Ik wil graag jullie aandacht vragen voor het volgende filmpje:
You Tube: Beste 16-jarige ik
Deel het het met andere en ga naar www.Facebook/stmelanoom voor meer informatie. Zeker voor jullie in Singapore is dit van levensbelang! Smeer in. Dit is een vorm van kanker waar jezelf meer invloed op hebt. Door jezelf in te smeren verminder je de kans om het te krijgen.
Een hele dierbare vriendin van ons heeft deze vorm van huidkanker. Hoewel zij nu schoon is, zal ze tot het einde der dagen, om de zoveel maanden, CT scan's en MRI's scan's moeten ondergaan. Dit is om er zeker van te zijn dat als de ziekte terugkomt ze er op tijd bij zijn; en dan nog is er geen garantie....
Ik heb enorm veel respect en diepe bewondering voor haar en de manier hoe zij, samen met haar man, deze ziekte heeft aangevallen. Zij zijn een voorbeeld voor ons. Zij hebben mij en Suzanne in Juni laten inzien dat positiviteit en strijdlust twee hele belangrijke factoren in de aanval tegen kanker. Zonder deze twee ingrediënten zal je de strijd zeker verliezen. We hebben enorm veel houvast en steun van hun gekregen sinds het begin van mijn strijd tegen kanker en blijven die steun en houvast krijgen. Hij is mijn guardian angel en zij mijn lotgenoot en meest recente chaperonne. Heel veel dank hiervoor.
Stay strong. Smeer in.
I will beat the statistics.
Berend
I would like to draw your attention to the following video:
Beste 16-jarige ik
Share it with others and go to www.Facebook / stmelanoom for more information. Especially for the people in Singapore, this is vital! Use son-block. This is a form of cancer where you can have more influence in reducing the odds of getting it.
A very dear friend of ours has this form of skin cancer. Although she is now clean, she will need to undergo CT scans and MRI scans every few months for the rest of her life. This is to ensure that if it comes back they are on time and even then there is no guarantee ....
I have enormous respect and admiration for her and the way she and her husband fight this decease. They are an example to us. They got me and Suzanne in June to see that a positive and fighting attitude are two very important factors in the attack against cancer. Without these two ingredients, you will surely lose the battle. We have received a lot of guidance and support from them since the beginning of my battle with cancer and continue to get support and guidance. He is my guardian angel and she is my companion and was my most recent chaperone. Many thanks for this.
Stay strong. Use sun block.
I will beat the statistics.
Berend
donderdag 21 maart 2013
woensdag 20 maart 2013
Een nieuw record - A new record
16 weken na het einde van de zware chemo, 34 weken na het starten van chemo en 38 weken na het begin van de ellende ben ik qua tumor markers op een gezond niveau. Het niveau van de CEA marker zit statistisch gezien bij gezonde mensen tussen 0 en 6. Gisteren zat hij op 5 bij mij. Betekent dit dat ik gezond ben.....helaas nee, maar het geeft wel hoop en hoop doet leven.
Ik was enorm blij toen ik het hoorde maar ik had ook mijn twijfels. Je wil een gat in de lucht springen van blijdschap bij het horen van het goede nieuws maar je brein neemt toch een loopje met je. Mijn eerste vraag aan de dokter was of je ook lage tumor markers kan hebben maar wel kanker. Deze werd helaas positief geantwoord. Het ene moment voel je allemaal twijfels...zouden de bloedbuisjes gemixed zijn met die van anderen? Kan het niveau voor een grote uitbraak tijdelijk verlaagd zijn? Over 3 weken zit het weer veel hoger......Het andere moment geloof je in de sterkte van jezelf. Zou ik toch die statistieken niet alleen gaan verbreken maar gewoon gaan verpletteren? Ja!
Het rare is dat ik altijd weer blij ben als ik weer aan het infuus zit en mijn chemo pillen slik. Stilstaan kan ik niet, alleen maar aanvallen. Kei hard de beuk erin. De extra week rust, er zat dus 4 weken tussen de laatste 2 kuren ipv 3, gaf mij een onrustig gevoel. Ik ben blij dat ik weer in de 3 weken stramien zit.
Een ding weet ik zeker.....ik ga door met mijn pluk de dag strategie in combinatie met de nodige hoogtestages en sportieve prestaties. We gaan op mei-vakantie naar de VS 2 weken, de zomer vakantie begint ook al vorm aan te nemen met een weekje in de alpen en weekje in Agriturismo's, binnenkort met pasen naar Domburg, de dag na mijn volgende uitslag (CT scan - 8 April) met mijn broertje naar Man U tegen Manchester City....stoeltjes in het vak aan het veld!...daarna een familie-wieler-wedstrijd in Maastricht, die ik organiseer. In Juni met de Free ride groep naar de Mont Ventoux. Al met al genoeg om naar uit te leven!
Hieronder de link nog naar de filmpjes van vorige week in Chamonix.
Voor diegene die het nog niet weten...ik heb tegenwoordig een baard; voor de echte ruige berg look.
Deze dagen geniet ik van de aandacht van mijn kinderen. De liefheid en humor van Eline, het rebelse en speelse van Oene en de wijsheid en warmte van Fleur. De avond voor de uitslag ben ik altijd wat gespannender dan anders. Oene miste zijn moeder, Eline refereerde naar de dood, het werd me even teveel zonder Suzanne. Verdrietig bracht Fleur naar bed. Zij vroeg aan mij waarom ik verdrietig was....ik vertelde haar over het feit dat ik weer naar het ziekenhuis moest voor testen. Fleur heeft mij toen getroost, ze zei dat zij zeker wist dat ik een goeie uitslag zou hebben. Ze had helemaal gelijk. Wat ben ik trots op mijn kinderen maar zou ik ze dit graag besparen.
Op naar 8 april, als ik weer bespreking heb van mijn volgende CT scan (4 april). De beuk erin.
Stay strong.
I will beat the statistics.
Berend
16 weeks after the end of the heavy chemo, 34 weeks after the start of chemotherapy and 38 weeks after the start of the misery my tumor markers are within a healthy level. For healthy people the level of the CEA marker is statistically observed to be between 0 and 6. Yesterday my level was at 5. Does this mean that I'm healthy ..... unfortunately no, but it gives hope and hope makes me live.
