Category: Friends and family

Posts about friends and family

Posted on

News from my nurse


This past week I was feeling very tired and slept a lot. I was also very shocked about the news that a very dear friend suddenly has cancer – she recently married her longtime partner and is also pregnant. She underwent major surgery to remove a tumor in the colon; the operation succeeded but we all are still very shocked by the sudden news of cancer and are praying for her health.

My nurse Janny called Victor to tell us the CT scan is scheduled on the 11th of september (I still shudder at the date). The appointment with my oncologist will be rescheduled from the 3rd of september to the 13th, because the results till now are very positive, with the bilirubin lower than they expected. They were pleased that the results are good, better than they had expected.

The chemo on Wednesday can continue, again first of three.

And tomorrow my dad will arrive from Malaysia! I’m very happy to see him. Thanks everyone for being so supportive!

Posted on

Thanks!


This is just a quick note to tell all of you thanks for reading my blog and writing comments. Your comments really help me a great deal! If your comment isn’t visible directly, it is because I have to approve it first, and some days I don’t get around to doing that till late or the next day. The blog is public, but cannot be found by search engines (I turned this off). I might turn it on later, because some people try to look for the blog using google and then can’t find it.

I can’t see who is following the blog, so your email addresses are completely safe, I can’t even find them. (Only if you leave a comment).

I had a nice cup of tea with my neighbor and was treated to lunch by Ingrid, so the day started good. Then I heard that a young friend of mine might have a tumor – I really hope its something else. I will pray to my guardian angels that she will recover soon.

A special word of love to my husband Victor for his support and love. And lots of huge hugs and kisses for my sister and mom who walk my dog when I’m too tired and bring me freshly squeezed raw veggie juices every day! I think this super food is helping my liver to get healthy.

Take care all!

Lots of love

Sheila

Posted on

Update


Dear friends and family,

Thanks again for visiting me, thinking of me, praying for me, and sending me mail, comments and note cards.

My dad is coming to visit next week for my birthday, thanks to my sister Nancy who has arranged it all. He has not been to the Netherlands since our wedding, 7 years ago. It will be good to see him, although I will greatly miss Deloris who cannot come.

The chemo today was cancelled due to my low white blood cell count. Next week, we’ll continue with the double dose (AC together). The nurse had good news too: the billirubine has declined to 24, from 39 the last time (the first 3 week period). So the chemo is working!

Last Thursday I went to Amsterdam to see Nancy and Natascha and Neeraj met us there. Later Elly, Noreen and her husband Andrew came by as well. They’re so kind and caring! After they left, Nancy and I had a thai meal at the Thai company. Nice to be together!

On Friday Sanneke came, and it was really good to see her. She had brought me the most beautiful flowers, all colors of the rainbow. Unfortunately I had to go to the hospital because of my skin rash so we had a short visit/ My mom drove me to the hospital twice, once to pick up a form and make the appointment and next to see the dermatologist . It turned out to be eczeem (eczema).

This weekend was very very hot. Went for a run with Claudia on Saturday and wrote a bit on Sunday.

On Monday I was invited to go sailing with Erwin, Ingrid’s partner. He has a catamaran in Muiderzand. It was a beautiful afternoon and I really enjoyed it, especially our talk about Buddha.

On Tuesday my aunt and uncle came all the way from Wemeldinge Zeeland to Eemnes to see me. They’re very special people, and I really enjoyed seeing them again.

Posted on

Zutphen en Durbuy


Busy week this week. For starters, last Thursday Victor and I visited Zutphen. It was a lovely afternoon and we really enjoyed walking through the old village. It is one of the few cities in The Netherlands that seems like it hasn’t changed in the last 400 years. The only modern building we saw was City Hall, which looked oddly out of place. Sections of the old city wall are still standing. If you like old town, go visit Zutphen and Deventer is not too far away.

  

Friday we left for the Ardennen –  I had a bad sore throat and worried I might get sick. Fortunately the combination of fresh squeezed spinach/apple/cucumber juice, beet juice, a few paracetamol and Ricola from Annet I’m all healthy again! We arrived at our hotel near Durbuy a few minutes to three, and on the clock, Teresa and Michael arrived (we call them M&T now for short). It was so great to see them! I had seen them in San Diego last year, but for Victor it had been much longer ago, back in 2003 when Michael gave us the historic  tour of San Diego. They bought a French fiber glass canal boat last year, on which they travel all through France!

