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California sun!


After working on the Grammy’s with Nancy for two days, we had some time off yesterday and today! Today is beautiful weather, warm and sunny, 20 degrees C. Here I am in the sun outside the coffee bean.

So the Grammy’s were quite an experience. We started around 9.30 on Saturday and Nancy’s job was to manage the artists doing the Tributes, so the combinations including Elton John, Mumford & sons, Mavis Staples and Brittany Howard. Also Sting, Bruno Mars, Rihanna and the Marley Brothers. There was also the finale with LL cool J, Chuck D, Z-trip, Tom Morello and Travis Barker. Nancy had arranged a hotel room on Saturday night which was great because I was pretty tired by 6 pm. She worked till 9 and we had a bite to eat at Wolfgang Puck.

Sunday was the big show day. in the morning everyone had to be on time for the big rehearsal. Because it is a live show, the timing is crucial. At one point on Sunday Elton wanted to talk to Tom Morello so I took Elton’s manager to Tom’s dressing room which was in the Nokia building. We had to take a long underground tunnel to get there and took Tom back to Elton’s dressing room. I mostly helped Nancy by keeping track of which stars entered the Staples building on Sunday. I saw Chick Corea and Stanley Clarke. Also Mr X (Jay-Z) and Nancy saw JLo on the red carpet.
During the show, there are many artists and presenters who all need to be ready at the right place and time. Johnny Depp was a presenter and he was late. Nancy saved the show by getting him to the stage on time, by taking a golf cart down the ramp.
We also helped Mavis Staples who was a lovely older lady who had some trouble walking. It was fun to see Nancy’s colleagues Patty, Vanessa, Chantel, Jacky, Dana and many more who all were really sweet.
We must have walked many miles those two days so I feel that sitting here in the sun is a well deserved break for both of us! Some of my friends on the East Coast have just had a blizzard and snow storm, power outages and freezing cold! I’m thinking of you and hope spring will come soon!

I’ll keep you posted!

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Forgotten, lost and found


Dear friends,

I had promised to write you after my appointment at the hospital but to my shame I missed it. I thought it was at 3 PM but it was in the morning so for the first time in my life I missed a doctor’s appointment. When I called it was no big deal and I had my appointment for the 26th and 1st of March already lined up. I asked the secretary if I still needed to come to have my blood levels tested but she checked with the oncologist and it wasn’t necessary.

Apart from prickly fingers (it’s called the hand-foot syndrome where you get red hands and/or feet that feel sensitive to hot and tingling sensation) and the occasional nausea I don’t have any side effects.

On Thursday I went to visit Alice. Victor called me when I had nearly arrived to ask about the keys to his car. I had taken the spare one but he couldn’t find his keys and he had to go to class. Fortunately he found them in time or else I would have had to turn back.

It was great to see Alice, her mom and stepmom. And Arthur has grown a lot – he weighs what a 3 month old baby should weigh, even though he was born at 33 weeks. He’s a really beautiful and sweet baby, likes to be held by his parents and when sitting in his seat he smiles and is very quiet. Perfect baby!

Alice is doing much better now that her dosage of Oxyplatin has been lowered. She is also taking Xeloda (Capecitabine) but a bit more than I am because she is taller. We talked about all the things we are and have been going through and had a few laughs as well. She was quite an interesting case for her hospitals because few people under 5o have colon cancer and combined with pregnancy made her something of an attraction. Fortunately she is doing better now, and has chemo until April. We talked of writing a book together which seems like a fun and useful thing to do in the coming months.

Later on Ingrid and Erwin came by and we had a nice talk. But at night I felt tired and had a slight fever.

That night I repacked my suitcase, following my husband’s advice that I could always buy what I need in LA. So I left the casual clothing and backed what I consider the bare necessities (bathing suit, dress, silk shirt, toiletries, 1 pair of nice shoes, 1 pair walking shoes, 2 pants, 2 shirts and underwear) but he considered it overkill. “You only need your toothbrush and underwear” I remember Victor saying. Unfortunately, I couldn’t find my prescription sunglasses anywhere!