I was delighted when I heard it but I had my doubts. When getting such news you want to jump a hole in the sky but the thing is that your brain will still take you for a ride. The first question I asked the doctor was whether it was also possible to have low tumor markers but still have cancer. The answer was, unfortunately, affirmative. One moment you feel only doubts ... the blood tubes were mixed up with those of others? Perhaps the level can be lower just before a major outbreak. In about three weeks the levels will be much higher ...... The other moment you believe in the strength of yourself. Will I beat the statistics or will I crush them? Yes, I will crush them!
The weird thing is that I'm always happy when I get have an IV in me and am taking my chemotherapy pills. I can jsut sit still, I need to attack. Put the pedal to the medal. The extra week of rest this time, there were 4 weeks between the last 2 cycles instead of 3, gave me an uneasy feeling. I am happy to be back in three weeks pattern.
One thing I know for sure ..... I will go on with my cherish the day strategy in combination with the necessary altitude training and sports performance. We will go on May holiday to the U.S. two weeks, the summer holiday is already taking shape with a week in the Alps and week in Agriturismo's in Italy, during eastern were off to Domburg, the day after my next results (CT scan - 8 April) I will go with my brother to Man U against Manchester City .... seats near the pitch! ... then a family cycling race in Maastricht, which I am organizing. In June the Free ride group will join me to the Mont Ventoux. All in all, plenty to look forward!
Below are the links to the videos of last week in Chamonix.
For those who do not know ... I have a beard now, for the real rugged mountain look.
These days I enjoy the attention of my children. The sweetness and humor of Eline, the rebellious and playfulness of Oene and the wisdom and warmth of Fleur. The night before the outcome I am always a bit stressed. Oene missed his mother, Eline was referring to my possible death, it was just too much for me without me Suzanne. I was sad when I was bringing Fleur to bed. She asked me why I was sad .... I told her about the fact that I had go to the hospital for tests again. Fleur comforted me, she said that she was sure that I would have a good outcome. She was absolutely right. I'm so proud of my kids but I am so sad that they have to go through this.
On the 8th of April I have my next CT scan (April 4) outcome. I am ready.
Stay strong.
I will beat the statistics.
Berend
donderdag 14 maart 2013
Huisman - Houseman
Ik ben gisteren avond teruggekomen van 4 dagen keihard skiën. Binnenkort zal ik een aantal filmpjes van deze meest recente ski-avontuur publiceren.
Hierbij al een kleine samenvatting. Het was geweldig. We hadden geluk met het weer en de sneeuw, een ontzettend leuke groep (mijn zus(-je), mijn manager/trouwste belangenbehartiger en een ouwe vriend aka de Oostenrijk-specialist - jammer voor hem dat we slechts in Zwitserland, Frankrijk en Italië geskied hebben,) en goeie betrouwbare berg gidsen.
Dag 1 was in-skien in Morgins/Portes du Soleil - zelden heb ik zoveel van het gebied gezien, de Combe de Morgins, ook wel Pierre Plate (platte steen) genoemd (zie vorige filmpjes), was voor de meeste onder ons het heftigste stukje van die dag en misschien wel van alle dagen. Aan het einde van dag 1 zijn we naar Chamonix gereden, het Free-ride mekka van de wereld, een stad vol adrenaline aan de voet van de majestueuze Mont Blanc.
Dag 2 begon anders dan verwacht, het weer viel tegen, dus weken we uit naar Courmayer aan de andere kant van de Mont Blanc tunnel in Italië. Daar hebben we 2 fantastische runs gemaakt van 2600-3000m naar 1000m, waarbij we lange traverses maakten, 2 colletjes beklommen, 1 ski zijn kwijtgeraakt in de diepe sneeuw aan het begin van de eerste run (hulde voor mijn zusje die op 1 ski het grootste gedeelte van de eerst run naar beneden heeft geskied terwijl zij niet haar ski was kwijtgeraakt), fantastisch Italiaans geluncht hebben en gewoon genoten hebben van een top dag.
Dag 3 was een rustdag in Morgins. Van de 27 dagen (!) die ik dit seizoen geskied heb, was dat de dag dat we het laatste gestart zijn, pas om 10.30. Aan het einde van de dag zijn we na een etentje met mijn schoonouders en hosts in Morgins (dank nogmaals) weer naar Chamonix gereden.
Dag 4 was de Vallee Blanche dag. We zijn vanaf de Aiguille du Midi (3842 m) naar het begin van de gletsjer geskied aan de voet van de Mont Blanc. Erg indrukwekkend, zeker het eerste stukje over de graad naar beneden. De lift naar boven is ook een ding. Iedereen ziet er nogal profie uit, rugzak, harnas, pikhouwel, touwen, lawine airbags etc....uiteindelijk deden we niet onder voor de gemiddelde berggenoot. Boven aangekomen zatten we boven de wolken, met alleen maar 4-duizenders om ons heen! Een uitgebreide foto reportage zal nog volgen. Het was genieten tot en met. Van de voren voel je de spanning en komt steeds de vraag op: Waarom doe ik dit? Maar het was fantastisch. Wat voel je je klein en kwetsbaar tussen die witte stenen reuzen. En wat heb ik respect voor de Oostenrijk specialist die zijn grenzen behoorlijk heeft verlegd deze dagen.
I came back yesterday evening from four days of great intensive skiing. I will publish some videos of this most recent ski adventure in the next view days.
A small summary below. It was great. We were lucky with the weather and the snow condition, we were with a very nice group (my (younger) sister, my manager / staunchest advocate and an old friend aka Austria-specialist - sorry for him that we only skied in Switzerland, France and Italy) and we had reliable and good mountain guides.
Day 1 was warm-up-skiing in Morgins / Portes du Soleil - I have rarely seen so much of the area, the Combe de Morgins, also called Pierre Plate (flat stone - see previous movies), was for most of us the heaviest piece of that day, and perhaps of all days. At the end of Day 1 we drove to Chamonix, the Free-ride mecca of the world, a city full of adrenaline at the foot of the majestic Mont Blanc.
