Sealed with a CNS
Sealed with a CNS
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Fighting for a Brain tumour diagnosis. A mum's story #InternationalBrainTumourAwarenessWeek
Eve talks to us about her son Josh's experience of being diagnosed with a brain tumour. Josh wanted his story to be heard to help others where he could not be helped. Josh was told he was too young to have anything more serious wrong and sent away. Josh felt raising awareness of signs of a brain tumour was so important he spoke to ITV news just two hours after his brain biopsy. The link to this is the same.
www.itv.com/news/london/2023-09-05/young-fathers-brain-tumour-mistaken-for-appendicitis
มุมมอง: 2 531

วีดีโอ

Living with a glioblastoma, being a mum and making the most of each day
มุมมอง 2.7Kปีที่แล้ว
Elisabeth shares her experience of being diagnosed with a glioblastoma and the three years that have followed. Elisabeth was diagnosed during the COVID-19 pandemic in 2020 and shares her experience of fighting to find out what was wrong with her. Elisabeth is also a mum of two young children and shares how they have dealt with her diagnosis. She is hugely inspiring and has generously given her ...
Family, friends, support and my Glioblastoma, Chris's story
มุมมอง 938ปีที่แล้ว
Its international brain tumour awareness week. To mark this Chris tells us how he has remained positive throughout his Glioblastoma diagnosis and treatment
The Brain Tumour Charity Celebrating You Awards
มุมมอง 201ปีที่แล้ว
We were delighted to find out we had been nominated for the professional excellence award. The Brain tumour Charities awards are truly an honour to be part of. The night saw so many wonderful people contributing to the world of brain tumours, from volunteering, fund raising, research and young ambassadors. It was a very moving evening full of hope and inspiration whilst acknowledging the realit...
Living alongside a loved one with a glioblastoma diagnosis, Anna's story.
มุมมอง 7Kปีที่แล้ว
Anna is the wife of Alex who has spoken to the team before about living with a glioblastoma diagnosis. Here Anna talks very openly about her struggles since Alex's diagnosis, and the impact that this disease has on loved ones. We are very grateful for Anna's honest account and we hope that this will help others who are going through something similar.
All the things financial from making a will to getting travel insurance
มุมมอง 92ปีที่แล้ว
Vicky and Jess talk today on financial advice and where to go for support and advice whether it be for a will or lasting power of attorney or for more pleasurable things like planning a holiday and wanting to get travel insurance. It can feel a minefield to navigate and you are not alone. This is by no means an exhaustive list. Patients being treated at Kings and GSTT can access financial advic...
Caring for a person with a brain tumour
มุมมอง 1Kปีที่แล้ว
The wonderful Anna and Marius have kindly given us their time today to talk about their son Freddy who is living with a brain tumour. We have had the great pleasure of knowing Freddy and his family since 2019. Anyone watching this who knows their family will appreciate what special people they are. They talk about receiving and navigating a brain tumour diagnosis. Here they share the story thro...
Matt and pushing the boundaries in Brain Tumour surgery
มุมมอง 254ปีที่แล้ว
Matt, one of the brilliant Neurosurgical Registrars who is currently doing full time research in the department of surgical intervention at Kings College London has kindly given us his time to talk about the latest developments and their work in improving patient outcomes through surgery. #BTAM
Returning to work following diagnosis of a Brain Tumour
มุมมอง 238ปีที่แล้ว
We count ourselves extremely lucky to have Olivia our amazing occupational therapist in our multi-disciplinary team. Many of you will have had the benefit of her wisdom and motivation. Today she talks to Ellie about returning to work. Please leave any comments below or questions you have and we will try to get back to you as soon as we can. #braintumorawarenessmonth #bettersafethantumour #acure...
