r/braincancer 5d ago

Big time scanxiety

9 Upvotes

So for the last month i have been feeling terrible, well not myself and im scared i may have a new tumor.

I had my 6 monthly MRI today and my follow up for results is not for a week, can they let me leave if i did have a new tumor ? Or would they have told me ? Or got my oncologist to contact me ? Its been 5 hours since the scan and i haven’t heard anything which must be a good thing ?


r/braincancer 5d ago

Pons glioma - anyone relate?

2 Upvotes

If you have a brainstem glioma do you have heart rate and blood pressure issues? Feels like I’m on the constant verge of death whenever my heart rate is in the 100s and blood pressure is 91/59 or 94/53 😩 any advice?


r/braincancer 6d ago

[benign] Hi :). I'm 29F and have a solid pineal 11mm mass, and am 6 months into horrible symptoms. A neuro today told me "we do not care about pineal tumours" and belittled me for having an upcoming neurosurgery appointment. He said it wouldn't be causing me symptoms. Am I crazy?

11 Upvotes

Really need to type this out somewhere where people might understand. I feel really uneasy after this mornings appointment. I was going to post it on r/braintumor but saw that sub directed to this one, even if it's a benign growth, so thanks for being inclusive :D.

Background: August 2024 was told I had a pineal growth but they said it was an incidental finding and likely a cyst, low risk etc. I forgot about it. Then routine follow-up scan in January 2025 actually confirmed it's not a fluid filled cyst, but a solid tumour. Smooth and not cancerous looking.

Since October 2024 I have been having unexplained *awful* neurological symptoms and nervous system dysregulation. It's been almost 6 months of total crap. I get vision issues, derealisation, numb face, numb legs, numb arm, really bad nausea and dizziness, faintness, etc etc etc (list goes on and on). At first I ignored it, then thought it was a neck injury, then thought it was something else, and ignored the pineal growth as until January I thought it was only a fluid cyst. Only in January after the brain scan did it click for me that perhaps this brain lump might have something to do with it, so spoke to neuro at the hospital last week, who said the system had erroneously given me an 'urgent follow up' for 2026, and that he was glad I chased this as I should have been seen in January. So, now, I am seeing neurosurgeon tomorrow to discuss, as per his instructions.

I have obviously googled whether an 11mm solid pineal growth could be causing all of my symptoms, and honestly, it ticks off every single one of them. This weirdly comforted me, because finally I have a reason for the issues, and if you can be bothered to look at my Reddit history you'll see this account 6 months ago turned into a medical investigation quest -- just trying to make sense of wtf is happening with these symptoms.

This morning, I saw a neurologist (who I had booked as part of my existing investigation into these strange symptoms), who happens to work in the same clinic as my upcoming neurosurgeon. I have had a bunch of MRIs which he had access to, including brain scans showing the pineal mass. He was incredibly condescending, and refused to explore reasons for my symptoms, he refused migraines, refused anything I tried suggesting, and just kept saying 'I don't think you will ever be able to get to the bottom of your symptoms' (?! weird thing to say). He then looked on the system and saw I am seeing a neurosurgeon tomorrow, and said 'We don't care about pineal growths' and said he was '100% sure' it is not causing me any symptoms. He kept bringing up my neck and brain scans saying there is nothing wrong, except for the pineal growth. Then would say the pineal growth could not possibly be the problem. He didn't say this outright but his tone really suggested that he didn't believe the severity of my symptoms. I even offered to trigger the symptoms for him to watch me have an 'episode' (if I move my head around real fast or lay down, it often triggers) and he rejected that offer.

It left me feeling really confused, dismissed and belittled. It's made me want to cancel the neurosurgeon tomorrow, as if I'm a fraud, or that I've somehow misunderstood everything the initial (nice) neurologist I saw said. I'm simply following instructions to have a follow up about my pineal growth, and it feels important given my incremental symptom onset of neurological issues. Is this normal, to be dismissed like this? Is it really the case that there's 0% chance it is causing problems? I'm suffering greatly, and was anticipating that these appointments might shed some light on my symptoms, rather than treat me like a trouble patient. The longer I'm sick without explanation, the more of a 'trouble patient' I become, and I'm worried it's cornering me into not receiving the help I need. I feel so anxious for tomorrow and worry that my over defensiveness will backfire. I wish it didn't have to be a case of fighting to be listened to.

