Last Post

Rona wished to have this post published after her death. She started writing it while in ICU and never had the chance to finish it. She went back to her hospital room with intense pain and several other complications. On July 28th 2019 Rona was transfered to St Christopher’s Hospice.

Rona died in the morning of July 15th 2019.

Alison and myself were with her. She left peacefuly.

Rona was an extraordinary woman. She enjoyed this blog and made many friends in this space.

Thank you all for following her.

With love and gratitute,
Mireille & Alison

 

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[here is the original blog post – it has several blank and place holder that are left as-is]

Last blog post (as at 31 May 2019)

A (premature) post

I never thought I would write this post.  I thought this post would be written in years to come, but unfortunately, life isn’t like that.  We try to control its events, but life is full of surprises.

So if you’ve been following this blog faithfully, I was alive recently, but now am dead.

The cancer got me in the end.

I was trying to drag out the blog posts, but events started galloping.

The gist of what has happened:  In November 2018 I went to Peru to do intensive plant medicine work.  I gave up my house of 22 years and took medical leave. I thought I was doing the right thing as plant medicine work had given me so much since 2014.  I hadn’t realised how homesick I would be.  And how naïve I was to place my faith in indigenous systems of medicine or a medicine practitioners which/who hadn’t really had much experience with cancer.

In March 2019 I returned after altitude sickness showed that I had fluid in the left lung.  I had the lung drained twice in Peru and on returning saw my oncologist.  My lung needed draining again.  A scan showed that there was now cancer in the lung, liver and in the spine.

So I left in November 2018 with locally-advanced cancer, and relatively fit and lively, and returned with Stage 4 cancer.

To say I was overwhelmed is an understatement.

A procedure called pleurodesis was carried out in which the sides of the chest wall are scraped and a talcum powder applied.  The theory was that the lung would expand and stick to the powder.  And this would seal any gaps so any fluid would not accumulate.  A nurse told me that there was a 35% chance the surgery wouldn’t work.  Guess what … it didn’t.

A few days after the pleurodesis, I was dressing the wound and noticed pus in the suture site.  So I went back to hospital and was immediately re-admitted for 5 days and intravenous antibiotics.

I was discharged and went back to stay with some friends.  I returned the following week for the start of chemotherapy, but the lung required draining again, so I was hospitalised and 4 days later had my first session of chemotherapy, a taxol.  The chemotherapy was to be administered on a weekly, rather than 3-weekly basis because my oncologist said that the heavier dose of the 3-weekly protocol would kill me.

That first session resulted in an infection.  So I had to remain in hospital.

I was in hospital the following xx weeks.  Each session of chemotherapy brought on an infection, or sepsis.  My blood pressure went down dangerously low, my heart beat was permanently too fast (resting of 116) and I needed supplemental oxygen, and a drain in my lung.

I was also told the following:  if a healthy person keeled over on the street with a cardiac arrest, CPR would have a 10% chance of succeeding (unlike shown in the movies).  If a person with heart issues had a cardiac attack and had CPR, there would be a 4% chance of succceding.  But if a person with cancer in the lungs or mets had CPR then the chances were 0%.

So basically, if I had a cardiac arrest I would not be resuscitated.

My lung was wonky, my heart was implicated in the cancer, although beating well with no anomalies.

It was very hard to take this news in, as well as the 12 month prognosis by my consultant.

So if you are reading this, I am writing this really quickly as there is so much to be done and I can’t sleep because I am trying to get these things done.

Thank you for reading my blog.  I hope it’s helped you.  God bless you from wherever I am.

Love and gratitude to the following people who loved me on this challenging journey:

 

How to Starve Cancer – please read this book!

[yes, I am still alive, and will be bringing this blog up to date!]

Please read “How to Starve Cancer”.  It is the best book I have read to date on how to beat cancer.

This is not the usual book on cancer diets.

Jane McLelland is a Stage 4 cervical cancer survivor of 20 years.  Stage 4, as we know, is usually a death sentence.

Jane managed to beat this cancer using a mix of diet, off-label drugs, chemotherapy, IV Vitamin C, supplements and exercise.  A clinic in London is currently using her protocol to help other patients.

This is the one book every cancer patient, no matter what stage, should read.

