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.14439030_10153719461947331_573556118_o

POST 32: VLOG 2

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

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

 

POST 30: SUPER SARAH!

Now I know I have just posted about the Paris Marathon Mission, however, I truly felt as though this woman deserved a whole post of her own. I simply have to tell you about Sarah Hargreaves…

My Mum used to work with Sarah at York College, a fair few years ago now, but I had never had the pleasure of meeting her myself.

I first came across Sarah shortly after my diagnosis. She contacted me asking if she could run the London Marathon 2015 in aid of BTRC; I, of course, snapped her hand off, and was left dumbfounded how someone who I hadn’t even met would want to do something so kind. I quickly learnt of Sarah’s generous, caring and loving character. In her own words:

I know some amazing people who are brilliant runners.  Some can run a marathon in less than 3 hours; some can run three marathons in three days; some can do an ironman.  Me….well, I’m just a bit of an old bird who happens to like running.  It doesn’t come easy to me.  I have to work very, very hard at it.

When I was at school, I hated cross country but was OK at athletics…but then I discovered smoking, drinking and boys (not necessarily in that order) and any chance of taking up running was long gone.

It took a few more years for me to take it up….and, at the age of 42, I finally kicked the habit (smoking, not men) and was challenged to do the Great North Run by some workmates and raise money for Cancer Research at the same time.

I stopped smoking and started running the same day.

It was a truly awful day.

I managed around half a mile, running behind my friends, calling them as many bad names as I could think of.  When I stopped I was purple.  I felt wretched…but I stuck at it.  I built up my mileage gradually and, a few months later I completed the Great North Run in 2:10 in memory of my brother Simon, who died of cancer in 1999. I was very, very proud.

I came to absolutely love running and from there, built up my mileage to do marathons, of which I’ve now done seven (I think).  It’s not easy.  In fact, it’s bloody hard work.  I have to train hard; very hard.  But I love doing them and continue to fundraise in memory of my lovely brother.

Then, one day last year, when I was at work, I heard about some people fundraising for the Brain Tumour Research Campaign for a woman called Anna…the daughter of a friend, Linda Swabey, who worked at York College a few years before.  I found out that Anna, at the age of 23, had been diagnosed with a terminal brain tumour and, for whatever reason, her story just grabbed me.  It grabbed me so much that I found out more about her charity…and discovered that brain tumours are the biggest cancer killers of people under the age of 40, but receive less than 1% of cancer research spending in the UK. So I decided that I wanted to do my bit to raise more funds for the BTRC and their amazing work in trying to combat this terrible killer.”

 

So yes, this amazing woman contacted me and ran the London Marathon in aid of BTRC after hearing of my story; how kind! Not only that, but she raised a hell of a lot of money in the process also.

Sarah London

We kept in touch and Mum and I kept saying how we would love to head down to York and visit her and many other of my Mum’s former colleagues, however, operations, radiotherapy and chemotherapy seemed to take over our lives.

I was then very cheeky and contacted Sarah about running the Paris Marathon with me, and explained how I was keen to get a whole team together, and she jumped at the chance! Still never having met this lady, I, again was left shocked and very humbled.

This is where I began to learn that Sarah is not just caring, generous and loving, SHE IS AN ABSOLUTE NUTTER!

She contacted me to tell me that she knew she could run a marathon, and really wanted to challenge herself. Her crazy plans then began to fall into place:

April 3rd – Run the Paris Marathon

April 4th – Hop on a bike and begin the 277 mile cycle to Rotterdam

April 10th – Run the Rotterdam Marathon

 

As Sarah has called it “Two marathons and a bit of a bike ride” , or, alternatively, “ 3 Countries, 2 Marathons, 1 Old Bird”!!!!

I couldn’t believe what she was proposing! All I knew is that when I met her, I was going to give her the biggest hug humanly possible! I couldn’t wait!

When that moment came emotion consumed me, I had tears in my eyes and felt so happy to finally meet and talk in person. I don’t think any member of the team could quite get our heads around the challenge that lay ahead of Sarah and we were all in awe of her commitment to fundraising, in memory of Simon (pictured below), and for me and BTRC.

