As I am super late with this blog, I decided to do it in video form instead!
Watch it here:
Lots of love,
As I am super late with this blog, I decided to do it in video form instead!
Watch it here:
Lots of love,
As promised, this post is to keep you all in the loop.
Post 23 announced the fantastic news that the Petition to gain more funding for research into brain tumours had gained over 120,000 signatures of support and as a consequence had secured a debate in Parliament. The date for this debate was to be announced after the Petitions Committee had published their report, detailing their findings from the first every inquiry to be launched by this newly formed Government Committee.
The Petitions Committee’s report has now been published. I want to highlight their key findings, let you know what happens from here, and ask for a huge favour from you all in the process…
Quoting the report:
This was the first ever inquiry by the House of Commons Petitions Committee into a subject raised by an e-petition. The Committee was set up in July 2015 and has, from the outset, aimed to give the public a direct channel to call for action from the Government and Parliament. The Government responds to all petitions with 10,000 signatures. The Committee considers all petitions with over 100,000 signatures for debate. The Committee can also seek further information, in writing or in person, about the subject of a petition, and can produce reports like this one with recommendations to the Government.
Funding for brain tumour research is a hugely complex subject. The Committee decided that it needed to gather a wide range of evidence to allow it to make recommendations to the Government. In addition to formal evidence from relevant experts, the Committee also wanted to hear the experiences of members of the public whose lives had been affected by brain tumours. Many people have contributed their own stories to assist the Committee in its work. This report presents the evidence that the Committee has heard, and calls on the Government to look closely at that evidence and to reconsider its initial response to the petition.
As you may already be aware, I was one of the 20 members of the public who were invited to share our experiences with the Committee back in November. I was absolutely delighted to be able to take part in this inquiry, and to see that points I raised and my experiences have been included in the report. I am even more delighted after having read the complete report and, most notably, the recommendations that the Petitions Committee have made to the Government.
The full report is available to read here. But I want to highlight the key conclusions they came to and the all-important recommendations to Government.
The report was split into several parts, namely: Awareness and diagnosis, Funding levels, Barriers to research, Setting research priorities, Burden of disease, Availability of non-therapeutic drugs.
The Committee’s findings in these varying areas concluded:
116.For too long, funding for brain tumour research has been inadequate and not given sufficient priority. Britain has dedicated researchers in this area but is losing young, talented people because they are unable to access research funding. The country is losing the chance to be a world leader in this area and is letting down patients and their families.
117.The Committee has heard throughout this inquiry that patients with brain tumours are failed at every stage—from diagnosis and treatment to research funding. There has been little improvement in the prognosis for brain tumour patients over the last 30 years. Brain tumours are often considered to be rare, but they are the biggest cancer killer of children and the most fatal cancer in terms of life years lost—and the incidence of brain tumours is on the rise. The number of life years lost ought to be a major factor in allocating research funding, but it is not given sufficient consideration. Where there has been significant investment into research, the outcomes for sufferers of other cancers, such as breast cancer and leukaemia, have improved dramatically. No one who took part in this inquiry wanted funding to be taken away from other cancers. What they wanted was an equal chance for some progress.
118.Funding for site-specific brain tumour research comes mostly from the voluntary sector. Charities have done incredible work to fund brain tumour research and we commend them for that. However, they face difficulties in fundraising, not least because of a lack of public awareness. The Government must not leave charities to tackle this devastating disease alone.
119.Sole responsibility for deciding on priorities for medical research and for identifying diseases with unmet need should not be left to the voluntary sector. The Government could and should take a greater lead: by playing a role in identifying gaps in funding, by setting priorities for research and by supporting the development of the research workforce required to give those suffering with a brain tumour some hope for the future.
I would also like to highlight some quotes from Maria Lester, the lady who launched the petition in the first instance alongside support from the charity Brain Tumour Research.
“For too long fundraising has been driven by the cancer community and the Government must step up and invest its fair share. There is no time to waste. It is too late to save my little brother and I will have to live with that loss for the rest of my days, but with improved funding just think how many other brothers, sisters, fathers, mothers, friends and children could still be saved”.
“At the moment more than 80% of those diagnosed with brain cancer don’t survive more than five years”.
“It’s about life and death, not criteria or process”.
