Author: Sheila Ghosh

Enterprise and IT architect, patient advocate for metastatic breastcancer and creative writer
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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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Feeling blessed


Lately I’ve been reading more blogs by fellow stage 4 breast cancer survivors. I’ve been using Twitter to find interesting people to follow. I’ve been reading Vederzwaar’s blog. She is a young mother who is very passionate about following others and helping others. Very inspiring. She also has links to other women’s blogs and suggested that I could participate in the Amazones, a website for young (at heart) women with breast cancer. When I was first diagnosed, I used the forum and signed up but I am sorry to admit I had not used the site much afterwards. Mostly because the posts that were interesting to me were from a long time back.

Looking at the site again and logging in I found a number of wonderful messages waiting for me, which I had not seen because I didn’t know how to get notifications (still looking). 

I’m also following #CaseofDees who is very active for Borstkankeractie (breast cancer action). A friend of a friend suggested that I could contact her. Through Vederzwaar I also looked at the blog DikkeRozePech (big pink bad luck), a very fitting title for the blog of another strong woman, who spoke at the seminar #hoopenvrees organized by the Dutch Breast Cancer Association (which I attended last year). It made me realize that there are a lot of women like me out there. But perhaps I have been luckier than I could have imagined because I actually can live a normal life, without pain. I even have work! Who could have guessed a year ago that I would be so lucky. Yes, I am truly blessed. Now time to figure out how I can help others with metastases. Since I’m doing so well, I wonder how I can even think to help others who are suffering so. But as Geshe Pema Dorjee says: to reduce the suffering of others, to make them happy, is to give meaning to our existence. 

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Geshe Pema Dorjee speaks in Hilversum


Dear friends,

On Sunday and tonight I had the privilege of hearing Geshe Pema speak. He is a Tibetan lama who has a very humorous and wise way of speaking. He shared with us how to find peace of mind in turbulent times. It starts with helping others rather than ourselves. The key to this is self-confidence which we can achieve through morality – doing right and finding the truth. When we are self-confident we can stop thinking of negative and disruptive emotions such as anger, hatred, ego, jealousy and greed. Instead, focus on your ability to do good and help those who suffer the most.
Pemala, as his friends call him, has traveled to remote villages in the foothills of the Himalaya for H.H. The Dalai Lama to revive the ancient Buddhist tradition bodong. There he found so many people living in isolation, in poverty, suffering from cold and hunger. He and his friend Siri Weirum are doing everything they can to help stop the circle of poverty. The Tara Bodong foundation raises money to help the young girls who have no prospects other than raising children from the age of 15 and working hard to feed them. They are building a school to educate the young girls so that they can help improve their communities. These villages are very isolated, it takes 3 days by car and then two days walking to reach them. They have no sanitation, power and little food. Please read more about the Tara Bodong foundation and Siri and Geshe Pema’s work on http://www.tarabodong.nl. Every cent goes directly to the project. All involved donate their time, from teachers to the architect.
A very inspiring cause. They need to raise 360.000 euro’s so anything we can do to help makes a big difference!

I will try to do my share.
Till next time!

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Checkup


On January 11th, Victor and I had visited the exhibit by Henri Le Sidaner here in the Singer Museum in Laren. Le Sidaner worked around the turn of the 19th century in northern France. He combined impressionism with intimate compositions (called intimism) and painted some very beautiful scenes, with muted pastels, twilight with pink shimmers and canals along pretty villages. Very inspiring.

Last Wednesday I went to the hospital for my check-up. My mom met me there, so I had some company. The checkup went smoothly, all values were fine. It seemed to me the liver values were a bit higher but all within range. My oncologist also checked my lungs, liver and thought it all looked and sounded ok. My next appointment is in two months, March 12th. The week before I am scheduled for a CT and an MRI scan again.

