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 33: Taking comfort from the little things…

Hi all, many of you may know me by now from hijacking Anna’s Facebook page to update you on her condition, but I am Victoria, Anna’s (much older) sister.  I wanted to write this on Anna’s behalf because, as a family, we all know how important her blog is to her.

Most of you will already know that Anna’s condition deteriorated suddenly on Sunday but I know she would want to share her story with you in a bit more detail than just a few Facebook posts from her far less eloquent sister.  So apologies in advance for the ramblings you’re about to read!

I’ll go back to 27th July when Anna had her last scan.  This was 6 weeks after finishing 14 months of chemotherapy.  With her wedding to Andy coming up we were all hoping for another ‘stable’ scan result to mirror the one we received in January, however this was not to be.  Anna’s results showed a new growth away from her original tumour site.

Not long after her scan Anna started showing signs of struggle, suffering from nausea, vomiting and severe tiredness, which led her surgical consultant at Charing Cross to suggest another surgery; at the very least to perform a biopsy so that we knew what we were dealing with.  This surgery took place on 9th August, and her incredible surgeons removed a plum to small apple-sized mass, which we hoped would relieve a bit of pressure and hopefully give her some more time.  Anna appeared to recover well from the surgery, though not as quickly as her first operation, and was making steady progress at home.

When Anna’s biopsy results came back on 15th August, I remember the phone call vividly.  It was the night before my partner and I were due to go down to London for a few days sightseeing with our boys.  Anna’s call was matter of fact and to the point.  Her biopsy results showed that the tumour had now progressed to a Grade 4.  In all honesty, and in typical Anna style, she was more bothered about how we all felt than what it meant for her.

After receiving the news, life continued relatively normally for us all; wedding plans were still underway, and even though we knew that the new grading of Anna’s tumour meant that it was even more aggressive, we still all thought that she would be well enough to go ahead with her big day.  This was not to be however, and 2 weeks ago we saw a huge change in Anna.  She was very tired, much slower in her movements and lacked her usual gusto (though she was still able to put all of us in our places if she felt we were fussing her too much!).. We visited our family in Stoke for our cousin’s wedding reception, and we are so grateful that she was able to do that.  Our family loves a good get together and this was the last social outing she had, which meant such a lot to all of us.

Since then Anna’s condition has deteriorated dramatically and last Sunday, shortly before she was due to come over for Sunday dinner with the family (she’s a sucker for Yorkshire puddings and Lee, my partner, is a pro at making them!) she took ill.  We had the most horrendous couple of days last Sunday and Monday, as Anna’s deterioration was so sudden, she was sleeping constantly and we truly thought that we wouldn’t get her back from that.  However, we have been privileged to have spent the past few days being able to chat with her briefly, in between her naps, thanks to the amazing care she has received from her district nurse, Heather, and the Marie Curie team, who have given her a concoction of drugs to keep her peaceful and comfortable, yet relatively alert when she has managed any time awake.  Christine, the lovely Macmillan nurse that came to visit us yesterday, described medicine as a bit of an art and she wasn’t wrong!  Anna’s team of nurses have given us time that we didn’t think we would have after her decline last Sunday, and we will be forever grateful for that.

During the past 18 months, we have chatted with Anna on many occasions about what kind of care she would like to receive, and where she wanted to be during her final weeks, and she was always adamant that she wanted to be at home.  So last Sunday when she became very sick we were faced with the difficult decision of whether to let her go to hospital for further scans, tests etc., or to allow her to stay at home where she wanted to be.  As a family, we all felt that staying at home was the right choice to make, assuming that between us we would be responsible for the bulk of her care which, needless to say, we were all more than prepared to do.  We couldn’t have been more mistaken however, and the incredible home care she has received, from district nurses, Marie Curie and Dale Care, has allowed us to spend precious time with Anna, without having to worry about her personal care or medical needs.

