Author: Sheila Ghosh

Enterprise and IT architect, patient advocate for metastatic breastcancer and creative writer
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CT scan and chemo #9


On Tuesday I had the CT scan. I had to drink a liter of water mixed with Joxitalaminezuur (a contrast liquid for the colon). And I couldn’t go to the bathroom an hour before the scan, which was scheduled at 10 AM in Blaricum. Well, we arrrived just past 9.30 and informed the receptionist I was present and had a scan at 10 AM. By 10.15 no one had called me yet, and I felt a need to go to the bathroom (which was not allowed until after the scan). We informed at the reception why it took so long, explaining I really needed to use the toilet. The nurse called the CT room to ask what was taking so long. Nothing. Turned out they had scheduled me at 8.30, but I was told 10 am. Instead of telling me when I checked in, not a word. Not even a call at 8.30. Fortunately, they could help me right away. I could keep on my t-shirt and pantyhose (no metal), they shoved an IV needle into my right arm, but it didn’t go in, so then switched to my left arm and that went fine. I was lying with my face to the ceiling. Fortunately, the CT is a roomy machine, that looks like a large hole in a solid machine. The table moves back and forth. During the scan, the IV which contains the contrast liquid is opened and I could feel the liquid move through my mouth. Also, it gives you a warm feeling, and the feeling you have to pee. The good news was that the scan was very fast, about 10-15 minutes. I got dressed quickly, ran to the bathroom and that was that.

The chemo on Wednesday went smoothly too. The nurses in this departmentment are specialized in placing the IV needles, so it doesn’t hurt as much as when other nurses do it. The architect was in my room, as was a lady who was getting her last chemo that day. She was in the mood for a party, but there were no balloons or champagne. The last gentleman coming in was very funny. This time my mom and sister both joined me. Everyone was in a good mood. The dietician came by and asked how my eating was going. Well, I gained about half a pound, ate all the things I used to avoid, like fatty, high caloric foods, but that’s what she had suggested. The ice cream I skipped, don’t eat that all that much. After I was done, we went to the tea house to eat lunch. In the afternoon, I made a point of eating more junk food and hopefully that helps me to gain some weight!

After my mom and Nancy left, I was just thinking about Thursday. Did some minor household tasks, watched De Zevensprong (my favorite children’s book by Tonke Dragt of which they made a tv serie).

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Fever’s gone!


This past friday the hospital called Victor to tell us that they found an infection in my urine. It is an urinary tract infection, and Victor picked up the medication right away. I haven’t had a fever since Saturday, so the antibiotics seem to be working.

Today I felt much better and I haven’t had to take an afternoon nap for two days. I feel like I have energy again! Still, I will try to conserve my energy as much as possible and get as much rest as I can.

This morning Victor took me to the hospital to get my blood taken. I checked with the Radiology department if it was alright to do it today instead of tomorrow, since it will save me time, and it was no problem.

Tomorrow I have to drink a liter of water mixed with a vial with JOXITALAMINEZUUR an hour and a half before the scan. I cannot find the translation of this acid anywhere, but it is used as a contrast fluid for the CT scan. Last time I didn’t get this but some other fluid via an IV. Maybe they’ll give that to me as well.

I had three visitors today, so that kept my mind off the scan tomorrow. Wednesday is the last chemo of this 9-week period. And Thursday we’ll get the results. I’m very anxious (what Marc calls scanxiety – the nervousness of waiting for scan results). It really helps me to know all of you are wishing the best for me, praying for me and thinking of me. Thanks so much for all your support!

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Week 8


Dear friends and family,

I’m a bit late with my blog this week.  Because I’ve lost weight my pants don’t fit anymore. So on Tuesday I treated myself to two new outfits, which are colorful, casual, and stretch.

On Wednesday I shared a room with the man who – the week before – had to sit on a regular chair because the good chairs were all occupied. Later on he was moved to another room where a chair became available. This room only had beds, which no one likes because it feels like you’re sick. But I got used to it quickly. Fortunately the back of the bed could be placed upright, kind of like lying on the couch.  The man next to me was very talkative, and he enjoyed talking with Victor. He is a local architect who lives and works in Laren, but he knew all about Eemnes.