Simon

 

Paris Marathon completed in a very respectable time of 4hours 50mins, we met afterwards to celebrate the first success of her long journey. We hugged/cried goodbye and we all wished her well for her remaining two legs of her challenge. The morning after running 26.2 miles, Sarah, joined by her brother Andy, hopped on their bikes, and the support car driven by husband Chris. They casually cycled 70 miles!!!!!!

They arrived in Rotterdam on Friday, after having cycled nearer to 300 miles. This gave Sarah only one full day of rest before the final leg of her challenge!

We have all been following her progress intently on social media, and we were all hoping she would be able to complete the Rotterdam Marathon on Sunday and, more importantly, finish unscathed.

I was over the moon when I received a call from her telling me that SHE DID IT!! And, not only that, she only went and bloomin’ ran the Rotterdam Marathon 30 minutes faster than Paris! 4 hours 21 minutes!

Sarah Rotterdam Marathon

CHALLENGE COMPLETE!

Sarah has raised an absolutely UNBELIEVABLE amount of money for BTRC, and the total is still rising. Her total so far is:

£4,605.80

If you do feel so inclined, Sarah’s fundraising hasn’t stopped yet and it would be so amazing if we could see her personal target hit that £5,000 mark! Her Just Giving page can be found here.

Sarah two medals

 

Additionally, if any of you live in the York area, Sarah is hosting a night of fundraising for varying cancer charities, including BTRC. This event is taking place on Saturday 16th April commencing at 8pm, The Basement, City Screen, York. It is a night of live music and Sarah asks you to join her in celebrating her marathon successes and to raise even more money! Sounds like fun to me, get your dancing shoes on! Tickets can be purchased from the City Screen Box Office –http://www.thebasementyork.co.uk/#!boxsmash/ck1p

Sarah Charity Event.jpg

 

All that is left to be said, is a HUGEEEEE congratulations to Sarah! We are all so proud of you and your achievements! And I am sure Simon is looking down on you filled with even more pride! Cannot wait to see you soon – lunch will definitely be on me!!

POST 29: ALLEZ, ALLEZ ANNA’S ARMY!!!

12 runners + 32 supporters + 1 city + 1 marathon + 1 charity = ONE AMAZING WEEKEND!

I simply have to fill you all in on our trip to Paris. Well, to be totally frank, it was more than just a trip, it was a mission! 12 incredibly brave (crazy!) people, some of whom I hadn’t even had the pleasure of meeting, some I hadn’t seen in years, chose to run the Paris Marathon in aid of Brain Tumour Research Campaign. Not only did I have the absolute joy and pleasure of the company of these 12 people, but along with them came the support of 32 others!

This marathon mission, as you may have noticed, had been in the planning for a long time. I had initially intended to run it myself, but my poor health and lack of energy, unfortunately, soon put an end to that idea. I immersed myself in rallying the ‘troops’ and made sure I had a loud enough voice and a big enough banner to try and help the remaining runners around the gruelling 26.2 miles course.

my banner

I can admit this now, but as the marathon was approaching, I knew I made the right decision about pulling out. I was fully able to embrace all the excitement being reunited with friends and meeting new ones too, without the worry of whether I would actually be able to make it across that finish line without landing myself in a French hospital!

Thursday 31st March, Andy and I boarded our plane to Paris Charles De Gaulle. This in itself caused many a happy memory to come rushing back to me of my university year abroaduni days spent in the city! I felt like Anna of old being reunited with my friends from uni, and was so touched that so many people had made the effort to travel to this beautiful city to support the runners, myself and the amazing cause.

Before we left for Paris, runners were asked for suggestions for slogans to put on banners to encourage them during the marathon. I just wanted to clarify this so nobody reading this blog, or looking at the photos from the weekend think that I am some kind of dictator with her own ‘army’, or starting some kind of cult for that matter!!!! Their response was, “ALLEZ, ALLEZ ANNA’S ARMY!!”; and that was that! Thanks to Steve and those at Office Team a fantastic banner was designed (bar the photo of me! HAHA!) and was held high for all the runners to see!

IMG_5410 (1)

 

Ellie and her amazing family support had her own banner, “GO ELLIE!” and boy, did she go! Banners, BTRC t-shirts and jumpers on, it just was missing one thing….the runners HAD to be wearing something special, right?!

