u/mswoodie

I had my MRI of my brain last week. I have distant mets to brain and I get scanned every 3 months. Usually the report is released to MyChart a day or two before my onc appointment. I’ve been checking repeatedly since Friday and nothing has been released.

I have my onc appointment in 2 hours. Still no imaging report. I’m so anxious that I feel queasy. I’d take an Ativan but I have to drive to the appointment.

I’m mostly nervous because I’ve been averaging a new brain tumour each year for the past 3 years. And I’m about due.

I have to get up and ready for my appointment but I feel like my body is lead and too heavy to get up. I need help with managing this anxiety! Any tips?

Edit: I managed to get up and out and am now sitting in the waiting room. Of course I forgot to put proper shoes on (earring my house shoes), don’t have my credit card to pay for parking, and there were no accessible spots left in the lot, so I had to walk super far. But I have a pocket full of change for parking and I’ve made it to the waiting room. The hard part is done.

I have metastatic urothelial carcinoma with distant metastasis to my brain. This is extraordinarily rare disease progression so there is no real treatment protocol.

I’ve had 3 tumours in my brain identified and treated approximately 1 year apart. The first two were located between my right frontal and parietal lobes and were removed surgically then treated with radiation(November 2023, December 2024). The third was very small, located left temporal and was treated with gamma blade radiation (October 2025). My last MRI, 3 months ago, was clear (no tumours, swelling, necrosis). I have my next MRI later this week.

I am experiencing very low energy and stamina, moodiness bordering on bitchiness, headaches, jaw pain, lethargy. I have a bunch of other medical concerns that are being followed by various doctors. I am and do seek medical advice and treatment on the regular, but I’m curious about anecdotal information about how long craniotomy and radiation effects last.

What have you experienced? How long did you feel less than ideal? Aside from brain injury from tumour removal, what physical, mental or emotional effects have stayed with you? For how long?

My neurologist and radiation oncologist tend to say “everyone is different” and try to treat me symptomatically, but I’m becoming overwhelmed with all the meds, their side effects and juggling their timing and their relationship with each other. I’m worried about complaining of how I’m feeling and having them prescribe more meds that adds to what I’m already juggling.

Any help? Any wisdom?

I’m working on the linked pattern and I’m wonder if I should add short rows to the back of the neck. And if I should do short rows, how would that affect the shoulder increases? Can anyone point me to resources that might help?

Or should I just follow the pattern to the letter?

Vent incoming.

I’ve been involved with this sub for a while; pretty much since I was diagnosed four years ago, and I read nearly every post. If I can help with my experiences I contribute. I hope I’ve been able to lighten other people’s load at least a little.

One theme I see often is the frustration we experience with not being able to do what we used to be able to do. This frustration is completely valid. It hurts to know we were once able to work hard and play hard and get shit done but now we are exhausted, in pain and too sick to meet those standards. It destabilizes our own view of our identity and value. It makes sense for us to be frustrated.

But we need to recognize our value is deeper than what we do. We are still ourselves - just differently expressed. We do what we can when we can. We are not lazy or weak or failures.

Sometimes we believe our loved ones believe we are less than we were, but mostly it’s US that think this. And our own thinking is the one thing we DO have control over. It takes effort (and sometimes therapeutic support) to pivot our thoughts from “I suck” to “I’m still awesome, just sick right now”, but it’s worth the effort.

I’ve battled with internal dialogue that I’m lazy or I’m being dramatic or I’m not *that* sick and it always ends with me so down that I can’t get out of bed. But when I apply a different lens I can see the flaw in my thinking. I have never in my healthy life been lazy. I have always been a person who tries my very best. I’ve always been the one to achieve goals, even over-achieving! So why and how would I suddenly become lazy?

Maybe it’s because I’m sick. I’m not well enough to do what I used to do. But it’s not because of some flaw in my character. It’s because I have an insidious disease quietly consuming my body. If this was happening to literally anyone else, I’d tell them to be gentle and kind and patient with themselves. So why don’t we apply that same sentiment to ourselves?

Some posts I’ve seen mention loved ones who are less than understanding. They judge you for not being as able as you used to be. But what gives them the right to judge you at all? Would you accept that from them if you were well? Would you judge them if they were sick?

No one knows what you’re going through the way you know. No one is entitled to determine how you feel or how you express how you feel. If others are judging you, they’re not loving you.

I see a lot of advice on this sub to advocate for yourself with your medical team, which is good! But we also need to advocate for ourselves with our friends and families. And we need to advocate for ourselves WITH ourselves.

Be kind to you. And require kindness from others. We have enough toxicity inside our bodies. We don’t need any more in our hearts and minds.