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

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

 

 

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

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

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

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

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

 

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

 

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

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

 

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

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

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

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POST 20: “STABILITY IS EVERYTHING”

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

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

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

The call came; I cried.

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

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

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

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

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

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

POST 19: LIFE WITH A BRAIN TUMOUR PART II

 

To wrap up 2015, and the mad year I have had, I want to briefly replicate the first post I wrote at the beginning of last year (where did that time go?!). I want to give you an insight into the updated version; who I was, who I am, who I will be.

Anna Swabey

Who I was:

  • I was a 23 year old girl, dealt the worst of hands; told that I had roughly 3 years to live.post op
  • I didn’t know where to turn, what to say, what to do.
  • I had no idea why cancer had chosen me; a young, fit, healthy girl?!
  • I was heartbroken – not set to ever marry or have children; not set to live my dreams.
  • I was trying to hold it all together for my family.
  • I was determined to live; I had to fight.
  • I had two brain operations.Mask 1
  • I was sick, exhausted, and experiencing gruelling treatment.
  • I needed a focus; I had to help others, and I needed to fundraise in order to help find more treatments and, ultimately, a cure.

 

Who I am now:

  • I am Anna Swabey, a 24 year old woman, campaigning to obtain more funding for brain tumour research.
  • I am engaged to be married to my dream man; a mummy to a gorgeous puppy.
  • Together, since March, we have raised almost £37,000 for Brain Tumour Research Campaign.
  • I have attended the Houses of Parliament to share my experiences with the Petitions Committee.
  • I have met and spoken to the most incredibly inspiring young people, experiencing a similar, if not identical, illness.
  • I am still undergoing chemotherapy treatment; still determined to fight Trev.
  • I am training to run the Paris marathon.
  • I am in awe that I have over 86,000 views of my blog!

 

Who I want to be:

  • I want to be alive for many more years to come.
  • I want to be a wife.
  • I want to raise £100,000 for BTRC.
  • I want to continue to share my journey, in the hope of making a difference to people and families who are yet to be dealt the blow we have.
  • I want to remain tough and keep fighting.
  • I want to complete the Paris Marathon.
  • I want to keep positive, keep smiling, and keep being ME (i.e. a bit of a nutter 😛 ) !

 

I am determined that 2016 will be a good year for my entire family and I. I can’t wait to see what this year holds for my new little family unit; Anna, Andrew and Enid. I can’t wait to see, with your help, how much of a difference we can make to brain tumour research and to patients lives, just like mine.

I thank you all for supporting me throughout 2015, and I hope you continue to follow my progress and campaigning in 2016.

Finally, I wish you all….

A VERY HAPPY NEW YEAR!!!