Post 33: Taking comfort from the little things…

Hi all, many of you may know me by now from hijacking Anna’s Facebook page to update you on her condition, but I am Victoria, Anna’s (much older) sister.  I wanted to write this on Anna’s behalf because, as a family, we all know how important her blog is to her.

Most of you will already know that Anna’s condition deteriorated suddenly on Sunday but I know she would want to share her story with you in a bit more detail than just a few Facebook posts from her far less eloquent sister.  So apologies in advance for the ramblings you’re about to read!

I’ll go back to 27th July when Anna had her last scan.  This was 6 weeks after finishing 14 months of chemotherapy.  With her wedding to Andy coming up we were all hoping for another ‘stable’ scan result to mirror the one we received in January, however this was not to be.  Anna’s results showed a new growth away from her original tumour site.

Not long after her scan Anna started showing signs of struggle, suffering from nausea, vomiting and severe tiredness, which led her surgical consultant at Charing Cross to suggest another surgery; at the very least to perform a biopsy so that we knew what we were dealing with.  This surgery took place on 9th August, and her incredible surgeons removed a plum to small apple-sized mass, which we hoped would relieve a bit of pressure and hopefully give her some more time.  Anna appeared to recover well from the surgery, though not as quickly as her first operation, and was making steady progress at home.

When Anna’s biopsy results came back on 15th August, I remember the phone call vividly.  It was the night before my partner and I were due to go down to London for a few days sightseeing with our boys.  Anna’s call was matter of fact and to the point.  Her biopsy results showed that the tumour had now progressed to a Grade 4.  In all honesty, and in typical Anna style, she was more bothered about how we all felt than what it meant for her.

After receiving the news, life continued relatively normally for us all; wedding plans were still underway, and even though we knew that the new grading of Anna’s tumour meant that it was even more aggressive, we still all thought that she would be well enough to go ahead with her big day.  This was not to be however, and 2 weeks ago we saw a huge change in Anna.  She was very tired, much slower in her movements and lacked her usual gusto (though she was still able to put all of us in our places if she felt we were fussing her too much!).. We visited our family in Stoke for our cousin’s wedding reception, and we are so grateful that she was able to do that.  Our family loves a good get together and this was the last social outing she had, which meant such a lot to all of us.

Since then Anna’s condition has deteriorated dramatically and last Sunday, shortly before she was due to come over for Sunday dinner with the family (she’s a sucker for Yorkshire puddings and Lee, my partner, is a pro at making them!) she took ill.  We had the most horrendous couple of days last Sunday and Monday, as Anna’s deterioration was so sudden, she was sleeping constantly and we truly thought that we wouldn’t get her back from that.  However, we have been privileged to have spent the past few days being able to chat with her briefly, in between her naps, thanks to the amazing care she has received from her district nurse, Heather, and the Marie Curie team, who have given her a concoction of drugs to keep her peaceful and comfortable, yet relatively alert when she has managed any time awake.  Christine, the lovely Macmillan nurse that came to visit us yesterday, described medicine as a bit of an art and she wasn’t wrong!  Anna’s team of nurses have given us time that we didn’t think we would have after her decline last Sunday, and we will be forever grateful for that.

During the past 18 months, we have chatted with Anna on many occasions about what kind of care she would like to receive, and where she wanted to be during her final weeks, and she was always adamant that she wanted to be at home.  So last Sunday when she became very sick we were faced with the difficult decision of whether to let her go to hospital for further scans, tests etc., or to allow her to stay at home where she wanted to be.  As a family, we all felt that staying at home was the right choice to make, assuming that between us we would be responsible for the bulk of her care which, needless to say, we were all more than prepared to do.  We couldn’t have been more mistaken however, and the incredible home care she has received, from district nurses, Marie Curie and Dale Care, has allowed us to spend precious time with Anna, without having to worry about her personal care or medical needs.

I cannot believe how calm and peaceful the past week has been and what an incredible group of people we have been lucky enough to have been in the hands of; starting with Terry, the paramedic who initially came out to us last Sunday, along with Richard and Lynn from Marie Curie, and Dr Dharani, the urgent care GP, whose reassuring presence was such a comfort on a truly distressing day.  Not only have all Anna’s nurses and carers been amazing with her, but they have really taken the time with our family to ensure that we are all looking after ourselves and each other during this most heart-breaking time.

So that’s really all I can update you with for now.  Anna is peaceful in her bed, mostly sleeping.  We have a few lucid moments with her every now and then, and we are so thankful that she is comfortable and relatively pain-free.  We can all take comfort in the fact that Anna is exactly where she wants to be, surrounded by her close family and friends.

I wanted to say, on behalf of Anna’s family, that we are so grateful for the unending support and encouragement you have all shown to Anna (and us!) since her initial diagnosis.  She has faced her illness with positivity, dignity and absolute defiance, and we couldn’t be more proud of our beautiful girl and the way she has touched so many people with her amazing attitude to life, love and the whole heap of crap she has had to contend with since the arrival of Trev!!  We have all taken our cue from Anna throughout her illness and we will continue to do so through the most heart-breaking and difficult time of our lives.  Thank you to you all for reaffirming to us what we already know, that our amazing Anna is one of life’s truly inspiring and incredible human beings.