Afterwards, my mom and I went to Nancy’s place for a bit. We stopped by Leafde (a nice little store near Nancy’s house) where I bought two small gifts for colleagues who just had babies (two dads!). My mom took me back to my car and we drove to a store on the way back. I parked my car on the street there and bought a nice jacket and silk blouse on sale. But when I got back to my car someone had driven the mirror off my car: it was hanging by a few wires. Fortunately the garage was on the way home (my mom took the tram back into the city) so I didn’t have to drive too far without a mirror. The guy at the garage taped everything up with black duct tape. That night, Victor and I went out for a lovely dinner together.
Thursday I worked and Friday I met a friend of mine for coffee. She told me about a dear friend of hers who had just passed away in November. She had cervical cancer and had fought bravely for over 3 years, but in the end got pneumonia and couldn’t get better. There’s nothing one can do or say to help, but I can only imagine the hurt her family must feel.

This past weekend I had a chance to relax. I wrote a little, drew a few pictures, did some laundry, went for a run.

Since then, Victor’s been studying hard for his exams. Friday is a big exam day, and next week on Tuesday he has two exams. I hope all goes well.

Nancy is in LA now, working hard on the Grammy’s and a special show the day after. I’ve been thinking about our trip last year and how special it was. Time has gone by so quickly, I wonder how this coming year will be for all of us. Tomorrow is Nancy’s birthday – here’s a happy b-day to Nancy from all of us!

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2013 in review: Thanks for reading my blog!


I wish to thank all of you, but especially Wendy, Marijke S., Annet L.and Paul AvG for commenting on my posts. You rock!!

Please keep up the good work and keep giving me feedback, it really helps. I intend to start writing my books via my blogs, so if you know anyone who might be interested, please spread the word!

Thanks for reading my posts and best wishes for 2014,
Sheila

—-
The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 4,000 times in 2013. If it were a NYC subway train, it would take about 3 trips to carry that many people.

Click here to see the complete report.

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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
Read more at http://www.brainyquote.com/quotes/topics/topic_newyears.html#VwJza6IXL0Fh27Dw.99

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Visit to Malaysia


Dear friends,

I’m a bit behind with my posts, so I will send a few in a row. This one is about my trip to Malaysia in December with my sister. We stayed with my dad and spent some real quality time together. The first few days we stayed in Ipoh and visited local sights, such as the Buddhist temples in the caves and Lost World of Tambun, a water park near our dad’s house in Sunway city Ipoh. They had natural thermal pools, a wave pool (we were the only ones swimming), slides, and a small zoo with Siberian tigers, snakes, monkeys, deer, ancient turtles, birds etc. The animals were very well cared for and beautifully landscaped. The monkeys lived in the wild but came to the zoo to eat.

The first weekend our dad drove us to Georgetown on Penang where we met our friend Bommy.  It was lovely to see her again and we had a great time.

Rasa Sayang Resort
Rasa Sayang Resort

We stayed in a beautiful resort called the Shangri-la Rasa Sayang. It was absolute heaven. We also visited Georgetown itself which is a UNESCO world heritage site. It has many colonial buildings some of which are a bit run down.

Our dad is doing well; he’s working as a professor of Geophysics at UTP (Technical University of Petronas) where he has his own research center with about 15 Ph.D. students.

Dr. Deva's Center for Seimic Imaging
Dr. Deva’s Center for Seimic Imaging
Nancy and the professors at Dr. Deva's Center for Seimic Imaging
Nancy and the professors at Dr. Deva’s Center for Seimic Imaging
Dr. Deva's Center for Seimic Imaging at UTP
Dr. Deva’s Center for Seimic Imaging at UTP

Next, we went to Pangkor Island, where our dad (dr. Deva) took us to the Pankgkor Island Beach resort. It’s a beautiful place, with monkeys, hornbills and a type of hog or boar who loved the tropical fruits that were meant for the hornbills.

My dad & me
My dad & me

Here we are reading! Nancy and I also kayaked one afternoon when there were quite a few waves. Way back in the 90’s when I lived in La Jolla I would kayak every weekend, can’t believe how long ago that was.

