Friends and family – Page 2 – Sheila Ghosh

February 23, 2013

Return to Los Angeles

We arrived in LA on Tuesday which was a gloomy day. We picked up some groceries at Trader Joe’s where Nancy ran into an old acquaintance and as we pulled our suitcases into Nancy’s studio apartment it started to rain.

My next goal in life is to write a book, so we’re watching a lot of films. Last week we saw The Hungergames which I thought was a really interesting story about a future in which oppressed people have to sacrifice boys and girls for a gladiator-like reality tv show in which only one survivor can win and live. Of course, the two main characters both live and there is a sequel in the make.

On Wednesday we planned to meet Nancy’s friends Antar and Chris at the Coffee Bean. Only they were waiting at the Coffee Bean at Hollywood for us while we were chilling in the sun on Sunset. When they came to meet us (yes, Nancy can be very persuasive!) we had a great time. We then went to the Urth Cafe for a very tasty organic lunch. Nancy needed to pick up her credentials for the Oscars and she arranged a day pass for me, so I met her colleagues Caprise and Kelly. They all work on the pre-show which is a big deal because they cover the red carpet arrivals and major interviews take place. The show airs live on Sunday at 5 pm PST so the timing is crucial. It was fun to see the red carpet – which is really wide – maybe 40 or 50 meters or so – and the length of a full city block with a huge tent in the middle and bleachers on the sides. They were still putting everything together for the show. Of course, Nancy knows everyone so we had to stop every 20 meters to greet someone she knows. I’m particularly impressed by her LAPD connections, always handy!

Afterwards we went to the Grove to get some things Nancy needed for her work. At night we headed out to Marina Del Rey to meet Annet and Henriette at the Cheesecake Factory for the best food and views in town.

We had a great time and Nancy and Henriette actually ordered cheesecake which I’ve never done before. That’s not to say that they ate much, just nibbles and they took it back in boxes. Nancy had the Dark Chocolate Raspberry Truffle Cheesecake and Henriette ordered the Oreo Cheesecake (it has a different name though) which was very good of her because the proceeds go to a children’s charity.

On Thursday I dropped Nancy off at her hairdresser’s and drove to Newport Beach where I met Michael, Teresa and their poodle Sophie. Sophie is 18 months old and they got her from the rescue. They’ve trained her and she is very well behaved!

On the way back I met Nancy at the Grove and then we headed back to her place.

On Friday we met Annet and Henriette at the Coffee Bean at Universal, and thanks to Nancy’s friend Mark we were admitted as his guests to the park. This was a huge favor and made our day!

It was a gorgeous sunny day. We had a great time!

Last night we met our cousins Payal and Rakhi and our auntie Nevedita in the Pink Pepper, a Thai restaurant near Nancy’s house. It was wonderful to meet them, I had not met my cousins before and they are beautiful and very sweet!

I was so happy to meet them after all these years! They made such an effort to meet with us, and we had a great time. As you can tell, this was maybe the most important item on my bucket list! Fortunately, I’m still feeling very good. As I’m finishing this blog entry it is Saturday morning in LA, and the skies are blue. Nancy left for work at 7 this morning and she works until 7 or 8 tonight and tomorrow. And on Monday we’ll head back home.

February 18, 2013

My friends in San Francisco

As many of you know, the reason for this trip was to visit my dear friends Erin, Laurie and Laura in San Francisco. My journey with cancer has really opened my eyes to the fact that my family and friends (all of you!) mean more to me than anything in the world. So reconnecting with my friends was the driving force behind this trip. Thanks to Nancy who made this all possible: she took care of my ticket, has driven me everywhere and has been a great trooper putting up with my whims and whiles.

So Nancy drove us along highway 1 because I’m afraid of heights! We spent the night in Monterey at the Intercontinental and had a nice ocean view. I felt a bit queasy so we had a soup and cheese plate at the hotel. The next morning was beautiful, gorgeous ocean views and a Starbucks around the corner.

As we left we stopped at the Cafe la Strada to pick up a lunch to go. It is part of a very nice hotel which looked very exclusive (and expensive).
We are sitting there now on our way back to LA.

From Monterey we drove along highway 1 past Santa Cruz and up to San Francisco, with beautiful vistas along the way. Our first stop in SF was Erin’s place in Greenbrae which is above the Golden Gate bridge on a hill.

We met her and her wonderful son Alec at the Bon Air shopping center and then followed them up the hill in the dark. Brad was in Boston visiting his dad who is very ill. We ate a great salad Nicoise and had a chance to catch up.

