20. Dear Anna,

It has been a year! 

I loathe that I can remember 16th September 2016 so vividly. I was awoken by the loudest clap of Thunder I can recall hearing in recent years, one that made Ruby howl (never happens) so I went and got her into bed with me, snuggling her shaking body to comfort her, and in some ways comfort me. I went back to sleep and when I woke a few hours later,  I knew something was different in the world, and then Auntie J called…..

I spent the day celebrating your zest for life. I reveled in the beautiful surroundings I live in, the joy of friendships and a rain shower of sycamore seeds spinning like helicopter rotors as they fell to the ground. I purchased a plant that day, a beautiful deep red Cala Lily, it’s life cycle hasn’t quite brought another flower in time for today, but it lives on. Just as you do in the hearts of those who were privileged enough to know you, even for a second, through the wonderful words of your sister who is doing an incredible job of continuing your blog, and through the hard work that they put into making sure your story doesn’t end.

I’ve spoken many times about how you inspire me every day Anna, even before I knew about Trev there was still an Anna influence in my life. I remember you saying once that you’ve done more living in the time since Trev has been around than you believed you would have done without him. This struck a chord with me. For a long time, I had felt in a state of stasis with my life. I wasn’t happy with the way my Diabetes care was going, I was still searching for that elusive ability to love yourself unconditionally and, I think it’s fair to say, I was just coasting – albeit really well because not that many people knew how I was feeling overall. I found myself almost afraid of going after the life I wanted, the life I’d dreamed of since I was a little girl, for fear that it might not work out, or be as I’d hoped.

With your updates reminding me that life is for living, and showing me how incredible it can be when you really make that choice, I worked on myself. I began a blog about my Type 1 Diabetes which lead me to a group of fellow people with Diabetes, a support network the like of which I couldn’t have dreamt up in a million years. This helped me learn more about how my Diabetes should be cared for, not just by HCPs, but by me too. You helped me get over some of the bitterness I felt about having to impersonate a vital organ all the time. I also took my Reiki first degree which has helped me to connect with myself so I no longer felt adrift. I started to acknowledge that I was actually OK alone, that I enjoy my own company and so naturally, one day someone else would too. I started living, and I was doing it for me, but you took the fear out of me taking that step you exquisite girl. (And now I have to live with a boy!!!!)

There are so many factors that lead the path we take through this life, often we’re redirected and we don’t understand why. I, as I’m sure many others have, spent a long time asking “Why Anna” and trying to bargain with every deity I believed had the compassion to spare you. It didn’t take long before I realised that there aren’t many people in this world who can turn lemons into lemonade the way you can! It takes a true saint of a person to raise awareness the way you did, not just of brain tumours but of the research going on, the work of an amazing charity and above all; the reality of what it’s like to live inside your head during all this. The work you did to reach your ever-increasing fundraising target is second to none, even on days when you felt so unwell. And alongside all of this, you made sure to make each day one that counted, one that not only you but your loved ones would remember. Now, I still occasionally ask “Why Anna”  but it’s mostly been replaced with “Thank You for Anna”. 

And to you, beautiful friend; your light will never fade, my children will know you, and their children too. I will always share the inspiration you gave me and I will always keep your equally exquisite family in my heart and in my thoughts. 

Thank You, Anna, for being my friend and for bringing something wonderful into the lives of not just me, but everyone who knew you. You’re missed and celebrated daily in equal measure – just not always in heels with a glass of something bubbly!

With Love always,

Niki
xXx

 

To learn more about Anna’s life, and the continuing work of BTRC and Anna’s family, please visit Anna’s Blog

Today Anna’s family have planned a memory walk, if you’re able to join them I’m sure they’d love to meet you and tell you more about Anna. I’d love to hear how you’ve remembered people you’ve loved and lost, feel free to drop me a line or comment below.