Please put me in my place if I am mistaken and a pineal solid mass of 11mm cannot be causing any of my problems. I think I just need a bit of a morale boost before tomorrow, I'm really frightened of being treated with such condescension again. If anyone has experience with this, would greatly appreciate it. Thanks so much for reading.


r/braincancer 6d ago

He's pushing me away

17 Upvotes

I posted recently about my partner's personality changes since his diagnosis in 2023. I really don't know where to begin on this because I am really hurting. He moved out three weeks ago and move back in with his family. He stayed with me last weekend and we were going to work through our relationship. But now he's gone back to being combative, doesn't know what he wants, and he's no longer in love with me. He officially broke up with me last night. Keep in mind, he and I are the same age; 47. He kept telling me that he isn't the same since his GBM diagnosis in 2023. He doesn't have normal thought processes like the rest of us. It's not me; it's him. He has been snapping a lot at his brother and his parents a lot more as of late. He won't seek therapy. Even though he has pushed me away, he still wants us to remain as friends. I'm fine with that.

I understand the frontal lobe of the brain is what controls your emotions. But his tumor was on the parietal lobe and they did a resection of his brain. I understand a piece of his brain is missing now; I get that. But I don't understand the personality changes and him pushing me away like this. Is it a side effect of his Keppra? He finished chemo and radiation a year ago. Is that just now affecting him? We may never know. But what I do know, is that he is no longer my person and he isn't the man I remember prior to GBM. In spite of everything, I still love him.


r/braincancer 6d ago

Make it make sense

11 Upvotes

A 2 weeks ago, my dad went to the ER concerned about tingling on the left side of his body. What he thought was a stroke turned out to be 3 tumors described as "high grade Lesions" on his right temporal lobe. Two were about 2cm x 2cm and one was .8cm. The little one and a larger one pushed together and caused a brain bleed, so they operated right away and took out most of the 2cm causing pressure. One they left due to how deep it is in the temporal lobe and one they left because the doctor wanted to cut conservatively.

The next step is a round of chemo and radiation and a follow up to see how they impacted the tumor (starting next week). He is seeing a Doctor at Duke, which is awesome. We are waiting for pathology.

Dad is recovering SUPER well from the surgery. He never stopped working and still is going on his long walks. In hindsight, maybe there was a TINY difference in his memory and hearing leading up to this, but otherwise, there were no symptoms. and I may be making up any changes I "noticed."

I guess I am in the denial stage of grief- it make NO SENSE to me how you can be totally fine, then to hear you have 12 months- 5 years. Again, no one is certain of what the outcome will be. but I am wondering if anyone else had a similar experience? Am I crazy to have hope, or am I in denial? The cards are all stacked in his favor. This is just such a blindside. I have learned so much from this group and for that I am very grateful


r/braincancer 6d ago

Waiting for the pathology test results

7 Upvotes

I had my surgery to remove my optic nerve tumor on the 14th, I'm still waiting for the pathology test results so we can know what grade glioma it was and how to procede with what is left in my brain since they couldn't remove it all. Waiting for the pathology has been so far the worst part of this whole thing, I'm anxious and scared and I'm constantly checking my emails to see if they sent the results. How did you deal with this whole part of the process? How do I deal with the stress of this while recovering from surgery?


r/braincancer 6d ago

Dexamethasone 10mg

7 Upvotes

Hi all! I’m here to discuss my experience with this steroid.

Very brief overview of me:

Diagnosis: Pilocytic Astrocytoma, grade 1, on the thalamus Treatment: biopsy, 3 cyst drainage surgeries, 30 rounds cyberknife radiation

Why I’m taking the steroids: swelling on right side due to radiation treatment. I have significant left sided numbness with mild loss of strength and coordination. This started out of no where one evening - I was cooking dinner and my left side suddenly felt like it fell asleep. The numbness affects my face, arm, hand, leg, and foot.

