My cancer drug costs just £2 a day – so why did I have to get it from Guatemala?
One very determined and intelligent woman finally beat the NHS bureaucracy that was set to kill her
Five thousand miles from home, I am sitting alone in a hotel room in Guatemala City. My mobile phone doesn’t work and I’m not strong enough to stand up for long. Getting here has cost me several thousand pounds. So why am I here?
Pursuing a breast cancer treatment that has been newly identified by medical researchers, which uses conventional drugs – and that I, at 51, hope will give me around a 3.5 per cent better chance of survival.
But only if I start it immediately after chemotherapy. The only problem is, right now I can’t get these new drugs in the UK. I can get them in Guatemala, though…
The trouble started in March last year. Suddenly, spectacularly, my entire nipple turned in on itself, as if someone were vacuuming from inside me.
‘We’ve got a big problem here,’ announced the doctor at the Royal Marsden Hospital in Sutton, Surrey. I had a eight-and-a-half centimetre tumour in my right breast.
Ordinary checks hadn’t spotted it. It was a sneaky cancer called lobular, which doesn’t form in lumps, but gradually thickens the breast tissue. They removed my right breast and all 28 lymph nodes from my underarm – 24 of them had been invaded by the cancer, which meant the cancer could have spread via the lymph system and be anywhere in my body, looking for new places to grow.
I was told that when there are secondary cancers, treatment becomes ‘palliative only’ and although I could live for years, I would eventually die from the cancer.
‘If the scan says the cancer is all over me, I don’t want to waste time in hospital,’ I told the doctor. But to everyone’s surprise, the scans didn’t detect any secondary tumours.
By autumn, I’d had chemotherapy and radiotherapy, and was taking Letrozole, which lowers your oestrogen so the cancer can’t ‘feed’ on it.
But I wanted to do more to survive. So I asked my doctors to remove my ovaries – a top target for secondary tumours – and they did. I believe all women with oestrogen-linked breast cancer should be offered this preventative operation. But in the NHS, it can be: ‘Don’t ask, don’t get.’
I did everything I could to help myself. I always used aluminium-free anti-perspirant, as aluminium has been linked to some breast cancer. To eliminate oestrogen, I gave up dairy food, meat and soya. I also took vitamins, manuka honey and broccoli and a wheatgrass drink. Seeking new treatments, I read everything I could on the subject.
Last autumn, I found an article in the Mail about an osteoporosis drug called Zometa, or zoledronic acid. This is one of a family of drugs called bisphosphonates, which loads of women take to protect themselves against osteoporosis – which seems to have the effect of protecting against breast cancer too.
When cells from a breast tumour spread, they often go to the bone, where they stimulate bonedestroying cells. This, in turn, produces growth factors, which then boost the cancer.
The theory is that a double dose (4mg) of zoledronic acid helps to keep away secondary tumours by killing bone-destroying cells. This may be particularly relevant for post-menopausal women, as taking oestrogen-inhibiting drugs weakens bones.
Zoledronic acid can burn the stomach, so must be given through an intravenous line, like chemotherapy.
On the internet, I found news of a large American trial called Zo-Fast, published by the American Society of Clinical Oncology two years ago. When Zometa was given to them as soon as possible, an extra three women in 100 survived ‘disease-free’.
That figure drops to one in 100 if it is only given to women whose bones are deteriorating – which is the current British guideline. Zometa also strengthened bones by up to six per cent, ounteracting Letrozole’s tendency to weaken bone density up to five per cent a year.
I asked my Royal Marsden doctors for Zometa. They were sympathetic, tested my bones and said, no, sorry, they weren’t weak enough to qualify under NICE guidelines. Nothing personal. They give it to women whose bones are weakened. They give it to women who have already developed secondary tumours. They give it to pre- menopausal women.
But, they explained, it hasn’t passed its regulatory tests yet for post-menopausal women like me. Typical, I thought – women like me could benefit the most!
This wasn’t because NICE were pennypinching – the cost would be around £600 extra a year for a three-year course, a paltry amount. I just couldn’t get the drug until it had passed all the regulatory hurdles.
