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.

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 7: KEEPING YOU ALL “INSIDE MY HEAD”

Hello, me again! I hope everyone had a wonderful Easter and you have all managed to come out of chocolate comas…I am still struggling to be honest!!! This is not going to be a very long or detailed post today…I just wanted to keep you all “Inside My Head”, as such.

This past couple of weeks or so, I have found it very difficult to control my emotions, and I have been getting quite upset about everything, all hit me like a tonne of bricks. I wanted to tell you all about this, as although I may come across in posts as very tough and strong, EVERYONE has their weak moments. I have more than reassured myself that this is fine, and even probably good for me, and it certainly does not make me any less strong! It is however, quite bizarre, because I find myself getting annoyed at myself after I have cried- It has not made anything better, it gives me even more of a headache, I feel like an idiot and I look like CRAP after I cry as my skin goes all weird!

I am probably not wrong in thinking that there are others out there who have been given the same prognosis as me, who do cry every day, and have not chosen to tackle the news the way I have in general. I tell you what though, the crying thing is tiring and very draining! And I am lucky that overall, I don’t really get too upset about it all…I don’t think I could cope!

I was having a quite in depth conversation with my Mum the other day, and I found myself saying the most bizarre thing: “I have never been happier”. Although I have obviously been given the worst news I could have ever imagined, I really have not ever been so content with my life. I feel like I genuinely have a purpose in life now and I am so determined to make a difference. Three months in to my journey, I have spoken to/met some incredible people, as detailed in my last post, I feel I have turned into a much better person and I certainly have a different outlook on life! My purpose is to use my devastating news to great effect and to help beat brain cancer!

This week in particular has been very busy! I am all about the Cinderella Ball hype at the moment! (Saturday May 2^nd , Wynyard Hall ).

Aside from the fact that I am freaking out as I have put on too much weight and my ball dress looks horrific (I HATE YOU STEROIDS), I have desperately been trying to get all the loose ends tied up before my radiotherapy and chemotherapy starts. I am so lucky to have an amazing network of family, friends, adopted family members, and complete strangers who have been incredible in helping me with this grand task….and I tell you what, it’s shaping up to be a pretty good night if you ask me! The generosity of others has, is, and will continue to absolutely astound me! I can only apologise if I have not been able to/do not have the means to contact you all individually to thank you; but sincerely, from the bottom of my heart: THANK YOU SO MUCH!!!!! Without your help, I would not be in the position to fundraise for this worthy cause.

Now to fill you in on my long day in hospital yesterday…I went to meet with the oncology team at Charing Cross to sign all the paperwork to confirm my agreement to having radiotherapy and chemotherapy, to have my radiotherapy mask fitted, and to have a planning MRI scan for the treatment. Albeit an extremely long and tiring day of waiting around, all was completed, and I am ready to rock ‘n’ roll! The initial meeting filled me in on all the short and long term effects of the treatment; this was a lot to take in and, although I know this is bad to admit, I almost found myself sat there like a nodding dog at times. There are SO many potential side effects that they are obliged to have to let you know about, but really, I need to have the treatment to fight Trev; and that is what will be done, regardless of side effects. I was slightly rude yesterday though, only in a jovial way, I PROMISE; the registrar was explaining long term side effects that would potentially affect me in later life; he was discussing a particular knock on effect for 15-20 years time, and I just burst out and said, “ well, to be honest, I have been told on average I only have three years left to live, so, if I am alive in twenty years time, I will be over the moon and won’t worry too much about these side effects!!!”.

The most difficult part of the day for me was when the subject of fertility arose. When I was first given my prognosis, this was one of the first things that broke my heart, it was never spoken about by doctors, but it was one of the main thoughts that came to the front of my mind; the fact that, potentially with such a short time to live, I wouldn’t be able to have my own family – get married, have children etc. But, if you have been reading my blog from the beginning, I have made it very clear that I am more than determined to MAKE THIS HAPPEN! I became an aunty to Amber when I was only 7 years old and from the first time I held her, I loved looking after children. As detailed previously, I have 5 niece/nephews and have therefore always grown up having babies/children around me. I have always known I have wanted to be a Mum; so this is quite a raw subject for me I am afraid. Yesterday it was explained to me that my chemotherapy drug, Temozolomide, may cause infertility, or make it hard to conceive. I find myself in such a weird position; obviously, right now, I am in no position to consider having a baby! Even before my prognosis, I had always said I probably wouldn’t plan to have children until I am about 30 years old and I am happy with my career etc. and that feeling probably has not changed as such; if I can defy my prognosis, I will still want to be successful, and bring children into the world when I feel the time is right. The discussion yesterday however was hinting towards the fact of, well even if I do live longer than expected, this decision may well then be totally out of my hands. I am completely aware that, unfortunately, through many differing scenarios, many women face the same problem today, and I know I won’t be alone in this worry/upset…but my god, I want to be a Mum SO BAD, and my heart reaches out to those who are in the process of trying to figure out how they are going to do that. Anyway….sorry, got a bit deep there and I cannot waste my time dwelling on something out of my control!