 

https://videopress.com/embed/NbfUOqEt?hd=0&autoPlay=0&permalink=0&loop=0

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 […]

via Walk with us in Anna’s memory… — Anna Swabey: Inside My Head

10. Denying the need to Say Goodbye…

Foreword: Whilst it is my intention to discuss the grieving process in “stages”, trying to write this has made me realise that  the “stages” of grief are intertwined with each other in their own special relationship. I will write about this in a little more detail, but as you read, remember that for some, not all of the “stages” are needed or followed when grieving and they may occur in random orders, or even more than once. It’s all completely natural, my first tip is thus:

 

Tip:

If you’re aware where the emotions are coming from, go with them. Its the best way to process what is happening.

 

I’ve known for over a year now that I’d be saying goodbye to Anna sooner than any of us should be saying it. It was blindingly obvious that Anna was dying: her diagnosis was a terminal one after all. The key word here though is blindingly. I was so blinded by the bright lights of hope that her prognosis could be defied and she’d have more than 3 years with us, that I developed a tunnel vision that wouldn’t allow the inevitable to enter my field of vision. I took no time to grieve the friend who wasn’t terminally ill when I heard about ‘Trev’, just as I’ve taken no time to grieve my life without Diabetes. As with most situations in my life, I have a tendency to just quietly get on with things, with what I need to do…..a falteringly British quality, that perhaps occasionally masks the symptoms of our emotional needs; in this case, denial.

 

I’m finding this really hard – I didn’t and I don’t want to think of her as going or gone….I still believed, hoped, prayed and screamed at the universe that she’d pull through this, that it was just taking her a little longer to recover from her surgery on 9th August, that she’d be able to marry Andy and they would have many years together. Maybe that was delusional, maybe it was unrealistic; but that was the only thought process my mind would allow. It just seems so unfair! Unfair.. a word that does the rounds often, especially during times of illness or grief. It’s a feeling that is inevitable when faced with something you don’t want to believe. If something is unfair, then there has been an injustice, and if there has been an injustice…..there can be an appeal and it won’t be true anymore. People often talk to me about my T1 diagnosis being so unfair, or about it being unfair that there are terrible people in the world and it’s always the good ones that get the horrid things happen to them. But doesn’t that all just further the denial of the situation?

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When I heard that Anna’s condition had deteriorated, I went into some sort of autopilot. I put the pedal to the floor harder than Lewis revs his engine when Nico’s next to him on the grid and went full throttle in sharing Anna’s message. Every time I logged into social media I asked people to donate to her JustGiving page, begged people to share her blog and check out her Twitter and Facebook, implored them to send her healing energy and show support. I suspect this was in part under the misguided belief and hope that it would make a difference to what was happening to her, that it would somehow save her and buy her more time. More than anything though, I needed to feel like I was doing something to help, the logic to that being that as long as I was doing something to help, then it wasn’t happening at all.

sand-bury-head-hereI also had other types of sand to bury my head in, getting the house ready for a friend coming to stay turned into some kind of major renovation. I cleaned from top to bottom, had some major sort outs resulting in a visit to the tip or two and revived the grout on both the bathroom and kitchen tiles. Then came the weekend, Amber came to stay, we met some of the friends we’ve made in the GB Diabetes Online Community in person at the T1D London (set up by Bri & Ewelina) event. Then we met up with Laura, who is somewhat responsible for my discovering the #DOC, and had a lovely picnic a stones throw from where Anna lived and worked in Portsmouth – with the Spinnaker Tower in view. We talked about her, every single person I spoke to that weekend. They all asked about Anna, having taken her to their hearts: I was proud to have a friend who had such an inspiring reach, I was sad that she might never know it and I continued to believe that she might. Then the weekend was over – no more sand. The reality was stark, it was painful and so I slept to perpetuate the avoidance, “shouting” Anna’s message from the rooftops in my waking moments and pretty much only checking social media to see how Anna was doing. I walked with Ruby, I banished any thoughts about what was happening, they weren’t welcome and I wasn’t prepared to acknowledge them. They remained unprocessed. I existed on probably one small meal a day, copious cups of tea, maybe a bottle of fizzy water  (which is a perfectly normal beverage, thank you very much) and nowhere near enough restful sleep.

