Yes, I’m back. I’m sorry it’s been so long since I’ve posted anything on my blog.

The last months of 2014 were hard for me. We lost another dear friend of ours, Patrick, who died far too young of cancer. He and his family have been very close friends of Nancy and myself since we were teenagers and feel like our extended family. When I was sick, they were there for us. His illness surfaced when it was too late for treatment. He passed away end of November. I wish I could say or do something to be supportive of his family. It makes me feel sad and angry at myself at the same time for not being there.

Just before Christmas, my father in law passed away. He was 90 years old and had a long and fulfilling life.

I’ve been working full-time since January and my work is satisfying. It means having to do less work for the societies that I’m involved in. I have had to reconsider how much time I spent on these activities.

I had scans in January which showed good results. The medication is still working and the cancer is still in remission. I couldn’t wish for better news at this time.

Right now, Victor and I are visiting my father in Malaysia. Thanks to my mom who is looking after our dog Jaap. Without her watching him, I don’t think we would have gone on this trip. My dad is doing well and working hard as a professor at UTP, where he leads the Geophysical Research Center. Wednesday we head back to Holland. I’ve been able to do some writing here, and have been reading a lot. Just finished Stoner by John Williams, Perfect by Rachel Joyce, and am now reading On Liberty by John Stuart Mill. This last one is a favorite of mine, and I highly recommend it to all who are wondering what is happening to the world we live in.

Access to eHealth records for Patients

Some of you wanted to hear about my research project. I am working on a research proposal about making information available to patients with metastases. Lately I’ve been looking into the topic of eHealth. eHealth is about developing a digital information infrastructure to support the health care needs of patients and professionals.

In The Netherlands, we have a national eHealth infrastructure which can support hospitals with standards and data exchange formats. There is also a framework for developing patient portals based on the electronic health records (electronic patient dossiers – EPDs- as we call them here). But the development of eHealth projects is done at the local or regional level. And there they run into very practical problems: a lack of expertise, vendor lock-ins and complex organizations. Not to mention security issues and risks and limited budgets.

I’ve always focused on the issue of getting digital access to your personal data  (which is a key concept behind many systems now in use such as DigiD and Mijn But I have not worked in the health care sector before.

On January 21st I attended a meeting about patient portals. Besides myself, there were two patients who asked questions. Many information managers from hospitals were present as well. It is clear that they are struggling to make this work. A national organization – Nictiz – has developed infrastructural building blocks needed to build a patient portal. But in practice, it is difficult to make this work. 

Here’s a great video from Australia about their eHealth system.

Makes it look easy, doesn’t it?

At the moment, most hospitals have EPDs (systems with medical records) which are primarily focused on supporting the medical staff in the registration proces. They frequently need to share information with other medical professionals. But who can access the patient’s medical records? By law, a patient needs to give permission before his or her medical records can be shared by other health care professionals. To enable this, the website offers an online registration form so that patients can indicate which professionals can access their health records.

Two initiatives seem promising: is a patient-oriented portal to which you can subscribe as patient. But only a few hospitals are involved. At the meeting, the founder explained how he set up this project when his daughter was diagnosed with a chronic disease at age 3. Another initiative is Iederedagbeter, an initiative by someone with whom I worked in the past who is also chronically ill.

To me, it seems that giving access to the patient is the first step. Here is where my personal experience and professional expertise can help others. For starters, there is no overview of which hospitals give access to patients. By accident I discovered that the AVL has a patient portal but I still have no access (not for metastases I think). This is an example of why it is so difficult for patients to find the information they (we) need: it is fragmented and not communicated.

This is a problem that needs solving. The way I see it, any portal could work as long as the EPD systems can provide the data and files. And that’s where I suspect the real problems lie. In other sectors most systems are closed – vendors don’t want to allow other vendors access to their systems. This is why the Dutch government is a strong advocate of open standards.  But it is up to the individual organizations who procure systems to use the standards that we’ve agreed on.