Day 2 began differently than expected, the weather was not good enough, so we changed plans and went to Courmayer at the other side of the Mont Blanc tunnel in Italy. We made 2 fantastic runs from 2600-3000m to 1000m, including some long traverses, climbing of 2 cols, losing of 1 ski in the deep snow at the beginning of run 1 (tribute to my sister who skied on 1 ski for most of the first run down while she wasn't the one who lost her ski), ate some fantastic Italian lunch and just enjoyed a great day.
Day 3 was a rest day in Morgins. Of the 27 days (!) that I've skied this season, it was the day in which I started the latest with skiing (10.30). At the end of the day, after a dinner with my in-laws and hosts in Morgins (thanks again) we drove back to Chamonix.
Day 4 was the Vallée Blanche day. We skied from the Aiguille du Midi (3842) down to the end of the glacier at the foot of Mont Blanc. Very impressive, especially the first part when walking downwards over a ridge. The lift to the top is also quite impressive. Everybody looks quite professional with backpack, harness, hammer, ropes, avalanche airbags etc. ... in the end we were as professional as the others. The end of the lift was above the clouds with only mountains of at least 4000m around us! An extensive photo report will follow. It was great. Beforehand you can feel the tension and the following question continuously pots up: Why am I doing this? But it was fantastic. How small and vulnerable do you feel among those white stone giants. I have great respect for the specialist from Austria who pushed his boundaries during this trip.
This is the end of the ski season 2013, I am ready and looking forward to 2014, with at least as many beautiful ski moments! I will need to prepare my race bike soon for the new cycling season .... I am sure that I am on par in terms of doping with your average professional cyclist.
Suzanne left for Houston this morning, to one of her best friends. Too bad I'm not joining, but how wonderful for her that she can just leave the misery behind her. I hope and am sure that she will enjoy herself to the fullest. As of now I am single parent - houseman. Lovely quality time with the kids. I'm really looking forward to it. It takes some effort getting used to standing on my own feet. A lot of hassle and fuss. But I can handle it. Who would have expected this a few months ago! Nice to see that the kids also like it.
Suus has cooked for 2 days, the rest of the time I will cook myself or eat at friends / family. For the Singaporean men, watch out, I'm here without Beverly, Marie, Marie-Grace, Jade, Amy, etc.
Tuesday I have to go to the hospital. Blood tests and chemo. I've really not looking forward to it. Can not imagine that there is bad news, but you can not rule it out .... it's been 16 weeks since I've stopped the heavy chemo ... do I feel something in my neck? Maintenance chemo and skiing are hopefully an equally effective alternative as the heavy chemo.
Stay strong.
I will beat the statistics.
Berend
Hierbij al een kleine samenvatting. Het was geweldig. We hadden geluk met het weer en de sneeuw, een ontzettend leuke groep (mijn zus(-je), mijn manager/trouwste belangenbehartiger en een ouwe vriend aka de Oostenrijk-specialist - jammer voor hem dat we slechts in Zwitserland, Frankrijk en Italië geskied hebben,) en goeie betrouwbare berg gidsen.
Dag 1 was in-skien in Morgins/Portes du Soleil - zelden heb ik zoveel van het gebied gezien, de Combe de Morgins, ook wel Pierre Plate (platte steen) genoemd (zie vorige filmpjes), was voor de meeste onder ons het heftigste stukje van die dag en misschien wel van alle dagen. Aan het einde van dag 1 zijn we naar Chamonix gereden, het Free-ride mekka van de wereld, een stad vol adrenaline aan de voet van de majestueuze Mont Blanc.
Dag 2 begon anders dan verwacht, het weer viel tegen, dus weken we uit naar Courmayer aan de andere kant van de Mont Blanc tunnel in Italië. Daar hebben we 2 fantastische runs gemaakt van 2600-3000m naar 1000m, waarbij we lange traverses maakten, 2 colletjes beklommen, 1 ski zijn kwijtgeraakt in de diepe sneeuw aan het begin van de eerste run (hulde voor mijn zusje die op 1 ski het grootste gedeelte van de eerst run naar beneden heeft geskied terwijl zij niet haar ski was kwijtgeraakt), fantastisch Italiaans geluncht hebben en gewoon genoten hebben van een top dag.
Dag 3 was een rustdag in Morgins. Van de 27 dagen (!) die ik dit seizoen geskied heb, was dat de dag dat we het laatste gestart zijn, pas om 10.30. Aan het einde van de dag zijn we na een etentje met mijn schoonouders en hosts in Morgins (dank nogmaals) weer naar Chamonix gereden.
Dag 4 was de Vallee Blanche dag. We zijn vanaf de Aiguille du Midi (3842 m) naar het begin van de gletsjer geskied aan de voet van de Mont Blanc. Erg indrukwekkend, zeker het eerste stukje over de graad naar beneden. De lift naar boven is ook een ding. Iedereen ziet er nogal profie uit, rugzak, harnas, pikhouwel, touwen, lawine airbags etc....uiteindelijk deden we niet onder voor de gemiddelde berggenoot. Boven aangekomen zatten we boven de wolken, met alleen maar 4-duizenders om ons heen! Een uitgebreide foto reportage zal nog volgen. Het was genieten tot en met. Van de voren voel je de spanning en komt steeds de vraag op: Waarom doe ik dit? Maar het was fantastisch. Wat voel je je klein en kwetsbaar tussen die witte stenen reuzen. En wat heb ik respect voor de Oostenrijk specialist die zijn grenzen behoorlijk heeft verlegd deze dagen.
Dit is het einde van het ski-seizoen 2013; op naar 2014 met minimaal net zoveel mooie ski-momenten! Binnenkort mijn racefiets uit het vet halen voor het wielerseizoen....ik doe kwa doping niet onder voor een gemiddelde professionele wielrenner.
Suzanne is vanochtend naar Houston vertrokken, naar een van haar beste vriendinnen. Jammer dat ik niet mee ben, maar heerlijk voor haar dat ze even de ellende achter zich kan laten. Ik hoop en weet zeker dat ze met volle teugen gaat genieten. Vanaf nu ben ik single parent - huisman. Heerlijk quality time met de kinderen. Ik heb er vreselijk veel zin in. Het is even wennen om er helemaal alleen voor te staan. Geregel en gedoe. Maar ik kan het aan. Wie had dat verwacht een paar maanden geleden! Leuk om te zien dat de kids er ook zin in hebben.