Here is where my amazing friends at the Rotary Club of Newton Aycliffe came to our rescue! I was invited to speak to the club back in September 2015, since then the Club has been nothing but overwhelmingly supportive of not only my cause, but of me personally. They made a generous donation to my fundraising mission, made me an Honorary Member (and the youngest!) of their Club, nominated me for a Rotary International in Great Britain and Ireland Young Citizen of the Year Award (which I went on to win!), and have constantly been there for me as friends. I thought I was pushing my luck and maybe being a bit cheeky when I sent an email around asking if any of the members might know of anyone/ any company that might be able to help make my teams’ running vests, however, yet again, the Club surpassed all my expectations and overwhelmingly told me that they would arrange and sponsor the vests for me! I sent them across the agreed design and that was that; these wonderful team vests were produced!

I really would like to take this opportunity to thank all at the Club for their continued support. I can tell you something, all 12 runners looked amazing in the vests and it made it much easier for the supporters to spot them in the crowds. Thank you doesn’t seem enough, but I really am so grateful, and I know the runners were too! I look forward to coming to see you all very soon to tell you all of this in person!

The night before the marathon approached and we all met up to dish out these vests, to dish out words of encouragements, and most importantly of all, to dish out food!!! It was such an amazing feeling knowing that all these people were here to run for me and BTRC. It was lovely to see everybody mingling and getting to know one another; it was simply great fun! Everyone was conscious of the early start that awaited everyone in the morning, and the teeny weeny matter of the little jog 12 people were attempting to complete as well! With that in mind, we went our separate ways and hit the hay! Goodness knows how the runners felt, I felt sick with nerves for them and was just hoping that each one of them completed the run without any injuries; my conscience was playing havoc with me!

*********

‘M Day’ arrived and we all met on the Champs Elysées ready for team photos. Amongst all of the tens of thousands of people this was hard to organise as you can imagine. Unfortunately, Tas and Lola didn’t make the photo call, but here is a selection for you to see.

 

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The majority of us supporters then made our way to La Place de la Bastille, here we could cheer the runners on at mile 3 and then they would loop on the other side at mile 14. Banners held high and voices ready we saw the runners one by one pass each point. Although, we only managed to see Andy Davis at mile 14 as this superman was in the earlier start group. I couldn’t believe how easy they were all making it look, or, at least, I couldn’t believe what great actors/actresses they were!

Mile 14 was tough for some, and emotions were rife, but once we had seen the last of the 12 pass that mark, we headed for a spot near the finish. Supporters were able to bask in the glorious sunshine that shone over Paris that day, whether these were the perfect conditions for our runners however was a different question!

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Some other groups of supporters dotted themselves around the course which was great as the runners were able to spot the banners, see the colours and hear the support all the way through.

We camped out just past the 26 mile marker. The end was in sight, they were almost there, they had almost run a marathon! As the Paris Marathon didn’t seem so strict as others I had watched previously, we were actually able to get the other side of the barriers; every time a member of ‘Anna’s Army’ headed towards us we were able to run along with them, some supporters even grabbing their hands and crossing the finish line together! The atmosphere was electric; emotions were still rife. I could not have been prouder of every single one of the team. The physical and mental strength that day must have taken…hats off, or in my case let’s say “WIGS OFF” to you guys!

(Speaking of ‘wigs off’, please keep an eye out in the video at the end of this post that includes photos of the men all trying on my wig – including the French barman!)

 

I am delighted to say that all 12 crossed that finish line, some more battered than others. They all can say they completed the Paris Marathon 2016, and can wear their medal with pride!

Celebrations soon kicked into full swing and to a bar we headed! Never has a drink been more deserved for the 12 runners, or more needed for all the supporters who had been shouting at the top of their lungs all day! I looked around our huge group and felt so emotional and so honoured to know such amazingly selfless people, who would put their bodies on the line and take time out of their lives to support me and this cause.

post marathon celebrations

I cannot thank each and every one of you enough, including every single supporter. You have all given me so many great memories that I will cherish, and made me appreciate, even more, the life that I am lucky enough to lead at this moment in time.

