Ben told one of the doctors last week that I had a strange episode on the Sunday before, an episode in which I sat on the couch in the verandah with him and the boys and apparently had no memory of having had surgery in Melbourne, despite the baldness and new scar (and ongoing mild pain) on my head. I have no memory of this incident of confusion or impaired memory for recent events, and it doesn't make any sense to me from my background in neuropsychology and 16 years in working in an epilepsy surgery program. Ben thought it was an absence seizure, but my understanding of absence seizures do not involve a loss of memory for something that has happened, they involve distraction from the current reality and it's usually difficult for a person having an absence (or simple partial seizure (SPS)) to be involved in any kind of conversation. Children with such seizures are usually thought to be daydreaming. They are utterly involved in the distracting day-dream like experience of the SPS, and cannot easily be brought back to the current reality. To lose autobiographical memory in an ictal (seizure) event is not something I've ever heard about, although post-ictal confusion is often observed, and I've seen it in patients myself, in the rare cases when they had seizures around the time I was seeing them, but it was for the seizure event itself, not for something that happened weeks before. I didn't have a motor or complex partial seizure prior to this event, though Ben thinks I may have had a non-motor seizure before the episode and lost memory as a result of it. The boys verify his account of me sitting in the verandah and not being clear about having had surgery, but I just don't understand this in terms of what I know about seizures. The EEG that he arranged for me through one of my oncologists in the early days of last week was reported to show spike activity in the anterior right temporal region, and was said to be consistent with scar tissue from the surgery, but anterior temporal lobectomies (ATLs) are usually conducted to remove abnormal brain tissue (like hippocampal sclerosis) that causes seizure activity, and I've never heard of people having seizure activity as a result of an ATL. ATLs are done to prevent further seizures, not to cause them. The reported recording of spike activity in the anterior temporal lobe makes me worry that there may be formerly unknown abnormalities there, so I'll call my oncologist tomorrow and see if we can arrange another MRI. I don't need any new tumour growth. It's bad enough to realise that the bit that the surgeon couldn't resect 5 weeks ago counts as an "inoperable tumour", despite the optimism about Avastin shown by both him and the oncologist. I was grateful to the Melbourne neurosurgeon for saying that he didn't want to remove a tumour wrapped around a blood vessel near my midbrain in case it caused paralysis - that was an honest explanation that I could appreciate. It was my overly active mind that recently told me that it was an "inoperable" tumour, and that this doesn't fit into a good kind of thing to have.
I've done okay after my first treatment with Avastin around April fool's day, although I'm annoyed at my ongoing levels of fatigue; by my need to sleep in; my disturbed sleep most nights; and my difficulty to multi-task and concentrate on everyone in the family, even one at a time, when I am awake. I'm also still frustrated by my difficulty in completing all the household tasks as quickly and efficiently as I used to, and in needing to ration my energy and concentration resources for the things I think are most important. These frustrations aren't major (I understand the basis for them), but they exist, and I'd rather they didn't bother me or my family. Such changes in my ability to function as a mother and housewife have caused ongoing difficulties in our family, and although I am educated enough to calmly stand up for myself, and to try to educate my husband and children, it's not an easy task, and I wonder how it would be for patients who are not neuropsychologists. There has been precious little education of myself or my family on what to expect after surgery, possibly because they assume we know it all, after having been it before, or possibly because I'm a neuropsychologist and Ben's a doctor. However, a cancer-care-coordinator giving some advice to both of us together, would be a helpful thing, and maybe they could talk to the boys about any concerns they might be having.
I haven't had much experience with brain tumour patients - where tumours may be benign or highly malignant - but I've learnt (from reading brain tumour forums) that the potential for recurrence, even in low-grade tumours, is an ongoing source of concern for patients and their families, and that there's no such thing as good brain tumour, or even a good form of cancer. While conditions like MS and dementia can cause chronic deterioration and eventual death, there are various treatments available, and GBMs seem to be more random and quixotic, and potentially rapidly fatal (I try not to dwell on that, or even think about it. Denial is a fantastic defines mechanism). Despite my knowledge of my condition, my insight into my attentional difficulties, my understanding of my fatigue and need for rest, and my attempts to educate and inform my family about these things, the changes brought about by my multiple tumours and surgeries have been difficult for my family to handle at times. We'd probably all like things to be the way they were before I had any type of cancer, but we don't talk about that openly. We go on pretending that nothing much has happened, and being glad that I'm out of hospital, after spending more than 150 days and having at least 15 admissions for surgery, diagnosis, or infection in 2013-2014.
