Our Facebook Group Head & Neck Cancer Support

Maureen Jansen's Posts (136)

After intense treatment for head and neck cancer Sean Woods packed up his old life and went on the road in a gypsy caravan selling his tie dyed products, mostly t-shirts. This means he can meet up with other members in clinics and meetings and gyspy fairs around the country. 

Here he is in Palmerston North with Gypzee Kerry.


And in Blenheim with Olwen Williams.

And with Liz Gray in Invercargill

Here's a tapestry he made for the fairs.


Be sure to visit Sean's stall when the Gypsy Fairs come to town.


We hope to get Sean's cancer story - and the tale about his remarkable change in life direction - when he takes a break for the winter and has time to write it. 

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New Zealand nurses are currently agitating for a pay rise with many maintaining the general public is only partly aware of how important their role is.  Lead story this week then is about how nurses can help head and neck survivors post-surgery.

Second story is a bit more technical – about identifying types of cancer in order to provide best treatment.


# The “are you sure you would like to uninstall” is basically a computer program pleading for its life.

# Every corpse on Mount Everest was once an extremely motivated person.

# The immortal vampires from Twilight could have done anything with their time, but they chose to go to high school for hundreds of years.


Helping Survivors of Head and Neck Cancer Face the Future

(U.S.) Head and neck cancer treatments can cause serious damage to an individual’s appearance and self-image. Nurses need to be prepared to provide survivors with both medical and emotional support in dealing with the aftereffects.

According to the American Cancer Society, an estimated 436,060 survivors of head and neck cancer are living today in the United States, and that number is growing.1 Survivors often cannot escape the effects of their disease because of the prominent location of their cancers. Their recovery postsurgery remains very visible to the outside world.

When patients are told that they might lose sight in an eye or lose a section of jaw due to head or neck cancer, multidisciplinary teams play a key role.

Compassionate specialists and healthcare providers ready to address questions and needs are crucial to enabling patients to navigate the road ahead. Nurses are vital members of this multidisciplinary care team.

Disfigurement is a significant concern for patients with head and neck cancer, according to Colleen O’Leary, MSN, RN, AOCNS. “Although there are other disfiguring surgeries, such as mastectomy or colostomy, often those can be hidden with prosthesis or clothing,” she says, “but when it’s your face or neck, you can’t hide it.”

Nurses help these survivors learn how to come to terms with their new normal. Through her dual associate director roles at Ohio State University Wexner Medical Center in Columbus, O’Leary educates nurses about incorporating compassion, as well as evidence-based practice, into the work of oncology nursing.

Before she became a nurse, O’Leary was a social worker. For 26 years, she incorporated lessons she learned in social work into her oncology nursing practice: How to view and treat the whole person and to try to understand patients’ family, work, and social environments as part of a method of care.

“That ability to talk to patients, to see them for who they are and not their disease, has been invaluable,” O’Leary says. When explaining to nurses how to support patients with head and neck cancer, O’Leary stresses a key message: “Not judging someone for their lifestyle is critical.”

Nurses must retain their objectivity and not play the blame game. “It is important to treat everyone with compassion and respect,” O’Leary says. “Know that this diagnosis has changed them inside and out, and support them through that.”

Head and neck cancer survivors are often not prepared for how they will look immediately after surgery. The changes to their body can be overwhelming, and they may need a lot of support.

They should be able to rely on nurses as a good source of knowledge, so O’Leary provides relevant clinical education to her staff to ensure that survivors are receiving competent care.

Full story

New research uses genomics to identify squamous cancer cells

(U.S.) Researchers at the National Institutes of Health (NIH) have used genomics to set apart squamous cancer cells (SCCs) from other cancers. This could improve treatments for head and neck cancers

By repurposing the use of pre-gathered data of SCCs from the head, neck, lung, esophagus, cervix and bladder, the researchers were able to define characteristics of SCCs which linked to tobacco use and the human papillomavirus (HPV) infection.

The study showed that cancers affected these areas had similar genomic features that set them apart from other types of cancers, paving the way for new avenues of research.

Current treatments for head and neck related cancers can often cause austere problems with functionality of those areas. According to the NCI, Tobacco use is one of the main culprits for cancers in the head and neck. Similarly, certain types of HPV – such as HPV type 16 – have also been found to contribute towards head and neck cancers.

In recent years, the number of HPV-related cancer incidents has grown dramatically.

However, the discovery outlined in the paper, will help scientists and researchers to develop suitable approaches to tackle these specific cancer types.

Full story

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Become a member, please

Around the corner on May 7th is our AGM. We hold it in Auckland where we started, but it is an annual general meeting for all our members throughout New Zealand. 

We'll do our best to live stream it but we need non-Auckland members to vote by proxy. We'll send you a form. 

As we are an incorporated society, we have certain rules to adhere to. One is that every old member has to enrol again. And you have to be registered to vote at our AGM. 

Those who have registered this year should be all right but could the rest of you re-enrol by clicking on the link below. It takes two seconds to fill in the form and goes straight to our top secret database. 


At this stage only New Zealanders are eligible to vote as we get our status and some of our funds from the New Zealand government. 

This year we hope to add a couple more members to our committee, change the status of some of our committee members and change some lines in our constitution. The most important change will be to get the word "Survivors" out of our name. Why? We feel it is not inclusive enough and that it makes the name too long for our branding as a non-profit. Our new name would be "Head and Neck Cancer Support Network". 

If you have never been an official member, now is the time to join. We will keep your information confidential and we will have your postal address etc if we want to send you material. And it's free!