We walked around Durbuy which seems to exist purely for the tourists since we’ve never ever seen so many restaurants in one square km (probably even smaller – it is the self-proclaimed smallest city in the world!

We ate in the restaurant of the hotel. They serve good food in huge quantities. Unfortunately for me not much choice on the vegetarian side, so I settled on the pasta provencal (tomatoes and bell peppers). It could have fed a family of 6.

The hotel was very nice, the staff friendly, but there was only one problem for me: I couldn’t sleep in the bed because of pain in my back. I ended up sleeping in the bedbunk and that was fine. But I think I will adapt my bucket list and make shorter trips so I can sleep in my own bed.

The next day we visited the caves of Remouchamps. They were really impressive. We walked quite a long way, saw beautiful stalactites and stalagmites, a large caverns (had to climb quite a bit) and finally took a boat on the underground river. Really beautiful!

In the afternoon I was tired and took a nap while Valentine went kayaking. In the evening we went to the Indian castle Radhadesh, a spiritual center for the Hare Krishna’s in a typically French 18th century castle. Mostly white women and men wearing sari’s and indian dress. We were too late for the tour which Barbara had really looked forward to but not for the food! We had a delicious vegetarian Indian meal (Valentine had pizza) so I was really happy. It was a very spiritual place. When Victor paid with his debit card, the line was busy (they shared it with the store) and the German lady ‘cursed’ “Krishna”. Victor bought me a yoga book for 1 euro from which I learned that yoga is all about becoming one with Krishna which one achieves by saying his name continually. I’ll have to remember that!

The next day we visited the topiary park, which had hundreds of different figures cut by hand from boxwood (buxus). I love gardens but this one left me somewhat indifferent. I enjoyed my conversation with Michael though, he knows so much about so many different things and can really get very enthusiastic. Very inspiring! Victor discovered they have a Belladonna plant there with berries, which are poisonous in small quantities and can kill a child. We walked through the town and then it started to rain. We said our goodbyes to M&T in the rain and headed back to Holland. A nice weekend!

Posted on

Treatment #3 August 1st 2012


Yes, summertime is still here. Here’s me outside the hospital with my mom.

At the hospital, there’s a nice waiting area with magazines and a volunteer brings coffee or tea. Just past 11 three of us were taken to a room with green chairs, and again the lovely view outside. A young woman was already there with a friend, she looked younger than me.

The nurse accidentally cut her foot while moving a chair and yelled out and jumped up. She was bleeding but fortunately enough she had plenty of bandages. Her vacation starts tomorrow and although she was very nice and alert, she would occassionally say she was very much looking forward to the pool at her vacation spot. Sure sounds good to me!

It all took much longer today since she had to take care of all three of us at the same time. The good news was that she got the cap on in no time – we stuffed two washcloths in the sides, I held on to the green snakey hat (made up of green coils through which the freezing liquid streams) while she pulled the yellow helmet over the top. She strapped it on, put my ski band across and that was that. Took no more than 4 minutes.

So then I have to wait 45 minutes till the scalp is cold enough. It took a while before I got the first IV (with salt solution). Ofcourse when the chemo should have been added they were all out to lunch. A young nurse came in, attached it, and waited for ten minutes. She explained when another lady asked that because the chemo I have is rather aggressive, they have to wait in case something happens.

Like last time, this only took about 25 minutes. The cap then has to warm up because if you take it off, my hair would be frozen en stuck to the side and that would pull it out anyway. At that moment, Trees came in. She and her husband are friends of our friends and neighbors Marijke and Peter. Trees was in good spirits. They’re going away on a short holiday and she had two-three hours of chemo today.

The other ladies in the room explained they all had side effects, one lady really had a bad time. I feel so lucky that I’m not yet feeling bad. On the contrary, apart from insomnia (for which I get pills to help me fall asleep) and eyes that burn occasionally I feel nothing at all, no nausea, no pain, no vomiting.

Here are some pictures of us in the park (Groeneveld) afterwards:

   

Because I don’t want to spam too much, I haven’t blogged as much as maybe I should have.

