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Ambassador for the NFK?


Last week I received an invite for a conference for patients with metastatic breast cancer at the end of April in Philadelphia, the city where I went to college. It is a yearly event organized by Living Beyond Breast Cancer, a non-profit patient organization based in the US. Since then I’ve been thinking about going. Some of you already encouraged me to go, and Nancy is prepared to travel to Philly to attend the conference with me, so I won’t have to go alone. Today, my colleague and friend Yvonne encouraged me to go as well. So I’ve decided to go! The ticket is cheap and the conference itself is only 75 dollars. The hotel is not too expensive either, so no excuses there! So I’ll book my ticket this week and start organizing a trip to Philly, a place I called home for four years (ok, it was a long time ago, but still!).

I’m still a ‘board member’ of the Penn/Wharton club of The Netherlands and we’re planning to do a bid to organize the Wharton Global conference in Amsterdam in 2015. So who knows, perhaps I’ll have a reason to visit Penn as well. I’d love to see some of my East Coast friends while I’m there, but the time is short, so we’ll see.

This morning I had an interview in Utrecht with a manager and a projectleader from the Dutch federation of patient cancer organizations (Nederlandse Federatie van Kankerpatientorganisaties – NFK). I had applied for a volunteer position as an Ambassador to help people with cancer who have questions about (going back to) work.

Thirty people had applied to volunteer – they were counting on fifteen – and they are willing to accept everyone, and are meeting all the applicants, which I think is to their credit. So often, people judge others just on the ‘outside’ and the fact that they’re taking time to meet with each person who applied is really well done. While I was introducing myself someone was playing the accordeon outside – it was very strange. It turned out not to be an April Fool’s joke at all (that’s what I thought); no, the empty offices next to the NFK were now occupied by members of the elderly society (can’t quite think of the right translation but it’s close enough)  who were now playing the accordeon.

It was an interesting conversation and it was nice to finally meet some people who are working in the field. They are offering a training for all the volunteers at the end of May and also will meet with us four times this year to hear about our experiences. The work entails meeting with people – employees, businesses and patients – and answering questions they may have or pointing them in the right direction. It sounds interesting and I’m looking forward to the training.

After the meeting, I went to The Hague to finish my presentation and meet with my colleagues only to drive back to Utrecht two hours later for our meeting with other agencies. I presented the preliminary results of our Vision for data exchange and it was well received. At six pm, I drove home in my convertible in the sun – it was nearly 20 degrees centigrade. April has begun well!

Tomorrow I have a bone scan at the hospital and hopefully some time to relax in between the injection and the scan. Next week I’ll update you on the results. Enjoy spring everyone!

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A modern-day hero


Our internet and social-media driven society yearns for heroes, no less than the Greek or Romans did before us. A hero today is nothing less than the demi-god of those days, although the parentage of our modern day heroes cannot be traced back to the gods themselves. We value our heroes for their courage and bravery in the face of threats and adversity.

The Olympic games is the stage where many of our champions fight for a medal, for many the highest achievement possible. In a popular viral video from a Dutch talent show a 9-year old girl astounds everyone with a beautiful rendition of Puccini’s O mio bambino caro. When she is asked by the professional jury what she wants to be if singing didn’t work out, she answered casually: I guess I’ll go to the Olympic games.

During the Winter games in Sochi, we were rooting for our Dutch speed skaters, who managed to win medal after medal until we were wondering: what happened to the competition? Each day the nation was mesmerized by what our speedskaters had accomplished.

This year I intended to follow the Paralympics. Primarily to follow Bibian Mentel, a Dutch snowboarder who has been a source of inspiration to me. However, before I knew it, the Paralympics were finished.

During these Paralympic games, Bibian Mentel won the Paralympic gold medal on the snowboard cross. She has won all the world cup events this season for the snowboard cross so it wasn’t a complete surprise. But perhaps her greatest achievement in the Paralympics was getting the snowboard crosss on the program this year.