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Meetings Update

Meetings are taking place all around New Zealand. We will update you on the Palmerston North, Nelson and Invercargill meetings in due course. Meanwhile, here is a summary of two recent NZ meetings. 

Christchurch Head and Neck Living Well Group 5th April Meeting

Swallowing and Voice Issues

Last Thursday Christchurch held its 6 weekly meeting with a large gathering of 15 patients and caregivers in attendance. An interesting and informative discussion led by Lucy Grieg Speech Language Therapist. The evening began with a power point presentation and discussion on how we swallow. This was followed by information on the effects Radiation and Chemotherapy have on swallowing as well as long term side effects. Physiological changes and symptoms. The topic then switched to how we speak and the effects of Radiation and Chemotherapy on speech and voice.

A relaxed evening where we were free to ask questions and share stories. Our group consisted of newly diagnosed patients, patients in the first year of recovery and beyond. If a patient finds that they start to experience speech or swallowing issues the key message is get onto to it early. Book an appointment with a Speech and Language therapist for help. Talk to your GP or ENT dept.

Next meeting - 17th May on the subject of HPV. All welcome.

Cosette Calder

Auckland Support Group Evening Meeting 3rd April

Discussion and Support

We were delighted to see 7 people turn up for our first ever evening meeting last Tuesday. Held in the Domain Lodge hall, it turned out to be a very supportive event in which each attendee was able to tell her story in detail with plenty of discussion in between. 

Next meeting - Monday 7th May - a talk by radiation oncologist, Giuseppe Sasso and AGM. All welcome

Maureen Jansen

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Painted rocks: Friendly Friday

Want to get your children or grandchildren away from their screens and out into the parks and bush tracks? The painted rock craze is for you.


What it invloves is painting rocks, tagging them with your name or location, photographing them and then hiding them in nooks and crannies in parks and walkways. People find them, photograph them and hide them somewhere else. It's usually coordinated on Facebook. Rotorua rocks have been found in San Francisco so this craze is worldwide. 

Adults are into it too and in the US hospitals encourage the activity - hiding rocks in the hospital environs. 



It's creative. A large pebble can hold a satisfying image and now there are special painting pens that make it easier to draw sophisticated pictures on the rocks. Cheapest is the house paint sample and a paintbrush of course. You spray the roacks with a varnish to keep the images watertight. 

We have our own rocks! Not sure what to do with them yet but they look and feel really good. A concrete example of our network. Best of all, they are so therapeutic to work on. 

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One of the first thoughts that ran through my head when I got cancer was that it was my fault. I’d been too stressed for too long and now my body had failed me. I’d let my immune system get too weak.

I now think that is wrong, wrong, wrong. Cancer is caused by random cell mutations that take place over decades. There are risk factors, yes, but there’s also a lot of plain bad luck. The immune system can’t protect you from most cancers because cancer evades the normal defences of the body.

Yes, the new immunotherapy treatments like Keytruda enhance the immune system to kill cancer cells but that doesn’t involve strengthening the immune system as such but engineering it so it ignores the cancer cells’ false signals. Cancer says to the killer T cells in the immune system, “Don’t eat me, I’m harmless.” Immunotherapy turns that switch off - for some cancers.

Ironically, a boosted immune system could be dangerous because it might start to attack the body’s healthy cells as in autoimmune diseases. And the immune system is so complex that it’s a myth that you can take a supplement and all will be well.

I know that if you have chemotherapy, the white blood cell count can get very low - temporarily - and you can be susceptible to infection, even from bugs in your own body. It’s ironic that we need to lower our immune system to fight cancer when in some early stages, in spite what I said above, the T-cells can kill certain cancer cells. However the effect is not long lasting and chemotherapies like Cisplatin have been effective in treating cancer.

What is the immune system? It's complicated. People can always comment and put me right.

Here is a dictionary definition:  the organs and processes of the body that provide resistance to infection and toxins. Organs include the thymus, bone marrow, and lymph nodes.

And a handy diagram. 

The latest NZ Listener (April 7-13) has an article on “Inflammation, the Silent Killer” . Inflammation is part of the immune response so this is related to my topic but I found it a bit shallow and credulous. It does seem, though, that science is looking at ways in which inflammation can cause cancer and how we can offset chronic inflammation by diet and lifestyle.

An interesting side story is about Timaru-based GP Dr Tracy Chandler whose advice seems sound up to a point to my sceptical self.

But no processed food! I’d starve. No alcohol! No skin off my nose but for others …

The article doesn’t make it clear but she mentions the 80/20 rule. Stick to this advice 80% of the time. 

The story of cancer and the immune system still has many chapters to go.

A good link



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With the increasing number and variations of cancer treatments (and the number of identifiable cancers)  finding the right one can be a challenge, but more work is now underway to help ensure a correct fit – as the lead story explains.

And while head and neck cancers are often blamed on smoking, alcohol or HPV infection some countries have the added risk of  chewing tobacco to contend with. Tripura (second story) is in north east India.

# Robots can do anything we set their mind to  
# One day aliens will find out that we have been choosing our own species as Miss Universe and they will be very upset.
# There are so many warnings now it's hard to differentiate which ones are actually important and which ones are just inserted by a lawyer for liability protection.


Clinical trials target head, neck cancer treatments
(U.S.) A Case Western Reserve University research team will initiate a series of clinical trials focusing on identifying potential head and neck cancer treatments.

Officials said the work would involve analyzing computerized images of tissue samples for patterns which could become predictors for determining relative risk for recurrence.