So the first issue is how can we force vendors to comply with open standards and to provide information (web)services. This is really a pre-requisite for patient portals to work. It also makes more sense to me to place the patient portals outside the domain of hospitals. Perhaps patient advocacy organizations can get involved in the discussion. The second issue is how to organise the information so that it is accessible . And again, this is where patient organizations can make a real contribution. So where should we start? Let’s turn the system around and start with what patients need.  Perhaps you can help me spread this post!

Making our government’s IT work

I had a very interesting day yesterday I thought I’d share with you in two posts. This post is about my work.

First I had planned to go to The Hague but since there were accidents on every road surrounding our little town of Eemnes I decided to work from home. I’ve been working for Logius for 9 months now on standards for data exchange. In november and december I completed the new architecture for Digikoppeling (for the die-hards, the Dutch version is available on

I’m currently interviewing experts on the trends they see in eGovernment and specifically for data exchange. It’s interesting because the work is now moving from the “back-end” to the “front-end”. Where our eGovernment services have been focused on creating a services oriented architecture (an IT infrastructure for government organizations to work together), we’re now moving to creating actual value (smart services) for the end-users.

For those of you not in IT, a services oriented architecture aims to develop reusable building blocks (modules based on web services) so we don’t have to build entirely new systems every time the structure of our government changes. The experts I interviewed I have come to know over the past year (some longer) and when I see them they always inquire after my health. It’s very kind and makes me feel good. I often wonder what will happen once the medication stops working, but these thoughts never last long

Just a bit of background about what’s happening in our government. It is common in The Netherlands to move responsibilities and public services from one organization to another. This is of course an expensive solution to problems because organizations need to adapt to their new responsibilities and need to buy new IT systems. We are in the middle of new major changes in our public services.

The Revenue Service is struggling with the (re-)distribution of additional stipends for low-income households (the system for stipends for rent and health insurance doesn’t work and will be changed again soon).

Starting in 2015 all social services for children and youth, and healthcare services for the elderly and chronically sick will need to be organized by the local municipalities.

I’m a member of a team that is working on developing key IT services once and reusing them so that we can avoid buying huge closed IT systems which don’t work when things change. The trend now is towards smaller web services and dynamic data services. Many people (myself included) want to be able to do everything online and on the road using our smart phones and tablets.
But government services are very complex. The rules and regulations are complex and contain a lot of exceptions. This means that any time anyone needs something – a permit, information, or has a complaint – many types of information needs to be assembled from various sources and needs to be assessed. Besides being big administrative organizations, our government also has many laws, rules, exceptions and policies, which are not always “programmable” and which change frequently. Just think of the tax laws which are updated yearly.  This move to smart services will be an interesting development to follow. By 2017, all dutch public services need to be accessible online, so there’s not a lot of time left.

My assignment is to write a new vision for our data exchange standards but the real challenge will be to make this all work in a way that is much easier than it is now. It’s an interesting and dynamic area and it is rewarding to work for a public cause.

On a more personal note, I’ve been following the eHealth trends. On January 21st, Nancy’s b-day, I attended a seminar on giving patients access to their health records. It was an interesting day and I had the chance to talk with some colleagues from Logius, some people I knew from other projects, and with information managers from hospitals. There are still very few patient portals: Medische Gegevens and IedereDagBeter are examples of patient portals (Dutch only). Since it is a subject that combines my professional expertise and personal experience, I try to keep up to date. A project leader from Radboud Medisch Centrum explained the plans for Hereismydata (Dutch) in which your data from all sorts of sources – such as Runkeeper, wearable devices and more – are combined to create a dashboard for you (and your doctor). Monday morning I spoke with a former colleague who now works for a national healthcare organization about the developments in this field. It could also be a topic for further study. For now, I will stick to patient advocacy using social media.

Next: Our Zonta Children’s Concert is coming on March 9th! Please come!

