Super NurseMay 19, 2009
The Neuro-Oncologist told us last week to contact the Super Nurse for more information about the end-phase. So we made an appointment with her for today. When we arrived she was already waiting for us. We had a number of questions for her:
1> can you please define the end-phase?
2> will I be in pain during this end-phase?
3> can I donate my body to science?
4> what if Monling can no longer take care of me?
The end-phase is defined as the phase where nothing (medication, surgery, radiotherapy, chemotherapy) helps anymore. This phase will take a maximum of two to three weeks. In this end-phase you’re treated with drugs that make sure that you have no pain and make you tired until you loose consciousness (coma) and finally pass away.
During this end-phase patients can’t stay in the hospital (mostly because they can’t treat you anymore so they need your bed). Most die at home, other people want to die in a hospice (it mainly depends on whether you have family taking care of you or not). Over the next weeks I’ll try to find some information about hospices.
Super Nurse’s answer to my question about donation was disappointing though understandable: I can’t donate my dead body for transplantation purposes because I received chemotherapy. Only the cornea (NL: hoornvlies) can be salvaged. Then I told her that I also was willing to donate my body to medical science. She told me that she already asked the right department and received an e-mail from them (dept. Anatomy and Neuroscience). She gave me the e-mail with the telephone number in it. I’ll call this number one of the following weeks.
We asked her also about the DCVax and she answered that I must comply with many rules and regulations, one of them being that I must have a tumor of the 4th grade (most severe grade Glioma). I ‘only’ have a (2nd grade) astrocytoma in my motor function area and an anaplastic (malignant) astrocytoma (3rd grade) in my speech function area. So no DCVax for me yet (fortunately).