We all have different ways of looking at the world we live in. We all have different experiences. We all live together on this rock floating in space, and never before have we all been so connected because of social media. Sometimes this is incredibly positive, I’ve connected with friends I had lost touch with, kept in touch with others who live across the world.
I like everyone else gets to voice my opinion, everyone has them, they are the ideas and perceptions we have to make sense of what’s happening around us . We use them to define ourselves and what we stand for, we use them to form connections and relationships. We use them to express what we are feeling, we use them to cope. I don’t think that the founders of our favourite social media sites could have foretold how much opinions we would have on just about anything you can imagine……. but so far we certainly don’t seem to be running short.
When I was diagnosed with a progression of my cancer after ten and a half years clear it was a very different world to the one I inhabited as a newly diagnosed patient in 2004. Back then the best you could hope for was Ask Jeeves and you might very slowly get to download some pages from sources like CRUK as I was living in the UK at that time. By the time I had my progression in 2015 to a stage 4 melanoma patient social media had exploded. Along with that came the good the bad and the downright ugly.
The good were the connections I made with other patients, and patient groups throughout europe. We have supported each other, educated each other, grieved for one another. The engagement I have had with the research community online, their genuine willingness to help me with information and opportunities to contribute outside of our own support group to highlight the oft misunderstood nature of the brutality of melanoma skin cancer has been greatly appreciated.
The bad is all the nonsense that has sprung up on line, patients being targeted by pseudoscience, article after article of promises of cures luring you down rabbit holes at two am in the morning when you can’t sleep for worry, people elevating themselves to practitioners, with dubious credentials. It’s a minefield and I have written about it before in some detail. https://melanomainme.com/2017/05/29/cure-all-snake-oil/ so I won’t repeat it again here.
And the Ugly which I experienced in the last couple of days on twitter, barraged by tweets from strangers who don’t know me or my story but feel it is ok for them to criticise me personally, my crime I dared to critique the judgement of a patient with huge public sympathy , who had endorsed treatments that are not based on any evidence and suggested that others should try them too.
Social media is an unforgiving beast and best used with caution. I’ve learned, it’s not somewhere you should enter lightly especially when you have an opinion that’s so conflicting with the popular. But the rules dictate we are all entitled to our opinion, I will state mine clearly;
I do not disagree with the personal choices any patient makes in their own personal treatment pathway
I will always disagree if someone, anyone in fact regardless of who they are decides to promote, provide testimonials for patients to use unregulated, unapproved, potentially harmful interventions (they are not medicines) either as an alternative or an adjunctive to their medical treatment.
On wednesday it was brought to my attention that a fashion designer/tv presenter shared a video saying they were trying hyperbaric oxygen (https://www.fda.gov/consumers/consumer-updates/hyperbaric-oxygen-therapy-dont-be-misled) on the recommendation of Vicky Phelan I expressed my disappointment to her in a tweet thread that she would suggest it as a treatment. My words were interpreted incorrectly and I was accused of saying a claim was made about it curing cancer. At no point was this accusation ever made towards Vicky Phelan, and it was made quiet clear what she choose to use is her own business but I reminded her that it was irresponsible to offer medical advice especially given her huge public following. In fact she stated herself in an interview last week the difficulty she faced in managing the requests for help she receives from patients on a daily basis,
“She still has hundreds of unread messages in her inbox. The volume is so overwhelming that she tries to set aside a day a week to get through them. Vicky said she feels “guilty” about not being able to get through them all quickly. She tries to organise her responses by urgency.
“A lot of them are terminally ill people; not given options, not given hope,” Vicky said.
“It’s terrible, isn’t it? When you think about it, that these people feel that the only person who can help them is me. I mean, what does that say about our country?”
Her social media inboxes have turned into makeshift clinics.
We can decry the state of our health service and blame it for the position that patients find themselves in, it is not perfect by any means, but we also have to ask ourselves what has gone so wrong that someone with no medical qualifications is elevated to the position of “the only person who can help them” even if that is Vicky Phelan’s perception of how she is viewed by the public, is this the direction we want to go. We also need to ask are the public being fair putting that level of pressure on a terminally ill cancer patient?
