POST 28: READY, STEADY, DEBATE!

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.

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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 (www.annaswabey.wordpress.com) 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!

EXCTING TIMES AHEAD!!

A xxx

 

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POST 27: EAT YOUR HEART OUT GABBY LOGAN!

 

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…

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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.

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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!

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!!!

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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!

 

ALLEZ, ALLEZ, ALLEZ!!!

 

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

 

POST 24: ALL PUBLICITY IS GOOD PUBLICITY

For those of you who didn’t know, I was in the Daily Mail Health Section on Tuesday.

Daily Mail Shot

I was absolutely delighted when I found out my story would be covered in the national press in the Daily Mail’s “My Operation and Me” section. I knew that, with their readership, awareness of brain tumours and the urgent need for funding would be spread rather rapidly.

Yet, I wanted to just clarify a few things as, when reading the article, myself, I felt as though I was reading about someone else in parts. I did not want to confuse people, as in places it is quite contradictory to what I have posted on here.

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I have never been told that the operation I had back in March 2015 at Charing Cross Hospital would save my life. When speaking with Dr Kevin O’Neill I was informed that by removing part of the tumour in the front right of my brain it would enable the proceeding radiotherapy and chemotherapy to be more effective in those places as there would be less tumour tissue. Through use of the incredible technology The Core, that is described in the article, the surgeons were able to remove more than would normally be possible without such technological advancements. What I wasn’t told however, is that they had successfully removed ALL of my tumour in that location of my brain; I was told that roughly 3cm by 4cm was removed, still great considering the original outlook of ‘inoperable’.

In terms of my further treatment, I have also been told that I underwent radio/chemo therapy and my continuing radiotherapy to stunt the growth of my tumours. I have been told not to think that this treatment will ever shrink the remaining tumour in either location, due to the nature of the tumour I have. I continue to endure this treatment in the hope that my average prognosis of three years to live can be extended as long as possible. As with any average figure, unfortunately people do die before three years, but similarly, people live longer also; I am determined to up this average!

I’ll take this moment to thank everyone for their ongoing support, and if anybody ever has any questions about what I have been through or about what I am currently enduring, please do not hesitate to leave a comment on the post, or message me on the Inside My Head Facebook page…it is what this blog is all about!

POST 23: BRAIN TUMOUR RESEARCH FUNDING TO BE DEBATED IN PARLIAMENT

WOOOOOHOOOOOOO! WE DID IT!!!!!!!

I have to start this post with a HUGEEEEE heartfelt thank you to each and every one of you who took the time to sign the brain tumour research funding petition. I have been hammering on about this petition and its importance for the past six months; pleading with you all for signatures, informing you about my trip to the Houses of Parliament, and then pleading some more! But I am so delighted to inform you that it was all worthwhile!

On Friday morning, 29th January, indeed sooner than the February 3rd deadline, the petition reached that all important ONE HUNDRED THOUSAND signatures mark!

Petition over 100k

Reaching this target was a massive team effort from many in the ‘brain tumour community’ as I call it. But I would like to take this opportunity to congratulate Maria Lester who launched the petition in memory of her late brother Stephen. You so deserved this result, Maria, and as a brain tumour patient, I thank you for taking that first bold step! Stephen, I also thank you for the inspiration – what a fitting tribute.

The petition has now reached almost 120,000 signatures – simply incredible!

 

Even better, it has now been confirmed that, once the report from the Petitions Committee (the inquiry I attended) has been published, a date will be set for the issue to be debated in Parliament!

 Confirmation of debate

I reiterate my huge amount of gratitude and promise to keep you in the loop with future developments.

 

Much love,

Anna x

 

POST 22: SUPPORT FROM SENEGAL

As I have told you before, I studied Languages and European Studies at the University of Portsmouth; I majored in French. During my studies at uni I had a conversational tutor called Aba/ M.Bodian. I always struggled with my spoken French, well, I least preferred it out of all my other language disciplines, so I always saw myself as a bit of a poor student in his class!