Another particular thank you I must make in particular is to Andy Davis for taking the reins and being the mastermind behind this marathon mission. None of this would have happened without you, Andy, and, I know I say it a lot, but your support, and the support of your entire family, throughout these 15 months still leaves me in awe. I love you all very much.

Davis Family

A final thank you HAS to go to every single person who donated to any of the Just Giving Pages or Sponsorship forms of my runners. Without you this weekend would have been for nothing. Instead, I am MORE than delighted to announce, that, to date (Just Giving pages are still open…) this Paris Marathon Mission alone, has raised a WHOPPING….

£16,961.66

…which sounds a lot like £17,000 to me!

The difference this money will make to BTRC is so exciting.

 

I am now calling my team ‘ANNA’S ANGELS’ – YOU ARE ALL INCREDIBLE

Andy, Bex, Sam, Edd, Nick, Sarah, Ellie, Polly, Kayleigh, Tessa, Lola and Tas, please take a bow!

 

Now, please take me back to Paris, I have been on a wedding dress diet since my return and really could do with some more crepes, croissants, pain au chocolats……..

 

I will leave you with this video that left me in floods of tears the other night, Andy Davis is proving to be a dab hand at these now:

 

 

 

 

POST 26: WELL, IT IS AWARDS SEASON…

It’s official folks, I WON!

 

I am delighted and so proud to announce that I have won a RIBI (Rotary International in Great Britain and Ireland) Young Citizen of the Year Award! I can’t quite believe it!

Launched in 2007 in association with the BBC News Channel, the awards recognise young people under the age of 25, who have demonstrated their commitment to citizenship through various activities.  The awards can be for individuals or groups, for projects that showcase and celebrate the positive citizenship and important responsibilities assumed by many young people in Great Britain and Ireland. Rotary

RIBI Young Citizen winners receive trophies and a prize of £500 at the RIBI Annual Conference, where the awards are presented live on the BBC News Channel. Later in the year, the winners visit the BBC News TV studios in London and the Houses of Parliament.”

 

The Annual Conference is to be held in Bournemouth at the BIC in April. I am gutted as the conference just so happens to fall on the same weekend as the Paris Marathon 😦 . Bloomin’ typical! So I am awaiting to hear how I will receive mine. Clearly, my £500 prize will be going straight in to my fundraising pot for The Brain Tumour Research Campaign.

 

Words cannot express how shocked I am! I feel that this is the only thing that can be done; someone needs to help, so why on earth should it not be me?! Whereas others seem to think that my actions deserve such lovely recognition…it’s pretty amazing!

 

I must write this blog post in typical awards season style and thank a few people…

First of all, I must thank every member of the Newton Aycliffe Rotary Club who decided that I was worthy enough of a nomination. Having this new group of friends who believe in me is truly an honour. A special mention must go to Ron who submitted a wonderful piece of writing in addition to my nomination form; he truly does write so beautifully (I think that’s why I have won, as he made me sound better than I am!!). I’d also like to thank Michael for inviting me into the world of Rotary in the first instance by inviting me to talk to the Club.

Finally, I need to thank everyone who has helped me during this mad year, during the highs and the lows. I wouldn’t be able to keep in such a positive frame of mind without you all and I certainly wouldn’t be able to keep the ball rolling on my campaign to raise awareness and funds for research. Every person who reads my posts, or makes a donation off the back of my efforts, are helping my goals become a reality. Slowly, but surely we are helping to save lives.

I AM SO HAPPY!!!

IMG_0637

 

 

POST 19: LIFE WITH A BRAIN TUMOUR PART II

 

To wrap up 2015, and the mad year I have had, I want to briefly replicate the first post I wrote at the beginning of last year (where did that time go?!). I want to give you an insight into the updated version; who I was, who I am, who I will be.

Anna Swabey

Who I was:

  • I was a 23 year old girl, dealt the worst of hands; told that I had roughly 3 years to live.post op
  • I didn’t know where to turn, what to say, what to do.
  • I had no idea why cancer had chosen me; a young, fit, healthy girl?!
  • I was heartbroken – not set to ever marry or have children; not set to live my dreams.
  • I was trying to hold it all together for my family.
  • I was determined to live; I had to fight.
  • I had two brain operations.Mask 1
  • I was sick, exhausted, and experiencing gruelling treatment.
  • I needed a focus; I had to help others, and I needed to fundraise in order to help find more treatments and, ultimately, a cure.