We have a shortage of consultants that is true but I have found the public health system and our oncologists to offer excellent care once in the system, I can’t comment on the private healthcare system as I don’t have private insurance
I also highlighted in my response that Vicky Phelan had in Jan 2019 provided a testimonial for Dr Gabriel Stewart who’s clinic she attends for high dose Vit C infusions as an adjunct therapy. In the testimonial provided Vicky who is photographed with Dr Stewart, clearly states “I would recommend Vitamin C infusions for any cancer patient” she also credits it with “the Vitamin C helped to keep my cancer contained”. There is no evidence that this treatment is beneficial to cancer patients, but there is evidence it can be harmful to some. This systematic review found weak evidence to support claims Vit C improves quality of life and reduces toxicity for chemotherapy, it also found the potential for serious toxicity from IV administered Vit C. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319640/
It’s all harmless you might say but that is not the truth, Vicky Phelan can choose what she likes this is the truth!! Nobody is trying to deny her that right but having a huge media profile whether one asks for it or not comes with a moral responsibility for one’s recommendations. This is not new to anyone who has been in the public eye for even a short period of time, your opinion will be scrutinised, sometimes with good reason, especially where medical recommendations are made, but just look at the pressure she is being placed under, with constant requests for help, and the media which continuously needs feeding, as a stage 4 cancer patient I wouldn’t wish to live that way, would you? so maybe stop step back and think about the frenzy that has been created around a dying woman, is it right?
Society also has to ask what is missing that we turn to unqualified strangers that have been elevated by the media instead of or as a second opinion to our extremely well qualified health professionals, who have trained for years to secure their knowledge and qualifications and who are registered and regulated to offer us cancer care.
I have been lucky in an unlucky situation, I am also an intelligent woman, so that is something else I have in common with Vicky Phelan besides my Stage 4 diagnosis, she is not unique in her suffering, others know the desperation too, there are many of us also capable of research and that research has led us to also have opinions that are worthy of acknowledgement, but in my case at least, mine was referred to as “tiresome” by Vicky, instead of engaging in conversation about our different opinions in a respectful manner the conversation was shut down.
There was some confusion as to why Vicky decided to leave Twitter she says it was a planned exit, and she is fine, in an interview I read today. Her departure was somewhat blamed on an article that was published at the weekend that did not contain any direct reference to her, ultimately only Vicky Phelan can say what motivated her departure from Twitter. What wasn’t fine was the pile on of abuse, that followed although it was quickly mitigated by all the direct messages of support for what I had said and for having the balls to challenge when so many feel restricted to speak up because of the ensuing shitstorm any criticism attracts.
I also wasn’t happy about headlines such as Vicky suffered abuse, at no point in time was any comment I made abusive they were factual, but print and social media care more for a good clickbait headline than facts or balanced articles, not one of them questioned the validity of the claims made about hyperbaric oxygen or Vit C for cancer patients. How can patients be expected to make factual treatment choices when nothing is examined or critiqued with benefit of scientific evidence which is there to protect us from harm? Shame on the press, the radio stations, the trolls, the politicians, the ones who should know better who jumped on board to shred the reputations of those who dared to question the endorsements.
Tagging me another terminal stage 4 patient in a tweet that accuses me and others of making the life you have left a living misery is the most hurtful, unkind and disingenuous thing that has been directed at me in all the time I have been on twitter and although it hurt deeply, I now see the halo is brass not gold, Vicky is just like the rest of us. I will not be deterred from supporting evidence based treatment for all cancer patients in the future as it is our best hope of surviving this disease coupled with the care of our experienced qualified, health care providers. For reasons unfathomable I will continue to be accused of having some hidden agenda I assure you I have none other than to warn patients of the danger of using complementary or alternatives which are not always harmless to health or financial status to patients.
Cancer remains very much a lottery for anyone unlucky enough to be diagnosed, it is incredibly complex to treat, but if we abandon science and throw our faith over to the complementary and alternative practitioners even as an add on intervention should we really believe this is anything more effective than loading on the guilt to fight harder, spend more, run from the truth because the truth is cancer and death frighten all of us more than almost anything we face, but face it we must and in that I wish Vicky Phelan the very best of luck, whichever path she chooses in the future neither of us has an easy road ahead