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

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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 4: AHHH HE IS ACTUALLY GOING INSIDE MY HEAD….

As many of you may know if you have read my posts below….I am scheduled to have my brain surgery (partial resection) on Tuesday! Today is Friday….that leaves me with FOUR days until op day (*dramatic music*)

I wanted to post today just to try and get some of my nervous thoughts and energy out of my system and to try and give an insight into some of the worries that are going through my head. I want to use it to vent some of the uncertainty that is all built up inside of me, so then for the next few days I can put all those worries into a little box, pack it away and try to keep myself as busy as possible until Monday when I will be admitted to Charing Cross.

I am very much aware, particularly with the help from the lovely ladies at the Maggie’s Centre at the Freemans Hospital, Newcastle, that there is no point worrying about things that are completely out of my control, as it all just spirals out of control! If you have not come across the work of the Maggie’s Centre before, they are INCREDIBLE!

Built in the grounds of NHS cancer hospitals, Maggie’s Centres are places with professional staff on hand to offer the support people need and there are now 17 centres across the UK. I have now been to a few Brain Tumour specific support groups at the Freemans hospital Centre, and just popped in to relax and have a chat in between hospital appointments at the Centre at Charing Cross. The session I attended last month at the Maggie’s Centre has been able to help me a lot this past week….we spoke about how to deal with uncertainty, of which there has been, and still is A LOT of in my life at the moment. This session was invaluable to me, particularly as I am a complete and utter control freak and I hate not knowing exactly what is going on. Although having had discussions with my “super surgeon”, Kevin O’Neill, I still don’t really exactly know what is going to happen, how much pain I will be in afterwards, how big my scar will be, how much hair they will have to shave off, if there will be any major side effects….the list goes on.

The lovely ladies at the Freeman’s Maggie’s Centre explained how sometimes questioning each and every one of these worries and uncertainties can be detrimental to my positive outlook, because the likelihood is, that I don’t have the answers and these things are completely out of my control. Thereforee9dfb595a8289e373c0c7fb169eeb036 what it is better and more beneficial to concentrate on, is the things, albeit how small, that I can control. Writing my blog and using this as a means to release my thoughts is in my control, remaining as positive and upbeat as possible is in my control, and making a difference is in my control (with your support of course)….and that is the path I have chosen to follow!

Right, so control freak Anna – let’s use this post to vent my worries:

I think my main worry, that may seem silly to some of you who have had operations under general anaesthetic before, is the thought of not waking up! I have never had general anaesthetic before – my first biopsy operation was awake surgery; I was lightly sedated and had local anaesthetic injected into my scalp. The control freak that I am, I was weirdly quite thankful for being awake, as I knew exactly what was going on, even if I did have to endure the ridiculous noise of the drill :/!! Although the prospect of being awake during brain surgery seemed to freak everyone else out, I am in fact more nervous about being asleep this time around. The operation is due to take about 3-4 hours I have been told and I have been told to expect to be kept in a further 3-4 days to recover.

There are obviously risks, as with any major surgery, which again, if I dwell on would probably drive me insane and lead me to call off the operation all together! The main risk I have been warned of is that I may lose movement or feeling in the left hand side of my body. Currently, this doesn’t worry  me too much – to me, this is a small price to pay to potentially be able to live and spend a few more months/a year/years with the incredible people in my life. It would obviously affect my day to day life for the time I do have left, but I am almost positive this won’t be the case…always trust your gut instincts – see I do listen to you, Mother!

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I do, bizarrely, feel very lucky to be in the position I am in, in terms of finding Kevin, and him being keen and confident to operate and partially resect a sizeable chunk of the Trev. Taking this into account, I am quite excited to undergo the surgery and see what kind of a difference, if any, it can make to my progress, future treatment results (i.e radiotherapy), and my prognosis . I am hoping to up the ante on the score card front and it look more like Anna 2 – Trev 0.

Taking all of that out of the picture, and just being completely emotional….I AM SO NERVOUS!! I think it is only hitting me at certain times, on certain days, what on earth has gone on, is going on and what will be happening next week! It really is crazy! I am a bit worried as I haven’t had a breakdown over the past week and a half. Comments and messages I have received off the back of my blog etc have made me shed tears, but mainly because I cannot get over the kindness of my family, friends, blasts from the past, or complete strangers! But an absolute sob, I haven’t had. Although, as I am sure you have got the gist of by now, I am a very positive and strong person, I also believe it is important to be weak at times and have a good cry….although it helps with nothing, changes nothing, everyone needs to have an emotional release to keep you sane! I wonder if one is due to arrive before Tuesday…?!

When I was coming around from my biopsy operation at the beginning of February, I could not control the tears. I was lying in my hospital bed, with either my Mum or Dad in the seat beside me so I could grasp on to their hand (they took shifts so their hand didn’t end up falling off! ). I would be lying there, head throbbing from the surgery, but perfectly quiet and calm, eyes shut, and the next minute, tears would be streaming down my face! And this would then have a domino effect on the parent in the chair! The people on my ward must have thought we were absolute nutters! The emotion just crept up on me each time and came from absolutely nowhere. At least this time I am prepared for the tears to turn up without warning!

Speaking of my parents, I am fortunate, particularly with my surgery being in London, that they are both 7c30dc9a4a71e4c3b3c33bbcb05450e3going to be able to be with me the whole of next week. I hate, more than anything, trying to imagine myself in their shoes, particularly when I am wheeled away on my bed and during the 3-4 hours when I am in surgery. The worry they must and will experience is horrible to think of. Furthermore, with my surgery being in London, the remainder of my family will not be able to visit me in hospital due to us all living up in the North East. Again, I don’t like thinking about what they will be going through and how helpless they will feel being so far away. Although I know these scenarios are not my fault and are completely out of my control, I almost feel like I am inflicting these horrible feelings on to the ones I love the most and a feeling of guilt creeps up on me when I think about it too much

On a lighter note, if anyone has any suggestions for how I can wind up my loved ones when I do come out of surgery fine, I would appreciate any ideas on a postcard!…. I was thinking of, as I heard it has happened…to pretend that I can only speak a foreign language (leaning towards mandarin as they would have no clue if what I was saying is right anyway – and I was learning mandarin at work before my diagnosis!).

If I have to think of the worst scenario, and if anything is to go completely wrong (again, I know it won’t – gut feelings are the best), I just hope that I am still in a position, health wise, to be able to keep raising awareness and money for brain tumours and BTRC. If I am not, PLEASE continue to help this cause so that in the future, nobody has to even contemplate processing these types of thoughts that are going through my head right now.

Thank you for lending me your ears today, and I will be sure to make my sister, Victoria, (would hate to see my parents have a go at uploading anything on here) updates you all when I have come around from my operation.

me and sis

I have a general Just Giving Page now, so for those who feel so inclined….Even if it just a £ 1 donation, I will be so grateful!!!!

DONATE HERE

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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.

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  • 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

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