The trip to LA went smoothly. Nancy had arranged a business class seat with her airmiles so that I could sleep. It was great. The vegan meal (closest they had to vegetarian options) turned out to be a huge green salad followed by stir-fried veggies, broccoli and rice. I was pretty full and had enough greens to last me a week. When I collected all my personal belongings, just before we landed in Chicago, I lost my iPod nano in the chair. Took the chair apart but still couldn’t find it. The cabin crew helped me, even the purser sat on the floor to try to get to it but no luck. I waited till everyone was off the plane and then asked the customer service lady. She asked the mechanic to help and he went into the plane with her. 5 minutes later the purser triumphantly held up a small item, “look what we found!” and yes, I had my ipod back. Nancy had given it to me years ago, so it was great to have it back.

The transfer in Chicago went smoothly, got a break at the passport control when they took us to a special newly opened lane. Only the security check took forever and people got somewhat irritated having to wait so long (took an hour). The plane was delayed waiting for baggage, so it was no problem. The flight to LA went smoothly. At Schiphol I bought a book at the last minute called “The Unlikely Pilgrimage of Harold Fry” by Rachel Joyce, about an ordinary man who does an extraordinary thing: he decides to visit an old friend who is dying of cancer by walking across England. Oddly enough, at one point he meets an oncologist in Bath who explains the difference between a primary cancer and a secondary cancer, and gives the example of a primary breast tumor with a secondary tumor in the liver (which is breast cancer, not liver cancer). And that is exactly what I have. So odd to read about it in this way.

At LAX I was picked up by a driver and car which Nancy had arranged. It was raining and about 12 degrees Centigrade. I was in her appartment at 7.30 PM. Nancy came home an hour later, and pretty soon I fell asleep.

This morning I woke up well rested. Today is a big day for her at the Grammy’s with two all-star medley performances. But first we had some Trader Joe’s cereal and now we’re off to the Coffee Bean.

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New energy


Dear friends, my sincerest apologies for not writing sooner. January has been a busy month for me, one in which I’ve done more than in the previous months!

In short, I’m feeling very good, better than I’ve felt in months, at least since I found out I have metastasized breast cancer.

A quick summary of the medical progress so far:

  • On January 18th, Victor took me to the hospital for a meeting with my specialist, Dr. Baars. She was positive about my blood values. The liver values continue to drop:
  • My bilirubin is down to 10 (was 11 on dec 21st, and 16 on nov 21) – this shows that the liver is functioning nearly normally.
  • The other liver values (Alkaline phosphates, ASAT, ALAT, Y-GT) are still higher than normal but much lower than before – these reflect the liver damage caused by the cancer and by the treatment.
  • Dr. Baars explained that the treatment has caused the formation of connective tissue in the liver.
  • The only thing to cause minor concern are my low white blood cells (leucocytes) which should be between 4.0 and 10.5 (10E9/L) but are at 3.3L. This is the effect of the capecitabine. This is still high enough to continue treatment, but I am to take the pills 12 days instead of 14.
  • My next appointment is on February 6th, and after I return I will get scans on February 26th and an appointment with Dr. Baars on February 28th.
  • This past week I started the second course of medication.  I’ve experienced some side effects, minor nausea, tingling hands at night and insomnia, but nothing to worry about.

In addition, Dr. Baars very kindly wrote a letter on my behalf for my trip to the US with Nancy in February. In the letter (for a medical professional if the need arises), she says the following:

“After the treatment with i.a. Mitmycin-C the condition of the patient has been improved considerably. The liver function nearly normalised. The patient still has a large breast carcinoma, liver metastases and lymph node metastases. Because of the improved liver function she was able to receive systemic treatment. We started mono therapy consisting of Capecitabine given during two weeks twice daily. After one week rest the patient will continue with the next course. The plan is to re-evaluate the patient after three to four courses. If she reacts favorably to the treatment given we can consider loco regional treatment for the large breast carcinoma.”

