A facebook group set up for conversations about how we manage cancer is inviting new members.
What began as a frustration with the shackled NHS has turned into a practical discussion about how the UK does, and might, manage cancer.
A very private Public figure, Dr Carol Coombes OBE recently came out about her own cancer, diagnosed in February 2017, to try to make changes to the current system in the UK that effectively gags NHS staff from discussing anything other than conventional radio and chemotherapy
Diagnosed in February 2017 with a ‘rare and aggressive’ tonsillar cancer, Carol immediately embarked on a series of lifestyle changes, aiming to rebuild her immune system. Her hope was that she could do this, and with regular monitoring and assessment from the NHS, be able to check on progress.
Carol was stunned to learn that the NHS, the main public healthcare provider in the UK, cannot discuss any treatments outside oncology, due to The Cancer act 1939.
This means that no information is being kept officially in the UK relating to people using alternative and more traditional methods, as Carol is doing.
Naturally, as far as the NHS practice is concerned, no treatment can be given without having gone through full clinical trials.
No clinical trials can be considered without enough compelling evidence to force one. And no evidence is being collected.
Each week stories appear about using other methods, with no evidence or rigour to the claims, meaning they can’t be used to help future treatments.
A bill pertaining to use of Medical Marijuana is being tabled in the House of Commons by the Labour Party In February 2018, making it even more useful to have basic evidence to start.
She’s asking for a change that allows methods proving to work in other countries to be at least discussed and assessed in the UK.
The main changes Carol made include eating mainly a plant based diet, constantly working to get her kidneys filtering, and lymph clearing properly.
As part of her research, she found that HPV related cancers are expected to make up a high percentage of cancers in the next twenty years, and that the treatment has lifelong debilitating impacts, with (as with every treatment so far) no guarantees.
The consultant at the hospital also confirmed to her daughters that they’re more vulnerable to the illness, falling outside of the group vaccinated against HPV Carol feels she was never clued in enough about how the human body works, her faulty completely, she says. This year of healthy living is the first year in the last five that she’s not had an operation, for a recurring problem.
In fact, despite being told in March that she might have less than 6 months to live, she’s still very much here, and taking no pain relief apart from cannabis oil.
Carol’s been asking for the NHS to look into these treatments, which are showing success across the world.
Carol stresses that she’s not just talking about Cannabis Oil here, tho as that often receives most interest, it’s been a heading used to direct people to the page set up to discuss this.
The biggest reason for her of a need to look at the way we manage this, is the figures that show 1 in 2 of us is expected to get cancer now.
She said she doesn’t know anything about curing cancer. She’s a normal Nan and Mom. But she does know that She, and many others, want to do all they can to reduce the risks to others.
‘If it’s one in two now, what will it be when my grandbabies are grown? We have to look at this differently.’
Carol raises a number of questions that are being raised regularly, without anyone coming forward with a response. She says it’s precisely this lack of a response to questions that appear to be straightforward that heightens the fear and suspicions, at a time when we most need to trust our healthcare providers.
These questions include:
1. Why can’t the test results, experience and evidence of people now be looked at, to see if there are emerging patterns or themes?
2. Healthy living to manage disease has a clear requirement of no processed foods, sugar, dairy etc yet everything given to cancer patients as part of the treatment has a frighteningly high percentage of sugar. If nutritionists around the world say no sugar for cancer, why do we do the opposite?
She’s spoken with several leading researchers who said, quite simply, they’re prohibited from discussing anything outside of conventional treatment due to section 4 of The Cancer Act 1939. Others have said the biggest challenge is with knowing how to apply new methods, rather than of understanding them.
Carol’s established a facebook group Banned Aid:Weed the World, to pull together people with an interest in learning more in a v simple way, I’d like to bring together people who are interested in finding out more, and ideally, contributing to the conversations. That’s the way the world changes, in my experience..creating a space for interested, relevant and able parties to come together.’
Cannabis oil , although it’s only one of the herbs being used in her thrust towards wellness, is the most contentious part, on a number of levels. Because the full extract oil is currently illegal in the UK, there’s no way of comparing experiences. Much of Carols own oil is supplied by one of her closest friends in Spain.
While there are miracle stories daily, no one can offer anything other than ever changing anecdotes about this in the UK because no evidence is captured. It’s overwhelming to try to weave a path through the information, and that’s without the added pressure of a cancer diagnosis .