From a very proud and humbled sister,

Victoria xx

NB Anna’s goal was to reach £100k in her fundraising efforts for Brain Tumour Research Campaign.  Though her own Justgiving page shows a total of around £53k, her combined total with friends, family and army of supporters is closer to £80k, and we are so proud of her, and her fundraisers for raising such an incredible amount.  You can donate to Anna’s Justgiving page here. Any amount to help towards Anna’s target would be gratefully received.

 

 

 

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27 thoughts on “Post 33: Taking comfort from the little things…

  1. Thanks so much for the blog take over, I have been checking in multiple times a day to see how she is. Anna’s blog was one of the first I came across when I started my own cancer blog and her blog has always stood out to me being a similar age. Love to you all and thanks again for the update xxx hope the target gets hit! Xxxx

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  2. Thankyou for the update at this really difficult time for Anna and all the family.
    Anna has been an inspiration to so many . You must be so proud of her .
    Love to you all.

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  3. You are equally as eloquent as your beautiful little sister. I am amazed and humbled by the strength that you have shown in writing this post. I lost a very dear friend to a brain tumour a few years ago so I know some of the pain of the ‘journey’ that you have been travelling as a family. Anna has been very strong throughout this scary time and has written beautifully about the things that have happened to her since her diagnosis. Special thoughts must go out to Andy who has walked alongside Anna and shared his heart with her. My heart aches for you all.

    God bless. x

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  4. Thank you for the update Victoria. I’ve only met your sister twice but have been very moved by her story and I really appreciate that you have taken the time to share this difficult and personal time with us all. My heart goes out to Anna, her family & close friends xxx

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  5. I am sending a beautiful Angel to lay and wrap her soft wings around Anna. I feel so honoured that I have met this beautiful girl via her web page .Your parents must be so proud of Anna and you and thank you for the update.

    Hugs and positive thoughts to that amazing girl.

    Thinking of you all from Sydney Australia.xxxx

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  6. Thanks for the update. I have seen this blog for 2 weeks. You must be so proud of her, she has never surrendered to Trev and never will be. Anna has been an inspiration to me (AAIII). Wish you and your family all the best.

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  7. i’ve just come across Annas blog after reading an article in the newspaper today.

    first of all i want to say how very sorry i am to hear the sad news that Anna has passed away. I’ve only read a few of her posts so far (i plan on reading them all!) and already i feel like i know her, and shes one of my friends.

    shes a true inspiration and if only more people were like her the world would be such a nicer place. it sounds so cliche but its true.

    I guess i just wanted to pass on my condolences and respect.
    If i can help in any way with any fund raising, or awearness than i will do.

    xx

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  8. It is with sad hearts that we at The Mount learned of the untimely loss of Anna Louise Swabey. Members of staff who taught Anna recall her as ‘a true Mountie’ who, as the Quakers say, let her life speak.
    Anna made a real impact during her time at The Mount, and is remembered with respect and great fondness. She was an extremely bright girl; sparky, sporty, fun-loving and outgoing. She had a cheerful nature and was a very helpful and capable girl. She was much-loved and continues to live on in our memories.
    Anna approached her condition with great bravery. I am aware that in a short time she personally raised an incredible amount of money for brain tumour research. Through her blog, she has obviously inspired other sufferers and their families, using her condition to raise awareness in a way that indicates her own inner strength.
    Anna’s family is also fondly remembered at The Mount and, while we extend our sincere condolences for their loss, we remain thankful for her life and the light she brought to The Mount.
    – Adrienne Richmond, Principal, The Mount School

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  9. you don’t know me, but i just stumbled over the guardian article about anna. my heart is breaking. you all seem so lucky to have had a light like ehr in your lives. xx, love from san francisco. /vicky

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  10. I’ve just read on BBC News about your sister’s passing. An absolutely inspiring, beautiful person.

    I am so very sorry for your loss. I hope you’ll take comfort and pride from the fact that her bravery and drive will act as a light for people to follow in the future when faced with this disease.

    RIP Anna.

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  11. We are so sorry to read of Anna’s passing. We have followed her blog for some time now and as a family whose 7 year old son has been fighting a brain tumour battle of his own, we have been inspired by Anna’s spirit, her courage and her tenacity. Rest peacefully Anna.

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  12. I have tears streaming down my face reading this and watching Anna’s vlogs just now, and knowing she has gone on.
    In the US, there is so much discension and discord- with an upcoming presidential election that unfortunately has become so disheartening to bear witness to all the negativity and petty complaining- I am so sorry for your loss and thank you from the bottom of my heart for sharing such a beautiful, terrifying, painfully raw part of all of your lives. Much love to all. I’ll think of you often for the rest of my life. 💞

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  13. Good bye Anna.
    Just read your story from beginning to end.
    My mum was diagnosed with the deadly brain cancer glioblastoma multiforme stage 4 in 2012 and was dead 3 weeks later. Our wonderful mum was ripped away from us in what felt like the blink of an eye. I miss her every day.

    Thank you for sharing your journey with us.
    May heaven await you.
    Phil

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  14. My condolences to your family. We are located in Asheville, North Carolina in the US and 3 years ago we lost our beautiful 5 year old granddaughter, Julia Shaye Israel, to a Grade 3 Anaplastic Astrocytoma in her brainstem. Our thoughts and prayers are with you.

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  15. I’m really sorry that she has deteriorated. I have read her blog for ages now. She is such an inspiring person. We share the same name and I am so proud of the fight she has in her. I also went to Portsmouth university. Thanks for keeping us up to date and I will be thinking of her. Xxx

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