Nina Joy surviving metastasised breast cancer in bones, liver, lungs and lymph

Nina Joy  surviving metastasised breast cancer in bones, liver, lungs and lymph

At 51, after many years in banking, Nina Joy launched her second career as a professional speaker specialising in positivity, a quality she already possessed in spades.  She would need all of it, and then some when she was diagnosed first with breast cancer and, following further tests, Stage 4 cancer metastasised to the lymph, liver, lungs and bones. ‘There is no stage 5 cancer,’ observes Nina, a Yorkshire blonde, who is divorced and lives alone.  ‘I felt as if I had been handed a death sentence.’  Three years on, full of life, and having written her second book, ‘How to be a Cancer Maverick’, the self-styled ‘cancer maverick’ describes how she rejected the straight medical path down which doctors directed her, and confounded her ‘dire’ prognosis by creating her own integrative prescription for thriving survival. Here Nina is interviewed by Madeleine Kingsley.

Before spotting an inverted nipple in the bathroom mirror, Nina Joy had enjoyed such good health that she didn’t even know her GP’s name.  “I know now that you should look after yourself all the time,” she stresses. “But I’d always taken my wellness for granted. I don’t think I’d ever stopped to listen to my body.  I didn’t know to do so.  Looking back I hadn’t been feeling marvellous for a while, but I’d just pushed on through, as one does. I’d always eaten quite well. I didn’t smoke so I don’t think I was an obvious candidate for cancer. But that, of course, is true of many people who get it.’

The locum doctor, who first examined and referred Nina to the breast Clinic at her Leeds Hospital, said quite reassuringly, ‘Cancer doesn’t usually present like this.’ But Nina had felt from the start that the change in her breast denoted something serious. “It’s a good job the doctor who examined me the day I went for tests is not a poker player,” she says, “because  I saw a shadow pass over his face as he poked and prodded. ‘It’s not good news, is it?’ I asked him.  He looked at me as if uncertain whether to break the bad news to me, as I’d come in on my own, not expecting instant results.  I then had a biopsy and as the needle was withdrawn, the doctor held it to the light and pronounced ‘These are definitely cancer cells’. I know that doctors have to be matter of fact, but this was really blunt. I thought  ‘You can not realize the impact of what you are saying.’ Before being dispatched, dazed, back into the city, Nina was told exactly what treatment now lay ahead. “My future was laid out in graphic, brutal detail … mastectomy, and chemotherapy; you’ll have this, you’ll have that. And all the while I was thinking ‘How could you possibly know what you are going to do and what is the best treatment, when you’ve only just laid eyes on me? How do you treat someone you know nothing about?’  In my professional field of financial services, you first do a full fact-find. You go away and prepare a report and then you come back with recommendations, I was used to presenting business cases to the board with two or three options.  There are always choices to make; I couldn’t believe that they decreed one path to follow and no alternatives at all.  It didn’t seem right.  What I know now is that they don’t look at each individual. They just treat everybody the same”.

Although the questioning maverick was awakened in Nina that day, she didn’t voice her doubts or challenge what she’d been told. “It was all going on in my head; I didn’t speak out back then, because I didn’t have the knowledge. I was lucky in that nobody close to me ever had cancer. I didn’t know what was wrong or right – only how it felt to me.”

Nina was sent for further tests, which she assumed to be entirely routine, and returned for a second appointment, which, she expected,  would clarify the treatment protocol – ‘which drugs, in what order, how long …”  But when she heard that she’d been upgraded to see a Professor in person,  and not just a registrar, she guessed that this was  not a good sign – certainly not the equivalent of being invited to turn left instead of right on an international flight.  The atmosphere in the consulting room as she entered seemed laden with a dark cloud – ‘an absolutely tangible feeling’.  Nina was right to have her sister there for support this time, because the doctor she came to know as ‘Lady Prof’  said ‘You know already that you have breast cancer and it’s spread to the lymph. We’ve now had the results of subsequent scans and we are no longer looking at a cure.’  Then she delivered the words that devastated Nina ‘It’s spread to your lungs and your liver and it’s in your bones.” In my head I thought “God! I’m riddled with it. It’s everywhere. “‘

Nina still recalls reeling out into Leeds city centre on that Thursday teatime with the surreal sense that her world had come to an end, while everyone else’s blithely carried on. “They were running for buses, chatting away. However little I knew about cancer, I knew that breast cancer doesn’t necessarily kill people, at least not quickly. Liver cancer and lung cancer - they do.’ 

Not even a positivity guru could access her inner Pollyanna at such a grim time. But in the few weeks after her appointment Nina had started to compute what she was dealing with and to make her own enquiries. “I wasn’t at this stage saying an absolute ‘no’ to chemo”, she recalls, “in fact, I was mentally preparing.  I had my hair cut short in the expectation that I would likely lose it during the coming treatment.  So I was almost going along with the hospital plan, but thinking inside that it seemed so wrong. 

