I posted in December about my mother’s brain cancer. She has had 16 radiation treatments. She fell (again) last week and has been in the rehab hospital. (She sent my sister home while she’s in hospital, so that my sister can be with her family. Sis is going back to Phoenix soon.)
My sister says that mom is listing to port again. That’s how this all started, and it turned out to be fluid in the brain. Apparently, the fluid was caused by the tumours. I don’t know if there have been any tests to see if the radiation worked, but the loss of balance concerns me. I think mom might have more fluid in her brain, which makes me think the tumours are still there.
When mom found out she had brain cancer, she was convinced she only had weeks to live. The doctors said she had ‘months or years’, depending on how she responded to treatment.
I hate to ask this, but I need to know what to expect. I need to prepare myself for the inevitable. No, I can’t ask. But the question is implicit. 
Johnny, I’m so sorry. I have nothing to offer but my best wishes to you and your family.
I hope you get the answers you need, but I just wanted to let you know you and your family are in my thoughts.
Johnny, Without knowing the type of tumor, I can only give you a general overview.
First, the radiation itself could cause some fluid to accumulate. Radiation is pretty hard on healthy tissue too, so ataxia, dizziness, blurred vision or other neurological symptoms may come and go for a while. Wait and see what the doctor says.
They may want to put in a permanent V-P shunt (ventricular to peritoneal) to provide continuous drainage.
As far as what to expect, If the radiation is successful in shrinking the tumor, she could actually get back to her normal, chipper self. <Remission> That is, obviously, the best case scenerio. How long it lasts depends on the type of tumor, the location, and the X factors present in each individual.
<Relapse> Symptoms will gradually or suddenly reappear. They may be similar to her original symptoms or they may be different. The determining factors are again, type and location. She may have metastases; abnormal cells can travel to other locations in the body and “seed” another organ. Most common are lung, bone and liver.
Subsequent remissions will be harder to induce, and be of shorter duration. In the case of metastasis, depending on the target organ, the treatment will bw different. If the tumor is an especially agressive type, they may opt to cease treatment and aim for comfort.
These things could happen in a few weeks to months. They may not happen for years, or in the very rare case, never reappear.
I hope this is answers your implied questions. If I’ve given you more than you can handle, I apologize. Usually, knowing is better than not knowing, but it has to be on your timetable.
My heart goes out to you. I know how difficult this time is. I also know you have to go through it to get beyond it, and unfortunately, we all go through it alone, even when surounded by our best support system.
Feel free to e-mail me if you have specific questions.
M
Johnny L.A., I’m so sorry. I lost my spouse to brain cancer a few years back. I didn’t see your previous thread so I just read it, but I’m not sure if it’s the same kind. It must be hell trying to do this from across the country.
I’d think that if your mom is showing symptoms again, she needs another MRI so that they can see what’s happening. If she’s having neurological deficits (my sweetie developed I’ve-forgotten-what but couldn’t track anything on the left), there may be some physicial/occupational therapy that will help (it did for us).
Check into the new and experimental programs (and keep checking!). We did surgery (twice) and radiation therapy that only slowed it down. Got into an experimental program at UCLA (special-delivery chemo to cross the blood/brain barrier) which seemed to be working tremendously well, but it took us almost a year to find the program - it had started up after our initial look at the new studies.
What will happen depends on the type of cancer and location of the tumors. You need to talk to the doctors. We were told to expect a slow decline (mental and physical), speeding up towards the end into unconciousness followed by death, but they said that tumors in other locations could cause a sudden death more like a stroke/heart attack. They gave us 15 months with treatment, 3 months without. We didn’t see any real problems (apart from some medication side-effects) until around 12-13 months. Lee was going strong at 16 months and the cancer was on the retreat; complications from the treatment caused a sudden pulmonary thromboembolism (one of those 5% risk things that are why they make you sign releases).
My cousin was told one-two years (much slower-growing type) and lived eight or nine with several surgeries & treatment. He developed the personality changes that are sometimes caused by neurological trauma/problems.
Every situation is different. Talk to the doctors about what to expect, and then wait to see what actually happens.
Help your mom take charge of her treatment and life - she has the right to decide what she does & doesn’t want to do. It can be difficult for some people; it seems like especially the older generation have trouble questioning “doctor’s orders” even when they’re very unhappy with what’s going on. Lee refused the chemo here that they tried to talk us into; we didn’t like the doctor, and the chemo had a very low success rate (read: might help slow the tumor down a bit) but all the usual chemo nightmares. It caused quite a ruckus in the local oncology community. Conversely, we were very happy with the experimental chemo and it had very few side-effects; the doses were much lower due to the on-point delivery. I don’t know what happened with that study or what’s available now. The important part is that your mom is confident in what’s being done and is taking part in her treatment, not just going along for the ride.
I don’t check my email very often (it’s spammed to the max), but I can open one if you want to talk. Let me know.
Update.
Mom’s still in hospital. She’s nauseated today, which she hasn’t been since the radiation treatments. She thinks it’s because they want to discharge her, and she’s not ready to go home. My sister took the house keys to San Diego when she went home. Nevertheless, a neighbour can get in and unlock the front door. But if mom falls again (likely) there won’t be anyone to help her. My sister is sick today. I hope she can get to Phoenix soon.
Mom said she’d signed up for hospice care. She said, ‘I have about two months.’ I thought she was talking about a waiting list, but then it occurred to me that she wasn’t.
I try to be upbeat when I talk to her. I tell her about my job search, my getting-rid-of-stuff, potential video projects, etc. I tell her I love her.
My mom died of lung cancer that metastized into her brain. Honestly, I don’t know which one got to her.
I’ll second what the others have said, but let me add that if she’s having seizures from the tumors, she needs to have someone with her 24/7. The seizures on their own aren’t dangerous, but falls and so on associated with them are. That’s where a hospice or home hospice care can help immensely,
It’s gonna be rough on you, especially with no job and the geographic separation. If you want, my e-mail is available in my profile. I hated watching my mom die, but I wouldn’t have missed it for the world, either.