Is your ringtone chiming a cancer warning?

There has been lots of newsy stuff on the airwaves this week about the latest WHO report which said that mobile phones and mobile phone radiation cause cancer. Or do they? We’re dealing with grey matter here, not black and white!

This is the first longtitudinal study (10 years) and it was conducted across 12 countries by the International Agency for Cancer Research. Along with a report published on October 13 in the Journal of Clinical Oncology (Mobile Phone Use and Risk of Tumors: A Meta-Analysis, Myung et al. J Clin Oncol.2009), there is a possible suggestion that there is an 18% increased risk of brain tumours in heavy mobile phone users and that they tend to occur on the side of the head that the mobile is used most.

OK. We know that the incidence of brain cancer is increasing by a rate of 2% a year. And it isn’t because we have better diagnostic weaponry, so it has to be something in the environment. But this research has holes. For a start the research is not complete and whilst ultimately the findings could prove true it is too early to say. Secondly this research has not been peer reviewed. This is the stage at which other research scientists read the research and look for flaws so that a proper debate can be had. This leads to a more accurate outcome.

So my feelings? Are mobiles safe? We need to watch this one. But also maybe the DECT phone sitting on your desk. Oh, and the wireless router. And anything else we can think of that may be interfering with our brains. But I don’t think that, even if this research is ultimately conclusive that we will change our behaviour and stop using our mobiles. We know what alcohol and donuts do to us but we still drink and eat them.

Proton beam therapy

Lots in the news recently about proton beam therapy – and in brainstrust’s news too. What is this therapy that sounds like something out of Star Wars? Well – it wouldn’t be too far from the truth.

Proton beam therapy (aka as proton beam radiosurgery) is one of several radiation therapies available – but not necessarily in the UK (for more information about the types of therapies visit here). There are two proton beam therapy units in the UK, but these currently only deal with eye cancer. Funding has been made available for a full blown proton beam therapy unit and NHS Trusts have been invited to apply for this funding, so I think that having a centre in the UK is a way off yet. It is different because it uses a particular feature of protons to minimize the radiation given to normal tissue around the tumour and is therefore better for younger, developing brains. For more info about PBT in Boston click here. And to read more about proton beam therapy in general then this is a good site proton-therapy.org

So people needing this particular type of treatment have to go abroad. At great expense and at great emotional cost. Many of you will know about Alex Jones and his wonderful campaign.

Alex was supported by brainstrust and recently returned from Boston following his treatment, where he continues to make good progress. You can read about Alex here.

There has also been Melissa Huggins who has been through this and has come out the other side (http://www.melissasfightingfund.co.uk/). Melissa has had the same type of brain tumour, an ependymoma, as 3 year old Fletcher. Fletch is only half way through his treatment and his parents are finding it hard being away from home. It does seem a cruel twist of fate that at a time when you need to have friends and family around you, you have to be far away from them. We ran Meg’s blog when we were in Boston and the comments made us feel less isolated.

Fletcher’s parents have established Friends of Fletcher www.friendsoffletcher.com where you can read more about this wonderful little lad and his family. Please stay in touch with the family. They need to know they are not alone on their journey.

Now here’s a thing! When we founded brainstrust I had no idea of the wild and wonderful things it would get me into. The latest was an invitation by Channel 4 to spend an evening at The Wellcome Trust in London to watch Paul Grundy, one of our Patrons, perform an awake craniotomy live on TV. It was actually OK – the only bit I couldn’t watch was when the skull was lifted away from the dura. It was highly informative and the fact that the audience (live and TV) could interact with the process through twitter, facebook, email and phone, made it accessible for all. It was sensitively handled, the patient and his family had agreed to the filming and if things had gone pearshaped then filming would have stopped.

So I was surprised at the backlash. Criticisms ran rife about reality TV and how inappropriate this was. Surely the more you know about a situation the better prepared you are to deal with it? I know that when Meg and I were diagnosed with cancer we wanted to know what our options were so that we could make our own choices. And I am glad we did. Meg would be on her honeymoon now if we hadn’t. I believe in looking the tiger in the eye; the more information we have the better.  You don’t have to watch this stuff. There is an off button. It’s about choice. I have a right to watch this; you have a right not to. But it isn’t right to deny someone the option of being informed.