 

Now on to the funny bit of the day and where you can laugh at my photos; the radiotherapy mask fitting! First of all, I was so relieved to come into contact with such lovely ladies working in the radiotherapy department at Charing Cross yesterday, they were genuinely SO lovely and this bodes well for the 6.5 weeks of treatment I will be having there! The process of having the mask fitted itself really was not too bad at all. Felt slightly odd, but nothing I could not handle and nothing that made me feel uncomfortable. After explaining to the lovely ladies that I write this blog, my Dad became chief photographer and took these delightful snaps just for your entertainment:

 

Having sent them to my Mum, she replied saying that I looked like Sunny, Will Smiths robot in the film I Robot; brilliant Mother (yet again 😛 )! The mask was moulded to my face, markers were drawn on, and the mask was left on my face to set into place. All in all, I would say it only felt like I was in the room for a maximum of 20 minutes.

As mentioned, I also had a planning MRI scan yesterday; prime nap time for me! Over the next couple of weeks, my treatment will be planned. Aligning lots of different images, the team will decide how and where to target the radiotherapy so that the most effective course of treatment is given; I still find it all so intriguing!

I have been given a provisional date of Monday 27^th April for commencing my treatment. They have been really accommodating in terms of timings, so provisionally my treatment will be in the afternoons, allowing plenty of time to travel from Hertfordshire each day without it all being too hectic, and in case I get fed up of the Southern life, this will allow me to return to Northern land for the weekends very easily if I am feeling up to it…travel up on the Friday after treatment and return on the Monday morning, giving me 2 whole days travel free!

Well, I actually feel like I have blabbered on more than I was planning too, so I think I will wrap it up!

Next couple of weeks is operation FIT IN MY BALL DRESS, make the most of the time now I am feeling relatively “fine”, organise the ball as much as I can, and get ready to start giving Trev’s butt a good kicking as of the 27^th!

 

I thank you all as ever for your continued support, I really could not do it without you all!

All my love,

Anna

 

 

POST 6: LET’S FACE UP TO IT…

So… it all went to plan and my recovery has been fabulous!!! Yippeeeeee!!!

I have already posted on the Facebook group page about this amazing new equipment, but for those who don’t follow the Inside My Head Facebook group….this may be a fascinating read!

http://www.dailymail.co.uk/health/article-3015974/World-surgeons-spot-brain-tumour-bleeping-pen-Laser-helps-surgeons-tell-difference-healthy-cancerous-tissue.html?ito=social-twitter_mailonline

This probe trial at Imperial is partially funded by Brain Tumour Research Campaign, so it certainly excites me to think with the money we are raising/can raise together, what may come next!

The doctors were really happy with the resection and how my operation went and are more than happy with my speedy recovery! I am hoping that this is a sign of things to come and that my body is more than ready for the fight ahead!

Being completely honest, which I always will be when writing this blog….I am more nervous about this next stage; radiotherapy and chemotherapy! I know, unfortunately SO many people have to go through this kind of treatment, but I have been fortunate enough so far, that other than my seizures and recovering from my 2 operations, I have not really “felt ill” or “looked ill”, yes I have been tired every now again and I have listened to my body telling me this and it has faded reasonably quickly. However, I have been warned that the treatment will more than likely change this, although everyone is an individual, and will therefore react differently. I have been told that the radiotherapy will cause hair loss and tiredness, and the oral chemotherapy tablets may cause sickness. The treatment will be 6 and a half weeks long, Mon-Fri down in London.

As you can probably tell from my photos, my hair is important to me…..I have LOTS of it!! Even when I first found out about my prognosis and the shock of finding out it was terminal…..to me the hair loss was one of my main worries! I know this is pretty shallow in the grand scheme of things, and really should not be at the forefront of my mind…..but as I said, I am a very honest person and the thought of being bald most certainly was right there at the front waving at me! One of the BEST things to have happened to me since writing this blog has been getting to know people who are unfortunately on a similar journey to myself. It is at this point therefore that I simply HAVE to give a special mention to my beautiful, new friend, Charlotte. We are the same age, and have the same prognosis. Charlotte has had her treatment and my lord, she has given me a whole new outlook on losing my hair! To say she rocks a wig is a complete understatement! She looks HOT!!!! Even just receiving a message of support from Charlotte and seeing her photos has made me so much more positive about this next stage for me; and for that, Charlotte, I thank you!!! Getting to know others, just like Charlotte, and the very many other amazingly kind and strong people who have reached out to me since I started sharing my journey, has given me even MORE determination to make a difference!

I have decided I am going to take each radiotherapy session, each day, each week, as it comes. I do not want to rush in and shave all my hair off irrationally. If I lose a lot and having naturally thick hair means that my wig won’t sit as well unless I do shave it all off; then so be it! It’s another test of character for me and I can have the fun of experimenting with different colours/styles that I would never have had the balls to do normally!!! On the plus side for me, my sister is a pretty amazing hairdresser, so I am sure she will sort me out a treat! (Thanks sis!!! 😛 )

As for chemotherapy, I have been told that I may feel sick. I think I am in the frame of mind of preparing myself for the worst, whilst hoping for the best! Potentially for these 6.5 weeks I could be absolutely wiped out, shattered, sick, not want to see or even have the energy to see anyone/do anything. Or I could be okay during the beginning until the levels get higher towards the end of the treatment; or the fighting spirit in me so far may not find it as difficult as they are warning…..nobody knows until they do it!