There is also a Facebook page which Jane administers:

https://www.facebook.com/How-To-Starve-Cancer-1667890833515546/

And a study group run by volunteers:

https://www.facebook.com/groups/starvecancer/

The blurb on Amazon.co.uk reads:

“A modern-day ‘Cancer Sherlock Holmes’, Jane discovered that a cancer-starving diet, powerful supplements and a handful of old, forgotten, low-toxicity drugs, when taken together, acted synergistically, magnifying each of their anti-cancer effects many times. Like magic, her terminal cancer just melted away.

In this truly ground-breaking book, Jane takes us through her remarkable, heart-breaking journey, and the medical discoveries she made on the way. Using herself as a human guinea pig, she worked out the best drugs and supplements to starve her own cancer in an easy-to-follow ‘Metro Map’. She has expanded this route map to show which fuel pipelines you need to block for every type of cancer, so you too can create your own cancer-starving cocktail. Tragically many simple old drugs have been overlooked in the race for the latest patentable ‘game changers’. Is the answer already out there? Jane believes it is. Bit by bit she has pieced the puzzle together, demystified its complexity, and produced a simple protocol.

This book will answer all the burning questions you face when you begin to explore complementary cancer care. Which ‘off-label’ drugs and supplements should you take? Should you try the ketogenic diet? Should you fast? Is fat safe? How much and when should you exercise? Jane explains why each patient needs a personalised approach and, importantly, how to work this out.”

Talk on January 18, 2018 – Cancer and The Art Of Living with Leah Bracknell (London)

https://www.facebook.com/events/156871985066151/

What would you do if you were diagnosed with a terminal disease?

In September 2016, after surviving a sudden life-threatening illness, actress Leah Bracknell heard the shocking words we all dread.

“Sorry. You have stage 4 cancer”

With no option of surgery, ‘palliative’ chemotherapy was all that was offered to her.

Based on her blog somethingbeginningwithc.com – Leah shares her remarkable and inspiring story of learning to live with a terminal illness. Drawing upon her experience as an actor, yoga teacher and shamanic healer, she shines a light on the human spirit’s power and capacity to be extraordinary, even in the darkest of circumstances. Discovering transformation, wonder, hope, joy, possibility, positivity, and beauty along the way.

“I chose to cultivate a relationship with my disease. To ask it: why are you here? And what have you to teach me? I discovered that when I ceased regarding cancer as my enemy and looked beyond the fear, it gave me the opportunity to embark on a profound personal healing journey, emotionally and spiritually that has transformed my whole outlook on life. 

Having cancer has restored a deep appreciation and gratitude for my life. It has been an awakening. Cancer has been my greatest challenge, but also my greatest teacher, one that has rekindled my passion for life. It has taught me that a life well lived is the best medicine, that we can all be the alchemists of our own “healing”, whatever the outcome, and that life is not merely about existing or surviving, but thriving with a capitol T.
Cancer has given me back my life.”

This is an experiential event and you will be able participate in some of the healing practices: meditations, visualisations etc that Leah uses on her journey to assist you with your own.

“Having cancer or any serious illness can be a dark, frightening and lonely road. So, let’s walk it together, standing tall, side by side, hand in hand.”

Leah Bracknell, mother of two, actress, yoga instructor, shamanic healer was diagnosed with stage 4 lung cancer in September 2016, after suffering a near fatal pericardial effusion. 

She has worked in TV and theatre for forty years, from Shakespeare to panto and is best remembered for her role as Zoe Tate in Emmerdale. A yoga instructor for over a decade, she has taught workshops around the country and at the Yoga Show, MBS, Wilderness Festival, and Mind Body Soul Exhibitions and written for Om Yoga Magazine, Yoga Magazine, Spectrum, her teaching has been widely featured in the press, including This Morning, Lorraine, BBC Radio. She has released 2 DVDs Yoga & You and Yoga for Life. In 2010 she underwent an intensive Shamanic practitioner training.

You can read more of Leah’s work on her blog Somethingbeginningwithc.com
Tickets £19 and £14.50 concessions
Booking: Cecil Sharp House
https://uk.patronbase.com/_CecilSharpHouse/Productions/8F/Performances

Recurrence Rollercoaster – #3 The GcMAF route – the Good and the Bad

I’ve had mixed response to my previous post Recurrence Rollercoaster – #2 The GcMAF route with readers posting comments about their experiences with GcMAF, and their opinions on Goleic, Ruggiero and Noakes.