52% of charities say the credit crunch has affected the work they do, according to a report by the Charity Commission. Almost two-thirds of charities with an annual income of £1 million-plus also said they were concerned the downturn would have a significant impact on their work. Just over one in 10 have upped their fundraising efforts and 6% have taken to drawing on their financial reserves. Charities face that double whammy of a drop in income as well as an increased demand for services. Source: Sky News 17-03-2009

And yet . . .

Comic Relief defies the credit crunch. Comic Relief defied the recession by raising a record £57 million for charity. The BBC1 extravaganza broke the previous record of £40.5 million, set in 2007. Source: Mail on Sunday 15-03-2009

So who is right? From our perspective we just need to keep being smart – smarter about using our database, smarter and more imaginative about our fundraising efforts and smarter in our approach to potential supporters. Being small let’s us do this, so there’s a lot to be said for being small and smart.

But brainstrust doesn’t always feel small!

Ok- this is about as far as I can go now. In the last month I have moodled, blogged, tweeted, twittered and wordled. And the best experience? Wordles. If you haven’t come across these tricksy little wordy things then you are missing out.

See this boring list:

brainstrust hope health support care spirit steering journey exploration here now help collaboration honesty fortitude courage brain cancer

Now look at it:

You can do this too! Just look at wordle.net

Happy wordling!
Helen

Ok – I am obviously getting wise to blogging because the Hampshire Chronicle have also asked me to blog. But don’t read it because it will probably say exactly the same thing as this one. There are only so many hours in the day! But I am well in with journalists now, particularly those of the healthcare kind. Take this week for example. I was incensed to read what the Independent health correspondent had written. He was having an argument with his wife. The argument arose because the NHS had been unable to provide critical information to a brain tumour patient, which would have save her having to raise £130,000 to go to the USA for proton therapy treatment.

Jeremy wrote the following:

What outraged my wife was something different – that the doctors had not told Huggins and her family of the proton treatment (regardless of its availability on the NHS). I had quoted, approvingly, Huggins’s boyfriend’s comment that “to be fair to the doctors [being ignorant of the NHS scheme], they could not recommend something that the NHS could not provide”. Her response? “Rubbish.”

Did she have a point? A doctor’s duty is always to do the best for each patient. But what is “best”? How can it help a patient to be told that there is a treatment for their condition but no way of getting it?

My wife’s argument was that withholding information denies patients choice. We cannot know what resources – in the widest sense – they may be able to draw on (Huggins’s family and friends have raised £132,000 towards her treatment costs in the US in a couple of months), and it is not for doctors to judge how they will use the information.

I disagree. Deciding what, how much and when to disclose to patients with very serious illnesses is one of the hardest tasks we demand of doctors. Every case is different and requires an acute sensitivity to the patient’s state of mind. The most difficult part is judging how much, or how little, they want to know.

So who is right?

Well, not Jeremy! And he now knows this. If you have the stamina to read on, this is what I replied:

I hate to tell you that on this occasion your wife is right. I am the mother of a beautiful 23 year old daughter who has had brain cancer – of the malignant sort – and she has survived it. And do you know why? Because I spent a year finding a solution which involved a Jewish Rabbi in Israel and two neurosurgeons in the USA. If I had taken the doctors’ opinions in the UK as gospel, Meg, my daughter, would be dead now. As it is, she has just completed her MA and is engaged to be married in May. But it is worse than that; not only did the first neurosurgeon we met in the UK tell us there was nothing they could do for Meg, he also told us not to go to America as ‘they are just after your money.’ Poor man! He was damned – if he did know about treatment options abroad and didn’t tell us, he should have done, and if he didn’t know, then as Professor of Neurosurgery, I would have expected him to know. But to not tell us is unforgiveable. It is up to the patient to decide their treatment options and if they need extra resources then there are ways and means of acquiring them. We did. And the cost of Meg’s surgery in Boston? A mere £35,000. Not much for a life, is it? And it wouldn’t have cost the surgeon anything to spend five minutes telling us about our options. The patient needs to know and if they chose not to look the tiger in the eye then so be it, but at least give them the option.

So I raise a glass to your wife – you should too!!

And Jeremy had the decency to reply (an edited version here):

“What a wonderful msg! I am copying it straight to my wife, who will be gloating for days (not a pleasant sight). Yours  sounds a remarkable story and i am delighted it has had such a positive outcome. I was always on weak ground discussing 20-something cancer sufferers.”

So is this another journalist won over to our cause? Possibly not, but it is a starting point. So – who is right? Over to you….