Looking at it from a logistical angle, it is an emotional time. My treatment is in London; the majority of my family live in County Durham. I will miss them ALL an incredible amount and I am struggling to get my head around the fact that I won’t have my niece, Amber and her ridiculous one liners to keep me smiling day after day 😛 (get your snapchats at the ready, Amb!)! I am very fortunate in the fact that, everyone wants what is best for me and completely respects my decision, I feel a strong connection with the team at Charing Cross and their innovation and passion inspires me and I do not want to be out of their bubble of positivity, as I still truly believe my frame of mind, added to their passion, is helping me fight Trev! In the grand scheme of things, 6.5 weeks is not that long and I know I will have plenty of visitors. Also on my side is the fact that we have a family base in Hertfordshire; plan being, that this becomes my home for this period of time and, dependant on health, we get the train or we travel by car each day into London. I have the weekends available; so putting my ‘positive head’ on, I am hoping at least at the beginning, I can hop on a train back up to the North East. For once, having my family spread all over the country is a huge benefit!!! I will also be closer to my work colleagues in Portsmouth and will hopefully be able to use it as a time to reunite with those amazing ladies, again, health permitting.

I am trying my hardest not to predict the future at the moment, as there is too much uncertainty surrounding how I will feel, what I will want to do etc. so I need to take each day as it comes and go from there.

I am currently awaiting an appointment from the oncology team at Charing Cross to go and have my mask fitted ready to start my radiotherapy treatment.

If you are like me and had no clue what this meant, please view the Cancer Research UK information video below:

I have been told that the mask takes about 2-3 weeks to be made. I have just sat here and watched the video above with my mum….her first comment; “Wow, well there will be a big bit sticking up in the mask for your nose!!”, DELIGHTFUL MOTHER!!! 😛.  So my short term plan…make sure I am listening to my body and resting up when I need to, as my body will still be recovering from surgery, but most importantly, make the most of the next few weeks while I am feeling reasonably fine and dandy!

POST 5: THE LUCK OF THE IRISH…

What a week it has been!

Let’s approach this is a chronological manner, and I will try and fill you in on as much as possible…!

 

So on Sunday 15^th March, I was lucky enough to be invited by Caterpillar (proud sponsors of Leicester Tigers) to watch the LV semi final match at Welford Road against Exeter, within the luxury of corporate hospitality! I felt very very very spoilt and loved every second of it (despite the result!). I took my gorgeous Mother along; it was Mother’s Day after all! (Sorry Dad :P). The week leading up to this game, one of my all time favourite Tigers, England and Lions player, Lewis Moody, had been kind enough to take the time to tweet me and retweet the link to my blog. It just so happened that he was one of the presenters of the SKY Sports TV coverage for this match. After he had finished his duties, I went over to thank him in person for his support on Twitter. What a lovely guy! He asked all about my journey and gave me a big hug and wished me luck for the op on the following Tuesday! Even more exciting….he is keen to get involved in some fundraising events with me in the future….TIGERS LEGEND! He kindly sported a BTRC charity wristband too!

 

So it was then, from Leicester to London! Getting ever nearer……

Monday Morning, we headed to Charing Cross hospital. As I have “difficult veins”, they wanted to ensure they could get a line in. Come the afternoon, I was scheduled to return to Hammersmith Hospital to have another go at taking part in their research trial scan. Due to my veins behaving themselves this time around, I was delighted to be able to take part in this scan. These research trials, can only happen, and therefore things can only be learnt and developed if people volunteer. I will provide all the links to the detail of this particular trial, so if relevant, please do take a moment to consider taking part.

http://www.cancerresearchuk.org/about-cancer/trials/a-study-looking-at-pet-ct-scan-magnetic-resonance-spectroscopy-mrs-brain-tumours

The research team there were SO lovely, empathetic and genuinely grateful that I took the time to take part! To me, it is not even questionable….anything I can do to help with new methods, I will! If I am being totally honest, unlike MRI scans, this scan was almost completely silent – I used the 45 minutes in the scanning machine to have a nice nap and chill out away from the nervous thoughts of what was happening the next day! To top it all off….I was given Oreo biscuits when it was all finished! (cushtyyyy!!)

Then it all began to sink in….back to Charing Cross we went! However, as my bed still wasn’t ready. I saw this as an opportunity to escape and eat! (I had been ‘nil by mouth’ for the day because of the trial scan). Conveniently, there is a Pizza Express across the road from Charing Cross hospital….using my puppy dog eyes, I managed to persuade the parentals that this was perfect timing to go and eat dinner (“the last supper” as I was inappropriately calling it!!!). Chicken pizza it was! I must have looked like a right numpty! 2 canulars in, sticky tracing pads for the op stuck all over my head and scalp….GIVE ME FOOD!!! It was a delightful dinner, and it was very nice to escape from the hospital for half an hour or so. And on our return, my bed was ready! 11 South, K Bay, bed 4. My stomach started to sink a little bit….I knew the time was nearing for my parents to leave so they were ready for the long day tomorrow. It had been suggested several times that I would either be first or second on the list for my operation, so it would be an early start. All my comfy clothes unpacked, that time did come, and emotion hit me quite hard. ONE MORE SLEEP!!!! I said goodnight to them both and got settled in my bed (after playing with the remote for quite a while – hospital perks!) I was so fortunate that K Bay was filled with 2 absolute lovely ladies opposite my bed, who certainly helped take my mind off the nerves that evening. Nikki and Jade, a special thank you to you both. I hope you are continuing to recover well!! Although a late arrival to our bay made me struggle to get to sleep early, all things considered, I did sleep quite well, when I managed to put my phone down and stop reading everyone’s wonderful messages of support!

