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!

My 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 10^th March, so I do not have to travel back down from the North East again the following week, and, if it is on the 17^th March…..I have tickets to see Usher in Newcastle on the 18^th – GUTTED! (I jest, I jest  – I will be grateful for any day; but if it is the 17^th – get in touch if you want 2 X Usher tickets!!!).

The Brain Tumour Research Campaign

To 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

POST 1: Life with a Brain Tumour

Hi I am Anna Louise Swabey, I am 23 years old and I have recently been diagnosed with a brain tumour. (It still feels bizarre when I write that down or say it out loud.)

I have decided to start writing about my ‘brain tumour journey’, in the form of this blog “Inside My Head”.

Why start a blog?

By writing this blog I hope to achieve 4 things:

1. On a selfish level, I am hoping that expressing my thoughts and feelings during this difficult time will be a good coping mechanism for me.
2. I want to support others who may be experiencing a similar battle. Even if one person reads one blog post and can relate to how I am feeling, and it makes them feel like they are not alone, I will view that as a success.
3. I want to raise awareness of Brain Tumours themselves. Before I was diagnosed, I knew absolutely nothing about the illness. Now, after further research, I have discovered that brain tumours kill more people under the age of 40 than any other cancer. It is, however, unfortunate to say that even though this is such a life destroying cancer, and we need to do soooooo much more research, it only receives 1% of national cancer research funding. This NEEDS to change!
4. I want to raise as much money as possible for brain tumour research charities, in the hope that this may help, not only my prognosis, but other people’s, and, so that in the future, other people do not have to experience this journey at all.

Who was/Who is/ Who will be Anna Swabey?

In this first post I would like to introduce myself a bit further… Who I was; who I am now; and who I want to be in the future.

Who I was:

• Up until January 9^th 2015, I was living a completely ‘normal’ life (although, if we are being honest, I don’t think anybody would have ever of described me as ‘normal’!)
• I studied Languages and European studies at the University of Portsmouth, and was delighted to graduate with a First Class Honours degree in 2013.
• I have always been a very active person, and have a particular love for netball. My fondest memories from University involve the amazing times I shared with the girls from the University Netball Team.

• Not only have I enjoyed playing sports, I am a keen spectator also. I am a MASSIVE Rugby Union fan, and had a season ticket for Leicester tigers since I was 8 years old. Living down in Portsmouth made it more difficult to get to matches, however the 3 hour drive was always worth it! My parents and I have travelled Europe supporting our team also. My football team is Stoke City, so all in all, when it comes to sport, I am a bit of a lad!
• That isn’t to say however that I am not a girly girl when it comes to fashion, make up, taking “selfies” etc….as I most definitely am!
• I was a very sociable person, a bit of a chatterbox and friends often compared me to my comic idol, Miranda – tall, a bit clumsy, and always getting myself into awkward social situations!
• I have always been very family orientated. I am very close to my parents, my sister, my brother, my niece and my four nephews. The only difficulty being, that as I chose to go to University in Portsmouth, the majority of my family live up in the North East of England.
• I have always been a big kid at heart, and I am obsessed with Disney. My Mum, Sister, my niece and two of my nephews and I went to Disneyland, Florida for two weeks last summer – WOW!

                 

• I was always very ambitious, I always wanted to be successful, and I was determined I was going to have an amazing career. Throughout my life, I have been a perfectionist, never settled for being just average.

         

• Although leading a very, as I said, ‘normal’ life, the only thing looking back that could have had any possible significance to my current situation was when I was 14 years old. I started suffering from severe shooting pains/headaches in varying locations in my head. These pains would only last for about 15-30 seconds and then progress into a throbbing headache. As these became more regular, I went to the doctors and ended up having an MRI scan. This scan showed a tiny lesion/ shadow on my brain, however it was that small, that nothing more was done about it and these pains/headaches were put down to stress.
• On the 9^th January 2015 I had a seizure at home (gutted because I was getting ready to go to the pub!) and I was taken into hospital via an ambulance. When I was in hospital I suffered a further two seizures, I had a CT scan and an MRI scan over the weekend and this was when my life changed forever…

Who I am now:

• I’m still Anna Louise Swabey, i’m still 23 years old, and I still have exactly the same passions and ambition as detailed above. I am still exactly the same person, however, unfortunately, after receiving my biopsy results on February 3^rd 2015, I have been diagnosed with a Grade 3 Glioma, Anaplastic Astrocytoma Brain Tumour.
• Due to the intrinsic nature of my brain tumour I was told from day one that the tumour is unfortunately inoperable, so I was just about coming to grips with the fact I would be living with it forever, regardless of what treatment could be offered. On receiving my biopsy results that day however, I was then told that it is a particularly aggressive type of tumour and also terminal, and I was given a time scale of months to a maximum of 3 years to live. No words can describe how hearing that news felt, however I will be writing a post to at least try and express my emotions that day and onwards regarding the prognosis.
• I am very lucky to have an extremely supportive family and set of friends around me and I am now living with my family in the North East after having to leave my life in Portsmouth. Again taking the positives out this horrific situation, I am loving being able to see them every day, even though it is under these circumstances.
• I have always been a ‘tough cookie’ and I am trying to remain as strong and positive as possible, but I certainly wouldn’t be in this positive frame of mind without the love of my nearest and dearest. It is true what they say, it is at times like these you realise how blessed you really are!
• Now I am ready to give ‘Trev the tumour’ – yes that’s right we have named the bugger- a real good fight!
• I have been banned from driving because of my seizures.
• I am signed off sick from work and I am awaiting news of when my treatment can start.

Who I want to be:

• I want to defy my prognosis, I WILL live till I am old, I WILL get married and I WILL have children and I WILL have the life I have always dreamt of! But, I am by no means naive, and I understand it’s going to be very tough and some compromises will no doubt have to be made.
• I want to make a difference in the world and leave a mark. Now this issue is so close to my heart, I want to raise awareness about brain tumours and the devastating affects they can have on people’s lives.
• I want to raise lots of money for brain tumour research charities to ensure that, in the future, nobody has to experience this awful disease and many more treatments are readily available and we can find a cure to save my life and many others alike.
• I am hoping that this blog will be a good start!

Thank you for taking the time to read what I hope will be the start of many posts to come 🙂