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Maureen Jansen's Posts (73)

Another poem! Friendly Friday

Olwen and I are gradually building up a collections of poems for inspiration, pleasure, catharsis and insight. This week there is one of my old favourites by American poet Robert Frost whose short simple nature poems contain a world of meaning. I've left it a bit late but every spring I think of this poem when the first little leaves of the deciduous tees are yellow or gold not green. I like the way Frost compares this delicate, short lived gold in the flower-like leaves to other things that last only a moment. 

It's a bit hard to read above so here is the PDF: nothin%20gold.pdf

The message of the poem is not depressing though. If nothing gold can stay, well then, we just have to enjoy these fleeting beauties while they last. 

The background of the poem is a spring tree I photographed last weekend in Rotorua. 

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Trismus is an innocent sounding name for a most annoying and sometimes serious side effect of head and neck cancer treatment.

It means limited mouth opening and can be caused by damage to the muscles and ligaments of the jaw by surgery or radiotherapy.

Once again, I’m going to attempt to explain it by including my own experience and information I have gleaned from doctors and online. 

A normal person could fit three fingers stacked horizontally in their mouth but I can fit only one and a half. I developed trismus after my last surgery in 2014, surgery that involved the left mandible or lower jaw and some lymph nodes in the region.

I remember the surgeon looking at me after surgery and then looking at his colleague and saying “trismus”. I knew what it was. I’d done my reading but I felt absolutely ghastly as I always do after prolonged surgery. My speech seemed to be all right and I couldn’t feel the trismus so I really couldn’t have cared less.

I just wanted the wound on my neck and chin to heal as well as the flap in my mouth and graft and donor sites on forearm and thigh. I wanted the multitudinous drain bottles to be gone and I wanted to go HOME.

When I did get home, I was called back to have a small top-up surgery to gain clear margins in the buccal mucosa (inside of cheek). It was then that trismus played a dirty trick on me. My mouth wouldn't open wide enough for the surgery and in the process my top front teeth were broken and had to be extracted. This in turn led to the long process of making a dental plate for a mouth that would not open wide. 

Afterwards, I was told to stretch with my finger and thumb and later to stretch with an ever increasing number of popsicle sticks or wooden tongue depressors. I wasn’t very compliant. No matter how I stretched there seemed to be no improvement and my poor, aging teeth felt the strain and one of them broke.

It just seemed hopeless and the trismus didn’t worry me at that stage because I could no longer bite at all and I could barely chew. I could manipulate soft food with sauces around my mouth with minimal chewing but didn’t need to open my mouth wide for that.

I should have stretched any way I could. My trismus hasn’t got worse but it hasn’t improved either. Maybe I could have achieved slightly better opening if i had stretched early.  It’s hard to clean some of my back teeth and it’s an awful job for dentists who have to work on my mouth.

More about causes from a maxillofacial surgeon

The trismus is because of fibrosis ( stiffening) of the ligaments and muscles that open and close the jaws. This can happen because of surgery and radiotherapy. Generally, the nerves are not too badly affected, so it's not so much a problem of weakness but scarring due to the surgery and radiotherapy

The trismus after radiotherapy happens because of a scarring process which is a reaction to the radiotherapy. Recovery is impaired because the blood vessels which are important for repair are also scarred ( endarteritis obliterans), so it's a twofold effect. Onset usually doesn't happen until 2-3 months after treatment, which is the timeframe for scarring to occur. It continues to worsen for some time unless you work hard to prevent the contracture.

(Endarteritis obliterans, mainly affecting small arteries, and leading to occlusion of the blood vessels from overgrowth (proliferation) of the lining cells.

https://medical-dictionary.thefreedictionary.com/endarteritis+obliterans)

Surgery-caused trismus is caused by scarring and oedema. The extract below is from OCF. http://oralcancerfoundation.org/complications/trismus/

In the case of patients receiving radiation treatment of the head and neck, trismus may progress slowly, even unnoticed for months, causing secondary changes to both muscles and joints. Thus treatment, consisting of gentle passive motion, should begin as soon as practicable.

(Trismus affects about 10 to 40 percent of patients. Having both surgery and radiation probably leads to increased risk.)

It should be noted that trismus is frequently overlooked. Patients may assume that the reduction in jaw mobility is ‘normal’, or that it will resolve on its own. It is also easy for radiation oncologists, surgeons and their nurses to overlook the condition. Patients receiving radiation therapy or combined radiation and chemotherapy often require feeding tubes or limit their intake to mostly liquids during treatment. Thus they may not realize the slow progressive onset of trismus, until they attempt to resume intake of soft or solid foods. In its mild form, it is not life threatening and easy to ignore. If left untreated, however it has the potential of making recovery more difficult, as well as increasing problems associated with speech, oral hygiene and swallowing.

Grades of trismus showing mouth opening ability

  • Normal Oral Opening, >40 mm 3+ Fingers
  • Mild Trismus, 30-40 mm 2-3 Fingers
  • Moderate Trismus, 15-30 mm 1-2 Fingers
  • Severe Trismus, <15 mm <1 Finger

How to stretch

  • Open the mouth against gentle pressure by pressing one hand underneath the lower jaw. Place a finger of one hand on the top front teeth, a finger from the second hand on the bottom teeth and pull the mouth open as wide as possible.
  • Use tongue blades, or stacked blades, to help you open your mouth as wide as possible. (Your healthcare team may also recommend special devices such as TheraBite)
  • Open your mouth as if yawning. Keep it open for 2 minutes. Rest for 1 minute and then repeat.

Read more: http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/trismus/?region=bc#ixzz4voI8bg4T

I asked a surgeon if the expensive Therabyte (which looks like a medieval torture device) is a good option. Here is what he said:

Yes, the Therabite is a good investment. Well organized oral health units may even have some on loan. The Therabite provides consistent measurable mouth opening exercises and is most effective when used at the beginning of radiotherapy and and soon as possible post surgery to maintain rather than regain the range of jaw opening. They can be used when you don't have teeth, too

(The advice is that a passive stretch is most effective. This means that a device such as fingers, sticks or a Therabite are more effective than actively stretching the jaw as in yawning.) 

Is there a surgical remedy for trismus?

