Less than four days ago, a young Australian woman died of a very rare type of cancer. Most of my American and probably many of my European readers have never heard of her, but in Australia she had become quite famous over the last seven years as a major proponent of “natural health.” Her name was Jess Ainscough, but, like a certain American woman who has become famous for promoting dubious science, she was better known by her “brand” name. That brand name was The Wellness Warrior.
I first encountered Ms. Ainscough about a year and a half ago and have been intermittently following her career ever since. I’ve even blogged about her three or four times during that period over at my not-so-super-secret other blog. However, for whatever reason, even though it was my intent to write about her here on Science-Based Medicine, I never got around to it. Her death prodded me to write now, because her tale is a cautionary one important enough that I believe there should be something written here about it. Given that, those of you who follow my cubical other self will find some of this post repetitive. However, think of it as the first opportunity I’ve had to tell the story from beginning to end, along with a major deconstruction of the Gerson protocol. (Yes, unfortunately the Gerson protocol figures heavily in this story.) It’s a story that has led to the deaths of at least two people, and whose harm to others is impossible to quantify, given that the reach of The Wellness Warrior was long, at least in Australia.
The birth of The Wellness Warrior
Jess Ainscough’s “journey,” as she liked to call it, began in 2008, when she was 22 years old, as she relates in an article for DOLLY magazine from three years ago entitled “I’m healing myself from cancer naturally“:
I was living in Sydney at the time and working as the online editor for DOLLY magazine. I was living an ideal life for someone in their early twenties – burning the candle at both ends, paying no attention to how my actions could affect my health, but having a whole lot of fun while I was at it.
Everything was going exactly according to my life plan. Or so I thought.
On the 24th of April, 2008 I went to see my hand surgeon to have a cast removed, following an operation I had to biopsy some lumps that had been popping up all over my left hand and arm.
After taking the cast off, my doctor told me the news that would change my life in too many ways to predict. He said that I had cancer, and that the type of cancer I have is so rare that not many doctors know how to treat it.
Epithelioid sarcoma doesn’t respond to chemotherapy or radiation, and my only chance of prolonging my survival would be to have my arm amputated at the shoulder. But essentially, my condition was incurable.
This is the part of Ainscough’s story that has always puzzled me. It isn’t the part about her surgeon recommending an amputation. To me it sounds as though the operation that he recommended was either a shoulder disarticulation or, even more radical, a forequarter amputation, which involves removing not just the arm, but the shoulder joint and shoulder blade. Now here’s why this part of the story puzzled me. An operation as radical and disfiguring as shoulder disarticulation or forequarter amputation is usually not offered for palliative purposes. Let’s just put it this way. It’s an operation so uncommon that I’ve never done one; in fact, I’ve never even seen one done. Yet it is an operation that is occasionally necessary for sarcomas in the shoulder area, when attempts at limb-sparing surgery fail. If the surgeon was offering this operation to Ainscough, I strongly suspect that he didn’t think her cancer was “incurable.” Yet that word keeps popping up over and over again in Ainscough’s narratives. I suspect, but can never know one way or the other, that, because this cancer is so rare her doctors were pessimistic. Also, as we will see below, this type of sarcoma is prone to recur after excision.
Be that as it may, it would have been very difficult not to feel great sympathy for Ainscough in 2008. It’s hard to imagine facing the prospect of losing one’s arm at age 22 as the only chance at long term survival. Even as a middle-aged guy, I wonder if, faced with the same choice as Ainscough, I would be able to do it. Certainly at the very least, losing an arm would end my career as a surgeon. To be honest, I just don’t know. No one does, until she’s faced with such a decision.
So what is epithelioid sarcoma? A rare cancer with an incidence of around 0.3 to 0.4 per million (yes, million), epithelioid sarcoma is not among the most fast-growing of cancers. Indeed, it is slow-growing, but it is difficult to eradicate. Wide surgical excision is the recommended treatment because it’s the only thing that is known to prolong survival. The usefulness of other treatments remains unclear, because this cancer is so rare that there likely will never be a randomized, controlled clinical trial for adjuvant chemotherapy and/or radiation. In any case, epithelioid sarcoma frequently presents exactly as Ainscough described in her article, as firm or hard palpable masses, either in the deep soft tissue or the dermis (deep layer of the skin). The superficial lesions frequently ulcerate and are sometimes misdiagnosed as a poorly-healing wound. Unlike other sarcomas, epithelioid sarcomas tend to metastasize to lymph nodes.
