Thursday, June 27, 2013

Guest post: Social media and cancer care

Connah Broom was sent home from hospital seven years ago with eleven tumours in his body (tumours that had resisted two courses of chemotherapy), it was the doctors’ expectation that he would soon be dead. 
Months previously, they had told Jim and Debbie that he might not reach his birthday in November. Then they were advised that they should have an early Xmas. It was a surprise to them that Connah was still alive four months later when the second chemo had finished. Strangely Connah had survived this second course better than the first even though it was supposed to be ‘more aggressive’. And then he gradually improved so that by the following September, frail though he was, and still riddled with tumours, he was able to start school again. What was going on?
When Connah had first been taken into hospital the previous August it was made very clear that the doctors were not in favour of Jim and Debbie going on the internet. “There’s a lot of misinformation out there. It will only scare you,” they were told. “If we’d listened to that, Connah would be dead by now,“ Jim told me.
I have written their story – entitled The Amazing Cancer Kid – and it will be published in a few months’ time (and yes, I’ll let you know!) – visit me at
But this is not just the incredible story of a boy with terminal cancer (yes, he still has cancer in his body – the cancer hasn’t been cured. But Connah is a robust 11-year-old who plays football and dances in a dance group) It is also a story of connections.
Jim decided to ignore the doctors’ advice and went looking for information on the internet – he was particularly keen to meet other parents who had or were going through the same experience. And he found websites and he made contact. One of these parents converted them to a number of alternative treatments (it’s all in the book!) and within weeks Connah was very quickly and noticeably improving.
There is now an informal network of parents of children with this kind of cancer all linked through the websites. The parents are spread randomly across the country (across the world) but they are able to get together to share ideas.
The doctors and the media have been and continue to be extremely hostile to alternative therapies but many cancer patients are taking the brave steps to go against this wave of disapproval and are finding that these alternative therapies are beneficial and they are sharing their stories – through Facebook and other social media. This is a subterranean movement and it is spreading and the doctors do not like it at all.
Without social media, it is likely that those who believed in such cranky ideas as that vitamins, minerals, herbs and diets could be beneficial in the face of cancer could be safely isolated as cranks. But the networks of sharing that have sprung up over the last 20 years are allowing isolated individuals to share their experience – and this sharing is synergistic. This sharing allowed me to draw from thousands of people the ideas and facts that I have included in my book The Cancer Survivor’s Bible – and I can say to you this: If you are affected by cancer (and we will all be affected by cancer at some time in our lives – our own (50%), other people’s (100%)) then, if you do not read my book, then you are not really trying.
Social media is also allowing me to publish and promote my book to the people who need it, who are out there looking.
I believe that, in 20 years’ time, the practice of medicine will be forced to change itself from the rigid drug-based enterprise it is today to one that is more inclusive of alternative therapies. And this will have been achieved by the power of social media.
(c) Jonathan Chamberlain 2013
The Cancer Survivor’s Bible –

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