Category: Breast cancer

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

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

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

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

Dear friends and family,

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

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

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

yearreport 2015 photos

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

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

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

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

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

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

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

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

Lots of love and happiness,

Sheila en Victor

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

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

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

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

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

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

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

Lots of love for all of you!

Dear friends,

I’m very sorry about this. There’s an option in my blog to send a message directly to the blog. This happened this morning by email. I’ve removed the post and the link but if you’ve received a mail with a link DO NOT CLICK on it.

As for me, I’ve been working far too hard. I’ve decided to slow down a little.

Nancy will be visiting next week. And on Wednesday next week I have another check up.

I’ve gained too much weight and now need to change my diet and work out more. Started doing a bootcamp lite here in the neighborhood and plan to start running again at a regular schedule.

Take care,
Sheila

On Sunday our dear friend Marc passed away. His sister and her husband had taken him back to their home from Canada. We had a chance to say goodbye to him on Saturday. He was tired and thin but still quick-witted. Sunday, his son arrived from Canada, just in time to see his dad one last time and then Marc died. He really stayed alive to see his children, although unfortunately his daughter couldn’t get here in time. I hope they will be okay, and I hope they know deep in their hearts how much he loved them. Marc supported me by mail when I got very sick. But his cancer kept growing while my medications worked. He was a reclusive man, who preferred to do things his own way. The last few weeks he thought a lot about his children and wanted to care for them. His sister did everything she could for him, caring for him every moment and arranging all the things he wanted to take care of. He had very few things in the end that he needed. A few pictures, his laptop. But even that he didn’t need anymore. It made me realize once again how very lucky I am, not only to have lived so well after my recovery but also to be able to enjoy life and being with my family and friends. Once I was living on the other side of the world, but I’m glad to be home. As for my health, everything is stable and I’m doing really well. I am working more hours, and doing more activities, but altogether I’m very happy. Tomorrow I get the results of my latest blood test and will give you an update.

Today, our country is in mourning. We mourn the passengers and crew who died needlessly when MH-17 was shot down over the Ukraine by pro-Russian separatists. Our Minister of Foreign Affairs, Mr. Timmermans held an emotional speech at the UN, to repatriate the bodies of the victims. Today, at 4 pm, a minute of silence is held throughout the nation, as the first 40 wooden coffins arrived at Eindhoven airport. As I write this, the procession of 40 hearses is arriving at Hilversum. The coming days, as more flights arrive, the same ceremony will be repeated: a single bugle call – the military farewell – and each coffin is carried by military personnel from the plane to the hearses.

See the Dutch report here. See the CNN report here.

We did not personally know anyone on the plane, but many friends and colleagues did know one or more of the 193 Dutch victims. Many of them families with children who were on vacation. Three families lived nearby, in Hilversum. But there were victims of all nationalities, and we mourn all of them today.

As I write this, the procession of 200 hearses is arriving at Hilversum, where the identification of the bodies will take place. There were so many people along the roads, paying their respects to the victims. Not all victims have arrived yet. It really could have been any of us, everyone here is in a state of emotional shock.

All throughout the land, flags are half-mast. Here’s a picture of our flag at home:

See the In Memoriam here: rouwadvertentie-mh17

I find some solace in the words of John Steinbeck and Patrick Swayze:

John Steinbeck, American author
It’s so much darker when a light goes out than it would have been if it had never shone.

Patrick Swayze, American actor
When those you love die, the best you can do is honor their spirit for as long as you live. You make a commitment that you’re going to take whatever lesson that person or animal was trying to teach you, and you make it true in your own life… It’s a positive way to keep their spirit alive in the world, by keeping it alive in yourself.

both quotes are from http://dying.about.com/od/thegrievingprocess/fl/Words-of-Inspiration-Grief-Loss-and-Mourning.htm