To my surprise, Aba, who originates from Senegal, contacted me with well wishes after he came across my blog. It was lovely to hear from him last year just after I was diagnosed, and it certainly brought back some fond memories of uni days!

Even lovelier, was the message I received from him last month. He informed me he was now teaching GCSE level students in Senegal and wrote to seek my approval to share my story with his class. I felt extremely honoured and of course I approved!

A few days later I received a document containing messages of support from his GCSE students in this class. As I sat reading all of these, I cried; it felt so incredible to know that even these great kids in Senegal were backing me in my fight against my brain tumour.

 

I wanted to dedicate this blog to them; Coraline, Thierno, Isatou, Mariama, Aya, Moctar, Malick, Fatou, Issa, Sokhna, Jean Louis, Muhammed, Ousseynou, Lamine, Fama, Ababacar, and Kenny. Not forgetting, of course, your wonderful teacher, Aba Bodinski. I wanted to make sure you wonderful students knew just how much of a smile (as well as happy tears) your letters put on my face! It was such a kind thing to do and I thank you for writing them so beautifully! (As a linguist, I can say your English writing skills are impressive!!).

Senegal Support

I hope you don’t mind, but I wanted to share them on my blog:

 

To Anna Swabey by the 9th grade students in Le College Bilingue Dakar, Senegal

 

Dear Anna,

My name is Coraline, I am a student in College Bilingue in Dakar, and I am 14. With my English teacher we had read a text about you and your Brain Tumor.

I find you very courageous to fight such a disease. You are very determined and you help other people who are in the same situation as you and it is very cool. You are a model for me because of your bravery and your determination. You inspired me to fight and to succeed in life.

I advise you to carry on and you will succeed to fight against this Brain Tumor. I also congratulate you on your engagement and upcoming wedding. I wish you the best of the world.

Coraline

Hello Anna,

My name is Thierno Noba, I am in 9th grade at LCB, and live in Senegal.

I’m writing to express my support. I find you brave, bubbly and amazing. For me, you are inspirational because what you did is something someone else would not surely do. You are inspirational because you managed to turn your negative experiences into positive actions and I find it very fascinating.

I support you because I appreciate all the activities you established to fight Brain Tumor and encourage you to keep fighting because I know that you can make it.

I also want to congratulate you on your engagement and upcoming wedding. I wish you the best.

Thierno

 

Dearest Anna,

My name is Isatou KA and I am in 9th grade, in a school called College Bilingue in Senegal.

The reason why I am writing is to show my support. You are bright, intelligent and bubbly. You are very brave and I admire you because you turned your negative experiences into positive actions and I find it really fascinating. You are an inspiration because you really try to help other people in the same condition.

I support you to keep fighting because I know that you can make it. Never give up, keep moving forward because I am positive that you can win the battle.

I also want to congratulate you on your engagement and upcoming wedding. I wish you the best and hope that Andrew will make you happy.

Yours faithfully,

Isatou KA          

                    

Hello Anna

I am writing to you, to support you because what you are living is very difficult. You are very brave, intelligent and courageous. I hope that you will feel well after reading this message. Congratulation on your engagement. I hope that you will have a lot of happiness in your couple. You are a person who inspires me because you fight for the others who have the same disease as you.

Yours faithfully,

Mariama Bharati Fall 

 

Hello Anna

My name is Aya Dia I’m in 9th grade I live in Dakar. You are really courageous and brave. You are an inspiration because you took your illness positively. And you created a blog to help the people who had the same illness as you. 

I support you to keep fighting because you help a lot of people and I know that you can make it. So keep fighting for the people who have brain tumor.

Aya

 

Dearest Anna,

My name is Moctar Abbott, I am 15 and in 9th grade.  I am currently in a middle school called LCB that is located in Dakar, Senegal.

This week in class we have been talking about you and your amazing story. I understood that you are a person full of life which, considering your situation is extremely inspiring. As a result, I believe everyone should know about what you are currently going through. I believe that I am very privileged to be writing to you today.

I would also like to take this time to congratulate you on your engagement and wish you and your partner a great wedding.

