as many videos. Highlights were following the Dutch women’s hockey at the Olympics, hearing that MoMo was doing an Auction for the dutch cancer fund and counting down the days remaining

And then it was over. Well, the treatments were over. I was a mess physically. The Monday after I came home MoMo was on. That was funny. The last momo was just before I found out. And now I was done and there was the next one.

They made a nice show of me not being there and the cancer fund made more then 1200 euros:

To celebrate that my chemo was over we invited everyone to join us at the Stout straat dinner. We made a merry party of 20, and had a great time. I was even hung over from the booze instead of the chemo!

The best decision this year was not only starting my own company. It was also getting a kitten.She was born on July 11th and on September 12th we brought her home. We named her Pebbels and she was (and still is) ADORABLE:

The chemo being over gave me a HUGE boost of energy. I used this at the PICNIC conference. For three days I just sat in the sun and enjoyed being back. And everybody was happy to see me back too. It was thrilling.

Now that the chemo was done we were anxious to know what was next. We knew that Theo shrunk and that it was going well. But we didn’t know how well. This took a while so we took our chances and flew to my Uncles house in the south of France. Lori and I both needed some chill time and to get away from it all. We did.

UPDATE: So what was good about this part cancer of the year?

  • The clarity and focus the cancer gave me (it’s starting to disappear now)
  • The BBQ with my parents and friends
  • @josk always being there with Anita
  • @michielb making the River of Love
  • @markies organizing the twiterazi
  • Marc & Sam always being there for the last hospital day
  • @vincente with his video and gadgets (not many people know or see that he is SUCH a giver!)
  • @all the twitterazi
  • Ellen in DC’s comments
  • Al the visitors in the hospital
  • The nurses (especially the gadget nurse)
  • Lori’s love & care
  • The arrival of Pebbels
  • Our trips to Italy, Delden and France (more about that later)
  • All the good dinners I had
  • That I have the best form of cancer you can get
  • The reactions at Picnic
  • Al the media attention me and my blog got

Is that enough?

§§ end of Part 2 §§

Now that sounds weird, does it not? Let me elaborate and do a year in review. In two parts. This is part 1.

The year started with Lori and me coming back from a very good California trip. One of the high points being the last week at Riley’s in Bolinas. Such a great guy and such a great place.  Back in Holland I was just in time for new years drink with all my interactive and twitter friends at the “IPAN, 212 & IAB borrel”. I made a little video there:

Next up was me being part of the Twitter Bowlr Allstar team almost winning the Bowlr cup. We even made a viral video:

The day after Bowlr was also very significant. We had a workshop with the MoMo team to understand what we started and se what we could do with it. That day the first seeds for our own company SPRX were planted.

Also the first MoMo of the year was in January which again was sold out. We had a very impressive keynote by Joe Pine about the Multiverse. Watch it again and tell me in the comments if you can name all 8 worlds..

In the mean time I was stil working at RapidSugar doing a great project for Karwei among other things. Also I was editing and publishing the video interviews I made at the Le Web conference in Paris . It is a series called Learning from the Future. In the interviews I ask 3 questions: who the person is, what 3 changes/trends/movements they see the coming year and which of those is still present in 5 or 10 years. I had the opportunity to interview some really interesting people:

Some more:

Meanwhile at RapidSugar I was developing the idea of OpenProfile. OpenProfile is an VRM inspired identity service concept which in my view could be the next strategic scourse for a company like RapidSugar.

We did MoMo #5 in March about Mobile Banking. Again a full house.  We thought Finance and banking would be boring and not much people would show up. We were wrong 😎

Me & Dutchcowgirl Marjolijn

Me & Dutchcowgirl Marjolijn

April started with the NextWeb. A conference here in Amsterdam. I had the honor of accepting on behalf of DutchCowboys the award or best weblog. Dutchcowboys is an interactive marketing weblog I write for. At the event I hung out with my tweeps (friend from twitter) and also made two more Learning from the Future video’s:

Learning from the Future at the Next Web with Chris Saad
Learning from the Future with Nova Spivack

Somewhere in April I made my decision to leave RapidSugar and start SPRXmobile with Claire, Raimo and Yuri. SPRXmobile was to be a modern agency helping other companies get on the Mobile web. It was a big decision. I never started a company before or gave up a job. And I had such a great time at RapidSugar yet it was time to leave too.

Because I wasn’t doing anything big (NOT) we ended April by going to Spain and eating at El Bulli. A restaurant that has been nominated the best restaurant in the world 4 times. Yes it was expensive but soooooo worth it. Lori and I added a week to chill and relaxed over there.

Back home SPRX was launched with an amazing borrel with lots of people and with great warm weather. Click on the picture to see the video.

June was to be my last month at RapidSugar. It was also the month that SPRX got loads of business and that my personal favourtite momo happened with a keynote by Doc Searls.

And it was the month I found out I had cancer.

That was big.

It when i started this blog.