 

Tuesday 17th March,  I was woken at about 6am! IT’S OPERATION DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Holy mac n’ cheese!

I was given my meds and a sexy lil gown and seductive knee high socks. I made my way to the bathroom and the transformation was complete! (*insert sexy hospital selfies*)

I was told to expect to be seen by one of the anaesthetists soon and that I should expect to be taken to theatre about 8.30/9ish as I was numero uno on the theatre list!

Fortunately my parents arrived about 7.30 ish and were allowed by my bedside (calming my nerves???/I reckon more nervous than me!!!!). 8.30am arrived, and the hard part began…the saying goodbye (although I knew it was not a “goodbye” – it was still awful) I could feel the tears brewing and I could see my parents getting upset too! Nikki and Jade wished me all the best and I tried all the deep breathing techniques I have ever heard of to try and stop myself from becoming a hysterical mess! I kept blowing kisses to my mum and dad and telling them I love them through the glass window. I have never felt so guilty as I did at that moment in time. I knew how helpless they would feel – it was alright for me! – I was heading off for a cushty 4 hour sleep! They would have 6 hours or so of desperate worrying, overthinking and fear.

Theatre number 7! That was my destination. Although I am not a particularly superstitious person….and apart from my date of birth, I have never really had a lucky number….all of a sudden I remember thinking to myself: lucky number 7!!!!!

I was taken into the anaesthetic room within the theatre awaiting the arrival of the second anaesthetist to put me to sleep. This felt like the longest wait EVER! I was lying there, without my glasses on (so blind as a BAT) but could kind of see movement in the theatre ahead through the glass windows in the door. The huge significance of what was about to happen all of a sudden hit me! I started crying my eyes out and if I am honest, I felt like a real idiot! I even found myself apologising to the anaesthetist who was trying to get everything ready as I did not want to be that person! I asked for a tissue and had a word with myself! “Trust your gut, Anna! Everything is going to be fine!!!” The second anaesthetist then arrived and he very quickly said, right, time to get you off to sleep! The last thing I remember was this guy telling me a story about how the tissue I had clenched in my hand from blowing my nose and wiping away my tears would fall out of my hand and that he knew lots of old ladies who always used to have tissues clenched in their hands….I think this happened at least!

That’s me done…..over to my surgical team!

The next thing I remember was feeling very sick when I was coming around….I think I was still in the theatre at this point and was advised to try and hold it down if I could. I then remember being in recovery. Constant observations being taken to ensure I was okay after surgery. What’s my name, What’s my DOB, Where am I? What date is it? Etc. A young guy who was looking after me in recovery was an absolute babe – and I have a serious feeling I absolutely chatted his ear off! I remember asking several times what his name was, because he was so nice and I wanted to make sure his amazing care was acknowledged; he was only learning the ropes on recovery as well! Unfortunately, despite my many attempts…..I cannot remember his name for the life of me! If by any remarkable chance it was you, I thank you so much! You made me feel so comfortable, reassured, calm and like you were my mate! Kevin also popped in to see how I was getting on, he asked me how I felt; I said ROUGH!; He said it would feel like I have a horrific hangover!; I remember saying to him, “What?! That is not fair though….I have had no fun!” I would happily take a horrific hangover if the party has been a top one! I was so worried that my parents would think I was still in theatre as well, and not just chilling in recovery, so I called in a favour! I asked Kevin if he would let my parents know I was okay….not like he is a busy neuro surgeon or anything, is it Anna!?! He said of course, and asked where he would find them; I had no clue and then went on to recite my dad’s mobile number! Kev being the legend he is, of course rang and filled them in! It was nice to know that they would be relieved to hear that I was okay!

Me being my witty self as well :/, I was getting quite bored of the nurses constatntly asking me the orientation questions detailed above, so I decided to mix things up a little bit! When asked what date it was, I decided to respond, saying “Its St. Patrick’s Day, that’s why I am still alive and the operation went so well; I had the luck of the Irish!!!”. They looked at me as if to say “WTF?!” I then felt the need to explain that I was just as weird before the op!!!

To add even more hilarity to this situation….I will fill you in on a little secret: I genuinely had a little Irish leprechaun in my handbag to give me good luck. Anna Doherty I blame you!!! My best friend/twin Anna had visited Dublin a few weeks beforehand and bought me home a little souvenir! As soon as I saw it, I swore I would take him with me into hospital. He bloody worked!!!

Unfortunately, it took a few hours to be moved from recovery back up to the ward, but I can remember seeing my parents and saying I am fine and I cannot even begin to think about tricking you that anything is wrong with me post op….I LOVE YOU!!! Seeing their faces again was so amazing! I was on the same ward, just a post op bay, where you get more regular observations etc. It was all done! I survived! And by the looks of things so far, no problems! My parents said that Kevin had told them he could not have wished for the operation to have gone as well as it did! Roughly 3cm X 4cm of Trev has done one! WOOOOOOOOP! TAKE THAT TREV!!!

