Fear not

I have not written on my blog in ages. I have many reasons for this, my fear of revealing too much personal information (not my own but of the people I love), not knowing what to say, protecting my professional career by not revealing too much about my illness. But there is one reason above all other why I have not written on my blog.

I don’t feel sick.

And I don’t want to be reminded I am a cancer patient.

When I reflect on the past few years, a few emotions float by. Losing my father has had a bigger impact on me than I dare to admit. But the joy of spending (a lot of) time with my niece and nephew has given me a new lease on life, so to speak. I really enjoy spending time with them and seeing the world through their eyes. At the same time, I have yet again worked too hard these past few years. I think it is my father’s work ethic which drives me to do my very best.

In september 2021, a neighbor passed away after a short but intense illness. She had colon cancer and I walked her dog each night for just one week when I found her at home and she collapsed. I called Victor and he called the ambulance. A week later she passed away. In a way it was a blessing that her pain did not last longer. But it made me realize how surreal it is that I am still here, living 10+ years with metastatic breast cancer, and still in relatively good health.

In November 2020 my oncologist changed my medication to Palbociclib with Fulvestrant, after it was clear that the Tamoxifen had stopped working. Palbociclib is a CDK4/6 inhibitor which is short for a cyclo-dependent kinases 4 and 6. This medicine blocks the CDK4/6 receptors on the cell (my oncologist showed me a great diagram). He gave an impressive public lecture.

I’ve been doing well on the Palbociclib- going strong for 2,5 years now.

Last September, my cousin Ineke passed away after living with triple negative breast cancer which had spread to her lungs. And it really hit me hard. I took her to the same hospital where I am treated, just days after my 53rd birthday. She had a CT scan but it was clear things were awry. She was asked to stay to see her oncologist. For weeks she had been trying to get an appointment to no avail. That morning – on August 31st 2022 – we sat outside in the sun waiting for 11 am. I pushed Ineke in a wheelchair since she didn’t have enough oxygen to walk on her own.

Her oncologist was clear: she had weeks, maybe months, to live but no more than that. It was a death sentence, and there was nothing I or anyone could do. Her words were cold as ice. A chill came over me, although the day was warm.

Ineke was strong, brave and alert, asking about options but there were none. I have never felt so defeated before. As we drove back to her new house she called her husband, children and her parents with the terrible news. She and her husband had just moved into their new house the day before. As things turned out, she would be in the hospital for a few days and then returned to spend her last days at home. A week after receiving the news she passed away. She was only 57 years old.

It’s still a painful memory for me. I suffer from survivor’s guilt: why should I be here when so many of my friends pass away? In December Ellen K passed away, someone I respect deeply and who has been a patient advocate for BVN and metastatic breast cancer patients like myself and Ineke for so many (30+) years. In March of this year we said goodbye to yet another patient advocate – Anouk – who was just 46 years old and also a member of our expert panel for the Dutch Breast Cancer Association. It is a tough act to follow.

As I reflect on these strong women I feel blessed to be able to do things that enrich my life. It is only possible because of new medication and the tireless advocacy of women who care. At the same time, I feel my energy fading a bit. It is time for me to focus on what really matters: my own voice and my life. Thanks for everyone’s support. Much love! Sheila

Looking back

Dear friends and family. So much has happened, and I am so sorry I have left you in the dark for so long. Just a quick post to share some important moments from my life over the last two years. As you can tell, I’m still alive and kicking. It’s been over 8,5 years since my metastatic diagnosis and a lot has happened.

October 2019

I visited my dad in Malaysia in October 2019, two months before he passed away. We were able to share some quality time, and it was the best decision I ever made. He told me about his parents, introduced me to his students and colleagues at UTP CSI and we traveled to Ipoh, to Penang and to the Swiss Garden Resort in Lumut.

In Penang, October 2020
With his good friend Dr Yasir and me in his garden October 2021

December 2019

My dad moved back to Houston Texas in November to be with his wife Deloris. Two weeks after moving back, he had sudden heart failure. The ambulance took him to the hospital in Bryan Texas but he was already in coma. Deloris called us to let us know. On December 5th, my sister Nancy and I took the first plane to Houston. There we said our goodbyes to our father, who had been kept in coma but he had very little brain activity.

It was a very emotional time for Deloris, his stepdaughter Monica and son in law Francisco, their daughter Diana, and for us. We were able to share our grief together, and a few days later Nancy and l left to go back home, to The Netherlands.

A pound of flesh

My operation (masectomy) took place last Thursday, July 18th. I chose not to have a reconstruction because I am allergic to antibiotics which are used to prevent infections when using sillicon implants. So the operation only took an hour and a half and I woke up shortly after.

The next morning I was discharged. From the first moment, I felt fine. Painkillers and paracetamol help, but some days I go without taking them and I feel fine.

Our friends Brad and Alec came from San Francisco to visit and provided ample distraction. The heat was unbearable, reaching 40 degrees, without air conditioning.

After a week, I’m getting used to looking in the mirror and seeing the scar. It is s-shaped and quite high on my chest. Below the scar the surgeons left a small bit of breast that was not affected.

It turns out they had to remove more than expected. I asked how much, and the surgeon said 521 grams. That is a pound of flesh. I think back to what Portia said to Shylock in The Merchant of Venice. You may take a pound of flesh, but not one drop of blood more. So that is what it feels like, although I’m very glad medical technology has improved since Shakespeare’s day.

I did some online shopping and found two very pretty prosthetic bathing suits by Sunflair, so far so good.

Have a great summer! I still owe you a post on my trip to Europa Donna in Milan in June. Will be coming shortly.

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,