Month: August 2017

Thank you all for giving me stuff that I can use to brighten up my room. I appreciate everything that people have done to improve my long and isolated stay in Hoofddorp.

There is an incredible amount of pills that is being given to me as a prophylaxis. Mostly anti-bacterials, or anti-fungals to make sure that I will not develop an infection without an immune system.

Here is an overview:

7.00h

• metoclopramide (anti-sickness)
• feneticilline (antibiotic)

9.00h

• paracetamol
• vitamin D3, cholecalciferol
• dexamethasone eye drops (against eye infection)

10.00h

• ciproxen (antibiotics)
• fluconazol (anti-fungal)
• tobramycine (antibiotic drink)

11.00h

• metoclopramide (anti-sickness)
• feneticilline (antibiotic)

14.00h

• tobramycine (antibiotic drink)
• dexamethasone eye drops

16.00h

• feneticilline (antibiotic)

17.00h

• metoclopramide (anti-sickness)

20.00h

• tobramycine (antibiotic drink)
• dexamethasone eye drops

22.00h

• ciproxen (antibiotics)
• feneticilline (antibiotic)

Adrienne is back from Manila and is here for an extended visit, which is great. She is using the ‘guest room’ of the department and is still asleep (who blames her, it’s 8.20h on Saturday).

I am feeling a bit worse again. Yesterday and today I started the day by throwing-up my breakfast. Luckily I don’t feel close to as bad as I did during the chemo. Hopefully, like yesterday, the rest of the day will be rather ok.

I have started to feel better since yesterday. Apart from being super exhausted after doing anything (even walking to the bathroom), I am doing much better. This weekend I felt sick, nauseous, had a headache and was shivering. Luckily these symptoms have stopped since the chemo ended Monday night. They gave me the chemo agent Ara-C for four days (Friday–Monday) and then twice per day; 9-12h in the morning and 21-24h in the evening. 

Yesterday I also changed the room, they had a bigger, more modern looking isolation room free. This room looks bright and is more spacious.

As a side effect, this chemo will wipe out my immune system, which is why I am in isolation. They monitor the blood levels of the lymphocytes and when they start to grow again (they are still dropping now), I will be admitted to the VUmc, for the stem cell harvest. Their guess is that that will happen around two weeks from now.

Just a quick update to let you know how I’m doing. Not too great, I’ve been feeling nauseous, shaky, and exhausted. Hopefully, it will pass soon. The hospital staff is nice, the room a bit small, and since I’m in isolation I am not allowed off the room. Two visitors can come at the same time, and they have to pass through a double door ‘airlock’ and wash/disinfect their hands before coming in.

Tonight I will be admitted to Spaarne Gasthuis, in Hoofddorp . I called the head nurse of the hematology department today to tell her that I was surprised by the last minute changes to the treatment plan and to talk about what I can expect. She told me that they carefully talked to the VUmc yesterday with the team of experts there, about my situation and that they agreed that a four-day course of Ara-C was more suitable than a two-day course. She told me that tomorrow morning they will place a PICC line at the radiology department. This is a catheter that will be used for the administration of the chemo therapy, antibiotics, and other medications. At the same time, this catheter can also be used to draw blood for blood tests.
The Ara-C will be given twice per day for four days. Because as a side-effect it will destroy my platelets and white blood cells, I will have to be in isolation until the immune system is restored. This could take 3-4 weeks she told me. Isolation means that I can’t leave my room and that there can be only two visitors at the same time in my room.
They will treat me with antibiotics as a precaution to prevent infection; sepsis could lead to serious complications.
I feel ok at the moment, my hair has started to grow again, and my veins have stopped hurting. It feels counter intuitive to go to the hospital to feel sick. I have to try my best to keep the end goal in mind.

The address for regular mail is:
Spaarne Gasthuis
T.a.v. Bram Platel
D3 Oncologie, Hoofddorp
Kamer 3C02
Postbus 417
2000 AK Haarlem

The hematology department at the VUmc called me this morning. They told me that they were having problems and were over booked. Therefore they will now admit me to the Spaarne Gasthuis, a hospital in Hoofddorp that the VUmc collaborates with. If you thought the VUmc was far away for visitors, they just proved that it can be worse. Tomorrow evening I will be admitted and the chemo will start on Friday.
Also, the hematologist of Spaarne called me today and told me that his opinion was that the planned two-day course of Ara-C (the chemo agent), was too short. He told me that he spoke to the VU (some hematologist I have not met) and increased this to four days. These last minute changes make me extra nervous. I thought the treatment plan was well thought out by the experts at the VU, I wonder wether it is a good thing that this plan is changed by a hematologist who doesn’t know the ins and outs of my very complex case….