By spring, I felt like a poor kid with my nose pressed to a sweetshop window. Time, I decided, to ask the top banana at the Royal Marsden, my consultant Professor Stephen Johnson. He suggested that Professor Robert Coleman, Yorkshire Cancer Research Professor at Weston Park Hospital in Sheffield, might help. Robert said: ‘I believe the benefits in women in your situation outweigh any potential risks.’
With no ovaries and taking Letrozole I also risked osteoporosis. Doses of zoledronic acid would protect against this. Then, just as an aside, he mentioned that Zoledronic acid was ‘already approved in Guatemala!’.
Within a day I had tracked down Cecile Billiet, a motherly Belgian who runs the non-profit-making Health Tourism Commission in Guatemala and her own health tourism business.
I emailed my notes and test results. Overnight, she found me Dr William Campbell, an oncologist there with professional memberships coming out of his ears, who said he’d taken part in the American Zo-Fast test – and yes, he would give me Zometa.
That week, if I could come. The treatment itself would cost $700, and Cecile charged a reasonable fee for arranging everything. One seat was left on the next day’s plane. It had my name on it.
Cecile whisked me from the airport to a comfortable hotel, and next morning, in a clean hospital, Dr Campbell’s nurse hooked up the intravenous line and administered the Zometa, the first of the six monthly treatments I need for the next three years.
Before I left, Dr Campbell gave me his number and told me to call any time. How different from the doctors at home. Waved off by smiling nurses, I staggered back to my hotel.
My tummy was sore, despite glugging down gallons of water. Cecile ordered plates of papaya to soothe it. For two or three days afterwards I felt pretty nauseous and sleepy.
But by the time I flew home several days later I was feeling better, although Cecile advised me to ask for a wheelchair at the airport – a top tip, as I could not have carried my bags.
When I got home, Professor Coleman emailed: ‘Amazing!’. Another, more ominous, message from the Royal Marsden asked me to see them urgently.
This is it, I thought. They are telling me to get lost because I went abroad. I was unrepentant. I felt much more positive after having Zometa – and the twinges of pain in my bones had stopped.
But when I saw Professor Steve, he was smiling: my blood tests showed my vitamin D and zinc levels were dropping, and he was concerned about my bones. He would use his clinical judgment and give me intravenous bisphosphonates. I could have my follow-up treatments In the UK. For one moment, I didn’t know whether to laugh, cry or slap him.
Then I thanked him, from the heart. No, from the bosom. The one I’ve still got left.
The diseased British welfare system
‘£500-a-week? I can earn more on benefits!’, unemployed driver tells stunned haulage boss
A haulage boss was left stunned after an unemployed driver rejected the offer of a job paying more than £500 a week so he could remain on benefits.
Graham Poole, the managing director of a 23-wagon fleet in Rochdale, offered the job to the man who had been out of work for 18 months only to be told told it was not enough to have him come off government handouts. The man turned the job down claiming he could get more money on benefits by ‘sitting around at home’.
Furious Mr Poole said: ‘What is wrong with this country. I was offering him more than £500 a week before tax. ‘It is no wonder that so many people are out of work when others are allowed to blatantly refuse to work because their benefits are higher
‘When he came along for the interview, he seemed like the right person for the job, and that is why he was offered it. ‘But what annoyed me most was the way in which he rejected it by saying he could get more on benefits by sitting at home.’
Mr Poole’s job offer to the man as a haulage driver included a basic weekly amount of £427.50 weekly plus up to £81 in tax free expenses. He said: ‘I am sure people in Rochdale would love to know that a person is still able to go along to the local job centre, look for a job, find a job, then go for an interview for the job with all the relevant qualifications, then turn down the position saying “it would not be financially viable”.
‘This is not the first time this has happened. ‘I believe that someone who refuses a job should have their benefits stopped automatically and they should be made to take whatever jobs are available irrespective of what the wages are.’
A spokesman for the Federation of Small Businesses said: ‘With unemployment so high and full-time jobs so hard to come by, there is clearly too much dependency on the benefits system if people can turn down well paid, full-time work. ‘The FSB welcomes coalition government proposals to extend the time that benefits can be cut for people who turn down a full-time position from six months to three years. ‘We believe that through this, people will be able to get back into the workplace and that it will get Britain working again.’