“Right now, it’s one-size-fits-all therapy for patients with HPV head and neck cancers,” said Dr. Anant Madabhushi, the primary investigator and founding director of the CCIPD at the Case School of Engineering.

“There are currently very few validated biomarkers and approaches that are accurate enough to be able to identify which of these cancers are more aggressive or which ones are less aggressive. That has limited the ability of clinicians to even hold clinical trials to find out if they can de-escalate therapy for some of these patients—or who needs more aggressive therapy.”

The National Cancer Institute (NCI) recently awarded a $3.15 million, five-year academic-industry partnership grant to the Case Western Reserve University team to pursue the research and build toward establishing the clinical trials.

Officials said initial results on almost 400 oropharyngeal cancer patients suggests the technology is independently prognostic of disease progression, meaning it could stand alone in helping clinicians figure out how aggressive the disease is and make a more informed decision on how aggressively to treat the cancer.

Full story

Tripura: 2,500 New Cancer Patients Every Year, 40 Per Cent Of Total Are Women, Says Health Minister
(India) Tripura Health Minister Sudip Roy Burman has urged Tripura women to change their lifestyle in order to prevent cancer. He told the people that around 2,500 new cancer patients are diagnosed every year in Tripura and 40 per cent of the total cancer affected patients in the state are women now. 

"It is a matter of concern for us that the women of the state are increasingly being affected by cancer either by chewing tobacco or due to smoking. I think change of lifestyle can help them to remain free from cancer," Burman said. 

Tripura tops in the North East in tobacco consumption in all its forms, the minister said quoting a report. Burman said the government has planned to modernise the Regional Cancer Hospital there and also set up another cancer hospital at Ambassa in Dhalai district. 

He said 1,458 cancer patients died in 2016 in the state while 3,786 patients died of cancer between 2014-2016. Among all cancer patients in the state, 40 per cent suffer from head and neck cancer mostly caused by chewable tobacco, he said. 

Full story

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Look at the horizon: Friendly Friday


Someone gave me a tip a few years ago. She was talking to a group of caregivers whose partners had dementia. Get outside each day and look at the horizon, she said. 

I think it's good advice because the horizon lifts you up above the troubles or petty issues of the moment and makes you feel part of the cosmos. 

I'm surrounded by trees in my little back unit. If I look out my laundry window I can see as far as the spine of the peninsula where the cars crawl up Whangaparaoa Road. But even that view is being blocked by the evergrowing trees. 

A ten minute walk or five minute drive and I can see the sea. Always worth it to look at the horizon. 

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Assume people will crash at some point and provide support. That’s what I think health care workers should do for newly diagnosed head and neck cancer patients. For a lot of the patients who end up at the multidisciplinary meeting, their lives will be changed forever. At the very least they are in for tough treatment.

A recent discussion on our Facebook group showed that depression and anxiety are quite common in the head and neck cancer community. Not everyone who suffers from HNC will have these issues by any means but just about everyone will experience at least short term distress.

The difference between anxiety and depression? Complicated but I think of anxiety as a longstanding feeling of stress and fear, and depression as persistent low mood and negative feelings. It’s when they set in long term that they’re a problem and I guess many of us have suffered from both.

My own experience of depression happened long ago after successful treatment for an advanced and life-threatening cancer. The rollercoaster of emotions and the attempt to be staunch to protect my family meant that something in me broke down after treatment was over and I was meant to get on with normal life. Stoicism has let me down several times since then and I have finally learnt that you need to be upfront and honest about how you feel - and ask for help early.

There are so many variables that need to be factored in here. What are the other circumstances in a person’s life? Cancer doesn’t happen in a vacuum. Is the person alone or caring for someone else? To what extent has life experience contributed to a certain resilience or philosophical acceptance of suffering and mortality? How well has the medical system dealt with the cancer? There can be a loss of trust in the system if a person was misdiagnosed for a long time or suffered an adverse event in hospital and was not sufficiently debriefed afterwards.

How can the system preempt anxiety and depression? Make sure the patient is as fully informed as it suits them; make sure they have a written record of their condition and some links to good information. Give them a treatment and follow-up plan. Make them feel the system cares about them. The fear of recurrence is a realistic fear and it takes time for people to learn to deal with it and not become hypervigilant. I’d like to see the awful phrase “wrap-around services” applied to head and neck cancer people. Maybe there is a psychologist available for patients now but there wasn’t during my last treatment in 2014. Psychologists who are experienced in cancer can make all the difference.

When you have an appointment with a Cancer Society psychologist, you fill in a sort of “state of mind” questionnaire. It takes about 5 - 10 minutes and gives the practitioner a snapshot of how you’re feeling. I think such a survey would be useful before all follow up appointments. Then the doctor doing the checkup can look at the patient holistically rather than just looking at the physical signs. I don’t think it would be a “time suck”, a glorious term I first came across yesterday.

In our discussions, we have come up with a lengthy list of solutions. Well, not absolute solutions, but things that can help us a lot. I find that we can manage our mental health issues if we admit that they are likely to be there. Watch for signs of a lowering mood or increasing anxiety and find your own tips, tricks and techniques to keep long term distress at bay. This cancer is usually treatable, more often curable than not and can often be managed if not 100% curable. We need to enjoy this beautiful world.


Top techniques in order of merit?