Suus heeft voor 2 dagen gekookt, de rest van de tijd ga ik zelf koken of bij vrienden/familie eten. Voor de Singaporese mannen, let wel op, ik zit hier zonder Beverly, Marie, Marie-Grace, Jade, Amy etc......
Dinsdag naar het ziekenhuis. Bloedtesten en chemo. Daar heb ik nou helemaal geen zin in. Kan me niet voorstellen dat er slecht nieuws komt, maar je mag het niet uitsluiten....het is al 16 weken geleden dat ik gestopt ben met de zware chemo...voel ik nou iets in mijn nek? Ouderhouds chemo en skiën zijn hopelijk een net zo effectief alternatief als de zware chemo.
Stay strong.
I will beat the statistics.
Berend
I came back yesterday evening from four days of great intensive skiing. I will publish some videos of this most recent ski adventure in the next view days.
A small summary below. It was great. We were lucky with the weather and the snow condition, we were with a very nice group (my (younger) sister, my manager / staunchest advocate and an old friend aka Austria-specialist - sorry for him that we only skied in Switzerland, France and Italy) and we had reliable and good mountain guides.
Day 1 was warm-up-skiing in Morgins / Portes du Soleil - I have rarely seen so much of the area, the Combe de Morgins, also called Pierre Plate (flat stone - see previous movies), was for most of us the heaviest piece of that day, and perhaps of all days. At the end of Day 1 we drove to Chamonix, the Free-ride mecca of the world, a city full of adrenaline at the foot of the majestic Mont Blanc.
Day 2 began differently than expected, the weather was not good enough, so we changed plans and went to Courmayer at the other side of the Mont Blanc tunnel in Italy. We made 2 fantastic runs from 2600-3000m to 1000m, including some long traverses, climbing of 2 cols, losing of 1 ski in the deep snow at the beginning of run 1 (tribute to my sister who skied on 1 ski for most of the first run down while she wasn't the one who lost her ski), ate some fantastic Italian lunch and just enjoyed a great day.
Day 3 was a rest day in Morgins. Of the 27 days (!) that I've skied this season, it was the day in which I started the latest with skiing (10.30). At the end of the day, after a dinner with my in-laws and hosts in Morgins (thanks again) we drove back to Chamonix.
Day 4 was the Vallée Blanche day. We skied from the Aiguille du Midi (3842) down to the end of the glacier at the foot of Mont Blanc. Very impressive, especially the first part when walking downwards over a ridge. The lift to the top is also quite impressive. Everybody looks quite professional with backpack, harness, hammer, ropes, avalanche airbags etc. ... in the end we were as professional as the others. The end of the lift was above the clouds with only mountains of at least 4000m around us! An extensive photo report will follow. It was great. Beforehand you can feel the tension and the following question continuously pots up: Why am I doing this? But it was fantastic. How small and vulnerable do you feel among those white stone giants. I have great respect for the specialist from Austria who pushed his boundaries during this trip.
This is the end of the ski season 2013, I am ready and looking forward to 2014, with at least as many beautiful ski moments! I will need to prepare my race bike soon for the new cycling season .... I am sure that I am on par in terms of doping with your average professional cyclist.
Suzanne left for Houston this morning, to one of her best friends. Too bad I'm not joining, but how wonderful for her that she can just leave the misery behind her. I hope and am sure that she will enjoy herself to the fullest. As of now I am single parent - houseman. Lovely quality time with the kids. I'm really looking forward to it. It takes some effort getting used to standing on my own feet. A lot of hassle and fuss. But I can handle it. Who would have expected this a few months ago! Nice to see that the kids also like it.
Suus has cooked for 2 days, the rest of the time I will cook myself or eat at friends / family. For the Singaporean men, watch out, I'm here without Beverly, Marie, Marie-Grace, Jade, Amy, etc.
Tuesday I have to go to the hospital. Blood tests and chemo. I've really not looking forward to it. Can not imagine that there is bad news, but you can not rule it out .... it's been 16 weeks since I've stopped the heavy chemo ... do I feel something in my neck? Maintenance chemo and skiing are hopefully an equally effective alternative as the heavy chemo.
Stay strong.
I will beat the statistics.
Berend
vrijdag 8 maart 2013
Go Pro - Ski Movies
Met de nieuwe Go Pro camera gekregen van mijn vriendjes uit Singapore heb ik een aantal filmpjes geschoten. Met grote trots presenteer ik het resultaat! Alle 3 zijn kleine Tomba's, Giradelli's, Killy's en Vohn's! Ik moet erbij zeggen dat Eline een aantal dagen ziek was. Heel spijtig aangezien zij juist de eerste dagen de grootste leercurve meemaakte. In het Snowpark was zij diegene die het hoogste sprong! Zo hoog dat ik dacht...oh je.
Fleur: Een echte dare-devil, nergens bang voor!
Youtube: Fleur
Fleur: Een echte dare-devil, nergens bang voor!
Youtube: Fleur
Eline: Een echte danser op de skis die makkelijk snelheid maakt!
Oene: De Jumper...geen hobbel wordt er overgeslagen!
Suus & Berend: Een top dag!
Best stijl! Echt knap van Suzanne!
Berend: Deze video heb ik gemaakt voor mijn vriendjes uit Singapore. Een beetje dik aangezet.
Voor de 2013 Madagui gangers....Succes zondag. Meedoen is belangrijker dan winnen! Geniet van de omgeving, de pijn en de gezelligheid. Ik ben alweer skiën dit weekend!
Stay strong,
I will beat the statistics.
Berend
With the new Go Pro camera which I got from my friends from Singapore, I made a number of short movies. With great pride I present the results! All 3 kids are small Tomba's, Giradelli's, Killy's and Vohn's! I must admit that Eline was sick for several days during our holiday. Very unfortunate since she was making the greatest progress. In the Snowpark she was the one who jumped the highest! So high that I thought ... oh je..
Fleur: A real dare-devil, not afraid of anything!
Eline: A real dancer on the skis that makes easy speed!
