Re-Affirmation

Facebook Post 11th February 2017 – I try so hard over the years to believe. Each time I try it works for a bit and then I fall.

 

Ok. I promise to try really hard to believe.

It is hard for me so bear with me.

I am a good person (I have always known that and have always tried to be).

I am kind, loyal, friendly, helpful, open, trustworthy, polite, caring and brave.

I am a good mum but I know I make mistakes. My children are polite, sensitive and caring (except to each other but that is sibling normality) and they are bright and questioning.

I am awesome…..that is a toughie……makes me sound big headed so I will park that one for a bit.

I think I have done well for one day.

Waiting for the darkness to fall first before donating?

Tonight I am confused, bewildered and saddened. I should be feeling elated but feel totally the opposite. Blogging to see if, by putting it down in here it makes more sense to me. Doubt it but worth a try.

Yesterday I was told about a young lady who had an aggressive brain tumour and whose family needed to raise £160,000 for her to go abroad for treatment. All my charity donations now go to Ellie’s Fund Brain Tumour Trust so I did the other thing I can do fairly well – I logged into Twitter and I started tweeting the link to the gofundme page. I tweeted celebrities, people with high numbers of followers, my “regular re-tweeters” plus many more. I tweeted, they re-tweeted, people donated and it helped the target become reachable and then reached. I know there were an awful lot of people involved but I felt I had done my bit hence why I should be elated as this young lady now has a shot at getting this treatment however I can’t help but feel “let down” somehow.

After the target was hit I started tweeting about Ellie’s Mum, Heather’s, Macchu Picchu trek to see if I could help her get closer to her £5,000 target. Not one RT. Not one donation. It got me thinking – why is it people feel more motivated to donate when there is an obvious life at risk rather than “just research”? Why do they have to wait for a “reason” to be able to reach into their pocket and donate – even just £1.

I understand, logically, that it is because they can see the person whose life is at stake. They can relate to someone rather than a cause but there are so many children in this same situation, so many families trying to deal with a child with a brain tumour yet research is so underfunded that the number of children dying from a brain tumour in 2007 was 33% HIGHER than in 2001.

It costs £3,000 a day to run the lab that Ellie’s Fund BTT supports. £3,000 a day to try and find the cure for the biggest cancer killer of UK children and if we could raise the same amount of money in as short a period of time as trying to send one young person abroad it would keep the lab open for 53 days. Maybe a breakthrough would be found in those 53 days which would held people all around the world. Maybe not but it would give the scientists the opportunity to find it.

So I try and raise funds for research but the darkness isn’t imminent and it doesn’t have a face so people turn the other way, they close their purses and they “forget” until the next time they see a face.

Please don’t misunderstand me – I am glad this young lady has reached the needed target (although would much rather she wasn’t ill in the first place), that I played a small part in it and I am glad that she now has a chance at a treatment that may work but I am saddened that her darkness falling is what has made people sit up and take notice.

I just need to find a way for people to donate in the light rather than waiting for the darkness to fall. Any ideas gratefully received.

Baby Bums Battling Brain Tumours

Wow! Since this was blogged things have moved on dramatically. We now collect a variety of other items for recycling – including Ella’s Kitchen food pouches, air triggers, biscuit wrappers and more. We have raised over £38,000 for research into brain tumours and made many many new friends.

The link for the FB page has changed now as well:

https://www.facebook.com/recyclingforelliesfundbtt

mummymultitasker

Quietly and behind the scenes babies are uniting and going to war – against brain tumours.

Well not physically and knowingly but their parents and carers are by cleaning these babies’ bums….and hands……and faces……and torsos…..and highchairs……and – well you get the idea.

It is what they do next that is the important bit. They empty their baby wipe packets and do what an awful lot of other parents and carers around the country are doing…… they save them.

Yup. They are no longer putting their empty baby wipe packets in the bin to go into landfill. They are putting them in boxes and bags and saving them until they get at least 4kg in weight and then they wrap them up, get a label emailed to them and send them off to be recycled.

But why are they bothering? Because they know that they are in a revolution and helping…

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Fly high on butterfly wings. :(

Today the sad news came from America that Brittany Maynard has ended her own battle against glioblastoma after moving to a State that allows people to “die with dignity”. She knew that the future was full of bleak, ever-increasing pain and hurt both for her and her loved ones. She made the choice to save them that hurt so they could remember her as the vibrant, beautiful young woman she was.

