100KiKaKilometer – Actie voor KIKA: Help je mee?

Op woensdag 22 mei 2019 starten wij de EY-Parthenon Ringvaart Regatta, ‘s werelds langste onafgebroken roeimarathon. Acht jongens, en één stuurvrouw v…
— Read on www.actievoorkika.nl/100kikakilometer

Valentijn roeit morgen 100 km met zijn vrienden om geld op te halen voor Kika. Wat een bikkels! Wie helpt ze om hun doel van €5000 euro te behalen! #100KiKaKilometer

Valentijn is rowing 100 km tomorrow with his friends from Triton to raise money for cancer research for children. They have been training for months. Please help support them if you can!

Our house is for sale

Ons huis staat te koop: een mooi ruim gezinshuis (173 m2) met 4 slaapkamers, mooie tuin op het westen, voldoende parkeerruimte voor de deur en speeltuin naast het huis. Locatie: Eemnes, vlakbij Laren en Blaricum, 20 min naar Amsterdam, 15 min naar Utrecht. Internationale openbare basisschool om de hoek. Stuur het door!

Our house is for sale: it’s a lovely family home (173 square meters) with 4 bedrooms, relaxing sunny garden, lots of free parking and a children’s playarea next to the house. Location: Eemnes, close to Laren and Blaricum, 20 minutes to Amsterdam, 15 minuten to Utrecht, public international elementary school around the corner. Please share!


Patiënten symposium Ik leef! met uitgezaaide borstkanker

Patiënten symposium Ik leef! met uitgezaaide borstkanker op 27 oktober in Maastrict.

On October 27th, a patient congres will take place in UMC Maastrict about living with metastasized breast cancer. As a member of the expertgroup, I am co-hosting a discussion on working when you have metastasized cancer.

Please share this!
— Read on borstkankeragenda.nl/nl/pati-nten-symposium-ik-leef-met-uitgezaaide-borstkanker

Back again

For all of you who missed me, I’m back with another post. I’ll give you an update on 2017.

The biggest news is of course, the birth of my niece, Sasha Remi Westwood Ghosh, Nancy’s little bundle of joy. She is – quite literally – a bundle of joy, shining her bright smile since she joined us on this planet on May 25th, 2017.

In the beginning of May I went to London to visit Nancy. Nancy – who was 9 months pregnant – took me to see 3 wonderful plays:

  • Obsession with Jude Law, directed by Ivo van Hove, with the Toneelgroep Amsterdam, based on the Italian Ossessione from 1943. (Halina Reijn and Jude Law were excellent as Hanna and Gino whose love is doomed. Read the review here.)
  • Rosencrantz and Guildenstern are dead – the Tom Stoppard play came to live at the Old Vic (50 years after premiering there), and to laughs, as the audience (and reviewers) loved it. Daniel Radcliffe (a.k.a. Harry Potter) played Rosencrantz to great comic effect, although his counterpart Joshua McGuire, was even better.
  • Finally, we ended our London theatre season with Romeo and Juliet, at the Old Globe, which is much as in Shakespeare’s time, except it’s more hygenic now and probably smells better. The director had chosen a Baz Luhrman like staging and styling, with the characters wearing white and black, to modernize the play. I enjoyed it, although a more traditional styling would have appealed to me more.
  • All in all, every reason for working on plays once again. Armed with good books about writing for the stage, I left with Nancy to come back to The Netherlands.

Two weeks later, Nancy went into (hard) labor and gave birth to her daughter, Sasha Remi. Nancy was quite bruised and very tired, but did a great job in the weeks and months after to take care of little Sasha, helped by our mom, who is a great support in times of need.

Besides the good news, I also had a bit of a scare.  In May I noticed blood coming out of the nipple on my right breast, again. An echo and biopsy showed renewed growth of small tumors in the right breast. The MRI scans I had in May showed 3 different small tumors in my right breast, about 6 mm in diameter, together about 2,3 cm. They were in the same area as the previous tumor, so it’s hard to say if they were new.  Thankfully, the tumors in the liver were stable, so the Tamoxifen seems to keep them in check. My wonderful oncologist, Dr. Baars, suggested radiotherapy (bestraling) to treat the breast.

In June we visited our friends Laurie, Dana and Mary in Cape Cod, and saw Doug and Maurene, and Alice and her friends as well. We had a great vacation. I will upload pictures in my next post.