I think it’s been more than 10 years since we last saw each other (before Alec was born, and he is now 9). Erin is a documentary film producer. We’ve been great friends since going to UPenn together (University of Pennsylvania, in Philadelphia). We also worked together on documentaries for schools at the time. Erin has been working for the Teaching Channel, making documentaries in schools and producing resources for teachers across the country. She is so passionate about her work, it is really inspiring!

They have a wonderful dog named Monty, part border collie and australian shepard (Erin correct me if I’m wrong!). He is 15 years old, has a soft beautiful coat and is very sweet.

We had a leisurely morning, had coffee at Peet’s, and walked around the neighborhood by the water with Monty. Later on Nancy and I went into the city looking for a Paul Frank store (Nancy loves Lucius the monkey!). Unfortunately it was shut down. Now the only store we know of that is still open is in Kuala Lumpur. Perhaps when we visit my dad there we can go there…. Since that store was closed we went into Banana Republic, Nancy bought a nice winter jacket and a shirt and skirt for me. Thanks to the lady helping us I think we got a huge discount: 25% off the clothes, another 20 for taking the card and 10 for buying a tote bag. Not bad!

At night we met Erin at her friend Mark’s boat in Sausalito harbor. We also met Gary and Armand (not sure about the spelling). It was fun to have a pineapple juice on a beautiful boat in the bay! Heard some great stories.

Alec wasn’t feeling so well though, so we ate at Erin’s house. Alec got worse and wasn’t feeling so good. He’s such a great and smart kid, we were very impressed by his navigational skills!

On Sunday morning Nancy and I drove across the Richmond bridge to meet my friend Laura. Laura and I met at UT Austin where she did her master’s and I did a year in the PhD program. We had some trouble finding her house but once we did we had a great time talking with Laura, Jeff and their beautiful daughter Lucia.

Laura worked as a communications director for a non-profit but is now considering a career change and working on radio interviews. Jeff is an audio engineer at Dolby and told us about the next generation of theater sound! Lucia seemed happy to serve everyone (she is nearly three and so beautiful!).
Our visit was short but great fun! We talked about doing a series on people who are 80+ and active – an idea Erin and I came up with.

We went back to Greenbrae to pick up our bags, say goodbye to Erin and Alec (who was still sick) and left with lots of lemons from their lemon tree.

One of them fell out of my arms into the street and rolled down the hill (a lost lemon!).

Next we drove into the city to meet Laurie in the park. I wanted to see the Japanse Tea Garden again, one of my favorite spots in the city. As we drove along Presidio it became apparent that left turns are not allowed! In fact, it’s almost impossible to make a left turn anywhere in SF!

Laurie was already waiting for us! She’s been to Holland a few times to see us, had been at our wedding in 2005 and again a few years later. She’s such a trooper! She moved to San Ramon because of work, but the work isn’t that great and she misses San Diego. Me too!
Laurie and I worked together at HP back in 96-98. She’s specialized in training and management at high tech companies so if anyone knows of a great company in San Diego let us know!

We walked circles in the Japanese tea garden, thinking it was much bigger than it actually was.

Then we decided to go have drinks at a mexican place: guava juice for me, ice tea for Nancy and (free!) sparkling water for Laurie. We ordered nachos but they were tossed in a super spicy chili sauce that was way too hot for all of us. So out with the nachos and in with their home made chips, which were a bit too hard for my taste. We decided to eat sushi and looked in the guide book for a good sushi place. There was one on Geary – “no frills and fresh fish” – that sounded good so we headed there. We had to wait for 40 minutes outside to get a seat, but boy was it worth the wait! The best sushi ever! We had salmon avocado rolls, tempura shrimp roll and the spicy tuna tartar with mango. It was divine.

At about 9 we dropped Laurie off at the BART station on Market so she could take the train home and we went on our way to Monterey. Which is were we are now.

Today is the first cloudy day since I’ve been here (this is my 9th day here). So we’re taking it easy. We may visit Carmel and then head back to the 101 to Santa Barbara/or drive on to LA. We’ll see and I’ll let you know. Today is President’s day, so Happy Presidents Day everyone!
Ciao!

February 9, 2013

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.

January 28, 2013January 31, 2014

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.

December 31, 2012December 31, 2012

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!

December 13, 2012December 13, 2012

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!

December 12, 2012December 13, 2012

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:

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

November 10, 2012

Feeling better

On Sunday, we visited Alice, Jasper, Amelie and Arthur in the AMC Emma Children’s hospital. Arthur was born at 33 weeks, but despite his small size, he’s doing well. He can drink from a bottle, and apart from an infection the day after he was born, he’s healthy. Alice had her first chemo on monday. She looked well, but the illness is awful.