It wasn’t just what was happening to Anna that I was in denial of during this time, my Diabetes took a mammoth back seat;

What happened to my Diabetes that was “different”?:
* I ended up having more hypo’s than usual. I can trace the low bg’s directly to my denial stage, based on the increased level of activity and reduced food intake.
* In addition, there is an inevitable stress response at any time of high emotion, even when we’re not acknowledging that emotion; I’ve not really noticed how this affects my BGs before, but during this time, my sensitivity seemed to increase, the amount of activity possibly a big contributor.

How did I react to this emotionally?:
*Despite my own lack of interest in anything that wasn’t spreading Anna’s message, having to “bother” with my Diabetes was so far from my mind, it was risky. Having so many low BG’s was alien for me, particularly as someone who’s BGs err on the side of high despite her best efforts. It became something else to deny, so I barely ate, because then I wouldn’t need insulin and the risk of Hypoglycaemia would decrease….
*To be completely honest, I was so irritated that I had to pay attention to myself, it felt wrong and selfish when compared to what my friend and her family were going through, that fingerprick testing was as minimal as my food intake, at one point I had a run of 2 tests a day!

What did I do to overcome this?:
* In the frustration of spending so much time feeling so out of control of my Diabetes, at a time when I wanted to focus my thoughts on my friend and her family, a moment of clarity that felt somewhat angelically ‘forced’, brought me to a complete standstill. I needed to rein this in before it became a problem, because if my diabetes knocked me off my feet; how could I help Anna? That old cliché of “You need to keep your strength up” absolutely applied.* To help me to help myself, I took stock. I made a list of what I was neglecting and what I needed to do to stay as well as possible – physically and emotionally.
* I needed to address my lack of testing, not knowing what my blood glucose levels are over the course of the day can be incredibly detrimental to both my physical and mental health, but I didn’t want to fingerprick, so what could I do? I whacked in a Libre sensor! (#LibsToTheRescue). This clever little device meant that I still needed to “engage” with my blood glucose levels, but because I could do it with the mere wave of my meter, I was more inclined to do it. Our brains don’t know we have Diabetes, and hypo awareness needs maintenance, I find regularly treating with glucose at 4.3 or below helps enormously. In addition, the Libre meant that, thanks to the time lag between sensor and capillary testing, I could anticipate if I needed to eat to prevent a low BG result.
* Next up, I was using all this energy, but it wasn’t being sufficiently fuelled. The last thing I wanted to do was traipse around a supermarket buying food; let alone have to prepare meals. So I raided my freezer and cupboards and, with a few ingredients purchased; I made stew! It was perfect, maybe not for the weather, which was still being incredibly kind for the most part, but in terms of something filling, easy, nutritious and there. I even had some unused takeaway containers I’d brought for a picnic, which meant I could portion the stew out, including the carb content of each meal. If you consider that slow cooking takes minimal effort, I already had the containers and working out the carb content was quite straightforward using Cook & Count; in total I spent roughly an hour and a half on something I didn’t want to be doing, but something that would pay dividends.
* All I then needed to do, was utilise all these things I’d put in place. Living alone, it’s easy for me to neglect to eat or sleep at sensible times; if at all and the animals aren’t particularly helpful. It was, as it always is, down to me. I keep lots of to do lists that seem to grow before the tasks get ticked off, so I chose to go digital. I created reminders in the calendar on my phone. They were easy to ignore at first, but eventually it became a game; could I complete the task before the reminder ‘ping’…turns out I’m a little more competitive than I ever admit to.
* Essentially, I used my Diabetes as another tool in my toolbox of denial. Which can’t be a bad thing, and is almost certainly what my amazing friend would have wanted.

leaving-denial

 

 

IMAGES COURTESY OF GOOGLE IMAGES

 

9: An Introduction to…Saying Goodbye.

