Medical
This is my story dealing, first hand, with the medical industry and a cancer center. I was not at all impressed with any aspect of it. I will share aspects of my husbands cancer story...he had glioblastoma, an aggressive cancer of the glial cells in the brain I kept a timeline of everything, my experiences as a caregiver for 19 months, the visits, drugs given, PT, because I feel that one of the reasons I'm still around is because others need to hear about it, maybe do things differently, ask for even more help than I did.
The progression of GBM (glioblastoma)-watching someone die that you love.
In the end, he did not survive, and I get to tell my story.
The grieving Process continues for the rest of my life. Grief links and support down at the bottom of this page.
More at w2f.fit (coming soon)
Lobby of Jacobs at UCSD where he had his surgery where they "said" they got 100% of the tumor out. News for ya.. Ya didn't, not when it's related to an astrocyte, which spreads like a web. Call it like it is.
Menu at one of the Skilled Nursing Facilities he was at. the trend is garbage food that has no nutritional value, and just helps the cancer along.
My Experience With Brain Cancer, Glioblastoma (Gbm)
There is a pdf called rwTimeline (below) This was the storyline of a brain cancer patient (my husband) who succumbed to it 17 months after diagnosis.
preface: Glioblastoma, GBM, is a terminal brain cancer that stems from out of control astrocycytes that originate from the glial cells.. It’s aggressive and usually kills their host in less than 2 years.
I knew NOTHING ABOUT BRAIN CANCER. I had to learn by the internet, because neither cancer center bothered to tell me much about it other than toss a book at me and go, “here are support services” (you’re on your own (a common trend in my website)). Pretty shitty when you have 3 things going on at the same time, and now have to run a household, because you’re husband can’t anymore.
I don’t think in this thing called life, we are necessarily looking at a portion of it involving brain cancer. We expect that our loved ones will be with us into our old age.. Just look at my parents who are in their mid-80s and still are going pretty good.
Reed & I met in 1995, married in 2021. Lived together since 2010.
Something's not right........ 22.05.27
22.05.20: WHEN I STARTED TO THINK THERE WAS SOMETHING WRONG.
We had gone up to Sacramento a week before to visit family (mine, his parents had passed away about 10 years previous). There was a wedding of one of my nephews. We arrived the night before, and then played tourist for a day or two after. We took in the zoo. He seemed, “slightly off” during that trip, but was mostly functional.
22.05.27 I was getting ready to do a charity ride from SF to LA on the first week of june. This was my 3rd time doing it. I had everything planned out… visit family (I was just there last week), migrate to Oakland, to stay with friends there, and then to the cow palace where the ride started. I would arrive in LA 7 days later. Was going to catch up with old friends and meet up with many riders I trailed with during the season. Reed drove me to the airport that morning, but his driving was erratic. During the drive, I asked him if he was ok, as it was the first time I felt nervous about his driving. I almost determined that we were going back home to get him looked at. He made an excuse about the cars alignment (we had our own cars) I let it go, but in the back of my mind, I had this pit in my stomach that said, “I’m not going to be doing this ride, this year, I will be coming home, because I’m 80% sure there’s something wrong with him.”
Usually when I travel, I check in when I get to my destination… but the strange thing about this is that he didn’t answer his phone. I kept calling and calling and calling, never getting him to pick up. I ended up getting my neighbors involved to check in on him. They reported that he was laying in bed, tired, and he motioned them off. (I had given a key to them, as we are a pretty strong community), He just sounded really tired (this was something that he had ongoing issues with, as he likes to take “crashes” for a couple of hours in the afternoon. So, again, I dropped it, as he assured them that he would “come back to life” Checked again a few hours later, police wellness check didn’t result in anything, so had them check in again, that morning, still the same issue, cept they had found a mess in the back, and the back door left open. (some of this is cloudy now) That afternoon, after migrating to a hotel, I decided to book a flight back home, because I didn’t like what was going on and that he wasn’t picking up his phone. I arrived at 930 with a nurse friend of min.. The hall light was on, and Reed was laying in bed, unable to move. My friend had noticed he had lost all use of his left side…. We got him in the shower, and called 911 Off to the ER he went at midnight. My friend thought he had had a stroke. It was worse. After 3 hours, I found out he had a brain tumor….. the timeline begins from there…..
This page will be updated when I think of other stuff that might be useful, so that you, the future caregiver of a brain cancer patient, know what to expect and that your life will be turned upside down in an instant.
SUPPORT REFERENCES
I can say with high confidence, that you will have to do the legwork to learn about this and other cancers that your loved one is strickened with, because the Medical Industry doesn't do much of anything in the way of support for you. You, as a caregiver, are on your own, as the case worker at the second cancer "team" tossed a reference book at me. Story coming soon.
- I learned more here, than I ever got from the first Oncologist (this one at Grossmont Sharp was a real peach) , and the second Neuro-Oncologist, the radiation specialist, the hospital staff, rehab centers, and skilled nursing facilities. None of them offered much support outside of reference books. Expect little and hope you have support from loving friends, neighbors, or good organizations, like Jewish Family Services.
I needed ANSWERS from other caregivers, not doctors giving me lip service.
FACEBOOK:
* gbm ( or any type Brain Cancer) Caregivers Support Group ,
* glioblastoma-gbm survivors to thrivers caregivers only support group
- (there's another group if you got the tumor in your head, just take away the words starting with "caregivers"
Untangled app. (5/month fee)
Grief.com
Local cancer support group, though, I found the support lacking, little empathy. (my experience--- your experience might vary) I went to a few meetings, but with my schedule and the fact that everything got dropped in my lap, in addition to caregiving, I didn't have time to go and sit in on support meetings.
I'm in San Diego, so it was, sdbtf.com---
there's also the National Brain Tumor Society, which has monthly support zoom meetings (though I couldn't seem to find the link for the last one, and ,missed it)