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Maureen Jansen's Posts (157)

Lifting us up: Friendly Friday

 

We have two friendly things this Friendly Friday. One is yesterday's baby news. Our prime minister had a baby girl and I think most of us are smiling ear to ear. 

The second thing is a stunning photograph taken by Olwen and posted on our Facebook page. It's looking at the Wither Hills from the Wairau Diversion. Hills and mountains also lift us out of our petty day to day issues. Hills, mountains, nature, prime ministers in office having babies. 

You can see a mountain poem and a mountain quotation below and finally a picture of the new entrant into our New Zealand community. 

 

“Mountains seem to answer an increasing imaginative need in the West. More and more people are discovering a desire for them, and a powerful solace in them. At bottom, mountains, like all wildernesses, challenge our complacent conviction - so easy to lapse into - that the world has been made for humans by humans. Most of us exist for most of the time in worlds which are humanly arranged, themed and controlled. One forgets that there are environments which do not respond to the flick of a switch or the twist of a dial, and which have their own rhythms and orders of existence. Mountains correct this amnesia. By speaking of greater forces than we can possibly invoke, and by confronting us with greater spans of time than we can possibly envisage, mountains refute our excessive trust in the man-made. They pose profound questions about our durability and the importance of our schemes. They induce, I suppose, a modesty in us.”
― Robert Macfarlane, Mountains of the Mind: Adventures in Reaching the Summit

 

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Continuing our weekly round-up of general health news with one outlier, a story about a computer winning a debate with humans. I mean this could be about health, because health is increasingly using AI and it was too good to omit.

Eggs. If you are old like me, you will remember the brilliant "Go to work on an egg" campaign created by UK novelist Fay Weldon in the 60's.  Decade or so later, eggs became bad for you, too much cholesterol. Maybe you should just eat the whites. 

Now it looks as if we can go to work on an egg all over again.

https://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=12062951

And those occasions when you are debating with friends and you have to bluff to cover up your lack of data? Doesnt go well, does it? Now if you were a specially programmed IBM debating machine, you would have no such problem. 

https://www.nzherald.co.nz/business/news/article.cfm?c_id=3&objectid=12074104

And the sugar tax. I shudder when I see 2 litre bottles of Lemon and Paeroa going for a couple of dollars when a similar quantity of milk costs more than twice as much. These blatantly sugary products are bad for our teeth, a situation I am made much more aware of since radiotherapy. But Coca Cola wants to stop the sugar tax bringing  up memories of the tax on tobacco debate all over again.

https://www.stuff.co.nz/business/industries/104744933/cocacola-recruiting-lobbyist-to-fight-sugar-tax-despite-new-research-revealing-such-taxes-can-save-lives

The more things change, the more they stay the same ... except with artificial intelligence which, well, we might need. 

 

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The Role of the Carer

I have been both a carer and a patient. I was more than a carer - I was a caregiver for my husband when he had dementia over several years. I’ve been a cancer patient on and off since 1996 with big healthy gaps in between.

What we must acknowledge is that the burden of disease falls on both carer and patient alike. How can a parent not be involved in her child’s care, or a husband his wife’s, a daughter her father’s? In many cultures, it is the whole whanau that looks after the patient.

It can be hard for the carer to gain respect. Even though dementia robs a patient of good judgement quite early on in the process, I was often scolded by healthcare workers for trying to make decisions for my husband. Eventually I had both the types of Power of Attorney and was seen as my husband’s spokesperson. It wasn’t an easy process.

People say that when one person gets cancer, the whole family gets it. I had the irrational thought that my repeated cancers caused my husband’s mind to fail. There was so much stress in the family every time I had one of my four diagnoses. Carer stress for my husband.

And think of the stress on the spouse of a head and neck cancer patient. Both patient and carer have to take time off work. The treatments are long and brutal, taking months to be complete and a year or more to recover from. Travel and accommodation costs accumulate.

Much worse of course, is to see your loved one suffer. Everything else falls away as the two of you walk down the lonely cancer path together.

Reading some letters written to a now retiring head and neck surgeon in the 90s, I realised how much the carer had to learn. How to operate the PEG, how to cook soft meals for her partner, how to manage a long list of medications and figuring out how best to administer them.