 

Yours faithfully,

Moctar Abbott

 

Dear Anna,

My name is Malick Ndoye I am from L.C.B (a bilingual school) in Senegal (in Dakar) in 9th grade. I am writing you this letter to show you my happiness about your blog and what you are doing for people who are affected by brain tumour like you. I think that you are generous, courageous, kind and positive in what you are doing. You are an inspiration because if everyone is doing like you, a lot of people will survive to those kinds of diseases. I think you should keep on fighting for it and helping other brain tumour patients. Congratulation on your engagement and your upcoming weeding.      

Yours faithfully,

Malick Ndoye                              

 

Hi Anna,

My name is Fatou Balla Mboup. I come from Senegal. I’m a student in a school called LCB and I’m in 9thgrade.

Anna, you are one of the liveliest people I have ever heard of before. You are also very kind because of your action. Not everyone in the world will do that if they found out they just have 3 months to live. You Anna, you were fighting against the Brain Tumour and you don’t give up. You also think about other people who have the same problem as you and helping by show them they are not alone. That’s why I believe you are an inspiration.                                                  

I just want to tell you, don’t give up, continue to fight and help those people. Be brave.

You have all my support.                                                                               

 I also want to tell you, congratulation for being engaged and soon be married. You have all my wishes and hope this day will be the best for you and your future husband.                                                                                                                       

With all my support,

Fatou Balla MBOUP

 

Hello Anna

My name is Issa Kanji. I am 15 and I am writing to express my support. In my point of view, you are an amazing, courageous, smiling person who is determined to beat brain tumor. You are an inspiration to us because you are suffering from brain tumor and still getting one of the highest grades in the world.

 I support you because I know that your condition does not depend on the doctor but on how you try to fight against the disease. I am telling you this because GOD is the one that created the person that told you that you were going to die in 3 months but look, you lived a year longer and you are still doing amazing! I think it is very brave of you to decide to get married. And I am really impressed by your fiancée. Because even though you are suffering from one of the most dangerous diseases in the world, he still loves you for who you are. And it was really courageous of you to accept.

I encourage you, and hope you live longer because you DESERVE LIFE and LOVE.

Issa

 

Hi Anna!

I’m Sokhna, I’m fifteen and I am in LCB School in Dakar. I am also with your former teacher Mr. Bodian! We talked about you today in class. For me I think that you are strong not because you fight your tumor but because of the marathon of Paris. I can’t already run in sports so I think that you are brave for that. You are positive because you are smiling and staying strong and the key of success is to stay positive. It is the most important thing. I think you are an inspiration because you inspire me in working hard. You need to keep fighting because I think that you are strong and you need to fight for your friends, family and your fiancé but also for you! I think that your family is very proud of you and so are all the people who had read your blog! So congratulations on your upcoming wedding. Anna keep going like this I hope you will win this fight against your brain tumor!

PS: Listen to Stronger by Kanye West and Daft Punk because I believe the song has been written for you

Yours faithfully,

Sokhna Dabo.

 

Dear Anna,

My name is Jean-Louis Jousso, I’m in 9th Grade in a school called LCB and I live in Dakar. After reading the article about you, I can say that you are a determined and strong -minded woman. You are really courageous for fighting against this big disease. By doing that you’re saying: Never give up! You have all my support.

Congratulations on your engagement.

Yours faithfully

Jean Louis

 

 

Dear Anna,

My name is Muhammed and I study at L.C.B (Le College Bilingue). I am in 3e and I live in Senegal, Dakar. I read your story and I think that you are a very nice and courageous woman. I think you are an inspiration because thinking about other people is always a good thing and even if it is about people in the same situation. You are a very smart woman and with all the things you accomplished you don’t deserve such a thing.

But you should keep fighting, a miracle can still happen. Follow your dreams and don’t give up. I also wanted to congratulate you for your upcoming wedding and I wish it to be full of happiness.