When I enter “Diabetes and Grief” into google, I am met with many results comparing a diabetes diagnosis to the stages of grief. Links to Blogs about the loss of a life without injections, guides about going through the motions as you mourn the death of your functioning pancreas and the ability to eat without a thought, scholarly articles linking the psychological and physiological impact of a diagnosis. I will be reading all of these, I’m not entirely sure I’ve grieved my non diabetic life; yet I suspect it is something we all need to do more than once during our lifetime with Diabetes. However, when I typed those three words into google on this occasion, it wasn’t my life before diabetes that I needed grief guidance on.

I’ve experienced loss in my life, permanent, semi permanent, expected and unexpected; sometimes you lose touch with people, other times you lose people who’ve touched you. Recently I wrote about my exquisite friend Anna Swabey, sadly, shortly after publishing the post, I heard that Anna’s condition had drastically deteriorated and she was being kept comfortable, surrounded by her family & fiancé. Following my Aunt’s passing late last year, I understood what this meant; Anna was coming to the end of her time with us. This devastated me! My aunt had told me that someone is assessed as being “at the end of their days”, when it was believed they would not survive beyond 11 days; Anna held on for 13.

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Anna Louise Swabey 25.07.1991 – 16.09.2016

I felt both a struggle and a gratitude for the updates from Anna’s family during those 13 days, they provided both a comfort and a sadness, some posts warmed my heart and gave me hope, others felt like they were preparing us for what was to come. I marvelled at the strength of this amazing family unit, particularly taking the time to share with us their experience of what was happening; even if that meant taking moments away from what was happening. I suspect it fulfilled a need to do something at a time when that calling could not be easily answered, the one thing everyone who knows & loves Anna wanted to do, was to take Trev on for her, to give her time to marry Andy & build their life together, to see her fundraising efforts rewarded by meeting her target & seeing the promise of more funding into research come to fruition. Sometimes it felt a little voyeuristic, but it also felt right that this part of Anna’s journey be shared. Aside from raising funds and awareness, Anna wanted Inside My Head to be an honest account of what living with a brain tumour was like, unfortunately that also had to include the unhappy bits….and the devastatingly unbearable bits. I kept a journal during this time, mindful of how affected I was and am, by this; emotionally, physically…Diabetically. I questioned whether I should share this, how much I should share. Reading through what I’d written, I felt completely lost with the need to address which tense, parts of this should be in, choosing to focus on the Anna that will be with us always… but in the spirit of my beautiful friend, if by sharing this I can help my fellow diabuddies with the effects of grief on their Diabetes then I’ve done her a bit proud. But I hope this can help others beyond that too, after all; Loss is something everyone experiences….

My google search did tell me that (as I suspect most of us know), there are commonly 5 stages of grief; the Kübler-Ross model.

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I once heard someone describe grief as “a multifaceted response to death” and as such, I’ve decided the best way to write about this, is with a “multifaceted approach”. It’s a heavy subject, it’s an emotive one, it’s something I’m still going through – and I’m not sure if tears and a macbook are very good friends. This post is an introduction for the posts to follow, it offers a little back story and it’s enabling me to organise my thoughts and feelings to do this sensitive subject justice.

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You can read more about Anna’s journey on her blog, and also donate to her just giving page here https://www.justgiving.com/fundraising/InsideMyHead

The world wide web provides lots of wonderful resources on bereavement and grief, some that have proved valuable to me are listed below; click to visit their sites.

  • Much Loved – The tribute charity. Provides a list of support agencies that work with different types of loss.
  • Macmillan Cancer Support – Always an invaluable resource, I don’t know a single person whose life hasn’t been impacted by cancer. The work of Macmillan to support those people makes the biggest difference.
  • Marie Curie – Similarly to Macmillan, the work of this charity makes a huge difference.
  • Dr Kate Granger – I began following Kate’s story on twitter (@grangerkate) a few months before she died in July. Reading her blogs and tweets about dying were a mammoth source of comfort to me. Her husband, @PointonChris is continuing her #hellomynameis legacy.