Sometimes surgery can lengthen the scar tissue. Usually another piece of tissue needs to be sewed in ( free flap) Again, surgery can create more scarring, so the exercises are super important to stop this from contracting and stopping the mouth from opening ( the scar still happens but the exercises just make sure it is a long scar, not a short one).

If you feel your jaw tightening up, don't be like me, do some basic stretches every day. Ask for physiotherapy if necessary or ask the speech language therapist to help.

Is it still worth stretching years after the treatment?

Physiotherapists have a saying 'use it or lose it'. Make it part of a daily routine. Most oncology departments will be linked to an Oral Heath unit, and the dentists there should be able to provide advice. Failing that, all Maxillofacial Surgeons ( who are both doctors and dentists and trained in surgery) should be able to help.

And here is a nice massage for the jaw joint. The neck exercises we are given during treatment are also useful. More on that later. 

Medical term of the day: jaw hypomobility - that’s the formal term, hypo meaning low or less and mobility meaning, well, mobility. 

But whatever it is called, it is a pain.

(Thanks to the Sloan Kettering website for the illustrations.)

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What is this osteoradionecrosis that hangs over the heads of some patients who’ve had radiotherapy?

I know osteo means bone and radio refers to radiotherapy and necrosis refers to dead tissue so ORN is death of bone due to radiotherapy.

Here is a definition of necrosis.”the death of most or all of the cells in an organ or tissue due to disease, injury, or failure of the blood supply.”

"ORN is most commonly defined as exposed, irradiated, nonhealing bone of at least 2 to 3 months duration without evidence of tumor recurrence."

Don’t freak out though because although it is something to watch out for, it is rare. It affects sections of bone that can be removed if necessary. It’s hard to treat but there are options.

"Osteoradionecrosis is a rare side effect that develops some time after radiation therapy has ended. It usually occurs in the lower jaw, or mandible. The lower jaw is at risk of osteoradionecrosis because it has a limited blood supply. Very rarely, osteoradionecrosis can start in the upper jaw, or maxilla."

Read more: http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/osteoradionecrosis/?region=bc#ixzz4v9azYyCX

Some of our people have had it and with my poor bottom teeth I am at risk. I stress however, that only a small percentage of radiotherapy patients get the condition. Careful treatment can prevent it.

In this blog post I want to explore it and describe it in layman’s terms, using the information from the Canadian Cancer Society website, the Oral Cancer Foundation website and a few others listed below with some of my own experience thrown in for good measure.

A first sign can be exposed bone as in the picture above from the OCF website. http://oralcancerfoundation.org/complications/osteoradionecrosis/

ORN can happen spontaneously but mostly it is caused by trauma to the jaw that does not heal - that trauma is mostly caused by a tooth extraction. This is why patients are given Hyperbaric Oxygen Therapy before and after some extractions because HBO forces oxygen into the tissue and make the blood flow better.

Does HBO work once the bone is necrotic? I have not been able to find a definitive answer to this question but it looks as if it can in the earlier stages. 

What leads to some people getting this condition? Basically it is caused by the amount of radiation as well as some other factors. There's more of a risk if you had over 60 "grays" of radiation.  I have had only 42 grays (at the most) to the area of the mandible where the lower front teeth are on their last legs. Therefore I won’t need HBO for an extraction but there will still be a small risk.

(I wasn’t aware of how many grays I had been delivered until I came to the support group and heard people talking about it. I still had my appointment card and saw, yes, I had had 60 grays in the area where my tumour was.)

My dentist at Greenlane had to ring the radiation oncologist at ACH to find out how many grays were delivered outside the main field though. Patients are not generally given for their map of radiation. It would be nice to have.

Symptoms of osteoradionecrosis (from Canadian Cancer Society)

Symptoms can vary depending on the grade or extent of the osteoradionecrosis and include:

  • pain
  • swelling
  • a sore ... on the jaw
  • difficulty opening the jaw, or trismus
  • an abnormal opening, or fistula, between the jaw and the surface of the body
  • less feeling in the mouth or jaw, or even a complete loss of sensation in the area
  • infection
  • teeth that aren’t aligned properly, which is called malocclusion
  • jaw fracture not related to an accident or other trauma
  • exposed bone inside the mouth
  • bone sticking out through the skin, which is called sequestrum

Read more: http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/osteoradionecrosis/?region=bc#ixzz4v9blScID

Treatment of osteoradionecrosis

Once the extent of osteoradionecrosis is known, your healthcare team can suggest ways to treat it. You will also be given antibiotics if there is an infection in the bone. Other treatment options may include the following measures.

Surgery

Your doctor may need to do surgical debridement. This means removing dead or infected tissue from around a wound. Dead, or necrotic, bone may also need to be removed. This is called sequestrectomy.

Depending on where osteoradionecrosis develops and how far it progresses, your doctor may need to do surgery to help restore the area.

This may include microvascular reconstructive surgery to restore blood flow to the area.

Bone grafts may be needed to replace the sections of the jawbone that are removed. (I have also heard that titanium can be used.)

Hyperbaric oxygen therapy

Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. It is done in a special chamber where the pressure inside is higher than the normal pressure of the atmosphere. The higher pressure allows more oxygen to get into your blood, which can help heal damaged and infected tissues.

Hyperbaric oxygen therapy is used in combination with wound care and surgery. The treatment plan often includes 20 treatments before surgery and 10 more treatments after surgery. This treatment plan may be adjusted based on your personal situation and how well the osteoradionecrosis responds to the hyperbaric oxygen therapy.

Read more: http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/osteoradionecrosis/?region=bc#ixzz4v9cFGJUx

Prevention is better than cure

How can we lessen the chance of ORN occurring?

  • Extraction of potentially troublesome teeth prior to treatment
  • Good oral hygiene. See a hygienist if possible
  • Regular dental checkups
  • Good nutrition
  • No extractions without contact with radiation oncologist about need for HBO
  • Smoking cessation, limiting alcohol

As we know, prevention isn't always possible after radiation therapy. But after researching ORN, I am certainly going to take even better care of my mouth. 

Off to clean my teeth ...