New Year’s Resolutions

I returned to Holland on Christmas eve (got an upgrade to Business Class on Emirates for the first leg so had a very pleasant journey). It was wonderful to see Victor again after 18 days apart. We spent a quiet and relaxed Christmas together.

During my holidays in Malaysia I was able to join in the discussion organized by Kim, a very inspiring Ph.D. student in Professor van Weert’s research group. I really enjoyed the discussions that took place (anonymously). It made me think about my own ambitions and ideas.

I’ve come up with the following new year’s resolutions:

  1. To write one or more books about my experiences
  2. To set up a social network for people living with cancer (mostly stage 4 patients but anyone who wants to can join)
  3. To finish my fiction novel and (screen)plays

On January 4th, we went to our friend N’s house for her baby shower (and b-day). It was great fun. She sent me a link for a writing workshop and I signed up right away. In February I’m following the novel workshop and in March the “From Blog to Book” workshop. I spoke to Lisa who organizes and leads the workshops and I’m really looking forward to it.

This past week I started working again, but mostly I’m thinking about how I can make a difference for other people living with cancer. I spoke with a top oncologist – who is a good friend of one of our friends – this morning. I intend to solve 2 problems: getting patients with metastases the information they need and making information about treatments available to this group.

He suggested that I connect with other people and organizations. He mentioned that it seems that most patient organizations are not very effective in making changes. He also explained to me that the treatment that saved my life (Mitomycine-C) is not commonly used anymore because studies could not identify for which patients treatment would be effective. Sometimes it worked and sometimes it didn’t. This world-famous oncologist told me that if I had come to his hospital chances are I would not have been given this particular treatment. I replied: In that case, I wouldn’t be here now talking with you then. He informed me that one of the reasons patients don’t get the information they need is lack of time (average of 7 minutes per patient at the regional hospitals and 20 minutes at the national cancer center AVL). A second reason is that there are a lot of rules for research studies (set by national government, European Union and ethics committees) which prevent the right information from being shared.

My own oncologist had told me that it worked between 60-80% of the time.

So I’ve decided to focus on patient advocacy and empowerment. I will also try to focus on these topics in my research, but I intend to do the research primarily to support this goal. So far I’ve read some publications and formulated my research questions. I intended to do a content analysis but am still looking for good tools to automate the content analysis, so any tips are most welcome.

For now, best wishes for all of you for a wonderful 2014. I will report back next week after my checkup at the AVL Hospital.

Here’s a quote from brainy quote:

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.
Helen Keller

Long time

Dear friends,

It’s been a long time since you’ve heard from me. I’ve been so busy (and feeling good) that I haven’t been in touch. April was a full month, filled with joy for me but also some sorrow (the bombing in Boston made me sad) about what’s been happening in the world. My dear friend Laurie was actually close to the finish line with her friend Judy when the bombings happened.

I’ve been feeling well the last few weeks. The cancer is decreasing and stable, and I am now on new medication. I had several job-related interviews in April. One involved going to a Hippo partner day and I saw two ex-colleagues from Capgemini, which was unexpected and fun, and of course the Hippo crew.

I’ve got a job – can you believe it! – working in The Hague for a government agency on a part-time basis, thanks to Mark from Peopleware, who set up the meeting. I’m working 2-3 days a week which is great. UWV has been very cooperative. Also thanks to Arie for his help with my letters!

April just flew by. My dad came to visit me on his way home from Houston to Malaysia. It was wonderful to see him. He’s doing well and has a brand new research center with state of the art equipment.

