When I cured myself of irreversible, pre-cancerous proliferative verrucous leukoplakia (PVL) my specialist surgeon was, I think it’s fair to say, gobsmacked. It’s something he had never seen before, and believed to be impossible. The five nasty white patches on my tongue melted away leaving a perfect pink patina, in five months flat.
During the previous five years I had been the unhappy owner of an increasingly unhappy tongue. After several painful biopsies, the diagnosis of PVL was a bit of a shock. It’s a condition normally associated with Indian, male smokers over 50 and, as I was then a 40 year old, British non-smoker, I sought a second opinion. The specialist ENT oncologist I consulted at Kings Hospital, London, spoke about field change, irreversible damage and inevitable progress to malignancy in ±5 years. So when I stuck my perfect tongue out at my surgeon in October that same year he was delighted and confused at the same time. From that day on he referred to me as ‘the lady who cured herself’.
When he politely asked what I’d done to bring about the results he nodded his head sagely when I talked about cutting out sugar, avoiding alcohol, and adding high dose supplementation. Although he didn’t personally advise patients to do any of these things he believed they had merit. But once I started using words like methylation and redifferentiation the nodding slowed down and his eyes glazed over; we were no longer speaking the same language. Neither did he ask me to provide him with any information to pass on to other patients suffering from the same condition. As far as he was concerned I was an anomaly. His knowledge and opinion about the disease was unchanged, and I’m sure he went on to tell the subsequent PVL patients about the irreversible nature of their condition.
I’m not telling this story to insult my lovely surgeon, I’m using it to illustrate a fundamental truth of cancer care: we all have our own take on it. Patients, surgeons, oncologists, nutritional therapists, reiki practitioners, medical mediums, psychospiritual counsellors… we all have some pretty fixed ideas on what needs to happen to get through cancer, and they may all have some merit but no one should be allowed to claim a monopoly, nor undermine other potential routes for healing.
You rightly view your surgeon, oncologist and radiologist as experts in cancer, but they are expert only in the medical approach, and currently the medical approach is stubbornly narrow in its focus. If you want to be sure you are making the most of every opportunity to turn your health around and live to a ripe old age you need to look for experts in other aspects of the disease. Our understanding of cancer is growing faster than the health service can handle, and newly diagnosed patients are not being informed of everything that’s available beyond the tired and toxic trio of surgery, radio and chemo. Repurposed drugs, metabolic manipulation, hyperbaric oxygen, hyperthermia… all these approaches are accumulating evidence that suggests they may be of stunningly high value with refreshingly low toxicity. Moreover, it is becoming clear that the best results happen when multi-disciplinary approaches are used, approaches that include conventional treatment and seek to improve their effectiveness.
If you are reading this you are probably dealing with a cancer diagnosis yourself. Most cancer patients I meet see it as a sort of wake up call – an urgent opportunity to reboot their health and their lives. Most of us have a strong sense of what we need to do to be healthier, and many of us have been ignoring inner voices telling us to take better care of ourselves for a long, long time. It’s important to realise that conventional cancer treatment alone is not designed to be a journey back to sparkling health — the focus is almost entirely on eliminating cancer cells by any means necessary. As a result most patients finish treatment in a worse state of “health” than when they started, albeit minus a few billion unwanted cells. So if we go through the treatment process without making any diet and lifestyle changes then the door is left wide open for recurrence. The promise of longer term recovery involves correcting the tumour microenvironment and re-establishing immune status in ways that are as personal as your fingerprint.
Cancer occurrence and recurrence has historically been viewed as a random pattern and, while recent research has added a lot more information to the question of why it happens, we are still struggling to understand why some people survive and others don’t. In my opinion that’s because we’re measuring the wrong things. We are tracking cancer survival statistics based on medical treatment and getting nowhere. Meanwhile sites like Radical Remission and Chris Beat Cancer are recording stories of people who get better without treatment and finding many common factors including radically changing your diet, using herbs and supplements, taking responsibility for your health, and various ways of finding more fulfilment in life. I find myself wondering what we would find if we tracked these same factors for patients inside the health service too — maybe the results wouldn’t be random after all!
What I’m trying to say is that your beliefs about cancer and the efforts you make to improve your own health after diagnosis are an important part of your recovery. I firmly believe that this is the wrong time to hand your health over to someone else to fix. Our knowledge of quantum mechanics and placebo effect should make that no surprise. Of course your intention will change the outcome of the experiment! That alone is a good reason to be actively involved and invested in the solution, and to maintain a strong personal belief in your own ability to beat it. I encourage you to tune in to yourself to see what you feel drawn towards and don’t let anyone else’s negative beliefs shape your own. Work with the wonderful experts in the NHS but cast the net wider too. Build your own team of experts to guide you back to health, and ensure that they are open minded enough to work with your ideas about health as well as their own.
If you’d like me to help you with that, please book an exploratory chat at http://www.meetme.so/dawnwaldron.
I look forward to hearing from you.
Gosh I had no idea about the PVL but i agree with all you have said about the effect of diet on our recovery.
It was a long time ago now, Vicky. I was signed off in 2014 – but it was a scary (and painful) few years!