I cannot believe how calm and peaceful the past week has been and what an incredible group of people we have been lucky enough to have been in the hands of; starting with Terry, the paramedic who initially came out to us last Sunday, along with Richard and Lynn from Marie Curie, and Dr Dharani, the urgent care GP, whose reassuring presence was such a comfort on a truly distressing day.  Not only have all Anna’s nurses and carers been amazing with her, but they have really taken the time with our family to ensure that we are all looking after ourselves and each other during this most heart-breaking time.

So that’s really all I can update you with for now.  Anna is peaceful in her bed, mostly sleeping.  We have a few lucid moments with her every now and then, and we are so thankful that she is comfortable and relatively pain-free.  We can all take comfort in the fact that Anna is exactly where she wants to be, surrounded by her close family and friends.

I wanted to say, on behalf of Anna’s family, that we are so grateful for the unending support and encouragement you have all shown to Anna (and us!) since her initial diagnosis.  She has faced her illness with positivity, dignity and absolute defiance, and we couldn’t be more proud of our beautiful girl and the way she has touched so many people with her amazing attitude to life, love and the whole heap of crap she has had to contend with since the arrival of Trev!!  We have all taken our cue from Anna throughout her illness and we will continue to do so through the most heart-breaking and difficult time of our lives.  Thank you to you all for reaffirming to us what we already know, that our amazing Anna is one of life’s truly inspiring and incredible human beings.

From a very proud and humbled sister,

Victoria xx

NB Anna’s goal was to reach £100k in her fundraising efforts for Brain Tumour Research Campaign.  Though her own Justgiving page shows a total of around £53k, her combined total with friends, family and army of supporters is closer to £80k, and we are so proud of her, and her fundraisers for raising such an incredible amount.  You can donate to Anna’s Justgiving page here. Any amount to help towards Anna’s target would be gratefully received.





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😀



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.



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


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


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 –!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!!


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….


…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:






As promised, this post is to keep you all in the loop.


Post 23 announced the fantastic news that the Petition to gain more funding for research into brain tumours had gained over 120,000 signatures of support and as a consequence had secured a debate in Parliament. The date for this debate was to be announced after the Petitions Committee had published their report, detailing their findings from the first every inquiry to be launched by this newly formed Government Committee.

The Petitions Committee’s report has now been published. I want to highlight their key findings, let you know what happens from here, and ask for a huge favour from you all in the process…


Quoting the report:

This was the first ever inquiry by the House of Commons Petitions Committee into a subject raised by an e-petition. The Committee was set up in July 2015 and has, from the outset, aimed to give the public a direct channel to call for action from the Government and Parliament. The Government responds to all petitions with 10,000 signatures. The Committee considers all petitions with over 100,000 signatures for debate. The Committee can also seek further information, in writing or in person, about the subject of a petition, and can produce reports like this one with recommendations to the Government.

Funding for brain tumour research is a hugely complex subject. The Committee decided that it needed to gather a wide range of evidence to allow it to make recommendations to the Government. In addition to formal evidence from relevant experts, the Committee also wanted to hear the experiences of members of the public whose lives had been affected by brain tumours. Many people have contributed their own stories to assist the Committee in its work. This report presents the evidence that the Committee has heard, and calls on the Government to look closely at that evidence and to reconsider its initial response to the petition.



As you may already be aware, I was one of the 20 members of the public who were invited to share our experiences with the Committee back in November. I was absolutely delighted to be able to take part in this inquiry, and to see that points I raised and my experiences have been included in the report. I am even more delighted after having read the complete report and, most notably, the recommendations that the Petitions Committee have made to the Government.




The full report is available to read here. But I want to highlight the key conclusions they came to and the all-important recommendations to Government.

The report was split into several parts, namely: Awareness and diagnosis, Funding levels, Barriers to research, Setting research priorities, Burden of disease, Availability of non-therapeutic drugs.

The Committee’s findings in these varying areas concluded:

116.For too long, funding for brain tumour research has been inadequate and not given sufficient priority. Britain has dedicated researchers in this area but is losing young, talented people because they are unable to access research funding. The country is losing the chance to be a world leader in this area and is letting down patients and their families.