Since 2009, I have been a member of three head and neck support groups. In the first one, there were a lot of carers whose partners had passed away but who stayed on to support new patients as they joined the group. They had become experts by experience and had developed empathy for head and neck patients. They wanted to give back to the group which had supported them.

There has been a lot of research about caregiving and new terms invented like “patient +” to denote patient and carer as a unit. Carers are sometimes referred to as “co-survivors”. Of course, as I come to write this piece, my Googling skills have failed me. I can’t find references to either word, but I have heard them used.

Therefore, these are just my own thoughts on the role of the carer. I would be grateful for any links to research or articles on the role. Even better would be your own experiences.

 

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Tuesday Health News

Three stories, two from NZ and one from overseas. 

What are we going to do about affordable access to dental care?  

https://www.stuff.co.nz/national/health/102571375/poverty-causing-third-world-dental-problems-hamilton-dentist-says

Our poor Middlemore Hospital.

https://www.stuff.co.nz/national/104555134/counties-manukau-dhb-considers-moving-cancer-services-out-of-earthquakeprone-building

Hope for better detection and treatment of head and neck and other cancers using artificial intelligence. (If only we could use it for dentistry.)

https://www.theguardian.com/technology/2018/jun/10/artificial-intelligence-cancer-detectors-the-five

 

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Always thought this poem captured some of the essences of the "the full catastophe" of life as Zorba the Greek says. Catastophe in a good way - the gamut of ups and downs and emotions and conflicts, pains and joys ... Written at a time when a man was the default option but of course applies to us girls too. 

If—
BY RUDYARD KIPLING
(‘Brother Square-Toes’—Rewards and Fairies)

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son!

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Hope for dry horrors?

You know the feeling. You forgot your water bottle so you dash into the dairy to get a new one. You’re annoyed because bottled water is expensive and you have five empty bottles stashed at home.

When you approach the shopkeeper, you can barely talk because your tongue is stuck to the top of your mouth.

You kick yourself for coming out without water, gel, lozenges or gum. Dry mouth is unforgiving and you have to be prepared.

I’m actually a lucky post-radiation patient. I have plenty of saliva - just not in the right places and when I go out for a walk or mow the lawn my saliva just disappears because I’m breathing through my mouth. The rest of the time I drool out of my paralysed lip where the saliva I do have seems to pool. You can’t win.

Forty percent of us develop dry mouth after treatment, according to the article below. Sometimes there is an improvement in the first five years but in a few patients, saliva is gone for life. There are products that can mitigate the effect but no magic bullet.

That’s why everyone was excited when an article did the rounds last week announcing that a citrus peel extract could save saliva cells from radiation damage.

“D-limonene Found in Citrus Oil Could Reduce Dry Mouth in Cancer Patients”

The original study was called:

“Aldehyde dehydrogenase 3A1 activation prevents radiation-induced xerostomia by protecting salivary stem cells from toxic aldehydes”

Basically it is about a study at Stanford University which still has years to play out. Radiation therapy kills saliva cells, even the stem cells and progenitor cells, the ones that will eventually grow into mature saliva cells.

Radiation causes an increase in aldehydes which harm the cells. There's an antidote in our saliva called aldehyde dehydrogenase or 3A1 but this friendly compound is not enough to stop the aldehydes damaging the cells.

Doctors and scientists have found that an organic compound found in citrus oils can boost the 3A1 enzyme. It’s a common compound, D-Limonene, used by some natural health advocates as a supplement and by others as a cleaner. It could be harmful to take it long term off your own bat and it needs to be used by people undergoing radiotherapy before the cells are damaged.

The doctor who is carrying out the study with scientists listened to her patients for many years as they complained about their lack of saliva. Dr Rosen, testing on mice, found that the d-limonene reduced aldehyde concentrations in both adult and stem/progenitor cells .

How did she find the compound in citrus oil? She had access to 135 Chinese medicine extracts that had been used for 100s of years, boosting the likelihood they were safe. Seven of the extracts boosted 3A1 activity with the citrus compound being the most useful as it broke down quickly in the body and was deemed generally safe by the FDA.

NB This is just a study. 

Glossary

Xerostomia = dry mouth

Hyposalivation = reduced salivary flow

Submandibular glands = saliva glands under lower jaw/chin

Aldehydes = toxic compound

Aldehyde dehydrogenase 3A1 = helpful compound

D-limonene = citrus oil extract that might boost the 3A1 compound.