The steroids: I’ve been taking varying amounts daily over the last month; the most my doctor has had me take in one day is 40mg (2 10mg tablets in the morning, 2 in the evening). Right now, I’m taking 20mg daily (one morning, one evening).

My side effects have been mild, but extremely annoying.

Night sweats, insomnia, heartburn, gas, increased appetite

All of this goes to say my numbness on my left side has not gone any better if anything it’s gotten worse over time. The weakness is affecting my workouts, which is really frustrating.

Wondering if anybody has a similar experience or symptoms with taking the steroid.


r/braincancer 6d ago

My dad just got diagnosed with a brain tumor. Just wanna cope

25 Upvotes

Hello I'm new. (We are from Spain, so things work different) My dad is 58, and he was doing well until a couple of weeks before apparently. My mom saw him walk strange, he was having a lot of headaches, he started forgetting about things a lot more. He got admited into the hospital yesterday bc my mom insisted on getting him checked. They found a big mass in his brain. I cannot believe this is happening. I'm getting married this autumn and I'm afraid he will not be able to walk me to the altar, or even see his grandchilds. I'm really worried for my mom, my dad is her whole life. This is horrible. I cannot believe this. I'm in shock. I cannot stop crying. I'm able to be a silly girl only when I'm with him to cheer him up, but the second i step outside his room tears start flowing. I cannot do this. No one deserves this.

Edit (April 1st): It's not cancer!!!! The mass is located somewhere that it's easy to access and won't have any bad side effects. He's going to get the surgery this Friday and home on Monday. I'm currently so so happy. Thank you everyone for your support, your messages and all your experience 💕💕 it really helped me these days.


r/braincancer 7d ago

Any good supplements to reduce chance of recurrence of brain cancer?

18 Upvotes

I am currently receiving treatments for an oligodendroglioma brain tumor. Since my diagnosis last July, I am exercising a lot more and eating better cutting out most sugars. Does anybody who has/had brain cancer recommend any supplements that might help delay recurrence or lessen my chances of having a recurrence? After treatment I wanted to add something in addition to my healthier diet. Any suggestions?


r/braincancer 7d ago

Our Daughter Choose Her Wedding Venue Today

25 Upvotes

For May of 2026.

I need to preface this by saying I completely supported her choosing next year, even after learning my less than optimistic prognosis (given APPROX 6m-year at the end of February). She asked me before looking how I felt about the date--she's 28 and knows the deal. She's home from AZ (us in MD) on FMLA to spend some quality time with me before things go further south. I told her DO NOT CHANGE YOUR PLANS FOR ME. I will be there. In body or in spirit, I will be there.

So why don't I feel excited right now? I'm actually not upset. Just blah. Like, OK. I'll act excited. But reality is, IF I'm around, I have no clue what physical condition I could be in at that point. I love her so much, and want her to have the wedding of her dreams. And so she shall!

I do still have a couple big treatment decisions to make in the next couple months. My Medical and Palliative Dr's both are of the QOL over extension is what my goal should be. However, if I can do something to get me to that wedding in decent shape, I'll do it.

Will keep you all posted. Best to everyone here.


r/braincancer 7d ago

Urgent: Need help accessing ONC201 for 9-year-old with H3K27M DMG

12 Upvotes

Hi everyone,

Our 9-year-old has been diagnosed with Diffuse Midline Glioma (H3 K27-altered)—a fast-growing, inoperable tumor affecting both the brain and spine. We’ve been advised that ONC201 may be a potential option due to the H3K27M mutation.

We’re based in India, and while we’re currently under good care, we don’t know how to access ONC201 here, and local oncologists are not sure.