In July of 2017 I started 21 sessions of radiotherapy. The hospital is quite nice, and the room is lighted with LED lights in different colors. They try to make you feel comfortable. The machine is quite large, with a flat table you lie on. My arms went into braces and the machine turned around me. The actual radiation time only takes about 3 minutes, but the positioning on the table needed to be exact, since the angle of the rays was important.

I managed to keep working during the treatment. I worked in the mornings and then went to the hospital in the afternoons. Later in the week and in the month, Victor would take me. My mom drove me as well. I wasn’t too tired, although the daily travel takes quite a bit of energy.

During all these events, Victor was my support and took care of me, driving me places, and cooking wonderful meals to keep me going. I found it took all my energy to keep working, and had little left for other pursuits. Victor, in the meantime, wrote a book about how to implement the new European privacy law. Please check out his book here (and please share with anyone you think might be interested):

Implementation of the General Data Protection Regulation (GDPR)

After the treatment, I went back to work full time, but found it quite challenging. The program I’m working on is quite political, and the changing cabinet had impact on the governance. Also, our programmanagers were dismissed and we had to deliver results while waiting for a new program manager.

In October, Victor and I went to Edinburgh with Sebastian, Henriette, Barbara, and Valentijn to celebrate our 12,5 year wedding anniversary. Edinburgh is a wonderful city. We had a great tour guide – Bill Hill – who showed us all around his home town and told us great stories. We will definitely go back.

On October 26th, we went to a Simply Red concert, and it was a blast! Definitely had a great time. Mick Hucknall is very good live, after opening with jazz standards, and some older ballads, he went on to the classics, but also gave us a new song, simply called Queen – a tribute to Queen Elizabeth II.

The scans in November showed that all was stable. All tumors are still there but are no longer growing. I still have my checkups every two months. Dr. Baars has now left the hospital as she is retiring. I owe her my life, and will send her a thank you letter for all she’s done for me. For now, I leave you. Goodnight all!



Dear friends,

Here’s a quick update to let you know the results from my appointment this morning.

My oncologist informed me that my liver seems to be stable; there are signs that the two tumors are slightly smaller and that they are responding to the Tamoxifen. On the downside, there were three new round growths visible in my right breast, all about 5 mm in size. Not so big, but confirmed malignant. My oncologist signed me up for a PET scan which will take place in two weeks time. For the PET scan you have to take some radioactive sugar (yum) which causes cancer cells to light up. This should show if there are any other areas where the cancer may have spread.

Depending on the results, I will either get radiation treatment – if there are no indications of new metastases – or systemic treatment (meaning chemo), if there are mets. Either way there is a treatment plan coming up.

My main concern now is that I don’t want to miss our vacation to Boston in June. Victor and I will be visiting our dear friends the Caledonians, who were so hospitable and so much fun last time we were there, in September 2014. I will dig up some pictures from that trip and post them, since it was a spectacular spot and many happy memories!

Yesterday we celebrated King’s day, which was memorable for being so cold (low 40’s). I think it even hailed shortly, but I was inside then, snug and warm. King’s day is an outdoor event; we went to hear some live music in the village and had a beer (just one). It was nice to catch a few stray rays of sun, but once the sun set we went back home. Hopefully it will get warmer soon!

Tomorrow I leave for a short break to London, to visit my sister and accompany her back home. She is finishing up her Masters at the London Film School and has some exciting news which I hope to share with you soon. Thanks for all the nice notes and comments! Ciao!



Yes, I’m back. I’ve been in a kind of “privacy zone” for the past year. This is partly due to Victor’s new occupation of privacy guru but also because I have had a tough year. On the one hand, I’ve felt really good. On the other, I have been working full time for 3 years now and it’s taking its toll. I have a hard time sleeping through the night, waking up around 4 am most mornings.

I also have some bad news to share. The cancer has woken up and is active again. I first noticed this last year around this time. I have my yearly scans in April and last year the scans showed a new tumor in the liver, about 23 mm big. By august, this had grown to 27 mm. Since the other tumor (3 cm) had shrunk to 26 mm, the radiologist concluded that the cancer was still stable. My feelings were that it wasn’t stable so much as dynamic. Just because one grows and the other shrinks doesn’t mean it’s steady. I just had scans last week and this past week. Next Friday, I will get the results from my oncologist.

