I hate brain cancer

Summary

Éireann shares a deeply emotional update about her ongoing battle with brain cancer, reflecting on a difficult oncologist appointment. She discusses the harsh realities of treatment, including the cognitive effects of anti-seizure medication, and being told she has about 11 years left to live. While processing this news, Éireann highlights the importance of cherishing loved ones and creating positive memories. She urges viewers to appreciate life and loved ones before facing hardship. Despite the heavy topic, Éireann remains grateful for the support of her partner, family, and friends.

Takeaways

• 😔 The speaker is sharing a deeply personal and emotional update, advising anyone in a similar situation not to watch the video as it may be upsetting.
• 🩺 The speaker recently had an oncologist appointment where they discussed treatment options for brain cancer, including chemo, radiation, and BFF Inhibitors. The available options have been significantly reduced, leaving only one viable choice.
• 🧠 The oncologist informed the speaker that undergoing chemo and radiation would take up about a year of their life, a timeline that was unexpected.
• ❌ The speaker learned that they would never qualify for clinical trials due to the unspecified type of their brain tumor, which was a difficult revelation.
• ⏳ The speaker was told they have approximately 11 years left to live, which was shocking and hard to process, especially hearing it explicitly for the first time.
• 📉 The speaker struggles with cognitive decline, exacerbated by anti-seizure medication, and was disappointed to learn they would never come off these meds.
• 💔 The speaker has been processing the reality of their situation, which includes declining brain function, the inevitability of brain damage, and the emotional toll on themselves and their family.
• 🪦 The speaker reflected on the devastating impact of brain cancer, including its high mortality rate among young people and the lack of significant research funding compared to other cancers.
• 🌈 Despite the challenges, the speaker is grateful for their partner, family, and friends who support them, help create joyful moments, and provide a sense of normalcy.
• 🙏 The speaker urges viewers to appreciate their loved ones, cherish everyday moments, and avoid taking life for granted, emphasizing the importance of making memories while you can.

Q & A

What is the main topic of the video?

The video is an emotional update from Éireann about her ongoing battle with brain cancer, her latest oncologist appointment, and the treatment options available to her.

Why does Éireann discourage certain people from watching the video?

Éireann advises people who are in a similar situation as her to avoid watching the video because it might upset them without offering anything helpful or positive.

What were the two treatment options Éireann was initially offered in Canada?

In Canada, Éireann was offered two options: 1) chemotherapy and radiation, and 2) BFF inhibitor medication, which could slow down the progression of her brain cancer due to a BFF mutation.

How did Éireann react to the oncologist's recommendation in Ireland regarding the BFF inhibitors?

Éireann was upset when the oncologist in Ireland advised against using BFF inhibitors, stating that they could actually speed up the progression of cancer in some cases.

What impact did Éireann learn the chemotherapy and radiation treatment would have on her?

Éireann was told that the chemotherapy and radiation treatment would take up a full year of her life and cause cognitive damage, which was a difficult realization for her.

Why is Éireann expected to stay on anti-seizure medication permanently?

Éireann was told by her oncologist that she would never come off anti-seizure medication, which would also have a long-term cognitive impact.

How did Éireann react to the prognosis of having 11 years left to live?

Éireann found it extremely difficult to process when her oncologist told her she likely had around 11 years left to live. The blunt phrasing of 'never living a long life' was especially hard for her to hear.

What was Éireann’s hope regarding clinical trials, and how was that affected by her latest appointment?

Éireann had hoped that clinical trials might be an option for her, but her oncologist explained that she wouldn’t qualify for trials due to the unspecified nature of her tumor.

How has Éireann's condition affected her mentally over time?

Éireann feels that her mental sharpness has declined compared to last year, and learning that her cognitive abilities will continue to worsen due to treatments and medication was a tough realization.

How does Éireann plan to approach getting a second opinion?

Although her oncologist downplayed the need for a second opinion, Éireann is determined to pursue one after taking time to process her situation, and she plans to push for it at her next appointment.

Outlines

00:00

💔 Facing Difficult Conversations and Medical Realities

Éireann opens up about a long-avoided video, warning those in similar situations to avoid watching due to the distressing nature of the content. She describes her overwhelming feelings from a recent oncologist appointment. Initially given two treatment options in Canada for her brain cancer (chemo/radiation and BFF inhibitor medication), she now only has one. The oncologist explained the cognitive impact of anti-seizure medication and radiation, leaving her disheartened to learn that her current mental state is as good as it will get.