Just after I arrived, the hospital dietician came by to see me. I had asked for some dietary advice to regain some weight, since I now weigh 49 kilos, having lost 3 kilos since July 23rd. Her colleague had called me a few days before and gone through some of the options, and now she was here to talk with me about my eating habits and ways to gain weight. Basically, my eating habits are relatively healthy, but don’t give me enough calories. So I have to eat more food that is high in calories, cream, ice cream, candy bars, more cheese, anything to increase the calories in my daily intake. It’s actually quite a challenge for me to change my eating habits. The architect next to me told me that all cancer patients have the same problem. He had lost 18 kilos and was actually proud of his new six pack when he got the news that he had cancer. He ate 4-6 candy bars a day to try to gain some weight. Like me, he and his wife ate vegetarian, so he recommended making pasta with mushrooms and cheese. This time the lunch cart came by while the dietician was still with me, so I decided to eat some food: a slice of bread with two slices of cheese and fruit yoghurt.

Carina – a nurse who has helped me before and who is very good – took care of the IV and after an hour and twenty minutes I was done.

That night I had a fever again. And every day this past week, usually around 38.3; not high enough to call the hospital. Usually I sleep it off, which means I’ve been sleeping three hours extra during the day. The rest of the day I do very little, I read a book, I watch a movie, and most days a friend or a neighbor stops by to see how I’m doing. Yesterday, Victor heard from the hospital. They found an infection in my urine; an infection of the urinary tract. He picked up the medication from the pharmacy.

Today I had a fever again, so I went to sleep at 10 even though I had just gotten up. A very strange schedule. Right now I’m anxious about next week. On Tuesday I have the CT scan and on thursday we will hear the results from my oncologist. Wednesday is the last chemo of this 9 week schedule. So next week on Thursday I hope to have good news! Take care and till next week!

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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.

Deva, Nancy en Sheila Ghosh

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.

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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!

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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

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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.

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A run


First I rowed 5 minutes on our rowing machine. But that took all the breath I had out of me. I’m not very fit! I will try to work out more.

Ineke from Viore had warned me that the chemo really impacts the muscle tissue. After she told me that it finally dawned on me that the weight loss wasn’t fat (unfortunately my tummy is still as big as it used to be) but muscle. So now I’m determined to stay fit, as my oncologist suggested. Also I need to gain weight, so the best way I guess is to build muscle tissue.

Then I decided to go running. It went very well. Perhaps I’m a bit too eager, since Silvia – a good family friend who is a cancer researcher – advised me to reduce the time and intensity, and go more frequently. For now, I ran my usual round of 6 km but at half speed, and I paused in between and walked for a few minutes each time to keep my heartrate down.

I think I’ll go again Saturday but do 4 km instead of 6. I hope the exercise will help my muscles gain strength again.

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Treatment #5 – August 15th


Thanks all for all your e-mails, prayers, cards, flowers and visits! They really help me!

Today the treatment was very quick. The appointment was scheduled at 8.30 but when we arrived they had booked me at 11. But it was no problem, I could get the chemo right away. The nurse explained that the first day of the three weeks I will be planned in at 8.30 AM, and the two short ones will be at 11. Wish they had explained this right away, much easier to remember.

Sinds I don’t have the cold cap anymore, I’m done within the hour with the short cure. Nice!

Victor’s been sweet enough to lend me his Macbook Pro, and now I can see my complete email accounts, including a message from Anna which Mail marked as an ad. She has tried so many times to call me, I finally managed to call back. We had a great talk, since she’s had breast cancer she could tell me all about it.

I received a very sweet email from Marianne, who has been diagnosed with ovarian metastases. She has a blog too, but what a difficult time she’s had and still she is such a shining personality, bright and positive.

Today I purchased a wig. Well, I haven’t paid for it yet, since it will be billed to the health insurance and then they will send me a bill. I have no idea what it costs, but it doesn’t matter. I decided to go for a very different look: kind of a glam look.

So please tell me what you think, even if you think it looks terrible, or is way off!

Anyway, I’m happy with it! And one great thing about a wig: your hair is always perfect, never a bad hairday. Thanks to Raymonda van Haar in Balans!

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Viore


–English —

Yesterday Victor and I stopped by Viore. Carien had tipped  me weeks ago and the hospital had given me a beautiful card with the information. Viore is a walk-in center for people with cancer. It is located near the hospital, hidden between the trees and a small parking lot. It was difficult to find at first.