117.The Committee has heard throughout this inquiry that patients with brain tumours are failed at every stage—from diagnosis and treatment to research funding. There has been little improvement in the prognosis for brain tumour patients over the last 30 years. Brain tumours are often considered to be rare, but they are the biggest cancer killer of children and the most fatal cancer in terms of life years lost—and the incidence of brain tumours is on the rise. The number of life years lost ought to be a major factor in allocating research funding, but it is not given sufficient consideration. Where there has been significant investment into research, the outcomes for sufferers of other cancers, such as breast cancer and leukaemia, have improved dramatically. No one who took part in this inquiry wanted funding to be taken away from other cancers. What they wanted was an equal chance for some progress.

118.Funding for site-specific brain tumour research comes mostly from the voluntary sector. Charities have done incredible work to fund brain tumour research and we commend them for that. However, they face difficulties in fundraising, not least because of a lack of public awareness. The Government must not leave charities to tackle this devastating disease alone.

119.Sole responsibility for deciding on priorities for medical research and for identifying diseases with unmet need should not be left to the voluntary sector. The Government could and should take a greater lead: by playing a role in identifying gaps in funding, by setting priorities for research and by supporting the development of the research workforce required to give those suffering with a brain tumour some hope for the future.



I would also like to highlight some quotes from Maria Lester, the lady who launched the petition in the first instance alongside support from the charity Brain Tumour Research.

“For too long fundraising has been driven by the cancer community and the Government must step up and invest its fair share. There is no time to waste. It is too late to save my little brother and I will have to live with that loss for the rest of my days, but with improved funding just think how many other brothers, sisters, fathers, mothers, friends and children could still be saved”.

 “At the moment more than 80% of those diagnosed with brain cancer don’t survive more than five years”.

“It’s about life and death, not criteria or process”.


I want to take this opportunity to thank Maria again, and the rest of the Realf family for so courageously and selflessly taking this matter into their own hands in memory of Stephen. He sounds like an incredible man and I only wish I could have met him. I thank you for taking this bold step on behalf of brain tumour patients like myself, I am very grateful. You should be so proud that all your hard work has resulted in this fantastic report!

Realf Family

I would also like to thank all of the Members of the Petitions Committee for all their hard work, empathy and dedication in producing this report. As a patient, it has filled me with great hope for the future.


Now here comes the part where I ask for support…YET AGAIN, I am sorry!


The date for the debate in Parliament on this issue has been announced: Monday April 18th 2016. We need to ensure that our MP’s attend to maximise the impact this debate can make.


I am asking you so VERY politely🙂 if you would be able to contact your MP. Now, I realise all of you are extremely busy, and thankfully, Brain Tumour Research have made this task quite simple, as they have kindly drafted a template of a letter/email/content of a phone call that you could send/make to your MP.

I would hate for all these efforts to fall by the wayside and for us to receive a similar response from Government that we did after reaching 10,000 signatures. Having your MP in attendance could be SO vital.


If you click this link it will take you to their webpage where you can download the template. They ask you to add your “own story” where indicated. If you have your own connection to this illness, please tell your MP what it means to you; it is personal experiences of their constituents that will lead them to attend. If you know only of brain tumours because of reading my blog, then please feel free to include your personal opinions about my journey. I have written something simple below to help those of you who fit in to this latter option:

My own interest in this petition and upcoming debate came about because a friend of mine, Anna Swabey was diagnosed with a terminal brain tumour at the mere age of 23 years old. Anna was fit and healthy prior to suffering a seizure at home and had her whole life ahead of her. In January 2015 however, this all changed and Anna was told she had three years left to live. I have followed Anna’s journey thus far by reading her blog ( and have helped/supported/watched her fundraise over £45,000 for Brain Tumour Research Campaign. Learning all the dire statistics and reading that brain tumour patients, like Anna, are failed at every stage, I urge you to please attend this debate…


If, like I was, you are unsure who your MP actually is, you can find all their contact details here.

I thank each and every one of you who does take the time to contact your MP. If you are so inclined, please can you let me know if you do indeed get a response.



I was unfortunately too poorly to attend the launch event of the report publication on Monday 14th March; my immune system had taken a bit of a battering after month nine of chemotherapy. However, I am most certainly going to be attending Parliament on April 18th when the debate takes place!


