POST 1: Life with a Brain Tumour

Anna SwabeyHi I am Anna Louise Swabey, I am 23 years old and I have recently been diagnosed with a brain tumour. (It still feels bizarre when I write that down or say it out loud.)

I have decided to start writing about my ‘brain tumour journey’, in the form of this blog “Inside My Head”.

Why start a blog?

By writing this blog I hope to achieve 4 things:

  1. On a selfish level, I am hoping that expressing my thoughts and feelings during this difficult time will be a good coping mechanism for me.
  2. I want to support others who may be experiencing a similar battle. Even if one person reads one blog post and can relate to how I am feeling, and it makes them feel like they are not alone, I will view that as a success.
  3. I want to raise awareness of Brain Tumours themselves. Before I was diagnosed, I knew absolutely nothing about the illness. Now, after further research, I have discovered that brain tumours kill more people under the age of 40 than any other cancer. It is, however, unfortunate to say that even though this is such a life destroying cancer, and we need to do soooooo much more research, it only receives 1% of national cancer research funding. This NEEDS to change!
  4. I want to raise as much money as possible for brain tumour research charities, in the hope that this may help, not only my prognosis, but other people’s, and, so that in the future, other people do not have to experience this journey at all.

Who was/Who is/ Who will be Anna Swabey?

In this first post I would like to introduce myself a bit further… Who I was; who I am now; and who I want to be in the future.

Who I was:

  • Up until January 9th 2015, I was living a completely ‘normal’ life (although, if we are being honest, I don’t think anybody would have ever of described me as ‘normal’!)
  • 48ba208c971eda37c2e8b8e91e3287dfI studied Languages and European studies at the University of Portsmouth, and was delighted to graduate with a First Class Honours degree in 2013.
  • I have always been a very active person, and have a particular love for netball. My fondest memories from University involve the amazing times I shared with the girls from the University Netball Team.55f6baf1a555a3653db04ccbda1954be
  • Not only have I enjoyed playing sports, I am a keen spectator also. I am a MASSIVE Rugby Union fan, and had a season ticket for Leicester tigers since I was 8 years old. Living down in Portsmouth made it more difficult to get to matches, however the 3 hour drive was always worth it! My parents and I have travelled Europe supporting our team also. My football team is Stoke City, so all in all, when it comes to sport, I am a bit of a lad!
  • 10708f5c812d344dc0add3e16d6d7675That isn’t to say however that I am not a girly girl when it comes to fashion, make up, taking “selfies” etc….as I most definitely am!e7da2db8e2f1e5d32c4d18a2f5c128ba
  • I was a very sociable person, a bit of a chatterbox and friends often compared me to my comic idol, Miranda – tall, a bit clumsy, and always getting myself into awkward social situations!
  • I have always been very family orientated. I am very close to my parents, my sister, my brother, my niece and my four nephews. The only difficulty being, that as I chose to go to University in Portsmouth, the majority of my family live up in the North East of England.a85403fdf8def850e65d5867d543a62b
  • I have always been a big kid at heart, and I am obsessed with Disney. My Mum, Sister, my niece and two of my nephews and I went to Disneyland, Florida for two weeks last summer – WOW!

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  • I was always very ambitious, I always wanted to be successful, and I was determined I was going to have an amazing career. Throughout my life, I have been a perfectionist, never settled for being just average.

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  • Although leading a very, as I said, ‘normal’ life, the only thing looking back that could have had any possible significance to my current situation was when I was 14 years old. I started suffering from severe shooting pains/headaches in varying locations in my head. These pains would only last for about 15-30 seconds and then progress into a throbbing headache. As these became more regular, I went to the doctors and ended up having an MRI scan. This scan showed a tiny lesion/ shadow on my brain, however it was that small, that nothing more was done about it and these pains/headaches were put down to stress.
  • On the 9th January 2015 I had a seizure at home (gutted because I was getting ready to go to the pub!) and I was taken into hospital via an ambulance. When I was in hospital I suffered a further two seizures, I had a CT scan and an MRI scan over the weekend and this was when my life changed forever…

Who I am now:

  • I’m still Anna Louise Swabey, i’m still 23 years old, and I still have exactly the same passions and ambition as detailed above. I am still exactly the same person, however, unfortunately, after receiving my biopsy results on February 3rd 2015, I have been diagnosed with a Grade 3 Glioma, Anaplastic Astrocytoma Brain Tumour.
  • Due to the intrinsic nature of my brain tumour I was told from day one that the tumour is unfortunately inoperable, so I was just about coming to grips with the fact I would be living with it forever, regardless of what treatment could be offered. On receiving my biopsy results that day however, I was then told that it is a particularly aggressive type of tumour and also terminal, and I was given a time scale of months to a maximum of 3 years to live. No words can describe how hearing that news felt, however I will be writing a post to at least try and express my emotions that day and onwards regarding the prognosis.
  • I am very lucky to have an extremely supportive family and set of friends around me and I am now living with my family in the North East after having to leave my life in Portsmouth. Again taking the positives out this horrific situation, I am loving being able to see them every day, even though it is under these circumstances.
  • I have always been a ‘tough cookie’ and I am trying to remain as strong and positive as possible, but I certainly wouldn’t be in this positive frame of mind without the love of my nearest and dearest. It is true what they say, it is at times like these you realise how blessed you really are!
  • Now I am ready to give ‘Trev the tumour’ – yes that’s right we have named the bugger- a real good fight!
  • I have been banned from driving because of my seizures.
  • I am signed off sick from work and I am awaiting news of when my treatment can start.

Who I want to be:

  • I want to defy my prognosis, I WILL live till I am old, I WILL get married and I WILL have children and I WILL have the life I have always dreamt of! But, I am by no means naive, and I understand it’s going to be very tough and some compromises will no doubt have to be made.
  • I want to make a difference in the world and leave a mark. Now this issue is so close to my heart, I want to raise awareness about brain tumours and the devastating affects they can have on people’s lives.
  • I want to raise lots of money for brain tumour research charities to ensure that, in the future, nobody has to experience this awful disease and many more treatments are readily available and we can find a cure to save my life and many others alike.
  • I am hoping that this blog will be a good start!

Thank you for taking the time to read what I hope will be the start of many posts to come 🙂

131 thoughts on “POST 1: Life with a Brain Tumour

  1. Hi Anna, what an inspiration!! This popped up on my Facebook newsfeed as I was the sports officer at Portsmouth uni 2010-2011 and therefore know a few of the netball girls. I now work for the charity brain tumour research as a fundraising manager. Interestingly, our main research lab is actually at Portsmouth uni! It would be great to chat with a coffee sometime, let me know if you would like to.
    Lauren xx
    P.s. Also a massive rugby fan!

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    1. Sorry for my late reply on here, Lauren…Still trying to figure out how it all works. Glad you also got in touch on Facebook 🙂 Really looking forward to meeting up at some point! xxx

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  2. I think this is bloody brilliant Anna – you go girl. Oh – I’m Laura Valentines mum by the way! Whatever you need to do to keep you strong and positive – you do it. Please make the absolute most of your life now – there is nothing to say we should all live until we’re a ripe old age – and I truly believe those that leave earlier have a reason – it’s just we don’t know what that is right now! Beautifully written and I’ve shared with all my fb friends so apologies if you get swamped by randoms! Sending lots of love and can’t wait to hear about all the exciting things you are going to be doing. Don’t get ill on too much treatment – it can stop you living. Xxxx

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    1. Good Evening Maria,
      I am ever so sorry for my late reply! Thank you so much for your support….so very kind of you! I cried when I read that your amazing daughter is organising the netball tournament! What an incredible family you are. All my love and let’s go get Trev!!!! xxxxx

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  3. Hi Anna,

    I saw this post on Laura and Maria valentines wall and was shocked, saddened, touched and inspired by your blog. Your reaction to something terrifying and life changing is humbling and inspiring. You look and sound like a gorgeous young girl as I’m sure any friend of Laura’s would be.

    I work in the NHS, not as a clinician but in the change department and would be happy to promote your cause in Brighton when you come up with your ideas of how you want to raise money.

    I wish you all the luck in the world and hold out hope that you will defy the odds. If attitude and strength stand for anything then you will give this a fight to be reckoned with.

    Strength and courage from Brighton.