As slow-growing as epithelioid sarcoma is, unfortunately, it’s also prone to recurrence after excision. It’s also prone to metastasize. However, if there’s one thing about Ainscough’s story, it’s that, even in her last blog post before the end, she emphasized that the tumor still hadn’t spread beyond her arm. (More on that later.) In general, radical excision, if feasible, is recommended to treat epithelioid sarcoma because less radical excisions result in recurrence rates as high as 77% in some studies. Also, regional lymph node metastases and local recurrence correlated with increased distant metastatic disease (such as lung or elsewhere) and decreased survival.
Even so, according to a review of the SEER database the ten-year survival for patients with epithelioid sarcoma is on the order of 61% (72% for patients between the ages of 17 and 30), and for patients with local disease and no evidence of lymph node or other metastases (i.e., patients like Ainscough) the five year survival rate can be as high as 75%. Of course, those survival rates assume treatment with successful surgery to widely excise the cancer; without surgery, five year survival is 35% and ten year survival is 33%. This implies that there is a subset of these cancers that is fairly indolent, as the vast majority of patients who are going to die of their disease do so within five years, with additional deaths after five years being relatively few. Granted, these are optimistic estimates. If Ainscough had more extensive regional tumor involvement, according to the SEER database, her expected ten-year survival would have been on the order of 49%. Still, that’s hardly “incurable,” and her story sounds as though her sarcoma probably had more favorable characteristics.
When I first encountered Ainscough, I noted that, although her sarcoma was very likely to result in her demise (which, sadly but not unexpectedly, it ultimately did), it might not happen for several more years. (Unfortunately, it was only a year and a half.) Worse, however, by refusing surgery, Ainscough decreased her chance of surviving 10 years by at least half. Just how much, it’s very, very hard to say. This particular tumor is so rare that there just aren’t a lot of data about how best to treat it other than with surgery. It’s unclear whether adding chemotherapy prolongs survival, although it is likely that postoperative radiation decreases the recurrence rate. What we can say is that a seven year survival after diagnosis without surgery is still well-within the expected range for patients with epithelioid carcinoma who do not undergo surgery. It is not out of the ordinary and thus gives no impression that whatever she did during her tenure as The Wellness Warrior had any effect whatsoever.
That being said, Ainscough relates that she was even ready to have the surgery, even to the point of having “signed the papers,” but “Baby Jesus, Buddha, Elvis – or whoever is up there – must have been looking out for me, because two days before I was due to have the operation, my medical team came to me with an alternative option.” That alternative was isolated limb perfusion. Basically, this is a technique sometimes used for soft tissue sarcomas of the extremity, or multifocal melanoma that can’t be resected without amputation, to try to destroy the tumor. As its name implies, isolated limb perfusion involves isolating the limb from the systemic circulation and infusing it with very (and I do mean very) high doses of chemotherapy. That’s what necessitates the isolation of the limb’s circulation; the concentration of chemotherapy is so high that if it leaked back into the rest of the circulation the consequences could be disastrous. Isolated limb perfusion can often cause seemingly near-miraculous results, even for melanoma and sarcoma, and apparently that was the case for Ainscough. Unfortunately, tumors tend to recur after isolated limb perfusion, and that’s exactly what happened to Ainscough about a year later, which led to the doctors recommending an amputation of her arm at the shoulder again as her only real chance of prolonging her survival.
The way I saw it I had two choices. I could let them chase the disease around my body until there was nothing left of me to cut, zap or poison; or I could take responsibility for my illness and bring my body to optimum health so that it can heal itself. For me it was an easy decision.
I began looking at the different ways I may have contributed to the manifestation of my disease and then stopped doing them.
I swapped a lifestyle of late nights, cocktails and Lean Cuisines for carrot juice, coffee enemas and meditation and became an active participant in my treatment.
This research led me to Gerson Therapy which ensures you have a perfectly balanced diet for optimum health, assisting your body to flush out nasties whilst feeding it with all the goodness it needs to flourish.