This week I really felt much better. I can eat almost anything now, no more pain in my mouth, the mucositis is over. I’ve had visitors this week, and on Thursday, Victor and I took the train to Amsterdam. He went to the University of Amsterdam and I met my mom in the Bijenkorf for a tea.

Some days I’m still a bit tired (like today), but I’m walking each day now, and yesterday I cooked for the first time in a month! Victor has taken really good care of me, cooking every day and doing the groceries. Here’s a picture he took of the fall in Laren.

Next Wednesday I have my second treatment in the AVL. I feel like I need it, so I’m glad to be able to go. I’m lucky I am able to get this treatment. More next week!

September 20, 2012September 20, 2012

Chemo #4

So turns out the numbering I used is a bit different from the hospital. I’ve had 3 chemo’s, spread out over 9 weeks, which they number 1a, 1b, 1c, 2a, 2b, 2c and 3a, 3b, 3c.

So yesterday I had number 4, all at once. The Adriamycine (Doxorubicine) which I first got in packets of 20 ml was now increased to 94 ml. Which funnily enough took the same time, about 15 minutes. I felt a slight tingling in my nose and watery eyes but otherwise I felt fine. The Cyclofosfamide (Endoxan) was the same as before so hadn’t changed. This saves me from having to get my veins pierced every week, which makes them harder for the nurses to put the IV in and to take blood. I don’t have to get my blood checked until october 8th, so that’s a relief and a big time saver!

So far so good. My mom and Nancy had taken me to the hospital yesterday, and despite being the last one to get the IV, I was the first to leave. This time, I had only male companions, one of them I saw three weeks earlier with his wife, who is very kind. No one wanted to sit on the bed, so I volunteered. It doesn’t matter much to me, I get to take my boots off and you can move the back up so it’s quite comfortable. I have a feeling the reason men don’t like the bed is because they’re afraid to take their shoes off (although you’re allowed to keep them on). My mom bought me Marion Zimmer Bradley‘s novel The Mists of Avalon, which I read more than 20 years ago. And although I’ve watched the movie many times, it is still a delight to read.

Although they serve lunch, I had brought my own sandwiches with vegetarian filet americain (yes its good, and contains lots of protein) and a banana. Still, afterwards we ate lunch and shared a big mozzarella sandwich and I finished a large smoothie. All in all I’m doing my best to keep eating healthy and calorie-rich.

I’ve decided to start creating clay scultpures again. Apart from this past year, I had been attending sculpture classes in Laren (next town, 3 km from our house). They were fun to attend, but the time was rather late: from 7.30 to 11 pm every wednesday. I asked my teacher if I could bring the sculptures in to get them fired and that was no problem. So my mom and Nancy drove me to the store (de Hazelaar in Soest) and I selected a 10 kg block of clay (grove chamotte) and some tools. So hopefully I’ll find the inspiration to make something beautiful!

Nancy likes this group of elephants I made two years ago, its fired in clay but we’re considering making a mall and having it cast in bronze :

So although I feel okay today, I expect that I’ll feel worse tomorrow and Saturday but we’ll have to wait and see! Thanks again for all your thoughts and best wishes. Take care!

August 31, 2012January 31, 2014

This week

Last week I had no chemo because my white bloodcell count was too low. For the first time, I had to slow down, and rest more.

On Tuesday, my dad arrived from Malaysia. My sister was already at Schiphol when we arrived, just in time to meet him.

I was surprised with 5 beautiful bouquets! There is someone who sent me flowers without a name; the card mentioned ‘carpe diem’. If someone recognizes this, please tell me so I can thank you!

Tuesday evening we celebrated my birthday with an Indian meal and I was showered with beautiful presents from my mom, sister, dad and Victor.

The chemo on Wednesday went fine. My friend G picked me up from the hospital and took me to the Golden Tulip where we had lunch with my mom and sister.

On thursday we went out on the lake in an electric boat.

My dad is now staying with Nancy in Amsterdam, he’s leaving Wednesday.

Thursday evening I had a fever and we called the hospital. They told us to come by the emergency room. Apart from the high temperature (38.9) I felt alright and the tests showed there were no infections or other issues to worry about. The doctor also checked me and said I could go home.

Today again a fever, close to 40 degrees. I don’t feel sick, not feverish. It must be the chemo working. So I think I will need to take a lot of rest the next few days and try to give my body some time to get better.

	Sheila Ghosh on Make the most of life
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