I’m hoping someone here can guide me or connect me to: 1. Clinical trial coordinators offering ONC201 (especially international compassionate use) 2. Families who’ve accessed it from outside the U.S. 3. Any physicians, advocacy groups, or nonprofit organizations that could help us navigate access

Thank you for reading, and thank you in advance for any help.


r/braincancer 7d ago

I want a straight awnser

22 Upvotes

I hate this so much. When I talked to my neuro the only answer I got was that my tumour is unpredictable like I may not expirence issues for a few years. For context in 25 years old with a low-grade glioma in my brain stem. As far as I have been told it’s not operable. Furthermore, my MRI report indicated it may be diffuse extending up towards my thalamus. I just want to know if this shit will kill me young. Mainly so I can mentally prepare and make sure I spend time with family and friends over the next few years.


r/braincancer 8d ago

Optic nerve glioma

7 Upvotes

I'm still waiting for the pathology test results, but from the surgery my doctor told me it's a optic nerve glioma, we just don't know what grade yet. Any of you have any experience with this type of tumor? I've been told it's mostly pediatric, I'm 22 so I had it for a while before we discovered it


r/braincancer 8d ago

ICU delirium

11 Upvotes

Does anyone else have experience with ICU delerium? I feel so bad for what my nurses and doctors had to deal with. I was also on a very high dose of Keppra which I have heard things about.

It makes me nervous about any future surgeries or hospital stays I may have to deal with. I felt as if I left the hospital with PTSD and I did not even have a terrible diagnosis.


r/braincancer 8d ago

my brother has dipg

22 Upvotes

Hello everyone. My 7yo brother got diagnosed with DIPG a few days ago, he went to the doctor for an eye checkup because his eyes were kind of crossing and after an MRI scan, we found out he had DIPG. My parents didn’t really tell me much details about his specific case but from what I gathered by searching online, it’s an inoperable terminal brain cancer and most patients survive for less than a year after diagnosis. He’s supposed to start radiation therapy in a few days and that seems like a really tiring process so I was wondering, what can I do to make it easier for him? And should he make any dietary/lifestyle changes or does it not matter at this point? I’m a junior in high school with some really important exams coming up soon but it’s really hard for me to focus so I need some advice on how to get back on track academically without wasting time I could be spending with my brother.


r/braincancer 8d ago

Voranigo

8 Upvotes

Holy shit is expensive. Somehow my insurance covers it. One month is more than we make in a year! I would really appreciate it if anyone on it could relate there experience.


r/braincancer 9d ago

She's Gone.

64 Upvotes

My mother was diagnosed with Breast cancer in October, 2020. After being cancer free for 1 year, the Cancer came back to her lungs and brain in June, 2022. I've been a member of this group for long, taking inspiration from others, learning from their experiences.

However, in February 2025, she developed mets in her leptomeninges and after much suffering, she passed away on 16th March.

She fought valianty for more 4.5 years, with hope and positive mindset and lived her life to the fullest, even after having poor prognosis. I loved her very much, more than I love everyone else altogether. She loved me even more. She was my inspiration and centre of my world. I can't even express what she meant to me in words.

I just hope she's in a better place and I get to hug her soon. Thankyou so much to everyone here.

I wish everyone best of wishes against this pathetic disease.


r/braincancer 8d ago

Gamma Knife

2 Upvotes

My close friend was diagnosed with lung cancer and it’s apparently spread to his spine and brain. I’ve had a few conversations with his family, but it’s still unclear whether his lung cancer is actually Stage 4 or if the doctors found more cancer when operating that it made them go, “things looked worse than we thought. It was actually closer to Stage 4” when telling the family. I guess that doesn’t even make a difference. I’m probably in denial. “Stage 4” was said at one point and I don’t think doctors just throw those words around.

I never could have seen this coming. He’s 78 years old but in great physical shape. He doesn’t smoke, no previous health issues I’m aware of, he was so active (running half marathons last year!!), he eats healthy, etc.

He underwent a Gamma Knife procedure earlier this week. I saw him today and his spirits were surprisingly high. We even went on a walk outside with his walker.

I guess my question is: Can you beat something this? I know the answer to that question is obviously: “I don’t know. I’m not his doctor nor do I have a crystal ball.” But does anyone have any success stories that can give me some hope? What is the life expectancy on something like this? Is he going to get a lot worse? He seemed so normal and good today, but I know I can’t get my hopes up. This is going to be such a long road. I guess I’m just looking for a better understanding of what that road looks like.