We met also met Larry and Marilyn from LA who celebrated their wedding anniversary in Holland, and stayed in Nancy’s appartment. I met them the afternoon of the Hippo partner day and my mom took them to our house for a brief afternoon tea. It was a rainy afternoon but we went to Laren and had some poffertjes (a dutch treat consisting of tiny pancakes with powderd sugar and butter! They are wonderful people and I really enjoyed meeting them. I also reconnected with my Zonta club and volunteered at the Fair Work festival with Evelien. Fair work helps young people who have become a victim of unfair employment, bordering on slavery. The festival opened with a dance – a merengue – and workshops. We were asked to help with the styling workshop which was a great success. The young ladies were busy with creating their personal mood boards – something I learned from the styling workshop for Tanaquil’s bachelorette party, with Jorinde, a stylist in The Hague. After the moodboards they could select clothing from the tables – very old fashioned items but they liked them nonetheless. That really opened my eyes – how little is needed to help these young women who have so little and often have a negative self-image.
My friend Esther treated me to a wonderful lunch in the Bakker’s Winkel in Zoetermeer. It was the same place my mom used to take us for a treat back when we lived there (1980-1981) and back then it was called Twenties. The interior was much the same, small marble tables (used for sewing machines) and a very old furnace in the kitchen. They added a glass house with grapevines, very light and airy. I really enjoyed it!

For our wedding day we met up with our friends Ronald and Mariette, and had a great Indian dinner at the Taj Mahal in Bussum. I discovered that I can’t handle spicy foods anymore, a side effect from the chemo I’m sure. The next day I attended an investing workshop by Marcus de Maria at the Krasnapolsky hotel; he is a great public speaker, but I found the selling of the training a bit too much. I learned a lot, but skipped the next session and had dinner with Nancy instead at Mappa, a nice Italian place John had introduced me to (for a Penn/Wharton dinner in March). On April 27th, my sister in law invited Victor’s family over for a wonderful family dinner in honor of Thib, Victor’s dad’s 89th birthday. We saw Paul and Isabelle and their daughter Catherine from Munich, and Robin and Miriam and their son Luis from Mallorca, and Arnoud. Sylvia was very busy helping her mom and serving us; she is now in LA doing research and staying with a friend. Sebastiaan came from Groningen and Annet and Barbara joined us as well; they left for France the next day.

We had a great Penn event at the SkyLounge with a view over Amsterdam on April 29th. I made lots of little cupcakes for Nancy and Anne to sell at Nancy’s house. April 30th was the big event: Queen’s day (my Dutch friends know all about this but for my international friends this might be interesting). This year was sunny but cold so I watched most of the ceremony on tv – first the abdication and then the crowning of our new king and queen.

May was a bit more relaxed for me. My mom celebrated her birthday in Paris with my sister. Victor and I went to the Louwman museum with our friends Tanaquil and Pieter and their children. It was very impressive and the Alfa exhibit was excellent. We had a wonderful meal afterwards, and then watched the war commemoration ceremonies (may 4th). Nancy took Barbara, Henriette and me to Beyonce’s concert, a special thanks to her friend Alan who made this possible. It was absolutely spectacular. She is amazing, and a true professional who gives everything to her fans! When she sang Survivor I just had to sing along. Jelle and Anne were there as well, and thanks to them I was able to sit for a bit. We had the best location, stage right, right next to the stage: Barbara and Henriette even touched Beyonce’s hand! – but it was a bit tiring to stand all that time. It was a great show and wonderful experience.

Unfortunately this month we also lost a dear friend – Henk – who was in his 80’s but sadly very sick. We remember him as a positive enthousiastic gentleman, and think of his widow often. On the positive side, Henriette turned 20 last Friday. And we have a few more birthdays this week.

I feel very lucky and grateful that I’m alive and kicking, to have my energy back and to feel good. I’ve been catching up on things that I haven’t been able to do for a while. Also I set up a new business (a one-woman show, as a friend calls it!) which I named AsIsToBe. And I’m trying to help two friends with their ventures, and having a good time assisting. Victor is very busy with his studies, he’s started on his thesis, and is also working as an assessor for part of the time.

I’m sure I’m forgetting someone or something but I will update you again soon. Tomorrow I have to get my calcium levels checked at Tergooi because of the risk of osteoporosis. Friday is my next appointment at AVL. I noticed some minor side effects today – also felt a bit tired – but that could be because I cleaned my car, and the bathroom, and did the laundry. It sounds a bit strange but it’s nice to be able to live a normal life again, and I’m enjoying it! Thanks for hanging in there with me. I will try to report back soon!