PS some medical jargon from article.

Acute or chronic hyposalivation can impair speaking and swallowing and increases the risk of oral pain, ulcerations, infections, and dental caries. Submandibular glands contribute more than 60% of unstimulated saliva and are essential for resting salivation and oral lubrication. Despite advances in intensity-modulated radiation therapy for HNC, about 40% of patients develop xerostomia . Current treatments are suboptimal, limited to temporary symptom relief.

 

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Wouldn't it be great if everyone could work together nicely? If hierachies were kept to a minimum and everyone had a say and a stake in the running of organisations? it's not going to happen, is it? However, we can strive for cultures of mutual respect and support - especially in hospitals where all citizens should have a stake and health care workers, who have our lives in their hands, should be provided with a friendly workplace. 

A social media campaign that caught my eye this week was #CrazySocks4docs. Apparently depression and suicide are high among the medical profession and 1 June is a friendly way to raise awareness. People are asked to wear crazy odd socks, photograph them and post on social media. 

You can read about how it started here. http://serenityblog.doctorjuvi.com.au/blog/socks4docs-mental-health-of-doctors/

Then there's an article about culture change in American hospitals from the New York Times. It's very wordy but interesting. How changing the culture from a traditional, hierachical one to a more democratic system where people are not too afraid to speak up has yielded measurable improvement. 

https://www.nytimes.com/2018/05/31/well/live/doctors-patients-hospital-culture-better-health.html?rref=collection%2Fsectioncollection%2Fhealth&action=click&contentCollection=health&region=rank&module=package&version=highlights&contentPlacement=2&pgtype=sectionfront

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Health Literacy Symposium

 

Two nervous, tui clad committee members delivered a 15 minute presentation at the inaugural Health Literacy Symposium at North Shore Hospital on 24 May. 

Tammy and I spoke about our inspiration, the power of visual images to inform people, the benefits of online support groups like our closed Facebook group, our website and our desire for better access to our notes. We, as well as Chairperson, Diana, and our graphic artist, Olwen, all met on the American online forum of the Oral Cancer foundation. We wanted to give New Zealanders the benefit of a local support network dedicated to support and information. 

Tammy explained the information given by the hospital was "frankly mininmal" and how she learnt how to care for her husband via online support by her peers. I explained how much I had learnt from previous online support groups and how I wanted to give back but with a New Zealand focus. Ironically, I learnt how to avoid the hallucination-causing morphine from Tammy on the Oral Cancer Foundaton. I am one of a few people who are hypersensitive to morphine and found Fentanyl more tolerable during my last treatment in 2014. That is an example of health literacy and the patient being empowered by her peers.  

It's nerve-wracking talking to an audience of 150 health care people but with Tammy's background as a registered nurse and my status as an ex-teacher plus the sense of conviction we have for our cause, we rose to the occasion. Practising on the Zoom conferencing software with Olwen, we came up with alternate messages, burgundy slides and burgundy t-shirts with our logo. We were better branded than Tui beer. 

 Many thanks to Olwen, whose design skills are extraordinary. Thanks to Zoom. Through it we proved that three stubborn, opinionated women from Whangarei, Red Beach and Blenheim could work together as one. Zoom even allows you to record your conference which I was able to do. Reviewing it before the "performance" was a confidence booster. 

Thanks to Cosette who let us use her photo. That picture of Cosette in her mask always typifies the head and neck cancer experience to me. And to Bob for the use of his PET scan image. We also appreciate being asked to speak by Director of Patient Experience at WDHB, David Price.

Finally, credit to Dave deBronkart of ePatient Dave fame who gave us some quotable quotes like, "Literacy is an essential enabler of autonomy." 

Finally one more time, the last slide of our presentation.

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Thyroid cancer, a patient's story

 

Thyroid cancer comes loosely under the heading of head and neck cancer or is at least treated by the same ENT/ORL surgeons who treat us. I believe that most thyroid cancers are very curable. I think this is an interesting story of how one person coped with it.

Many thanks to Mary for sharing her story with us.