This is such a brave decision to make and yet today I saw her called a “coward, selfish and going against God’s will” because she didn’t “fight to the end”. This made me so very angry. How can someone who has never been in her shoes possibly have any inkling of what must have been gone through to reach that decision? I am grateful that none of my family have ever been through this however I have met many people now who have or are going through it and it isn’t nice. Brittany Maynard making that that decision, in my opinion, is one of the bravest most selfless things anyone can do because she knew that she would be cutting short the time that her family had with her and some people believe she should have fought and “let God” decide when it was time for her to go.

Now I m a little confused about God at the moment and do not know whether I believe or not – I waver – however I am sure that if God is as good as he is made out to be he wouldn’t want to see so many people suffer as they watch their loved one slip away. Surely not?? Someone enlighten me please.

I hope I am never in the situation that Brittany found herself yet I hope I could emulate her strength if I did.

Fly high on butterfly wings and dance in the sky with Ellie. xxx

RIP Brittany Maynard – 19th November 1984 – 1st November 2014

Baby Bums Battling Brain Tumours

Quietly and behind the scenes babies are uniting and going to war – against brain tumours.

Well not physically and knowingly but their parents and carers are by cleaning these babies’ bums….and hands……and faces……and torsos…..and highchairs……and – well you get the idea.

It is what they do next that is the important bit. They empty their baby wipe packets and do what an awful lot of other parents and carers around the country are doing…… they save them.

Yup. They are no longer putting their empty baby wipe packets in the bin to go into landfill. They are putting them in boxes and bags and saving them until they get at least 4kg in weight and then they wrap them up, get a label emailed to them and send them off to be recycled.

But why are they bothering? Because they know that they are in a revolution and helping to fight a war against brain tumours. Because every single packet that gets sent in results in 2p being sent to Ellie’s Fund Brain Tumour Trust and since the campaign went surprisingly national on 23rd February 2012 we have raised over £20,000. A phenomenal amount when you consider it is “only” 2p per packet that gets donated.

Maybe these babies know something and that is why they keep blessing us with those wonderfully pungent offerings that they do. Maybe that is why they will happily and systematically pull wet wipe out of wet wipe out of its packet smiling innocently when mummy walks in and sees them sitting in a cloud of wet wipes and an empty packet. Maybe they secretly know and they are the force behind this war – instead of us.

Our aim is to raise £25,000 by the end of the year and I reckon that we, and our army of babies, can easily achieve it.

If you do read my blog and haven’t yet found out about the collection then all the information you need is at http://www.elliesfund.com/events-calendar.php or you can find the Facebook page at https://www.facebook.com/elliesfundbabywipecollection or you can always talk to me about it 😀 I am always happy to talk about baby wipes as some of you already know 😀

An inspirational woman – official!

Okay so this is another long one (yep you know me!!) but I think this deserves the telling – not for me but for an inspirational lady.

Those of you who know me either personally or because of my blog will know that I am very passionate about raising awareness about brain tumours and the woeful lack of funding and awareness despite it being the biggest cancer killer of UK children nowadays.

The reason behind all of this is because of a chance spotting of a poster on Facebook – It’s all —-here—-> http://wp.me/p3fpRv-34

Heather, Ellie’s Mum, had inspired so many people that I decided to nominate her for a “Shining Online” award for Women Inspiring Women with the following nomination….

“Heather’s oldest daughter, Ellie, was diagnosed with a brain tumour when she was 11 and was given 6 months to live. Ellie fought for the next 3 years against two tumors but, sadly, lost her fight on Valentine’s Day 2010.

Since Ellie’s passing Heather has worked tirelessly to raise awareness of brain tumours both in children and in adults and set up “Ellie’s Fund Brain Tumour Trust – www.elliesfund.com ” to raise funds for research into brain tumours and to also be able to support families across Yorkshire and Humberside who have a child with a brain tumour, in the form of a grant, usually £500, to help in whatever way is most helpful to them, whether it be to pay bills, buy equipment or create memories.