I’ve been following Bibian Mentel (online) for a few months now. She is a most remarkable woman. She was working on qualifying for the 2002 Salt Lake City Olympics when she was diagnosed with bone cancer. Four months before the Olympics, her leg was amputated, but 7 months later she became national snow boarding champion in The Netherlands, on one leg (beating the ‘regular’ competition). Before that, she was champion for 6 years in a row.

 

Since then, Bibian has dedicated herself to working with children with handicaps teaching them how to snowboard and coaching them in the various competitions. Her Mentelity Foundation has a clear vision: to encourage children and adults with physical impairments to focus on what they can achieve. On and off the slopes.

Together with the Dutch NOC-NSF organization, Bibian Mentel has fought relentlessly to add snowboarding to the Paralympic Winter Games. This year was the first year the para-snowboard events were included in the program. Besides competing in the event and winning a gold medal, she is also the coach for the ski- and snowboard-team.

This week Bibian will be honored in Sochi with the Wang Youn Dai Award, also known as an IPC award, along with Australian alpine skier Toby Kane. This award recognizes two Paralympic sporters for their contribution to society. As the short film The History of the Paralympic Movement shows: “…power athletes create a more inclusive society and inspire the world to believe that anything is possible.”

What few know about Bibian Mentel is that she is also a five-time cancer survivor. Her cancer has returned and has metastasized, and she is living with it every day. She is a true survivor and a role model for anyone who values persistence. For her, the illness that resulted in her amputation will most likely also cause her death. But she is always smiling, facing her enemy with courage and determination.

As Benjamin Franklin said “Energy and persistence conquer all things.” And so my hero Bibian Mentel shows us that the weapons of the modern day hero-warrior are tools of the mind as well as the body: persistence, energy en optimism. For all of us, these true heroes really do make us believe that anything is possible.

If you’d like to read more about Bibian Mentel, please check her website at http://www.bibianmentel.com/ or the Mentelity Foundation.  Bibian Mentel’s book – Met mijn goede been uit bed – is available via the Mentelity Foundation (in Dutch only) by sending a mail to info@mentelity.

 

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Another hospital visit


I find it increasingly difficult to write about myself in this blog. But today is a much needed update about my medical situation. First of all, last week on Wednesday I had an MRI-scan and CT-scan at the hospital. My last scans were in October 2013, so almost 6 months ago. Since then, the bloodtests have shown that the tumor markers have been relatively low, and the liver values stable.

This time, I was very tired after the scans. I just wanted to sleep right after the scans. It might be because I’ve been going to bed too late lately, but I think the contrast fluid had something to do with it. Also, the IV needle was a bit painful as it pressed against my wrist bone. The young male nurse who had placed it was very nice, I recognized him because his picture (and that of other colleagues) decorates the fence outside the hospital around the area where they are building a new addition. So each time I go in I see their faces. Nice to know they photographed real doctors and nurses instead of models!

Yesterday my specialist shared the results with me. There were no tumors visible on the MRI scan, so the hormone therapy did its work. I find it quite remarkable that the cancer in my breast has basically disappeared, without any form of surgery or radiation. It makes me wonder if hormone therapy might be a way to get rid of the cancer for other women as well?

The CT-scan showed a few tumors in the liver which remain stable. My specialist showed me the photos when I asked to see them. It’s a bit hard to see, since the CT-scan consists of horizontal cross-sections of the torso which are shown in 2-D. She pointed out that there were several lymph nodes which looked swollen. At least it is cause for some concern and she wants to have another CT-scan made of the intestines and stomach as well. So my scan is scheduled for April 30th.

In addition, I asked for a bone scan, which is scheduled for April 2nd. I’ve been having some pain in my pelvis. It could just be the result of my new dedication to running (I try to run once or twice a week) in which case it might just be muscles aching. Or it could be a side effect of the letrozole (the hormone therapy – which is actually a hormone inhibitor). Just to be safe, I’m getting a photo and a bone scan.

Sheila jogging in Eemnes
Sheila jogging in Eemnes

In any case, she told me not to worry. She’s keeping a close eye on my health and if there is cause for concern she will switch to another type of therapy.

