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Hospital treatment.


Yesterday (sunday morning) I had to sit in a chair to measure my weight. I now weigh 56 kilos. A week ago I weighed 50 kilos. My belly is twice wat it was and also my legs look like they belong to someone else. Fat ankles and thick thighs. Nothing like my former self. Well, the doctor prescribed diuretics which were added to the IV but they haven’t had effect.

Swallowing is still difficult as is talking. Nancy came in the morning and again with my mom in the afternoon. I had selected a meal but it turned out that I still can’t eat food, mostly because my mouth is sore. I also felt short of breath and anxious.
Eveline from the Zontas came and gave me a Zonta pin, which is very nice and some fig jelly from Italy, and a plant.

Victor came at 6.30 pm. One of the problems I have is an excess of saliva. According to the doctor this is because my mouth is very irritated. I have to spit it out, but this is hard to do when you’re sleeping, which is one of the reasons I haven’t slept much. We asked the doctor about painkillers and he said he could prescribe them if I wanted them, but chances are that I would react badly to them, since I couldn’t bear the tramadol I was given before.

One of the nurses had given me a special mouthwash specifically for oral mucositis. It reduces the pain and irritation by creating a layer of protection. I’ve been using it since then and I think it helps.

After Victor left I went to sleep, which I needed to catch up on. I woke every hour but was still able to get some rest. At 11 I was given a sleeping pill which I took and which helped me sleep through the night.

This morning when I woke up, I had pain in my mouth, but less than other mornings. I drank ice water and noticed the swallowing was less painful. I felt much better than yesterday. I still cough a lot, probably also because the air is super dry here.

I think the strepthroat may be gone (its hard to say) because my throat feels better. The only things that hurt now are my mouth and swallowing. Hopefully the recovery has set in.

The new doctor introduced herself and has told me she will do something about the fluids that I’m retaining. She later explained in the hallway when Victor was here that I have a low red blood cell value which needs to be improved by adding blood. The white blood cell count is slowly increasing. Tomorrow we will hear more, I hope.

Victor is not pleased at all with the way I am treated in this hospital. So he called the oncology nurse this morning who was also surprised to hear about my current state. She will schedule a meeting with my oncologist and us tomorrow.

My red blood cell count is very low so the doctor arranged for blood. I’ve already had two bags and the third one is coming.
Thanks to Roxanna the nurse on duty who didn’t trust the sounds coming from my stomach, the night doctor examined me. He was the day doctor last week and he confirmed my belly was much smaller. He’s been very helpful all week. He pressed down on my stomach and it hurt. So he said he will consult the oncologist on duty and draft a plan tonight. I will get an echo tomorrow.
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48 hours and counting


Thanks Victor for updating the blog while I was ill. Victor brought me my iPad this morning so now I can write about the last 48 hours.

I’m in a room with a view of trees and grass. My bed is close to the window.

There are three other patients in the room, all with cancer. The two ladies are terminal and will move to a hospice. One just turned 50 and is quite fit, but the cancer has spread to her brain. The other is a small woman who is very quiet and can’t leave her bed. The gentleman across the way is leaving tomorrow. I’m not sure what he has but he will go to the AVL cancer hospital for radiation.

When I came I was extremely cold, cold shivers. An hour later my temperature was 39.9. I got into bed right away and got warm blankets. A nurse took blood for the tests which they do when you have fever.

The doctor was very kind and explained they would put me on two antibiotics, one for the the throat and one general type. They placed the IV needle and started me right away. Victor left to get me all the things I would need for the night.

The antibiotics are given at 10 and12 pm and the IV pump has an alarm that goes off when it’s done. I slept little that night. Thursday morning I woke with pain in my mouth. At 6 the new antibiotic is given. At 8 they come by with breakfast. Since I can’t swallow, I’m given a nutridrink which has plenty of nutrients and calories. It still is hard to swallow and it takes me all morning to finish one bottle of 200 ml. What helps is ice, a waterbased icecream. I had visitors, my friend G came by at 10.30 but since it was outside of visiting hours her visit was cut short. My mom came in the afternoon and Victor came at 18.30, Ingrid came at 7. I still have trouble talking.

At night again trouble sleeping. I can fall asleep but wake up easily due to the IV alarm, noises around me etc. In the morning I woke up with a swollen mouth.

Today was a trying day. The morning was alright. The nurse helped me and asked the doctor to look at my mouth. I have oral mucositis which is common among chemo patients. It is something that heals on its own but is very painful. I drank two nutridrinks and ate a pudding desert.  I did manage to go outside around noon with Mariette my roommate who wanted a smoke. It was nice to get some fresh air.

The doctor came by with the specialist internal medicine and she prescribed painkillers. Victor was worried about my treatment and came to speak to the doctor. He confirmed what we know which is that it takes time to heal from the condition I have, since my resistance is terribly low.

Unfortunately for me I reacted very badly to the painkiller medicine. I started to vomit uncontrollably, but since there’s no food in my stomach I vomited slime with some mouth lining. It left me pretty shaken. The nurse gave me anti-vomiting medicine through my IV and that helped. I’m now on paracetamol (acetominaphen) which is fine. It doesn’t relieve all the pain but it makes it a bit easier to swallow. I sometimes cough suddenly when there is saliva stuck in my throat. I have a lot of saliva but it hurts to swallow it so I spit it out a lot.

Now I’m feeling a little better. I guess I have to be very patient and resign myself to the fact that I’m stuck on liquid food for the next few days.