Thanks for reading. I’m sorry to all of you. If you’re in this subreddit, it must mean you’re going through something. And I really am so sorry.


r/braincancer 9d ago

Overwhelmed

18 Upvotes

Just need support from people in it or a crash course. My fiance has grade 2 astrocytoma idh mutant. Been through surgery, chemo/radiation. We’ve somewhat been coasting since 2022. He’s been on Vorasidenib for 4 months. He went for his routine MRI on Wednesday (last one was October) and it took longer than normal. The tech came out and told me we needed to go right to emerg and talk to neurosurgery. We waited in emerg and the attending told us there were new lesions, selling and midline shift. Neurosurgery got called into OR so they discharged us with script for Dex. Has urgent follow with onc and they think it’s radiation necrosis and want to put him on avastin. Can someone who had experience with necrosis give me a crash course on your experience and what to expect. His MRI report seems so bad and says disease progression”disease progression” did anyone else get flagged for that and treated necrosis and it still end up being progression. It’s been a really hard 48 hours and I spiralled a bit. I feel like every MRI I’m waiting for the other shoe to drop and this time it’s like everyone’s worst nightmare to get called to emerg after an MRI.

Thanks for any insight, sorry for any typos or poor grammar. Just in the thick of it.


r/braincancer 9d ago

My last post

54 Upvotes

Today it happened. My sweet friend lost her battle. 6 hours ago…. I’m so proud of her. I’m happy she didn’t suffer longer. She was brave and honest about her feelings. Not everyone gets the chance to say their goodbyes. Today felt like a flood of sadness. For her children. Her husband. Her friends. I lost my own dad at the same age. 37! Now my “daughter” who was orphaned herself as a teenager. What a difficult last year she had. I will honor her forever. I pray for all of you on this difficult journey. Fuck You Brain Cancer! I will never forgive you for taking her from us! 💔🥺❤️‍🩹


r/braincancer 9d ago

Relationship woes

9 Upvotes

This is more of a rant than anything. Diagnosed last year, still going through treatment, and my interpersonal relationships have gotten so weird. Everyone wants to help but no one knows how other than coming to appointments with me (which I enjoy!) and it is so overwhelming to deal with. Sometimes, people get upset if I don't make up some reason to need their help, as if they are the ones going through this and not me. I can feel myself becoming more withdrawn from others because of how exhausting it is to balance their emotions and needs while I'm actively going through cancer treatment... I'm about to be losing friends and even family at a rapid rate, because I just can't deal with them. I'd rather be alone and peacefully tending my treatments than juggling the stressors of others on top of my own. Stress is one of my seizure triggers, people are literally making me more sick in their attempts to support... Everything about this disease is so fucked


r/braincancer 9d ago

Healing from craniotomy

5 Upvotes

This will probably be kind of long but I’ve been reading a lot of posts and am finding hearing your stories and experiences really helpful in processing what we just went through. I wanted to share ours and maybe hear from some of you who are in a similar place because it’s been really hard and isolating.

My (28F) husband (27) was having small headaches for 9 months to a year. Pretty minor and ibuprofen handled them just fine. He started feeling some pressure behind his eyes and we assumed he needed glasses or maybe to see a chiropractor.

His optometrist diagnosed him with papilidema (optic nerve swelling) and suggested we see a neurologist. The doctor we saw was amazing - she said if he was an overweight woman she’d almost certainly say it was a weight loss/blood pressure issue. But with him being a young, healthy man it was a little odd so she ordered an MRI.

We live in a small town and it took weeks to finally get in to the clinic for the scan. It coincidentally was scheduled for his birthday and we took the appointment just wanting to get it over with. We assumed the results would come in early the next week.

Instead we got an urgent call from the neurologist just 30 mins after the MRI. She said we needed to leave immediately for the city 3 hours away to the larger hospital because he had a brain mass and urgent, extreme fluid/pressure in his brain.