In other words, if this treatment works, then I might qualify for other treatments, such as radiotherapy or hormone therapy.

During the first three weeks I experienced no side effects at all, which gave me a lot of energy to do new things. Among other things, I assisted my good friends Mark and Jill with a workshop, which was great fun. Nancy and I went to Aken, to the Carolus Thermen. The waters are spring-fed and more than 70 degrees centigrade at the source. In the swimming pools, the water is 35 degrees centigrade (95 fahrenheit). There was an option called the Karawanserei, which we tried out. It looked quite exotic in the picture with sand and warm lights, but turned out to be a room with murals of a desert, the sand was gravel and the lights were super bright. They played some soft music in the background. A very odd experience altogether. The next day we took a quick look at the cathedral where Charlesmagne was buried on January 28th, 814 (almost 1200 years ago) and then stopped by Starbucks to enjoy some coffee and hot chocolate.

My friend G took me to Museum de Pont in Tilburg to see an exhibit by Anish Kapoor – very worthwhile, incredibly impressive! It was a lovely day, sunny and lots of snow, but the museum was tucked away in a residential neighborhood so was somewhat difficult to find.

Nancy celebrated her birthday quietly in London with our mom, and promised(!) me to celebrate it in June. She’s never liked having a birthday in January and with the snow it has not inspired her to give a party. Nancy has arranged a flight for me to LA using her air miles (thanks Nancy!) so I will leave on February 8th, and return on February 25th. I plan to help Nancy on the Grammy’s on the 9th and 10th (mostly by making Starbucks runs for the talent staff in the office!). On the 13th, we’ll start driving along the Pacific coast highway (aka PCH or Highway 1). Our first stop will be  the Coffee Bean in Santa Barbara (yes, Nancy is a big fan!) and on we drive to Cambria where we will spend the night. The next day we hope to catch a tour of Hearst Castle which, believe it or not, I have never visited in the 6 years I lived in California. Next we will drive to Carmel where we plan to visit the Point Lobos State Reserve. Next is Monterey, with Cannery Row, the Aquarium and lots of John Steinbeck novels for me (which I plan to buy in LA because I think 8.99 for an ebook isn’t worth it compared to the real thing).

And the latest news from The Netherlands: our Queen Beatrix is retiring as Queen on Queensday this year (April 30th) in Amsterdam in the Nieuwe Kerk (New Church which was founded in 1409), and her son Willem Alexander will become King, and his wife Maxima Queen of The Netherlands. The New Church is used as a museum, not as a church. Queen Beatrix was (in my humble opinion) a great queen, who has always demonstrated kindness, respect, courage and a great deal of professionalism. I especially like the fact that she is a sculptor. Our country has been a kingdom for 200 years, end of this year, and this coincides with her 75th birthday this year. Queensday is our national holiday which we celebrate on April 30th, which was her mother’s birthday, because like Nancy, her birthday falls in January. Next year it will be celebrated on April 27th.

As we say here “Orange boven!” (which translates somewhat awkwardly into Orange on top – the royal family is called van Oranje, of Orange). Not everyone here will share my opinion, but everyone is welcome to comment on my blog!

On that note, I’ll leave you all to enjoy the rest of the week! I promise to write next week after I hear the results.

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This last week


This past week – the last one of 2012 – was an enervating one for me. We celebrated Christmas with the kids – all four of them. Sebastian traveled to us from Groningen, and looked very smart in his new grey suit. He’s quite the man now, working at the ING call centre and doing a great job! Kudos to Sebas! Henriette is working at the Etos in Utrecht, a very nice drug store, where she sometimes acts as assistant manager. She also babysits. And she is following an orientation course for an art academy each Wednesday evening in Rotterdam. Valentine is now a junior in high school (VWO) and wants to go to the military academy to follow the officer’s training. He works at the Plus in Utrecht. Barbara is now 15 and a sophomore in high school (also VWO), she is looking for a job and also still has singing ambitions!