She took advantage of the “Wipe Out Waste” campaign organised by Johnson & Johnson and started encouraging people to collect their empty baby wipe packets earning 2p per packet towards research. Since she joined that scheme in February of 2012 she has inspired thousands of people nationwide to send in their empty baby wipe packets resulting in the following figures (as of 03/05/13):
£15,530.38 raised towards research.

763,571 packets kept out of landfill.

Several Facebook pages reaching nearly 12, 000 people who are now more aware of brain tumours and their consequences than ever before – the main collection page https://www.facebook.com/elliesfundbabywipecollection has nearly 7500 ‘likes’

In under 3 years this little charity has raised over £108 000; Heather works at it full-time, supported by a small band of volunteers who help at events, and 3 ladies who help to manage the baby wipe packet emails.

She continues to inspire people to collect empty baby wipe packets and discuss brain tumors despite dealing with the grief of her loss and also helping her other children to deal with their loss.

People across the country look up to her and find her strength inspirational. I know I certainly do and am honoured to have actually met her a few times now.

I think Heather should be your winner as she is fantastic, inspirational and has given me and others a purpose in life – to help her in her mission to raise awareness of, and funds for research into, the biggest cancer killer of UK children.”

Last night she and I attended the awards ceremony. I was nervous enough so goodness knows how Heather was feeling but we got glammed up, entered the room with many other glammed up ladies and  few “handsomed” up gentlemen and the proceedings started.

With dinner eaten and the ceremony started there was a little while to wait for a few other categories. We listened to the (sometimes gushy) thank you speeches getting more and more nervous (well I assume Heather was as well!) with an air of trepidation. Heather had read me and bullet-pointed her speech earlier in the day (just in case) and it was totally different to the speeches that were being made. They were awards for “motivational team leaders, business mentors and trainers” and the speeches reflected that. Heather’s was a shoot from the hip, felt from the heart speech and I hoped upon hope that she would be lucky enough to win so she could make it.

It got to “our” category and the nominations were read out – nine names in all – and then a gold envelope – “And the winner is…..” Heather!

Our table erupted in huge applause and a standing ovation (bear in mind only Heather and I knew each other and the rest of the table had just met us but we had chatted and they’d learnt about Ellie’s story) and tears were immediately in my eyes. I think Heather was probably cursing me again about now 😉 but it wasn’t just me who thought she deserved this – people from around the country who had never met her had voted and given her a platform….

a platform that she firstly apologised for taking as she advised people that her speech was going to be a serious one but then she gave it. In my eyes it was the first of three genuine speeches on the evening.

It was factual – raising many reactions from people around the room as she stated how little funding there is (0.7% of all CRUK funds), how the survival rate hadn’t increased in 40 years, how her own daughter had succumbed to an adult tumour despite her only being 14 – it was informative and it was heartbreaking but it did its job. On her finishing she had another standing ovation – with many others in the room joining in. No gushiness, no “Oscar performance” but a reality check that hit home in a way that it made people think – hopefully in a positive way.

I am so proud of Heather and what she has achieved and so happy that her work and those who work with her has been recognised. She truly, truly deserves this award and recognition and, hopefully, it can go a way towards a change for the better.

Love ya Heather!

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Wear A Hat for What???? Brain Tumour Awareness What Else?

Today – 28th March – is Wear a Hat for Brain Tumour Awareness Day and I will be wearing a hat to do just that. I will be wearing one of the children’s hats (I think it belongs to Jack) and it isn’t the sort of thing I would normally wear but I want people to look at me and think me stranger than normal! I want people to give me that inquisitive “She’s off her rocker” look so I can tell them about why I am wearing it. I want people to know about brain tumours.

Some facts – yes I know many of my friends will already have seen me post about this hundreds of times but, for those that haven’t, here are some VERY scary facts!

Brain Tumours kill more UK children than any other cancer – including leukemia

It kills more men than any other cancer.

It kills more women under 35 than breast cancer and more men under 45 than prostate cancer which both receive more funding.

It receives less than 1% of the money that CRUK puts into research.

That doesn’t really make any sense. It kills more than any other cancer yet has a pittance spent on it? I can’t get my head around that.