Oene: The Jumper ... no hill is left untouched!
Suus & Berend: A great day!
Berend: I made this video for my friends from Singapore who gave me the camera. A little over the top.
For the 2013 Madagui goers .... Good luck Sunday. Participating is more important than winning! Enjoy the surroundings, the pain and the cosiness. I am gone skiing yet again this weekend!
Stay strong,
I will beat the statistics.
Berend
dinsdag 19 februari 2013
Alles goed - All Good
Goede bloedresultaten. Tumor markers weer naar all time low - 7 - reeds eerder gehaald in januari na skiën. Ik heb een week extra rust gekregen voor mijn handen. De pijn was nu continu; op een schaal van 1 op 10 een 4; eigenlijk was het een beetje ondraaglijk aan het worden. Ik kan mijn vingers amper nog strekken, er komt pus onder de meeste van mijn nagels vandaan, mijn huid is enorm dun, mijn handen dus enorm gevoelig en mijn vingers begingen op die van ET te lijken; met een extra dik laatste kootje....
Een week extra rust om ze te laten helen. Dit komt reuze goed uit want dan ben ik pillen vrij bij het skiën met mijn zusje en vriendjes. Vandaag wel aan de bevacizumab. Voelt altijd goed om iets tegen die verrekte kanker te doen. Vrijdag we vertrekken naar Zwitserland. Ik heb er reuze zin in.
Het blijft raar wat voor spel je hersenen met je spellen voordat je een uitslag hebt. Zondag ging ik vroeg naar bed omdat ik maandag chemo zou hebben. Toen ik het licht uitdeed en klaar was om te slapen bedacht ik me dat er iets niet klopte. De Nurse practioner waar ik een afspraak mee had werkt toch niet op maandag.......heb ik maandag wel chemo? Effe checken...niet dus. Lekker, Ik heb me vergist. Ik had een companion geregeld die mij om 730 zou ophalen, ik had het ook op mijn blog geschreven.... Chemo maakt meer kapot dan je lief is.....mijn hersencapaciteit gaat wel heel snel achteruit. Ik moet hier iets aan gaan doen.
Ik was gisteren reuze verdrietig van de spanning maar had toch uiteindelijk een goed gevoel. Oene en Eline waren al om 6 uur wakker vanochtend, ik ook, heerlijk met hun een uurtje in mijn bed gelegen. Wat is het leven dan toch mooi.
Stay strong
I will beat the statistics
Berend
Good blood results. Tumor markers back to all time low - 7 - I previously reached this level in January after the skiing holiday. They have given me an extra week of rest for my hands. The pain was now continuously, on a scale of 1 to 10 a 4; to be frank it starts to be unbearable. I can barely stretch my fingers, there is pus coming from under most of my fingernails, my skin is very thin, my hands are extremely sensitive and my fingers start to resemble that of ET, with an extra thick last phalanx.
An extra week of rest will let them heal. This good because I will be pill free when skiing with my sister and friends. Today I still go some bevacizumab. It always feels good to fight that damn cancer. Friday we leave for Switzerland. I'm really looking forward to some skiing.
It remains strange what game your brains plays with you before a blood test/CT scan. Sunday I went to bed early because I thought that I would have chemo on Monday. When I turned out the light and was ready to sleep I realized that something was wrong. The Nurse Practitioner with whom I had an appointment with does not work on Mondays....... Do I really have chemo tomorrow? A quick check...damn no, I had mixed up the dates. Not so nice, I had a companion who would pick me up at 730, I had written it on my blog .... Chemo destroys more than it should ..... my brain capacity is deteriorating very quickly. I need to do something about this.
I was sad yesterday in anticipation of the test of this morning but felt nevertheless pretty good. Oene and Eline were already awake at 6 am this morning, me to, it was a treat to have them in bed with me for almost an hour. Life can be great!
Stay strong
I will beat the statistics
Berend
Een week extra rust om ze te laten helen. Dit komt reuze goed uit want dan ben ik pillen vrij bij het skiën met mijn zusje en vriendjes. Vandaag wel aan de bevacizumab. Voelt altijd goed om iets tegen die verrekte kanker te doen. Vrijdag we vertrekken naar Zwitserland. Ik heb er reuze zin in.
Het blijft raar wat voor spel je hersenen met je spellen voordat je een uitslag hebt. Zondag ging ik vroeg naar bed omdat ik maandag chemo zou hebben. Toen ik het licht uitdeed en klaar was om te slapen bedacht ik me dat er iets niet klopte. De Nurse practioner waar ik een afspraak mee had werkt toch niet op maandag.......heb ik maandag wel chemo? Effe checken...niet dus. Lekker, Ik heb me vergist. Ik had een companion geregeld die mij om 730 zou ophalen, ik had het ook op mijn blog geschreven.... Chemo maakt meer kapot dan je lief is.....mijn hersencapaciteit gaat wel heel snel achteruit. Ik moet hier iets aan gaan doen.
Ik was gisteren reuze verdrietig van de spanning maar had toch uiteindelijk een goed gevoel. Oene en Eline waren al om 6 uur wakker vanochtend, ik ook, heerlijk met hun een uurtje in mijn bed gelegen. Wat is het leven dan toch mooi.
Stay strong
I will beat the statistics
Berend
Good blood results. Tumor markers back to all time low - 7 - I previously reached this level in January after the skiing holiday. They have given me an extra week of rest for my hands. The pain was now continuously, on a scale of 1 to 10 a 4; to be frank it starts to be unbearable. I can barely stretch my fingers, there is pus coming from under most of my fingernails, my skin is very thin, my hands are extremely sensitive and my fingers start to resemble that of ET, with an extra thick last phalanx.
An extra week of rest will let them heal. This good because I will be pill free when skiing with my sister and friends. Today I still go some bevacizumab. It always feels good to fight that damn cancer. Friday we leave for Switzerland. I'm really looking forward to some skiing.
It remains strange what game your brains plays with you before a blood test/CT scan. Sunday I went to bed early because I thought that I would have chemo on Monday. When I turned out the light and was ready to sleep I realized that something was wrong. The Nurse Practitioner with whom I had an appointment with does not work on Mondays....... Do I really have chemo tomorrow? A quick check...damn no, I had mixed up the dates. Not so nice, I had a companion who would pick me up at 730, I had written it on my blog .... Chemo destroys more than it should ..... my brain capacity is deteriorating very quickly. I need to do something about this.