Muhammed

 

Dear Anna,

My name is Ousseynou Ndoye. I study at L.C.B, in 9th grade. I live in Senegal. I decided to send you this message because of your act of braveness and courage. After I read your story, I was speechless! The way you reacted was just exceptional and very inspirational. You are no ordinary person but a new figure in history! A lot of people in your situation would have only thought about themselves but you did not! You decided to help others. I believe your acts of kindness can beat the Brain tumor and because you are never alone, even from Africa you have support! Congratulations on your engagement! I hope you have a peaceful and successful life!

Ousseynou

 

Dear Anna

My name is Lamine Sidy Diouf I am in 9th grade. I am in a school called LCB. I am 15 years old and I live in Dakar, Senegal. We have been talking about you and for me you are a really brave woman because if I was at your place I would be crying for three months. The way you deal with your illness really impressed me. You are positive and it is really cool!! Continue to live your life like you want and don’t give up I am your number 1 fan in Senegal. And also congratulations and good wishes for you and your partner. Happy wedding.

Yours faithfully                                                  

Lamine

 

Dear Anna

My name is Fama Mbacke. I’m 14 years old. I’m studying in LCB Dakar (Senegal). I found you really courageous and inspirational. Because I think that if it was me, I wouldn’t be that strong and positive minded. You inspire me because I really like what you are doing “showing to people in the same case of you that they are not alone”. I find this great, because I think that many people need that support that you give. I find this fascinating and encourage you to continue! I wish that you will continue fighting as you have always done.  Please never give up! Congratulation on your engagement and all the best for the future.

Yours faithfully,

Fama.

 

Dearest Anna,

My name is Ababacar Ba, I am in 9th grade, and I am from Dakar. I am writing this letter to show my support and all the attention that I carry to your situation.

You are a courageous woman and even though I have never met you, I am sure you are always merry, because you never give up and you stay positive.  I really appreciate what you did when you created a blog to show others that are in the same position that they are not alone. I wish you all the happiness in the world and that you spend a beautiful wedding with your fiancé.

Yours faithfully,

Ababacar

 

Hello Anna, my name is Kenny Araujo, I am fifteen years old and I go to school at le college bilingual de Dakar. I am in the 9th grade. I think you are a very courageous and inspiring person for not getting affected by your disease.

I encourage you to keep doing what you do because it helps people in the same situation as you are but that are not as brave as you are. And I also encourage you to keep up your fund raising activities because there are people with the same disease but can’t get treatment because they are poor. Congratulations for your upcoming wedding.                             

Kenny Araujo

************

 

Thanks again!

All my love,

Anna xxxx

POST 21: LEICESTER TIGERS HELP KICK BRAIN TUMOURS IN TO TOUCH

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As I have told you guys from POST 1 on this blog, I am a massive rugby union addict, and you all know by now, my team is the Leicester Tigers. I have been going to Tigers games home, away, and abroad since I was eight years old, and even with Trev in tow, that is not set to change anytime soon!

 

 

So you can imagine my delight when I saw this article crop up on their website this week: Show Support for Brain Tumour Campaign. Although, upsetting to hear the loss of Michael, another Tigers fan, who sadly passed away at the mere age of 27, what his family are doing to help this campaign in his memory is remarkable.

If you have been following my blog, particularly over the past few months, you might be aware that I have heavily backed the online e-petition calling for more funds for brain tumour research that was launched by Maria Lester in memory of her brother Stephen, who sadly lost his life to the disease in 2014. Months ago I signed this petition and after reaching 10,000 signatures, the petition gained a response from government, unfortunately, not the one we were looking for (this response can be found on the petition page).

Thankfully, the newly formed Petitions Committee decided that this cause was worth looking into further – particularly as it was not on the agenda for the Health Committee. They wanted to gain perspectives and evidence from charity campaigners, clinicians, and patients alike to best decide if this issue should be debated in Parliament.