I haven't had much experience with brain tumour patients - where tumours may be benign or highly malignant - but I've learnt (from reading brain tumour forums) that the potential for recurrence, even in low-grade tumours, is an ongoing source of concern for patients and their families, and that there's no such thing as good brain tumour, or even a good form of cancer. While conditions like MS and dementia can cause chronic deterioration and eventual death, there are various treatments available, and GBMs seem to be more random and quixotic, and potentially rapidly fatal (I try not to dwell on that, or even think about it. Denial is a fantastic defines mechanism). Despite my knowledge of my condition, my insight into my attentional difficulties, my understanding of my fatigue and need for rest, and my attempts to educate and inform my family about these things, the changes brought about by my multiple tumours and surgeries have been difficult for my family to handle at times. We'd probably all like things to be the way they were before I had any type of cancer, but we don't talk about that openly. We go on pretending that nothing much has happened, and being glad that I'm out of hospital, after spending more than 150 days and having at least 15 admissions for surgery, diagnosis, or infection in 2013-2014.
The changes to my sense of identity from having had breast and brain cancer, and from not being able to work for the past 2 years have been unexpected. I had no true idea how important my career and work were to my sense of self before I as diagnosed, and it's not something I've explored in any great detail before now, because I'm simply trying to get by and stay healthy, happy, and connected to others, and to even recover, if I can.
We'll be travelling early next week to see the neurosurgeon for a review, and to see a radiation oncologist for stereotaxic radiotherapy at a private hospital the next day. He seemed optimistic that I'll only need one treatment. It's all happening so quickly, it seems very surreal, and I have a strange sense of "jamais vu" ('never seen' - kind of the opposite of deja vu) about a lot of what is going on at present.
If I could remember my dreams and write them down, I suspect people would be fascinated. My dreams are very strange and often remind me of some of the most bewildering fantasy stories I've read. The chaotic and churning melody and tempo of the song "love is a battlefield" comes to mind as an example of the disconcerting soundtracks playing in my dreams. The music in the song, not the words, are what I'm talking about - a kind of rhythmic, churning, structured chaos. The scene featuring the Dementors in the stormy Quidditch match in the Harry Potter and the Prisoner of Azkaban movie is another example of my disturbed sleep-scape. Similar scenes that mirror the alteration of reality and confused emotions that feature in my dreams include the later revelation in that movie, set in the Shrieking Shack, that Scabbers the rat was actually Peter Pettigrew, a wizard who betrayed Harry's parents. Similarly, the scene in the cemetery in Harry Potter and the Cauldron of Fire, where Lord Voldemort came back to life after Cederic Diggory was murdered, reminds me of the strange kind of dreams I'm having, not that I'm dreaming myself in HP scenarios, just that my dreams represent an unexpected version of reality. Maybe I shouldn't watch any more Harry Potter movies for a while, though it's not like I've watched them repeatedly, or even very recently. I was telling the boys tonight that the books in that series are the only novels I've ever read more than two or three times (except perhaps, Douglas Adams' Hitchhikers Guide to the Galaxy series, and his Dirk Gently's Holistic Detective Agency books).
Time for sleep and restful dreams of peaceful beaches with warm sunlight, gentle breezes, friendly people, and laughing children. Or of beautiful, still, green forests with dappled light. With gentle, happy classical music by Mozart or Vivaldi playing in the background, or even some early Enya or similar New Age music (excluding the dreadfully repetitive and saccharine 'Orinoco Flow') ... drat! now I've done it! I've created an ear-worm just by mentioning that song. Time to think of something else, and soon!.