We headed back to Ipoh where my dad lives and the next day (Sunday) returned to KL. I was a bit sick (something I ate) so Nancy helped me pack. In KL I met my friend Michael Chan whom I had not seen for 25 years! We were friends at ASH (High School) – see my Facebook page for photo’s. It was great to see him again and meet his wife Joanne and their sons Orion and Aron. Great kids!

Nancy returned to Holland the next day while I left on Tuesday the 24th (day before Christmas).

At the Coffee Bean
At the Coffee Bean

I will miss Malaysia and miss my dad as well!

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Looking back


Dear friends,

On november 1st, our much loved dog Flo passed away. It was really hard on me, and also on Victor, my sister, mom and kids who loved her dearly.

Muddy Flo
Muddy Flo

We will miss her so much!

A week later my sister showed me an article in the New York times about the untimely passing of my mentor: Stanford professor Cliff Nass. I had just had the good fortune to see him in September in Paris. We had talked in the bus  on the way back from the special Seine cruise. It was so good to see him again after 20 years (I graduated from Stanford in 1993). He was a test driver for the automated Google car and could talk very passionately about his students and his research on multitasking, the human brain, communication and driving automatic cars.

A week later I heard one of my colleagues at Unisys had passed away as well. Hans was a very jovial and kind person, always ready to help. He was an avid actor and Shakespearian, which really impressed me. I had worked with him a few times, we’d had a chance to talk during those days and he will be much missed by his family and colleagues.

In November I connected with dr. van Weert (whom I had met at the patient conference on Oct 12th). She is an Associate Professor in the Department of Communication at the University of Amsterdam and is willing to help me with starting a Ph.D. She invited me to a research meeting about patient-doctor communication at the AMC hospital, hosted by the research group in Medical Psychology. It was a very interesting meeting, and afterwards I briefly met some other Ph.D. students. I plan to start my research in January and I want to focus on communication about metastatic cancer. I plan to start analyzing  the media effects of charity campaigns (think of Pink Ribbon type campaigns) on self-efficacy and fears of metastatic breast cancer patients (in online discussion forums).

End of November, I went to our local farmers market in Eemnes with a good friend and I bumped into friends from Huizen. The farmers market is organized by Ria who used to be our next door neighbor but now lives on the Meentweg in Eemnes (see the Blommenhoeve for more information).

In early December I was able to complete my work and deliver the new Architecture for Digikoppeling. I’ve been asked to continue on the project and was asked for another project as well. We had a really fun dinner and game with the whole team and I really enjoyed it!

On December 4th, I had another checkup at the hospital. My friend G joined me and waited patiently as I went to get my blood test done and waited for the doctor. Fortunately all was well. The liver showed slightly higher levels but that could be due to the medication (Letrozol) that I’m on. My next appointment is in the middle of January.

On December 7th, I left Holland and arrived in Kuala Lumpur on the 8th. I met Nancy at the airport and together we took the KLIA Express into KL. The next day we went to Ipoh and my dad picked us up at the train station. It’s been really good to see him. He lives in a nice house in Ipoh, near hot springs and a water park. It’s the rainy season here so it rains hard for a few hours each day. This weekend we’ll visit Penang, and we hope to meet up with our friend Bommy.

Next time I’ll upload some pictures. Take care!

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Public or not?


Dear friends

I have kept this blog private since I mention certain people by name. I would like to ask your opinion on whether I should make the blog searchable. The reason I would like to open it up is just in case someone else is searching for information that is hard to find (such as Mitomycine-C) and I might just be able to help by offering my experience.

I would appreciate your feedback: please respond to the following poll.

Thanks!

Sheila

PS this is what I look like now. As you can see, my hair’s been growing. Here I’m enjoying Nancy’s ice-cream in the Vondeltuin in Amsterdam (september 2013).

Sheila

 

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