I had a card left on my bed side – Nikki one of the lovely ladies I left on K bay that morning, had been discharged and had left me a lovely, thoughtful note wishing me a speedy recovery! The tears started again, and then all of the overwhelming feelings of joy, luck etc. came over me! And I felt so normal! It was bizarre! I just had major brain surgery and yet, i felt, all things considered, fine! I remember my mouth and lips were soooo dry and throat was sore, from having tubes in during the operation. I was desperately searching for my Vaseline pot!!!!

I had to have observations every 30mins for the next 6 hours, so although very very tired, my sleep unfortunately had to keep being disturbed. Wednesday was the worst day to date. I never knew it was possible to feel so ill as I did! I had nausea from the moment i woke up and unfortunately was violently sick the majority of the day. I felt so weak, my head (no surprise) was banging, but being sick had put even more strain on my headache. I had a fever in the night, my chest was tight, and I was seen by a doctor. She decided to run some xrays on my chest and abdomen, to rule out any infection/collapsed lung. Fortunately, my fever calmed down and no problems were highlighted through these XRays.

I was so blessed, my best friend, Anna, and one of my best friends from university, Olivia (an air hostess now living in Abu Dhabi, conveniently had a rescheduled flight landing in London on Thursday Morning) and two of my cousins, Ian and Holly were able to come and visit me in hospital – so this certainly brightened up my days!!!

Once I had got through Wednesday, everything else seemed like a walk in the park! I was seen by the physio on Thursday, and I was able to get out of bed, get the drain out of my head wound, catheter out, I COULD WALK!!! Hallelujah!! This was a massive step forward for me (no pun intended)…being able to sit up and get out of bed made me feel so much better. Lying flat in bed all the time, had made my chest feel really tight and breathing was becoming slightly difficult. It was also not helping the swelling on my face or on my right eye. The more I am upright, the quicker this will fade.

I took about half an hour sat there on my bed observing everyone else on my ward. I actually got quite emotional, one lady was severely struggling with her speech and could not tell the nurses what she wanted etc. She was having to point to letters on a laminated card to spell out what she was trying to say. I sat there feeling so (I know I say this all the time), but genuinely BLESSED! I could not imagine losing the ability to talk and express myself; what a brave lady. I wish her all the best and hope that it may have only been a short term side effect of her operation.

However “well” I was feeling, I knew how important it was to get my rest. I was sleeping the majority of the days away and always felt better after this invaluable rest. The doctors came around again on Friday morning and asked if I felt ready to go home. I just wanted to ensure that I had another day of no sickness. (I could not imagine feeling how I did on Wednesday and not being in hospital). I was visited by the physios again and tackled a flight of stairs – felt like I was bossing this recovery malarkey! Friday evening, albeit quite late on (about 10ish) I was discharged!!!!!

This part of my brain tumour journey was over!

I have an outpatients appointment booked for Thursday 26^th March in the morning, to find out exactly how the operation went, what they have found out (histology report). I will also hear about what they plan to do to Trev next! Boom, let’s keep going!!!

I thought it was a bit stupid travelling all the way back up to County Durham to come back down again on Wednesday night, ready for Thursday morning. So although desperately missing my mad clan back up in the North East, I am chilling out in Hertfordshire this week and by chilling, I mean constantly napping!

So I am getting a few funny looks off people…fortunately, not much of my hair has been shaved off at all (Kevin was true to his word) but I do have a lot of staples in my head, my face is slightly swollen still and I wake up with a bruised eye. But do you know what….I could not care LESS! I am so lucky to have been able to have this operation in the first place, for it to have gone so smoothly, and to have the unconditional support of all my loved ones.

As I was getting slightly more with it, I ventured back on to the Inside My Head Facebook page…..this made me feel even more blessed than I felt post op! The amount of messages I had received over those few days- WOW! I can only apologise that I obviously will not be able to reply to everything all you wonderful people have sent! That Facebook page has now got waaayyy over 2k likes! Furthermore, my JustGiving page target of £1000 had been smashed….I have decided to up this target to £5000 now, I hope I am not being to unrealistic, and I see this as a more long term goal. I cannot thank all of you enough who have already been beyond kind and donated to BTRC! IF you haven’t already….let’s put it this way…It’s amazing to actually type this out, but nearly 30k people have taken time out of their days to read my blog now (WOW WOW WOW), if one sixth of you donated just £1, thats £5000 raised, right there, and that is a hell of a lot of research that can be funded to save lives, just like mine!

POST 4: AHHH HE IS ACTUALLY GOING INSIDE MY HEAD….

As many of you may know if you have read my posts below….I am scheduled to have my brain surgery (partial resection) on Tuesday! Today is Friday….that leaves me with FOUR days until op day (*dramatic music*)

I wanted to post today just to try and get some of my nervous thoughts and energy out of my system and to try and give an insight into some of the worries that are going through my head. I want to use it to vent some of the uncertainty that is all built up inside of me, so then for the next few days I can put all those worries into a little box, pack it away and try to keep myself as busy as possible until Monday when I will be admitted to Charing Cross.

I am very much aware, particularly with the help from the lovely ladies at the Maggie’s Centre at the Freemans Hospital, Newcastle, that there is no point worrying about things that are completely out of my control, as it all just spirals out of control! If you have not come across the work of the Maggie’s Centre before, they are INCREDIBLE!