Chevy, keeping positive with a brain tumour diagnosis
มุมมอง 1.2Kปีที่แล้ว
An honest and open account of what being diagnosed and living with a brain tumour is like, how to keep positive and live with its presence. Thank you for sharing this Chevy, you certainly inspired us x
Welcome to Brain Tumour awareness month 2023
มุมมอง 114ปีที่แล้ว
Hello and Welcome back. It is a year since we started posting video's to this channel to help raise awareness of Brain Tumours, their treatments, the impact they have on daily life for those affected and their loved ones and to start a conversation. We will be posting stories from people living with a Brain Tumour, updates from charities on their work and sharing some of the updates we have on ...
Mary's story; The importance of rehabilitation after a brain tumour diagnosis
มุมมอง 8022 ปีที่แล้ว
Mary and Martin talk to us about Mary's positive outlook, and how important the input from physiotherapy and occupational therapy have been in her recovery.
Alex's story; living life with a Glioblastoma diagnosis
มุมมอง 37K2 ปีที่แล้ว
20th July is Glioblastoma (GBM) awareness day. In this video Alex tells his story through diagnosis and treatment, and how is still managing to live life too the full and focus on the positives. - Instagram - alexsavage4 - Sun article -www.thesun.co.uk/health/19242878/brain-cancer-tessa-jowell-foundation/ - LADBible article -www.ladbible.com/community/lad-fighting-for-his-life-af...
GBM awareness day
มุมมอง 2912 ปีที่แล้ว
Hello from the neuro-oncology nurse specialist team at Kings on Glioblastoma awareness day! We wanted to talk today about Glioblastoma tumours and help raise awareness of this rare cancer which is hugely underfunded and requires a place on the world stage when talking about cancer funding and treatments. We still don't know why people get this tumour, we have limited treatment options and the d...
Awake craniotomy - A patient's story
มุมมอง 1.5K2 ปีที่แล้ว
Today Garrow shares his experience of being a year on from an awake craniotomy for a brain tumour. He shares what he can remember of the surgery and offers a unique insight in to the experience of this kind of operation and the process around it.
Brain Tumour Awareness month round up
มุมมอง 992 ปีที่แล้ว
Brain Tumour Awareness month round up
A patients story - Julian and Lucy
มุมมอง 1142 ปีที่แล้ว
A patients story - Julian and Lucy
A patients story: Julian and Lucy talking about recovering from treatments and a carers perspecive
มุมมอง 1702 ปีที่แล้ว
A patients story: Julian and Lucy talking about recovering from treatments and a carers perspecive
Seizure management with Dr Joe
มุมมอง 742 ปีที่แล้ว
Seizure management with Dr Joe
Patient Stories: being diagnosed with a brain tumour in your 20's; Time, Tea and Toast!
มุมมอง 1.1K2 ปีที่แล้ว
Patient Stories: being diagnosed with a brain tumour in your 20's; Time, Tea and Toast!
Patient Story: Living beyond a Glioblastoma diagnosis
มุมมอง 3.5K2 ปีที่แล้ว
Patient Story: Living beyond a Glioblastoma diagnosis
Clinical trials and Brain tumour research with Professor Ashkan
มุมมอง 4102 ปีที่แล้ว
Clinical trials and Brain tumour research with Professor Ashkan
10 ways we can help - And chocolate in the post!
มุมมอง 542 ปีที่แล้ว
10 ways we can help - And chocolate in the post!
The role of the Clinical Nurse Specialist
มุมมอง 2272 ปีที่แล้ว
The role of the Clinical Nurse Specialist
Patient story: My diagnosis in my words and link to Martin's brilliant podcast
มุมมอง 2412 ปีที่แล้ว
Patient story: My diagnosis in my words and link to Martin's brilliant podcast
Patient story: Managing the emotional impact of a brain tumour diagnosis
มุมมอง 5342 ปีที่แล้ว
Patient story: Managing the emotional impact of a brain tumour diagnosis
Packing for your hospital stay
มุมมอง 8592 ปีที่แล้ว
Packing for your hospital stay
TMS (Transmagnetic Stimulation)
มุมมอง 2032 ปีที่แล้ว
TMS (Transmagnetic Stimulation)
Integrated Neuro Oncology Consultation
มุมมอง 1262 ปีที่แล้ว
Integrated Neuro Oncology Consultation
Neuro Theatre tour at KCH
มุมมอง 4092 ปีที่แล้ว
Neuro Theatre tour at KCH