    Sarah

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    1. Hi Sarah,
      Please excuse my late reply….still trying to figure out how this all works!
      Thank you so much for your lovely message, really does mean more than you probably realise!
      I am certainly open to any ideas for fundraising, so if there is anything particular that you think may work well in your area, do let me know.
      Once again, many thanks!
      All my love, Anna xxx

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  4. What a strong and beautiful soul you are!you’re true gem and I wish you nothing but health and success in this world and others like you. You’re an inspiration for us all, and although I don’t know you I am so happy for your positivity and will to continue with life and beat Trev to the curve! If you ever need to speak to a stranger about anything, whether it be life serious or make up advice swaps I’m your gal / a former pompey student

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    1. Good evening Donia/my former pompey gal 🙂
      Thank you so much for your kind message, and I am ever so sorry it has taken me a few days to reply!
      Reading your words of encouragement really does help!
      I hope you continue to follow my journey and let’s beat Trev!!!!
      xxx

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  5. Hi Anna, I read your blog what a wonderful and passionate young lady you are. I just want you to know that there are always options for you. My husband sadly passed away in January after a 2 year battle with an anaplastic astrocytoma but his was upgraded to a glioblastoma. We have a young son who is 9 months old. I am sure this blog will help you. If you would like to ask me any question or advice I would love to help you in anyway I can to make this easier for you. I have researched supplements, diet and vitual trials. I even went for a second opinion about my husband through the charity Brainstrust. Just so you know you are not alone and there is a Facebook group that is set up to help. Please reply on here or look me up on facebook and I can stay in touch (if that is what you would like). Keep strong. Suzie Harwood. X

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  6. Hi Anna. I came across your blog through Facebook.
    You sound like a very strong lady, and I wish you all the luck and wishes in the world.
    Will keep checking back for an update on charity donations?
    Keep being strong 💪
    Jessi

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  7. Hi Anna. I came across your blog through Facebook.
    You sound like a very strong lady, and I wish you all the luck and wishes in the world.
    Will keep checking back for an update on charity donations?
    Keep being strong 💪
    Jessi

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  8. Hi,Anna nice to get to know you!I grew up with your auntie Pat and your mum.Although we never really kept in touch Pat and I bumped into each other over the years.You look so like your mum!I know you have a really good family and that you will achieve what you want!Love Joanne,Ian,David and Jayne.xx

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  9. Dear Anna,
    You are an inspiration to one and all. You are the most beautiful person inside and out and I hope with your determination and strength will get you through this terrible ordeal. We are all behind you every step of the way, even though we are not there, you are in our thoughts every single day.
    All our love to you and all the family.
    Love from Wendy, Andy, Ryan and Alisha xxxxxxxxxxxxxxxxx

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  10. You unbelievable strong girl! Love how determined you are! I believe anything is possible if you are that determined! I for one know if that news was told to me i would never cope like you and have the mindset you do, but I pray for you that your courage and braveness will defeat the odds! Hopefully one day doctors will have developed the technology to beat any illness and people like you are helping that happen! I wish you all the best of luck and 100% believe your outlook will bring you through!!!! You can and will do this!! ❤💪xxxxxxx

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    1. Hi Reanne,

      Apologies for my late reply, but I thank you so much for your lovely message! It’s so fab to read your words of support….and I thank you for keeping me in your thoughts! I certainly use the hope that new technologies and treatments will be discovered to help me fight this battle and to give me the determination to fundraise money for Brain Tumour Research Campaign. Together, we can BEAT BRAIN CANCER!!!!

      Thank you once again, lots of love, Anna xxx

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  11. Hi Anna,

    I just want to say that what you’re doing is so inspiring!!! One of my parents was diagnosed with a brain tumour two years ago, and despite it not being terminal, the effect it has had on their life is very difficult to deal with. You’ll be pleased to know that it was thanks to them sharing it via social media that I read your blog, so already you are making a difference to those going through something similar to you.

    I’m sending all the positive health vibes I can, stay strong and thank you, you’ve already made an impact on one of the most important people in my life.