I want to take this opportunity to thank Maria again, and the rest of the Realf family for so courageously and selflessly taking this matter into their own hands in memory of Stephen. He sounds like an incredible man and I only wish I could have met him. I thank you for taking this bold step on behalf of brain tumour patients like myself, I am very grateful. You should be so proud that all your hard work has resulted in this fantastic report!
I would also like to thank all of the Members of the Petitions Committee for all their hard work, empathy and dedication in producing this report. As a patient, it has filled me with great hope for the future.
Now here comes the part where I ask for support…YET AGAIN, I am sorry!
The date for the debate in Parliament on this issue has been announced: Monday April 18th 2016. We need to ensure that our MP’s attend to maximise the impact this debate can make.
I am asking you so VERY politely 🙂 if you would be able to contact your MP. Now, I realise all of you are extremely busy, and thankfully, Brain Tumour Research have made this task quite simple, as they have kindly drafted a template of a letter/email/content of a phone call that you could send/make to your MP.
I would hate for all these efforts to fall by the wayside and for us to receive a similar response from Government that we did after reaching 10,000 signatures. Having your MP in attendance could be SO vital.
If you click this link it will take you to their webpage where you can download the template. They ask you to add your “own story” where indicated. If you have your own connection to this illness, please tell your MP what it means to you; it is personal experiences of their constituents that will lead them to attend. If you know only of brain tumours because of reading my blog, then please feel free to include your personal opinions about my journey. I have written something simple below to help those of you who fit in to this latter option:
My own interest in this petition and upcoming debate came about because a friend of mine, Anna Swabey was diagnosed with a terminal brain tumour at the mere age of 23 years old. Anna was fit and healthy prior to suffering a seizure at home and had her whole life ahead of her. In January 2015 however, this all changed and Anna was told she had three years left to live. I have followed Anna’s journey thus far by reading her blog (www.annaswabey.wordpress.com) and have helped/supported/watched her fundraise over £45,000 for Brain Tumour Research Campaign. Learning all the dire statistics and reading that brain tumour patients, like Anna, are failed at every stage, I urge you to please attend this debate…
If, like I was, you are unsure who your MP actually is, you can find all their contact details here.
I thank each and every one of you who does take the time to contact your MP. If you are so inclined, please can you let me know if you do indeed get a response.
I was unfortunately too poorly to attend the launch event of the report publication on Monday 14th March; my immune system had taken a bit of a battering after month nine of chemotherapy. However, I am most certainly going to be attending Parliament on April 18th when the debate takes place!
EXCTING TIMES AHEAD!!
I have to start this post with a HUGEEEEE heartfelt thank you to each and every one of you who took the time to sign the brain tumour research funding petition. I have been hammering on about this petition and its importance for the past six months; pleading with you all for signatures, informing you about my trip to the Houses of Parliament, and then pleading some more! But I am so delighted to inform you that it was all worthwhile!
On Friday morning, 29th January, indeed sooner than the February 3rd deadline, the petition reached that all important ONE HUNDRED THOUSAND signatures mark!
Reaching this target was a massive team effort from many in the ‘brain tumour community’ as I call it. But I would like to take this opportunity to congratulate Maria Lester who launched the petition in memory of her late brother Stephen. You so deserved this result, Maria, and as a brain tumour patient, I thank you for taking that first bold step! Stephen, I also thank you for the inspiration – what a fitting tribute.
The petition has now reached almost 120,000 signatures – simply incredible!
Even better, it has now been confirmed that, once the report from the Petitions Committee (the inquiry I attended) has been published, a date will be set for the issue to be debated in Parliament!
I reiterate my huge amount of gratitude and promise to keep you in the loop with future developments.
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
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.
Who I was:
Who I am now:
Who I want to be:
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!!!
On completion of my fifth round of chemo (almost half way there!!), I thought I would fill you in on all my recent moans and groans, antics and updates…
First, let’s tackle the nasty stuff. Chemo has slowly become slightly easier; knackering, but, touch wood, my anti sickness medication seems to be doing the trick! (I literally am touching our kitchen table right now!!). My headaches have become slightly worse – but I am trying my hardest not to let them take over my life and to not overdo it with the pain killers! Although, I had a really bad one last night, as I got into bed. A tired, grouchy Anna, with a killer headache did not lead to good things…thankfully Andy was there for me to have a good old weep on his shoulder! (which incidentally made my headache worse – darn it!!!). The only other thing to report is that I have had quite bad pains in my diaphragm region and my back (rib area). To begin with they left me feeling very short of breath and panicky. As they continued, I became much calmer, as I knew it would stop and I could breathe!!! Having complained about the pain to my Mum though, she said it could be something as simple as trapped wind – embarrassing! I told my doctor and she suggested increasing the dosage of Omeprazole (a drug I take to protect my stomach, particularly from steroids). She thought it may be related to the extended period of time I have been on the steroids for – so I am rolling with that one and not wind! Haha!