PS

  • The "gray" is a unit of radiation. Most of us had 60 grays over 6 weeks. Adjacent areas like my bottom front teeth, receive less. 
  • The risk of developing osteoradionecrosis increases when the dose of radiation received is greater than 60 grays. It is also higher if the bone treated with radiation is exposed.
  • ORN is not an infection in itself but can become infected. 

The following extract from the OCF page is too well-explained not to append here. 

Osteoradionecrosis develops as irradiation diminishes the bone’s ability to withstand trauma and avoid infection, and it can be facilitated by poor nutrition and hygiene. This process may be spontaneous or result from trauma, leading to non-healing soft tissue and bone lesions, followed by bone necrosis. The non-healing bone may become secondarily infected. All patients who are to receive chemo-radiation therapy should have unsalvageable teeth removed, periodontal health maximized, and fluoride therapy instituted prior to treatment. Osteoradionecrosis is an extremely serious complication for patients requiring tooth extraction after radiation therapy, and the risk does not appear to diminish with time (for the rest of his/her life the patient should never allow a dentist to extract a tooth after radiation therapy without consulting a radiation oncologist). The ability of the bony tissues to heal is compromised by hypovascularization.

Hypo = low, and vascular = relating to blood vessels so hypovascularisation (English s instead of American z) means lower than usual number of blood vessels - not enough blood supply. 

 

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Speaker: Dr David Vokes

Introduction

Dealing with head and neck cancer is about optimising function.

There are three types of dysfunction:

  • Preexisting eg stroke
  • Disease-related. Cancer can destroy tissue, eg vocal chords, bone
  • Treatment - surgery, rads and chemo can lead to dysfunction eg swallowing problems

How to prevent dysfunction:

  • Prevention is best through behaviour modification, eg smoking, drinking cessation or by use of HPV vaccinations for OPC cancer
  • Early detection through patient and physician education, eg doctors need to know that if patient has voice dysfunction for more than 3 weeks they need to be seen, especially if there is history of smoking. Doctors not given much education on this cancer, 3 - 4 hours in medical training. 
  • Careful treatment selection: Minimally invasive surgery, balancing act to get adequate margins plus rehabilitation and reconstruction

Avoiding long term dysfunction by careful use of the three treatment modalities: surgery, radiation and chemo

Radiotherapy

  • Omit and use surgery
  • Reduce dose and use surgery 
  • Use targeted radiotherapy like the IMRT we have had for the last decade, avoiding important structures (10 years ago radiotherapy was not very discriminatory. More like an atom bomb than cruise missile)

Chemotherapy

  • Omit - use surgery instead. It intensifies the side effects of radiotherapy.
  • Minimise it. Avoid triple modality if possible. However, if the cancer has broken out of the lymph nodes as with “extracapsular spread”, the triple modality does have a significant survival advantage.

Surgical techniques

The KTP laser

A KTP laser is a solid-state laser that uses a potassium titanyl phosphate (KTP) crystal as its frequencing doubling device.

This laser differs from the “cutting” laser of previous decades: the CO2 Laser. It ablates layers of tissue. “You keep on going down to get rid of the cancer.”

It’s one treatment and it takes the patient 6 weeks to heal. Minimally invasive.

Indicated for

  • Dysplasia - precancerous, abnormal cells
  • Carcinoma in Situ - a static early tumour
  • Squamous cell carcinoma - you need exposure. Need to be able to reach the tumour.

It is useful for laryngeal cancer in early stages not so much for other head and neck cancers. Avoids the need for a total laryngectomy. Has been in use since 2010. Excellent results.

(Another way of saving the larynx is to use a flap. One patient had a second primary and had already had radiotherapy, could not have it again so was given a gastrointestinal flap, pulled up from the gut. This is called a dynamic flap and still contains muscles that can move.)

Transoral Robotic Surgery (TORS)

https://biomedical.closeupengineering.it/en/da-vinci-leonardo-minimally-invasive-surgical-robot/6724/

Head and neck cancer is increasing in younger patients with the epidemic of tonsil and base of tongue cancer caused by the HPV virus. Traditional surgery was very morbid (caused a lot of dysfunction).

Southern Cross Hospital, North Harbour, has a a da Vinci robot for this surgery. David and his colleagues are putting forward a business case for one in the public hospital. (Does anyone have three million dollars? Diana said that we would help fundraise!)

Traditional surgical techniques are difficult for base of tongue cancer. Using the da Vinci robot, the surgeons feel as if they have been shrunk and are in the patient. They use an endoscope and the camera goes inside the patient. The robot has graspers on what look like human wrists but are more flexible. David and his colleague, Dr John Chaplin have done five cases since August and only one of them required radiotherapy.

Neck dissections are done beforehand then allowed to heal.

The robot was FDA approved in 2000 but head and neck cancer has been a latecomer in robotic surgery.

New Zealand is not behind most of the rest of world but Australia has many more TORS units.

Here is a photo of TORS surgery found on the Twitter feed of @throatsurgeon in Australia. David had photos but I was not quick enough to snap them. It really is extraordinary surgery.

David and his colleague trained in Atlanta and Pennsylvania. Part of their training involved playing games to become familiar with the instruments.

Total laryngectomy

David spoke about the side effects and the rehabilitation when a patient needs a total laryngectomy.

Laryngectomees suffer many issues with the following as well as learning to speak again. These include loss of smell, taste, ability to swim and many more.

Rehabilitation is helped by:

  • Pre-op preparation and reassurance
  • Multi Disciplinary team essential
  • See a veteran laryngectomee

Speech rehabilitation involves:

  • Electrolarynx
  • Tracheoesophageal speech using a valve in the throat. Most efficient.
  • Oesophageal - difficult - swallowing air. One member said that in a group of Japanese laryngectomees he met, all used esophageal speech 
  • Writing
  • Mouthing 
  • Gestures
  • Speech software

Some other points

  • Stoma stenosis or scarring, closing up the stoma can occur after rads
  • Important to look after lungs
  • Resuscitation through throat is needed. Patients should wear a bracelet to show they are neck breathers. 
  • Psychological rehabilitation is needed

David showed us a painting by a patient made years ago - like Edward Munch's The Scream - showed the grief anger and confusion. It must have been very therapeutic to get these feelings onto canvas and would have given other patients a feeling of recognition.