ความคิดเห็น

  • @maxine4898
    @maxine4898 หลายเดือนก่อน

    Omg, I’m just at the beginning where you mention the smell of burning, I’m waiting for the results of a brain scan (I’ve has loss of balance, nausea and slight headaches for around 5 months) and I’ve smelled smoke and some other burning smell 3 times 😖

  • @manfrummt
    @manfrummt หลายเดือนก่อน

    My mom was decimated more by the chemo, steroids, and other meds more than the tumor itself. She probably would have died in only a few months but more peacefully than being so disabled (physically and mentally) and dying in 15 months. She was ready to die but extended it for us. She suffered greatly for us. And it did help us mend some things in our relationship.

  • @fl3219
    @fl3219 6 หลายเดือนก่อน

    My husband was diagosed on the 17 of march/24 went to Er on the 18 and surgery done at the 28 march and passed away on the 22 may in the icu .Hope he is in a better place now.

  • @jacksonabello6448
    @jacksonabello6448 6 หลายเดือนก่อน

    Today is June 20, 2024 - How are you doing now ?

  • @Emptynestballerina1
    @Emptynestballerina1 7 หลายเดือนก่อน

    This show lies like the king of England faking cancer show

  • @jeanettedombroski3934
    @jeanettedombroski3934 7 หลายเดือนก่อน

    Please tell me Alex is still here.❤

  • @joeysaunz
    @joeysaunz 8 หลายเดือนก่อน

    Just watched this to have a better knowledge of what our son will have done before his surgery . Very well explained thank you Jose and Sarah 👍

  • @gailhanna3576
    @gailhanna3576 8 หลายเดือนก่อน

    You are amazing !!!

  • @kamranzaheri3016
    @kamranzaheri3016 9 หลายเดือนก่อน

    Hi, I've made a guideline for a friend suffering with grade IV GBM. It includes standard therapy, 60+ relevant supplements, Mushrooms, hydrogen therapy, sound waves, magnets and etc. it's very informative and it's FREE. Let me know if you want a copy. Hope for the best, Dr. Zaheri 🙏🏼🙏🏼🙏🏼🙏🏼

  • @kamranzaheri3016
    @kamranzaheri3016 9 หลายเดือนก่อน

    Hi, I've made a guideline for a friend with grade IV GBM. It includes the standard therapy in addition to 60+ relevant supplements, mushrooms, sound waves, magnet therapy and etc. it's very informative, let me know if anyone wants a copy & it's FREE. Hope for the best. Dr. Zaheri 🙏🏼🙏🏼🙏🏼

  • @kamranzaheri3016
    @kamranzaheri3016 9 หลายเดือนก่อน

    Hi, I've made a guideline for Grade IV Glioblastoma including current treatment info, , 60+ supplements that are relevant to GBM, mushrooms, magnet therapy, sound wave & music, and much more. I wrote it for a friend suffering with grade IV GBM. If anyone is interested let me know. It's free & I can email it. Thx, Dr.Zaheri

  • @liverbird956
    @liverbird956 9 หลายเดือนก่อน

    So Josh's symptoms were Headaches and Nausea and the Doctor's took out his appendix!! Unbelievable. R.I.P Josh

  • @liverbird956
    @liverbird956 9 หลายเดือนก่อน

    What an incredibly brave and inspirational young lady. God bless her and her family ❣️🙏

  • @Banane39
    @Banane39 10 หลายเดือนก่อน

    The most effective treatments are starving the cancer through diet such as Ketogenic diet, water Fasting and medical cannabis oil.

  • @helenfbo4111
    @helenfbo4111 10 หลายเดือนก่อน

    Just seen this.....are you still doing videos?

  • @joools1953
    @joools1953 10 หลายเดือนก่อน

    I can’t believe they ignored the first CT. Disgusting.

  • @tippimaravala
    @tippimaravala 10 หลายเดือนก่อน

  • @benmayes1534
    @benmayes1534 10 หลายเดือนก่อน

    This story has settled my mind immediately! I’m just about to have this surgery next week and I didn’t know what to expect. So it’s amazing to see an insight on how it went 🫶🏻

  • @TarkanYilmaz-t1l
    @TarkanYilmaz-t1l 10 หลายเดือนก่อน

    And elmerdale

  • @TarkanYilmaz-t1l
    @TarkanYilmaz-t1l 10 หลายเดือนก่อน

    Hollyoaks

  • @TarkanYilmaz-t1l
    @TarkanYilmaz-t1l 10 หลายเดือนก่อน

    Coronation street eastenders

  • @TarkanYilmaz-t1l
    @TarkanYilmaz-t1l 10 หลายเดือนก่อน

    ❤❤❤love y

  • @TarkanYilmaz-t1l
    @TarkanYilmaz-t1l 10 หลายเดือนก่อน

    I love coronation street

  • @sanane39
    @sanane39 10 หลายเดือนก่อน

    What do you think about the treatment of medical cannabis?