  • See a psychologist, counsellor or psychiatrist
  • Take antidepressants or anti-anxiety meds
  • Learn mindfulness, yoga, meditation, Tai Chi
  • Join a support group on the ground or online
  • Keep a diary, document your experience
  • Walking and other exercise
  • Appreciating nature - maybe with photography added in
  • Make sure you are with with other people regularly however hard it is and even if it’s online or just going to the shops or a cafe
  • Be creative - write, paint, bake, make things
  • Pinc and Steel offers rehabilitative physiotherapy to men and women recovering from any cancer
  • Get a pet - dogs are good
  • Help others with HNC - believe me, it works
  • Read, watch movies, listen to music - all good healthy distraction techniques
  • Find a new interest - something you can do and which you will enjoy

Finally, I remember hearing a psychologist say that “acceptant” (yes, it is a word) coping was better than denial in the long run.

Please comment.

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Ode to Autumn: Friendly Friday

Three glorious months of autumn before we sink into winter. Much prefer autumn and spring to the highs and lows of summer and winter. 

Autumn is the season of figs, feijoas and pumpkins, mellow light and gentle temperatures. 

Why is this relevant? Because mindfulness, being in the moment, is a good antidote for depression in people affected by cancer. We can be mindful about the beauties of autumn - or spring if you are in the Northern Hemisphere. 

 I recommend Thich Nhat Hanh's little book, The Art of Mindfulness for its practical wisdom. 


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I’m a very sceptical person which often infuriates those who look at health care more holistically. If something sounds too good to be true, it probably is, my mind tells me.

Always felt dubious about the manuka honey craze which has shifted the price of a jar of this delicious, earthy honey from a few dollars to over $20 a jar - and $120 for the pure product.  

(I know it’s fantastic for the economy of the North though, so feel guilty about my scepticism.)

This topic came up on our Facebook group when someone linked to Itzhak Brook MD’s much respected blog about head and neck cancer. Written by a laryngectomee, it contains heaps of useful info for HNC patients in general.

Here is the discussion point:


It’s a reference to a mega-analysis of research into honey (regular honey, not manuka)  for radiation-induced oral mucositis, the agonising inflammation of the mucous membranes in the mouth during radiotherapy.

“But what about the teeth?” I thought. Honey is mostly sugar so wouldn’t it increase the risk of tooth decay in the radiated teeth?  My little brother’s baby teeth rotted back in the 50s because my mother put honey on his dummy.

And the study Dr Brook referenced wasn’t enough for me. A lot of these studies have vague results and say “more evidence required”.

What I found out in this investigation is that manuka honey is probably effective for healing wounds on the body but is no good for wounds in the mouth. While it has interesting antibacterial qualities, there is one bug in the mouth, the one that causes most dental decay, that manuka honey can’t defeat.

Patients undergoing radiation treatment found a manuka honey mouthwash to be painful and ineffective in two of the studies I skimmed, one by a student at the Otago Dental School. A Saudi Arabian study, however, found it effective for children with oral mucositis.

I’ll share here what I discovered about the healing properties of manuka honey and then the trials using the honey with cancer patients going through treatment. I’ve emailed a scientist, an oral medicine specialist and the Otago Dental School but while I’m waiting for their replies, if any, I’ll rely on Dr Google.

In the beginning

The late Professor Peter Molan of Waikato University in New Zealand was the first to report the unusual activity of manuka honey, and began testing its action against a wide range of different bacterial species in the mid 1980s. Eventually he had to grade the honey to make sure people were getting the real deal.

He said that manuka honey usually has a Unique Manuka Factor (UMF) rating on the package which means it has been tested for antibacterial activity; the higher the UMF the greater the antibacterial effects.

All honey has antibacterial qualities and it has been used to treat wounds since the days of the ancient Egyptians. When applied to a wound, honey gives off the antiseptic peroxide, same chemical you find in the useful little tubes of Crystaderm. And remember the days when we peroxided our hair?

Here’s the scientific explanation. Honey contains an enzyme called glucose oxidase, which breaks down glucose sugars and generates hydrogen peroxide, a sort of natural bleaching agent. ... As a result, hydrogen peroxide is released slowly and acts as an antibacterial agent.

Special qualities of manuka honey

Manuka honey goes above and beyond your ordinary honeys though. It has an effect called Non Peroxide Activity.  A high NPA rating means super healing power. However, an article in the Huffington Post expresses some doubt about the superiority of manuka product while our own Consumer magazine damped down expectations beyond wound healing.

Manuka honey can contain an unusual type of antibacterial activity at levels not found in other honeys. This antibacterial activity has only been demonstrated in medical-grade honey used as a topical antiseptic. There’s no hard evidence the honey has any antibacterial effect when eaten. (Consumer)

Manuka honey for wounds

Sounds as if clinical grade manuka honey is good for abscesses and other wounds but needs to be applied in a medical setting.



Manuka honey for oral mucositis

I found a couple of reports giving poor results. 

Oral mucositis is an unavoidable side effect of radiation therapy to the head and neck which can compromise patient health and quality of life. This study investigates the effect of manuka honey on the extent of oral mucositis in head and neck patients in New Zealand. A total of 28 patients were recruited; 10 patients received standard care and 18 patients were given additional manuka honey. Honey was used three times a day, assessment included: extent of oral mucositis using a multi-site mucositis scoring system, weight and quality of life. The first six patients randomized to the honey arm, used undiluted honey and pulled out in the first week because of extreme nausea, vomiting and stinging sensations in the mouth. The next 12 honey patients used a honey mouthwash (diluted 1:3). Six of these patients completed the trial and four more completed the first 4 weeks of the trial. Eight control patients completed the trial. In contrast to previous studies in Malaysia, Egypt, Iran and India undiluted honey was not tolerated. Honey mouthwash did not affect the extent of oral mucositis.

