No More Photos: Passing thoughts from Anna’s mum…

By Linda Swabey

I mentioned to Vic the other day that I would write a ‘blog’ for Inside my Head, I knew from the minute I thought it and said it I would struggle.

Vic said it would be nice to do it as everyone is probably bored of reading what she has to say…… as if!! Unlike my two amazing daughters, the written word doesn’t come easily to me. Vic’s advice was just put down what comes into your head; well, that’s where my problem begins. Everything comes into my head as disjointed bits of information which have no sense of connectivity whatsoever. So, I’ll give it a try anyway and hope I don’t drive you all crazy. By the way, if I do, Vic I’m sure will return with the next blog. What would I do without her!! xxx

As anyone reading this will know, Anna died in September 2016 and we’ll be coming up to her 30th birthday in July and the ‘5 year’ anniversary of her death in September. All relevant numbers which we mark, but everyday since she died has been a ‘number’. I’ve just noticed that number begins with the word ‘numb’ which is how I’d describe myself at certain times. Funny how things like that suddenly jump out at you.

COPING WITH GRIEF

I’ve read and listened to bereavement advice about how to cope with grief, how it’s different for everyone, how you have to give yourself time, how you have to focus on all the happy memories of your loved one, how you have to live your life to the full in memory of the person you’ve lost, how to take each day as it comes and not to beat yourself up if you have a sad day, how you will eventually move on. Well, I try, and I’ll never stop trying to live ……… almost finished the sentence there as that is so true, you do have to try and live, some days you just have to try and breathe. It hurts and I know it will always hurt. The pain of losing anyone you love is so difficult to describe but losing a child is a pain I wouldn’t wish on anyone.

There are many phrases used to describe losing a child – ‘The wrong order of things’, ‘I’d give up my own life’, ‘no parent should have to bury a child’, ‘I’d take her place in a heartbeat’ and they’re all true, but it still doesn’t describe the intense pain and heartache endured every minute of every day. Anna has left a huge void in our lives, all our lives. She was an incredible human being with an enormous amount of strength and courage, and I find myself tapping into that to keep me from falling apart.

I am so fortunate to have a very loving family around me who are all dealing with their own grief as well as mine! I’ve tried to be strong for them and I do hope I haven’t put too much pressure on them. As a family we talk about Anna all the time and that has been quite natural to us all. I haven’t wanted Anna’s battle with her illness and subsequent death and our ongoing commitment to raise awareness and funds for research into brain tumours, to overshadow their lives, their achievements and make them feel as if they’re in the background. They certainly are not, they are in my life and in my dreams and hope for an amazing future for them all. I understand that the next generation, my great granddaughter, Heidi Anna, will live her life not having met Anna, but I know her mum, Amber, will be able to share lovely memories with her as she grows into another beautiful, strong and caring young lady.

Something funny has just popped into my head, I have a Cousin Lesley, who by the way has been my rock and I love her dearly; she was talking about my mum, Aunty Gladys, to her son James and he suddenly asked who she was. Well! Les was hopping mad that he didn’t remember her until she realised he was born 3 months after she died! The reason I mention this is the fact that I do struggle with the fact that Anna will be unknown to the next generation of our family. It scares me; I don’t want her to be forgotten, I want her to be talked about, I want her life to have meant something to us all. I’m crying now so I can’t see my screen……. Time for a little break xxxx

PART2:

I wish I could dream of Anna; it just hasn’t happened for me. I kiss her photo and talk to her each evening before I go to sleep and the first thing I do when I wake. I have come close in my dreams, thinking she’s in front of me with her long blond hair, and she turns, only for it to be another member of the family. I suppose it could be a way of helping you to cope with the pain, I don’t know. I’ve spoken to others who have lost their child and it isn’t necessarily the case for everyone. Perhaps I’m too desperate and needing it too much. I can look at photos and smile, but I do struggle to watch recordings of Anna speaking, moving, singing and laughing. It breaks my heart but I’m hoping one day it will be a huge comfort to sit and spend time watching her on the screen.