  • @joyceholcomb2130
    @joyceholcomb2130 11 หลายเดือนก่อน

    I can almost repeat her story😢 I'm thankful she shared. My husband passed 22 years ago with this devil cancer😢😢 From first symptoms until death was 5 months. He had surgery, 1 week chemo and 5 weeks of radiation. Please let her know I am here for her and any others. Oh, my severe panic attack came after death, Christmas and New Year. My legs wouldn't work, shaking all over, thinking I was dying. Thank God for my doctor, he wasn't surprised at all. God Bless you and your family ❤

    • @NIPPYTHEVOICE
      @NIPPYTHEVOICE 10 หลายเดือนก่อน

      My deepest condolences

  • @alexmacleod6089
    @alexmacleod6089 11 หลายเดือนก่อน

    Ah that brought back memories. I remember helping to set those theatres up in the mid nineties (assuming they are the original ones). Mr Chandler and my ODP colleagues would often have porridge in the canteen prior to the days busy lists.

    • @Ace01234k
      @Ace01234k 8 หลายเดือนก่อน

      Mr chandler is a hero he save my life

  • @Ron-b7g
    @Ron-b7g ปีที่แล้ว

    CK OUT JOE TIPPENS CANCER PROTOCOL FENBENDAZOLE RIGHT AWAY, FENBENDAZOLE KILLS CANCER CELLS. AND JESUS LOVE'S YOU.

  • @kandiceblu1
    @kandiceblu1 ปีที่แล้ว

    Do you believe they missed it? The CT scan anomaly I think he called it? It's hard to believe that if someone is trained to read them

  • @4BarbaraJ
    @4BarbaraJ ปีที่แล้ว

    I wonder if you let his dr and original hospital know of the grave errors they made. I hope so. My adult daughter was misdiagnosed also. Dr told her she needed to see a psychiatrist because she was making her symptoms up. This after she had been given several rounds of antibiotics for nonexistent sinus infection. Her symptoms were typical brain tumor signs. She had a golf ball sized tumor on her brain stem. Once a specialist diagnosed the tumor she had surgery right away. I’m so sorry that your family had to go through this. ❤

  • @joeysaunz
    @joeysaunz ปีที่แล้ว

    It’s so wrong that there isn’t a strategy for diagnosis like there is for breast cancer or testicular or bowel cancers . If I go to my GP even with a slight pain in my breast I would see someone within 2 weeks . Surely prevention is better than cure

  • @gillianforrester558
    @gillianforrester558 ปีที่แล้ว

    So sorry for you and your family. May Josh's soul watch over you all from wherever he is.

  • @incognito595
    @incognito595 ปีที่แล้ว

    Blame The Victim! Despicable treatment! That is All Too Familiar to me. I am so sorry.

  • @John-xp8fc
    @John-xp8fc ปีที่แล้ว

    Ozone therapy discussed w James Sloane / The Healthy Life th-cam.com/video/_gLyDsmndrk/w-d-xo.html

  • @eileenogorman3578
    @eileenogorman3578 ปีที่แล้ว

    Thank you so much gbm is awful you are such an inspiration and you give me such strength ❤❤

  • @eileenogorman3578
    @eileenogorman3578 ปีที่แล้ว

    You are an inspiration so positively thank you

  • @emps3546
    @emps3546 ปีที่แล้ว

    Omg how terrible, I am so sorry your darling child had to go through this. He is making a difference now RIEP Josh.🙏🏿

  • @janetmyers3729
    @janetmyers3729 ปีที่แล้ว

    You give me hope for my sister who was diagnosed his summer.

  • @pam164
    @pam164 ปีที่แล้ว

    My father died of a brain tumour 44 years ago. It saddens me that no money is going into research into this deadly condition. It really hasn't moved on that much in 44 years.

  • @pam164
    @pam164 ปีที่แล้ว

    Headache, sickness going on for ages, and they don't look at his brain? Appalling .

  • @vivaloz1030
    @vivaloz1030 ปีที่แล้ว

    💕🙏💕

  • @edda682
    @edda682 ปีที่แล้ว

    Terrible treatment by your surgery and the hospital, so sorry.

    • @carolemoore8505
      @carolemoore8505 10 หลายเดือนก่อน

      If its the nhs it's typical!!!