A xxx




Let me cast your mind back to POST 15 where I shared my Bucket List with you all. I listed one of my aims:

Have a taste of my dream job as Rugby pitch side reporter/Sports presenter – Linked in with my love of rugby and sport in general, I have always said I want ‘to be the next Gabby Logan’ or the like. I think being able to combine a true passion in your line of work, must be a real joy.”


Well, a certain Lewis Moody may have just been aware of this dream…

The Lewis Moody – one of the greatest rugby players, ex England Captain, England and Leicester Tigers LEGEND, rang me to tell me that he and his Foundation had organised a special day for me at the Tigers vs. London Irish match on Sunday 28th February, and that I would be interviewing a player! Whaaaaaaaaat?!

As I have posted on here, I have had the honor of meeting Lewis before, however, as exciting as the content of our conversation was, I was still in shock that my all time favourite player had RANG me!

As the day came ever closer and Lewis sent me more details across regarding what was in store for me at Welford Road, I couldn’t contain my excitement.

I simply had to share this day with you all…


Andy, my parents, and I (all MAD Tigers fans) met Lewis an hour and a half before kick off. He had sorted us with press passes and we were able to go into the press room and see how a match day pans out for the guys covering the game. I had the pleasure of meeting Bleddyn Jones, rugby commentator for BBC Radio Leicester, whom I listened to a lot when I was at university and couldn’t get to as many games as I would have liked, similarly for away matches. Bleddyn is a Tigers legend himself, making 333 appearances. I tapped into his expertise for my post match interview😉.

We then made our way to the family room where the families and partners convene before and after matches. I had the joy of meeting Geordan Murphy’s wife and their gorgeous baby, Rex – broody much Anna?!❤

Andy and my parents made their way to our seats in the press box, and Lewis took me down the tunnel and on to the pitch – WOW! I never quite realised how amazing the fortress that is Welford Road looked from down there; especially with the incredible Tigers fans’ cheers resonating, waiting for the team to run out on to the pitch! After some selfiesimage1 (2) in the dug outs, introductions to more Tigers legends, ‘Smoke on the Water’ started blaring through the speakers and the ROAR around the stadium and the clapping began….the lads ran on to the pitch – COME ON TIGERS!!! I have never been so close to the action! AHHHHHHH!😀

Lewis and I then joined Andy and my parents in the press box. It was great to get a press point of view of the match, and it was great to be sat in the Crumbie stand that always produces the loudest support. Every fan was especially behind the lads on Sunday; after losing the three previous games on the trot, earning a bonus point win against London Irish was crucial to keep us in contention for a top four finish to keep us in the running to become Aviva Premiership Champions.

image1 (3)

I have to admit I was pretty nervous about having to interview a player if they lost…the last thing they would want to do would be to talk to me!

Fortunately, the tries came rolling in! Pheeeeeeeeew!

My brother was absolutely gutted to not be able to join us – Lewis Moody being his all time favourite player too! Having told Lewis this, we sent Matt a selfie and Lewis recorded a video message for him too – my brother’s response “What a ***king LEGEND!”.


Lewis selfie

Game over, and a bonus point 47-20 win under our belts, Lewis, Andy and I headed back down to the media room. I was able to watch all the post match interviews with the Directors of Rugby and met our main man Richard Cockerill.

I had told Lewis that my favourite player was a new arrival to the club Telusa Veainu. He joined Tigers following the World Cup where he represented Tonga in all four of their pool matches and evidently caught the eyes of the powers that be at Leicester. Since joining the club he has fast become a fans favourite (certainly mine!), scoring some sensational tries and adding some real class and excitement to our back line.

Telusa then appeared in the press room and was ready for his interview…EEEEEEK! I was nervous now! I felt like an ACTUAL reporter and the lights were bloomin’ bright and hot! I managed to get through my questions, only stumbling slightly under the pressure I had put myself under! Lewis and Andy were taking the micky out of me though as I said I fumbled my words because Telusa was staring straight into my eyes! Andy promptly told me I shouldn’t get all flustered like that, certainly not as a consequence of looking into another guys’ eyes! HAHA! Sorry babe!