Help and information can be found in Itzhak Dribook’s blog and his book. He is a pediatrician who is also a laryngectomee. http://dribrook.blogspot.co.nz/

Thank you David for your talk. It was technical but informative and it’s reassuring that our people have such committed surgeons who want to maximise the quality of life of their patients.

And a tribute to our many members who are laryngectomees and have taught us so much about how to respond to such a profound change in their lives.

This summary was written by a layperson. If anything is incorrect, please let me know. 

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Group support in Nelson: Friendly Friday

The Auckland group is not the only head and neck support group in New Zealand. The Canterbury Cancer Society runs a group in Christchurch and in Nelson, speech language therapist Emma Burns runs a group for anyone who has had cancer of the mouth or throat. Some people in the group have had their voice boxes removed (laryngectomy), others parts of their tongue, jaw, saliva glands.  

Bernard, a laryngectomee, describes the group from his point of view and mentions the HME, a heat moisture exchanger. HMEs moisten and filter the air (as the nose used to do) for those who now breathe through a stoma in their neck. They improve pulmonary function, reduce secretions, reduce coughing and reduce fluid lost via the stoma.  DHBs around the country have started to fund them.

Bernard's words

I have just got back from a most informative meeting with with the Head and Neck Cancer Support Group Nelson. One which Emma Burns organises every two months.

We had three new people joined to day. There was a most interesting talk, and very good information about lymphoedema, how to handle it; what the lymph nodes are and their relevant functions in the body. Also the importance of skin care and exercising the head and neck after surgery. Exercising the tongue and massaging the inside of the mouth to help the swelling from the lymphoedema.

I found this information most helpful. It was delivered by guest speaker, Yvonne Ferguson, physiotherapist and lymphoedema specialist. A most knowledgeable expert in her field.

Other items on the agenda for the day:

  • Alteration in taste perception in cancer
  • Oral care and access to dentist

As we get to know each other in the group we are all opening up, and there is a very friendly atmosphere. We share experiences and it is a chance for learning and also an opportunity to talk and meet with other people. A lot of smiles.

As for the HME, the general consensus is that the quality of breathing /life is so much better. We have one member that has used a "bib" for the last eight years. He has changed to the Atos system and it has made a big difference to him. Also it does make it easier to voice with a better quality of voicing.

I am only just now getting the base plates to stay on more the 24 hours. I think three days is the expected time. The filters I think need to be changed every day so that your breathing is not too strained. We had a demonstration here in Nelson. I do hope we can have another one on the HME and base plates. The first time I did not know what questions to ask.

Base plates, by the way, are adhesive "plasters" coming in many shapes to fit most neck shapes. They have a ridged nylon ring in the centre to take a plug, an HME which allows you to breath moist warm air. When you take off the white protective cover the are nearly invisible on the skin. It just takes a little practice to get them on right. They make a big difference to the quality of your breathing.

A big thank you to Emma Burns. Her care and hard work in organising this group is invaluable.

Footnote from a Christchurch member We had a session at Christchurch Public Hospital yesterday on using Atos base plates and HME filters. I was the only one wearing one, but it seems I have been wearing the plates for too long and the same with the filters. Will have to alter the frequency of changing them. A very informative meeting indeed. Hope we have more meetings on other subjects concerning throat cancer.

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Surviving Stage 4 Tongue Cancer: Investigator

Steve Woods, on the left with a fellow cancer patient,  is one of our American members from Kansas City, Missouri. He put this story on our closed Facebook page and I thought it was too good not to share. 

Steve's Story

Imagine you are seeing your doctor for the first time for a physical and she feels a swollen lymph node and the puts you on an antibiotic...

In less than a week your neck looks like the hugest case of the mumps you have ever seen....

She sends you in for a CT Scan...

You don't have to wait long for the results because your friend is the radiologist.......

You talk to him on the phone and that's where you find out you have tongue and lymph node Stage 4 cancer.....And perhaps a met to one of your lungs which would leave you with a very poor prognosis.

As soon as you arrive home you get a call from KU Cancer Center scheduling you for multiple appointments....

You have a biopsy of the tongue and lymph node that confirms your diagnosis....

You then are scheduled for a PET Scan 2 days before Christmas.......

A few days after Christmas you are given the gift to find the spot on your lung is not cancer.... Yet it's a healing pneumonia.

You are scheduled for 3 rounds of the chemo, Cisplatin, but are only able to take 2 because of the damage that has been done to your kidneys

You begin Radiation Treatments after they explain to you what you will be going through.

Up until the end of the 3rd week of Radiation you feel pretty good.

It's then and there you start getting blisters in your mouth and are unable to swallow and you lose your voice and you have to use a grease board to communicate.

Pain meds and magic mouthwash become your best friend.......

You have come to the point it's impossible to swallow so you have a feeding tube placed....

The tube feeding formula gives you constant reflux and you taste it 24 hours a day.

Your biggest fear is aspiration.....

You end up being admitted to the hospital twice for renal failure and dehydration......

Finally after the last Radiation Treatment you get to ring that bell three times...... Man that felt good!

Now comes the hard part.

You start with your dietitian and your speech therapist so you can learn how to swallow again because of the scar tissue from the Radiation has made the swallowing you have known how to do your entire life no longer possible.

The first small amount of food you are able to eat which many may think would be trivial is a huge accomplishment to you and those who love you.

You have days where you are too weak and dizzy to walk even the shortest of distance.

The doc tell you that your recovery phase could take 12 to 18 months......

That seems like it's forever!

As the months go by you reach more milestones......

In closing you might ask if this was all worth it?

ABSOLUTELY it was.

I wake up with a huge smile everyday because each day is a gift that I can spend another day with my wife,family and friends.

Last night I got to watch my grandson play baseball.

It was awesome to see him play, fantastic I was still able see him play a game he loves so much.

I'm sharing this to let others know that a cancer diagnosis does not always mean your days are over.

Live life to the fullest and seek treatment and remember you and your family are an important part of your team.

Thank you for telling your story, Steve. It will help others get through the tough treatment.

 

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Pre-empt depression: Wednesday Weekly

The following round up of HNC news comes  from our Northland contributor and includes some quirky conundrums from Shower Thoughts. 