About seven years ago I noticed a swelling in my neck, went to the doctor, then to a specialist for biopsy. Was diagnosed as having hurthle cell cancer. Went straight in to local private hospital where my thyroid was removed. Not straight forward as the surgeon intended to leave my parathyroids but mistakenly took out the parathyroids and left two little bits of the thyroid. This resulted in a quick trip to the Whangarei Hospital and they were removed. Within 24 hours of the first op I was getting severe cramp. Quickly fixed by starting on the thyroxine and calcium; apparently without parathyroids the body cannot process calcium, resulting in cramp.

Post op I was referred straight to Auckland Hospital under Professor Ian Holdaway head of endocrinology. According to my daughter in law, who knows these things, he is world class. I think it was because it was hurthle cell which is not common and can be tricky.

I have only praise for Ian and the care he has taken of me. I was given radioactive iodine treatment which involves drinking a liquid through a straw followed by a scan. I can’t remember the time interval before the scan. The radioactive iodine attaches to any thyroid cells which may remain in your body. I was checked in six months for any remaining cells. Initially Ian encouragingly told me 93% of people only need one dose. I needed four; the fourth time involved staying in Auckland Hospital isolated in a lead-lined room for several days. After the follow up scan, Ian said it was all clear except for a tiny spot near my lungs but he was confident that it would be gone before the next scan, which it was. At that stage I was having annual check ups and scans. However Ian is retiring so has transferred me to Whangarei hospital for any future checks.

The unusual thing about my story is that at no time, except for the initial cramps, did I feel sick, look sick or have any effects at all other than the cancer, the treatments, or the medication. I was lucky that I noticed the swelling in my throat so it was removed before it could spread.

Psychologically I was distressed initially as is anyone with a cancer diagnosis and very nervous about the hospital visits but one of the ways I handled it, differently from most people I know, was to limit the information I read. The internet is full of theories and cures, as are well meaning people and I did not feel able to distinguish between them. When told by the surgeon to look it up I insisted he give me specific sites to read. I was lucky, Ian Holdaway, the surgeon and my GP all said I could ring them at any time with questions. I know that is not everyone’s experience.

I was on, and have been ever since, thyroxine, calcium and calcitriol. I had heard that some people who are on the generic thyroid pills have had problems with them so I asked the local chemist if I could have the original thyroxine and he said I could have anything I like. They work for me. Originally I was monitored by my GP monthly, then two monthly and recently three monthly. My GP tweaks the dosage sometimes.

 

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World Head and Neck Cancer Day reminder

Now is time to have another look at the newsletter Olwen and I made last year to mark World Head and Neck Cancer Day on 27 July. 

It was our first WHNCD and we held a stall at North Shore Hospital as well as linking with private providers throughout the city and with people all over the world. 

This year there will be more events throughout New Zealand and for Aucklanders a stall on Level 5 of Auckland City Hospital on 25 July. We will make that whole week a dedicated week for raising awareness. North Shore Hospital will be represented and across town Middlemore will hold an event as well as Mercy/Ascot and Gillies Hospital. Whangarei Hospital will be active. 

Christchurch is holding a substantial event and we expect to see more centres announcing their plans soon. 

Our goal is to raise awareness of causes, symptons and prevention, especially the HPV vaccination. 

whncday2017 to send.pdf

 

 

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Vanishing point: Friendly Friday

I'm a real sucker for pics of roads disappearing into the distance, all the better if there's an avenue of trees. Not only do they draw the viewer's eye into the picture and give a 3D effect but there is a sense of mystery too. What lies in the far off distance? It's a very pleasing aesthetic and we need that when we are coping with cancer. Anything that feeds the soul.  

  

 

This picture, taken in West Auckland by a friend of the family, speaks to me as a cancer patient treading down the post treatment road on that well-known  but uncertain journery. Credit to James : @thatphotographyguynz  

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What matters to you?

 

I've heard mention of the "What matters to you" question in health care but have never been able to figure out what it meant. It sounded hopeful, a way of establishing the patient's concerns and even values. Sounds like an awkward question to ask, though, and what do you do with the information once it is gathered? A bit of digging and here is what I've found. 