We exchanged presents on Christmas eve, and had a great time. I was particularly happy with the presents from Barbara (a beautiful clay candle holder she made herself and glazed light green), Sebas (a very nice bottle of the best Italian wine, to share with Victor!), Henriette (Weleda beauty products made from rose buds and iris) and Valentine gave me a Burberry gift set with eau de toilette and bath gel. Victor gave me a beautiful wooden jewelry box. They were all very thoughtful. We had taco’s for dinner.

The next day I went to see Nancy and my mom in Amsterdam. As usual Nancy had lots of presents for me, the heaviest one being the beautiful MacBook Pro which I’m now using to type this blog. I really don’t need it, but I have to say its a wonderful computer. Maybe it’ll help to get me over this writers angst I now seem to have. I hope to be able to surprise her like that for her upcoming birthday.

When I came back, Victor was leisurely preparing Christmas dinner, but not fast enough for the four hungry young adults! So we added a soup and salad course and everyone was happy. After dinner, Henriette visited her friend Amanda who was babysitting her niece, nearby. The next day was spent watching films and playing Mah-jong and I took Amanda and Henriette back to Utrecht. Victor dropped Sebastian off at the train station and we were back to four. Thursday night Annet treated us to a lovely five course dinner at De Goede Gooier, a nearby restaurant with a quiet ambiance. They had prepared wonderful vegetarian dishes for me, using wild mushrooms, eggplant and spinach.Valentine had to go back to work on Friday so he left with Annet and Henriette.

Friday was the big day for me. We went to the hospital for my meeting with the dentist and my oncologist. The dentist was very nice, and told me anytime I had any side effects I could come to see her. Dr. Baars, my oncologist, was pleased that I looked better. My hair is growing, albeit slowly and its very short, and my eyelashes and eyebrows have grown back. Also, I’ve gained weight and my muscles are back as well. All in all, I look much like I did before I got sick.

The results from the MRI showed that the breast tumor has shrunk from 2,7 cm to 2,4 and the shape has changed: it is now caved in around the perimeter, much as if it is imploding, whereas it was round before. There is not much to see now in the armpit lymph nodes. The CT scans of the liver were not very clear. This is partly because the mitomycine caused scar tissue to grow which is hard to distinguish from the cancer tissue. Also the cancer tissue has become somewhat vague on the scans. Dr. Baars primarily looks at the blood values which were improved even compared to last time. The two tumor markers are almost normal. I’m not really sure what that means, but it sounds good.

She explained about the new pill cure which I am to follow starting on Monday. I will take capecitabine, a chemo which comes in 500 mg tablets, 3 after breakfast and 3 at night, after dinner. Two weeks on and one week off. Victor picked them up this morning and I had my first dose. I am allowed to travel with the pills, so I’m planning to go to LA to visit Nancy and then up to San Francisco in February to visit my friends there. Annet is taking Henriette to LA at the same time, so hopefully the timing will work out so we can meet up there.

Yesterday we had tea with Marijke, Peter, Marlies, Dani, Carlijn (back from Canada) and our neighbors Nicoline, Kees and Rob. Peter and Marlies had a kidney operation a week and a half ago; Peter is Marlies’ father and donated one of his kidneys so that she can live a semi-normal life again (she’ll be on medication the rest of her life). Her kidneys worked at 18%, and she would have had to go through dialysis if this operation had not taken place or had failed. They are both recovering now, and can walk already! We’re so relieved it went well!

Today we’re taking things easy. Went for a walk in the woods with Ellen, Nancy, Puk and Flo and had some juice at Nijhof/La Place. Now I’m home with Victor, listening /watching Keith Jarrett (Standards) on dvd with a fire burning.