The therapy involves drinking 13 fresh organic veggie juices per day (yes that’s one an hour, every hour of my waking day), five coffee enemas per day and a basic organic whole food plant-based diet with additional supplements.
For two years I devoted my entire life to healing, to the extent that I was effectively housebound.
I am ecstatic to report that it has worked for me. I have had no cancer spread, no more lumps pop up (they were popping up rapidly before) and I can actually see some of my tumours coming out through my skin and disappearing.
The Gerson therapy. Yes, Ainscough found one of the most ridiculous forms of quackery out there, and thus was born The Wellness Warrior. As of three years ago, she thought and taught that it had controlled her tumor, deluding herself into believing that just because tumors popped out of her skin and then disappeared it meant some sort of therapeutic effect had occurred. In actuality, it’s not at all uncommon for some cancers like epithelioid sarcoma to do just that. They grow to a certain size, erode through the skin, and then seem to disappear. As is the case with The Food Babe, Ainscough started blogging about her “journey.” Because she was pleasant, intelligent, and telegenic, she soon became more and more famous, to the point where she became a common fixture on Australian media and could book speaking tours that were well-attended. Her books sold, as did her other lines of products.
All the while, her cancer was slowly progressing.
The Gerson Protocol
I’ve written about the Gerson protocol before in the context of a medical propaganda movie, The Beautiful Truth, that promoted the Gerson treatment. In light of Ainscough’s death from cancer, however, it’s worth revisiting, as it’s been a few years since I discussed Max Gerson and his protocol.
Believe it or not, as recently as 25 years ago, the American Cancer Society published a regular series of articles in its journal, CA: A Cancer Journal for Clinicians, called at various times “Unproven methods of cancer management” or “Unproven methods of cancer treatment.” These brief (usually less than three page) articles discussed—you guessed it!—various forms of cancer quackery. Indeed, I systematically downloaded pretty much every one of these articles that I could find dating back to the early 1960s. One of these days, I’ll do a post about it, particularly since the ACS stopped publishing these articles around the time of the rise of “complementary and alternative medicine” in the 1990s. There’s some wild stuff there that even I hadn’t heard of. In the meantime, I refer to the last such article the ACS did on the Gerson method.
Basically, the Gerson method is considered the granddaddy of “metabolic therapy” for cancer, having been developed by Max Gerson, MD in the 1920s. Gerson wrote in the 1950s that “cancer is not a single cellular problem; it is an accumulation of numerous damaging factors combined in deteriorating the whole metabolism, after the liver has been progressively impaired in its functions.” To remedy this, Gerson developed a radical nutritional program combined with purges (particularly coffee enemas) that he believed would cure cancer and all degenerative diseases. Specifically Gerson:
…assumes that the weaker, “abnormal” cells that exist in every organism are first hurt and, in their anxiety to survive, change their metabolism from oxidative to fermentative. Thus, they leave the harmony of the normal cells and sustain themselves by destroying neighboring tissue with their toxic metabolic products, eventually killing the host body itself.
The Gerson treatment, it turns out, seeks to recreate a “near normal condition of the oxidizing system in the body, to which malignant cells with the fermentation system cannot adapt.” The ACS notes that promotional materials from the Gerson Institute state that the treatment is “able to achieve almost routine recovery—90% or better—from early to intermediate cancer” and, after cancer has metastasized to the liver or elsewhere, “about 50% recoveries can be achieved. Results are less certain if the patient has been poisoned by chemotherapy.” Looking at the Gerson Institute website now, I don’t see such clear-cut language, but I do see a lot of testimonials in its brochures. They seem to be of the usual variety. For instance, one woman had stage III melanoma and attributed her cure to Gerson, even though it’s not clear whether she had surgery or not. (Surgery alone cures melanomas that are curable, particularly in the 1990s.) There’s a man who sounds as though he was probably misdiagnosed with pancreatic cancer. Maybe I’ll do a separate post one day on the testimonials used to sell the Gerson therapy, as Max Gerson’s youngest daughter, Charlotte Gerson, who is almost 93, still runs the Gerson Institute in San Diego and (as noted by Jess Ainscough herself when she was there, quoting her as saying “Orthodox medicine has killed more people than Hitler and Stalin combined”) travels to the Gerson Clinic in Tijuana at least once a week.
