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 ….
8 Replies to “Mitomycine-C treatment at the Antoni van Leeuwenhoek Cancer Hospital”
In a jaguar no doubt!
Blij dat ze meteen actie ondernemen.
Hoop dat Sheila’s vragen beantwoord zijn…
Hopelijk heb je minder bijwerkingen van deze behandeling Sheila
Beste Victor en Sheila, zo zo snel moeten schakelen en beslissen in een nieuw ziekenhuis… wat een rollercoaster! Onvoorstelbaar, dat niet met jullie besproken was dat Sheila meteen opgenomen zou worden en wat dapper, dat Sheila heeft besloten het nog heel even uit te stellen om er over na te denken. Uiteraard heeft iedereen het beste met je voor en heb je kennelijk geen tijd te verliezen… Ik hoop dat je bij 1 van die 60-80% hoort, bij wie Mitomycin aanslaat. Wij gaan weer voor je duimen!
Lieve Sheila en Victor, wat jullie allemaal in zo’n korte tijd moeten doormaken en hoe jullie er mee omgaan, daar heb ik heel veel bewondering voor. Fijn dat jullie in goede handen zijn, beter is er volgens mij in Nederland niet te krijgen. Heel veer sterkte en mijn vingertjes zijn gekruist, liefs Claudia x
Je vraagt je af of artsen wel enig benul hebben in wat voor mentale toestand hun patienten zich bevinden! Een patient ook nog als mens te zien schijnt te worden verdrongen(?). Hopenlijk weten ze wel wat ze doen en gelukkig heeft het Antonie van Leuwenhoek Ziekenhuis een goede naam!
Sheila we wensen je vooral snel verbetering in je algemene toestand en natuurlijk ook, heel sterk, dat de behandelingen aanslaan. Veel liefs van Paul en Isabelle
Dag lieve Sheila en Victor, wij duimen voor jullie en hopen dat de weg naar herstel is ingeslagen. Als ik het goed begrijp is Sheila vandaag weer thuis. Ik hoop dat het weer bij jullie net zo mooi is als hier bij ons. Een stralend zonnetje, morgen wordt het ook mooi weer als het goed is. Fijn om te horen dat Sheila weer iets kan praten, ik hoop dat de pijn snel minder mag worden. Zondag zal ik een kaarsje voor jullie aansteken voor sterkte en beterschap. Een warme omhelzing van Robin en Cristel, Lynn en Jim.
word je de 14e ook weer opgenomen?
Ja, Wendy. Ik word inderdaad opgenomen. Ik denk 1 nachtje, mogelijk 2.