I’m going to keep this as succinct as possible so I can get on with the rest of my saga, so that you can make your own mind up.

The Good

• We got the (theoretical) full doses of Goleic every day – that was one vial per day.  RRP was £400 per vial
• Some people received an additional delivery method of suppositories
• The Goleic injection was administered into the veins feeding the tumours, by guided-ultrasound by a very good radiologist and the creator of Goleic (Prof Ruggiero)
• We were shown on ultrasound, the instantaneous effect an injection of Goleic had on the creation of nitric oxide by the body.   They scanned the spleen to see monitor the activity and increase in blood supply which was caused by the creation of nitric oxide by the Goleic.  An increase in blood supply was a good response for the macrophages.
• We were shown another way of administering Goleic, via a nebulizer.
• As there was no response after my first week, I stayed another week, and managed to negotiate this second week free.
• We all went back with a goody bag of some Goleic
• It was a chance to meet other people who were using GcMAF.  There were some very tragic stories of Stage 4 cancer.
• Prof Ruggiero was charming and professional.  He was a master of the ultrasound.
• Everyone got scans of their bodies via ultrasound.
• Switzerland is very beautiful

The Bad

•  All patients were made to sign a non-disclosure agreement, forbidding us from discussing GcMAF, the clinic etc. including social media and e-mails.  We were told not to discuss our treatments with each other.  All of us found it over-the-top but we signed because we were too afraid not to, afraid that this amazing breakthrough treatment would be withheld from us.  Not even Hallwang Clinic or any other cancer clinic placed such an onerous condition on us.
• What was more ridiculous is that we were not allowed to keep a copy of the NDA – what were they trying to hide?  Yes, I should have insisted, but I felt very much at the mercy of the clinic.
• The same research findings were trotted out over and over again during the lectures given to the patients.  It was a very small sample of patients, understandably so, as it was such a new product.  I began to get the impression that we were there, not to be cured, but as guinea pigs, part of a trial, so that they could increase their sample size and get more proof of whether it worked
• The clinic weren’t interested in the supplements that we were taking.  They had a set list of supplements (Vitamin D, BCAA, MAP, GcMAF yoghurt, and a few others) that they used, and anything else didn’t matter.  This allowed them a get-out clause in the event the Goleic didn’t work: they would claim that our supplements stopped the Goleic from working.
• There were 3 people who were ex-cancer patients who had been cured using GcMAF.  And that was the crux of the issue:  they were using the old form GcMAF, and not Goleic.
• There were a few lectures on how Goleic worked, and a lecture on nutrition. That was the extent of the education.
• The Paleo diet was prescribed.  To give the staff credit, one of the meals was prepared Paleo style and it was very tasty.  There was no interest from the staff in other diets, e.g. the ketogenic diet.  Any attempt to introduce other topics was met with a frosty reception by the staff.
• I may or may not have got shrinkage.  Prof Ruggerio maintains I did, but my own radiologist and surgeon could find no difference.
• It wasn’t a proper cancer clinic.  If you had a medical emergency, you would have to go to the nearest Swiss hospital.  It wasn’t a residential clinic either, so we were responsible for finding our own accommodation, and getting to the clinic.
• At the end of 5 days, I asked for ultrasound measurement and was told I had to wait a full 7 days (i.e. the following Monday) before having another ultrasound.  I was taken aback – it felt like they weren’t interested in my results, and wanted me out just in case it hadn’t worked.  As I’d booked to leave at the weekend, I decided to stay another week just to give Goleic the best chance to work.  This meant cancelling my non-refundable flight.  I was also annoyed because this had not been stated in the website which just said that it was a minimum of one weeks’ treatment, but three weeks was best.  Nowhere did they state that we would only be measured the following week.  Another friend of mine, Claire Grant, got caught out by this, and decided not to stay a second week.
• They weren’t interested in nagalase test results
• They weren’t interested in the VDR test for response to GcMAF
• There were no treatments at the weekend, apart from the yoghurt (or suppositories)

Bear in mind there are many different versions of GcMAF.  Goleic is just one variant.  There are many different manufacturers of GcMAF.