NO MORE PHOTOS:

The reason for the title ‘No more photos’ is because of a thought I had recently which nearly floored me. I’m not a regular contributor to Facebook, I just like to keep in touch with the family and see all the photos for birthdays and celebrations, but I suddenly came to realise that we would only have a limited number of photos for Anna. How silly is that!! It’s obvious, but why did it suddenly hit me and feel like such a tragedy. We have hundreds and hundreds of photos, videos etc but we’re unable to add to the collection.

It really is silly things like this that suddenly come out of the blue and knock you back. I’m sure there’ll be other things to come and I know I’ll never be ready for it, I don’t think you can be or someone would have written a manual by now. Just a word of warning, make sure you treasure your photos, they are so important. I know I’m very old fashioned and a bit of a technophobe, well more than a bit!! I still print my photographs, I love seeing them, handling them, I feel so much closer to Anna in a printed photo than looking at a photo on my phone; strange I know. I gave a ‘photobook’of ‘Heidi Anna’s first year’, as a Christmas present to Amber and Morgan. I loved it, I hope they did too. I’m hoping to continue with it as a regular gift for many years to come; we have to hold on to our memories.

WHAT DO WE DO WITH HER:

I did warn you this blog would be random thoughts popping into my head – Anna’s ashes. We still have them at home. We did come very close to scattering them in 2019 but it’s my fault we didn’t go ahead. We’ve had many conversations as a family about what to do, internment in a plot or scattering the ashes in a relevant place, discussing all the pro’s and cons involved with each suggestion.

We eventually came to a decision to scatter Anna’s ashes on the beach at Holy Island. Keith and I love Holy Island, our first visit took place just after Anna had been diagnosed; we found a lot of comfort from the peacefulness, serenity and remoteness of the Island. We talked it over with the family and we all decided to spend a few days in the area to see if we all agreed on the location. It’s really important to us that the children and grandchildren agreed as they would be revisiting for a long time to come. All agreed and we planned it, only for me to back out at the last minute. I was unable to let her go, to say what seemed to me to be a final ‘goodbye’. Again, a very silly reaction from me and I really can’t explain the reasoning to you, I can’t even explain it to myself. I have such an amazing family that they all agreed to wait until I feel ready. How I feel at the momentis that I want to keep her with me until it’s my time to go and then Anna and I can be scattered at the same time! I do feel very selfish and I know it isn’t solely my decision to make, they should all have the opportunity visit a place where they can remember their daughter, sister, aunty, niece, and to visit a special place to spend time with Anna. I’m really hoping this year could be the right time…… watch this space. I know Anna wouldn’t want to stay in a cupboard!! Bless her heart.

AND THEN THERE WAS COVID

I feel unable to write this blog without mentioning Covid-19. The pandemic has changed all our lives forever, whether you’ve suffered or are still suffering from the disease or whether, tragically, you have lost someone you love. I struggle to comprehend the pain of losing a loved one to Covid, being unable to sit by their side, to offer love and comfort and to hold their hand and be with them at the end. We had the enormous privilege of being with Anna at the end and my thoughts go out to anyone who has lost a loved one and was unable to be with them.

I also think about how we would have coped if Anna’s illness had happened during this pandemic. We attended all her hospital appointments for scans, radiotherapy, chemotherapy, operations and visits to Consultants; nothing was delayed, she had the best possible care and treatment which prolonged her life from an initial prognosis of 3 months to 20 months. It’s unthinkable to me how we would have coped if treatment had been delayed at any stage.

BRAIN TUMOURS ARE STILL HERE!

Brain Tumours are still around as are all cancers, I just hope a diagnosis and delayed treatment doesn’t come too late for some. We still, as a family, involve ourselves in fundraising, albeit, not so much in the current climate. It’s been heart-warming to see the various high profile fundraising which has taken place during the pandemic and I’m amazed at people’s generosity during these difficult times. However, some charities are fighting for the depleted ‘charity funding’ available. Brain Tumour Research still needs as much money to continue to fund their ongoing research into finding a cure. As soon as we’re able to do so, we will be holding a charity event to boost the fund and I hope some of you will be able to attend or if not, be able to help with a small donation to Anna’s Just Giving Page for BTRC.

