Hi everyone, I have been lurking in this group for almost a year now and am finally posting. In the beginning looking at everyone's stories used to make me feel scared, so I was only reading them in spurts. I think I just hadn't really come to terms with what was going on with us. These days they bring me comfort even when they're heartbreaking. Today, after reading a moving and relatable post by 'Pete or Stan' about grief, I had a good cry and thought maybe I would share too. My partner was diagnosed with GBM back in April of 2022. He had a headache that lasted for a month but, as we are located in the US, kept putting off going to the doctor because the health insurance from his new job hadn't yet kicked in. When it finally got too bad to wait any longer, we went to the emergency room where they discovered a mass in his right frontal lobe. As I'm sure you all have experienced, everything has changed—all our priorities, conversations, our ability to relate with our friends, etc. The first craniotomy took place April 25, 2022, followed by the standard treatment of six weeks radiation and Temodar. We live in Oakland, CA so luckily were able to also enroll in a trial at UCSF for a drug called Enzostaurin. We were very lucky in that my partner Pete was healing well without many side effects. They told us that the good part about having the tumor in the frontal lobe is that you have two frontal lobes. If one goes out of commission, often the other one can step in and get the job done. However, in the days leading up to the February MRI, he was experiencing bouts with a bad taste and smell, followed by lightheadedness and nausea. Well, it turns out those were small seizures or "auras," and new tumor growth was discovered on the scan. He had a second craniotomy a few weeks later. While they were able to get "everything" in the surgery last time, this new growth was a little deeper and too near his motor functions for them to get more than 90-95% (no complaints! That amount of removal is still a miracle!). Unfortunately he is experiencing headaches again (for which he takes a steroid), and is still having breakthrough seizures though they are still auras and he has not yet lost consciousness during an episode, so chances are the growth is continuing. Next scan is April 21st. We've moved on from Temodar in favor of another chemo pill, and he no longer qualifies for the study so that is scrapped as well. Even though we've been together over ten years we plan to get married in May. There are so many swirling good and bad things going on all the time, it's just so hard to have to make room for all the feelings and the nuance of holding space for both, the fears and the hopes. Anyway, I just wanted to share and say that I'm here with all of you as well, and that it sucks! Sending all the love and support I can muster!
Hi Jen
a warm welcome to the group. Thanks for sharing. As Chris has already said, hearing others' stories always helps.
My husband's initial tumour was in Broca's Area of the brain. He did find the chemo tablets messed with his sense of taste while he was taking them. The vast majority of his symptoms have been cognitive since he was diagnosed in Sept 2020. But you're right, it sucks no matter where these tumours lurk.
Please remember that you can reach out here anytime It's a safe and supportive space and you're not alone. We've got you.
Sending you both a huge virtual hug and lots of love and light for your wedding day when it arrives.
love n hugs
Wee Me xx
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