My new years resolution: to take things easy, to enjoy every day and to keep in touch! And of course to try to get better! Much love to all of you. I wish all of you a very happy and joyous new year!

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Scans and echo


Today we went to the AVL cancer hospital for the scans. We left a little late because we had to make a stop at the chamber of commerce first. I had three companies and decided to stop two, since I’m not working now. This past week we’ve been busy with the administration, which has mostly been done for us by Sheira from Administration4You. She’s done a terrific job and kept the hassle to the bare minimum.

I had the CT scan first, which was quick. I dressed for the occasion (no metals, just soft and stretchy clothes) which makes it all easier, no need to get undressed. First they tried to insert the IV (for the contrast fluid) in my right arm, but no blood appeared despite the nurse’s attempts to wheedle it out of me. The left arm worked better. (Same was the case later for the blood tests, so I had my share of needles being moved around inside my veins, not so nice!)

The CT scan was done in less than 10 minutes, and the MRI was scheduled an hour later. I spent the time reading the Grazia, nice change from my more serious reading at home. The MRI went well but took much longer. Because of the noise I was given earplugs and headphones, connected to the radio. After the scan, they removed the IV.

Next I had an echo. The radiologist was very nice, she explained what she saw and talked about her profession. She said the tumor was a bit frayed at the edges, with a maximum diameter of 2,4 cm (down from approximately 7). She didn’t see much in the armpit, so hopefully that has shrunk as well.
Good news to start the weekend, and now its time to start enjoying the Christmas holidays.

Merry Christmas everyone!

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Update on the bucket list


It’s time to check up on the bucket list, which I posted back in July.

At the time, this was the list:

1. cycling in the sun – done! Did a 30 km ride on a beautiful day in August (went to see Ingrid in the meadow with the horses, cycling through the forest most of the way).
2. sailing on the lake (loosdrecht) nearby in the sun – Thanks to Erwin I can check this one off too. He took me sailing on his catamaran end of August. It was a very enlightening experience!
3. having a drink outside in the sun) – check! did that a few times!
4. weekend Madeira (flower island) – I’m crossing this one off the list and replacing it with something else. It’s a long flight and more expensive than I thought.
5. long weekend Barcelona/Girona – keeping this on the list
6. citytrip Hamburg – instead of Hamburg, I’m going to Antwerp with my friend Francine this coming Saturday. She has offered to drive so we’ll do a quick day trip and have lunch there and maybe do some shopping.
7. Marienwaerdt 15 augustus (castle fair in Holland) – We didn’t go in August but my mom took me in December. It wasn’t crowded and very enjoyable.
8. citytrip Lissabon – crossing this one off the list. Barcelona will be enough.
9. San Francisco (next year) – keeping this on the list
10. Peak district UK – still interested in visiting but no concrete plans
11. Danor review (book I wrote long ago that I’d like to publish, so if you have any tips, let me know) – I’m working on a rewrite now. When this is done, I plan to send it to the Writers Workshop in London for an editor’s review.
12. vegetarian cooking -thanks for the recipes you have sent me! I am starting to cook more (Victor has been cooking all this time!) so I will try these out.
What I hadn’t put on the list but should have was:
– visiting my dad in Malaysia
– visiting a sunny place in the winter?
– sculpting
– meeting friends
For me it’s not so much about visiting places as it is about visiting people I care about. I have several friends in the US I’d love to see, but it’s too much to go to everyone, so San Francisco seems like the best place to go to, maybe with a stopover somewhere else.
My updated bucket list:
– long weekend Barcelona
– San Francisco
– rewrite of Danor
– sculpting
– trip to my dad in Malaysia?
– help Victor set up his tax advisory practice
– start working out again?
– back to work?
Thanks again for your cards, visits and messages, I truly believe it has given me a lot of strength these past months. I’m looking forward to a more relaxed period these next few months, so I probably will be posting less. You can always mail me, whatsapp me or call me! Take care!
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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!

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