I hate brain cancer
Summary
TLDRÉireann 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
💔 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.
😢 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.
😔 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.
💬 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.
Mindmap
Keywords
💡Brain Cancer
💡Chemotherapy and Radiation
💡BFF Inhibitors
💡Prognosis
💡Cognitive Decline
💡Clinical Trials
💡Support System
💡Fundraising for Cancer Research
💡Quality of Life
💡Acceptance and Perspective
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]
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