LIFE GOES ON…

…it most certainly does. A different life in many ways than the one I’d imagined . My family are amazing and as I’ve said before, I really couldn’t imagine living my life without their love and support. I’m proud of them all and how they continue day after day to live their lives to the full. I know Anna would want that for them and she really would have ‘told them off’, in her own style, (she had a way with words!) if they had moped around and not just ‘got on with it’. Her last words to me were ‘Don’t be sad mum’ – well, Anna, I am, but not all the time. I’m trying every day to be as strong as you were. By the way, you would have loved Heidi Anna to bits – Great Aunty Anna xxxx

I’ll finish now and I hope you’ll forgive an old lady’s ramblings xx

Stay safe everyone and if you can bear reading more of my random thoughts, I’ll write again soon xx

Have a happy and healthy 2021 xxx

What would Anna do?

So we are fast approaching 16th September again… the end of Year 2 without Anna..

And do you know what I’ve figured out..? It genuinely doesn’t get any easier! In fact it gets worse..

Having spent the first 12 months experiencing all the ‘firsts without her’ like Christmas, birthdays, anniversaries etc in what feels like a blur, I’ve discovered that the second ones are worse! You actually ‘feel’ those.

The numbness goes and is replaced with a continual loop of wondering what we would’ve been doing to celebrate Anna’s birthday last month, or what plans we’d have been making for Christmas, or how proud she’d have been of her niece and nephews at their milestone ages. Or what we would’ve been planning for my 40th! 🙈

And I think we were lucky in a way that Anna’s story was so high profile (though at times I selfishly wished it wasn’t). I think it helped our family greatly through the early days. It allowed us to share our memories, pictures of her, videos, achievements.. It was a continual reminder that although she was so unfairly taken from us, she left a mark on the world that we will forever be proud of.

But as time progresses and we’re all just busy muddling through, trying to find our new normal, we share less and internalise more. People stop asking if you’re ok and don’t realise that much of our day to day is still consumed with loss. Decisions are made with a new perspective, feelings are amplified, and the future looks alien. I live in a world (my world) that I don’t know anymore. I’m still learning to live alongside my grief. I’m not saying this for sympathy by the way, it’s more an expression of how life is, warts and all. Hoping some of you can relate in some way…

And I don’t know whether this is just me, but I try not to talk about Anna all the time for fear of making people feel uncomfortable. I love to talk about her, share stories and anecdotes.. let’s face it, there were plenty and she was one funny girl!! Yet I stop myself, especially at work. I’m a hairdresser and spend all day talking to clients, but have found myself sharing a story or two then having to explain that my crazy, funny, life-loving sister is no longer here. Awkward! (To quote the girl herself!)

And I feel like the grim reaper at times too. I would love to be able to talk with families and friends of brain tumour sufferers about our experiences, but I shy away from it because I feel like I’m just over here with the sister who died from hers! Brain tumour prognoses vary so much, but the worrisome, uncertain, whirlpool world that those affected are plunged into is the same, regardless of diagnosis, treatment options and long-term prognosis. So on that note if anyone would like to reach out for a chat about their experiences, or can recommend any Facebook groups I can access to be able to share my experience, I would be open to this! Thank you muchly.

And really, after all that, my continual thought process and mindset remains at ‘what would Anna do?’

What would she do..? Think ‘f&kc it’, wear the ears and crack on!

I feel like I’ve recreated her as the epitome of wisdom and common sense in my head when I think this (which, by the way, she most certainly wasn’t! Think more ‘Miranda’ and you’re there…); but really what I’m asking myself is this…

‘…if my sister could be as positive and proactive as she was during her final months of life, then is what I’m stressing about really worth it?’

Usually the answer is NO! And then I try and move on (singing Let It Go, Frozen style, very quietly to myself, smiling while I remember the moment during Anna’s final days when I sat with her singing this song. She knew all the words, I only knew three…)

This year we have chosen to spend the dreaded day doing what I love and what Anna would’ve been in her element with! And that’s a day making people feel good! My salon, Lox of Love in Newton Aycliffe, Co. Durham, will be open for a full 24 hours, from 12 noon on 15th September until 12 noon on 16th offering blow dry’s, pin ups, hints and tips on hairstyling, tutorials and more! ALL funds raised will go towards Anna’s growing total raised for Brain Tumour Research Campaign, which by the way is now at a staggering £131,000 and climbing! For those of you wanting to continue supporting us and keeping Anna’s legacy alive, you can book your appointment through Facebook or call the salon on 01325 327362. Or as many of you aren’t local to us and can’t be with us on the day you are more than welcome to pop a donation on to Anna’s usual justgiving page. No pressure of course! I’d be just as grateful for a simple repost across your own social media so that we can continue to share Anna’s journey with anyone who might need the inspiration.

