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 9: CINDERELLA DID GO TO THE BALL…

As promised…

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

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

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

blog cinderella and me

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

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

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

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

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

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

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

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

Enjoy your evening

Kevin O’Neill

Consultant Neurosurgeon Head of Neurosurgery Imperial College Healthcare NHS Trust

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

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

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

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

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

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

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

balloon drop

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

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

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

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

Me mum and dad

POST 7: KEEPING YOU ALL “INSIDE MY HEAD”

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

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

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

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

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

file-page1

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

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

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

 

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

 Mask 1 Mask2 Mask3

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

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

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

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

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

 

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

All my love,

Anna

 Thank you!

 

POST 3: EXCITING UPDATES!

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

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

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

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

Screenshot_2015-03-07-19-53-15

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

She has set herself the target of raising £800, but I think you amazing people can help us smash that target and smash Trev right in the face ! Please give as much or as little as you possibly can…..now it’s time to start making a REAL difference – let’s beat brain cancer!!!!!!!IMG-20150307-WA0019

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

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

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

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

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

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

Minions

Thank you as ever!

All my love, Anna xxx

POST 2: The Journey Starts Here…

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

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

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

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

42ec91f0107f2ec86813b1657cb07706My tumour can never be fully removed, but Kevin is keen to carry out a procedure called partial reception.  Part of my tumour covers both sides of my brain, which means operating on that particular area would have far too high a risk. The majority however is on the front, right side of my brain, and is much more accessible.

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

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

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

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

The Brain Tumour Research Campaign

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

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

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

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

I look forward to updating you again very soon!

All my love and thanks as ever,

Anna

01b99eb6872ed0fbc2e6547d4ac7b3ac