Emma Boon, campaign manager at the TaxPayers’ Alliance, said: ‘This case shows how desperately the welfare system in this country needs to be reformed as there are currently people trapped on benefits. ‘Taxpayers will be angry that they are going out to work, while others are getting just as much money without taking a job.
‘The government needs to make it pay for people to go out and work. ‘People should be better off if they have a job than if they stay at home on benefits.
‘In addition it is simply unsustainable to have a situation where those on jobseekers’ allowance are allowed to turn down suitable employment.’
Angry parents accuse British school of ‘dumbing down’ English by showing The Simpsons in class
A father has started a petition against ‘dumbing down’ after his daughter’s school ditched literary classics in favour of The Simpsons. Joseph Reynolds was horrified when his 13-year-old daughter spent six weeks studying the popular US cartoon in English lessons. Homework assignments included watching episodes of the TV series.
His petition calling for Shakespeare to replace The Simpsons has now gained more than 300 signatures.
But the school, Kingsmead Community School in Somerset, has defended its curriculum, claiming the programme helps students ‘to become critical readers and analysts of complex media texts’. It insisted it was merely following the National Curriculum, which requires that students study ‘moving image’ texts. And it said ‘many other schools’ used The Simpsons to teach English.
But Mr Reynolds, 44, a marine engineer from Wiveliscombe near Taunton, branded the programme the ‘Turkey Twizzler’ of the curriculum and called on Education Secretary Michael Gove to act to remove it.
‘When I asked my daughter what she had done today in her English class, and she said The Simpsons, I thought it was a hook to get the kids interested in something more intellectual,’ he said. ‘But six weeks later she was still doing The Simpsons.
‘I’m not some moral crusader against The Simpsons. I find it witty and clever and watch it at home. But it’s a TV sitcom and it doesn’t belong in the classroom. ‘I do think we should raise the level a little for our children. Children should be studying text of the highest quality and I don’t believe this fits the bill.’
Mr Reynolds wife, Denise, 39, said: ‘Someone said to my husband that Homer was the modern day Hamlet but how can these kids make a connection like that if they are not learning about Shakespeare?’
Mr Reynolds wrote to the school to raise his concerns but both the head and governors defended the use of the programme.
In a letter, the school claimed that analysing the opening sequences of the Simpsons was similar to analysing the opening of Dickens’ Great Expectations.
Mr Reynolds added: ‘Most of the parents I have met have been unaware that their children are studying The Simpsons and they were shocked when I told them. ‘All I can do is try to change it. The Simpsons has dominated English lessons for six weeks. My daughter will never get that time back. I don’t think it’s good enough. It’s dumbing down.’
There are suggestions The Teletubbies was used in lessons for 11-year-olds, while Mr Reynolds’ daughter will next year study the Hollywood romantic comedy 10 Things I Hate About You. It is a modern-day adaptation of Shakespeare’s The Taming Of The Shrew.
Mr Reynolds said he no longer ‘trusted’ Ofsted inspections after the school was rated ‘outstanding’.
But headmaster Geoff Tinker said: ‘The National Curriculum requires that students study a range of texts including moving image texts. ‘We, along with many other schools, use The Simpsons to develop analytical essay writing and thinking.
‘The Simpsons is excellent for analysing the use of satire, parody, irony and humour – enabling students to become critical readers and analysts of complex media texts.’
He said students also studied Shakespeare, classics such as Jane Eyre and Great Expectations and poets including Wilfred Owen and Rupert Brooke.
‘Mr Reynolds has his own view about the merits of The Simpsons, which we do not hold,’ he said. ‘Our GCSE results in English Language and English Literature stand up to scrutiny and do not support Mr Reynolds assertions about “dumbing down”.’
Britain Shelves Green Investment Plan
Plans to use money from the sale of government assets to provide the riskiest of equity investment in green energy projects such as offshore wind and carbon capture have been shelved by the government.
The move comes amid signs of tension between Vince Cable at the business department and George Osborne at the Treasury over the scale of the coalition government’s planned green investment bank and its precise role.
In Labour’s last Budget, Alistair Darling, then chancellor, announced cash from the sale of the Channel tunnel rail link and other disposals of government assets planned over the next 18 months would provide early-stage equity investment in green energy projects.