As always I would like to express my thanks to you all for continuing to follow Anna’s page. We’ve been quiet of late and I hope my ramblings explain why. Though I also hope I haven’t come across as maudlin or melancholy. My aim really was to be open and honest about my thoughts in the hope that it strikes a chord with others in a similar boat. I feel incredibly grateful to be here, trying to make the most of it and aiming to live my best life to compensate in some very, very tiny way for the grim and incomprehensible fact that Anna can’t..

Keep smiling, Anna would!!

Victoria 😊 xxx

Forever sisters 💕

Walk with us in Anna’s memory…

As most of you know, it has (somehow!) almost been a year since we lost our girl. And we wanted to mark the day by inviting you all to join us on the afternoon of Saturday 16th September 2017 to walk the Great Aycliffe Way in Anna's memory.

Anna touched the lives of so many people, so even if your connection with her was purely through her blog, we invite you to join us.

Fundraising, though still as vital as always, is optional on this day and is secondary to our goal, which is simply to walk on and remember Anna with love and laughter, in exactly the way she would've wanted. If you wish to join us, and we genuinely welcome everyone, young and old and anywhere in between, all we ask is this:

1. Get in touch to let us know you'll be there to walk with us. (Contact us through the Inside My Head fb page, or via email to Victoria@loxoflove.co.uk) This is to help us gain an idea of numbers and to let us know to wait for you before we start! Don't want anyone running behind us to catch up (or getting lost!)
2. Wear something bright and cheery on the day! And literally anything goes! Anna always embraced fun and individuality so, while we ask, for your own comfort and safety, that you remember sensible shoes (some boots aren't made for walking!), you can pretty much wear whatever you see fit to mark the day.
3. Meet us on the car park of the Cobblers Hall pub, Newton Aycliffe from 1.30pm and we will begin our walk at 2pm. Our walk is approximately 5 miles (gentle terrain so no need to panic!) and not intended to be challenging in any way. We estimate a maximum of 2 hours to complete our walk and we finish where we started, at the pub!
4. We invite you all to join us afterwards at the Cobblers Hall pub for drinks. So even if you are unable to join us for our walk, you are welcome to raise a glass with us afterwards.
5. Bring your children, bring your dog, bring banners, balloons or just yourself.. We simply walk on for Anna.
6. And lastly, if you would like to make a donation or raise sponsorship for the event, we ask that all donations are made either directly to Anna's Justgiving page (which currently sits at a whopping £117k!) or in cash on the day and we will add it to her total on your behalf. Remember ALL donations go to Brain Tumour Research Campaign.

So it is really that simple… We invite you all to help us make, what will always be, an incredibly difficult day for Anna's family and friends, into a day full of love and laughter so that we all remember our beautiful and brave girl just the way she would've wanted.

And if Anna is with us on the day, here's hoping she remembers to order sunshine!

Hope to see you all there! I'll be the one pulling Enid out if some insanely muddy puddle somewhere – she always manages to find one wherever we walk! No wonder she and Anna had such a bond! Have a little peak at this video I found from Summer 2016. It sums up everything about Anna.. Full of life, full of fun and totally on the same wavelength as her crazy springer spaniel!

Victoria xx

If you have any questions about the day, contact us via Facebook or email (victoria@loxoflove.co.uk).

If you are unable to join us and wish to make a donation to Brain Tumour Research Campaign in memory of Anna, you can do so here.

This day will always belong to her…

Birthday’s are a funny thing… Some people place a lot of emphasis on them, others are a little more laid back and understated in their approach… Anna was always the enthusiast for any and all of our family birthdays, my approach being more the latter. Anna would’ve been 26 today and I know I speak for the whole family when I say that these past few weeks have been hard leading up to this day.