So altogether, good news: the tumor in the breast is no longer visible and the ones in the liver are stable. I will keep you posted as the results come in.

 

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Drug company: Ailing 7-year-old Josh Hardy will get medicine – CNN.com


Update from CNN: Josh Hardy will get the medicine he needs after all!

Kudos to @chimerix and Ken Moch for helping this boy and his family! I think it is an admirable decision by this CEO to help this child, even though he had previously stated their position. It is also a reminder that no matter what, it sometimes is necessary to change one’s point of view.
http://edition.cnn.com/2014/03/11/health/josh-hardy-drug-study/index.html?hpt=hp_c2

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A drug company denies a drug to a dying child


Just scanning Twitter I came across this story of 7 year old Josh who is a 4-time cancer patient now dying of a virus for which there is a cure. Here is a beautiful video about Josh and an interview with his mom on CNN:

Josh Hardy’s mom on CNN 

[I’m having trouble embedding the CNN video, so included the link.]

The drug brincidofovir is being developed by @chimerix and is in de last phases prior to marketing authorization, which is expected by 2016. This company is denying this drug to Josh because if it helps one patient, it must help others as well. I suspect that the compassionate use of this drug in this phase could result in the risk that the drug is not accepted by the FDA and other authorities. This is because all ‘adverse events’ – from minor side effects to deaths of patients – have to be reported. When patients are close to dying and get this drug, if they die, it may prevent the drug from being approved even if the deaths are not caused by the drug. But there is a way out of this catch 22. 

There is a movement that could make a difference for patients with incurable cancer and for the drug companies that would help them if they could: it is called myTomorrows. This social enterprise aims to make drugs available to patients who need them when these drugs may not (yet) be approved for use. What if myTomorrows were able to provide brincidofovir on behalf of Chimerix? I’m just speculating now, and of course money is needed to be augment the limited supply that Chimerix has currently.  I believe this could be a win-win situation.

Read here what myTomorrows is all about. We are here to help!

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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 Overheid.nl). 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 vzvz.nl offers an online registration form so that patients can indicate which professionals can access their health records.

Two initiatives seem promising: Medischegegevens.nl 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!

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Kom naar het kinderconcert on March 9th (Come to the children’s concert)


Zonta organiseert op zondag 9 maart een prachtig kinderconcert in Singer Laren. Dit wordt echt een hele leuke dag!  Het concert is voor kinderen vanaf 4 jaar en duurt iets langer dan een uur. Het Artonis Piano Trio speelt prachtige ontroerende muziek en het Circus Amersfoort – dat vooral bestaat uit jongeren tussen de 16 en 18 jaar – zal ons vermaken met hun acrobatische toeren. Het concert is voor jong en oud en kan goed gecombineerd worden met een bezoek aan het Singer museum, waar nu de tentoonstelling van Mauve tot Mondriaan loopt.

ArtonisPianotrio
ArtonisPianotrio
kindercircus amersfoort
kindercircus amersfoort

140102 circusconcert def

Alle vrienden die een kaartje kopen zijn van 12-14 welkom bij mij thuis voor een lunch/high tea. Ik zorg voor lekkere hapjes en drankjes. Als je kinderen onder de 4 hebt, laat het even weten en dan zorg ik voor oppas. We hebben een speeltuin naast ons huis en er is een hele mooie speeltuin in Laren (Ons genoegen) waar we ook naar toe kunnen.

Tickets kan je bestellen via mij per mail sheila.ghosh at me.com. (Dit om spam te voorkomen!).

Ons goede doel dit jaar is Femmes for Freedom die vrouwen helpt die gevangen zittten in een huwelijk. Je zou het in Nederland of Europa niet verwachten maar veel vrouwen die religieus getrouwd zijn kunnen niet scheiden zonder een geldsom aan de man te geven, zelfs als hij hen verlaat. En vaak wil de man dan nog niet scheiden. Mannen mogen meerdere vrouwen trouwen volgens deze godsdienst dus die hebben er geen last van. Deze dappere vrouw wil deze ongelijkheid en onrechtvaardigheid ter discussie stellen en heeft daarvoor de hulp van anderen nodig om de cultuur en wetten te veranderen. Dit goede doel wordt dit jaar door alle Zonta clubs van Nederland gesteund. 