Chemotherapy is supposed to stop or shrink tumours, but at huge cost to your immune system and general health.  My body seemed to be pretty good at making cancer at the moment, so if they blasted all the tumours, wasn’t it just going to make some more?”

As these concerns played out in her mind, the memory of a name she’d heard five years earlier when on a Mindstore training course, popped into Nina’s mind: “The course – on techniques to harness your own power in order to achieve what you want in life – had made a huge impact on me. I remembered that the guy running it had talked of licensing someone in Germany to use his technique with people who had cancer”.  Google led Nina to the 3E Clinic near Stuttgart. “Now, for the first time since diagnosis, I felt excited. 3E didn’t seem to care if you had one tumour or 15, because what they offered was all about the person. They had spent 20 years studying the people I consider to be the real cancer experts – the survivors.  3E’s website talked of three pillars against cancer – state of mind, dealing with your body’s toxicity and nutrition.  I researched all I could and spoke to them on the phone, but the clock was ticking fast - my first chemo appointment had been booked for two weeks time.”

Nina highlights how hard it was to stand against the conventional approach to cancer: “Our whole society,” she says, “conspires to make you do what other people do and to push you down the mainstream. Cancer didn’t just happen to me; it was also happening to my loved ones, and my sister was really scared when she heard that instead of the chemo route I wanted to go to this little place in Germany and (as it sounded to her) hug a tree and eat yoghurt. The known is so much easier to do than the unknown – and, of course, the NHS is free whereas choosing a different path often costs a great deal of money. Everybody knows someone who has had chemotherapy and come through it, especially with breast cancer. You know that the recovery rates can be really good, so how does that stack up against a place in Germany where I didn’t know anybody let alone anybody who’d recovered? I didn’t want to cause my sister any added stress. I had no one to discuss all this with. The choice was literally down to me. ‘

Ironically, and certainly unintentionally, it was the medics themselves who sent Nina down the cancer road less travelled. At every visit she’d asked the hospital about choices other than chemo, and always been told there was no option. Now, when she announced that she’d decided against chemo, they suddenly offered Tamoxifen as an alternative that might help with the tumours . “At this point’,” she recounts, “they totally lost my confidence. I was livid. ‘Why would I believe you now about Tamoxifen’ I asked. ‘when you’ve already lied to me once by insisting that the only way was chemotherapy?’ When I said I wouldn’t be taking Tamoxifen either, they clearly thought I was barking mad.  They were also very worried for me. They reminded me that I had a dire diagnosis and must get treatment.  “I will get treatment,” I said,  “just not yours.’

Nina booked her five week stay at 3E on a credit card, figuring that if she died, she wouldn’t have to deal with it anyway, and if she survived – well she’d worry about that  later. She set off alone and vulnerable, but looks back on a ‘truly amazing place.’  She received intravenous vitamin C – infusions, a treatment which conventional medics still dismiss.   “You can expect to do a lot of work at 3E, and I would genuinely call it work”, says Nina. ‘The first task is to ask yourself why cancer has come into your life, and what it is trying to tell you. That, in itself, is a big question. My answer was complex, but I had been through some really big changes recently, coming out of corporate life and starting my own business Also my mum had died a few months before I was diagnosed.”

The mental pillar also offered specific techniques for harnessing happiness and positivity. Nina practised visualisation – imagine her tumours disappearing and - particularly took on board the call to gratitude and forgiveness. “I couldn’t be grateful that I had cancer, but I found I could certainly be grateful that it was I who had it and not my sister or my beloved niece Lucie, who’s in her early twenties. I learned that going outdoors into nature is also a leg-up to happiness, as is doing something for someone else, rather than remaining insular and down in the dumps.”  Forgiveness too can prove liberating, and Nina wrote to her ex-husband letting him know how sorry she was for having the affair that prompted their split.

Nina does however stress that positivity should never be peddled as a cure in itself for cancer: “I get quite irritated when I read or hear people suggest this. It’s really mean to all those positive people who do not get better. If positivity alone was the key then I wouldn’t have got cancer in the first place.”

3E instruction on reducing toxicity included reducing the chemicals that can get into your body, and expelling more toxins by skin brushing, bathing in bicarbonate of soda, liver flushing and the classic Gerson stalwart, coffee enemas. Says Nina, “I still do these, and I actually find them quite comforting. The overall state-of-mind message I took away from 3E was one of self-care. If you imagine that you have a sick child to nurture and cherish, that’s how you need to treat yourself when you are ill. We tend not to care for ourselves as we do for others.”