  • @edda682
    @edda682 ปีที่แล้ว

    Incredible lady, keep doing what you're doing,

  • @janetmyers3729
    @janetmyers3729 ปีที่แล้ว

    My sister’s diagnosed in June of 2023 at a point was already “depleted” because her husband of 34 yrs had recently died after a long battle with Lewy Body Dementia followed by a legal battle with his family. She was devastated by the loss and the arguments, but had just begun to recover and start looking forward again. It has taken her four months to show any sign of fighting her way out of deep depression. Everyone’s starting emotional starting place is different; you can’t prepare backwards. I’m so glad you’re doing well and I want to believe that my sister will maintain her recently achieved outlook. Thank you for sharing your experience. I hope you will have continued success.

    • @edda682
      @edda682 ปีที่แล้ว

      He's very positive and it's lovely to see, what a nice bloke.

  • @terrylinton425
    @terrylinton425 ปีที่แล้ว

    Amazing bravery. An inspiration to others, enjoy life while you can ❤️❤️❤️

  • @joeysaunz
    @joeysaunz ปีที่แล้ว

    This was a great video , thanks Anna for being so honest . I have sat here nodding away and agreeing to almost everything you’ve said . The guilt , the panic , the sadness , the anxiety, the hope . I’m feeling it all with our son being diagnosed last November with an Astrocytoma. It was so wonderful to be able to message Alex as I knew he had had a seizure on the beach in OZ as Ollie had one last weekend which was his first since his operation and was very scary . Thank you to both of you for taking the time to help others . It’s not nice to have to keep talking about it , when really you just want to forget about it .

  • @margaretmariconte1316
    @margaretmariconte1316 ปีที่แล้ว

    I lost my third son to gliablastoma brain cancer so sad to see so many young people my other two sons died of car accident and liver failure she is so brave god bles her margaret mackay qld aust

    • @edda682
      @edda682 ปีที่แล้ว

      Awful, so sorry.

    • @pam164
      @pam164 ปีที่แล้ว

      Thats so sad. So sorry. Life is so unfair.

  • @janetmyers3729
    @janetmyers3729 ปีที่แล้ว

    Everyone/anyone - is it common to be told not to drive when you begin radiation in combination with oral chemotherapy?

    • @janetmyers3729
      @janetmyers3729 ปีที่แล้ว

      Anna’s talk is so helpful. I will be my sister’s sole caretaker when she begins treatment. I’m quite terrified.

    • @joyceholcomb2130
      @joyceholcomb2130 11 หลายเดือนก่อน

      Yes

  • @jackb9379
    @jackb9379 ปีที่แล้ว

    I watched this last night, and then spent a few hours listening to Martin's podcast. I live in Southern California, and for the past several months have been receiving testing and consultations with the specialists at Loma Linda University, a bastion of advanced medical care in the United States. For the longest time they were leaning toward a diagnosis of tumefactive multiple sclerosis, because of the nature of the brain lesion that I have, and the indications of several MRIs and MR spectroscopy. However, my lesion is in a particularly difficult area to treat, given that it is in a critical area affecting my motor cortex, and a definitive needle biopsy has thus far not been done---given the composition of the lesion, it would not be a high yield result. My latest MRIs show that the lesion is growing, however, and now I really haven't any choice but to go through an excisional biopsy, which basically is a craniotomy. Mine will be an awake procedure, something I am preparing myself for. I meet this week with my neuro-oncologist, and then the following week with the neurosurgeon, who will go over the particulars of surgery. We will also decide what level of deficit I might be willing to accept...as stated, this lesion is in a bad area. At any rate, the general consensus now is that it is not tumefactive multiple sclerosis, but a malignancy. The neurosurgeon mentioned astrocytoma, but glioblastoma is another possibility. Watching these videos, and listening to Martin's podcast, has been very helpful to me. I have in common with Martin the fact that I am not depressed in the slightest about all of this. I find it strangely fascinating to be going through it all, in fact. I have always had an irrepressible sense of humor...which I suppose is correctly spelled "humour" in Britain, but I am a barbarous American...and I appreciate finding others who have gone through, and are going through, these same things, with the same cheeky outlook. So, let me offer my thanks. And dear Martin, please know that you have inspired me. I remember the quote from Simone de Beauvoir, who, writing about Simone Weil, said, "I envied a heart that could beat across the ocean." It is my great pleasure to find just such a heart, and through this video and your podcast, make its acquaintance. ~ Jack

  • @alexajessop5590
    @alexajessop5590 ปีที่แล้ว

    She is very brave. Sitting there and just talking about it.

  • @tabithaedwards745
    @tabithaedwards745 ปีที่แล้ว

    Kinda shocking how many people have cancer diagnosis after 2020 vaccine's??