Today I am at work, keeping busy and mostly just getting through the day, but this evening we will be enjoying a lovely meal at Anna’s favourite local place to eat, Woodham Golf Club.  These were last minute plans, suggested by my better half, as none of us really new whether we should be celebrating, mourning or just letting the day pass by.  Anna loved to eat… here… 🙂 and we felt it was a fitting, intimate way for us all to feel closer to her today.

We should, and will, always celebrate her life in the smallest and biggest of ways every single day; in how we live, the choices we make, the things we remember and stories we share.  We miss Anna every day.  Every single day is a harsh reminder that the life and soul of our family is a little less vibrant now.  But for some reason, her birthday is hurting us all just that little bit more.  But we cannot let this day pass by, living in our own solitary bubbles of grief.  She would be the first to tell us all to get a grip!

In the short time Anna was with us, she made a massive impact on the world, and therefore this day will always belong to her.  I’ve promised myself I’ll do better next year, and truly celebrate the life of the person I miss so much. Watch this space Anna!

As for us and what we have been doing to continue Anna’s legacy… We have been so grateful to our friends and family for continuing to grow Anna’s fundraising total.  A charity car wash and Coast to Coast bike rides within the last couple of months alone.  We are truly grateful for Anna’s relentless army of supporters who continue to raise funds for Brain Tumour Research Campaign and will always be thankful.  You can view Anna’s running total here.

Last week, Anna’s dad visited the research centre at Hammersmith Hospital and placed a tile in Anna’s memory on the Wall of Hope at the Brain Tumour Research Centre of Excellence at Imperial College, London, which we were incredibly proud of (read more). We were also very grateful to Helen Beckett for inviting us to present an award at a school in South Shields that Anna visited a couple of times to talk to the young people about her story.  The award was presented to the student who had overcome diversity and difficult times, which we felt was a truly fitting tribute to our brave girl.

Our next milestone will be September 16th… A year since Anna died…

We will be celebrating Anna’s life on that day by organising a walk in her memory.  Anyone wishing to join Anna’s Army to remember her, celebrate her life and to raise a few more pennies for Brain Tumour Research Campaign, there will be more details to follow over the coming weeks on her Facebook page, Inside My Head.

But for now I will say a tearful and wistful Happy 26th Birthday to my baby sister.  This is your day sis, and I’ll order a chocolate fudge cake just for you! 

V x 

Post 36: The Trouble With Grief…

What do you do when someone you love dies? Someone you assumed would always be there for the whole of your lifetime… someone whose death upsets the natural order that we all live by….?

It’s tempting to become bitter, cynical and even a little hateful at the world, at people who cause hurt and upset to others, at religion, politics… I remind myself that this thought cycle is a potential downward spiral to a life of ugliness, what ifs and general unfulfillment. But I can see how it can be comforting in some ways to hold on to the indignant and self-righteous questions like ‘why is life so unfair?’… ‘what is wrong with this world?’… ‘if there was even a god, why would they allow this to happen?’… ‘what’s the point of it all?’

For some, this is potentially a natural train of thought, the way they approach life, even prior to the loss of a loved one (these people particularly frustrate me), for others it’s just a way of trying to make sense of the loss.

The flip side of this would be to embrace the positives, such as holding on to the memories you are lucky enough to have, feeling thankful to have shared your life with that person, providing support and comfort to those who also lost and are left behind.  In a lot of ways this is much harder than giving in to the negatives.

I sit somewhere in between. I’ve questioned why.. what for.. whose fault is this.. could we have done anything different.. why is that person alive and healthy when my sister isn’t.. blah blah.. And I’ve also thought long and hard about the purpose of it all. We have to find a reason, a purpose for things, to be able to make sense of why we do the things we do.

My favourite question, the one I try and live by, is ‘what would Anna have done?’ Because for someone who was faced with the finality of their life at such a young age, and who managed to rally her troops to behave in the way we all did, and help her to reach her incredible fundraising target of £100k, then she’s someone whose opinion will be forever worth considering.

So with that in mind, as well as a little therapy, some medication, my love for my job, my family and reigniting my love/hate relationship with the gym, I feel a little less lost. Most days..

Of course there are always the times when I get unexpectedly struck by our loss, and it hits hardest from the things you don’t see coming. A comment, an image, an unexpected reminder of the smallest kind… But we’ve grown used to these. I know they will never go away. And they all become part and parcel of remembering and continuing to love that person even though they’re gone.