Getting over the physical side of cancer is, unfortunately, only part of the battle. There are going to be psychological effects with depression a likely intruder. Medication can usually alleviate the condition to a large extent and today’s lead article discusses when those extra pills should, or could, be introduced.

Meanwhile:

  • The problem with the modern medicine is that instead of extending our youth it extends our old age.
  • If your crystal meth dealer has all of their teeth, they’re probably the cops.
  • At some point, shopping at antique stores became less “wow, look at all the cool old stuff” and more “wow, I used to have this.”

Should people without depression take medication to prevent it?

(U.S.) If you were at risk for developing depression, would you take a pill to prevent it?

For years, physicians have prescribed antidepressants to treat people grappling with depression. Some people can benefit from taking these medications during an acute episode. Others with a history of recurrent depression may take antidepressants to help prevent relapses.

But researchers are studying a new use for these medications: to prevent depression in people who may have never had it before.

It has long been known that people with head and neck cancer are vulnerable to becoming depressed. These types of cancers can impair functionality at the most basic levels, like speaking or swallowing. Treatments, such as surgery and radiation, for these diseases can be debilitating. Some studies have estimated that up to half of patients with head and neck cancers may experience depression.

A group of researchers in Nebraska examined what would happen if non-depressed patients were given antidepressants before receiving treatment for head and neck cancer. Published in 2013, the results of the randomized, placebo-controlled trial were startling: Patients taking an antidepressant were 60 percent less likely to experience depression compared with peers who were given a placebo.

In medicine, this approach is often referred to as prophylaxis, or a treatment used to prevent disease.

Prophylactic antidepressants have shown promise in other high-risk patient populations as well. A meta-analysis published in 2014 found that prophylactic antidepressants cut down the incidence of depressive episodes among people receiving therapy for hepatitis C by more than 40 percent. Randomized trials suggest that patients who take antidepressants early after a stroke experience significantly lower rates of depression. Small studies have also found that people receiving treatment for melanoma may be less likely to develop depressive symptoms if they are pre-treated with antidepressants.

These findings provide compelling reasons for physicians and patients to consider using these medicines to preempt mental-health issues. But this experimental frontier — which relies on prediction and prevention — is controversial.

Full story:

https://goo.gl/9aVxp8

Make Sense Campaign: Celebrating its 5th Year Across Europe

(BRUSSELS), Head and neck cancers can be debilitating and their aggressive nature can affect up to eight areas of the head and neck. It's the 7th most common type of cancer in Europe with more than 150,000 new patients diagnosed every year. Men are two to three times more likely to develop head and neck cancer, although the incidence in women is increasing. Being able to identify early signs and symptoms is crucial to survival, as 80 - 90% of head and neck cancer patients diagnosed and treated in the early stages survive. Awareness among the public remains poor despite a marked increase in those surviving following early treatment; however, overall patient outcomes have not yet improved accordingly and more efforts are needed.

"Head and neck cancer is a complex disease, and through the Make Sense campaign we unify and stimulate the head and neck community in Europe to continuously work towards better outcomes for patients," said Professor René Leemans, President of the EHNS and Professor and Chief of Otolaryngology - Head and Neck Surgery at VU University Medical Centre, Amsterdam. "We recognise that newer additions to the treatment landscape offer great hope, although, we must be mindful that supporting patients who survive this aggressive cancer requires an equally determined, long-term, multidisciplinary approach."

Activities are taking place this week across Europe and focus on providing credible, up-to-date information on head and neck cancer to help ensure optimal diagnosis, treatment and survival care.

To find out more information about activities taking place, please visit: http://www.makesensecampaign.eu and click on the interactive map of events

Full story:

https://goo.gl/hhMrgn

Drug combination may improve impact of immunotherapy in head and neck cancer

(CALIFORNIA) Checkpoint inhibitor-based immunotherapy has been shown to be very effective in recurrent and metastatic head and neck cancer but only in a minority of patients. University of California San Diego School of Medicine researchers may have found a way to double down on immunotherapy's effectiveness.

In a paper published in the journal JCI Insights on September 21, researchers report that a combination of toll-like receptors (TLR) agonists -- specialized proteins that initiate immune response to foreign pathogens or, in this case, cancer cells -- and other immunotherapies injected directly into a tumor suppresses tumor growth throughout the whole body."The mechanism reverses the phenotype of a tumor by changing its inherit properties to make the tumor more immunogenic," said Ezra E.W. Cohen, MD, professor of medicine at UC San Diego School of Medicine and associate director for translational science at UC San Diego Moores

Cancer Center and senior author on the paper. "In this study, the combination of immunotherapy drugs resulted in the complete elimination of cancer cells and even when re-challenged the tumors did not recur."

Full story:
https://www.eurekalert.org/pub_releases/2017-09/uoc--dcm092117.php

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We are Stardust: Friendly Friday

 Laughter as medicine

“You can’t lie to radiologists. They can see straight through you.”

Okay, that’s a weak joke and you've heard it before but your lips turned up at the corners, didn’t they? You couldn’t help a small smile. The weight of the world shifted from your shoulders just a little bit.

This Friendly Friday is about the things that gladden our hearts like humour and that dreadful cliche “positive thinking” which I’ve spurned and then returned to at various times in my life. (I now think there’s something in it - a lot in fact.)

 About humour. After my first and worst cancer diagnosis, I had a young son still living at home. We were terrible as a family at talking about the threat to my life and teenage boys are pretty monosyllabic anyway. However, every Tuesday he forced me to sit down and watch three back to back comedies on TV2. (It was a long time ago.) I remember one of them was the sitcom Ellen Degeneres was in before she got famous and had her own show. I couldn’t help laughing and the humour did a lot to lighten the load.

There’s a guy writing a series on Stuff called a A Mild Touch of Cancer .  His is a serious cancer for which he is now on his second round of chemo. He’s a comic writer and tells his story in a wry, self-deprecating way. 

https://goo.gl/p7jmJ6

I admire his courage and think the writing process and his humour does a lot to keep him on track.

I don’t want to suggest that humour is suitable in all situations but I think it helps us look at ourselves in a compassionate manner. Laughter is great for getting us out of our self-absorption, something that is totally understandable but which can drag us down.