And that there are cancer clinics or integrative doctors who do use GcMAF, but always in conjunction with other treatments (for example the Paracelsus in Switzerland).  My friend, Donna Lockyear, used Goleic, then GcMAF as a monotherapy based on the recommendations of ImmuneBiotech.  She suffered a recurrence.

Finally, I’ll leave you with a review of the clinic and Goleic by Claire Grant, in her outstanding blog:  triplenegative.co.uk:

https://www.triplenegative.co.uk/gcmaf-unfairly-interviewed-or-a-fair-synopsis/

 

 

Recurrence Rollercoaster – #2 The GcMAF route (and why you should always kick the tyres of any cure)

A quick re-cap for newcomers to this blog:  I was diagnosed with breast cancer (Stage 1) and spent approximately 1.5 years doing alternative treatments, but the tumour kept growing so I had a mastectomy.  I woke up from the mastectomy to find my left arm paralysed and numb due to  nerve damage (to the brachial plexus) caused by tractioning of the arm during the mastectomy.  I had to have further surgery to release the nerve and because of that, I had no conventional adjuvant treatment.  Nine months after the mastectomy, I finally regained use of my arm.  Nine months after the mastectomy, the cancer recurred.  This is a summary of the options I was exploring after the recurrence.

I’m going to try to update my blog more often.  I regularly check the other cancer blogs I follow and start getting antsy when I don’t see any recent updates.  I’ve also had readers e-mail me with a polite: “How are you?” which reading between the lines, seem to me to also be asking: “are you still alive?”

It must feel as if I am dragging out the whole recurrence and cancer journey story.  But I find it painful sometimes, relieving what happened and the humps and bumps along the way that have derailed me.  Early on I made a choice to write in retrospect so that I would have the wisdom and perspective of distance to give me objectivity.  But doing so has meant that I’ve lost a lot of the immediacy of the moment and have to rely on medical reports on e-mails.  Fortunately I kept very detailed e-mails.

This post is about my visit to a clinic which used a form of GcMAF called Goleic.  The clinic has since been shut down and I do not think that the company who was running the clinic, ImmuneBiotech, is running any more clinics (thank god).  It’s also a post about smoke-and-mirrors, and needing to kick the tyres of any cancer treatment that purports to be a cure.

“It’s not the end, it’s just the beginning …”

Caption:  Peter Trayhurn and his famous Lost-At-Sea experience.  Video: courtesy of Marcus O’Brien

I first met Peter Trayhurn at the Hallwang clinic in Germany.

I was sitting in the dining room at the clinic, when in strode this incredibly tall man who commandeered himself a place at the table and started chatting confidently to everyone and criticising some cancer treatments he’d been researching.

I asked him who he was, and his reply was:  “Pete … Peter Trayhurn.”

He obviously expected some form of recognition from me, and when I looked blankly at him, he added (with that characteristic confidence that I would come to recognise as one of his traits) before he made a dramatic exit: “read my blog.”

Please pray for my friend, Peter Trayhurn

Now more than ever, my friend, Peter Trayhurn, needs your prayers.

I first met Peter (an Australian) at Hallwang, the German oncology clinic, in 2013.  He went there with Stage 4 Colo-rectal cancer, having been given six months to live by his oncologist in Australia.  His cancer vanished within six weeks’ of treatment, only to rear its head again when he returned to Australia.

Since then, he’s been playing a painful game of whack-a-mole with the cancer.

What’s remarkable is that Peter has outlived most of his doctors’ worse predictions.  He’s outlived most of his friends on cancer forums.  And he’s done so with a very good quality of life.  He’s driven himself all over Germany, flown all over the world in the search for cures, gone scuba diving, lived on an ashram and done yoga.  And been a father and husband.

He’s also the author of a blog:  http://petertrayhurn.blogspot.co.uk/.  It’s a step-by-step account of his cancer journey.  It’s full of infuriating typos and spellos, but it is also full of the latest treatments.  It’s full of his zest of life.  And I can vouch for the fact that the positivity and optimism in his posts is real and authentic, and not a mask.  I think he’s the closest I’ve come to a genuine cancer saint.