Despite promising earlier reports, manuka honey was not tolerated well by our patients and, even when used as directed, did not have a significant impact on the severity of ROM (radiation-induced oral mucositis).


The following report seems to be the source of the above. It's an Otago Dental School study (for a Master's thesis).

The addition of manuka honey did not show any benefit and caused a large amount of discomfort with respect to taste and stinging.
The trial did not yield statistically significant results due to the small sample size and confounding factors but it did provide useful information about the tolerability of manuka honey in head and neck patients. The reports from trial patients can be used in future trials that involve honey application. Further research into ways to make manuka honey more tolerable to patients and improve patient compliance is warranted.


An International Journal of Dentistry explanation of why this honey might not be good for gum disease. 

Medical-grade manuka honey (i.e., NPA > 20) is antimicrobial towards representative oral bacteria generally, and the gram-negative anaerobes associated with gingivitis are particularly sensitive. However, the relative resistance of cariogenic S. mutans in association with the high concentrations of fermentable carbohydrates in honey and the direct demineralisation of oral hard tissues caused by the low pH of honey mitigate against application as a subgingival sustained-release adjunct in the treatment of periodontal disease.

https://www.hindawi.com/journals/ijd/2017/9874535/ Internationa Joural of Densitisty

Here’s an extract from a pro-natural products webiste.

Honey is a natural antiobiotic, thanks to the presence of hydrogen peroxide. Even the ancient Egyptians slathered it on as a salve.

What sets manuka honey apart is its "non-peroxide activity" due to high levels of certain antibacterial compounds, among them methylglyoxal, or MGO, and leptosperin, which make it way more potent than what's in the average honey bear.

Studies have shown manuka honey not only attacks and kills germs, but prevents the formation of antibiotic-resistant superbugs, including Staphylococcus aureus, or MRSA.

Manuka honey has proven most effective in treating infected wounds, burns, eczema and other skin problems.

Here is an article from the honey business. 



Doesn't look as if the study referenced by Dr Brooks stands up to closer scrutiny. Not for use in the mouth. However, as they say in just about every Cochrane report, "More research required". 

I'd love to think of our lovely honey from the iconic manuka bush as a panacea. What a romantic, natural, heartwarmng thing that would be. How exotic for people from other countries. Behind a lot of natural health product fads though (Remember the green-lipped mussel?) there is often limited evidence.

And for manuka honey, you can't just take it from the nearest hive. It has to go through testing to make sure it is of clinical grade.

It sounds like a boon in a world where bacteria are becoming resistent to antibiotics - yes - but one for the scientists. 



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The milk of human kindness


After talking about the Health and Disability Advocacy Service at the Auckland Meeting on 5 March, we discussed acts of human kindness that we had experienced while being treated for head and neck cancer. 

Here they are, listed below:

  • It was heaven to have my hair washed after surgery.
  • The kind surgeon who looked at my twisted tubes and said I'd feel better on Day 8.
  • One nurse who would just arrange my pillows in a way that alleviated some of the pain so I could sleep.
  • The nurse who tucked me in and said goodnight.
  • Having help charging my iPad.
  • The Cancer Society Liaison Nurse who was my lifeline when I was diagnosed with a recurrence.
  • Regular phone calls to keep in touch from the Cancer Support Nurse.
  • The SLT who kept encouraging me and who seemed to be the only one who understood the psychological impact.
  • Nurse making jokes while debriding my tongue flap.
  • Random visit from Hospice nurse to give me a hug.
  • When I had a fever, a kind nurse came in and gave me cool cloth.

I hope that we as patients and carers can give that kindness back when health care workers are stressed and exhausted!






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Anne's Story, Part 1, Diagnosis and MDM

Anne Howe is a much loved member of our Facebook group who lives in Dannevirke and gets her treatment in Palmerston North and at Hutt Hospital. Because her SCC tumour first looked like an abcess (pictured below) on her nose, Anne had a struggle to get a diagnosis. She hopes her story might help others. 


My cancer Journey began in January 2017 although at that time I wasn’t aware of it.

What I did know was that I had my old friend (not!) hayfever back and despite taking medication I was continually sneezing. It became so bad the end of my nose became red and sore almost like a graze. I changed my medication but by this time a tender lump had started to develop.

By now it was late January and I’d been given antibiotics for a nasal infection. I was to go back to the GP in a week if it was no better.

On the morning of the 8th Feb I woke up and felt fine. Made a coffee for Todd (my son) and I. Half way through my coffee I started to feel hot. Then I became very hot to the point I felt I was going to pass out. The room started spinning and I felt terrible. Todd called an ambulance. They were here for ages during which time I started to feel better but they were insistent that I should go to hospital.

I was able to walk to the ambulance where I was hooked up to a heart machine with checks being done all the way over and once again when I got over there. Had bloods, heart, urine all checked and nothing showing except I still had high white cells from the infection in my nose.

It was discussed whether my abscess should be lanced, or my antibiotics changed. They decided to not give me more antibiotics but sent me home as they had no concerns. At this point I will say I was not seen by any doctor but a very caring nurse. He tried to get an ENT doctor to come and look at my nose but they didn’t think it necessary. Today was also the day I was supposed to go back to GP but had to cancel. I had two more antibiotics and by now we were at the end of Feb.