In the meantime, I will take note that one thing heavily promoted by the Gerson Institute is Max Gerson’s original book A Cancer Therapy: Results of 50 Cases. In this book, 50 cases of cancer that Max Gerson supposedly cured with his treatment were discussed. Fortunately for me there’s no need for me to go through and analyze all 50 cases, because one of our readers, Peter Moran, already did just that a long time ago. Let’s just say that he was underwhelmed. There were lots of questionable diagnoses (e.g., no biopsy ever done), cancers already cured with surgery before the patient was treated with the Gerson protocol, and big holes in other stories. None of the cases appeared to be particularly convincing evidence for the efficacy of Gerson therapy.
In any event, even though a conversion to anaerobic (without oxygen) metabolism is a feature of many cancers (it’s known as the Warburg effect, something I’ve discussed before), there is no scientific reason to think that Gerson’s diet or “detoxification” would do anything to reverse that or to create a hostile environment in which anaerobic cancer cells couldn’t thrive. Let’s take a look at the summaries of the Gerson protocol that can be found on the Gerson Institute website and on Jess Ainscough’s blog. (Unfortunately, as I wrote this, I discovered that much of Ainscough’s blog has disappeared and that much of it is not in the Wayback Machine any more. Fortunately, I kept the complete text of at least a few of her posts.) Let’s start with the Gerson website, which describes the diet:
- Thirteen glasses of fresh, raw carrot/apple and green-leaf juices prepared hourly from fresh, organic fruits and vegetables.
- Three full plant-based meals, freshly prepared from organically grown fruits, vegetables and whole grains. A typical meal will include salad, cooked vegetables, baked potatoes, Hippocrates soup and juice.
- Fresh fruit and vegetables available at all hours for snacking, in addition to the regular diet.
The Gerson therapy requires huge amounts of these fruits and vegetables to make these juices and meals, up to 20 lbs. per day or even more, as well as these supplements:
- Potassium compound
- Lugol’s solution
- Vitamin B-12
- Thyroid hormone
- Pancreatic enzymes
Note that pancreatic enzymes come from, well, animal pancreases, and thyroid hormone comes from, well, animal thyroids, while Lugol’s solution is a solution of elemental iodine and potassium iodide in water, named after the French physician J.G.A. Lugol that was commonly used as a disinfectant. To top all this off (if you’ll excuse the term), the Gerson therapy involves coffee enemas, lots and lots and lots of coffee enemas, several a day. Meanwhile, variants of the Gerson therapy also include:
- ozone treatment (given by enema or via infusion in autologous, heparinized blood or directly into patients’ blood vessels)
- hydrogen peroxide (topically, rectally, or orally)
- intravenous “GKI drip” (glucose, potassium, and insulin solutions)
- “live cell therapy”
- castor oil
- clay packs
Particularly amusing is a PDF on the Gerson Institute website entitled “Scientific Basis of Coffee Enemas“:
Coffee enemas are a vital part of the detoxification process of the Gerson Therapy. The purpose of the enemas is to remove toxins accumulated in the liver and to remove free radicals from the bloodstream. In the 1920s, two German professors tested the effects of infused caffeine on rats. They found that the caffeine travels via the hemorrhoidal vein and the portal system to the liver, opens up the bile ducts and allows the liver to release bile, which contains toxins. The theobromine, theophylline, and the caffeine in coffee dilate blood vessels and bile ducts, relax smooth muscles, and increase the bile flow.
This is, of course, utter nonsense. The liver needs no caffeine, theobromine, or theophylline to detoxify, nor does increased bile flow mean the liver is “detoxifying.” As our own Scott Gavura discussed, nor is it necessary to boost your liver’s glutathione production, certainly not by coffee enema given that the same effect, even if it were necessary, could be had by just drinking it. Indeed, the rationale for coffee enemas derives from the concept of “autointoxication,” which was actually a concept in mainstream medicine in the late 1800s and early 1900s but was dying out by the 1920s (when Gerson developed his therapy), mainly because our understanding of colon physiology had improved markedly and scientists realized that there was no basis for the concept. The idea was that we are “poisoning” ourselves through the colon and other organs and that we needed “detoxification,” such as enemas, purges, and other sorts of treatments. Indeed, sometimes this was taken to an extreme, with surgeons removing the entire colon to treat illnesses that had nothing to do with the colon, a particularly risky endeavor with a not-trivial mortality rate in the days before antibiotics. Like much of the Gerson protocol, the need for coffee enemas is based on an understanding of human cancer and physiology that was becoming outdated a century ago.