05:00

😢 Coping with a Terminal Prognosis

Éireann reflects on hearing for the first time that she only has around 11 years left to live. This harsh reality, especially at the age of 27, brings immense fear and sadness. She shares how this appointment marked the first time she cried during a consultation. Éireann recounts the disappointment of being told she won't qualify for clinical trials due to the vague nature of her tumor, and the frustration of losing treatment options.

10:00

😔 Processing Grief and Hopelessness

Éireann delves into the mental and emotional toll of her diagnosis, sharing how she and her family are grappling with the news. She discusses moments of despair, including a distressing TikTok video about brain cancer and the decline she might face. The lack of funding for brain cancer research and its devastating effects—particularly on young people—leaves her feeling hopeless. Despite this, she holds onto a faint hope that medical professionals might be wrong about her prognosis.

15:03

💬 Finding Comfort in Laughter and Normalcy

Amid the difficult news, Éireann expresses deep gratitude for her partner Deon, family, and friends, who support her during both good and bad times. She cherishes moments of joy and normalcy, such as laughing with Deon or spending time with friends without discussing her illness. These instances help her focus on creating meaningful memories. She also reflects on the importance of appreciating life and encouraging others to value their loved ones.

🫶 Taking Time to Heal

Éireann ends the video with a message of love and appreciation, urging viewers to tell their loved ones how much they mean to them. She plans to take some time to process everything, relax, and focus on her well-being. Éireann leaves with a hopeful note, promising to return after a break and wishing her viewers well before signing off.

Keywords

💡Brain Cancer

Brain cancer is a malignant growth in the brain that can lead to serious health issues and is often difficult to treat. In the video, Éireann discusses her own battle with brain cancer, describing the challenges of treatment options and prognosis. It is portrayed as a relentless disease, and Éireann expresses her frustration over the lack of research funding dedicated to it.

💡Chemotherapy and Radiation

These are common treatments for cancer that involve using chemicals (chemotherapy) or high-energy rays (radiation) to kill cancer cells. Éireann mentions these as one of her two main options for treating her brain cancer, highlighting the toll they can take on a person’s quality of life, including potential brain damage and cognitive decline.

💡BFF Inhibitors

BFF Inhibitors are a type of targeted therapy that interferes with specific proteins in cancer cells. Éireann initially believed this treatment could slow her tumor growth, but her oncologist in Ireland advised against it, stating that it could actually worsen her condition. This marked a significant shift in her treatment plan, reducing her options.

💡Prognosis

Prognosis refers to the likely course and outcome of a disease. Éireann was told she has approximately 11 years to live, which was a devastating revelation. The prognosis was a stark reminder of her limited time, and she describes it as a 'punch in the face,' underscoring the emotional impact of confronting such a harsh reality.

💡Cognitive Decline

Cognitive decline refers to a reduction in mental abilities, such as memory and reasoning. Éireann mentions how her anti-seizure medication and potential radiation treatment could permanently affect her cognitive function, which she finds particularly distressing as she notices a decrease in her sharpness and memory compared to the previous year.

💡Clinical Trials

Clinical trials are research studies that test new treatments or therapies. Éireann was initially hopeful that she could participate in clinical trials, but her oncologist informed her that she does not qualify due to the unspecified nature of her tumor. This eliminated another potential avenue for treatment, adding to her sense of hopelessness.

💡Support System

A support system includes friends, family, and partners who provide emotional and practical support. Éireann speaks about how crucial her partner Deon and her family have been in helping her cope with her diagnosis and treatment. She emphasizes the importance of their presence, strength, and positivity during such a challenging time.

💡Fundraising for Cancer Research

Raising money to support research aimed at finding better treatments or cures for cancer. Éireann expresses her frustration with the lack of funding for brain cancer research, noting that it is the leading cancer killer of young people but only receives a small fraction of cancer research funding. She discusses her desire to contribute to fundraising efforts.

💡Quality of Life

Quality of life refers to the general well-being of individuals and societies, outlining negative and positive features of life. Éireann reflects on how her treatment options might extend her life but could significantly impact her quality of life due to side effects like cognitive decline and the need for continuous medication.