 

Who I am now:

  • I am Anna Swabey, a 24 year old woman, campaigning to obtain more funding for brain tumour research.
  • I am engaged to be married to my dream man; a mummy to a gorgeous puppy.
  • Together, since March, we have raised almost £37,000 for Brain Tumour Research Campaign.
  • I have attended the Houses of Parliament to share my experiences with the Petitions Committee.
  • I have met and spoken to the most incredibly inspiring young people, experiencing a similar, if not identical, illness.
  • I am still undergoing chemotherapy treatment; still determined to fight Trev.
  • I am training to run the Paris marathon.
  • I am in awe that I have over 86,000 views of my blog!

 

Who I want to be:

  • I want to be alive for many more years to come.
  • I want to be a wife.
  • I want to raise £100,000 for BTRC.
  • I want to continue to share my journey, in the hope of making a difference to people and families who are yet to be dealt the blow we have.
  • I want to remain tough and keep fighting.
  • I want to complete the Paris Marathon.
  • I want to keep positive, keep smiling, and keep being ME (i.e. a bit of a nutter 😛 ) !

 

I am determined that 2016 will be a good year for my entire family and I. I can’t wait to see what this year holds for my new little family unit; Anna, Andrew and Enid. I can’t wait to see, with your help, how much of a difference we can make to brain tumour research and to patients lives, just like mine.

I thank you all for supporting me throughout 2015, and I hope you continue to follow my progress and campaigning in 2016.

Finally, I wish you all….

A VERY HAPPY NEW YEAR!!!

 

 

 

POST 18: ALL I WANT FOR CHRISTMAS IS MY SCAN TO BE STABLE

As much as I am looking forward to Christmas with my family, new family and fiancé, at the moment, my thoughts are mainly focussed on the looming appointment I have in the New Year, and the results this appointment will, soon after, bring with it.

If I take you back to my post radiotherapy scan that I had in July, the results were, to begin with at least, heartbreaking. Despite 7 gruelling weeks of treatment, Trev had appeared to have grown; grown significantly. A more detailed perfusion scan however, revealed to the radiographers that it was actually just swelling caused by the treatment, and the initial worry was indeed unnecessary; which I suppose, should have been a relief. Yet, personally, I don’t think the latter news ever really sank in for me. I was always kind of waiting for the next scan for complete reassurance; this scan is on January 4th…..waiting for the result is going to be a bugger for sure!

But if you are out there Santa, I have been a very good girl this year and I have tried my hardest to handle this tumour rubbish as best as I can. I hope you have also seen that I have raised a lot money for BTRC and I continue to tirelessly raise awareness of this awful disease that has taken and continues to take the lives of so many.

Please, Santa, all I want for Christmas is my scan to be stable.

Dear santa blog

 

Most importantly of all, I would like to wish every single one of you who has supported me this year, read a post on my blog, donated some money to BTRC…

A VERY Merry Christmas!

And for those families who are dealing with celebrating Christmas without a loved one who has sadly lost their fight against brain cancer; for those people, like me, who are unsure if this may be their last Christmas; you are all in my thoughts – stay strong my brain tumour buddies.

 

Lots of love and Christmas kisses from the Swabey-Bells!

Swabey- Bells

 

POST 12: WHERE TO GO FROM HERE…?

Hello!

I wrote this part of my post quite a while ago now, but never got round to checking it and posting it, but here you go…

(Written roughly w/c 29th June 2015)

Well, my break from treatment has flown. And I have had many of you asking if I am okay as I have been rather quiet since finishing chemo/radiotherapy on June 12th

Truth is, I have struggled the past few weeks, and I want to try and be as honest as possible with you all, without being too much of a “negative Nancy”, as my mood has changed over the past couple of days or so and for my own sake I would like to keep steering in this more positive direction. And I am really late – I should be packing for my trip down south right now, so I won’t keep you for long. (That is now a lie – apologies!!)