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    1. Hi, I am ever so sorry for my late response, but all I can say is WOW….I said that one of my aims of writing this blog was to be able to help even one person, if that was for them to relate to what I am saying or to make them feel inspired etc. I am ever so sorry to hear that this disease has effected your family also, but it certainly encourages me to continue raising awareness and to raise as much money as possible to help brain tumour research, so no more families need to suffer!
      Thank you for your lovely message and I hope you continue to follow me on my journey! Send my love to your parent also….let’s beat brain cancer!!!
      Anna xxx

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    1. Hello Herald,
      Ever so sorry for my late reply! Thank you so much for getting in touch…lovely to hear from you! Ready to fight Treb with all I have! Hope you are well. My Mum and I send our love xxx

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  12. Your story has really touched me as for years I have been in and out of doctors for the exact same symptoms as you and yet after years and years of more n more visits they still havnt done anything about it and reading your story then broke my heart as I can’t imagen being in that situation as I have two lil Girls as well as a very loving family and friends and my biggest fear is leaving them alone to defend for them selves to protect them from the big bad works and I am also 23 years of age n I’m terrified and I feel in my heart something isn’t right just don’t no how to get around it about checking it just incase thank you for your story it’s really helped and my heart goes out to you so much ur so brave and strong your family and friends must be so so proud of you your an amazing woman x

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    1. Thank you so much for your message Paige, brought tears to my eyes! Your words are very kind and I thank you for your support.
      Obviously I am no expert at all, but I certainly am one to always follow my gut feeling! If you are truly worried perhaps keep pestering your GP or consider contacting one of the many support lines that I have been made aware of.
      At the same time, I sincerely hope there is nothing wrong, and I encourage you to carry on living and making the most out of every second you have with your amazing family….try not to let it take over your thoughts and life.
      Take care, Anna xxx

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  13. Hey Anna, I just stumbled across your blog on facebook. Given the situation can I still say I absolutely love your blog? After reading this I just feel like you are so strong and I can say with absolute certainty that I would not be able to handle your situation the way you do. It probably sounds really freaking strange to hear this from an absolute stranger but I am so proud of you and I don’t really know what else to say to prove it.
    All I can say is that I hope you stay courageous and strong and I wish you all the very best! You sound like you are dealing with this as well as anyone possibly could.
    I would love to keep hearing from you, it sounds like you have a lot more to say!
    All the best,
    Julia

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    1. Good Evening Julia,

      Thank you so much for your amazingly kind message – so lovely of you to take the time to say such nice things!
      I think if you had told me in December that I would find out this news and I would be dealing with it as I am, I would probably have laughed in your face! – I truly think when it is happening to you, a switch must just be flicked inside of you to make you strong! Don’t get me wrong, I certainly have my down times…I don’t think it would be healthy if I didn’t, but as I mentioned in my posts, I am so determined to make a difference and leave a mark, and I am most definitely not ready to leave this world quite yet!!!
      Hope you can continue to follow my journey and do keep in touch!
      All my love, Anna x

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  14. Anna your blog is great you are very brave, you keep fighting every day, and I hope lots of positives come your way.
    Julia’s Dad

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    1. Hi Andrew,
      How lovely to hear from you and thank you for taking the time to message me!
      I hope you and the family are all well…trying to arrange to meet up with Julia soon, which will be fab 🙂 x

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  15. i am so sorry to hear of ur news but with ur very positive attitude I’m sure u will fight it and have a happy life love Hells xx

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  16. This is a dreadful disease and I wish you every success with your blog, raising awareness and funds for research. Much more is needed.
    My brother recently lost his battle with stage 4 glioblastoma. We are all heartbroken.
    Never give up and keep strong.

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    1. I am ever so sorry to hear of your brother’s passing, Linda, and I send my love to you and all of your family! Hearing the heartbreak of others however, does only encourage me to want to do as much as possible to raise awareness and money to help brain tumour research so that other families do not have to suffer the same ordeal!
      I hope you can continue to follow my journey. Anna xxx

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  17. My first thoughts on reading your blog is what a remarkable young lady you are and the same age as my eldest son. ( he also supports Stoke City) and that’s where we are from.
    I want to wish you all the best and I think raising money to support ongoing research is such a positive idea
    Thinking of you.