A few weeks ago, his condition worsened when he was in Australia.  He was throwing up non-stop and wasn’t absorbing nutrients. I managed to persuade him to Skype me when he was in hospital.  I saw how bad he was.  He was in agony throughout the call despite morphine.

I whispered nervously to him:  “Is this the end?”

He looked into the screen and a small smile lit up his face.

“No, I think it’s just the beginning,” he said.

Please pray for my friend Peter.  Now more than ever, he needs your prayers.  And please also pray for his family.  For his children, who cry every night in their beds.  For his wife.  For his doctors to make the right decisions.  Pray that he pulls through the surgery to help him eat, that his guts heal, that the pain lessens, that he manages to eat, that the cancer vanishes.

Please pray.  Because the world needs more people like Peter to show us how to remain human despite the inhuman trials.   Who can pull smiles out of pain.

****

http://petertrayhurn.blogspot.co.uk/

Recurrence Rollercoaster – #2 Headless chicken

A quick re-cap for newcomers to this blog:  I was diagnosed with breast cancer (Stage 1) and spent approximately 1.5 years doing alternative treatments, but the tumour kept growing so I had a mastectomy.  I woke up from the mastectomy to find my left arm paralysed because of nerve damage (to the brachial plexus) caused by tractioning of the arm during surgery.  I had to have further surgery to release the nerve and because of that, I had no conventional adjuvant treatment.  Nine months after the mastectomy, the cancer recurred.  This is a summary of the options I was exploring after the recurrence.

We all want tidy endings to healing journeys.

We’re programmed through myths and story-telling and Hollywood Blockbusters, to expect tidy endings, happily-ever-after fairy-tales.

With the recurrence, it was as if the story I was writing for my healing wasn’t coming through. I know loads of people who have done the surgery- chemo-radiotherapy route and the cancer vanishes and they live happily ever after, in remission for the rest of their lives.

But I was on a different story track.

Writing this with the luxury of retrospect, I was running around like a headless chicken trying to find ways to get rid of the cancer.

Happy 2017 and a video: Natasha Laing – from Stage 4 breast cancer to remission

Happy 2017.  I am still alive!

To all of you who are struggling in your journeys with cancer, I want to share this interview of a friend of mine, Natasha Laing.

Natasha had Stage 4 breast cancer with mets to the lungs and bones which deteriorated until she was placed in a hospice.

Blogs I follow

These are the blogs I currently follow:

http://www.cancertreatmentsresearch.com/ – amazing site set up by a scientist with a PhD in Physics – his wife and mother got cancer.  Well-researched, current and traditional “cures” and well-written, de-mystifying scientific jargon into plain English.  Good for information on Salinomycin [the new wonder cure].

http://www.triplenegative.co.uk/blog/ – I like Claire’s blog because she’s open about her life, her treatments, her strength, her optimism.  Good, clear explanations about the use of immunotherapies and cutting-edge treatments for breast cancer.  Triple-negative breast cancer is one of the toughest to treat. Claire is proof it is treatable.  Update 24/9/2017:  Claire Grant passed away in September 2017.

http://petertrayhurn.blogspot.co.uk/ – Peter Trayhurn is a friend of mine – I met him at Hallwang Clinic.  Peter was diagnosed with Stage 4 colo-rectal cancer about 4 years ago.  Well, he’s still alive and enjoying a good quality of life.  His blog isn’t the easiest to read or follow.  It tends to be a description of what he’s doing, but his optimism, faith and positiveness are infectious.  Give this man a huge round of applause for his intelligence and courage to follow his own wisdom and heart!  Update 2017:  Peter Trayhurn passed away early 2017.

http://thinskin.org/ – This is not a cancer blog.  Nora Logan is a liver transplant recipient. She hopes that this blog might provide others with some solace in their darkest moments and the knowledge that they’re really not alone and there will be light at the end of the tunnel.  I like her blog for her honesty and humour and great writing.

https://adventuresinlivingterminallyoptimistic.com/ – another Stage 4 colo-rectal patient.  Written by an oncology researcher (oh, the irony of it all!) who was diagnosed with Stage 4 CRC.  Good explanations of immunotherapies for colo-rectal cancer which are applicable to other types of cancer.  Good if you want systematic explanations and research and studies.