Each time on my last two visits, my GP had taken photos and said she was concerned it may be cancer. By now it was the 22nd of February and the GP had arranged for me to see a locum on Friday with a view to going on IV antibiotics if my nose was no better. On Friday, the locum took one look at my nose and refused to do anything more, asking my permission to ring the ENT in Palmerston North. She wanted them to see me immediately. They were unable to do this as there was no available space but I was to be over first thing Monday morning.

She then explained to me that she thought I had a basal cell carcinoma and said if you are going to get cancer that is the good one to get.

Oh, if only … By this time I was really alarmed.

Monday 27th February I went To ENT department where I had biopsies taken from inside my mouth but up near the nose. I was then sent for a scan of my mouth and nose area and back to ENT where I had more biopsies taken.

By now my mouth was so swollen I could not get my dentures back in and have never been able to wear then since.

I was given painkillers, told to go home and to expect an appointment by Thursday for a CT scan. I was to be back at the hospital on Friday for a MDM to meet with a team of doctors who would all discuss my case. I could expect to be there for up to three hours and was told to definitely bring a support person with me.

By now I was feeling super alarmed and very nervous

Multidisciplinary Meeting

I had my CT scan on the 28th Feb and my MDM on the 3rd March

I went to Palmerston North with my daughter for our big meeting. Had to wait quite a while and then saw Dr Kumar who had done my biopsy on Monday.

He wanted to confirm that I definitely had cancer but not a basal cell carcinoma as they thought. What I had was a squamous cell cancer which can spread. He didn’t want me to be told in the MDM.

Then I had to wait to see the team of about 15 doctors. They looked at my growth, asked me questions and then I was sent out again.

They then had a conference about each patient, after which I was taken to another room. There I was seen by Professor Swee Tan and his team. He explained that it was a very big growth. It had not spread though which is good. I would have a total of four surgeries, first one to remove the growth and the others to rebuild my upper jaw, face and nose. I was also to have to have radiation which had to happen within months. Surgery would happen over a six month timeframe.

So eat your hearts out I was getting a nose job and a face lift for free. I could expect the surgery to happen by the end of March.

I was sure I had seen a documentary on Professor Tan and if I was correct then I felt that I was in good hands and said so to my daughter. I Googled when I got home and yes I was correct in my assumption which made me feel more comfortable and safe in the knowledge that I had the top surgeon.

Deep down I was still petrified.

Factoid about Anne: she has two daughters & two sons, eight granddaughters & eight grandsons, one great granddaughter & one greatgrandson. She is in her mid-sixties.


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Big thanks to Waitemata District Health Board (my local) for encouraging our group and making this video about our network. Special thanks to Dr David Grayson, Jarrard O'Brien, a health anthropologist, and Baz the friendly filmmaker. 

If you go to the bottom of the front story, you will see a line of thumbnails. Scroll along that to see two women sitting at a laptop. That is us: Diana, I and later in the video, David Grayson. 

The pic above is a still from the video.


Next in the series will be a video showing Diana's story and one showing mine.

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 How many members do we have. 300? That’s our Facebook group membership. We have about 150 members on our website, many of whom overlap with the former. From 0 to about 300 in under two years is mindblowing to us but even better is the way we are linked to overseas groups.

The purpose of this blog is to inform you about the other groups so that you can avail yourselves of them too if we can’t answer your questions.

Beyond Five

This is an information service led by a team of dedicated doctors in Sydney, Australia. We work closely with Beyond Five whose name comes from the fact that survivorship beyond five years is often difficult for us with the long term effects we suffer. They don’t provide support but list all the support groups in Australia and New Zealand. (We need to update that list) Their big contribution to the cause is their wonderful 3D animations which make the disease so much easier to understand in a matter of fact, unalarming way.

They have also compile a comprehensive stock of patient stores. Whatever type of HNC you have, you are likely to find a patient story that at least partly overlaps with yours.


Mayo Clinic Connect

This is a service for all people with health issues for which they need support. There’s a new head and neck cancer group - still small - and on which I am a mentor. What impresses me about Mayo Clinic Connect is its warm and supportive culture. It is very well moderated and supported by team leaders.

Americans with cancer or any difficult disease might find themselves drawn to attend the Mayo Clinic as patients. Once you join Mayo Clinic Connect , you find you can support anyone with any disease because of the way the different disease groups can be linked.

Dr David Grayson from Waitemata has introduced us the the Mayo Clinic social media guys, They live their aims and values: patient care, research and education


Oral Cancer Foundation

 This wonderful organisation is over 20 years old now and for Tammy and me it was our go to place for information and support. This is a huge organisation now working with researchers on the CAR-T cell therapy. Their forum is excellent - very well moderated but now up against the groups that are on Facebook. Many thanks to Brian Hill, a Vietnam vet who contracted HPV throat cancer 20 years ago and Christine Brader who currently runs the forum.


The Swallows

Our buddies in the UK. Chris Curtis started this now very large group which runs an annual conference and publishes patient stories books around the world. Chris has turned his own serious head and neck cancer treatment into a spur to help others in the UK and globally. Chris makes things happen and is a world head and neck cancer ambassador.

Head and Neck Cancer Survivors (closed Facebook Group, US)



 Mike Greco's excellent Facebook group has 3000 members and hence a lot of shared experience and information. Mike is a well organised moderator who limits people to posts about head and neck cancer alone, fair enough for such a big group. Mike's epic rants about aspects of the disease are classics. Especially useful is his advice about how to prepare for chemoradiation, a long post I have shared on our page. A good place to go if you are from the US and find the NZ health system mystifying. And Mike's page has prayers which we have discouraged form our secular NZ group. 