Time to share

Dear all,

Last friday I had another appointment with my oncologist. Because Victor is studying hard for his exam on Wednesday I drove myself and my sister Nancy met me at the hospital. It’s getting harder for the nurses to get blood from my veins, they have to use the little needles (they call them butterfly needles here) and the nurse had to try my right hand first, and then decided to try the left one. I was very relieved when the blood finally started to flow. Apparently I have narrow veins and thick walled arteries.

My oncologist seemed pleased enough with the results. The liver values are a tad higher (bilirubin at 12, white blood cells at 3.8L, other results aren’t in yet), but she says that’s probably due to the treatment I’m taking now. I will get two more cycles of the Xeloda (Capecitabine) but I can take them 12 days instead of 14 to reduce the sensitivity in my hands and feet. After these two cycles of three weeks she’ll start me on hormone therapy, which takes a few weeks to take effect. This wasn’t an option before because of the liver, but I guess we have the time now, which is good news. In 4 weeks time they’ll make new scans. So I have appointments on April 12th with another oncologist (Dr. Baars is attending a congress in London), an MRI on April 22nd (our wedding day), CT on April 25th, and the results on May 3rd. Add to that the Penn alumni drinks date at the Skylounge in the Doubletree hotel on April 29th, Queens’ day on April 30th, a seminar on investing on the 23rd and I’ve got April filled before it’s even started. Not bad for someone who intends to live in the moment and stopped using a calendar altogether a few months ago!

On March 17th and 24th I had several friends over for a high tea. Of course we made way too much food, but it was a lot of fun. It was nice to see friends together as well. Many thanks to my mom and sister for taking our dog Flo for long walks. I had also signed up for an introduction to yoga course at the Yoga Lounge in Hilversum (thanks to my cousin Ineke for the tip!). I really enjoyed it! It was a nearly private lesson since there were two students (including me!) and one teacher. She was great. I’m convinced now to sign up for more classes! The first session was challenging since my feet were hurting badly but I found Sunday’s session a lot more relaxing than I had expected.

Last night I had a sudden moment of sadness. What to do? What are my passion? Do I really want to write? Sometimes I do, and sometimes I think it’s a waste of time. What if I start yet another book and can’t finish it. But then I decided today that even that doesn’t really matter. I just ordered “The War of Art: Break Through the Blocks and Win Your Inner Creative Battles” by Steven Pressfield. Only I won’t get it until May 8th, because I also pre-ordered Star Trek The Next Generation Season 3 on Blue-Ray – yes I am a die-hard Trekkie (only TNG though), and that doesn’t come out until April 29th. Fortunately its region free, because the Downton Abbey Season 3 that nancy bought me in LA is not! Does anyone know how to make our Philips blue-ray player region free (its region free for DVD;s but not for Blue ray disks). Anyway, I’m rambling and didn’t even tell you the news. Got called by a headhunter. A small company in Amsterdam is looking for a Content Management lead and want to meet me. I told him I’m still recovering from an illness and if I can work (which I’m not sure about) I can only work part-time. They still want to meet me so I have a meeting on Thursday. In the afternoon I have a Liferay User group meeting, so should be fun! I will keep you posted!

Feeling good!

First of all my apologies for not posting sooner. I’m doing really well, feeling really great, and so didn’t think much about the blog, to tell you the truth. I’ve been eating a lot, it seems I’m hungry every two hours. This means I’m putting on weight, I weigh 51,5 kg now, so that’s fine, but my tummy is back and my pants fit snugly. My eyebrows and eyelashes are back and my hair is growing back very slowly.

Last week on Thursday I went to the Marienwaerdt Christmas fair with my mom, it was great fun. All the farm buildings on the estate were covered with snow and inside a few buildings, big log fires were burning. We had snow last week, but now it’s all gone. At home we burn wood fires every night, and light candles and incense. It’s all very cosy.