Built in the grounds of NHS cancer hospitals, Maggie’s Centres are places with professional staff on hand to offer the support people need and there are now 17 centres across the UK. I have now been to a few Brain Tumour specific support groups at the Freemans hospital Centre, and just popped in to relax and have a chat in between hospital appointments at the Centre at Charing Cross. The session I attended last month at the Maggie’s Centre has been able to help me a lot this past week….we spoke about how to deal with uncertainty, of which there has been, and still is A LOT of in my life at the moment. This session was invaluable to me, particularly as I am a complete and utter control freak and I hate not knowing exactly what is going on. Although having had discussions with my “super surgeon”, Kevin O’Neill, I still don’t really exactly know what is going to happen, how much pain I will be in afterwards, how big my scar will be, how much hair they will have to shave off, if there will be any major side effects….the list goes on.

The lovely ladies at the Freeman’s Maggie’s Centre explained how sometimes questioning each and every one of these worries and uncertainties can be detrimental to my positive outlook, because the likelihood is, that I don’t have the answers and these things are completely out of my control. Therefore what it is better and more beneficial to concentrate on, is the things, albeit how small, that I can control. Writing my blog and using this as a means to release my thoughts is in my control, remaining as positive and upbeat as possible is in my control, and making a difference is in my control (with your support of course)….and that is the path I have chosen to follow!

Right, so control freak Anna – let’s use this post to vent my worries:

I think my main worry, that may seem silly to some of you who have had operations under general anaesthetic before, is the thought of not waking up! I have never had general anaesthetic before – my first biopsy operation was awake surgery; I was lightly sedated and had local anaesthetic injected into my scalp. The control freak that I am, I was weirdly quite thankful for being awake, as I knew exactly what was going on, even if I did have to endure the ridiculous noise of the drill :/!! Although the prospect of being awake during brain surgery seemed to freak everyone else out, I am in fact more nervous about being asleep this time around. The operation is due to take about 3-4 hours I have been told and I have been told to expect to be kept in a further 3-4 days to recover.

There are obviously risks, as with any major surgery, which again, if I dwell on would probably drive me insane and lead me to call off the operation all together! The main risk I have been warned of is that I may lose movement or feeling in the left hand side of my body. Currently, this doesn’t worry  me too much – to me, this is a small price to pay to potentially be able to live and spend a few more months/a year/years with the incredible people in my life. It would obviously affect my day to day life for the time I do have left, but I am almost positive this won’t be the case…always trust your gut instincts – see I do listen to you, Mother!

I do, bizarrely, feel very lucky to be in the position I am in, in terms of finding Kevin, and him being keen and confident to operate and partially resect a sizeable chunk of the Trev. Taking this into account, I am quite excited to undergo the surgery and see what kind of a difference, if any, it can make to my progress, future treatment results (i.e radiotherapy), and my prognosis . I am hoping to up the ante on the score card front and it look more like Anna 2 – Trev 0.

Taking all of that out of the picture, and just being completely emotional….I AM SO NERVOUS!! I think it is only hitting me at certain times, on certain days, what on earth has gone on, is going on and what will be happening next week! It really is crazy! I am a bit worried as I haven’t had a breakdown over the past week and a half. Comments and messages I have received off the back of my blog etc have made me shed tears, but mainly because I cannot get over the kindness of my family, friends, blasts from the past, or complete strangers! But an absolute sob, I haven’t had. Although, as I am sure you have got the gist of by now, I am a very positive and strong person, I also believe it is important to be weak at times and have a good cry….although it helps with nothing, changes nothing, everyone needs to have an emotional release to keep you sane! I wonder if one is due to arrive before Tuesday…?!

When I was coming around from my biopsy operation at the beginning of February, I could not control the tears. I was lying in my hospital bed, with either my Mum or Dad in the seat beside me so I could grasp on to their hand (they took shifts so their hand didn’t end up falling off! ). I would be lying there, head throbbing from the surgery, but perfectly quiet and calm, eyes shut, and the next minute, tears would be streaming down my face! And this would then have a domino effect on the parent in the chair! The people on my ward must have thought we were absolute nutters! The emotion just crept up on me each time and came from absolutely nowhere. At least this time I am prepared for the tears to turn up without warning!

Speaking of my parents, I am fortunate, particularly with my surgery being in London, that they are both going to be able to be with me the whole of next week. I hate, more than anything, trying to imagine myself in their shoes, particularly when I am wheeled away on my bed and during the 3-4 hours when I am in surgery. The worry they must and will experience is horrible to think of. Furthermore, with my surgery being in London, the remainder of my family will not be able to visit me in hospital due to us all living up in the North East. Again, I don’t like thinking about what they will be going through and how helpless they will feel being so far away. Although I know these scenarios are not my fault and are completely out of my control, I almost feel like I am inflicting these horrible feelings on to the ones I love the most and a feeling of guilt creeps up on me when I think about it too much

On a lighter note, if anyone has any suggestions for how I can wind up my loved ones when I do come out of surgery fine, I would appreciate any ideas on a postcard!…. I was thinking of, as I heard it has happened…to pretend that I can only speak a foreign language (leaning towards mandarin as they would have no clue if what I was saying is right anyway – and I was learning mandarin at work before my diagnosis!).

If I have to think of the worst scenario, and if anything is to go completely wrong (again, I know it won’t – gut feelings are the best), I just hope that I am still in a position, health wise, to be able to keep raising awareness and money for brain tumours and BTRC. If I am not, PLEASE continue to help this cause so that in the future, nobody has to even contemplate processing these types of thoughts that are going through my head right now.