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    1. Hi Michelle,
      Thank you so much for taking the time to read my blog and to message me also – very kind of you!
      Very determined to raise as much money and awareness as possible!
      I think your son has fabulous taste :P.
      Thanks again and I hope you can continue to follow my journey:) xxx

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  18. HI, up in the middle of the night, reading it for about the tenth time, still hard to believe, and still upsetting, but am looking forward to the uncensored, unadulterated version, where I am sure people will get a glimpse of the real you, your love, your concern for others and your wicked sense of humour, which, at times has made me think how you can say something so witty at a time like this, but has in a way, helped all of us to not accept, but to talk more openly and not be afraid to say how we feel . It will be a war where you may lose the odd battle, but that is allowed, we can only second guess at what you are thinking and feeling, but be assured we are with you all the way …..don’t hold back with what is in your head ….. but a warning may be needed for the faint-hearted ha ha ……. love you with all my heart xx aunty pat xx

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    1. Love to you all Pat, middle of night thinking and reading is something we are sadly getting used to xxxxxxxxxxx

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  19. Hi Anna, what an inspirational story, you are a very strong and determined young lady. My son has just finished treatment for AML leukaemia and we found that the only way to face every day, was to find positives in every situation. Believe me, somedays this is extremely difficult as I am sure you know only too well. Keep fighting Anna, your blog will be an inspiration to so many people.
    Rosie xxx

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    1. Good Evening Rosie,
      Thank you so much for your kind words and taking the time to read my blog and get in touch!
      I hope your son’s treatment has been successful and I send all my love to him and yourself and the rest of your family. I could not agree more….unfortunately the negatives are not in my control at the moment, but I do have control of the positives that can come from this situation and I am determined to make the most of every little positive that I can!
      Hope you can continue to follow my journey.
      Anna xxxx

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  20. Ps used to live in near Pompy, now in Perth, Australia- so your blog is already reaching people world wide good luck

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  21. Go girl! This is amazing, i recently had an mri scan and had the fear of this too and also suffered from horrific headaches from a young age. My mri scan showed nothing…but ur blog will always keep me questioning in a good way. U are bringing awareness and courage to people who need it! What a true inspiration. 😚 xx

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    1. Thank you so much for your message, Helen. I hope that your scans continue to show nothing sinister and I also hope the headaches aren’t causing you too much trouble. Don’t know if you are already, but my Facebook Group Page is called Inside My Head – please find the link here https://www.facebook.com/pages/Inside-My-Head/921770437853201?ref=hl If you ever have any questions, not that I am anywhere near an expert, but I am more than happy to chat about anything with you if that may settle your fears.
      Thanks again, Anna 🙂 xxx

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  22. Three years ago I was diagnosed with chordoma which has been difficult. But not undoable I’ve had an operation to remove it. Meningitis twice once involving a helicopter ride! I was out of it so didn’t see the sights.

    I been to oklahoma for 15 weeks of proton beam therapy. Met some amazing people. My message to you is keep going it will be tough but talk to your family.
    All the very best.

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  23. Hi,

    I think it is amazing that you are writing about your journey for yourself and for others. From thid first post i have no doubt that Trevor will be in for a fight.

    I love how strong you are and i would love to help raise awareness of brain tumours in any way i can.

    My names Jodie and i also want to cha ge the world so we share that in common. I am a bubbly, optimistic, adventurous person who loves life but sometimes is can be cruel and unfair. I would love to help you on this journey so the offer is there to have a chat, talk through ideas and help yourself and others in this situation.

    Stay strong : )

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  24. Hi Anna, My hubby was diagnosed with a grade 4 brain tumour in August 2014. He is also adamant that he WILL beat it. He calls his tumour ‘the toxic bean’. Bear in mind that this is just as hard for those who love you and are watching over you as it is for yourself. I had just finished treatment for grade 3 breast cancer when my husband had the onset to his tumour. I, myself, am going tomorrow for another mammogram. They will be keeping an eye on me for another 4 years. My hubby has been given 12 months. Thinking about you x Louisa

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  25. I am truly sorry for what you are having to go through. I pray that you will be healed in the name of Jesus Christ. x

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  26. Hi Anna, I’m a friend of your sister Victoria. Firstly awful news, I can’t comprehend what you have and are going through personally, but thank you for being brave to share your comments with those who to choose to read them.

    Very honest, very humble, be determined and I hope each day forward is as pain free as they can be.