The third pillar – nutrition – stressed the Budwig protocol: every day starting with a mixture of quark and fresh flax-seed oil. Says Nina, “Joanna Budwig proved that the oil alone is not enough, It’s the protein that makes the flax more available to your cells. A vegetarian diet with lots of raw stuff and sauerkraut juice was the 3E protocol – and although Nina still follows it on a pretty much 80/20 basis, she no longer follows it as rigorously as she did in the clinic and for seven months thereafter.  “Once I got home, the juicing and the peeling of carrots, the shopping and preparing became a massive pressure, and I felt this put unhealthy stress on me. So eventually I relaxed a little”. She does continue to take a myriad of vitamins and supplements.

But, after seven months of attempting to be  ‘a real girly swot’ who would do all that she’d been taught and so kick her cancer into touch, Nina had to admit that she was  actually feeling physically a whole lot worse. The tumour in her breast was about to ulcerate through the skin.  She had fluid on the lungs, felt breathless and was unable to walk very far. Huge pressure on her sternum stopped her lying down and she had a big lump under her right arm. “I felt I was fading – in a right state,” she remembers.  “I think that my healthy cells had received a massive boost. So they were going ‘Woohoo!’  and having a really good time. But the cancer itself was too far advanced to respond.” Mentally, at least, she was feeling strong. “So I thought, ‘Right! I’m going to have to try something else, or that’s it’.”

Once again, as Nina often finds, a solution presented itself – this time a variation on the orthodox protocol. “I think we need to be careful; she reflects “of claims to cure cancer by carrot juice or anything alternative alone.  I think this puts undue pressure on people trying their utmost to help themselves, and leaves them feeling like underachievers, as I did.”

Nina now needed a powerful intervention. What she was doing for herself was undoubtedly working but, as she sees it, too gently and slowly for her stage of cancer. “I needed to buy myself some time,” she says, “but how? Using the metaphor of my own financial services background I didn’t want a tied agent – someone to sell me their own particular products, as hospital consultants do. I wanted an IFA - an Independent Financial Advisor who would scan the whole of the market to find just what was right for me.”

That someone was Patricia Peat, a former oncology nurse, from Nottingham. “She only lived an hour and a half from me, but I felt so ill I had to stop and have a sleep on the drive there. Patricia agreed that Nina had done excellent work to tackle her cancer, but suggested ‘chemoembolisation’ from Dr Thomas Vogl in Frankfurt. What differentiates this treatment from regular chemo, is that it is delivered direct, under local anaesthetic, to the affected organ, via a catheter inserted in the groin.  After each session the procedure was to lie in recovery for three hours but Nina was then ready to leave, eat out and fly home the next day.

Nina’s first treatment, in March 2013, filled her with hope and relief – if only because Dr. Vogl had not taken one look at her scans and declared the case beyond help. But she did come home ‘wiped out’ and needed to stay in bed for several days. There followed seven more treatments, which she sailed through, hair intact, though budgeting £5000 for each trip, which included flights for her and a ‘buddy’, meals and the clinic fees.

At the same time as this targeted chemo, Nina finally agreed to a conventional chemo course - of capecitabine in tablet form. However, it was discontinued after hospital scans showed that it had failed to stop the spread of bone cancer from her sternum to her spine and pelvis.  She also began a course of privately-prescribed, low-dose Naltrexone, or LDN, an opioid antagonist used in high dosage for alcohol addiction, and in low dose to address cancer and auto-immune diseases.  Patients add Vitamin D and alpha lipoic acid to the drug, which is now off patent and relatively inexpensive.

Finally her cancer was stilled. Recognising that Dr Vogl had not treated her bones, Nina concludes that what has worked for her “is absolutely the combination of Dr Vogl’s chemoembolisation and the 3E regime. I don’t believe that alternative is right and people who take orthodox treatment are wrong. I believe that you should do what is right for you, that everybody should be fully informed and supported to decide for themselves.  I know I went to Germany for it, but without this conventional treatment I wouldn’t be here today. The alternative stuff alone would not have saved my life.

Nina is not cured of cancer – her tumours remain ‘and’ she says, “On paper I am still terminally ill because officially I have stage four cancer. I can still feel the breast tumour, if I prod hard enough. But my tumour markers on repeated blood tests are below one, so all the indications are that the cancer is dormant.  I am happy with this. I don’t understand the massive preoccupation with getting rid of tumours per se. Why disturb, if no harm is being done?  She has regular thermography and bio-resonance checks as well as hospital follow-ups.  She looks glowing and feels fine and energetic.

Last time she was seen by ‘Lady Prof’’ they chatted about how well she was doing and then the doctor said, ‘Do you mind if I examine you, so that I feel as if I am doing something useful?’  Doctor and patient shared a laugh.

Nina’s book ‘The Adventures of a Cancer Maverick’ is available from www.oodlebooks.com (£9.99). Nina gave Lady Prof a copy.

Nina’s second book, ‘How to be a Cancer Maverick’ (£11.99) along with the first is also in kindle format from Amazon.  Her website is: ninajoy.com
 

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