Here’s a picture of my cousin Ineke and her son Luc, me, Naut (standing) and Valentijn (on the right) last monday (July 23rd), taken by Nancy:

Yesterday I met Ingrid and Carien at the teahouse ‘t Hoge Erf in Lage Vuursche and we had apple pie and coffee, tea and hot chocolate (me!). With whipped cream. Carien came in with her finger bandaged. And she had just returned from vacation in Spain with 8! teenagers. So we asked what had happened. Well, she said reluctantly, her finger was caught in the door and the top cut off. So she pulled it out of the door and put it back on her finger. Fortunately, one of the kids had a drivers license and took her to the hospital. What a horrible story! I can’t deal with things like that, this really freaked me out. To top it off, the surgeon at the hospital wouldn’t tell her if he had sewed it back on and she couldn’t see because it was bandaged again.

It turns out he did save it. What a vacation!

 

We’re going to the Ardennen on Friday with Barbara and Valentijn and staying till Sunday. We’re staying at La Passarelle near Durbuy and our good friends Michael and Teresa from San Diego (Teresa and I worked together at HP from 1995-1998) are driving up from France. I’m really looking forward to it. Ciao!

Photo credit: Nancy Ghosh!!! Thanks Nanc!

 

 

Posted on

Haircut and update


Yesterday my sister arranged an appointment for me at my hairdressers, Haute Coiffure Gebert. Very good hairdresser, at least something to look forward to. I had decided to cut my hair short, since it is easier with the cold cap and easier to style. The hospital flyer said to use only baby shampoo, but my hairdresser, who has experience with patients who lose their hair, nodded his head. “You know what baby shampoo is supposed to do, don’t you. To prevent it from hurting your baby’s eyes. It’s got a high pH and isn’t good for sensitive skin.” So that means I can use my own shampoo (volume!) – yes it does. Happy me. Two bottles of Zwitsal are available for young parents who need it! Send me a whatsapp if you want it (you have to collect it here in Eemnes)!

Nancy had paid for this treat as well, so when I walked home, I was carefree and my hair looked nice. Of course, how to keep it looking that way is the next challenge.

Victor shared an e-mail with me from our friend Marc Dufour, who lives in Canada and has metastates from colon cancer. He has done a lot of research (he is a gynocologist) and has found an alternative therapy which might be worthwhile for me if all else fails. See his message on the page Experiences.

This morning the oncology nurse called me. In the meeting my oncologist had yesterday with the specialists from Anthonie van Leeuwenhoek hospital (specialized in breast cancer) they discussed the chemo dosage and decided to lower the Adriamycine to 20mg per time, and deliver it weekly. She asked me to come in at 10.15 because it was still being prepared. Also, this means I have to come back next week and the week after. They were worried the liver would stop functioning altogether and that’s why the dosage has been lowered.

Posted on

The liver


Wow, who would have guessed I have a diseased liver? One that has scar tissue and looks bad. So I’m back to the hospital to get a liver biopt.

I used to think that I was a blessing for the medical system since I was never sick. Well, I must have used up most of my contribution just with the visits of the past week. Am I glad we have such a reasonably health care system here. Everyone who pays their contribution (which is nearly everyone but there are always some people who cannot or will not participate) – which starts at 1000 a year but can be significantly more if you have a chronic illness – gets medical treatment. Lucky me. Anywhere else I would have a big problem.

Yesterday at noon our GP (general practitioner, huisarts) came by the house. She’s very involved and always available if you need her. Who’s GP drops by your home? She explained to us that the reason the biopsy results take time is that they need to develop a cell culture from the tissue. Also, there could be another explanation for the liver damage. We will have to wait till next week before any results are available. Once they are, she will get them as my GP and I can get them as well. This will be nice since I would very much like to see the facts. I still do not know the kind of tumor we’re dealing with. She also said she has many patients who are beyond a cure but can live rewarding lives for many years, thanks to much improved chemo therapy which can really slow down the cancer.

At one pm  I reported to department D0 – outpatient care (dagbehandeling). The nurses said I was way too early (2 hours early) but I could sit in a room with magazines and I passed the time reading magazines I normally wouldn’t read, such as Jan (didn’t care for it much), Glamour (fashion seems very useless when you have cancer), and Gezondheidnu which was ok.

Just before 3 the nurse took my bloodpressure. At 3 pm the nurses came to take my bed on wheels to the radiology department. I walked behind it, which was funny. Once there, I had to wait a few minutes in the hallway. The male nurse who had helped me with the bonescan walked by, recognised me and wished me luck.