    If you’re anything like your sister (and she tells me you are a much, much better version of her, her words not mine) you’ll be strong minded and a fighter.

    Look forward to your next post, unfortunately in the worst possible of circumstances.

    Keep smiling, and keep creating memories.

    Take care, Andrew

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  27. Keep fighting a positive attitude helps to keep you strong. I am a cancer survivor and I send you my best wishes and positive thoughts x

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  28. So very sad, life can be very cruel: you have an amazing attitude & I’m a firm believer in positive thinking so stay strong and positive and you WILL beat this. New treatments surface everyday and I have every faith that you will have the future you dream of and deserve.
    If you have a just giving page, please give details & I will donate: I will also repost on my FB page. You will be in my thoughts & prayers, God Bless
    Jan xx

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    1. Wow, Jan, thank you so much for your support. Have you joined my Facebook page here: https://www.facebook.com/pages/Inside-My-Head/921770437853201?ref=hl
      I am determined to keep the faith and make a real difference while I can! My friend Toni is doing a charity sky dive in aid of the Brain Tumour Research Campaign (my chosen charity as detailed in my second blog post). Her Just Giving Page is here: https://www.justgiving.com/Toni-Mcleodinsidemyheadanna/?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Toni-Mcleodinsidemyheadanna&utm_campaign=pfp-share-mobile
      I would be delighted for any donation to her fundraising efforts….more from all of my friends, family and myself are to follow! 🙂
      Thank you once again and hope to hear from you soon! xxx

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  29. Anna, you won’t remember me, but I remember you from York College and of course your amazing Mum. My brother had a brain tumour and my brother in law lives with one ( my b.i.l. was diagnosed 20 years ago and is still going strong) so I have a little understanding of your position. I remember you as such a strong character and I know you will fight this.
    Thinking of you and Linda
    Bridget

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  30. Oh Anna. You can do anything with the right attitude, and I believe you will. People defy the odds all the time, every day. Every minute even. Who’s to say you won’t be next on the list of miracles, right?

    If you ever feel down and out, or even just want someone to talk to: My email address has just been sent to you, I’m free any time – and I’d love to hear from you.

    Keep smiling, beautiful.

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  31. go for it Anna give that Trev some stick girl. I do not know you but I’m so imprest by your positive state of mind Anna. Stay focused on beating it and stay strong you have my respect girl . Please keep blogging 😄👍 x

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  32. hey! I was diagnosed with exactly the same tumor as you (weirdly also studied languages at uni) I was given just months, 4 years later I’m still classed as terminal but I’m not planning on dying anytime soon. Never give up on getting better, try all the treatments even when it’s tenuous they’ll do anything. My brain is a weird thing and surprises my doctors regularly 😃

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  33. Oh by the way you only have to go 1 year without a seizure to get your license back, but I’ve never bothered as my reactions aren’t as good as they used to be, I’d be quite dangerous on the road I’m sure !

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  34. Hi Anna,

    I’m so sorry to hear your story. I am also studying at the University of Portsmouth although I had to leave my life here throughout my second year of my degree and my first year of masters as my dad was also diagnosed with a brain tumour 6 years ago. His tumour was described as part of his brain and couldn’t be identified as a certain type of tumour in particular. However, after two very difficult operations to try and remove it, he is pretty much living a normal life now! His chances of getting through it were given very low possibilities and we can’t believe how lucky we are. I hope his story can give you even more positivity and strength, you already sound very strong. Keep up the fight and I wish you all the best.

    Kirsten

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  35. your a truly amazing woman and wish u all the best brought a tear t my eye reading this as we lost my mum nearly 2.1/2 yes ago. mum had a grade 4 glioblastoma. she had 2 fits at the age of 57 n they diagnosed her as bn epileptic cos nothing showed up on brain scan. she then started falling over n loss of memory in the nov n bn sick. jan had another scan n a large tumour showed mum had an op n passed away 8months later. do very hard. like u was an inspiration t life. the only advise I can say if ur having a good day during ur treatment go do something never wait for tomorrow x

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  36. My niece, who is now in her forties, was disgnosed with an inoperable brain tumour when she was about 30. She is still working every day at her job as a doctor in the USA. My very best wishes and hopes to you Anna Louise.

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