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Lewis had kindly bought me a new Tigers shirt to get signed, so we then made our way up to the hospitality/corporate suites to meet some more players, via the changing room😉 to get some signatures, and have a drink!


 I was well and truly in my element!


I want to take this opportunity to thank the Leicester Tigers, the players and the coaching team for making this day so special for me – every person I spoke to could not have been nicer or more willing to take some time to have a chat with me. They all took such interest in my life and wished me well for my continuing treatment.

A special mention must go to Telusa for being so lovely to interview and a great laugh! Although he did tell me he doesn’t particularly like being interviewed and that he too was nervous – sorry about that!!😛


Nobody however, deserves more of a thank you than Mr Moody himself. From meeting us all at 1.30pm, up until Andy and I left at around 8pm, Lewis was with us ensuring I had the best day ever. He truly epitomises a sporting legend and is a real role model for up and coming players; he has already proven his worth on the pitch and is deserving of every accolade and trophy he has gained, but my goodness, what a genuinely kind, charismatic, selfless, TOP bloke he is!! I seriously cannot begin to describe how good of a day Sunday was, and that is all down to him. The mere fact he decided to set up The Lewis Moody Foundation alongside his wife, Annie, in the first instance shows what type of guy he is – but seriously Lewis, I cannot express how grateful I am to yourself and your charity for these memories that I will now cherish. Being an avid fan from the age of 8, this day you arranged for me– just wow! I have made it more than clear that I am more than willing to do anything I can do to help with his Foundation and I would love to do some fundraising together in the future.

Me and Lewis

Now roll on another HUGE win at home to Exeter this coming Sunday!

My ROAR will be louder than ever – TIIIIIIIGGGGEEERRRRRSSSSSS!


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.





POST 25: IS IT TOO LATE NOW TO SAY ‘desolé’ ?!

It is with such a heavy heart that I have to write this post. I have some disappointing news, news of which took a lot of deliberation and, indeed, tears.

Last week my parents held, what I can only describe as, an intervention with regards to my Paris Marathon Mission. We came to an agreement that I could be risking a stay in a French hospital if I attempt to run the marathon myself.

Unfortunately, I simply haven’t had enough energy to do the amount of training required to ensure I will be taking on this challenge in the safest way possible, as advised by my consultant. I was told I should only consider this marathon if I completed steady, progressive training, and truth be told, I get tired even from showering.

I considered walking; but even this option was quickly ruled out. 26.2 miles is hardly a stroll in the park or a walk with Enid!

Dog walking

My parents even highlighted that due to me still being on chemo, thus my immune system is a lot weaker, if I were to get blisters (which would be inevitable) and these got infected, the risk is high for me.

My parents told me the prospect of me powering on through and attempting to do this really scared them; it was hard to take, but the sensible decision really was obvious.


I feel as though I am letting so many people down, including myself, and I would like to apologise for agreeing to do it in the first place – I think I am kind of in denial over how tired and, more to the point, how ill I am in terms of the treatments I am having to endure.

Those who know me well will realise it has taken a lot for me to give into this; I hate to be defeated, but at the end of the day my health needs to come first.

The imminence of the marathon and my clear lack of preparation was obviously getting to me more than I realised, in my subconscious perhaps? Once we had reached the decision it literally felt as though a massive weight had been lifted off my shoulders.


I informed all of my team separately on the day I made my mind up, and their support and understanding has been incredible. Incredible, just like them! My team are still busy training and getting not only physically but mentally prepared for April 3rd.

I am delighted that I will now be there as chief supporter…banners and all! I cannot express how much it means to me that all these people are putting their bodies through such a feat to help me and my cause!


So I extend my apologies (Je suis desolée) out to all of you lovely lot as well, and plead for you to still back the rest of my team! All money goes to the amazing cause of BTRC; all money goes towards finding a cure!




P.S Sorry for the Bieber reference in the title of this post too – another thing that is hard to admit is that I think I’m a bit of a Belieber now! AHHHHH!!! monkey