Before I sign off, I would like to send my utmost appreciation to those from the #GBDOC who helped to share Anna’s story following my last post.
So many of you took her to your hearts and welcomed her into our little corner of the universe, and I know she was so very grateful, as am I.
Nx

IMAGES COURTESY OF GOOGLE IMAGES AND INSIDE MY HEAD/FACEBOOK

 

 

Exquisite Humans – Part 1

Inspired by a pancreatically challenged nerd (Diabetes Geek); and having spent some time reflecting on the humans who have an impact on my life in some way; I’m going to write a series of blogs about these people; who can either be described as Saints (for putting up with me) or somewhat loopy (for putting up with me).

The first, EXQUISITE human is the very reason I finally started the Discombobulated Diabetic, and she probably doesn’t even realise it. (I do also have to credit a couple of others, I haven’t forgotten, and I never will). Many conversations about writing and what to write about were had, but I can say with absolute certainty, that without reading the 30 odd posts written by mon ami; I would not have had the courage to allow my fingers to dance across my keyboard.

Who is this person you ask? Well grab a brew and let me enlighten you.

Introducing, Anna Louise Swabey.

Anna & Ruby

Pictured with Ruby in 2012

Anna stumbled into our family somewhere in the early millennium. We’re a mostly inclusive family and we do love “new blood”, well I just adored Anna immediately, deciding that I would simply have to adopt her so that this bright, funny, kind, considerate young lady could be in my world forever. She fit in with our madness pretty quickly and added to it where others would shy away. There is not a single member of our family that would say they don’t adore Anna, and I would lay down my life on the fact that this is a true statement for anyone that’s had the opportunity to meet her. Anna, always able to hold her own against my cheeky uncles and join in with the various antics of hilarity that would ensue when the clan gathered, endeared herself to us more and more over time. I talk about us being an inclusive family, but Anna always helped me feel more included. With my depression and GAD, I sometimes find it really difficult to even go to family events – as with any family, not everyone gets along or understands each other all the time – knowing I’d have my buddy there almost always ensured my attendance.

The day my little sister got married wasn’t the easiest day for me. It was bound to be emotional anyway, but having recently come out of a relationship with the man I thought I was going to have babies and forever with, on top of everyone asking me if I was bothered about not being a bridesmaid (for 3 years!!!), feeling a little bit on the outside looking in and not forgetting the fear of the inevitable “when are you going to get married then?” questions; it was always going to be a day where my anxiety and depression would be at battle with me. It was clear there was a group of lovelies in my family determined that I was going to have a good time; Anna played a massive part in that. She would tell me off when I changed out of my ridiculously high heels into ballet pumps; there’s an irony that as a Type 1 diabetic, I was literally up and down all night! She would physically drag me up on the dance floor and keep me up there when it looked like I was heading for a darkened corner, she kept me hydrated and assisted me in maintaining my blood glucose levels (Vodka AND juice), for the duration. Given the amount of Vodka and juice and Kir Royale’s consumed, plus the amount of time I spent outside getting “air” (read: avoiding), it can’t be a surprise that my memory of the wedding reception at least is somewhat hazy; but I haven’t forgotten the effort Anna (and some other quality humans) went to, to ensure I not only had a good time, but felt less alone than I would have done without them on that day. It was the most fantastic wedding, and a blessing to have people look out for me too. As a result, my memories of that day will always be intrinsically linked to my friendship with Anna.

 

This is where a lot of people would begin the next paragraph with, “unfortunately…”;  not me, instead I choose: Such is life, that we lost touch. Anna had finished university and was forging her career and settling herself on a new path. I missed her, I thought of her often and hoped that once she was where she needed to be, our paths would once again cross, but that until then she would know I was always there for her, regardless of the time that passed.