The Committee launched an online web forum for people to share their experiences and to show their support for more funding into research. This closed on the 30th October 2015 with over 1100 comments left on the chat; one of those comments being my own:

“In January 2015, at 23 years of age, I was diagnosed with a Grade 3 glioma anaplastic astrocytoma and was told I had, on average, 3 years to live. My whole world changed. Although I have been offered treatment and have undergone radio/chemotherapy and I am on chemotherapy again for a further 12 months, the future looks bleak. Unavoidably, this awful disease will not only take my life, but will destroy the lives of my mother, father, sister, brother, partner, niece, nephews, aunties, friends….my, the list goes on! And since being diagnosed, I have unfortunately come across and met younger, young and older people in the exact same situation; who too worry what they will be leaving their families to deal with when they are gone. I chose to try and not dwell too much on this horrific news and to turn it into some form of positive; I want to make a difference to lives like mine, and to those who are yet to be diagnosed. I decided to start writing a blog called Inside My Head (www.annaswabey.wordpress.com) detailing my life with a terminal brain tumour – I saw this as a way of helping myself, others alike, and to raise awareness of this severely underfunded cancer (of which I knew nothing about until my diagnosis). Off the back of its popularity, I began fundraising for Brain Tumour Research Campaign (to date I have raised £35k). Research into brain tumours is my only hope of living. I will not stop fighting for more funding into research until my last breath! Forgive me, for I am not a doctor, a scientist, and I by no means profess to be an expert in the field at all, but if brain tumours kill more people under the age of 40 than any other cancer – why does research into brain tumours receive a mere 1% of national cancer research funding?! …It does baffle me. My diagnosis has changed my life forever. The only change I wish for the future is that there will be a new found hope; different treatments, and ultimately, the best ‘C’ word I will have ever heard – A CURE.”

 

Consequently the Committee invited 20 of the people who commented on the web forum to a roundtable discussion at Westminster. I was delighted to be one of those people. On the 17th November I went to the Houses of Parliament to share my experiences with the MPs on the Committee. I thought the day went very well and the MPs seemed keen to listen and were extremely empathetic. I sincerely believe this is a huge move forward for not only brain tumours on the political agenda, but also for democracy in general; obviously I feel very honoured to have been given the opportunity to be a part of that. We now await the decision of the Committee…

 

What will give us added strength however, is the more signatures we can accumulate on the e petition.

We have until February 3rd to try and reach 100,000 signatures, which will guarantee the issue of brain tumour research funding to be debated in Parliament.

 

This is my final plea to ALL who read this to sign the petition. Share it with the person you are sat next to perhaps, or a family member? Let’s get over this final hurdle!

Whatever comes of this petition  it will more than likely be too late to make a difference to my prognosis however, I am almost certain it will change lives of so many others!

This is why I sincerely want to thank my rugby club, Leicester Tigers for getting on board this campaign – it means so much! #TigersFamily

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POST 20: “STABILITY IS EVERYTHING”

First of all, I find myself needing to apologise to those of you who do not follow my Facebook Page Inside My Head, as my Facebook followers have already been made aware of the results I received from my scan that was carried out on January 4th.

The sickness I developed through fear when waiting for the results absolutely consumed me. I think I was so used to continuously being knocked back by bad news that I struggled to remain hopeful for good news this time round.

As I have mentioned before, I have been told that treatment will not shrink Trev the tumour in either location. I am undergoing this lengthy treatment with the slight hope that it may halt or at least slow the growth of Trev. It is with this hope that I continue to battle on through.

The call came; I cried.

Tears filled my eyes; tears of joy. I turned to my Mum and managed to say,

 “I am okay! I am okay, Mum! It hasn’t grown!”

Stable scan results – WOW! After sixth months of chemotherapy, let alone casting my mind back to the seven weeks of radio/chemotherapy, it all felt worthwhile. I have now completed my seventh month of this chemotherapy cycle and have more UMPFF than ever to remain strong and healthy through the final stages of the twelve month course.

The year has well and truly began with a BANG! Anna 1 – Trev 0.

Thank you to everyone who has contacted me before my scan, in the build up to my results and since the good news has been delivered. Over a year on from this journey beginning, I am still left in awe of the support and love I receive from not only my incredible fiancé, family and friends, but from people who would otherwise be complete strangers. It really does make a difference, and make me feel as though sharing this journey with you all is totally worthwhile, particularly when I hear it gives hope to others.

Stability really does feel like everything; with ‘everything’ I am very content!

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!!!