Second opinion

After I came home from the AVL, I was tired and spent the next few days sleeping, walking a bit and trying to get back some strength. Emmy (my neighbor from room A012 in the hospital) called me on Saturday and told me Sander had had bad news. Sunday morning Victor and I visited Sander in the hospital. He had been told on Friday that there was nothing they could for him. That’s a shock.  On the way out, we saw Wendy, his wife and wished her strength. Also on Sunday, Nancy flew over from London just to see me. She and my mom took the dogs out for a long walk.

On Monday 22nd October, we had an appointment at the VUMC in Amsterdam for the second opinion. The doctor who met us, dr. Westgeest, is a fellow in oncology and explained that he had gone through the dossier and wanted to ask me some questions. He also explained that the second opinion would be that of the team, not just his opinion. He had noticed that the second scan was taken with a different technique from the first, which made it difficult to compare the two.  Also, the liver had changed shape. He could not reach any conclusions based on what he saw, and proposed to do a new scan. But since I’m being treated in the AVL, he suggested to wait with the scan.

He was very interested, and listened well. He asked why we asked for a second opinion. I felt that the last results were somewhat unclear, especially the scan, which two radiologists and my oncologists all interpreted differently. Also, the treatment my oncologist had proposed (Taxol) and the one I was now receiving at AVL (Mytomycine) were quite different. So I want someone independent to review the choices and also to help me make new ones as we progress.

Since I was already being treated by the AVL, dr. Westgeest intended to call them, as well as Tergooi and our GP dr. de Bruin. He checked me physically and also needed blood results. A colleague of his is doing a study on particles in blood which may be used to diagnose or track cancer, and he asked if I would be willing to donate two tubes of blood. I agreed and waited for his colleague, Koen. Unfortunately, the nurses had all gone home for the day. Koen tried to draw the blood himself, but it didn’t work because my veins are so hard. So we agreed to return the next day.

On Tuesday, we went to the lab where Koen met us. I was helped right away by an experienced nurse. She had all the tubes filled in no time at all. That afternoon we went to a store in Bergschenhoek where I’d seen a comfortable couch. I sat on it and was sold. The couch will be delivered on Monday.

Later that day Victor received a voicemail from Dr. Baars from the AVL. She had gotten the blood results from dr. Westgeest and told us that the liver values had improved a bit. This is less than a week from the treatment, so I’m hoping they will improve further.

On Wednesday and Thursday my condition improved, and I started eating solid foods again. We received the good news from our friends Jasper and Alice that their son Arthur was born on Tuesday evening. Alice also has metastasized cancer and needs chemo. On Thursday dr. de Bruin stopped by to tell us she had spoken with dr. Westgeest and was informed of the treatment at the AVL. When we said we were worried about the cancer spreading, she said that the cancer is already in the body, and is unlikely to disappear, so it is a matter of time. She also said that different specialists have different approaches, AVL is focusing on the liver, which is the most urgent. Next Monday we have a second appointment with dr. Westgeest. And on November 14th, I have the second treatment at AVL.

This week I’ve improved a lot. I can take walks of about 20 minutes, I can go to the store, eat solid food again and talk. After three weeks of hardly talking, it’s nice to be able to talk and to eat again. Physically, I feel better every day. In the afternoons I get a bit tired, and then need to lie down for an hour or two. But otherwise I feel ok. It’s just strange that I can only look a month ahead, so making plans is not possible at the moment. But I’m enjoying every day and I try to enjoy the small daily pleasures, the sun shining, a walk, friends and neighbors who stop by. In short, just enjoying life!

11 Replies to “Second opinion”

  1. Wat fijn te horen Sheila dat je je beter begint te voelen. Moet het dragelijker maken voor je. Er zijn veel mooie small daily pleasures. Wensen je veel liefs toe. X van ons

  2. wat zijn we blij dat je weer (bijna?) normaal eten en drinken kan! Hopenlijk geven de volgende behandelingen niet zulke verschrikkelijke bijwerkingen. Veel liefs van Paul en Isabelle

  3. Dear Sheila, Good to hear your that treatment is progressing, that you are in competent hands, and, most of all, that you are feeling better. I am leaving for Montevideo tomorrow to visit my family, (specially my mother who is 91 tears old), and will be back in two weeks. I will follow your blog to have news of you. Love, Silvia ________________________________

  4. Hi Sheila, wat fijn om weer iets van je te horen! We maakten ons al zorgen… Goed om te horen, dat je eindelijk weer iets vooruit gaat. Ik kan me voorstellen dat het goed voelt om na 3 weken, weer wat te kunnen praten en eten! We duimen voor je, dat de kuur goed blijft werken! Het is natuurlijk wel confronterend om te horen, dat je slechts levensverlengend behandeld kunt worden… Maar gelukkig blijf je positief en geniet je van de kleine, fijne dingen in het leven! That’s the spirit!
    Heel veel sterkte en beterschap!


  5. Fijn dat je je beter voelt en kunt praten en wat eten. En heerlijk naar buiten af en toe, wel koud, maar mooie kleuren. Als je je sterker voelt ben je dat ook!

  6. Lieve Sheila, wat fijn om te horen dat je de dag plukt en geniet van elk moment. Een grote geruststelling dat je weer kunt praten en eten en dat de ergste pijn voorbij is. En die laatste behandeling was blijkbaar een schot in de roos. Goed nieuws dat die kuur zo goed is aangeslagen! Fijn weekend.

  7. It must be reassuring to get another opinion, more information and answers to questions. The unknown is so unsettling, and the more you know the better you feel. Good to hear you are eating more – and getting those walks in. Both such positive and important things. I was at the coast last week and met up with Kristin Sliwa! We spoke of you and of Holland, and we had many laughs reminiscing times from grade school and high school. Always good to keep laughing. Thinking of you and sending light and warm thoughts your way!

  8. Ik heb nog niet eerder gereageerd maar volg je verhaal met mijn “fingers crossed” sinds ik van Ilonka de Ridder hoorde dat jij kanker hebt. Ik heb jou ontmoet bij Ilonka toen ik daar nog werkte. Sinds twee jaar werk ik als coordinator bij het Vicki Brownhuis, inloophuis in Den Bosch.

    Ik ben onder de indruk van jouw kracht, jouw blog en je grote groep volgers.
    Ik vind het ook erg fijn te horen dat je je nu beter voelt en geniet van elke dag!
    Blijf dat doen en vergeet niet aan te geven wat wij volgers kunnen doen om jou te steunen.
    Je bent een kanjer en verdient alle steun die wij kunnen geven.

  9. Hi Sheila, goed om te lezen dat er vooruitgang te zien en te merken is. Daardoor kun je tenminste weer meer mobiel zijn en weer lekkerder eten. Mooi! Keep up! Groet, Henk

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