Post 34: When I’m gone…

“I got my ticket for the long way round, two bottles of whiskey for the way… And I sure would like some sweet company, and I’m leaving tomorrow what do you say..?

When I’m gone, when I’m gone… You’re gonna miss me when I’m gone… You’re gonna miss me by my hair, you’re gonna miss me everywhere… You’re gonna miss me when I’m gone…”

The Cup Song, Performed by Anna Kendrick in the film Pitch Perfect… I’ve played this song endlessly for about a year now, in what I thought was preparation for last Friday, 23rd September 201 My baby sister’s funeral.  She always said she wanted this song played at her funeral. Most of us have that one song that we say we’d like played when we go.  This was her song.  I wasn’t prepared…

Anna Louise Swabey  25.07.1991 – 16.09.2016

I wanted to update Anna’s blog following her death on Friday, 16th September 2016 (eleven whole days ago), to continue her journey mostly, but also for us as a family to be able to look back at this and remember the small details that we are likely to forget amongst the blur that has been our lives for the past few weeks.

Anna passed away peacefully at around 4.30am, with our mum and dad by her side.  I last sat with her that night until about 2.30am, sharing the time with our brother, Matt, Anna’s fiancé, Andy, and my partner, Lee, having railroaded mum and dad into getting some very much needed sleep.  We had all been holed up in Anna and Andy’s house for almost two weeks by this point, sharing as much time as we possibly could with her; some lucid, mostly not, but all precious nonetheless.  Despite the impending loss, heartbreak and sadness we were all feeling, we did manage to enjoy our time with Anna and with each other, having not been in the same space together for that length of time since we were kids!

There was a thunder storm on the morning that Anna died.  It continued for hours…  We were waiting to see who was going to be the first to say she went out with a bang!  I still can’t remember which one of us was the first to make the joke (had Anna been there it would’ve been her without a shadow of a doubt!) but we said it anyway, as she knew we would. We took it in turns to sit with her for a few hours before she was taken to the chapel of rest. It was such a peaceful time and, again, something we are very grateful for.

It may seem strange to read but I know I can speak for my family when I say we were lucky to have had the time we did with Anna, and that her tumour progressed in such a way that meant we didn’t lose her sooner than we had to.  Even during her final weeks, Anna was still her usual blunt, funny self.  Brain tumours affect people in so many ways and had her tumour progressed differently or her surgeries not been as successful as they were, the side effects for Anna and for us could have been so very different.  What we all had however, was precious time together where Anna’s strength, bravery and dry wit kept us all going and inspired us to be as strong, brave and equally dry about it all.  It is what it is, as both Anna and I would frequently say.. I think it’s now our family motto!

Anna and Andy were due to marry the day after Anna passed away.  We knew a couple of weeks before, that Anna wouldn’t be well enough for their wedding to go ahead, and we had to make the very tough decision to cancel the wedding plans.  However, we all made a promise to Anna some time ago, that if the wedding didn’t go ahead, we would all go and spend the weekend at the wedding venue in Richmond regardless.  It was such a difficult weekend but a very lovely one also.. We spent time together in the glorious sunshine, had a family meal and sat round the fire sharing memories.  My youngest son Theo pointed at the brightest star and said that it was Anna shining down on us. We all like to think it was.

Anna’s funeral was held at Wear Valley Crematorium on what was to be yet another beautiful day.  Her coffin was white, and her flowers were red, white and green to reflect her beloved Leicester Tigers! Simple, elegant and very Anna… We were amazed at how many people came to pay their respects to our beautiful girl; the room was packed with family and friends from every part of her life.

Andy carried Anna’s coffin, alongside Matt and 3 of our cousins, Ian, James and Johnathan.  We are a very large and very close family, and while we know they were very honoured to be asked, we knew it would be Anna’s choice also.  We chose a humanist minister, Roger McAdam, for the service, who genuinely captured the essence of Anna.  We wanted the service to be a celebration of Anna’s life, and at her request we all wore bright colours.  I read a poem called Sometimes by Frank Brown, her bridesmaids and bridesman shared some beautiful and funny anecdotes, and Anna’s dad, Keith, ended with a moving and uplifting eulogy.  In amongst this were some of Anna’s favourite and most meaningful songs, including Smoke on the Water by Deep Purple (Leicester Tigers opening song), The Cup Song from Pitch Perfect (our favourite film!), The One by Kodaline (Anna and Andy’s first dance at their wedding), Brown Eyed Girl by Van Morrison (this was Anna and her dad’s song),  Ho Hey by Lennon and Maisy (one of Anna’s favourite songs and to be played at her wedding to Andy), and Klingande (Instrumental version) by Jubel (this was played at the Cinderella Charity Ball organised by Anna in May 2015).  Anna and I are very similar in so many ways.. Practical being one of them.. Hence our family choice not to have flowers at the funeral, but instead to request donations to both Brain Tumour Research Campaign and Marie Curie, raising a total in excess of £1200 on the day.

After the service we moved on to Woodham Golf Club in Newton Aycliffe to continue our celebration of Anna’s life, where her nephew, Theo, took a leaf out of Anna’s book and sold BTRC wristbands to the guests.  He is 8 years old and raised £173 in 2 hours! Anna would be so proud.  We asked guests to bring a photograph for our memory board, and to write a few words for our memory tree because we wanted to capture everyone’s own memories of Anna that we can look back on and remind ourselves of how full her life was in just 25 years. Anna’s attitude was to make the most of the time she had rather than dwell on the time she didn’t and we want to always remind ourselves of that.

We are completely humbled by what an impact Anna has had, not only on her family and friends, but on the people she has met in passing, those she knew at different points in her life and even those she simply spoke to through writing her blog.  In just 25 short years Anna has made a difference.  Not only has she shared a very full and happy life with her precious family and friends, but in just 20 months she has reached her fundraising target of £100,000, she has raised awareness of a terribly under-researched, under-funded, but all too common, disease, and has inspired, not only a nation, but people across the world by her bravery, determination and positivity.  What a legacy to leave behind!

With much love and sincere gratitude to everyone who has supported Anna and our family from a very humbled sister,

Victoria xx

For anyone wishing to donate towards Anna’s running total for Brain Tumour Research Campaign you can do so via her Justgiving page.

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.