On another note, my hair is slowly growing back. Albeit it is growing back practically BLACK and what looks to be CURLY – newest nicknames are microphone head or Kammy (Chris Kamara)! To be honest, I am loving the wig life (words I never thought I would type!). I get ready soooooo much quicker now and my hair always looks “did”. Who likes having real hair anyway?!
In terms of the other side of my life, living…I am happy to say I have been doing a lot of that and have been a busy lil’ bee! And I can’t just tell you guys about the horrible stuff, right?!
So, rugby mad that I am, I was rather chuffed to be off work sick and be able watch almost every single match during the World Cup (every cloud…). What made me even happier was being able to attend not one, not two, but THREE matches! I hope this doesn’t put some of my readers off – but I am well and truly a Welsh supporter, as a consequence of my Dad’s upbringing. England vs. Wales at Twickenham; we were sat Andy (England shirt), me (Wales shirt), Mum (England shirt), Dad (Wales shirt). And for those of you who don’t know….WALES WON!!!!!!! I had such a brilliant day at Twickers!
Next stop, Millenium Stadium, Cardiff for Wales vs. Fiji; Father and daughter trip to Cardiff – bloomin’ marvellous; another victory!
Wales were through to the Quarter Finals WOOOOOOOOO! I simply had to get tickets! Twickenham; Dad and I; they may not have won, but the boys did us proud! Rugby outburst complete (well, not for long – back to Leicester Tigers this Friday!)
What else has been going on? – Jill and Alan, Andy’s parents organised a charity night that was thoroughly enjoyed by all. I loved seeing some familiar faces and meeting many, many new ones too. A special thank you for a fab night and to everyone who came out for it, over £700 was raised for BTRC!
I was also invited to attend the local Rotary Club meeting as their guest speaker. I spoke of my “journey” and my aims. I went in quite ignorant really to how these organisations work and, I have to admit, I was quite nervous. My goodness did those nerves fly away quickly! Everyone was SO lovely! I shared my experiences and enjoyed delightful company. Since my attendance, I have been contacted to tell me that they have decided to donate to BTRC as they were so moved by my speech – ever so grateful!!!
Next on my list must be a puppy update I reckon – she is as beautiful as ever, just slowly growing longer and longer legs! She definitely seems to have calmed down a lot and is enjoying more cuddle time now which I am LOVING!
Now, I feel I have saved the most important and encouraging news to tell you until last.
People who follow my updates on Facebook too, have hopefully already seen the e petition I shared a while ago, calling for more funding to be given to brain tumour research (still accessible to sign here, which I plead with you to add your names to – takes two tics).
As you can read using the link above, a lady called Maria Lester, who sadly lost her brother Stephen Realf to a brain tumour, aged just 26, set up an e petition in his memory to gain more funding into brain tumour research from the government. After reaching 10,000 signatures, the petition gained a response (can be read by clicking on the link), unfortunately, not the one we were looking for 😦 .
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. This link highlights why they decided to launch their first inquiry as a result of this petition.
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 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….my, the list goes on! And since being diagnosed, I have unfortunately come across and met young and older people in the exact same situation; and worrying 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 (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. 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; in my eyes, 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 life has changed forever, the only other way I want other peoples life to change is that there will be a new found hope; different treatments, and ultimately, the best ‘C’ word I will ever have heard – A CURE.”
Since then, the Petitions Committee have invited 20 patients to a roundtable discussion at Westminster. I am delighted to say that I am one of those people.
Next Tuesday, 17th November, I will be heading to the Houses of Parliament to share my experiences with the MPs on the Committee. 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 a chance to be a part of that.
I was on Metro radio again today talking about it, and will be again around the time of my trip to Parliament – all fantastic awareness that has left me feeling more positive! Here is the link to the news item on their website.
Oh and on a happy, lovey dovey, personal note: Andy and I are moving in together! I will get a housewarming arranged ASAP and you are all invited 😛