And somewhere along the way we have all started to see the positives in it all. The point, the reason, the purpose. We were lucky to have had Anna with us for as long as we did, we were lucky to have witnessed and taken lead from her bravery and courage, we were lucky to have not seen Anna lose too much of who she was at the end, we were lucky that we got to say goodbye, and we were lucky that she positively affected so many people in the way that she did, providing comfort to others who needed it along the way.

Hearing the devastating news of the recent terrorism in Manchester brings home just how lucky we were. Anna didn’t go out one day and never come home, we got our goodbye. We were lucky. So you see, it’s all about perspective. Well that’s what I’m learning anyway. Trying to make sense of the senseless.

I even take comfort from the robins and butterflies that seem to appear far more frequently than ever before. I like to believe they’re visits from Anna and the family we have lost. My nan, grandad, aunty Betty, Pete, grandma, grandpa.. Even the dogs.. I like to believe they’re altogether somewhere and I take comfort from that. I haven’t found god, I don’t believe in a lot of things, so for those of you who know me, this is probably totally out of character, but grief changes people, and for me I hope it’s for the better.

Of course we have the added honour of continuing where Anna left her fight, which I think we’ve all taken some comfort in. I’m determined to keep her legacy alive and to support the charity that meant so much to her.

And I strongly believe that her story, as tragic as it is uplifting, should be told. So I am therefore making tentative steps towards writing a book in case I start to forget the little things that made our last couple of years with her so special (and funny.. she was always funny). So any help would be gratefully received! I’ve never written a book before (even though my dissertation felt like one!) so I’m a little out of my comfort zone!

Somehow it has been just over 8 months since Anna passed away. I genuinely don’t know how that time has passed. I’m just travelling back up north from a lovely, much-needed week with some of my family in Cornwall where I’ve had a lot of time to reflect, relax and remember, and so for the first time in months I felt like I had something to say. I hope I haven’t bored you all!!

Just some positive food for thought and the mantras that Anna tried to live by ❤️

yes please!

Anna would’ve loved this one! She’d have sent it with the caption ‘I hate it when this happens!’

Just some of the memes Anna and I have or would have shared..

I promise my next post (very belated) will be about the charity ball we held in March and what our next fundraising plans are.  But for now I’ll leave you with what I hope wasn’t too melancholy a rambling and some food for thought in that we should all try and see the positives in life (as much a reminder for me as it is for everyone else!) 🙂

Much love

Victoria xx

Post 35: One hour at a time…

It has been 3 months and 27 days since Anna passed away..  118 days… 2832 hours… 169,920 minutes… And it still doesn’t seem real most of the time.  It has taken me until now to write this, after several prompts from Mum and a final word with myself.  Mostly because I wasn’t sure what to say, and also because I couldn’t be sure that what I do say will sound anything other than maudlin and melancholy, and that is NOT what I want.

It’s hard when people ask how you are… What do you say?

“I’m OK thank you”?

“I’m well”?

“I’m having a terrible day”?

The honest answer I always want to give people is “I don’t know”.  I don’t know how I am.  Good sometimes, OK others, and downright terrible at times.  It can change on an hourly basis.  I think my other half thinks he’s living with Jekyll and Hyde at the minute!

I think I am speaking on behalf of all of Anna’s close family when I say that.  It’s not just me who feels like life is happening around them.  We have good days and bad days (or should I say good hours and bad hours!).  We continue to share plenty of laughs but are definitely considering buying shares in Kleenex for the amount of tears we shed.  Though Mum said that Dad continues to buy the cheap tissues that are like sandpaper, which we know Anna would be laughing at! He’s always been a bit of a spendthrift (not the word Anna would choose ;-)), and yes he still owns a pair of trainers that he bought before Anna was born!!

Christmas was the marker we were all dreading.  Anna was always the jolly one at Christmas.  I’m the biggest scrooge going, my brother the biggest cynic, mum likes to keep things simple and low-key (doesn’t like the mess!), and dad doesn’t realise it’s Christmas day until someone presents him with a Christmas hat to wear when he wakes up!  Anna was like Buddy the Elf… She would start to get excited for Christmas from the previous Boxing Day! She was always the one who was great with the kids while I stood on the sidelines and watched (and drank the Buck’s Fizz because someone had to!).   Hence why we knew that our first one without her was going to be doubly tough. But we made it through, relatively unscathed, and even Enid (Anna’s gorgeous Springer) managed the day without pulling my Christmas tree down or licking the Christmas cake (yes this did happen the previous year…).