Ik hoop dat jullie massaal gehoor geven aan mijn oproep want het wordt een hele leuke dag! En ik vind het erg leuk om jullie dan weer te zien. Willen jullie dit doorsturen aan vrienden en collega’s, verenigingen of scholen?

Hopelijk tot ziens op 9 maart!!

For my international friends:

On Sunday March 9th, my Zonta club will be giving a Children’s concert at our local museum Singer Laren. The concert will be held in the Theatre which seats 400 people, so we have lots of tickets to sell. But since most of you live very far away, I can’t imagine that you could come here just for that!

The charity we are supporting is Femmes for Freedom. The founder is a Dutch woman of Pakistani descent who experienced imprisonment within her marriage. She was not allowed to have friends or even see her parents. When her husband left her, she could not get a (religious) divorce. Many women have find themselves in this predicament. The culture and religious laws will need to change, but the things she has been able to accomplish already are very impressive. So spread the word, and if you know of anyone in this situation, you can point them to the Femmes for Freedom website.

Take care,
Sheila

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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 www.logius.nl).

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!

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A new path


Dear friends,

After hearing all your comments on making my blog public, I decided to update the blog so that it can be found by search engines. As suggested by some of you, I have anonymized a few names already and can do so for you as well, just let me know. Yesterday I purchased a new domain name for my blog: the new address is http://www.sheilaghosh.com. The old address will point to the new one.

My goal is to find others who have metastasized breast cancer and who like me aim to make the best of life! So please spread the word! I’m also active on twitter (@sheilaghosh) and Facebook (www.facebook.nl/sheilavangeusau)

I’m hoping that the BorstkankerVereniging Nederland (breast cancer association of the Netherlands) will organize another meeting this year in October for patients with metastasized breast cancer – I certainly plan on going and hope to meet some more fellow survivors so we can create a stronger support community for other women with this fate.

Have a great weekend!

Sheila

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It is time to stop the needless suffering of animals


Dear friends,

I hope you will forgive me for this sad post. I have been worried about animals for a long time, and now is the time I would like to share my grievances with you to see if together we can make the pain stop. I truly believe we live in a time where more than ever we can make a difference to the world just by sharing and taking action, however small. Last time I wrote about the Tara Bodong foundation, a few very motivated women who are helping the Tibetan families and girls who live as outcasts in the province of Arunachal Pradesh, an area where no one can come without permission. This time I wish to share my thoughts with you about the needless suffering to animals.

Victor told me about some movies that have been circulating on Facebook about dolphins being slaughtered in Japan and on the Faro Islands. On the Faro Islands the people kill hundreds of dolphins (grinds) in a yearly festival.

The animals are wounded and slaughtered in a brutal way. The Islanders, however, believe they are keeping the Viking tradition alive in this way. The bay turns red with blood and the animals are extremely frightened. The result is a grim and desolate landscape of dead dolphins. When Victor told me about this, he was very emotional. I think it is absolutely wrong to hurt animals in this way. The movie The Cove which won an Academy Award in 2009 has brought this bloody drama to the screen, I have yet to see it.

dolphin Faroe_whale_massacre

Seashepard is trying to do something about this barbaric and needless slaughter. This organization was founded by Paul Watson in 1977 and aims to save the life in our seas and ocean.  They have started a campaign to stop the bloodshed. Please spread the word so that we can hope to do something about this.

Dolphins are lovely creatures, incapable of hurting anyone or anything. They are highly intelligent, communicating by sonar, and live in social groups. When I lived in La Jolla, we saw many dolphins whilst kayaking. I felt a strong sense of life and beauty when I saw them. That why it pains me so much to see them being hurt in this way. Please spread this post to anyone you can to tell them: yes we can do something about the suffering.

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