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Down’s and Up’s


It began yesterday. By the end of the day Sheila became tired and felt more and more pain in her throat. She tried to sleep, first on the couch but later she went to bed. However, she could not sleep and in the middle of the night she took an Ibuprofen. That was not a good idea. It stuck in her esophagus and the pain got worse. Initially we thought she had Candida, because her tongue and palate saw white. She could not talk anymore because of the pain. Around 7 in the morning I called the house doctor services. They could not help, so I called the specialist in this field and we arranged an appointment at 9.10. A clinic nearby the hospital. The doctor examined Sheila and stated that there was no sign of candida. But she could see that her throat was red and pretty swollen and she was developing fever. In the meantime Sheila was shivering and looked more and more worse in the eyes of her observers. The doctor advised us to go to the hospital (merely around the corner) to take a blood test, at least. With the latest experiences in mind, Sheila refused to go to the emergency services. We were convinced that the studies of a few days ago (which took more than three and a half hours) would be re-executed, resulting in the same conclusion: ‘we cannot find anything’. We went to the outpatient oncology. The attending nurse retrieved Sheila’s file and consulted her oncologist. Sheila was shivering more and felt really bad. She could only whisper and stopped talking finally. Her blood was taken and she got a bed on a ward. Her temperature had been risen to 39.9 degrees. After a few hours we got the message that she suffered neutropenia: the chemo had flattened her immune system. She received intravenous antibiotics. Meanwhile, she send me home to buy some initial requirements. I bought a small suitcase (of course, the one we just had discarded!), underwear, bathrobe, sleeping shirt, socks, you name it, etc., etc…Meanwhile in the hospital a lung picture was taken from her. When I came back she was still in pain, in spite of the intravenous antibiotics and pills she got. No real doctor seen or spoken yet, no complain. Sheila ordered me to get more analgesics. So, I bought dissolving paracetamol at the pharmacy of the hospital. That was a real relief for her. Pfffft. I cannot stand that my love is suffering in pain while everybody around her is busy with procedures and protocols that take a real lot of time and solve nothing concrete for her sake. Due to an empty battery of my phone, I was unable to take a picture of her lying, but now smiling in the bed of the hospital. And by now her loving mother is with her!

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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!

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Meeting with the oncologist, Sept 13, 2012


I was so nervous last night that I couldn’t sleep. I had itchiness all over the past few days and was worried maybe the billirubin had risen.

This morning we had an appointment with the oncologist dr. van den Berg. He is a very empathic, amiable and knowledgeable oncologist with a good reputation. Dr. van den Berg greeted us kindly and invited us into his office. He asked me how I was feeling. I said I was feeling much better now that I had the antibiotic for the infection and no longer have fevers. Of course I have some minor side effects which cause minor discomfort, but on the whole I feel fine, and don’t have problems such as nausea or vomiting, what many patients experience.

Dr. van den Berg told us the billirubin had stabilized at 22, which was good because normal values should be between 17 and 19. He said the liver had stabilized enough, so the chemo had worked and the liver was functioning as it should.

The CT scan showed that the liver has not yet decreased in size. Also the tumors have not decreased in size or number. But the color of the tumors had changed; they are now a dull, vague color, whereas they were very clear before. This means that they have stopped growing and are no longer expanding. The tumor marker he is tracking is CA 15.3 (CA stands for cancer), which is measured in the blood. The tumor marker has decreased, meaning the tumor is no longer growing. Also, there are no new metastases outside the liver.

Dr. van den Berg said he was moderately optimistic. He said this has increased our chances and has bought me time. He explained that he wants to increase the dosage of the Doxorubicine (Adriamycine) which is the chemo that targets the breastcancer. This is the chemo that was given to me in a very low dosage over 3 weeks, because of the possibility that the liver couldn’t manage it. Now that the liver is functioning normally, he feels it is safe to increase the dosage to more than 3 times what I was getting up until now, which will help to reduce the cancer cells in my body, specifically the liver, but also the breast. We will change to a cure of three weeks, which means one week chemo and two weeks recovery time.

I will start with the new cure (both Adriamycin/Doxorubicin and Cyclofosfamide) next Wednesday (19-9), and will come back to see him in four weeks time (15/10). For now, we’ve got the second cure planned on 10th of October, with a visit to dr. van den Berg on Oct 30th. A new CT scan will be planned just before, unless the blood values are enough to see the progress. Once the cancer is diminished in the liver and the liver is back to its normal size, he will see what we can do about the tumors in the breast and lymph node. For now, the focus is on removing the cancers from the liver as much as possible. Dr. van den Berg believes the higher dosage will have the impact that is needed. So, the new round of chemo will have to do the job! I’m am happy that this round of chemo will be much stronger and – I’m assuming – more effective. I’m sure it will impact me much more than the previous round, but I won’t have as many needles stuck into me which will help because my veins need a bit of a rest. I don’t know how many rounds I will receive, but that will depend on the initial results.

On a lighter now, I just wanted to share with you a line from a movie which we borrowed from Marita, our neighbor. The movie is the Best Exotic Marigold Hotel: for the elderly and beautiful which is a wonderful film about several British people who – for very different reasons – decide to relocate to a hotel in India. Of course, the hotel is nothing like the brochure (“It is a vision, ma’am”, explains Sonny, the young hotel manager, “of how it could be.”). But each guest (and Sonny too) copes in his or her own way, and discovers something important to them. What Sonny tells his guests (and himself) is a life lesson in and of itself: he says “It will all be all right in the end. And if it is not all right, it is not the end.” And that’s how I see it too!

So the next weeks I will probably have little news, but I will keep you posted of how I feel. Thanks for all your lovely comments. I cannot reply to each of you individually, but I am moved by your positive thoughts. Take care!

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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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