Last year we took a wonderful family holiday in July and August. We visited Malaysia, first KL where I saw my high school friend Mike, then to Taman Negara where I sprained my ankle. Fortunately I could walk again the next day. And then to Ipoh, to visit my dad and Deloris. The kids had a great time and we all had lots of fun. Because of a volcano eruption our trip to Lombok was cancelled and we flew directly to Bali for the last 9 days. Since we arrived a few days early, we checked into a simple but very clean and pleasant hotel in Legian, close to the beach. We tried some surfing but the surf was quite powerful. After that, the kids went on a catamaran trip to a bounty island while we switched hotels. Henriette, Barbara and her boyfriend left a few days later and we traveled to Ubud with the boys. We had a lovely time, even ate vegetarian one night and had a good trip back.

Last december I switched to a new assignment. I now work for the Chamber of Commerce on personalized services for entrepreneurs and (small) businesses. I will keep you posted. For my Dutch followers: Happy Kingsday on Thursday!

Much love,



On Monday my mom drove me to the hospital. I have an inner ear infection which should heal on its own (says my GP) but it still causes pain and makes me deaf in one ear.

The results were stable, no clear difference from last year’s scans. I was very relieved to hear it. Since I was the last patient of the day, my doctor had more time to talk and so we talked about the industry and how difficult it has become for her to enroll patients in studies because of all the requirements the pharmaceutical companies impose, probably to avoid lawsuits or issues with the results. She works with international researchers on cancer studies and has a lot of experience in this area. My mom suggested to me that this would be a good topic to examine. I agree, although I have no prior experience in this area and it is a tough topic.

I’m doing some consulting work in health care policy, focusing on IT. But IT cannot solve issues such as these. And I can’t solve them either, I’m afraid.

So my medication seems to be working well, and I intend to take full advantage of the good things life has to offer.


Towing along

January was an extremely busy month. The year started off with car trouble at the Arena where Nancy and I watched Star Wars. The ANWB towed and repaired my car so I’m super grateful to them!


We had visitors from the US – Greg, Nicole and their sons Jeremiah and Isaac – came to visit us from Montana.

They took care of Sebastian when he was an exchange student there in 2009-2010 and now came to visit us. It was nice to meet them and have them stay with us. The boys were so well behaved. Unfortunately we had many rainy days. Annet took them to the beach. Victor took them to the Military museum in Soesterberg, to the Dierentuin Amersfoort (zoo) and to Amersfoort. Greg loved kibbeling, Nicole loved the kringloop winkels (second hand stores) and they all had a good time with Sebastiaan, Irene, Annet, the kids, Jaap and us. Jaap was very sad when his pals left….

We also had the privilege of joining the Tante Mientje lunch organized by my friend Yvonne. Tante Mientje is the name of their boat, named for a favorite aunt. And I joined my friends Gail, Willianne and Anita for the Slow food film festival where we saw two excellent movies about cooks: “Fucking Perfect” about Sergio Herman and Chef. Both I highly recommend! Last but not least, my mom bought a boat! It’s a Porta boat which means you can take it with you. It folds up to the size of a surfboard and has a small electric motor. It’s a birthday gift for Nancy but I know I will have a lot of fun with it too when the weather gets better! Just towing along!


After they left I came down with an ordinary common, cold- I’m lying here on the couch with an exaggerated sensation of feeling sorry for myself. It’s definitely a cold, with all the signs of an inner ear infection, aggravated sinuses and coughing up mucus. I’ve been feeling lousy for 5 days now. Unfortunately, Victor can’t help me because he is upstairs in bed with the flu. Poor guy.

The pain in my ear was so bad these past few days that it occurred to me that maybe Van Gogh cut off his ear because of an ear infection. I guess we’ll never know. Tomorrow I can visit my GP.


This afternoon I’m getting the results of my scans from January 28th. As usual, I went into the scans with a slight apprehension. This time because I was running late. A traffic accident had blocked the highway and I had to take the scenic route, which was beautiful but busy. Next time, when I’m not driving myself, I’ll take some pictures.

I had to take off my shirt and bra but could wear a cardigan. The thing I always forget when going into the scan is to bring a cardigan with wide loose sleeves. The nurse inserted the needle into my wrist but I couldn’t pull my sleeve over it, because of the tubes sticking out.