Brain tumours don’t have “triggers”. It isn’t like lung cancer that you know you are at greater risk of if you smoke. It doesn’t distinguish between age, race, religion, lifestyle, gender, anything. It attacks with no care for who it attacks and it can attack viciously. I know of babies and toddlers who have them and i have met a large number of adults who have had or still have them. I have seen how it can devastate families and I can’t even begin to understand what these families are going through but what I can do is my best to raise awareness and wear my hat and spread the word.

Maybe others will follow suit and wear their hats and hopefully we will get people aware of this terrible, terrible killer and hopefully people will “get” my passion for raising awareness.

If not – I am happy to tell you more. 😀

This is my hat I am thinking of wearing….. what do you think?

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Grabbed by Wiping Out Waste

Just over twelve months ago I saw  poster to “Wipe Out Waste” and raise money for a charity called Ellie’s Fund Brain Tumour Trust – http://www.elliesfund.com

I saw a poster and ignored it. The friend whose Facebook wall I saw it on is a bit of a champion of causes (sorry my lovely!! Hope you still love me) and I gave it a cursory glance.

I saw the same poster a few days later. This time it was on the wall of a different Facebook friend who tends not to share too much. This time I looked. It was asking people to collect baby wipe packets.

I have three children, 5 years and under at that time, and have been throwing away my empty packets for the best part of 6 years. “I can collect a few” I thought but my memory is useless (three young children do that to you!) so what could I do to remind myself to collect them?

Then I was inspired. I set up a Facebook event for a month. It would sit on the side of my FB page and it would remind me and hopefully by the end of the month I would have got it into my forgetful mind to collect them. I duly invited all my local mummy friends to my event and thought maybe just maybe, I’d get about 50 friends collecting with me.

I hit the go live button at about 10pm on 23rd February 2012. By midnight on the 24th February I was sobbing watching the 2,000th person confirm that they would “attend” the event. Another 40,000 had been invited!

I discovered about six months later that 23rd February was also the anniversary of Ellie’s funeral. Somehow that made me think that fate was playing a part.

Over the course of the next few weeks the numbers rocketed, the work involved became more apparent and the packets came in.

By now I had “met” Ellie’s mum, Heather, via FB, and felt extremely guilty that I had caused her all this extra work. All these emails needing answers, labels needed downloading and sending out electronically, all these people with questions that we didn’t, as such have the answers to. I’m sure that the trustees at EFBTT were cursing me and my flash of event-creating inspiration. I’m pretty sure Heather was wondering who on earth this total stranger thought she was taking it upon herself to cause all this upheaval. I know I had pangs of terrible guilt that I hadn’t thought to ask first simply because I didn’t think it would grow so big in such a small space of time.

What it did do though was get people talking, get me talking to Heather, hearing her heartbreaking story and praying that I never had to go through it, get me looking into brain tumours and the effects it has on people. It has also introduced me to some wonderful people. People who carry on despite brain tumours. People who carry one despite loved one’s being taken from them far too early.

What it also did was get people collecting their empty baby wipe packets. We got organised, set up a page after the event ended – https://www.facebook.com/elliesfundbabywipecollection – that has attracted interest far and wide across the country, set up an answers section that we updated as people asked new ones, recruited a core team of wonderful volunteers and we got collecting.

The people collecting set themselves a target over time and we eventually came to the mutual agreement that we were aiming for £10,000 by the first anniversary. We smashed through it three weeks early and actually surpassed £11,000 on the first anniversary! When you think that only 70p of every £100 spent on cancer research goes towards brain tumour research £11,000 is phenomenal. When you think that each single babywipe packet “only” gets 2p that is also phenomenal – over 500,000 packets kept out of landfill.

What this astounding collective spirit also did was it made me discover a reason to be me. I was already a wife and mother but, apart from that, I had no purpose. Brain tumour awareness is now my purpose. I tweet about it, I talk about it, I tweet some more and I get others to tweet and talk about it. I wear silly hats on wear a hat day (I did take it off as a mark of respect when a funeral procession went past last year!) and I wear an EFBTT t-shirt and hoodie even when not doing a fundraiser and I class Heather as a good friend. A very good friend. She, Ellie, and her family are inspirational. If Ellie could raise £25,000 whilst fighting a brain tumour battle then the least I can do is raise awareness!

Together, by wiping out waste and constantly talking about it we will beat brain tumours one day.Image