With all the hype about charities and recessions, we think it’s time to put the record straight. 2008 was a brilliant year for brainstrust, and to achieve our goals, the campaigning and fundraising must continue.

The end of 2008 and the beginning of 2009 has seen some magnificent efforts in a range of contexts from our supporters.

In total they’ve raised over £9,000!

• The White Horse at Ampfield has collected £1,500 for brainstrust and John and Gaye want to keep going for us in 2009. We are hoping to hold some events at this wonderful pub this year. Please pop by for a wonderful meal and pop some pennies in their pot! Thank you to John and Gaye for their ongoing support!

• Matthew (9) and James Ellacot (14) are very special brothers. They chose to freeze for brainstrust outside their local Sainsbury’s, and tried to keep warm by playing a cornet (Matthew) and a horn (James). This event raised a huge £1, 311.40!

• Becca Shackelford continues her fundraising by rallying the troops at her school, The Grammar School at Leeds, where in the space of 24hrs the students raised in excess of £600. Obviously a force with which to be reckoned!

• Another group of people who enjoy the cold for brainstrust are commmitted golfers. The March Hare Golf Society held a Charity Golf Day on 29 December, had a good round of cold golf, and raised £150 at the same time. Thank you!

• Stroud School has adopted brainstrust this year and its fundraising has got off to an excellent start, with over £2,000 raised already. I had the privilege of being invited to the School’s Charity Concert in December, which was just delightful and an excellent way to catch some Christmas spirit.

• And a big thank you to all our supporters who sent our Christmas Cards again this year. The two days we had at Winchester Cathedral Christmas Market raised £800 in sales; this is just the tip of the iceberg (yes, it was freezing there, too). The income isn’t finalised yet but it looks like we will break all records. Thank you to those who endured the cold with us!

• Another group who enjoy the cold must be the Brahm bikers. They powered through mud, rain and brown ale to raise over £1,000 for brainstrust.  Have a look to see what they did »

• Two other special boys are the Vallor brothers, Harrison (8) and Connor (9). They lost their grandmother to brain cancer and so were determined to raise funds for brainstrust. They both ran in the Great South Run – Harrison came 5th out of 800, Connor came in the top 30 for his age, and to top this they raised £262. Well done and thank you, boys!

• And whilst we are on the sporty theme, we have several people to thank for their endeavours – Matthew Haynes, Danny McGee and Paul Sutherland are just three, for running in Swindon and cycling in the Scottish Highlands. Thomas and Chris Carter rode in the Velo Vosges Challenge for brainstrust, a cause close to their hearts after their mother was diagnosed with a GBM 4.

• We have also gratefully received donations from the Olivers Battery Women’s Group, Michelmersh and Timsbury Horticultural Society, The Portsmouth and Southampton Mini Owners Club, and the Lancashire Constabulary Sports and Social Club,  which just shows geographical awareness of the brainstrust cause.

• Finally a big thank you to Kate, Jackie and Nerina for organising and hosting a Forever Living get together, and Amanda for hosting a Miglio party on behalf of brainstrust – aloe vera and jewellery; a great Christmas present mix!

Roll on 2009! We think it’s going to be a brilliant year and can’t wait to see what challenges our supporters think of next!

It seems appropriate to be lanching the brainstrust blog on 1st January 2009. What exactly is a blog? A personal diary? A soapbox? A breaking news outlet? Memos? A shared space? Collective intelligence? A daily pulpit? I would hope that the brainstrust blog will become all of these things. But I know it won’t be daily!

It is important though that you, the brainstrust blog readers, join in the fun, the seriousness, the thinking, the imagination, the ideas, the news and views that will be appearing in the brainstrust blog.  We have no resolutions, just sheer determination that the world will become a better, more hopeful place for brain tumour sufferers and their families.

A strong, deeply rooted desire is the starting point of all achievement, and whilst brainstrust has achieved a huge amount, there is still a long way to go on our journey. I want a future where I don’t meet patients who have learned too little, too late, about their condition so that instead of making informed decisions about their treatment, they are planning how to spend the last few precious months.

I want a future where I don’t meet another parent who hasn’t been told what the options are for their child who has a brain tumour, so that they feel isolated, frightened and disempowered. brainstrust is fixing this. It is being done and with you onboard, we are the ones to do it.

So – join in the blog, join the fun and let’s get the job done.