It was a very rigorous treatment as well, stretched out over two years. Jess Ainscough herself described a typical day. Because her content is rapidly becoming inaccessible, I’ll quote it in full:
I’ve had a couple of people ask me to write out a “day in the life” type post outlining a day of the Gerson Therapy. Oh how sorry you will be! Just kidding. I guess this will give you an idea of what the program entails on an hourly basis – even if you do nod off just reading about the sheer monotony of my days.
When I first got home from the Gerson clinic, it was extremely overwhelming. At the clinic we had everything done for us by the lovely Mexican doctors, nurses and kitchen staff. Here at home, it’s all up to my family and I. Saying that, I am incredibly lucky to have such an amazing family. Mum gave up work so that she could be my full-time carer. She does all the shopping, food preparation and some of the juices. I seriously don’t know how she does it. On weekends my dad and boyfriend are usually home so we have extra help.
7am: drag myself out of bed and meditate
7.30am: first coffee enema for the day
8am: breakfast (orange juice and oats with honey, banana, raisins and kiwi fruit)
9am: green juice
9.30am: carrot and apple juice
10am: carrot and apple juice, work on blog and other writing bits and pieces
11am: carrot juice, work on blog and other writing bits and pieces
12pm: green juice, coffee enema #2
1pm: carrot and apple juice, lunch (soup, salad, veggies, potato), watch a bit of Oprah while we eat
2pm: green juice, do more writing
3pm: carrot juice, yoga
4pm: carrot juice, take my dog for a walk
5pm: carrot and apple juice, meditate
6pm: carrot and apple juice, coffee enema #3
7pm: green juice, dinner (soup, salad, veggies, potato)
8pm: watch a bit of TV or read in bed
Every day is exactly the same as the one before, except on Tuesday and Thursday morning I take castor oil. Until recently I was doing five coffee enemas a day. I fit them in at 7.30am, 10.30am, 2pm, 6pm and 9pm. Pretty exciting stuff, huh. The one thing that is pushing me through the therapy is the thought of how amazing it will be once I finish. I doubt I will know what to do with myself. I don’t even remember what it’s like to be able to leave the house for more than an hour without worrying about juices or enemas. That day will be here before I know it though. It’s hard to believe I’m already three months in to the program. I’ve got 15 to go. Come on 15th October 2011!
She did this for two whole years, exulting over having consumed 8,760 glasses of juice, 2,920 coffee enemas, 1,460 baked potatoes, 1,460 bowls of Hippocrates soup, 33,580 supplements, and 174 shots of castor oil. In the process, she became an evangelist for Gerson, writing about the Gerson protocol and coffee enemas frequently on her blog and appearing in videos such as:
There are many more that were on her YouTube channel, but virtually all of her videos have since her death been marked private. You’ll note that the three I found above were on other YouTube channels. I also found this video, which I had thought lost but which is on HealthTalksTV and features Ainscough demonstrating how to prepare and administer a coffee enema (noting that you “can’t use instant” and have to use organic coffee—nor can you use just tap water):
Jess Ainscough did de-emphasize Gerson in the three years or so since she finished doing the Gerson protocol, but she never disavowed it. Instead, as The Wellness Warrior, she emphasized more the entire “natural” lifestyle, the smoothies, the vegan cooking, and some supplements. But the core of her transformation into a “natural health” celebrity was her original embrace of the Gerson protocol, as she said on more than one occasions that she was healing herself of cancer naturally, while all the while her cancer continued its slow, relentless progression.
Wishful thinking meets the reality of cancer biology
I said at the beginning that The Wellness Warrior’s delusions claimed not just her life, but another. This is the part of the story where I first encountered Jess Ainscough, the part of her story where her mother Sharyn died of breast cancer, as Jess related on her blog:
As many of you know, my Mum had breast cancer for the past few years. She was diagnosed about a year after I started Gerson Therapy, and seeing how much the therapy helped me, she went straight on it herself. However, unlike my journey, Mum’s was fraught with complications. She had been doing well and seemed to make it through her obstacles, however a few months ago it became clear that the cancer was getting ahead of her. She was in pain, lost a lot of weight, lost all energy, and her health quickly deteriorated. We explored lots of options however Mum choose to see out the final months of her life in a way that was exactly right for her.