More Australian Groups

Going back to Australia (Yes!), Head and Neck Cancer Support Australia is run by Marty Doyle, helped by Julie McCrossin and they are the ones who have included us in the patient books (started by Chris Curtis) with an updated version coming out later this year. I must admit, I’m a bit confused about the interlinked groups in Australia. Suffice to say, they are awesome. Marty runs a group in Brisbane and Julie is a potent force on social media as a spokesperson for the ANZ group Targeting Cancer and for Beyond Five.

Sorry if I have missed anyone out (I have). This is just the beginning.

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Our stories are precious: Friendly Friday

I've always enjoyed reading the stories of other patients. There's the basic human interest - it's pretty dramatic having treatment for a nasty cancer like this - and there are the aha moments when you realise the writer has felt exactly what you felt. You feel connected; less alone. The stories are informative - maybe showing tips, tricks and ways to cope. They can be inspirational. They're always emotional; they arouse our feelings of empathy and shared humanity. 

Medical folk want our stories now because the patient experience is helpful for them as they design more patient-centred hospitals. 

But one of the greatest benefits in my mind is the therapeutic value to the patient. I like this line from the Mayo Clinic article below: 

Sharing stories has valuable health benefits for readers or listeners, and narrators alike. Be it through their own experiences or those of loved ones, patients and caregivers are in a unique position – by sharing their stories they are able to create a comprehensive narrative out of often chaotic journeys, and unburden the overwhelming feeling of isolation. For readers, learning about hard-won experiences not only informs, but offers hope and a sense of connection.


How to tell a story? Any way will do; however the spirit moves you. One pattern might be the following:

  • Where I am right now
  • Looking back, how it all started. Getting a diagnosis
  • My treatment 
  • My recovery from treatment and what I have learned; how I would sum up my experience. 

You need to interweave details and feelings as you go through. 

Another way is to start with something dramatic like the moment of diagnosis ....

If you have received a palliative care only diagnosis and your story doesn't fit this pattern, that is okay too. Your story can urge us to action to help you and other HNC patients who need more treatment options. 

If you don't have time to draft it, don't worry. Our editorial team can help you. You can make it as long or short as you like but if it is very long we might have to publish in instalments and if very short we might ask for more details.

The audience will be readers of this blog on this website and in little booklets or on the wall on World Head and Neck Cancer Day, July 27. It's always your choice and with your permission. 

The photograph is of Lake Wakitipu taken recently by Liz Gray with her new Samsung phone. Stunning. 

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Pet scans: what, when, how and why


What they are
I know a PET stands for positron emission tomography. A PET scan is given post treatment to some patients but in my 11 years of experiencing this disease on and off, those three letters, PET, have never entered my realm of treatment and testing. I could tell you about CT scans, punch biopsies and fine needle aspiration under ultrasound but not the PET test.

This is why some of us were mystified when PET was recently mentioned by several members on our closed Facebook group. What's a PET? asked one tongue cancer patient at our last meeting. 

One of the attendees who is a reitred nurse explained that you were injected with a radioactive sugar solution which goes round the body showing up hot points where the body metabolises the radioactive sugar fastest. That will indicate any cancers or abnormal growths 5 mm or larger.  (This is fodder for the myth that "sugar feeds cancer.")

You used to have to go to Wellington to have a PET scan in New Zealand but now we have a machine at Mercy/Ascot in Auckland. I'm not sure about the mainland. 

The PET scan is commonly used together with a  CT scan. The difference between this combined procedure and the CT alone is the radioactive nature of the injected substance, the length of time you have to wait before you go into the machine, and how you leave the building still a little bit radioactive. 

How they are conducted
If you read this story from Tommy Donvaband's website, you will have many of your questions about PET scans answered. Tommy is a British writer and one of our members who answers the how question beautifully. Well worth the read just for how it shows the patient experience in general. 


Scroll down for the heading, Glowing Nowhere. 

When and why are some patients tested with this scan? Sounds as if it's used to see if chemotherapy has worked or together with a CT scan to get a more accurate picture in difficult to diagnose scenarios.

Committee member Tammy von Keisenberg wrote the following about the use of CT scans and PET scans together in Auckland. 

PET stands for Positron Emission Tomography.  These scans aid in diagnosis as they can show pictures of abnormal cells/cellular activity in the body.  

A PET is used in combination with a CT scan ( computed Tomography ).  So, a PET CT.

This is able to detect early stages of disease often undetectable by CT  or MRI (magnetic resonance imaging) alone.

A PET CT will give your doctor much more specific information and can distinguish between benign and malignant disorders. Whereas an ultrasound, xray, MRI or CT will only confirm the presence of a mass.

When disease is present there are changes in the biochemistry of cells and tissues. In a cancer, cells grow at a much faster rate ( increased metabolic activity ).

A PET CT scan begins with the patient being injected with a radioactive form of glucose – fluorodeoxyglucose or FDG.

This travels throughout the body and settles in organs or tissues that have  “increased metabolic activity”, such as an area of rapidly growing cells.

During a PET CT the patient lies on a table that moves through the scanning machine.

The FDG ( radioactive glucose ) is absorbed more readily in the areas of increased metabolic activity/rapidly growing cells and shows up strongly on the scans.

The CT component adds anatomical information to the PET and provides very accurate information on the location of disease in the body.

So, a PET CT will tell if a mass is malignant or benign. A benign mass will not  take up the radioactive glucose.