💡Acceptance and Perspective

Acceptance is the process of coming to terms with a difficult reality, while perspective refers to one's outlook or viewpoint. Éireann talks about accepting her prognosis and trying to focus on making the most of her remaining time. She urges viewers to appreciate their own lives and relationships, stressing the importance of gratitude and perspective before facing a life-altering situation.

Highlights

Éireann advises those in similar situations to avoid watching the video as it could be upsetting.

She shares how overwhelming it was to have her oncologist appointment and learn the extent of her treatment.

Éireann explains that chemo and radiation will take up a year of her life, a detail she hadn't expected.

She was told that her tumor's BFF mutation made her eligible for BFF Inhibitors, but her oncologist warned it could accelerate her decline.

The shock of losing options for treatment, going from three to one, was emotionally difficult for her.

She was informed that she would remain on anti-seizure medication for life, affecting her cognitive abilities.

Éireann finds it difficult to accept that her current cognitive state is the sharpest she'll be going forward.

Her oncologist mentioned she will never qualify for a clinical trial due to the vague nature of her brain tumor.

The hardest news to hear was that she has approximately 11 years left to live, which hit her like a 'punch in the face.'

Éireann reflects on the emotional difficulty of hearing that she will 'never live a long life.'

She shares her experience of breaking down in tears during the appointment, the first time she'd cried in front of her medical team.

After learning about the limited research for brain cancer, Éireann feels hopeless about future advancements.

She is determined to get a second opinion despite her oncologist's lack of encouragement.

Éireann talks about the mental toll of researching her condition online, particularly after learning about the grim reality of brain cancer decline.

She expresses deep gratitude for her partner, Deon, and her family, who have been a strong support system.

Despite the difficult news, Éireann is focused on making good memories with her loved ones, emphasizing the importance of cherishing time together.

Transcripts

Hiya what's the craic? It's Éireann. I'm finally  doing the video that I've been avoiding for about  

a month now I do want to start this video  by asking if you're in a similar situation  

to me please please don't watch this video  I feel like you'll get nothing good out of  

it at all it's just going to upset you and  i' feel really really bad for that so please  

don't watch it and if you're someone that's  close and I haven't had this conversation  

with you there is a good few of you and it's  because I don't want to have to cry for each  

individual conversation that I'd have to have  um I just I would just rather not do that so so  

I've written a few notes on my phone so that I  can figure out what I'm going to say I've been  

overwhelmed so I had my oncologist appointment  and the first thing I've written down then is  

the chemo and radiation if you've watched one  of my older videos you'll know that I was told  

in Canada that I basically had like two options  to fight brain cancer which was the first one was  

the chemo and radiation and the second one was the  BFF inhibitor medication so because my tumor had  

a BFF mutation that I would qualify to get BFF  Inhibitors and that it's not saved anyone but  

it can slow down the timeline for some people so  we were told that was a very very good thing over  

there so when I went to the oncologist here for  the first time they explained that when I do get  

the K1 radiation together that it'll will take up  one year of my life which I just wasn't expecting  

that um but they didn't clarify how long that  would be when I was in Canada so I just didn't  

really know what to expect and again like they  said in Canada they said that they would have  

given it to me by now if I wasn't so young they  just don't want me to have brain damage when I'm  

in my 20s so I didn't know it was going to be like  a whole year of time kind of threw me a little bit  

and then we talked about the BFF Inhibitors and  and this oncologist was like no they said yeah it  

does you know slow it down for some people but  it can speed it up for people too so they die  

quicker so they were like yeah I just don't think  that you should do that so for us to like have  

like two options and that to go down to one was a  little difficult they did explain that they don't  

think I'll ever come off antiseizure medication  too and they said that that is going to affect me  

cognitively as well obviously when you get the  radiation on your brain it's going to give you  

brain damage but they said youve be on the anti  seizures too it's going to affect you cognitively  

I don't really know where I stand with that  because some people be on antiseizure medication  

their whole life so I was a little confused but  this whole time I thought you know this time last  

year this is why I've been avoiding this video  this time last year here I felt a lot sharper  

than what I do know I've been telling myself that  my memory and stuff all that will get better once  