I have had, like the doctor did mention could happen, severe side effects in terms of fatigue since completing treatment. I have found it hard to conjure up the motivation to shower, get ready etc. let alone go out. I have then found myself in a vicious circle; the less I do, the more tired I become; the less I do, the more I think; the more I think, the more negative thoughts that enter my brain.

The main thought that has been bugging me (in all honesty, scaring) me the most, has been that we are in JULY! It has been over seven months since I was taken in to hospital now. As much as I like to remain positive and hope that I will live a HELL OF A LOT longer than the average 3 year diagnosis, if we do take this 3 year figure – I have already fought through 7 months out of 36 months already. 7 months, gone, just like that!

Other times, I have been worrying about my scan that is scheduled for Tuesday. What if the tumour has grown?! I have been trying to play it through in my mind of how I will deal with the news if that is what I will be told; but nothing can prepare you for that. I try to remind myself of a previous blog post I wrote, when I spoke about how a session at the Maggie’s Centre taught me to deal with uncertainty and how not to try to worry about things that are totally out of your control; but I am most definitely NOT a pro at this yet! So, I sit here, begging for the best case scenario; I want to hear the word STABLE. I want to be stable. We always knew that Trev was not very receptive to radiotherapy treatment, so I am not being ridiculous thinking that I will be told it has shrunk or anything; just stable. No growth please!!!!!

Tuesday is also when I will begin my next load of chemotherapy; Temozolomide again, but this time on double dosage, for 5 days, and then off for the remainder of that 4 week period. Depending on my reaction to it, this could last for up to 12 months. A year; blehhhh! I am, again, expecting the worst; if you remember, I was very sick on my first day of chemo in the back end of April, thus, on double the dosage, I reckon it may be quite tough.

I have basically just felt a bit POOP! I have piled on weight, I have no hair, I have minging skin (all may seem so little and trivial in the grand scheme of things I know), and being completely honest, I don’t think I have ever got my head around the fact that I have cancer (nope, I certainly haven’t, as it still feels odd typing it out).

I feel like I need to apologise that this post is probably a bit of a let down and not very “Anna-like”, but I think it is important that you know that even people who can come across really tough on the surface, and put on a smile and a brave face, can be just as weak and vulnerable as someone who cannot hide it as well. Most of the time, I find I put on the brave face to save my family from having to deal with an emotional wreck 24/7. But if these down weeks have taught me anything, it is probably that this is not a good action plan. I need to let them know exactly how I am feeling; and I want to let you know too. And I should not apologise for having such feelings.

In actual fact, I found this quote online the other day, probably when I was stalking someone I do not know on Instagram (as you do….right?!):

Never apologize for how you feel. No one can control how they feel. The sun doesn’t apologize for being the sun. The rain doesn’t say sorry for falling. Feelings just are.

On the flip side, I have been on the radio again, BBC Tees had me on Radiofor a full hour show which was fab. I have been amazed by the on going fundraising support and ideas from so many people; it really is humbling and I am so honoured people have taken this campaign to their hearts and are willing to help try to find a cure to save my life and so many others alike.

I need to remind myself, and inform you, that since deciding to start fundraising on behalf of Brain Tumour Research Campaign, only at the beginning of March 2015, and, with the help of all of you wonderful lot, the total we have raised cumulatively has now ticked over £27,000!

TWENTY SEVEN THOUSAND POUNDS!

This is when I get a “kick up my derriere” and realise that I am doing good! WE are doing good! No, actually we are doing better than good! £27,000 is INCREDIBLE!!!!!!!

change lives quote

I am blessed that no matter how I am feeling mentally, I always have the support of so many; family, boyfriend, loved ones, friends, adopted families, brain tumour buddies, and people who have come across my blog and have made the conscious decision to help me on my journey, most without even knowing me at all!

I will be sure to let you know how I get on this coming Tuesday, I will just apologise in advance if it is slightly delayed, as I will be starting on my chemo.

But this is it; Fresh start; Positive Anna. Speak soon!!!!

pick yourself up

Scan Results

My appointment was on July 14th 2015. It is now August 8th 2015. So I broke my promise to you all I am afraid.