I was sad yesterday in anticipation of the test of this morning but felt nevertheless pretty good. Oene and Eline were already awake at 6 am this morning, me to, it was a treat to have them in bed with me for almost an hour. Life can be great!
Stay strong
I will beat the statistics
Berend
donderdag 14 februari 2013
Even van me af schrijven - Releasing some steam by writing
Eindelijk iemand die iets positiefs zag in mijn casus. Mijn trouwste belangenbehartiger had nog 2 keer gevraagd of ze alle informatie hadden. Ja, zeiden. Ik had het ook nog gevraagd. Ik moest me geen zorgen maken; mijn casus was bekend. Ze hadden alle info die ze nodig hadden. Ze waren routinees in het weghalen van slokdarmen. 40 keer per jaar deden ze het. Ja, je kon prima zonder leven. Je moest enkel je eet patroon aanpassen. Je maag zou de functie van slokdarm overnemen. Een buis ipv een zak. Kleine hoeveelheden eten. Sporten zou geen probleem zijn. De operatie werd typisch met een robot uitgevoerd. Het zou over 7 weken kunnen, dat was genoeg tijd na de laatste chemo. Nee, ze hadden nog geen patiënten met zo erge uitzaaiing geopereerd; maar dat maakte niet uit. De norm was verschoven. Ja, ze hadden alle info, er moest enkel nog een PET CT scan gemaakt worden. Deze moest niet slechter zijn dan die van Juni dan zou opereren kunnen. Of ik zo snel mogelijk langs wilde komen om de arts te spreken. PET CT scan en uitslag kon nog voor mijn skivakantie geregeld worden. Tuurlijk ik kan morgen. Ik ben bij jullie om half vier. Dit was dinsdagmiddag 5 uur. Het gesprek duurde bijna een half uur. Suus ziek...wie moet er mee. Mijn ouders zouden alle kleinkinderen meenemen naar Ernst, Bobby en de rest, dus zij niet. Mijn trouwste belangenbehartiger kon tijd vrij maken. Mijn schoonzus kon me brengen.....alles was geregeld. Ik sliep goed maar kort dinsdagnacht. De dag vloog voorbij. Mijn schoonzus haalde me op. We waren ruim op tijd. Meer dan een een uur lieten ze ons wachten. Het gesprek ging goed. Alle vragen werden beantwoord. Die leek echt goed te gaan. Ja, andere ziekenhuizen hadden nee gezegd. Dat kon. Zij zagen het anders....zij waren de voorlopers. Mijn reactie op de chemo was uniek. Ja, het enige was dat ze toch nog niet de eerste PET CT scan uit juni hadden bekeken. Was nog niet gelukt. Of ik anders de foto's kon mailen daarvan. Tot waar de uitzaaiingen waren? Ja ergens laag in mijn darmen. Tot ongeveer mijn navel. Geen probleem zolang het niet lager was. Ik zou vandaag (donderdag nog gebeld worden). Er was geen enkele aanwijzing dat ik slecht nieuws zou kunnen krijgen. Om 13.10 belde de arts mij op. Ehh, hij had zich niet gerealiseerd dat mijn uitzaaiingen niet alleen rondom mijn slokdarm en darmen was. Mijn uitzaaiigen rondom de aorta, het hart, mijn alvleesklier etc ja dat was toch andere koek. Spijtig. Operatie is geen optie. Goverdomme........klootzakken. Ik ben geen speelbal. Jullie hadden toch alle info. Mijn trouwste belangenbehartiger en ik hebben verdomme een eigen protocol afgesproken om dit soort misstappen te voorkomen. Dat hadden we geleerd van de verschillende second opinions in December. Die hadden zo veel kracht gekost. Pas als de artsen confirmeren dat ze alle info hebben, dan pas kom ik in beeld. Daarvoor gaat al het contact via mijn trouwste belangenbehartiger. Hem is niets te verwijten. 2 keer is hem geconfirmeerd dat ze alles hadden (gezien). Gelukkig heb ik maar krap 48 uur met het idee rond gelopen dat we de oplossing hadden. Suus is nog steeds ziek, dus de kinderen en het runnen van de huishouding zijn een goeie afleiding. Maandag aan de slag. Ik ben nog meer gedreven dan voor dit euvel. Bring it on. De beuk erin.
Stay strong.
I will beat the statistics.
Berend
Finally someone who saw something positive in my case. My most loyal advocate had asked twice if they had all information necessary. Yes, they said. I also asked. I should not worry, they knew my case. They had all the information they needed. They were specialists in removing the oesophageal. They did it 40 times a year. Yes, you could well live without one. You just had to adjust your eating pattern. Your stomach would take over the function of esophagus. A tube instead of a bag. Small amounts of food. Sports would not be a problem. The operation was typically carried out with a robot. It would be done maybe already in seven weeks, that would be enough time after the last chemo. No, they had not operated on patients with similar severe metastasis, but that did not matter. The standard had shifted. Yes, they had all the info, it would only be necessary to do a PET CT scan. If this was no worse than that of June if would be a go ahead. If i could drop by as soon as possible to speak to the doctor. The PET and CT scan and results session could still be arranged before my skiing holiday. Sure I could drop by tomorrow. I'll be there at half past four. This was Tuesday 5 o'clock. The conversation lasted nearly half an hour. Suus was still sick ... who would accompany me? My parents would take all the grandchildren to a Dutch children show, so they could not do it. My most loyal advocate could make time. My sister in law could bring me ..... everything was arranged. I slept well but briefly Tuesday night. The day flew by. My sister in law picked me up. We had plenty of time. They let us wait for more than an hour. The interview went well. All questions were answered. It was to good to be true. Yes, other hospitals had said no. It happened. They saw it differently .... they were the forerunners. My reaction to the chemo was unique. Yes, the only thing was that still missing was the first PET CT scan in June had viewed. Or else I could mail them the pictures. To what level was the metastases? Eh....somewhere in my intestines up to the level of my navel. No problem as long as it was not lower. I would be called today (Thursday). There was no indication that I might get bad news. At 13.10 the doctor phoned me. Ehh, he had not realized that my metastases was not only around my esophagus and my intestines. My metastases are also around the aorta, my heart, my pancreas etc yes that was still different. They were sorry. Surgery is not an option. Goddamn ........ bastards. I'm not a plaything. You said you had viewed all the info. Worst of all my most loyal advocate and I devised our own protocol to prevent these kind of mistakes from happening. We had learned it the hard way in December with all the second opinions. They cost a lot of energy. Only when the doctors confirm that they have all the info, then I come into the picture. Beforehand all contact go through my most loyal advocate. He is not to blame. They confirmed to him twice that they had viewed everything. Luckily I only walked around for 48 hours with the idea that we had the solution. Suus is still sick, so the kids and running the household are a good distraction. Monday my next chemo. I'm even more motivated than before Tuesday. Bring it on. I am ready.