  •  "What Matters to You? Day started in Norway in 2014 with the aim of encouraging and supporting more meaningful conversations between people who provide health and social care and the people, families, and carers who receive that care. 
  •  The key purpose of the question is to promote dialogue and deep listening between providers and the people for which they care. 
  • We should ask our patients, “What matters to you?” rather than, “What is the matter?”
  • The movement has spread to 17 countries
  • Asking “What matters to you?” becomes one of the fundamental questions underpinning the discussion with patients.
  • Shared decision-making ... is a two-way relational process of helping people to reflect on, and express, their preferences based on their unique circumstances, expectations, beliefs and values.
  • You can ask it in various ways like "What are the things that are important to you at the moment?
  • The question “What matters to you?” tries to get to the essence of patient centered care, which the Institute of Medicine has listed as one of the priorities for quality improvement.
  • it also helps you to understand the person in the context of their own life and the things that are most important to them. With this crucial insight you are in a much better position to work with the person to find the best way forward for them.
  • June 7 is WMTY Day

http://www.whatmatterstoyou.scot/

     Do we want our doctors to ask us matters to us? Below is what one of our members wrote.

"As patients we hope that what matters to us, matters to our providers. Providing care should be a partnership so knowing what's matters most to patients makes us feel cared for, listened to and respected." 

 

 

 
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Tuesday Health News

 

A familar face in the first story. Dr David Grayson is one of our members and a keen innovator in the health field. 

https://www.stuff.co.nz/auckland/local-news/north-shore-times/103891979/video-meeting-popular-alternative-to-specialist-hospital-visit

A key issue in New Zealand Health. Do we need so many DHBs?

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12049658

 

And from the NYT: Do we need so many supplements? 

https://www.nytimes.com/2018/04/03/well/older-americans-vitamins-dietary-supplements.html

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Dr Giuseppe ‘Peppe’ Sasso is currently the Clinical Director of the Radiation Oncology Department at the Northern Regional Cancer and Blood Services, Auckland City Hospital and Auckland District Health Board (ADHB), having moved to New Zealand, from Italy with his family in 2010.

Peppe’s Talk

Auckland is very privileged, says Peppe Sasso. There is a fantastic public service for radiation oncology, and an outstanding private service.

Peppe comes from Italy and has worked in England, France, Spain, Australia and NZ. He wants to make Auckland facilities the best in the world for radiation oncology.

In Auckland he is in charge of 100 people and head of radiation oncology in New Zealand, the only country in world that has a national database of radiation treatments. There is equity of access for rural and metro patients.

They do 3000 courses of radiotherapy each year. There is not a bigger single faculty this side of the equator.

But the building in which radiation oncology is housed is a national disgrace. Let’s make Auckland a true flagship, he says. In New Zealand, we don’t always aim high enough. We have to ask for the best.

He calls radiation beautiful technology. It is progressing like mobile phones, improving all the time. Hopefully in his lifetime they will achieve zero side effects. They are certainly not there yet for head and neck cancer. As for people who had the treatment over ten years ago, he said their experience was like driving a car in the old days before seatbelts and airbags. It got you there but was not as safe. Now we have more safety measures and much better targeting.

He uses the raw product, electricity and turns it into rays that are becoming better and better targeted with treatment getting cheaper and cheaper. Of all cancer treatments, radiation is the best value for money - although it won't be the best thing for every patient of course. Radiation oncologists and surgeons work well together. They are NOT in competition - in modern medicine you need more than one person knowing it all.

But medicine is hard to fund. It’s difficult to get the DHBs to keep up with the funding even when a good business case can be made.

Radiation takes a lot of planning with much time spent on the computer. The team needs a physicist to help and it can take three days to plan a treatment. Software is getting better each year. Raysearch is the company that makes the software to allow oncologists to target only the cancer not the healthy tissue around it.

In terms of cure there is a 0.3 - 0.5 % increase in survival each year. There are small incremental changes. Many cancers are becoming chronic diseases.

Some of the newer radiation techniques are so successful that if they were drugs they would be in the headlines. 3DCRT (three-dimensional conformal radiotherapy) and SABR (stereotactic ablative radiation therapy) are two examples.

A C-Arm linear accelerator is the creme de la creme in the line-up of new radiation machines. Especially useful for curing prostate cancers.


In 5 - 10 years they hope to have a proton therapy machine (much more targeted therapy) but at a cost $25, 000,000 it is a battle. Ironically 50% of magnets for the machines are made right here in Mt Wellington but are sent overseas to work in overseas machines.

What about chemo? As radiation gets more targeted you won’t need it. A radiation and immunotherapy combination is looking to be very effective as a future option. In fact for HPV cancers it is possible that radiation will boost the immune system’s chance of killing the cancer by unmasking it so the immune system can recognize it. 