A PET CT can monitor if any residual tumour is left after surgery, after radiotherapy and chemotherapy. It will show if the tumour is responding to chemotherapy and gives the doctor information that may lead to changes in treatments at a much earlier stage than conventional scans would.

To summarize;

PET CT’s give information about the body’s metabolic activity that can’t be detected on ultrasound, xray, MRI or CT alone.

The combination of PET CT scanning gives a precise location of disease and often the severity of disease.

The PET CT shows up disease much earlier than other scans and so helps doctors diagnose and treat disease more quickly. They give valuable information on how the treatment is working  and let the Dr  change/alter treatments more quickly  with other forms of scanning.

Why we don't hear so much about them 
I couldn't get hold of an oncologist to ask this question so asked Tammy again. Tammy has been a mentor on the Oral Cancer Foundation for many years, is a medical professional and has gained a fair bit of knowledge about head and neck cancer.

They have them frequently in the US because insurance pays.  People in the US ask for them as they think it gives them peace of mind.  I sure would not want one every couple of months because radiation is cumulative. They are used here if there is a suspicion of cancer. Or an MRI doesn't clearly define a lesion. Or to see if you are responding to chemo. I know melanoma patients get them after they have had Keytruda to gauge response and whether it is worth continuing with the drug. Research shows no difference in outcome between scanned patients and non-scanned patients. 

Are they reliable? They are only inaccurate if used too early. Should allow three months post surgery and post radiation for inflammation to settle down. Otherwise the inflammation will light up, hence the false result.


 Nothing in cancer medicine is all that clear, is it? It would be nice to hear from a cancer specialist about the use of the PET in New Zealand. 

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Of the big three cancer treatments – chemotherapy, radiation and surgery – none are particularly much fun for the patient. Research suggesting one of the three – radiation – can in some cases be reduced is therefore good news all round.

The second story this week is another look at research aimed at halting growth of cancer tumours.


# Since cats are known to eat people when they die, is their cute kneading actually them tenderizing us?
# Statistically speaking, you get married to the person most likely to murder you.
# Diseases that have been almost completely wiped out must be very lonely.


Novel Approach to De-escalation for HPV-Positive Head and Neck Cancer

(U.S.) Patients with human papillomavirus (HPV)-positive (HPV+) head and neck cancers who respond to induction chemotherapy can subsequently be treated safely and effectively with a substantially lower radiation dose, show new results from the OPTIMA trial.

Radiation therapy (RT) or chemoradiation therapy could be de-escalated by 30% to 35%, the researchers report. These patients still achieved excellent pathologic complete response (pCR) and excellent survival and progression-free survival (PFS). Overall survival ranged between 97% and 100% for these patients.

Moreover, adverse event rates were lower for patients who received de-escalated RT or chemoradiation therapy (CRT) than for patients who received standard CRT, with significantly fewer patients dependent on a feeding tube.

"This degree of de-escalation with high-risk patients is novel, as is selection using induction as the key component to reduce radiation doses and subsequent toxicities to such low levels," said Tanguy Seiwert, MD, lead author of the study and an assistant professor of medicine at University of Chicago Medicine, Illinois.

"In my opinion, treatment for HPV-positive disease should be de-escalated when possible, and induction is an ideal method to identify HPV-related head and neck cancer biology," he added.

Full story:

Targeting protein may stop tumors from spreading

(U.S.) New research published in the journal Oncogene uncovered a protein that helps tumors to spread by enabling them to grow blood vessels. Blocking the protein stopped tumors from metastasizing efficiently in laboratory experiments.

The new study was led by James P. Quigley, a professor from the Department of Molecular Medicine at The Scripps Research Institute (TSRI) in La Jolla, CA, and Daniel Rifkin, a professor of medicine working at New York University's School of Medicine in New York City. Elena Deryugina, an assistant professor at TSRI, is the first author of the paper.

Deryugina and her colleagues started out from the observation that lower levels of a protein called latent TGF-beta binding protein 3 (LTBP3) correlates with better survival outcomes in people with certain forms of cancer.

In order to promote metastasis, LTBP3 binds to another substance known as TGF-beta, which is a "transforming" growth factor that plays a dual role in cancer, as it can either help tumors to spread or stop them from doing so.

As with growth factors in general, our bodies require TGF-beta to function properly. Research has shown that in normal cells and early cancers TGF-beta suppresses tumors, but in more advanced cancers it transforms and promotes the growth of tumors.

The challenge for researchers so far has been to mitigate the harmful effects of TGF-beta without altering its key role for normal cell functioning.

In the new research, Deryugina and colleagues investigated more closely the interplay between LTBP3 and TGF-beta.

From previous research that they conducted together, the scientists knew the many ways in which LTBP3 helps to regulate TGF-beta by attaching itself to it. However, they didn't know whether the protein controlled even more processes or had a stand-alone role in driving cancer metastasis.

Full story:


Written by a contributing member based on stories from Google Alert

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March 5 Meeting in Auckland

Our next meeting is at 11.30, 5th March.

Where the place? Domain Lodge, diagonally opposite the hosptial.

We will have time for news, introductions, questions and discussion. Diana will be back and will update you on exciting developments in our network. 

Our speaker, who will address us from 12 to approximately 12.50 am, is one of the advocates from the North Shore Health & Disablity Advocacy Serivice. 

Two years ago, before we had our website, we were addressed by an advocate from the Auckland service and I have also investgated the Code of Patient Rights and the Health and Disability Commission in a previous blog.


Please let me know if you have any questions you would like me to ask the advocate. 


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