Real health benefits? For the heart there might just be. 

https://goo.gl/rr7g6w

The power of positive thinking?

Positive thinking is another way of shifting our brains from anxiety to more salubrious thought processes. No, I don’t think it can make cancer cells shrivel up and die although funnily enough positive thinkers do better in some studies. I guess they stick to their treatment and look after themselves better.

Adopting a more positive outlook is fantastic for our coping skills but it's harder than people think. 

It doesn’t work if people are beset by deep anxiety or clinical depression. It can be taught by psychologists, though, and for many of us, it is just a cognitive shift, a veering of our thinking into different channels.

This Mayo Clinic piece is fantastic.

https://goo.gl/hj2Jd4

It is about stopping the negative self-talk that is the opposite of positive thinking. It looks at choosing optimism as a way of handling stress. Believe me, I know how hard that is but it’s worth considering. Here’s an extract.

 “Indeed, some studies show that personality traits such as optimism and pessimism can affect many areas of your health and well-being. The positive thinking that usually comes with optimism is a key part of effective stress management. And effective stress management is associated with many health benefits. If you tend to be pessimistic, don't despair — you can learn positive thinking skills.”

I've always been against artificially forced positive thinking, though.  "The problem with positive affirmations is that they operate at the surface level of conscious thinking and do nothing to contend with the subconscious mind where limiting beliefs really live." We need to dig a bit deeper to change our thinking. And maybe get help. 

https://goo.gl/tLYBJa

But  just remember. We are stardust. It’s true.

https://goo.gl/DAQk73

 

 

 

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What is HBO like? Thursday Investigator

Dunedin member Sue McDonnell who had tongue cancer a year ago was offered hyperbaric oxygen treatment in Christchurch to help heal the recurring ulcers in her mouth. HBO is usually given to head and neck cancer patients who need dental extractions but it is also good for other problems with healing. There is more information under the article.

Sue tells her story here.

I did four weeks of HBO. It was an interesting experience. The staff were great and I felt privileged to be able to do it even though it was hard being away from home.

I was in the chamber for two hours every day Monday to Friday. Going down you get quite warm. Can't remember the physics of this but some will know. They take you down quickly in 10 minutes so you constantly have to equalise by blowing gently with nostrils closed. Similar to diving.

Going down quickly was definitely the worst part but it got easier and one nurse suggested having little sips of water all the time over the 10 mins which I did and it helped a lot to keep my ears popping. You get used to it after a few days and just try and remember to sip water and breathe slowly.

When you get down to 14 metres, you wear an oxygen mask for two hours. They let you take it off for 10 mins after one hour for a quick toilet break and drink. The unit is still down at 14 metres so the toilet is next door and pressurised behind a big heavy door.

Then it’s oxygen mask back on for another hour. For the last 30 minutes you come up gradually and during this time it gets very cold so they wrapped me in blankets. I was worried about catching a cold as I knew I would never be able to do the dives with a cold as my sinuses would hurt so badly. I got through with no problems but was always conscious to stay away from anyone that had a cold.

The pyjamas and red socks that I had to wear every day were for safety. You couldn't wear anything flammable so they had everyone wearing the same thing so it wouldn't be a fire risk. It's very flammable in the chamber because of the 100% oxygen you breathe in. They are very cautious. Every day they check: no cell phones watches etc allowed. You need a good book as all you can do is read.

There was always a nurse in with us and usually two or three patients with other problems such as prostate cancer radiation damage or leg ulcers that wouldn't heal conventionally. There many positive reports of how great it is for healing. The staff were great and would go out of their way to accommodate us.  If anyone has the need or the opportunity to have HBO, they have nothing to lose , except the time factor. 

They say we may not see any results for three months and can still get good results up to five years. I have noticed the ulcers on the side of my tongue heal more quickly now. They used to be there for months and now heal in a few weeks, so that's great. But they keep coming back.

I am really hoping it will help saliva to come or at least improve it but they give no guarantees. I have had a slight improvement so far.

I am hopeful I will still see benefits.

More information

http://headandneck.org.nz/news/thursday-investigates?context=tag-waitemata+dhb

http://www.hbot.com/faq

Thank you to Sue for letting me interview her on Messenger. I hope this is an accurate record.

 

 

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After my cancer treatment three years ago I was living alone in a new town, looking for ways to give back and to connect to my community. Like plenty of cancer survivors and carers before me I volunteered to help at the local Hospice. 

What  sticks in my mind about my Hospice volunteer stint is a conversation I heard during the three-day orientation course. We were addressed by a spiritual adviser. This’ll be good, I thought. I love a bit of philosophising. After all, he had a generic title; he wasn’t a chaplain.

He talked about how he comforted dying patients. Great. I’m going to learn a lot here. But I was taken aback when the conversation took a religious turn. He was a devout Catholic and he and the volunteers’ manager assumed that everyone was on the same religious page. They said that most people reach for God and an afterlife when they are dying. Hmmmm. They should know; they work in a Hospice.

This was a bit difficult for me because I’d been a proud atheist for most to my life. And a sceptic with a capital S too. Was Hospice not for me if my cancer came back and I was dying? Where do atheists go?

I think I overreacted. The conversation was channeled a certain way by the interactions between the spiritual advisor and the manager to give the impression that a belief in God was essential to coming to terms with death. And everyone was nodding in agreement because it was a groupthink situation.

The 2013 census shows that 41% of New Zealanders have no religious faith. That is of the people who ticked the “religion” box on the form. (I thought it would be more.)  

(Many other societies are less secular and have more churchgoers than New Zealand does.)

I doubt if everyone converts to a religion as they face death but of course I could be wrong. Or it’s possible that those who face death with some equanimity have a sort of personal philosophy that helps them on their way though - just not as black and white as God and heaven and hell.  

I think the comfort we humans get from religion can be extended to any belief or thought system that makes us feel connected to the world, to nature, to other people.  It’s an attitude, a perspective, a love, a joy,  an ability to see your own “slings and arrows of outrageous fortune” as part of the larger workings of the universe.