Last Friday, after putting up the bravest fight I’ve ever witnessed, my mum passed away. She went peacefully and was comfortable with no drugs, which is what she always wanted. Her whole family was in the room, my dad and I were holding her hands and Edie was at the foot of her bed. She flickered her eyes, took one last gasp and then went off to sleep.
Here’s what Ainscough wrote when her mother was first diagnosed:
My family has been pretty much consumed by this disease for almost four years, so when my mum was diagnosed with breast cancer in April this year we knew exactly how to deal with it. Following her diagnosis, my mum refused any sort of conventional interference. She said no to a mammogram and a biopsy, told them that she wasn’t interested in going down the path of surgery, chemotherapy and radiation, and instead chose the same therapy as me.
As a result, her mother died, probably unnecessarily, about a year and a half ago after two and a half years, which is pretty close to the known median survival of untreated breast cancer. I haven’t been able to find anywhere who influenced whom, but I’ve seen it stated that Sharyn Ainscough was actually the one into alternative medicine first and a major influence on Jess Ainscough’s decision to “go alternative.” Whatever the case, whoever influenced whom, the embrace of Gerson therapy resulted in one death that was very likely preventable (Sharyn) and another that was possibly, perhaps even probably, preventable (Jess).
In fact, it was around this time that it became apparent that Jess Ainscough’s tumor was progressing. She hid her arm more and more in public appearances, as Rosalie Hilleman documented on her blog in posts entitled “The Wellness Warrior: Denial, Delusion, or Dishonesty?” and “How not to do transparency.” These included photos of Ainscough showing that her arm was looking worse, her hand was becoming contracted and developing open sores, and her body was becoming more hunched. I noted the same things over at my not-so-super-secret other blog.
A few months after the death of her mother, in response to criticism in the wake of her mother’s death and observations by critics that her arm was looking worse, Ainscough took to her blog to explain herself. Indeed, she even went so far as to say:
I’m not “in remission” or “cancer free”: I’m living and thriving with cancer, six years after diagnosis. And I’m going to continue to heal and thrive, with or without cancer, for as long as my personal journey on this planet dictates. I’ve never claimed to have cured myself (if you’ve seen this written online or in the media it’s because I have often been misquoted – these kinds of statements are false conclusions made by the author, not misleading information from me). However, I also don’t go around saying “I have cancer” because I don’t like to give power to the dis-ease. Whenever someone asks me about my health and how I’m feeling I say, “I’m awesome, I feel amazing!” because I am and I do. I live a very full, happy and healthy life – despite having cancer in my arm.
I don’t claim that Gerson Therapy cured me: Gerson Therapy played a big part in my journey (it was two years of my life), but it’s certainly not my whole journey. It was what I needed at the time I went on it, in order to detoxify and nourish my body. There was a time when it appeared that everything I had been doing physically had stabilised my condition, but in recent months it has flared up again.
In counterpoint, Rosalie Hilleman documented several instances in which The Wellness Warrior had said just that, referring to herself as a “cancer survivor,” saying that she cured her own cancer, and appearing in interviews or articles where she’s referred to as having “beaten” cancer “naturally” with the Gerson protocol.
On September 26, 2014, Ainscough apologized on Facebook that she would not be able to speak at the Utopia Women’s Wellness event in Melbourne the following week. In her announcement, she cryptically wrote:
I had such a great time at the Sydney event, but the energy it required exerted me in a way I’m not yet ready for. As I mentioned in my talk that day, over the past year my condition has progressed from stable to aggressive. I’m on a healing roller coaster and I really need to listen to my body. This means that I will be continuing my hibernation a little longer to give myself my full undivided attention. Doing anything less would be a contradiction to the message I was planning on sharing with you at the event.
