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 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 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 12: WHERE TO GO FROM HERE…?

Hello!

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

(Written roughly w/c 29th June 2015)

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

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

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

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

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

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

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

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

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

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

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

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

TWENTY SEVEN THOUSAND POUNDS!

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

change lives quote

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

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

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

pick yourself up

Scan Results

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

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

facebook post number 1facebook post number 2

Trev, the bastard, had grown 😦 .