The biggest challenge for Carol (and by that She means the only one so far she can’t really work around without a change in the Law) is why there’s no pathway that allows a patients values and beliefs..Patient Choice..to be at the centre of care. She’s told consistently it’s because there’s no evidence, yet Carol is willing to be a guinea pig for assessment and monitoring, and has found others, through this and other groups, who might be willing to do the same.
Carol feels now is the perfect storm.
Cannabis Oil is expected to be made legal in the UK in a few years time at most, as it is in other countries.
She says if information is being gathered now, ready for that time, it gives an obvious advantage.
‘Some of the great brains behind the work and research leading us to this point (including Mechoulam, Devane, Hanus, Melamede, Gordon, Russo, Guzman, Sanchez et al) are around at the moment to stretch the understanding of what we find. How amazing would it be for our amazing NHS staff to learn lessons while we can still ask The Pathfinders? ‘
She’s pushing for open, honest and useful conversations about treatments that people are using, whatever they are, now. If not, she says, we’re not just wasting, we’re consciously refusing to even acknowledge free and relevant data.
She stresses that, obviously, no one would expect clinical trials for everything.
This, she says, is a natural herb that’s showing clear benefits for lots of health issues, WITH NO LASTING negative impact to the people taking it, in countries that are much further forward in their knowledge No-one at all would ask our exhausted NHS to take on more, if there weren’t clear benefits for everyone, in every way, of exploring this. There are proven and accepted benefits elsewhere.
To not even be able to start gathering and using the intelligence from people already taking it, as part and parcel of the data already collected, feels like a massively wasted opportunity.
The social, economic and environmental boosts to the country, both in terms of benefit found, and damage limited, could help the country into sustainable recovery. We could move out of recession, as has happened elsewhere in the world, if we look at this properly.’
She goes as far as to say that our government, on our behalf, should invest in this now, with a publicly owned Cannabis industry coming out of it, rather than the private companies that are kicking at the UKs door.
That, and working with schools to understand healthy eating, and wellness, could make a real impact on how we manage cancer, and she’s speaking with senior leaders in her hometown of Birmingham to model it as a Well City
Her frustration is evident, but delivered calmly. She’s been told consistently that the NHS can’t even consider discussing the impact of more traditional healing methods, including Cannabis Oil on cancer as there’s no evidence. And no evidence can be gathered without a clinal trial meeting a recognised Gold Standard. The Clinical trial can’t even be considered without enough incentive to lead us there.
She asks ‘What more incentive is needed than knowing 1 in 2 will be affected? These are our kids and grandbabies we’re talking about. We must be able to do better. Current treatment has such a monumental impact not only on the person, but their family, their work..everything. Cancer , and the current options, terrorise everyone’s lives. We have a moral obligation to test what we can before the next generations have to’
She wants evidence, if that’s what’s needed to make a difference. And she wants to be one of the people who help to provide it.
She’s involved in a number of useful conversations, politically and legally, to see if the Act itself has to be reformed; is involved in a series of conversations she calls ‘Come Die With Me’, about managing the End of Life, and is committed to pushing for change at every opportunity.
‘There are so many variables, inc types of cancer, and different types of oil, particularly while people are scrabbling around to get their hands on whatever There are so many variables, inc types of cancer, and different types of oil, particularly while people are scrabbling around to get their hands on whatever they can. Even testing this, with so many variables, won’t lead to conclusions. The one consistent is the way the human body works. If we can, whilst not taking our eye off cancer itself, look at how the body gets on, particularly during critically ill health, with a healthy lifestyle, and oil, it’s a start. It’s not perfect, but I imagine if anyone had hit perfect by now, we wouldn’t be in this position’
Carol’s aim is to find c 1000 people using natural methods, with a high number including oil, as a reasonable number to begin. She needs just a few more people experienced and able in medical research to look for patterns and emerging themes. That’s all.
She summarises ‘we need to at least look at this. A recent survey said that 20% of people shower or bathe every day. That really struck me. We’ve now got more chance of sitting by someone with cancer, than by someone who’s showered that day. Cancer is now, horribly, THAT normal. We need to look at everything that’s showing results, as current treatment is so impacting. To quote Hillel the Elder..’if not us, who, if not now, when’. What an amazing, privileged opportunity to make a difference during what could for some of us, be the last stages of our lives?’
Join the conversation here https://www.facebook.com/groups/1371468459639799/ or via twitter @crackingleaders #bannedaid