Stay strong.
I will beat the statistics.
Berend
Finally someone who saw something positive in my case. My most loyal advocate had asked twice if they had all information necessary. Yes, they said. I also asked. I should not worry, they knew my case. They had all the information they needed. They were specialists in removing the oesophageal. They did it 40 times a year. Yes, you could well live without one. You just had to adjust your eating pattern. Your stomach would take over the function of esophagus. A tube instead of a bag. Small amounts of food. Sports would not be a problem. The operation was typically carried out with a robot. It would be done maybe already in seven weeks, that would be enough time after the last chemo. No, they had not operated on patients with similar severe metastasis, but that did not matter. The standard had shifted. Yes, they had all the info, it would only be necessary to do a PET CT scan. If this was no worse than that of June if would be a go ahead. If i could drop by as soon as possible to speak to the doctor. The PET and CT scan and results session could still be arranged before my skiing holiday. Sure I could drop by tomorrow. I'll be there at half past four. This was Tuesday 5 o'clock. The conversation lasted nearly half an hour. Suus was still sick ... who would accompany me? My parents would take all the grandchildren to a Dutch children show, so they could not do it. My most loyal advocate could make time. My sister in law could bring me ..... everything was arranged. I slept well but briefly Tuesday night. The day flew by. My sister in law picked me up. We had plenty of time. They let us wait for more than an hour. The interview went well. All questions were answered. It was to good to be true. Yes, other hospitals had said no. It happened. They saw it differently .... they were the forerunners. My reaction to the chemo was unique. Yes, the only thing was that still missing was the first PET CT scan in June had viewed. Or else I could mail them the pictures. To what level was the metastases? Eh....somewhere in my intestines up to the level of my navel. No problem as long as it was not lower. I would be called today (Thursday). There was no indication that I might get bad news. At 13.10 the doctor phoned me. Ehh, he had not realized that my metastases was not only around my esophagus and my intestines. My metastases are also around the aorta, my heart, my pancreas etc yes that was still different. They were sorry. Surgery is not an option. Goddamn ........ bastards. I'm not a plaything. You said you had viewed all the info. Worst of all my most loyal advocate and I devised our own protocol to prevent these kind of mistakes from happening. We had learned it the hard way in December with all the second opinions. They cost a lot of energy. Only when the doctors confirm that they have all the info, then I come into the picture. Beforehand all contact go through my most loyal advocate. He is not to blame. They confirmed to him twice that they had viewed everything. Luckily I only walked around for 48 hours with the idea that we had the solution. Suus is still sick, so the kids and running the household are a good distraction. Monday my next chemo. I'm even more motivated than before Tuesday. Bring it on. I am ready.
Stay strong.
I will beat the statistics.
Berend
I will beat the statistics.
Berend
dinsdag 12 februari 2013
The other side of the coin
No idea why, but this time I feel more like starting in English. It is a more subtle language than Dutch, which I am forgetting quite rapidly with all the Dutch around me and the chemo eating up my brain.
Rome was great. Suzanne suggested we rent a scooter, which we did. No need for any drivers licence in Italy up to 125 cc. We drove more than 85 kilometres within Rome in 3 days. We saw everything and enjoyed the Roman way of life to the max and the heavy traffic in Rome. At the end of the 3 day trip I drove more Roman than Roman do. I totally ignored my dietary requirements and enjoyed the Italian food in all aspects... anti-pasta, pasta, pizza, primi, secundi, fish, saltimbocca, truffle, ice cream (the best in the world - chocolate meringue!) and desserts. I even drank two small glasses of wine - Barolo off course! I brought back with us a big shopping bag full of Italian specialties, including some tomatoes, red pepper and truffle.
We returned Sunday afternoon and had the result appointment on Monday morning. I slept fine, still in my Roman blues. I was quite relax while awaiting the results. Within a minute while telling the doctor how many kilometres I had biked, skated and skied, she gave us the good news that all was stable. Normally she is very conservative and careful with her remarks, but this time she showed for the first time that she also is starting to believe in a miracle. She briefly mentioned that maybe in a few month time they could consider other avenues......is this light at the end of the tunnel? For the time being she was very clear not to change the winning strategy; i.e. we are proceeding as planned.
It is interesting to experience that although Suzanne and I were very relax beforehand, still in the Roman blues probably, underneath there was a lot of anxiety and stress. It all erupted afterwards.....suddenly we were in a stupid fight and before I knew it I was in the train heading home while Suzanne was in the car. Not something to be proud off. But the fact of life is that this disease causes a lot of stress in a relationship. We both experience it differently and more importantly, our feelings and anxiety will be different at any given point in time. Our feeling will not often be in sync. I can be in low while Suzanne is more stable or vice versa. The thing is that you will be protecting yourself and will be ensuring that you do not slip into the low together. We were there during the first few days and I can tell you it is devastating; as such you go in survival mode and do not want to go down at the same time. It is of course also very different for the patient and the care taker. In any event it is very strenuous on a relationship. Thank god (if there is one) that despite our ups and downs (which are clearly more caused by my volatile personality) we are also able to find time and space to level and share our feelings; to be positively in sync. This ensures that we are still able to enjoy life. It is easy to drift apart as a result of cancer. Unfortunately, it often happens that people split up after having recovered from it. I do not expect this to happen to us, but there is no free lunch in life, we will need to work on our relationship to ensure that it won't happen.