What drove him to work in the radiation oncology field was the challenge - the challenge of curing cancer. There’s a 60 - 70 % cure rate with the linac (linear accelerator) machines such as those used in Auckland and 90% with the proton machines they hope to get one day.

Peppe called his talk: “I got the power - the intangible rays.” Many of us have suffered the side effects from radiotherapy but we’re still here and Peppe’s talk definitely gave us a ray of hope for the future.

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Monday's Meeting

It went well! We had 19 attendees, two via Zoom. It was our 2018 AGM with a successful outcome. Diana was relected Chair, Cosette is the new Secretary and I am on the committee with the old crew plus Toni Davis (Auckland) and Heather Anderson (Timaru). We established Dr Andrew Miller as a well integrated part of the committee in the role of advisory member. 

We have agreed to shorten our formal name to make it easier for the editors and graphic designers and more inclusive of all our lovely people in the head and neck cancer community. 

We are now the Head and Neck Cancer Support Network. 

Some other techincal changes were also made to our constitution. (The name change does not formally take effect until we have made this change and informed the Companies Office.)

Diana read her Annual Report - a fine summary of the activities we have carried out over the last year.

We revealed the large poster made for the Waitemata District Health Board Excellence in Health Awards. We have been short-listed and judging ceremony is Thursday 10 May at 4 pm in Whenua Pupuke, the new building at North Shore Hospital - by the lake. 

T-shirts were on display. See the "shop" on this website. 

After the AGM we have a lively and inspiring talk by Peppe Sasso of Radiation Oncology. Summary coming up soon. 

 

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Two events in the last 10 days, one huge and global and one small and local, showed the joy the basic connection between human beings can bring.

The picture of Kim Jong Un and Moon Jae-in shaking hands on the border of North and South Korea ... Kim Jong Un is a brutal dictator but after all the decades of hostility, it was a symbolic moment of reunification. A bit like the tearing down of the Berlin Wall. Maybe only a fleeting glimpse of that but still ...

The viral story about an ED consultant at Waikato Hospital and the crying baby. .. The baby’s mother was sick and he was the only one who could settle the baby down. He went about his work with the sleeping infant clinging to his shoulder..

Both these stories are about breaking down walls, pushing down barriers, communicating, making a human connection.

A movement in medicine which I am investigating is called “What Matters to You?” and is about improving medicine and health by breaking down boundaries between doctors and patients.  Haven’t had time to complete that this week but here is a quotation from an article about it. Exciting stuff.

“To successfully address this critical component of quality and safety, we must break down critical barriers between clinicians and patients. Patients should be educated about the essential role they play in decision making.” https://www.nejm.org/doi/full/10.1056/nejmp1109283?page=1&sort=oldest

More next week.

Meanwhile, looking at connection, here is a picture of three of our members who met at a Gypsy Fair in Timaru last week. They are from all over NZ but met at the fair, seeking shelter from the storm:)

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The anti-vax movement is generally  (and justifiably) treated with a good dose of scepticism and ridicule and it’s likely any anti-radiation movement will suffer the same fate  But as lead story this week explains not everyone swears by radiation treatment.

The second story looks at treatment delays – a  nightmare when it’s the medical community that seems at fault, but likely a lot worse when it is the insurance industry. (This is an American’s story.)

Meanwhile

# We are living a day which is going to be an exam question in a history class 50 years from now
# Turtles cannot be claustrophobic.
# 1 of the most amazing sounds in the world is the sound of a baby’s  laughter. Unless it is 3am...and you don't have a baby

https://www.reddit.com/r/Showerthoughts/

A debate for oral cancer treatment: radiate or not?
(U.S.) Arjun Joshi knows what he’s up against. Innovation can be slow and methods entrenched when it comes to the fight against cancer. The 40-year-old threatens to disrupt a $5 billion industry by steering patients away from radiation, long considered an essential element in the anti-cancer arsenal, alongside chemotherapy.

Radiation can destroy salivary glands, limit range of motion in the neck and wreak havoc with taste buds. Joshi also thought a different kind of tumor could use a new approach: The sexually transmitted infection HPV has surged as a cause of head and neck cancers, rather than the usual smoking and drinking.