Some £1bn ($1.5bn) of sales proceeds were to be used as “the riskiest of risk capital” to help attract a matching £1bn from the private sector by removing some of the biggest risks from green energy projects. The aim was to kick-start the further tens of billions of pounds of investment needed from the private sector.
But, according to Andy Rose, head of the Treasury’s infrastructure finance unit, that is now “the policy of a previous government”.
He told an infrastructure conference run by City and Financial: “We are not pursuing it” and it is “not on the agenda of the current government”.
Other Treasury officials indicated the idea might be revived when the government settles on plans for a green investment bank later in the year, although it seemed more likely the proceeds from asset sales – which the government still plans to follow through – would be used to pay down debt.
Setting a good example in today’s coddled world
“Emma” is a 70-year old British widow who originally hails from Bath. Perhaps it’s true what they say about Bath’s mineral-rich waters, because Emma looks absolutely spectacular for her age, and her energy level would make a 40-year old envious.
For the last several decades, though, Emma has been living an expat lifestyle all over the world– in Dubai, Scotland, Switzerland, and now finally in Malta.
Here’s what’s most intriguing about her, though… she’s always worked. Even as a 70-year old widow in Malta, she still has a job. In her own words Emma says, “I’m a war baby. My generation doesn’t think that anyone owes us anything, doesn’t think that it’s other people’s responsibility to take care of us.”
I recognize that a lot of people are scared to expatriate simply out of financial anxiety; they don’t know how they could find a job, make money, and pay the bills. Even with three children to take care of, though, Emma never let that uncertainty stop her.
You see, Emma always had supreme confidence in her own abilities to add value everywhere she went; she’s hard working, intelligent, and resourceful, and she knew that she would always be able to put those qualities to work for someone everywhere she went.
She was right. Even in male-dominant cultures like Dubai in the 1970s and 1980s, Emma was able to find work and thrive. Moreover, she religiously saved her wages, believing in the old adage “waste not, want not.”
For this reason, she says, she has been able to accumulate substantial retirement savings, even though she never held an extremely high paying job.
She also made the decision to denominate her savings in the Swiss franc many years ago; she set up a bank account in Switzerland when she was living there in the 1970s, and this is still the bank that she uses today. Even back then, she felt that the franc would be a better store of value than the dollar or pound.
Today, she enjoys a bountiful life on Malta’s pristine coast. Between the beautiful weather, the friendly people, the reasonable cost of living, and the work opportunities, she’s extremely happy there and is able to live well on her retirement savings and part time wage income.
Overall, I think Emma has a really interesting story of someone who has planted multiple flags (banking, employment, residence) and sought out unique opportunities around the world.
Mostly, though, I really like her strong, positive attitude. Many people in her position would probably wilt at the challenges and adversity of being a widowed mother of three. Emma has thrived. And the main reason is because she had the self-confidence to overcome excuses and limitations, and the courage to not be afraid of living free.
Facebook defends Raoul Moat fan page
“Social networking site Facebook has refused to take down a memorial page for British killer Raoul Moat. More than 35,000 people have joined a group called “RIP Raoul Moat You Legend”, leaving sympathy messages for the killer. Many of the messages are anti-police.
Prime Minister David Cameron earlier expressed his bewilderment that Moat, 37, should attract any sympathy. He described him as a “callous murderer”.
Suggesting that any sympathy should be reserved for the victims, the Prime Minister told MPs: “It is absolutely clear that Raoul Moat was a callous murderer, full stop, end of story. I cannot understand any wave, however small, of public sympathy for this man. There should be sympathy for his victims and the havoc he wreaked in that community. There should be no sympathy for him.”
Moat shot and seriously wounded his ex-partner and killed her boyfriend. He then shot a traffic police officer, a 42-year-old father of two, in the face, blinding him.
Facebook management rebuffed Downing Street, however, suggesting users who had posted supportive messages of the murderer were entitled to their views.
The author of the site has now taken it down but Facebook are to be commended for sticking to their guns.
Anybody who regularly reads POLITICAL CORRECTNESS WATCH or Strange Justice will know what lazy SOBs the present-day British police often are so an opportunity to vent about them would be understandably popular