Mitomycine-C treatment at the Antoni van Leeuwenhoek Cancer Hospital

Last monday we had an appointment with the oncologist at 11 o’clock in the Antoni van Leeuwenhoek Hospital in Amsterdam. This time Sheila’s niece Ineke came with us to help us in this process. We were told that we would discuss alternative treatments with the oncologist in order to draw up a plan for the next phase.

However, we were very surprised that we were immediately sent to the hospitalization department. No conversation with the oncologist at 11 o’clock, but a nurse came to us to accompany Sheila to a bed in a patients room. Sheila’s name was already printed on the door of the room. Her blood was taken and after an hour the oncologist arrived. ‘Your liver will be treated today with Mitomycin-C by a catheter inserted via the femoral vein into the hepatic artery. We will keep you a for a few days in this hospital’, she started. ‘We discussed this with the oncologist of the Tergooi Hospital, because there is no time to lose’. Of course, we all agreed with this last remark, but Sheila was not prepared to undergo hospitalization at this moment at all. So we went to a small discussion room to be informed about the plan for the next phase that was already drawn up, apparently. This specialist who was clearly experienced,  explained to us the Mitomycin treatment. This treatment is in 60 – 80% of the cases successful and will be applied three times in three month. She agreed that this all came across as a robbery, so we postponed the treatment to next wednesday October 17th. Ineke had to go to work. I drove her home and then immediately returned to Sheila.

Meanwhile an echo and a picture of Sheila’s liver were taken and she was examined by the dental hygienist. Sheila still had trouble talking and swallowing. The conclusions were that her belly had still too much fluid retention as result of a malfunctioning liver and that the Mucosis was healing. It is likely that her belly will be drained and that this treatment will have to be carried out regularly. Sheila was told that her liver is very sick, but the opening to the stomach is open. Her bone marrow produced plenty neutrophils again.

So, today we went for the Mitomycin treatment. Sheila is able to speak now and her belly has become less thick. The ward doctor prepared her and assumed by the way that her belly will probably not need to be drained. She got a plug in her groin. That will keep the risk of unwanted bleeding at distance. Tomorrow she can go home again. Here is her story:

“I was taken to the radiology dept where I had to lie down on a narrow bed. The radiologist explained he would give me a local anesthetic and then insert the catheter through the artery in the right leg, by the groin. It hurt a little because the anesthetic had not taken effect. He gave me some more. A big square box hovered close above me, it was some sort of camera. They followed the catheter on the screens, which I could not see. The first artery was entered. The doctor went into the room to look at the CT scans. After a while he came out and gave the chemo via a small hand pump.

The second artery was a bit more elusive. Apparently it diverged earlier than expected but the radiologist found it and then injected the other half of the chemo into that side of the liver.

It all took just about 1 hour. The radiologist removed the catheter (I couldn’t feel it) and closed the artery with a plug. I felt that a little. I had to stay still for two hours but after that am allowed to move around.

Victor was waiting for me in the hallway. It was nice to see him. We waited for the transport staff to take me back up to my room. Once there, Victor went to have some lunch and I waited for the two hours to be over.
At two pm I could go to the bathroom and put on my underwear again. Victor went home and I read my book and drank two nutridrinks. My throat and mouth are feeling much better.
My friend Mariette from Bussum came by, she works in the radiotherapy dept. She came by before the treatment as well, its nice to have a friend nearby. Since I still can’t talk much, she left again.
At 5.30 pm they brought dinner. I was hungry, from fasting all morning. I had a cup of soup, a small pancake filled with spinach and vla/custard for desert. The first time I’ve had solid food in 3 weeks!

After 6 dr Baars came by to check up on me. Tomorrow they will check the fluid in my stomach for the cause. She asked me how I felt and I feel fine.
She suggested to meet in 4 weeks in her office and then continue with the second treatment. She also asked about my mouth and throat. They feel much better although I still have some trouble talking.”

We have the feeling that Sheila is in good hands. And she is still in control as far as possible.

It feels like we’re driving at top speed along cliffs without guardrails, but Sheila is an excellent driver and her car is well prepared now ….

At home

Yesterday in the hospital I said goodbye to Emmy and to Sander, my roommates. Emmy is also from Eemnes and wanted to keep in touch. She is in her mid-seventies and has an amputated leg with a prothesis. She is a funny lady, talkative and straightforward. But now she has to learn to walk again.

Sander came in two days ago, but he’s one big smile. He is a young guy, maybe 35 or a bit older. But he suffers a great deal. He can hardly walk, and he cannot sit for more than 5 minutes because of the pain in his back. He was going through chemo for metastases in the liver (colon cancer) when something went wrong with the chemo – it was missing the antinausea medication. So he was sick for days, lost 20 kilos, and then he got an extreme pain in his back. He has a young wife and two little children. It was terrible to see someone in so much pain. When I said goodbye, he grabbed my hand and held it tight. He said he knew when he saw me that I would understand. I left both Emmy and Sander a letter with my contactinformation. Sander’s parents live two streets away from us.

Yesterday Victor took me home around 11. I had trouble talking. It was a beautiful day and I was so glad to be out of the hospital. Once we got home, I greeted Flo who hardly seemed to miss me. It’s so nice to be home again. I relaxed on my couch and later we watched two movies.

Last night I slept really well. Today it rained and I didn’t feel like getting out of bed. But once out, I took a nice shower. So much better than the showers in the hospital, which were a bit out of date, and the showerhead is placed close fo the showercurtain so that it clings to you. And its much easier to shower without being attached to an IV. To change clothes, the nurses helped me by pulling all the bags attached to my IV through my shirt sleeves.

Unfortunately my mouth still hurts and is very painful. I still can’t talk or eat. Victor and I went for a walk with Flo. I had forgotten my glasses so Victor went back and found the doctor ringing our bell. She came to me right away and asked about the pain. Since I still have a lot of pain, she prescribed a painkiller.

Victor picked up the Kalium drink from the pharmacy: its either the drink or the pills. The pills are huge and I don’t think I can swallow them. So I went for the drink, I drank 8ml of the liquid, and it felt like I was burning in hell. My throat was on fire. It was extremely painful. And I have to take this 3 times a day.

I have to drink three nutridrinks a day. I finished 2. One to go. My days are filled with taking medication, nutridrinks and doing nothing. Too bad I still can’t talk. Victor went to the pharmacy again to receive the painkillers: Zaldiar and Algix. I hope this will reduce the pain.

On monday we have an appointment at the Antonie van Leeuwenhoek Cancer Center with the specialists to discuss the options. This is really hard, but I am determined to beat this cancer!


Not what we had hoped for

The last chemo hit Sheila very hard. Although the CT scan showed that her liver had become a bit smaller, the effects of the chemo were hardly noticeable. It seems that the cancer is growing again. Her oncologist suggested that she would get an other chemo named Taxol as soon as her health permits this treatment. Next tuesday her case will be dicussed with doctors from the Anthonie van Leeuwenhoek Hospital.

Last friday we’ve requested a second opinion by the VUMC. We got already their reply that they will take up contact with her oncologist to request her file.

Last wednesday we thought Sheila would be home this Sunday, but two days ago we were told that it would be probably next Tuesday. Meanwhile, her condition has not been improved considerably. She still suffers severe mucositis, has difficulty with speaking and her body is swollen because of fluid retention. Also the fever has returned and she developed an allergic reaction (rash) on the antibiotics.

So far the bad news. The good news is that her immune system is recovering slowly.

Sheila’s mind is still unbeaten and she is convinced that the love we feel for each other will cure her finally.

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.

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!