Enid has been our little saviour. She lives with Mum and Dad but we’ve all taken it in turns to look after her, and even though I curse Anna every time Enid runs through the house with muddy paws (I told Anna not to get a springer spaniel – they never. Ever. Get tired. Ever.), I think she gives us all a little feeling that Anna is still with us.  She’s part of our coping strategy I think.  Other coping strategies include talking to Anna’s photo, which Mum does every morning and every night (apparently there’s a lot of swearing, but I think that’s Anna’s potty mouth wearing off on her), watching old video footage of us as kids (mostly cringing at the haircuts but it brings back lots of happy memories), and we talk about her a lot.

We all keep reminding ourselves that Anna would’ve been the first one to tell us to get our backsides out of bed and get on with things. ‘It is what it is’ she would no doubt say.  She was always worried about how we would all cope when she died, but actually we have taken our cue from her.  She was diagnosed with a brain tumour at just 23 years old, yet still managed to make her last 20 months some of the best of her life. She lived, she loved and she laughed in the face of her awful prognosis, so who are we to mope about.

As a family we have all committed to continuing where Anna left off with her fundraising for Brain Tumour Research Campaign, and we are so grateful to the people who have helped keep her legacy going so far.  Our amazing friend and supporter Sarah (the superhuman lady who ran the multiple marathons and cycled half way across Europe for Anna’s cause last year) held a charity band night in York which we attended, and Anna’s school friend Grace organised a Christmas concert, both raising in excess of £500. Our family friend Sandra, who had lovingly baked Anna and Andy’s wedding cake that was sadly never to be, sold off some of the cake to raise £90 for Anna’s cause; and  our cousin Holly, her boyfriend James and their friend Lowrey ran a marathon, raising over £2000.  These are just the ones that spring to mind, and we know that there were many more singular donations, one of which came from our Great-Uncle Alan who was sadly too unwell to attend Anna’s funeral, and has since passed away, but not before donating £1000 towards brain tumour research in memory of Anna.  All of these amazing fundraising efforts and donations have grown Anna’s combined total to a huge £106k!!!!

It was always our intention to arrange another ball after the success of our Cinderella Ball in May 2015.  Anna was in her element organising everything and we talked at length about what our next one would be like.  And even though the main lady isn’t here to crack the whip and oversee everything, we are determined to make our next one a huge success.  So here’s a little heads up for those of you wanting to attend or donate raffle/auction prizes for our ‘Midnight in Paris’ Ball to be held at the end of March.  It will be in County Durham with dates/times/venue/ticket prices to be confirmed within the next week.  Our last charity ball raised over £5000 as we had some truly amazing raffle and auction prizes on offer, and some incredibly generous and supportive guests.  We are hoping that this year’s prizes will be just as fantastic and that we can raise as much as we can for research into the terrible disease that took our beautiful Anna.  So if anyone would like to donate prizes for raffle/auction on the night we would be most grateful and you can do so by contacting linda@loxoflove.co.uk.

Lastly, I just wanted to say a huge thank you to all of our family and friends who have supported us through the past few months, and who continue to do so.  The hardest thing for us is trying to adjust to life without Anna.  I have a million screenshots and saved pictures that I would’ve sent to her by now for us to laugh at, so I’m really missing that one person I can send all my stupid stuff to.  I don’t think most people would get half the jokes that Anna and I howled laughing at… It’s a sister thing…

Thank you again to you all and don’t forget our charity ball tickets will be on sale very soon!

From a very lost big sister,

Victoria xxx

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.

 

 

 

POST 32: VLOG 2

Catch up with what has been going on in my life by listening to my ramblings here!

Please also find a small selection (carefully selected, may I add) of photos from my hen weekend 😀

 

POST 31: BELATED VLOG

HELLO EVERYONE!!!

As I am super late with this blog, I decided to do it in video form instead!

Watch it here:

Lots of love,

A x