I come off my anti-seizure medication but to be  told no you're never coming off them and that's  

in fact going to get worse was very difficult to  hear to be told where you're at no is the sharpest  

of where you're going to be was very heart process  yes and I'm sorry if my words are coming out funny  

I'm trying not to cry too hard I'm literally  just like fighting it the whole time we were  

also hoping that we would have chemo radiation  the B Inhibitors and we were hoping that clinical  

trials could be an option down the line but this  oncologist told me that I will never qualify for  

a clinical trial because my brain tumor wasn't one  of the specific types right if you watched any of  

my older videos you'll know that they couldn't  give me a definitive like name for it that's  

almost like a mix like all they know is that it's  came from a Glo cell so it's a very vague name of  

like a Goma but they couldn't tell me what type of  Goma and so they said because of that I'll never  

qualify for a clinical Tri which was extremely  difficult to hear so we almost felt like like  

we had three options and that went down to one  in a quick 10minute appointment then I was told  

that I have around 11 years left so I'm going to  probably die in my 30s and I appreciate the truth  

but hearing it even worded in a different way  like I've never been told 11 that was difficult  

but hearing things worded in a different way  it feels like you're being like punched in the  

face really and so to be told the words you're  never going to live a long life it's just not  

going to happen to be told like the word never  was extremely difficult um keep it in mind one  

of those is going to be the chemo radiation Year  and God knows how much that time will be taken up  

by surgeries and stuff like that um and just like  declining so to be 27 and you think of 11 years  

it's extremely scary in all of the appointments  that I've had over the last year I haven't really  

cried on one the one that I cried in technically  was when we went to the emergency room and they  

found the chimmer so I didn't cry after they  find it with the CT when they did the MRI and the  

surgeon told us it really wasn't good and you need  immediate brain surgery I waited until he left the  

room until I cried and during this appointment I  just burst out crime it's the first one I actually  

like cried at and so I actually just felt bad  for the doctor and for everyone else in the room  

because I wouldn't know what to say to me it was  just extremely difficult to hear and keep in mind  

my dad had driven me D like a couple hours D  to go to this appointment it was just tough  

then to do the drive back and he just try and  process everything I did ask the oncologist  

about what I was originally told about sending  the chimmer over to England so that whenever new  

tests become available they could do the test  there and the call just basically said like  

nothing's going to change in that time there's  no point nothing going to change and I did say  

well I want a second opinion and he kind of was  like and he was a lovely doctor but he kind of  

was like you can if you want but like I really  I don't think you should I don't think there's  

a point and so we kind of laugh at that but now  that I've had like a month I'm very much like no  

I need another opinion but I guess I'll have to  wait until my next appointment to really push for  

that it's been difficult for my family to process  and I keep falling and in and out of rabbit holes  

which is not good like you're not supposed to  do that but I keep like going down paths and  

and you know finding out more information that  I really should so I'm trying not to do that  

anymore but for example I was scrolling on Tik  Tok the other day and I seen a nurse that works  

in a hospice and someone asked her what's the  worst thing you've ever seen someone die from  

and I've never seen that and anything like that  on Tik Tok and she said definitely brain cancer  

and she was like especially because a lot of the  time people are so young and so they're fit and  

so they're body tries to stay around for longer  which then I thought I've never actually looked at  

how I'm going to die like what the decline would  be like and that was awful like I wish I hadn't  

have looked that up and so if anyone is in that  situation like you better not be watching anymore  

but if you are like please don't ever look it up  it's just not good and it just made me feel really  

bad for Devon and my family and my friends it  just it almost feels selfish for them to have to  

be there for me which I know won't make sense to  people but it's just really tough for brain cancer  

to be the biggest cancer killer of children and  adults under the age of 40 and yet only 1% of um  

cancer research funds to go towards brain cancer  is ridiculous and it's because they don't make  

any progress in it like so many people just die  from it that they just aren't making progress with  

research so they just put the money elsewhere and  I understand that all our cancers need research I  

get it but for us to be the biggest cancer killer  and for us to have no research is just painful  

it's really bad if you told me a year ago that  I would give every single penny that I'll ever  

make to be able to swap my C for a different one  I would be like that would never happen they're  

all awful and they are they're all awful but brain  cancer definitely is the worst like there's just  

no there's just no hope really as of right now  and I really really hope that I'm wrong I hope  

that all these doctors are wrong but I've watched  so many people like on YouTube and elsewhere where  

they them or one of their family members are  suffering through this and it's loisy because  