Last week I was busy getting our address book (well, excel sheet) up to date. I’m sure I don’t have everyone’s address, so if you’d like me to send you a card send me your snail mail address (sheilavangeusau at gmail dot com).

For those who are wondering what my days are like, usually on Monday morning I clean some part of the house and do the laundry. Monday is also a day when friends stop by. On Monday afternoons I help Khadija (who used to clean our house but stopped because she is 8 months pregnant) with her Dutch language home work. She has to take an exam to prove she can speak and write Dutch, but it’s actually quite difficult. So far we’ve done a chapter on birthdays, on insurance policies (aansprakelijkheidsverzekeringen) and on separating garbage. I like helping her. I’m also working on painting the woodwork in the house, starting with the attic. When it’s done I’ll post a picture. I walk Flo, our dog, once or twice a day. Other than that I read a lot, surf the internet, chat with friends and family via Whatsapp and sometimes I cook.

Victor is now preparing for his new academic adventure: a masters in tax law (fiscaal recht) which he will start in February at the University of Amsterdam. Because he already has a law degree, he has been accepted into the program. In about a year he will be able to start as a legal tax advisor. So if any of you are interested in having your taxes done let us know!

Some of you have asked me how I am doing emotionally. I haven’t always been very open about that on the blog, mostly because I don’t want to scare anyone and writing things down makes them stick, even if it is a feeling that passes quickly. It’s been quite an emotional roller coaster ride for me but also for Victor. It started when I had the first meeting with the oncologist at Tergooi and the first thing he told me was that he had bad news and I would not be able to get better. I later read that this happens in one case out of 20: that metastates are present at the first diagnosis of breast cancer.  I am not afraid to die, I have no fear and I don’t feel the need ‘to finish something’. But what makes me sad is the terrible impact it has on Victor and everyone who loves me.

When we saw my oncologist again in the second week of October, he had bad news again: the cancer in liver was increasing. This time it really shook me, and both Victor and I cried. I was afraid I wouldn’t make it to Christmas. And now I’m feeling really good, above all expectations. What was very hard for me was to accept that I couldn’t plan ahead. But I have accepted it. At the same time, I’ve decided that as long as I feel good I better make the most of life. So I’m making plans for a week, a month, and three months.

Since I am feeling normal again, I was thinking I would like to start working again (part time), but I wonder if I have enough energy to keep it up. It all depends on the results of the scans and the new medicine, which I will start end of December. Any suggestions are welcome!  I’m also considering pursuing a law degree myself at Erasmus University of Rotterdam. They have two programs that could be interesting: the Bachelor of Law and the Bachelor of Tax law (so I can help Victor). I completed the first year of the law degree at the University of Utrecht in 2003-2005, so I would be able to skip the first year. The idea of studying is a way of looking ahead. Even if I can’t finish it, it’s a prolongation of life. On the other hand, sometimes I think I should focus on my creative side, which I keep putting off.

Here are some pictures of us from last night:

sheila, victor & flo

Valentijn & Barbara

We are all really looking forward to Christmas, and we wish you a wonderful holiday season!


My colleagues from Unisys were shocked to hear the news. My contract just ended on June 30th, and I had informed everyone I would start again as an independent contractor.

I had been a bit worried about the fact that I was too late to sign up for disability insurance. In Holland, if you’re self-employed, you can purchase this insurance from insurance companies. However, you need to prove that you’re healthy or you don’t qualify. I was too late, since I just started working for myself again on monday. Aletta from Zonta told me not to worry, since these insurance policies are not much use anyway. And I am planning to work when I can. Fortunately, I have an assignment which I can work on parttime. Also, I have good health insurance which covers almost everything (I hope).

Our healthcare system is good here, and the insurance is national, which means everyone is covered (as long as you pay your contribution, which in my case is 120 euros per month, plus approx. 4000 a year if you are self-employed).

In times like these, it’s good to focus on what really matters. I can take the time to get better without worrying about my work. I plan to work hard at getting better.