We had our stuff packed for a little getaway so we loaded it up in the car and headed for the hospital instead of the birthday AirBNB.

It took awhile to finally get connected with the right team and settled in the hospital but we fortunately ended up with one of the best neurosurgeons in the country. It felt like a gift from God because he is often someone you have to request and we just happened to be with him. He has been an angel for our family.

There were a lot of “good” things about the tumor. It ended up being what they suspected, a central neurocytoma. An extremely rare but benign tumor found in young adults. And he could have had it for years. He’s right-handed and it was in the central/right side of his brain, so that means recovery would be easier and they could access it easier too.

Because of the insane swelling and fluid, they said really at any moment the pressure could have caused his brain stem to essentially collapse into his spine and could have been fatal. It’s insane to think about and still very scary. Things could have gone very differently.

A few days later we went from “maybe you need glasses” to saying goodbye as they wheeled him back for a craniotomy. Oh and also, I was then 13 weeks pregnant, still puking from morning sickness.

My family is not in my life due to me needing to go no contact, so it was very lonely and scary. Fortunately his parents came to be with me and I don’t know what I would have done without their support.

The surgery went well - they believe they got it all out, or essentially all of it. It was shorter than expected and the pathology confirmed it to be benign. All things I do not take for granted.

In 6 months we have a follow up MRI to see if there is any tiny part left. Our neurosurgeon said it won’t ever grow back once it’s fully removed, but if any remains, that could grow larger. But if any is left, he has a plan for a much less invasive removal since it would be so little. Plus we wouldn’t be dealing with the extreme swelling and fluid, so overall it will be a much easier procedure and recovery.

He said my husband will go on to live a completely normal life and those words meant more to me than I can say.

I’m so grateful for how things turned out for us but also was definitely not prepared for what recovery has been like (is there really a way to be prepared?)

This is the area I’d love to hear from other people. I know recovery is different for everyone but it’s been so helpful reading stories of those who have similar experiences, especially people further down the line.

Our hospital stay was longer and more challenging than expected. He took days to wake back up after the procedure. At first, it was normal from the anesthesia, but then I could tell the ICU nurses and neurosurgeon team were getting a little concerned.

You had to violently shake him awake and he could only mumble a few confused phrases for days. I was so terrified that he wouldn’t ever really come back. He very slowly woke up more but was extremely disoriented.

One morning he had a seizure (the first one he’s ever had) but we weren’t sure if it was a seizure or stroke at first. It was terrifying to see and I didn’t know what was happening. The team urgently wheeled him away to get a CT to check the fluid levels in his brain (he had a drain for about a week after in his brain).

So I was left in the ICU room alone not knowing what the heck just happened. Then he was monitored for more seizures for a couple days. He didn’t have any, so they removed the equipment and he had one less than 24 hours after that, so we still didn’t get to see the brain activity.

As I’m sure you all know in this position, there are such high highs and low lows in recovery. He’d have a decent day making a joke or two and seeming happy. Then the next day he had such a severe headache that he was writhing and wailing in bed (I have never seen him in that state before).

It was so tiring leaving my hotel room every morning not knowing if it was going to be a decent or horrifying day. I was so lonely and also just trying to eat and do a decent job caring for the baby and myself somewhat.

He had a total of 3 seizures, and was also not able to use the restroom at all himself. He passed out multiple times when the PT team tried to stand him up and was suffering miserably from back pain of lying in the hospital bed so long.

Those were truly the worst days of my life seeing him like that. He is the kindest, softest, most loving person who has never raised his voice at me in our 5 years together. But the steroids made him so sharp, mostly with me, and it was so painful. Of course he didn’t mean to be that way and if anyone ever deserved to be mean, it was him in that moment! But it was still hard for me and it almost felt like a temporary grief of my best friend.

I was the first in the visitors line every morning and the last to leave when they forced me out every night at 9pm. 13 hours a day just waiting and feeling helpless, then back to my hotel room trying not to puke or drive the nurses crazy calling to check on him.

Finally he started improving. We had been looking at rehab for a couple weeks but they felt ok sending him home since I could be with him.