Our paths did cross again, on 16th March 2015. I’d been thinking about Anna and wondering what she was up to in the days leading up to this date, I couldn’t work out why and I equally couldn’t stop the feeling I was meant to be in touch with her, it felt like I was physically being drawn in her direction. I periodically have that happen, quite often I’ll wonder about The Corrs for example, and whether they’re still making music (the combination of loving to sing and Irish heritage mean I love The Corrs, like the swedes apparently love a snowy sauna), within weeks they’ll be promoting a new album…it’s a little bit peculiar. Anyway, back to Anna, I’d seen my parents that day and they had shared some news about her. In that moment, everything fell into place, I understood the pull and the thoughts. The moment I got home I looked Anna up. I found her blog. What I’d been told was true. My heart broke and simultaneously filled with pride.

You see, Anna is dying.

 

The pride came because, despite being told she has a Grade 3 Glioma, Anaplastic Astrocytoma Brain Tumour, and then being told that she had anything from a month to 3 years to live, Anna has made the courageous decision to share each step of her journey, Anna has made the decision to defy her prognosis, she is not taking this lying down and has thrown herself into raising awareness and funds for Brain Tumour Research Campaign. This vibrant young woman, in the face of death is flipping it the bird and saying “Nope, not yet, I have life to do!” I spent a year reading Anna’s blog, devouring each post and using lots of these wonderful words strung together to share her news and encourage (beg) people to read and share her story and donate money to her justgiving page.

Then, earlier this year Anna did something that made me certain that I want to be like her when I grow up (it’s good to have something to aspire to, even as the older person). Anna went to Parliament to speak to MPs as part of a group of 20, following the successful petition started by Maria Lester to get an increase in funding for Brain Tumour Research. To me, almost the pinnacle of her achievements so far in this journey, is that she has actively contributed to affecting change. One day, someone will have the chance to survive a brain tumour like Anna’s, all thanks in part, to this inspirational group of people getting funding increased, more research done, more awareness raised and therefor, symptoms caught early enough to do something about it. Those future people may never know that the names of the people who made that possible include Anna, until they do some research. They will then undoubtedly feel the way us Type 1’s do about Frederick Banting – genuinely grateful that someone cared enough to give time, thought and resources to change something because it wasn’t working.

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Anna visiting Parliament made me realise that each one of us is capable of using our voices, individually and collectively, to affect change and make a positive impact and contribution to the world in which we live. It doesn’t have to be particularly big, you just have to do it and be proud that you did it. I coined a phrase, “When life gives you lemons, do an Anna”. In May 2001, Life gave me a mammoth lemon – Diabetes. 2016 marked 15 years since that bittersweet gift. So using my new found understanding of what “leaving a mark” meant and a determination that if nothing else, Anna would know she affected a change in my life at least, I decided that I was going to begin blogging, no more excuses; the time was now! Since then I’ve found a home in a community of fellow PWD’s, I’ve learnt more about my Diabetes than I realised was possible to learn, found out that I’m not too terrible at engaging with people, I’m an OK writer; but above all, I am proud. I’ve made some amazing new friends, friends I know will read Anna’s story and support me in spreading the word, but I am proud that within those new friends, using the PMA that Anna Louise Swabey inspires; I have affected change, and left a mark.

Anna, I can never thank you enough for being so simply fabulous. I am truly honoured to count you amongst my Exquisite Humans, you’re in excellent company; as you will find out. But for now, know that your influence has left an indelible footprint across the path of my life.

Keep celebrating your Exquisite Humans!

For more information about Anna’s story
Visit her blog: www.annaswabey.wordpress.com
On twitter: @braintumourblog
On Facebook: Inside My Head
Or her justgiving page https://www.justgiving.com/fundraising/InsideMyHead

More information about the work of Brain Tumour Research Campaign can be found at http://www.wayahead-btrc.org

 

If you have been affected by reading this story, please share it to help spread awareness.

You can also see the Trailer for this post here: https://youtu.be/SBahRcTvRks

 

Images copyright Discombobulated Diabetic & courtesy of Google Images