Thank you for lending me your ears today, and I will be sure to make my sister, Victoria, (would hate to see my parents have a go at uploading anything on here) updates you all when I have come around from my operation.

I have a general Just Giving Page now, so for those who feel so inclined….Even if it just a £ 1 donation, I will be so grateful!!!!

DONATE HERE

POST 3: EXCITING UPDATES!

So folks, news just in…..well several pieces of news in fact:

• My operation is scheduled for Tuesday 17th March. I will be admitted in to Charing Cross hospital on Monday 16th March, following on from my scans this coming Monday (9th March). So best offers being taken for my Usher tickets that got delivered today! (*SOBS*)!

OH MY GOODNESS! It’s all feeling real now! I wanted to let you all know as soon as possible, but I am planning on writing a more detailed blog post in the lead up to the operation, at some point next week.

• Had some fab news yesterday also, my Facebook page for Inside my head, reached over 1000 likes in under one week – INCREDIBLE!  If you are not already following my journey on there also, please do.

• So my amazing friend Toni McLeod is doing a sky dive in aid of my chosen charity Brain Tumour Research Campaign. What a BABE!!!!

She has set herself the target of raising £800, but I think you amazing people can help us smash that target and smash Trev right in the face ! Please give as much or as little as you possibly can…..now it’s time to start making a REAL difference – let’s beat brain cancer!!!!!!!

Here’s her Just Giving page where you can donate.

• And last, but CERTAINLY not least: You are all cordially invited to our Cinderella’s Charity Ball!

The ball will take place on Saturday, May 2nd at Wynyard Hall, Stockton on Tees, TS22 5NF. With the help of my family’s company, Lox of Love Ltd, we are organising Cinderella’s Charity Ball at Wynyard Hall to raise funds for the Brain Tumour Research Campaign. This is a charity (as you may have already read) headed up by my fantastic neuro consultant, Kevin O’Neill, who, along with his dedicated team of neuro specialists, is doing all he can to give me the best prognosis possible. All funds raised will go to raising awareness of brain cancer (often called the Cinderella Cancer for being overlooked and under-researched) and in researching brain tumours in the hope of improving outcomes for all.

Our Cinderella Ball is a black tie event, including a 3 course meal, reception drinks, an auction, raffle, entertainment, dancing and more and we look forward to seeing you all there.

Tickets are priced at £45.00 (+ booking fee) and can be purchased here: http://www.eventbrite.co.uk/e/cinderellas-charity-ball-tickets-16046388179?aff=affiliate1

10 people per table on the evening – If you would like to book a full table of 10 please contact us directly, ideally through Facebook – link to the event is here. Any further questions, do not hesitate to ask!

Apologies for bombarding you with information…..but I ask you to help me out with everything we have going on! Without your support, I cannot achieve my goal of making a difference.

Thank you as ever!

All my love, Anna xxx

POST 2: The Journey Starts Here…

I need to start my second post by saying the biggest thank you I have ever said in my life! The support I have received since my blog went live on Sunday has been well and truly overwhelming! I could not be more positive about my situation or more determined to make a difference than I am right now, and that is all down to each and every one of you who has taken time out of your busy lives (I know you aren’t all bums like me and don’t have to go to work! :p) to read and share my blog, and to message me directly or on my Facebook or Twitter pages with your lovely words of support and encouragement. Let’s keep it up and raise as much awareness as possible!

Since Sunday, a lot has happened and I am very excited to share all my news with you all!

As mentioned in my first post, I was told that due to the intrinsic nature of my Grade 3 Anaplastic Astrocytoma, my brain tumour was inoperable. Due to the horrific and incomprehensible time scale I was given on receiving my biopsy results, I was fortunate enough to be able to seek a second opinion, on recommendation from a family friend, from Mr Kevin O’Neill, Consultant neurosurgeon at Charing Cross hospital, part of the Imperial College Healthcare NHS Trust.

All I can say is, WOW! And how can I sign up to the Kevin O’Neill fan club?! Within the space of a one hour meeting, chatting with Kevin about my journey to date and telling him about me (surprised the meeting didn’t last hours and hours, as I am very good at talking about myself!!), he managed to completely flip reverse my outlook on my prognosis. He did not change or disagree necessarily with anything I had already been told, but as a pioneer in Brain Tumour Research, he simply exuded such passion in this field, and on a more personal level, an apparent passion to want to help me; as an individual.  At only 23 years old, Kevin was adamant that everything should be thrown at me; a young and healthy person is obviously a better receptor of treatments etc. than elderly patients. What was the biggest breakthrough in this meeting for me, was when Kevin said he would be keen to operate!

My tumour can never be fully removed, but Kevin is keen to carry out a procedure called partial reception.  Part of my tumour covers both sides of my brain, which means operating on that particular area would have far too high a risk. The majority however is on the front, right side of my brain, and is much more accessible.

Although operating, partial resection, debulking (I have heard many names for the procedure) won’t make a difference to the ultimate outcome, after consideration, it certainly seems worth it to me! Debulking this part of my tumour will mean that whatever is left in my head will have more room to grow in the future, and therefore I hope I will be at less risk of seizures.  There is a small chance I may lose some movement on my left hand side of my body – but that, to me, is nothing.  The part of Trev (yes that’s right, I really did name my tumour!) that is taken out, can then be sent to Kevin’s research team to grow and test on, trying differing treatments on it to see what it reacts well/badly too.  Several other alternative treatments were also mentioned, alongside the more generic Chemo and Radio therapy treatments.