Once inside, we were kindly greeted by two hostesses who offered us something to drink (tea for me, water for Victor). I could tell my story and they explained about the activities they offer – from art to yoga to sport guidance – and gave us a tour. It had been a lab but with the help from many volunteers and sponsors, it has been transformed into a homey environment with different rooms, a living space with a kitchen, a yoga room (decorated with a seascape and beach look), a small fitness room and even a beauty parlor. What else could one wish for?

Today I returned for the sport guidance session. A very experienced physical therapist explains how to use the different machines and monitors your progress. Since running with Flo isn’t working out too well (she usually isn’t in the mood), this seems like an excellent way to stay fit. And so it is. Two experienced and powerful ladies (A & L) were already working out (both have cancer, L is cured and coaches others, A had bad news like me but is super positive). They’re very trained. But when I had to work out on the apparatus (the kind you see in gyms with the bars and rolls) I couldn’t even lift 5 kg with my arms. The only excuse I have is that I never exercise my arms but now I will need to start. With Ineke’s help, I will try to work out at Viore every Tuesday. Fortunately I could get by on the bike, rowing machine and treadmill (running).

Afterwards we drank some tea and talked and then the rain came pouring down. L had come by bike from Blaricum and went back home via the rain. Very impressive. She told us about her experiences with a breast reconstruction gone bad. Very unpleasant, but she is very brave. And A as well. She has metastases in her head and stomach, after almost being cured. It must have been an awful disappointment, but she is very spirited. Fortunately for me I now have two very pleasant trainingspartner I can also laugh with. It’s a lovely place, Viore. Please let anyone know – it is open from 11 to 4 pm in the vacation period and then from 10 to 6 pm. Thanks Viore and all volunteers, hostesses and hosts! I’m very glad you’re there for me and others.

http://www.viore.org/

–Dutch—

Gisteren ben ik met Victor bij Viore binnengestapt. Carien had mij al weken geleden getipt en van het ziekenhuis had ik ook een mooie kaart van Viore gekregen. Viore is een inloopcentrum voor mensen met kanker. Het ligt op het terrein van het ziekenhuis, verscholen tussen de laatste bomen en een parkeerplaats. Eerst konden we het ook niet vinden.

Eenmaal binnen werden we zeer hartelijk en gastvrij ontvangen door de gastvrouwen. We werden verwend met een heerlijk kopje thee en water, ik kon mijn verhaal kwijt en we kregen een rondleiding. Het was eerst een laboratorium maar met hulp van vele vrijwilligers en sponsors is het omgetoverd tot een prachtige, huiselijke plek. Een mooie huiskamer met keuken, een yoga ruimte, een sportzaaltje en zelfs een beauty ruimte. Wat wil een mens nog meer?

Vandaag ben ik teruggeweest voor de inloop sport activiteit. Een zeer ervaren fysiotherapeute begeleidt wie dat wil op diverse apparaten. Sinds het hardlopen met Flo niet zo handig is (Flo heeft meestal geen zin) leek het mij een goede manier om fit te blijven. En dat is het ook. Twee ervaren sportieve dames stonden al klaar en waren volop aan het trainen. A en L zagen er super getrained uit. Maar toen ik uitleg kreeg op de krachtmachine kon ik nog geen 5 kg trekken met mijn armen. Enig excuus dat ik heb is dat ik echt nooit wat met mijn armen doe, maar daar gaat nu wat aan gebeuren. Met hulp van Ineke, de fysiotherapeute ga ik nu elke dinsdagmiddag aan de slag. Gelukkig kon ik toch goed meekomen op de loopband, fiets en roeimachine.

Na afloop lekker bijgekomen, en toen begonnen de stortregens. L was komen fietsen uit Blaricum en moest nu terug door de regen. Zij had een ongelofelijk verhaal over een mislukte borst reconstructie. Heel naar om mee te maken, maar zij is ongelofelijk dapper. En A ook. Zij heeft uitzaaiingen in hoofd en buik, nadat ze bijna genezen was. Heel erg om dat mee te maken. Gelukkig heb ik nu twee hele fijne trainingspartners waar je ook mee kan lachen. Een hele fijne plek, Viore. Laat het iedereen weten, open van 11-16 in de vakantie, en daarna van 10-18. Dank je wel Viore en alle vrijwilligers en sponsors! Ik ben er erg blij mee!

http://www.viore.org/

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