Everyone is always hoping and wishing and telling  them that like you're going to be the one you're  

going to be the one and of course they never  are and so of course like my friends and family  

is going to say that to me and I'm going to like  hope but it's just awful to see other people like  

go through that and not make it it's just really  painful and like especially there was there was a  

boy that passed away there not that long ago he  doesn't left that far from me he was called Kon  

and they finded his brain chimmer a year ago  when he was 19 and he just passed away there  

a few weeks ago at 20 so it was just awful and  like I've never met him I've never met any of his  

family and I cried for days and my family were  so upset for days because it was just awful he  

died at 20 years old and it was just so quick and  so sad and like obviously that's sad for everyone  

but I feel like in the position that we're in  it just is so heartbreaking you just feel it  

different I don't know how to explain it do  you think that I would love to swap cancers  

with someone else and that we boy Keen would love  to swap positions with me to have 11 more years  

it's just heartbreaking like it's just it's just  hopeless it really is it's so difficult and it's  

like I was really dedicated before I had this  appointment to try to figure out how to raise  

more money for cancer research and I feel like  with this I just have been like knocked out like  

I just have not done much so I'm going to really  try and focus on that once I like come around I'm  

just trying to take a minute and like obviously  I wanted to do this update well I didn't want to  

do the update but I didn't want to not update you  but I feel like after this like I need a minute my  

next appointment is probably a month maximum two  months so that's not that long to to just take  

time away from it but I would just love to like  have a breather I swear deavon has been the best  

partner like I will forever be grateful for him  Deon has been so strong during this time and my  

family have been so strong it's so difficult for  everyone to process I will forever be grateful for  

Deon and how strong he is and how positive he is  and how funny he is and how much he's been there  

for me during this time and there was like a day  like a few weeks ago where we were just laughing  

so hard in the car and I said to him I almost  wish that we didn't get along so well like I  

wish we weren't so happy because it would make  this time so much easier so that we we weren't  

like so upset at the thought of this ending I'm so  so grateful for him and all of the people that are  

there for us on the good days you know to take us  so have a coffee or ring us up and make us have a  

laugh and not necessarily address it we really  appreciate that too because we're so focused on  

making good memories not just having the bad days  the way I'm having right now but to just focus on  

the time that we have left about making memories  having a laugh just like being there I really  

really appreciate that even like when we went to  Germany that I posted the videos from we had such  

a nice time and like even like my friends that  just came up like last weekend we just went out be  

had a whole day out together like just the girls  and we didn't bring it up once which might sound a  

little odd to some people but for me like I really  appreciate days like that too where everything's  

just normal and it's just nice but I that's just  where we've been trying to process stuff and I  

know this is quite a negative video but I promise  like 99% of the time that we be like focusing on  

the good side of things and it can just be a  little difficult at times obviously when we're  

trying to process that information um but I like  I said we appreciate like our whole support system  

and even like the nice comments like we love just  getting away pick me up someone left such a funny  

comment on my last video and I can't remember it  I but it really made me and Deon laugh and I just  

people are so so lovely on here so we really  appreciate you I promise that everyone that's  

watching this probably feels like they'll never  be in this position and that they're never going  

to die and I promise every single person is but  don't let yourself get to the place where you have  

to lose someone or you have to be the one that's  getting sick getting all to get to the place that  

we're at where everything is in perspective don't  let yourself have to wait for that slap across the  

face of reality like please be grateful for every  day like love your friends love your family just  

focus on make a memories please do that no because  I promise you dur the line You'll appreciate it I  

am sorry Sor for being the bearer of bad news  of course but I I think I don't really know  

what else to say so if you've made it to the end  of this video thank you very much for watching  

I hope that you're okay and that your friends and  family are all right and please go tell them that  

you love them go give them a hug go take them  out for a coffee or just be there for them go  

walk your dog or something and I promise you'll  thank me later on but I'm going to leave it at  

that I'm literally going to go make a cup of tea  and get back into bed and watch a follow and just  

kind of come around and just take the time that I  need so I I will see you next time bye-bye [Music]