I came out of that meeting delighted and Kevin gave me a hug and high five, saying your fight starts here! Even if my prognosis has not changed, knowing someone is on your side and ready to fight with you; and furthermore, knowing that the person who will be conducting your brain operation and leading your treatment plan, is actually incredible. Team Kevin all the way!

I was in London again on Monday of this week. I had more MRI scans, and met with Kevin again. My perfusion study MRI was not successful on Monday and the images were not satisfactory, I was therefore invited back to have this scan conducted again next Monday as part of a research trial, at Hammersmith Hospital; also part of the Imperial College Healthcare. I then expressed to Kevin that, although coping very well with it all and remaining extremely positive, the frustration of not knowing when everything was going to be happening was driving me insane. For my whole life, not just since my brain tumour diagnosis, I was, am and always will be, a control freak; and a massive one at that. I hate not knowing my plans, timings and arrangements for anything and everything! Not knowing roughly when my partial resection would be taking place meant I couldn’t make plans and I was constantly on edge. Kevin calmly said however, well it will either be the day following your scans at Hammersmith; i.e NEXT TUESDAY! Or the following Tuesday! OH MY GOD!

So I am now in the position of being ridiculously excited to be having a major brain operation! As soon as I receive confirmation of that date, I will keep you all in the loop. I am praying that it is the 10^th March, so I do not have to travel back down from the North East again the following week, and, if it is on the 17^th March…..I have tickets to see Usher in Newcastle on the 18^th – GUTTED! (I jest, I jest  – I will be grateful for any day; but if it is the 17^th – get in touch if you want 2 X Usher tickets!!!).

The Brain Tumour Research Campaign

To add to the success of my London trip I was able to meet with the founder of my chosen charity. As mentioned on Inside My Head Facebook Page, I will be fundraising for The Brain Tumour Research Campaign. BTRC was established by Wendy Fulcher after the loss of her dear husband John to a brain tumour. BTRC is headed by Mr Kevin O’Neill (my legendary consultant) and provides the conduit for the charity’s fundraising activities, as well as contributing to and complementing the expertise of the scientific research team. BTRC draws together clinicians and academics from Imperial College, London and collaborates with other UK and international research centres. I cannot wait to be able to maintain, help to reach, and further extend their achievements.

So I met with Wendy on Monday – what a delightful lady! This charity really means a lot to me and will fund the research of Kevin and his team to help establish better and more effective treatments for this ridiculously underfunded cancer. Their team of researchers, in the John Fulcher Molecular Neuro-Oncology Laboratory at Hammersmith Hospital, will be the people who will be studying the samples of my tumour, to be resected during my operation. Without the money raised by BTRC, this would not be possible!

I ask you to give generously wherever possible, on a selfish level I hope that with all the money we can hopefully raise together, potentially a treatment can be found to help me; on a much greater and long term scale, think of how much this charity has already achieved and therefore, just how much potential they have to make even more of a difference! – EXCITING!

I will be organising many fundraising events, along with all the efforts of my amazing friends and family.  I will update you all on our efforts as and when and encourage you all to get involved…. already in the pipe line is a Charity Ball at Wynyard Hall, Tees Valley so watch out for the details of that later this week; my amazing University of Portsmouth Netball ladies are organising a Netball Tournament/Old Girls weekend; my friend Toni will be doing a sponsored sky dive; And I know many of you amazingly kind people have expressed an interest in helping out in any way possible.

I look forward to updating you again very soon!

All my love and thanks as ever,

Anna

POST 1: Life with a Brain Tumour

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

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

Why start a blog?

By writing this blog I hope to achieve 4 things:

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

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

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

Who I was:

• Up until January 9^th 2015, I was living a completely ‘normal’ life (although, if we are being honest, I don’t think anybody would have ever of described me as ‘normal’!)
• I studied Languages and European studies at the University of Portsmouth, and was delighted to graduate with a First Class Honours degree in 2013.
• I have always been a very active person, and have a particular love for netball. My fondest memories from University involve the amazing times I shared with the girls from the University Netball Team.

• Not only have I enjoyed playing sports, I am a keen spectator also. I am a MASSIVE Rugby Union fan, and had a season ticket for Leicester tigers since I was 8 years old. Living down in Portsmouth made it more difficult to get to matches, however the 3 hour drive was always worth it! My parents and I have travelled Europe supporting our team also. My football team is Stoke City, so all in all, when it comes to sport, I am a bit of a lad!
• That isn’t to say however that I am not a girly girl when it comes to fashion, make up, taking “selfies” etc….as I most definitely am!
• I was a very sociable person, a bit of a chatterbox and friends often compared me to my comic idol, Miranda – tall, a bit clumsy, and always getting myself into awkward social situations!
• I have always been very family orientated. I am very close to my parents, my sister, my brother, my niece and my four nephews. The only difficulty being, that as I chose to go to University in Portsmouth, the majority of my family live up in the North East of England.
• I have always been a big kid at heart, and I am obsessed with Disney. My Mum, Sister, my niece and two of my nephews and I went to Disneyland, Florida for two weeks last summer – WOW!

                 

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

         

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

Who I am now:

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

Who I want to be:

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

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