Fortunately, I could do the CT-scan first, but had to cross the corridor half naked. This machine always makes you feel like you have to pee, because the contrast liquid they inject makes you feel warm as it passes through your arteries. It only takes 10 minutes or so. Of course, I already had to go to the bathroom because of all the fluids you have to drink 2 hours ahead of time. but had to wait till the scans were over.

A friendly doctor asked if I would volunteer as a test subject for a new type of mammogram (one that doesn’t crush your breasts between glass plates!), so I did. Traipsing over the hospital corridor half naked isn’t very good for your self-esteem but it keeps you busy. I had to lie down on a machine which looks like a self-tanner but was covered by gel. The scans were done in 60 seconds per breast and this machine is definitely much woman-friendlier. I hope they start using it soon.

Back in the MRI room I had to wait for my turn. The MRI makes a lot of noise and I was given earplugs. Maybe that’s what set off my ear infection?

After 20 minutes or so I could get down and was disconnected from the machine. The IV needle could stay in for the blood test. This time I got dressed and waited in line for my blood to be taken. I’ve been reading about start-ups that only need one drop of blood to run hundreds of tests. Here three tubes were filled to the max. I was surprise by how bright red my blood looked. Must be good then. The lady who helped me took the needle off and bound the wrist with a tape that doesn’t cling to your skin. Such a great invention!

Afterwards I felt very groggy and decided to have some lunch. I always feel exhausted after the scans, but this time I felt weak as well.


The next week Victor and I followed two Liferay training courses. Liferay is a very useful portal and collaboration suite, and I plan to start using it more for my projects. Work is going well, but very busy. I find it hard to switch from one project and client to the next and am having a hard time deciding what to do. Working 5 days is proving to be too much for me, and I also want to start work on a PhD. In the meantime, I’ve found several business partners with whom I can work on new opportunities. This is good news, but also takes time and has not yet resulted in paid work.

A quick update on my proposed Ph.D. project

I went to Dr. Julia van Weert’s oration, in the Old Lutheran Church in Amsterdam. She spoke passionately about health communication with vulnerable people and launched her Amsterdam Center for Health Communication at the University of Amsterdam. Afterwards, she was very glad to see me and I promised I would contact her for an appointment.

I’ve decided to focus on the topic of empowering cancer patients and survivors through technology, which is a relatively new research topic surprisingly enough. I also look for inspiration to frontrunners like dr. Rosalind Picard, from MIT, who is an inventor and a professor in the area of affective technology (emotional technology), a subject I studied while at Stanford. Also at the Universiteit Twente, several scholars are making progress in this area.

I need to figure out my planning now. I still need to work to earn money to live. But research also takes time. Alas, the eternal (writer’s) dilemma. Any tips are much appreciated!



Looking back

Dear friends and family,

This past year has been a good one for us! This was a nice change from 2014, when things were not looking so good for friends and family. Your good wishes for a happy 2015 have come true!

Sheila’s health has been stable all year. The medication has kept the disease at bay. No reason to doubt her continued good health in the near future.

We went to Bangkok in March to participate in the Wharton Global Forum. Wharton is one of the top 3 business schools in the world.


yearreport 2015 photos

Sheila is a member of the organizing committee in Amsterdam (as a Penn alumn) which is hosting the Wharton Global Forum in june 2016 in the Beurs of Berlage, the old Amsterdam Stock Exchange. We joined the cooking school Blue Elephant as part of the program in Bangkok. The three days there were spectacular. Besides learning a lot, we heard the Thai prime minister speak in Thai and watched fireworks. After Bangkok, we went to Penang to visit our friend Bommy and then visited Sheila’s father Dr, Deva Ghosh. He is over 75, but still active als full-time professor seismophysics at the Technical University of Petronas, in Ipoh, Malaysia.

Sheila also visited Bruges this year with her mom and spent five days in New York visiting her sister Nancy. Our dog Jaap took us out to the woods or the moors to play with the ball. End of august we joined a fantastic cruise gemaakt to Norway. We highly recommend this trip, since you see the fjords and nature up close. (Also, we got very spoiled in those 10 days)! The pictures on the other side show our travel.

Sheila has several longer assignments as an independent consultant (‘Business/IT architect’) for the Dutch government and for a government health care agency. Victor has expanded his legal company with new clients. He has followed several courses to keep his tax law credentials up to date (he is a registered tax law specialist).