Some of you who follow Inside My Head on Facebook also, may already have seen why this is the case. Please see below what I posted:

facebook post number 1facebook post number 2

Trev, the bastard, had grown 😦 .

POST 9: CINDERELLA DID GO TO THE BALL…

As promised…

As I have hammered into you all since I started writing my blog, Saturday May 2nd saw Lox of Love, my family’s business, and I, host Cinderella’s Charity Ball at Wynyard Hall. Seeing as I have been rabbitting on about it for a while, I thought it was only fair that I share the evening with you all.

The organisation of it all was, at times, quite traumatic. I was so desperate for it to be an enjoyable evening and raise a load of money for BTRC and I am a perfectionist, so was determined to make it MINT. Fortunately, all the stress seemed 100% worth it.

To set the scene; we chose the beautiful venue of Wynyard Hall, so the wow factor was there right away on arrival for our ball guests. The red carpet was laid at the front entrance, and stood either side of this carpet were our beautiful Cinderella and Fairy Godmother, thanks to Emma Enchanted.Wynyardchandelier

blog cinderella and me

On entering the building, guests were greeted with a glass of bubbly and the Image captured bytalented Georgia Fletcher tinkling the keys of the piano in the main hall. We then made our way into the conservatory where all our amazing raffle prizes and auction lots were on display. With the help of my incredible family, raffle tickets were being sold left, right and centre; this excited me a lot. We had all Image captured by spent a lot of time ensuring the quality of the prizes; we were more than aware, the better the prizes, the more money we could raise for BTRC. I was busy trying to say hello to everyone arriving; it was such a joy to see Image captured bymy family, friends from many different walks of my life, and people that I had not even met before! To know they were all there to support me in my fundraising and to support BTRC was really humbling.

A highlight of the evening, I must say, was all thanks to Ryan Metcalfe. Ryan decided to get in touch with us after hearing about our plans, and he offered his services free of charge. These services turned out to be some of the most mind boggling sleight of hand magic! A huge fan of Dynamo myself, I always Image captured byfear for other magicians that they have so much to live up to, but my goodness, Ryan smashed it! All I could hear were gasps and laughter (and swear words) coming from our guests. From ludicrous card tricks, to the sheer impossible, Ryan truly did make our evening MAGICAL!  All down to his incredible generosity; Ryan, I thank you!

As dinner was ready to be served, we made our way into the ballroom; this is where we would be spending the remainder of ourBall tables evening. We ploughed through wine, our starter, more wine, our main course, more wine, our desert, a Image captured bycheeky glass slipper cocktail. I was beginning to get nervous when the cheesecake was served…a few mouthfuls in, and that was my cue to get up on stage and make my speech! EEEEEEEK! There was so much I wanted and simply needed to say! A majority of which was a heap load of thank you’s. As detailed on the evening, I could not stand up and thank absolutely everybody who has speechnot only supported me since my diagnosis, but had made a particular effort with helping me organise this ball, but I tried my best to acknowledge those present that evening. I think nerves slightly got the better of me and I possibly missed out a few; for this reason I feel like the best thing to say on this blog post is one big THANK YOU! That thank you goes out anyone who helped the event happen, all I need to say I suppose, is that you really do know who you are. To each and every one of you, I am so grateful for all your support; it would not have happened without you.

I am hoping (and I have already sent out a plea on facebook) that someone who attended the ball may have recorded my speech; I am sure I saw many camera phones up during my rambling. If you have it recorded, please can you get in touch with me?

Following my speech, I was more than delighted to introduce the room to Wendy Fulcher, the founder of BTRC. I was honoured to have her join us for the evening and to then join me on stage to make her own speech, informing everyone just how incredible this charity is. I then went back to my table, I wish I was informed of what was to come…a load of tears!

Wendy began her speech by reading out an email sent to her that morning by my consultant, Kevin O’Neill, and I feel I simply have to share this with you all:

I am sorry I cannot be at the Cinderella Ball but I couldn’t pass up the opportunity of at least sending a few words of thanks and commendation.