Joshi developed a surgical specialty in head and neck cancers — he now practices and is a faculty member at George Washington University School of Medicine and Health Science

For select patients with HPV-related tumors, he has  adopted a strategy of starting with three rounds of chemo and then operating — rather than risk the side effects involved with the more conventional radiation-chemo combo. He’s careful to point out that he is not ditching radiation altogether: If patients don’t respond to the first round of treatment, he will advise radiation therapy. The American Cancer Society estimates that more than 37,000 men will be diagnosed with oral cancer this year — making it the eighth most common form of the disease for men.

At this point, Joshi’s way of attacking this form of the disease only has a few dozen documented cases in the medical literature versus thousands for radiation. In a clinical trial published in 2017, Joshi and five co-authors studied 19 patients diagnosed with a type of throat cancer. They were treated first with chemotherapy, followed by robot-assisted surgery once the tumors had shrunk by 80 percent or more.

Of the 14 patients available for follow-up analysis, one died, and three more whose cancer recurred were treated with radiation. The results, the authors declared, were “promising” but require further study. “It appears effective while avoiding adverse effects of” radiation therapy, they concluded.

Dr. Daniel Ma, a radiation oncologist who treats head and neck cancers at the Mayo Clinic, is less impressed. While he commended the “innovative trial,” he says seeing cancer recur in 21 percent of patients is not great — and when you add in the patients unavailable for follow-up, the misses rise to 42 percent. “Based upon this failure rate, it is difficult for us to be enthusiastic about this approach,” Ma says.

Joshi points to a more recent follow-up study at George Washington in which 17 of 20 patients (85 percent) were successfully treated without radiation, while two died and one more survived after being treated with what’s known as “salvage” radiation.

“The fact that we can follow this induction chemotherapy protocol and surgery with radiation therapy [when necessary for these aggressive tumors] with still excellent outcomes underscores the flexibility and safety of such a treatment plan,” Joshi says.

Full story
https://www.ozy.com/provocateurs/a-debate-for-oral-cancer-treatment-radiate-or-not/81072

Battling insurers for life-saving treatment

(U.S.) AS I LOOK BACK on 2017, I am just happy to be alive. In the past 12 months, I dealt with two major threats to my life. The first came in the form of a devastating double cancer diagnosis. While that’s awful enough, the bad news was compounded when my insurer flouted state laws intended to protect patients like me, refused to pay for my treatment and dragged out a lengthy appeals process when every passing day increased the risk to my life.

After I experienced nosebleeds and fainting episodes early last year, my doctors ran a series of tests that revealed an unimaginable double whammy: leukemia, along with a large, deep and rare tumor inside my head.

I underwent chemotherapy for the leukemia and, in May, surgeons removed a malignant carcinoma from my parotid gland, a major salivary gland just in front of the ear, along with 36 lymph nodes. But they were unable to get all my cancer and, in July, I was told that the only way to reach the remaining cancer, without disabling me for life, would be for me to begin proton beam radiation therapy. The alternative — traditional radiation — would have caused me to lose the ability to speak, swallow and move one side of my face.

After I was told that the proton therapy was my only chance for survival, my insurer repeatedly denied my claims for it, claiming that the therapy is “experimental and investigational.” When my doctors insisted during a peer-to-peer review session that this therapy was my only chance, a company representative justified the denial by crassly reading a single paragraph from the company’s health policy brochure. Even my doctors, who have seen a lot, were appalled.

Contrary to the insurance company’s assertions, proton therapy is far from experimental. In fact, proton therapy is Medicare-approved, widely accepted as an effective treatment and scientifically proven. For many patients like me with head and neck cancers, or those with cancers in the spine, lung, breast or prostate, it’s the best option for survival with any quality of life.

But I found myself fighting two types of cancer while simultaneously fighting with my insurer as time was running out.

Author Daniel Bauder lives in Yorktown.
Full story
https://pilotonline.com/opinion/columnist/guest/article_d6267bec-3f5d-11e8-aec4-579f21fb0bfa.html

 

 

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Tuesday News, 1 May

There is just too much health news going on to NOT restart our Tuesday Health News. This is about health in general. 

Does the Minister of Health, David Clark, have the worst job in New Zealand at the moment?  This story is about the much needed end to the GP fee problem we wrote about last year. Depending on where you live, you might pay $60 to go to the GP or $15.00. It's a funding formula that is built into the system and is going to be a headache to change. Both parties promised to make GP visits affordable for all but now it's looking just too hard with all the other things going on in health. 