Victor is also busy with his hobbies. He visited mr Nigel Webb in the UK for an exclusive Mark I event, traveling in his 1958 Jaguar Mark I with his brothers and our neighbor Rob and his son. het Brooklands museum. Nigel hosted more than 200 guests with a bbq and live jazz music. Victor also drove a few classic car rally’s with friends, including the yearly Lions Rally in Blaricum. Victor has played a few concerts and recently joined Bruce Skinner’s big band as drummer. This requires weekly practice and study!

Sheila is planning to work on a PhD in the area of Health & ICT, focusing on improving patient experiences. This is thanks to encouragement from uncle Frans and aunt Annemieke Alting von Geusau. Uncle Frans is professor emeritus in international law and wants to be informed of Sheila’s progress. Victor has to keep her focused! ‘Time is setting priorities’, according to uncle Frans. We visited them to see the 1816 diploma of the knighthood of the family. This is part of a family project to create a family book. Victor’s cousin Alix in Austria is working on this and is organizing the family reunion sometime next year, to celebrate the 900-year old Von Geusau family.

The ‘kids’ are now adults and doing well. Eldest son Sebastian has a great girlfriend (Irene) and has found his passion: he is studying to be a teacher at the teacher’s academy in Groningen. In addition he worked at a callcenter and in a bar. Irene is studying medicine and doing her internschip in a hospital in Deventer. Daughter Henriëtte (22) is enjoying student life as a member of the UVSV-sorority in Utrecht. She is studying culture and communication and works at a pharmacy. Son Valentijn has started as a first year Psychology major. He is very motivated and getting high scores on his exams. He works as a waiter in a restaurant in Utrecht (Broers). Daughter Barbara (18) has a great boyfriend Luuk who is smart and a good trumpet player. She is in her last year of high school and will take her exams in May. She is also taking singing lessons from Claudia Streza, who first gave her lessons when Barbara was 9. Luuk passed his exams (Gymnasium) last year and has a jazzband with his two brothers. Barbara wants to study medicine and sing with Luuk’s band. She also works in the Albert Heijn ( a nice grocery store) where Luuk is teamleader. Of course all of us, including their mom Annet, are very proud of these wonderful young adults!

Finally, we are planning to spend our Christmas with Sheila’s family. Her aunt Nivedita, and cousins Rahki and Payal are traveling all the way from California to join us, Nancy, and Sheila’s mom Ellen this Christmas. We’re so happy to see them.

We wish you a great Christmas and a very happy 2016! Focus on the things that matter most to you and make you happy!

Lots of love and happiness,

Sheila en Victor

Last check this year

On December 4th, I had my last visit to my oncologist this year. My results were stable, as they have been these past 2,5 years since I’ve been taking Letrozole. I’m glad I’ve been doing so well on this medication.

Since January, I’ve been working nearly full-time. I’ve had nice breaks this year though. Victor and I went to Bangkok and Malaysia in March of this year, in May my mom and I went to Bruges for a weekend, in August Victor and I took a cruise to visit the fjords in Norway (lovely!), and in September I visited Nancy in New York for a few days. All in all a great year!

I will post our end of the year X-mas letter to all of you after completing this post.

End of January I will have my yearly CT and MRI scans. I’m expecting this to be stable but you never know. The proces is exhausting though, and after the scans I’m usually beat.

We’re planning a family trip to Malaysia and Bali in the summer of 2016. We’ll drop by my dad of course, and try to visit the Taman Negara forest as well. In Bali, we’ll take a tour past villages and less visited sites. If we have time, we’ll try to go to Lombok as well. Victor’s great grandfather – Paul August Alting van Geusau – died in the Lombok expedition of 1894. We have a book describing the war and his death at age 27. He was a poet and writer as well as a lieutenant in the Dutch army. His son was raised by Victorine, after whom Victor was named.

Sebastian, Valentijn, Barbara and Henriette will join us and we’re all really looking forward to this big trip. Unfortunately Jaap – our Dalmatian – can’t come along, so hopefully my mom will be able to watch him.

I have decided, with encouragement from Victor’s uncle Frans, to get a Ph.D. I have tried before but stopped and probably a good thing too because back in 1994-95 I picked the wrong topic (telecommunication in the third world). Now, my focus will be patient empowerment through technology. I first have to find a promotor who is willing to sponsor and guide me. And for that, I have to write a research proposal. So I’ve got lots to do before the new year starts!

Lots of love for all of you!