This “hibernation” is something that Ainscough undertook in June as a result of her declining health. By the time of her announcement in late September that she had to cancel her public appearances, it was clear that Ainscough could no longer hide that her health was deteriorating significantly. Indeed, from her last ever blog post in December, it was clear to me that she was likely not long for this world:
When I left you back in June to begin a period of self-care hibernation, my plan was to get my health back in tip top shape and then spend some time creating some awesome new stuff for you. The reality, however, is that I’ve spent the whole time focused on my health. For the last few months, I’ve been pretty much bedridden. Let me fill you in on what’s been going on with me …
This year absolutely brought me to my knees. I’ve been challenged, frightened, and cracked open in ways I never had before. After my mum died at the end of last year, my heart was shattered and it’s still in a million pieces. I had no idea how to function without her, and it turns out my body didn’t either. For the first time in my almost seven year journey with cancer, this year I’ve been really unwell. I’ve lived with cancer since 2008 and for most of those years my condition was totally stable. When my mum became really ill, my cancer started to become aggressive again. After she died, things really started flaring up.
I was truly saddened to hear this. The question that first came to my mind when I read this was this: What did she mean? How bad was it? It was pretty bad:
I’ve had scans to detect what’s going on in my body, and I can report that the disease is still contained to my left arm and shoulder, however I do have a big fungating tumour mass in that shoulder that’s causing me dramas. Over 10 months of non-stop bleeding from the armpit has rendered me really weak (and uncomfortable) and as a result I’ve had no choice but to stop absolutely everything and rest. Tallon [Jess’ fiance], my freaking hero, has had to step up and help me with everything from making food and juices, doing all of our housework and laundry to doing my hair.
So, in other words, Ainscough had the sarcoma equivalent of carcinoma en cuirasse, a tumor that has eroded through the skin and started to bleed. Apparently, she also started undergoing radiation therapy, although I have no independent confirmation of this other than from some commenters after this blog post. I have no idea what finally ended Jess Ainscough’s life. Given her description of frequent bleeding from her tumor mass to the point where she was anemic suggested to me that the tumor was fungating, eating through the skin. At the time, she said her scans indicated that the cancer hadn’t spread beyond the arm, but that didn’t mean it still couldn’t kill her. I suspect a combination of unrelenting chronic blood loss and perhaps a necrotic tumor becoming infected and leading to sepsis were the terminal events. If such sepsis was not recognized and treated promptly it could certainly have rapidly killed her in her weakened state. But this is all just speculation, an educated guess. I have no idea what the immediate cause of Jess Ainscough’s death was. It doesn’t really matter that much anyway. It’s enough just to say that her cancer finally killed her.
Cancer deaths like this always sadden me. Jess Ainscough had a shot, one good shot. That’s usually the case for most cancers; your first shot is your best shot, and we as cancer doctors need to make it count. She didn’t take her first shot. What saddens me even more is that I can understand why she didn’t take it, as, through a horrible quirk of fate, her one first, best shot involved incredibly disfiguring surgery and the loss of her arm. Still, I wish she had taken it and hadn’t instead decided to become an icon of “natural healing.” In her role as the Wellness Warrior, and in her promotion of Gerson quackery, Ainscough, with the noblest of motivations in the beginning, did harm and likely led some cancer patients down the path of quackery and preventable death. In this, Jess and Sharyn Ainscough were also just as much victims as any other cancer patient who chooses alternative medicine quackery. Unfortunately, she also promoted that same quackery, which made them complicit as well. Being simultaneously a victim and an enabler or promoter is frequently the case with believers in alt-med cancer “cures.”
All the more sad.
As outraged as we might have been over Ainscough’s promotion of the Gerson protocol in life, as we mourn, we should also remember that Jess Ainscough was also a victim of the very pseudoscience that she promoted. Now that she is gone, what I want to know is this: Who are the quacks who enabled her and egged her on? Who are the quacks who conned her into believing that Gerson therapy would save her life? They helped create the Wellness Warrior, and Jess Ainscough has finally paid the price.
The only thing that can be hoped for is that those promoting diet as a near panacea for everything will take a more critical look at their activities. I won’t hold my breath waiting, however. What I expect to find are excuses. I suspect they won’t be long in coming. After all, her social media accounts have disappeared, and her blog and website content are now inaccessible except through Google caches, which will disappear soon enough. They are no longer needed for their purpose.