It’s a way of zooming out and seeing your struggling self as part of one huge interconnected whole. The little poem by Edward Thomas at the foot of the article shows this. If we are forced to slow down - a funny name for a train station, a quiet rural moment - we can sense those interconnections.

Sometimes that attitude is dressed in traditional religious robes and sometimes not. I’m sure the Hospice is good for people of all beliefs or non-belief systems. I needn’t panic

Without that sort of “secular spirituality” if you could call it that, I would have found it hard to cope with 10 years of on again, off again head and neck cancer. It’s hard to roll with the punches if you don’t have a sustaining philosophy or belief system, a sense of purpose, a strong inner life. Family and friends are great but they can’t suffer the illness for you. I think people need their own sense of purpose and meaning, a connection with a larger reality gained through religion or meditation or nature or art or a deeper than usual sense of family and community.

It’s easy to talk about the principles of this sort of secular spirituality but harder to really live them. Yoga, meditation, music, art, nature, mindfulness all help. Exercise helps if we are able:  fitness, walking, running, swimming, the gym. Literature is inspiring. Even self-help books, heck, even “positive thinking” which I used to mock but which I have now come to appreciate. Lifelong learning helps.

And finally, helping others. There’s nothing like deliberately setting out to help others to keep you connected and give you a sense of purpose.

Some links:

Books that deal with finding meaning: https://goo.gl/6gj9cM

Statistics about religious affiliation in New Zealand: https://goo.gl/osTSBS

A secular blessing written by Celtic philosopher, John O’Donohue, whose website is worth looking at. https://www.johnodonohue.com/I have a soft spot for blessings and tried to write one for us last Christmas.

jd blessings.jpg

And finally the little British poem Adelstrop, beloved by English teachers, written by Edward Thomas, who was killed in WWI. Other people think it’s about the peace and beauty before the storm but I think of all the birds singing all over England as just a symbol of a beautiful  interconnection.

adlestrop image.jpg

 









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DHB Dental Care for HNC: Investigator

We were told at the last Auckland meeting that head and neckers were eligible for one episode of care by specialist dentists after treatment. In Auckland there is a service that spans ADHB and CMDHB called Oral Health with clinics at Greenlane, Middlemore and elsewhere. Aucklanders, as I have said before, have complained, lobbied and complained some more about the lack of long term surveillance of their radiation-affected teeth. 

What about the rest of the country? So far I have found that some other DHBs offer more. I'm writing here about dental care, not prosthodontic care. More on that later. 

My information comes mainly from fellow patients. I have information from two DHB dental departments: Canterbury and Nelson Marlborough.

If we start from the south, we have little information so far, apart from the fact that you can get a $300 pre-treatment dental check up at the Otago Dental School and that in Invercargill you have to ask to be seen after treatment and then will be checked six monthly. More information will no doubt be available soon.

Canterbury seems to set the best example with three to six monthly checks after treatment with products supplied and a two to three year duration of this surveillance. 

It looks as if West Coast gives two years free surveillance and offers co-paid care after that. 

Nelson Marlborough offers post rad follow up for up to five years. 

No news from Wellington and Palmerston North, a long wait in Bay of Plenty and nothing so far from Waikato.

A recent patient from one New Zealand DHB was told she would get free dental care for the rest of her life.

Auckland we know about and Northland, where we have many members: is, well, very promising. Generally patients are checked at the hospital every 3 to 6 months and root fillings are also provided while Auckland does not provide these. Not all Whangarei patients have been referred to this service. Maybe it is up to the discretion of the clinician treating the patient?

Why does it matter?

  • Expert care: hospital dentists see special needs patients all the time so have become skilled at treating difficult mouths. Two of us had troublesome dental pain that was actually caused by inflammation due to food stuck along the gum line. In both cases it took a specialist dentist to figure it out and recommend the vigorous use of inter-dental brushes. 
  • Cost: you need a lot more care after radiotherapy and many of us just can't afford this. One patient said it cost $400 every time she went to her dentist and fillings often fell out. Her root filling by a private endodontist cost $1500. 
  • Risk: if teeth aren't cared for, isn't the risk of osteoradionecrosis worse? If all teeth are lost the patient can be more socially isolated. Quality of life declines. 
  • Education: specialist dentists and hospital dental departments are uniquely qualified to teach us how to prevent rampant post-rad dental caries. 
  • Natural justice: Dental care availability according to where you live in New Zealand seems to go against every rule of natural justice. We ALL pay the same taxes.

We hope that the recent review of Northland/Auckland head and neck cancer services will lead to Auckland getting more funds to help us. After all, Auckland has to deal with tricky cases from around the country as well as their own people. 

Next year's work on the national Head and Neck Cancer Standards might expose this inequity in the system.

DHBs spend many thousands fixing us up during treatment; it's counterproductive not to keep us as healthy and functional as possible afterwards. Geography and post-codes shouldn't give some citizens advantages over others. 

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Before my most recent head and neck cancer experience, I thought Botox was the ultimate symbol of 21st century decadence: a fixation on appearance and everlasting youth. But I'm a hypocrite because I would have grabbed the  chance to have it for my crows feet if someone had offered it to me free. It's very expensive, costing maybe $500 an injection. (This has not gone through the fact checker.) 

Now I find that Botox is a useful treatment for a range of truly unpleasant disorders as you can read in the Time article below. 

For me it is a partial solution to an embarrassing problem: drooling. My saliva supply fluctuates. Some days I have far too much and some days my mouth is dry. On the former days I have to keep wiping the saliva away from my lower left lip. I've lost the branch of my facial nerve that controls that lip and everything dribbles out, food, drink and saliva. I have to have a series of cloths with me constantly. 

During a bad patch, someone suggested Botox and I was duly booked into the Procedures Clinic at Auckland City Hospital. I was injected into each parotid gland in front of the ears - the largest salivary glands. This is not to stop the production of saliva but to slow it down and it seems to work for three months or more. I cancelled the last three monthly appointment because I was getting thrush and thought the dry mouth was contributing to that. Now I'm back to dribbling and hope to have the injections next week. 

The funny thing about the drooling onto the numb skin below the lip is that it feels so much worse than it really is. The paralysed lip and surrounding area must have some residual feeling that makes me acutely aware of the moisture. I've been told not to keep putting my hand to my lip because it draws attention to it but, well, what if there really is lots of saliva falling down my face? 