GP fee cut: Govt needs to 'prioritise promises' - Minister

The government may not be able to deliver on a pledge to reduce GPs fees on 1 July because it needs to prioritise its promises, says the Health Minister.

Minister of Health David Clark. Photo: VNP / Phil Smith

Prime Minister Jacinda Ardern made the announcement in the early stages of last year's election campaign, saying Labour would knock $10 off the price of a GPs visit for everyone from 1 July.

But Health Minister David Clark signalled yesterday that it would not be happening within that timeframe.

Mr Clark told Morning Report today the coalition government needed to prioritise the things that had been promised.

Full story

http://www.radionz.co.nz/news/political/356247/gp-fee-cut-govt-needs-to-prioritise-promises-minister

How posting a daily photo can be helpful for your mental health
29 Apr, 2018 Daily Mail

Posting images online gives people a sense of routine, boosts their interaction with others and makes them feel more engaged with their surroundings. Photo / Getty Images

Taking a photo a day is good for people's wellbeing, new research suggests.

Posting images in online photo-sharing forums for two months gives people a sense of routine, boosts their interaction with others and makes them feel more engaged with their surroundings, a study found, reports the Daily Mail.

A daily photo also encourages people to leave the house, with 76 per cent of the pictures in the study being taken outdoors, the research adds.

Some even claim sharing photos with others helped them cope with a death or illness in the family, the study found.

Full story

https://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=12041758

 

Electronic referrals set to be more reliable than paper versions at Waitemata DHB

https://www.stuff.co.nz/auckland/103452740/electronic-referrals-set-to-be-more-reliable-than-paper-versions-at-waitemata-dhb

Read more…

 

It's not done to talk about a public holiday after the event but I'm going to try. Anzac Day (two days ago) is a big cultural event in New Zealand. My view of WWI is just sadness at what I see as the careless waste of young men's lives. But below, if the link works (it takes you to their Facebook page then a video of them singing in Queenstown) is a sweet rendition of songs for Anzac Day by the Modern Maori Quartet. I like the last song in the medley.

https://www.facebook.com/ModernMaoriQuartet/videos/995039077330461/

My favourite short poem about WWI is by Siegfried Sassoon and expresses the views of the first paragraph.

 Base Details

IF I were fierce, and bald, and short of breath,  
  I’d live with scarlet Majors at the Base,  
And speed glum heroes up the line to death.  
  You’d see me with my puffy petulant face,  
Guzzling and gulping in the best hotel,          
  Reading the Roll of Honour. ‘Poor young chap,’  
I’d say—‘I used to know his father well;  
  Yes, we’ve lost heavily in this last scrap.’  

And when the war is done and youth stone dead,  
I’d toddle safely home and die—in bed.   

 And the Band Played Waltzing Mathilda

And then an Australian poem and song that never fails to make me think about the men who came back so mutilated that they didn't fit the public's view of returning war heroes. 

 

Beyond Five

Beyond Five, an Australian head and neck cancer organisation posted the following: "On ANZAC day we honour the Aus & NZ men & women who served & died in wars. We also pay tribute to the health workers who developed plastic surgery & facial prosthetic technology that is vital to restoring function & confidence after .

Learn more http://ow.ly/p9zK50h7VBO

Sir Harold Gillies, pioneering plastic surgeon

And of course, it was a New Zealand plastic surgeon working with his British counterpart who was a pioneer of facial reconstruction: Harold Gillies.

Harold Gillies and Henry Pickerill’s pioneering treatment of soldiers with facial wounds during the First World War helped form the basis of modern plastic and facial reconstructive surgery. Gillies was born in Dunedin, New Zealand, and made a career in England; Pickerill was born in England and became the first director of the University of Otago’s dental school in Dunedin. During the First World War the two served at Queen Mary’s Hospital at Sidcup, Kent, a specialist hospital for facial injuries, where Gillies led the British section and Pickerill the New Zealand section. The two men were highly competitive and Pickerill, in particular, refused to acknowledge his Kiwi colleague’s contribution. But they each contributed to the development of plastic surgery.

https://nzhistory.govt.nz/media/video/pickerill-and-gillies-great-war-story

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