When I first met Anna I saw a young beautiful girl who had been hit from the side by this frightening diagnosis. She had everything to live for but was lost with very few options. I was instantly drawn to her energy and determination to fight this and do something positive and I think bringing together tonight’s Ball is a reflection of that. This is something I can identify and as her treating neurosurgeon we are now both in this battle together. I offered Anna a different path. One with options because she needed that, she deserved it and it was possible through our endeavours in research. There is always something to be done whether large or small to improve the outcome and overcome this condition. Some of that is at our fingertips now and some is in the pipeline for the future which leads to our fundamental goal in research.  To fight this disease until we have a cure. I refer to this as our battle against brain tumours which is one reason why we named it a campaign. So thank you Anna for your efforts and support, but in particular your bravery and determination. Lastly a big thank you to all here tonight for attending and offering your support and for joining this campaign.

Enjoy your evening

Kevin O’Neill

Consultant Neurosurgeon Head of Neurosurgery Imperial College Healthcare NHS Trust

I was so happy to hear Kevin’s words and I know he would have loved to have been at the ball also.

It was great for Wendy to share with us all, all about the charity and what it means to the charity to have our support. Within such a short space of time, less than 3 months, with the help of family, friends, and new friends, Wendy announced we have managed to raise over £12,000 already! (excluding money raised from the evening itself! ).

It was an honour to have Wendy join us and an honour listening to her speak so passionately about this campaign. I very much feel like I have made the right decision for me, in choosing BTRC as my chosen charity. It is so close to my heart and to be able to have such a great relationship with Wendy and Kevin, makes it feel even more right.

Tears wiped, it was time to hand over to my Dad and Sister; Auction and raffle time! As mentioned we were so fortunate that prizes were incredible thanks to more than generous donations! I was so overwhelmed by everyone’s involvement in the auction bidding! Auction lots ranged from a villa holiday in Spain, to 4 VIP Foo Fighters tickets, signed Artic Monkey’s and Noel Gallaghers High Flying Birds vinyl, to football memorabilia, to the most beautiful Cinderella Carriage Cake! Cinderella cakeMoney was flying in and in the auction alone we raised over £3000!!!! On a side note, some of that was spent on a present for me! Andy, my boyfriend, bought me the signed Miranda DVD!!!!!! EEEEEEEEP! IDOL ALERT…I was so chuffed, but he did get a telling off as well 😛 .

A huge shout out to my nephew, Edison, and my niece, Amber for having the highest raffle ticket sales! It was phenomenal, we managed to raise over £1000 in raffle tickets! To be fair, the top prize was a villa holiday in Florida!!! Along with a whole range of hamper prizes, Kindle Fire, hotel stays, afternoon tea for 4 at Wynyard, golf days the list really did go on and on….

Then it was PARTY TIME!!!!!! The part I had certainly been waiting for…I was desperate to get my dance on…and boy we all did! A highlight for me was oops upside your headeveryone dancing along to Oops Upside Your Head! – This was one of the inappropriate song choices for the evening! I walked on stage to Kylie Minogue Can’t Get you out of my Head, and then challenged everyone to beat my inappropriate song choice. Winner was Clever Trevor! (even though I do not think Trev is clever…or at least he won’t be clever soon!!!!!)

Midnight struck, and to mark the special moment in Cinderella’s story, instead of her having to leave, we chose to have a balloon drop instead! I chose to drop the balloons to the song Klingande by Jubel; including the appropriate lyrics “SAVE ME”.

balloon drop

Unfortunately 1am came around far too quickly for my liking! But everyone certainly seemed to have a great evening!Image captured by

On a personal level, it was amazing having so many loved ones there but also people I had not had the joy of meeting until the evening. It really made me realise how blessed I am to have SO many people supporting the Brain Tumour Research Campaign, and the campaign to help prolong my life!

It now feels extremely weird without having the ball to think about, but I am already on to my next fundraising mission; and it’s a BIG one, I tell you! I will reveal all as soon as I can.

All that I will finish with is another THANK YOU! I am one very lucky girl, who, with your help, raised a staggering £4934.70 that evening!!!!! 🙂 🙂 🙂

Me mum and dad

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!

MoS2 Template Master

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 hairwhen 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 prettyc4aae332c8b0395bac010cfb4dafcefa 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 3Charlotte 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 Charlotte blondekind 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 and Amberme 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.

GWQ Girls

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!