Looking back it still is so sureal. Most of it happend in one week. I summed it up before. Lori put it as follows:

My beloved husband went to the doctor yesterday morning because he had a cough that wouldn’t go away and was having trouble breathing. After being sent to the hospital for an X-Ray, CT Scan and bloodwork, turns out he has a tumor the size of two fists sitting between his lungs on top of his heart.

Now this is part of me. It is part of my journey.

§§ end of Part 1 §§

We just got back from the oncologist who told us that he wants to start watchful waiting. So for now its over. Next action is a CT scan in 3 months…. IN THREE MONTHS!!! What do I do now?

Here is the video I made just after we heard it.

We can hardly believe it and are in a bit of shock. A good one, but still in shock. So much has happened, so many good things and so many nasty things. And now they tell us that this part of the journey is over. That we can get out and stretch our legs. So weird. Tomorrow I will understand this better 😎 As usual it takes me a day to ‘get’ news.

Theo shrunk from 21 x 59 x 39 mm to 17 x 54 x 36 mm.

Here is the scan they did, you wont see much unless you are a radiologist but still it’s cool to see 😎

image002

For the fans here is the write up in Dutch from the radiologist:

CT Thorax

klinische informatie:
Follow-up mediastinaal seminoma +2 longafwijkingen.
Regressie?

CT-thorax:
CT scan van thorax volgens het longtumor protocol. Onderzoek vergeleken met 12/09/2008.

Bekende massa in het anterieure mediastinum heeft een AP-diameter 17 mm, voorheen 21 mm (serie 1 ima 37). In het coronale vlak meet de massa 36 x 54 mm, voorheen gemeten 59 x 39 mm (coronaal ima 30).
Lymfklier rechts paratracheaal 12 mm (ima 14), conform voorgaande twee scans. Verder mediastinaal meerdere opvallende klieren, qua korte as diameter niet pathologisch vergrote echter wel groter dan op voorgaande CT scan.
Gynaecomastie beiderzijds (ima 46) op voorgaande scan was hier slechts lichte aanzet toe zichtbaar.
De nodulaire verdichtingen zichtbaar op de fissuur major meten 7 respectievelijk 3 mm, voorheen 6 respectievelijk 2 mm, gezien meetfout beeld ongewijzigd.
Geringe atelectase van posterieur gelegen longdelen (ima 41 axiaal, 88 sagittaal).

Normaal beeld van bovenbuiksorganen.
Intacte ossale structuren.

Conclusie:
De massa in het anterieure mediastinum is kleiner dan op voorgaande scan.
Een lymfklier rechts paratracheaal met korte as diameter 12 mm, conform voorgaande scans.
Longlaesies in essentie ongewijzigd.
Gynaecomastie beiderzijds.

[try not to make your own conclusions from this if you don’t understand]

So he is still there. Also I still have some lesions on my lungs. My onc also mailed Einhorn inform and to make sure we are on the right track ( UPDATE: Einhorn agreed with the new path). The big journey is definitely not over. But the main first part is. In three months I’ll go back for another scan to see how it is then.

In the coming months I’ll work on getting myself back on the road. This afternoon I have an appointment with my GP for some minor ailments due to the chemo and to get some advice to efficiently get back on track.

Thanks for all your support. I really helps!

Today I had my CT scan. Last one was three months ago. With this new one they will be able to determine the difference between then and now. Based on that we know how bad its going with Theo.

If it is really bad for Theo its really good for me. It means I’ll start watchfull waiting where we going in to scheduled scans.

Of course I made some video too:

The biopsy they took the other week was inconclusive. They only found lung tissue. Originally in this scenario the onc wanted to now do a better biopsy under total anesthesia. But he won’t.

We haven’t done a CT scan for 3 months and he thinks it is worth it to wait with the second biopsy to see what the CT scan says. He has a feeling it might have shrunk and that all that has been showing up is scar tissue. I agree. Dr. Einhorn also said that we wouldn’t find anything.

The CT scan is planned for next week and the outcome will be know on Monday December 15th.

It all happened really fast today. Such a ‘big’ meeting which was over so quick. And has such a high impact. I dont know how I feel. But it really looks good as i have a bigger chance of not going back for more chemo and being home for x-mas. Watchful waiting might begin now.

Here is the short Seesmic video I made just after the news.

Call me dramatic, but tomorrow I might hear if the rest of my life starts again. Ok, it starts every day, yet I am nervous for the meeting tomorrow. My oncologist will tell me what they found in the broncoscopy. As said there are three outcomes:

  • nothing, so watchful waiting will start
  • something, so they will start a new chemo round (which I won’t do until after a thorough and smart second opinion)
  • inconclusive, so they will do a more invasive biopsy under total anesthesia (which I won’t do until after a thorough and smart second opinion)

verhagenIn the mean time its nice to know that the Dutch Secreatary of State Maxime Verhagen is in the know about my journey and hip to twitter. Yesterday there was a meeting with him and some twitterazi (Dutch article) and among lots of other things  this blog and my twittering was named as an example of open communication.