Once inside I had to take off my shirt and boots and lie down on the bed. The radiologist first did an echo, and then prepped the skin. He said the local anesthetic (verdoving) would hurt and it did. The nurse (Yvonne) sat by me and held my hand in case it hurt too much. But I managed ok. Then the histological biopsy was taken with a thick needle, same as the one used for the breast. He took two biopsies and then used a thin needle (I felt the needle in my liver, bit painful and strange) to extract additional cells. From my last biopsy I recalled that this allows them to look at cells directly under a microscope, thus giving a faster diagnosis. So I was glad for that. When he was finished they all said I was brave. But to me that’s normal, doesn’t seem very brave at all.

They are all very nice and very professional. The nurse went to get my shirt and handbag and helped me to put it on. It felt a bit bruised and a bit painful. Once my stuff was loaded onto the bed I was carted out of the room and placed in the hall. The nurse who had taken my bloodpressure came to get me and took me to a patient wing, to a room with 3 other patients. These patients all had visitors who were really loud, a cacophony of sounds. It annoyed me so much I asked for another room. It worked, I was taken to my own little room. I had hoped to get out of there by 5, but they said they’d keep me till 6. Every 15 minutes the blood pressure pump was activated which meant I couldn’t sleep. At 6 nurse Erik told me I had to stay another 2 hours and I couldn’t believe it. But that’s the protocol in case the liver starts bleeding. Fortunately, my mom and sister came at 6.30 pm at visitor hours. They brought me nice silk scarfs in teal and blue and soft orange for when I lose my hair and had all sorts of stories to make the time pass. At 7 I was carted back to the room I was before. This time the poor lady next to me was sick and throwing up. Boy, was I glad I could leave at 8. Some people aren’t so lucky.

Monday is my appointment with the oncologist who is supposed to be very good. Today and tomorrow I will try to do some work to get my mind off things.

Posted on

The results


After waiting an hour in the waiting room, we were called into the surgeon’s office. He began with the MRI. The MRI showed that the tumor area was about 7 cm large, which confirmed his initial diagnosis and meant that the full breast and skin would have to be removed.

He continued by telling us that the bone scan was fine, and also the lungs were free of metastases. This was not the case for the liver. The radiologist had seen some abnormal tissue on the echo and had requested the CT Scan. The CT scan showed that the liver was highly damaged. The doctor asked me if I had any liver diseases in the past, such as Hepatisis B or C. Apparently my liver looked like one with cirrhosis. This could also be damaged due the cancer cells, but in that case the liver would be infected all over. The only way to be sure is to take a liver biopt. Since there was a multidisciplinary meeting in the afternoon where my case would be discussed, my doctor asked me to return at 15.10.

This is of course bad news. If the breast cancer has infected the whole liver, there’s not much that can be done about it. Chemo therapy is then the only option.

We went back at 15.10 pm to discuss the outcome of the meeting. The doctor informed us that the team agreed a liver biopt should be taken, and he had scheduled it for tomorrow. Before the biopt is taken, a bloodtest must be done to check the blood’s ability to clot, and to check for Hepatisis B or C. Next week, I am scheduled to meet with the oncologist to discuss the results, if they are done in time, and possible treatments.

Since I’ve been doing some research on the internet, I’ve learned that metastases in the liver are a bad thing. Basically, getting better is unlikely and treatments are aimed at prolonging your quality of life. Still, nothing to do but wait for the next set of results. So tomorrow, I’ll go in for a liver biopt.

It still seems unreal to me that I would have such a bad liver, considering I’m hardly ever sick, and have been eating healthy my whole life. I will now try to come to terms with the diagnosis and try to make the best of things! I’m so glad Victor is such a wonderful supporting husband and best friend. Thanks again to everyone for your support, it means a lot to me.

Posted on

New pictures


Valentine gave me beautiful flowers on Friday.

me in the garden

Tanaquil came by on Saturday, while the sun was out. Her flowers were for Victor, which was so sweet.

Posted on

Zonta


Last year I joined Zonta, a service club for women to which my friend G introduced me. Zonta is a group of professional women, from different professions, focused on improving the lives and position of women in the world. I really enjoyed my first year with Zonta. On Tuesday evening, we had a lovely picnic in the park by het Gooimeer (near the golfcourse). I had mailed everyone to inform them about my situation and had received such sweet emails. We had a lovely picnic, and Victor had prepared a wonderful quiche with spinach and artichoke hearts. Nice to have such a close group of ladies to talk to.

All in all a fine evening!

Blog at WordPress.com.