It might sound strange but I am sometimes getting very tired of my way of life. I am constantly trying to convince myself that I will not die. 62 rounds on the skating ring, 8000 metres of altitude difference on the ski slope, 32 km on natural ice and most recently 37 km on the mountain bike. Each time longer, harder and deeper. Not to convince you, but to convince myself; I will not die. I will win this fight. If I am at the top of world while riding my bike, skiing down the slope or skating on ice, I will not die. Even more, nobody around me will ever be able to grasp that I am doing this while having cancer. They don't know it and considering that I am overtaking them on my bike or on ice, or skiing smoother and quicker down the hill they will never expect it. If I sport alone I typically am shouting and screaming at the cancer while doing my thing. Most people that come across me will think "that guy is crazy". Although all the activity gives me a boost in endorphines, it is tiresome to always have to perform. I do not need to win from the people around me but I have to out beat myself. I have to win. My drive to live is fueled by my anxiety to die.
I am greatly jealous of you out there that are living my live that I always wanted to live. That's why I might not always sound that interested in your stories. I live in my own world. A very different one than yours. One full of drive, joy, stress, anxiety and cancer. That's my live. Your's feels like history for me for the time being.
This weekend it was my 39th birthday. Despite that Suzanne was sick (and is still in bed with flu) I enjoyed a great day with my family. We went to watch Ajax in the Amsterdam Arena with almost my entire family. They did not win but it was a great experience. I was a bit anxious to take my entire family to a place full of hooligans, but luckily we were sitting opposite the hard core fans instead of in their middle.
Tomorrow a last minute second opinion. A Dutch specialist of oesophagus resection who sounded positive. Let's keep our fingers crossed. This might be it. This might be the break I have been waiting for......if not, Monday yet again a blood test and Bevacizumab, the start of my 11's chemo session. Bring it on. I am ready. The week thereafter 10 days of skiing with the family. Than a few days at home and again a short ski trip withmy sister and a few friends. Hard core skiing (just so they know). I might have cancer, but at least I ski 4 weeks this year.
Stay strong.
I will beat the statistics.
Berend
Rome was great. Suzanne suggested we rent a scooter, which we did. No need for any drivers licence in Italy up to 125 cc. We drove more than 85 kilometres within Rome in 3 days. We saw everything and enjoyed the Roman way of life to the max and the heavy traffic in Rome. At the end of the 3 day trip I drove more Roman than Roman do. I totally ignored my dietary requirements and enjoyed the Italian food in all aspects... anti-pasta, pasta, pizza, primi, secundi, fish, saltimbocca, truffle, ice cream (the best in the world - chocolate meringue!) and desserts. I even drank two small glasses of wine - Barolo off course! I brought back with us a big shopping bag full of Italian specialties, including some tomatoes, red pepper and truffle.
We returned Sunday afternoon and had the result appointment on Monday morning. I slept fine, still in my Roman blues. I was quite relax while awaiting the results. Within a minute while telling the doctor how many kilometres I had biked, skated and skied, she gave us the good news that all was stable. Normally she is very conservative and careful with her remarks, but this time she showed for the first time that she also is starting to believe in a miracle. She briefly mentioned that maybe in a few month time they could consider other avenues......is this light at the end of the tunnel? For the time being she was very clear not to change the winning strategy; i.e. we are proceeding as planned.
It is interesting to experience that although Suzanne and I were very relax beforehand, still in the Roman blues probably, underneath there was a lot of anxiety and stress. It all erupted afterwards.....suddenly we were in a stupid fight and before I knew it I was in the train heading home while Suzanne was in the car. Not something to be proud off. But the fact of life is that this disease causes a lot of stress in a relationship. We both experience it differently and more importantly, our feelings and anxiety will be different at any given point in time. Our feeling will not often be in sync. I can be in low while Suzanne is more stable or vice versa. The thing is that you will be protecting yourself and will be ensuring that you do not slip into the low together. We were there during the first few days and I can tell you it is devastating; as such you go in survival mode and do not want to go down at the same time. It is of course also very different for the patient and the care taker. In any event it is very strenuous on a relationship. Thank god (if there is one) that despite our ups and downs (which are clearly more caused by my volatile personality) we are also able to find time and space to level and share our feelings; to be positively in sync. This ensures that we are still able to enjoy life. It is easy to drift apart as a result of cancer. Unfortunately, it often happens that people split up after having recovered from it. I do not expect this to happen to us, but there is no free lunch in life, we will need to work on our relationship to ensure that it won't happen.
It might sound strange but I am sometimes getting very tired of my way of life. I am constantly trying to convince myself that I will not die. 62 rounds on the skating ring, 8000 metres of altitude difference on the ski slope, 32 km on natural ice and most recently 37 km on the mountain bike. Each time longer, harder and deeper. Not to convince you, but to convince myself; I will not die. I will win this fight. If I am at the top of world while riding my bike, skiing down the slope or skating on ice, I will not die. Even more, nobody around me will ever be able to grasp that I am doing this while having cancer. They don't know it and considering that I am overtaking them on my bike or on ice, or skiing smoother and quicker down the hill they will never expect it. If I sport alone I typically am shouting and screaming at the cancer while doing my thing. Most people that come across me will think "that guy is crazy". Although all the activity gives me a boost in endorphines, it is tiresome to always have to perform. I do not need to win from the people around me but I have to out beat myself. I have to win. My drive to live is fueled by my anxiety to die.
I am greatly jealous of you out there that are living my live that I always wanted to live. That's why I might not always sound that interested in your stories. I live in my own world. A very different one than yours. One full of drive, joy, stress, anxiety and cancer. That's my live. Your's feels like history for me for the time being.
This weekend it was my 39th birthday. Despite that Suzanne was sick (and is still in bed with flu) I enjoyed a great day with my family. We went to watch Ajax in the Amsterdam Arena with almost my entire family. They did not win but it was a great experience. I was a bit anxious to take my entire family to a place full of hooligans, but luckily we were sitting opposite the hard core fans instead of in their middle.
You can hear Oene cheering for the biggest Dutch soccer club!
Stay strong.
I will beat the statistics.
Berend
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