machshefa: (patronus)
[personal profile] machshefa
Hi everybody.

I wanted to give you all an update on T. I spoke with her husband not long ago and the news is not good. He said that T was awake and groggy and that everything the doctors told him has been shared with her. He has given permission for all of this information to be shared with the community. Please do boost the signal so that the entire community is aware of what is going on. Thank you all. 

The news:

1. The surgeons discovered that the tumor was creating a great deal of pressure in the brain, and this was relieved by the surgery. We didn't discuss the implications of this, but I assume that relief of pressure will mean relief from some of her symptoms, but I don't know this for sure.

2. The tumor was found to be very advanced (Grade III or IV, which will be determined once the full biopsy is completed). It is a Glioma (Glioblastoma) which is the most malignant, aggressive brain tumor there is. This is, unfortunately, not the news anybody was hoping for, though it is consistent with the doctor's prior suspicions based on the CT and MRI scans done over the last few days.

3. The neurosurgeon did not remove all of the tumor because he wanted to avoid doing anything that might reduce her quality of life. Leaving part of the tumor does not impact her prognosis because even a “complete” removal is not complete... These tumors always come back. The goal is to keep the brain tissue as unharmed as possible to as to preserve her highest level of functioning.

4. As it turns out, it doesn’t matter when they would have found the tumor. The prognosis is the same with these tumors no matter when they are discovered. T’s husband told me that he’s grateful that they didn’t know earlier (and feels that T would feel the same way) because instead of being preoccupied with treatments and worries, they have spent time doing things they wanted to do and cared about over the last few years. There is nothing anybody could have done differently. There was no missed opportunity to make this different.

5. The doctors are talking about discharging T on Friday. The family is planning to return home at the end of the week.

6. T’s husband asked me to call her tomorrow. I hope to reach her and will be able to convey her wishes regarding what sort of contact (how, how much, etc.) with the fangurl community after we talk.

7. The doctor did not give T’s husband a specific “timeline” for what to expect. They plan to pursue radiation treatment and chemotherapy (which, he said, is in the form of a pill). This was the plan several hours after they received the news... once back home, they will meet with local oncologists and make a more comprehensive plan. These treatments are, again, intended to improve quality of life and, perhaps, to extend life. They are not expected to “cure” the cancer. This is a very painful but very important detail to understand. T’s husband and T are approaching this with eyes wide open.

What we can do as a community:

1. Stay available to T while remaining respectful of whatever level of contact she wants at any given time. It’s hard to know how T will want to interact with the fangurl community, so it’s our job to pay attention and respect that sometimes she may want to jump into conversation and giggle, and other times, she may want to cry, or yell, and other times, she may not want to talk at all.

2. Know yourself. Know your own limits and strengths so that you can be composed and grounded when you offer T support or companionship.

3. Support T’s close friends. (Check her flist... :)). Supporting her friends allows them to better support her.

4. Record podfic of SSHG stories. It’s not yet clear whether her visual field will still be impaired when she recovers from surgery. She had been having trouble tracking and reading, so having recorded stories for her to listen to will be an enormous gift. Record your own stories, or ask a favorite author if you can record her stories... Let’s get a library of recorded podfic together for her. MiaMadwyn has offered the library of stories recorded for her after her surgery last year, so we should have quite a large collection soon.

The smokingbaby community should be up and running in the next couple of days. We will be posting additional information about the podfic project there when it’s available.

5. Some people have asked about cards and care packages. We will get back to you about this so that we can coordinate delivery without compromising T’s privacy (with regard to where she lives). T has been historically strict about keeping identifying information out of public sight, so we plan to organize a mail forwarding system, where one fangirl plays postmaster and forwards cards and care packages twice a month over the course of her treatment.

6. Now that the biopsy results are in and they know what sort of tumor this is, it’s very difficult to know what to say, and people’s natural impulses in times like this - to share stories of people who’ve beaten this kind of cancer, or died from other kinds, or suffered from other serious conditions - are unfortunately not always the most helpful for the patient. The impulse is completely understandable (pain shared is pain halved), but the result is often the opposite of what we intend - such stories make the patient feel alienated, generalized, and not understood - so please, if you can, check those impulses.

We all want to believe in something right now and achieve understanding, but the best we can do for T is to be silently aware that her philosophy and way of handling the unimaginable will be unique to her. However hard it is not to speak or offer advice, it’s absolutely crucial rather to listen to how she’s making sense of this (or not) if she chooses to share and to affirm her choices regarding her path through this. We can walk with her, but no one can carry her.

Also remember, T may need us to be her sounding board, but she doesn’t need to be ours. We are all understandably upset, and need to process our feelings. Let your other friends support you in that way - don't add to T's burden.

If you've already posted/commented/buzzed something like this, don’t worry too much, and don’t bring it up by apologizing (however much you might want to). These days will be a blur for T, so just let it pass.

7. DO help make her laugh when her mood and the timing is appropriate.

8. Support each other. Hold together as a community and love her.
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machshefa

January 2012

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