Coming home was a huge high followed by some rough days which we still find ourselves in. We’ve been home about 2 weeks and it’s been a little over a month since the procedure.

We’ve been to the ER in our town twice after coming home (once for a severe headache more than the expected headaches and once for a suspected blood clot which thankfully was a muscle thing).

Every little symptom is terrifying because it could either be nothing or life threatening. Trying to discern when to be concerned or when to just let things settle has been extremely stressful.

The first few days back I was essentially a round the clock nurse filling their role since we were on our own. He’s gotten more independent which has been regulating for us both.

He was weaned off the steroid which has improved things a lot. He’s still on a pretty high dose of anti-seizure meds (4k Keppra a day and 2k Vimpat) but they’ve stopped the seizures and he’ll be on then until the 6-month MRI check up to make sure his brain has time to heal.

He won’t be able to drive for that time, which we can adapt to. His short term memory is fuzzy and some days his headaches are rough. Other days he feels more like himself.

The biggest things are anxiety and an extreme restlessness at night time. He is the most peaceful and grounded person I’ve met, so it’s been really sad seeing him in emotional distress, but it makes sense of course.

He has been taking melatonin at night which has helped a bit. I know recovery takes time and it’s still early for us. I know we have a lot of best case scenarios and am so grateful.

But I also want to give myself space to grieve and process and experience the pain and trauma we’ve just been through. It’s been an incredibly hard year. Among other challenging things, we had a stillborn son last June at 36 weeks.

It was a completely unexpected loss as I’m healthy and the pregnancy was normal and healthy. We’re still mourning our boy and then this all happened and we found ourselves in the hospital again.

We are hopeful and optimistic people while also valuing the importance of being real about what we’ve just gone through. I almost feel a little guilty posting this knowing so many people have it worse but I’m also trying to be compassionate for our story and the ways it’s been traumatic for us.

The stories of recovery especially have been helpful for me as it gives me a grid of what to maybe expect or just the company of knowing others are feeling how we feel.

I already treasured our life together but even more, every day, I marvel at the fragility of life and how special it is to be alive and together. Some days that reality brings joy and other days it brings terror.

I’m grateful to this community because it’s answered a lot of my questions and helped me not feel so alone. And I’m grateful to those who read through all this and made it to the end. 🤍


r/braincancer 9d ago

Upcoming craniotomy

9 Upvotes

I have a craniotomy coming up in a few weeks and I wanted to see what you all recommend to make post surgery more comfortable? What is something you had, or wished you had, post surgery? Looking back, is there anything you would have done differently?

For example, when I had my shoulder replaced, a specific pillow and a device that circulated ice water around my shoulder made the post op recovery much better.


r/braincancer 10d ago

My brain tattooed 🧠🌻🌸🍄🍄‍🟫

Post image
77 Upvotes

I wanted a reminder of my fight + battle against brain cancer. My husband and I came up with this and my tattoo artist freaking crushed it!

My tattoo is my actual MRI picture of my brain and its new missing chunk, but with prettier wild growth coming from it now. 😆

For me, it represents that beauty comes after death. I had a part of my brain and kind of my ‘old self’ die off that day I had my craniotomy and with that, I blossomed a whole new outlook, love + respect for life. I feel like as bad as it is, it’s shaping me into “who I am supposed to be”. I’m a believer that you’re never given anything you can’t handle and I’m one helluva fighter.

I was inspired to share this from another fellow warrior sharing their representation of their fight. I know we’re not in the most awesome situation having brain cancer, but keeping fighting. You are worthy. You are loved.

Forever rooting for you all!!! Cheers fellow fighters!!!


r/braincancer 9d ago

Postop misery

7 Upvotes

1 week postop 2nd craniotomy for pilocystic astrocytoma. I am so much more uncomfortable this time around. I have double vision, haven’t popped in a week, still nauseous, dizzy and throwing up. Hot and in pain. I’m so miserable. Anything you did after surgery for relief? My postop is next week. My nurse knows my symptoms and is trying to help but that magnesium citrate stuff was awful and didn’t help :(