Botox seems to be used for a number of conditions suffered by head and neckers. More about this at a later date. It's a Friendly Friday issue because something that seemed frivolous has many practical and useful applications!

Here are some links:

http://time.com/4623409/botox-drug-treating-everything/

http://www.ascopost.com/issues/november-25-2015/the-role-of-botulinum-toxin-in-head-and-neck-cancer/

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Succour in nature: Friendly Friday

Succour means "assistance and support in times of hardship and distress". Spelled "succor" in American English. Not a word I would use much but one I felt was right for this Friendly Friday.

Looking at our Facebook group over the last few weeks, I was struck by how many people find support in nature when times are tough. Below are some photos taken by members and posted on our page. Most are from New Zealand, one is from the US, one is from Australia and only one doesn't show a soulful natural scene. It shows a pet which might just lead us into next week's Friendly Friday. 

This is Olwen's pic of vineyard in Marlborough.

Here is the photo of Steve's farm lake in North America

My local beach in the early morning when people take their dogs for the first walk of the day

Susan's Northland walking beat.

Sharon's view of the Kaiwaka River in Northland

Olwen's lone tree on a country road.

And finally, Julie's little dog, Bruno. 

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Making the move from passive patient to active member of a cancer support group (with a touch of advocacy thrown in) has dropped me into a sea of confusion, especially in regard to oral health in New Zealand.

In the immortal words of Donald Trump,”Who thought (dental) health care would be so complicated?”

There are things we know and things we don’t know.

New Zealand has 20 district health boards so it’s going to be pretty tough finding out the latter. I might be gone for some time in the process of investigating. Let this be the first step in the next round of inquiry and advocacy.

What we know

  • Radiotherapy harms the teeth because it reduces the quantity and quality of saliva. Saliva continually builds up the teeth. A number of people will suffer rampant dental decay without close oversight.

  • There are some warnings about this when we have radiotherapy but they are not adequate in all parts of the country.

  • Radiotherapy reduces the blood supply to the jaw so that bone death (osteoradionecrosis) is a small but significant risk especially if teeth are extracted and the socket does not heal. HBO is necessary.

  • Hospital oral or dental departments offer a varying number of follow up visits for post-radiotherapy patients. ADHB offered one visit, upped it to a year and is now back to one episode to restore “functionality”. Funding is inadequate.

  • People who lost teeth during treatment get plates and dentures made in some parts of New Zealand if eligible. ADHB - yes - but the system is overloaded.

  • People who are “tricky” like me, after multiple surgeries and radiation are seen for longer and might be in and out of the service but it is hard for us to gauge our eligibility.

  • The service can be excellent in an emergency. There are very skilled and expert clinicians.

  • The Auckland Support Group has agitated for long term funded dental surveillance for decades but have got nowhere. In the nineties they sent a petition and letter to the Minister of Health. The answer was as always, “It’s up to your local DHB.”

  • Members in Southland, Waikato and Northland have also had to be the “squeaky wheel” to get post-radiation dental check ups. In spite of the real dangers of osteoradionecrosis, there does not seem to be a clear pathway for head and neck patients to receive expert follow up from a special needs/oncology dentist.

  • Head and neckers might be older, unable to work and really struggle to pay for dental care such as root fillings which can be $1500 each from a private dentist

  • At $100 a pop, your local dental hygienist is expensive but she might be the best chance we have of staving off tooth decay and gum disease and is cheaper than having to see a private dentist frequently. We need to be seen three times a year, so it is costly.

What we don’t know

  • What do other countries do?

  • What facilities are offered by the 20 DHBs in New Zealand? Are there big differences?

  • What are the eligibility guidelines around plates, dentures and implants? Is the aesthetic function considered important in our health system?

  • Other counties use fluoride trays for post-rad patients. New Zealand? Are we getting the best advice about care of our teeth post radiation as we go on?

Conclusion

Dr Kim Gear is working on a project in Auckland to facilitate the healthy survivorship of head and neck patients.

ADHB and NDHB head and neck cancer services have been reviewed. Eventually a report will be released which will include an evaluation of dental services in the region.

We seem to be operating in one of the many sectors of the health system where short sighted underfunding is possibly contributing to bigger expenses down the track. It would make good sense to put more money into people’s oral health right from the start rather than letting them develop serious complications later: complications like needing HBO or jaw replacement.

This is a fertile field for advocacy.

Some additional info

Dental services funded for adults (Ministry of Health)

A limited range of dental services are funded for some adults.

  • People with disabilities or medical conditions such as mouth cancer may be referred to a hospital for their dental treatment by their usual dental practitioner or GP.

  • People on low incomes who have a Community Services Card may be able to get emergency dental care, such as pain relief or extractions.

These services are provided by public hospitals or dentists contracted by your district health board. You may still need to pay some of the treatment cost.


Oral care of head and neck cancer patients (Provisional MoH Standards)

On discharge following cancer treatment, patients receive appropriate oral care, including:

·       advice on the need for regular, ongoing, professional oral care

·       advice regarding future oral and/or maxillofacial prosthesis care

·       advice regarding future dental extractions

·       assessment of their circumstances and functional needs 

and other health care professionals are advised regarding the patient’s oral and/or maxillofacial prosthesis care needs.

9.9 Where possible, a patient returns to their own dentist for continuing care. If private dental care is not a realistic option, and where finance and facilities are available, appropriate, affordable, sustainable oral care and maxillofacial rehabilitation are offered.

Please comment. There is a forum about dental care on this website. If I have made errors (I'm just a patient), please let me know. 


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We saw it play out on RNZ and elsewhere: a war of words between John Campbell of Checkpoint and the Minister of Health about prostate cancer waiting times. Eventually there was an apology from the Southern DHB!

The embattled minister also told a group of bemused cancer charities that New Zealand's health system was the envy of the world. "You just have to look at all the Givealittle pages to see that's not true," said one commentator. However, a Stuff investigation finds that New Zealand does rank quite highly but not in all areas. 

Finally a hopeful story of how a man survived cancer 8 times and now wants to pay it forward. 

http://www.radionz.co.nz/news/national/337025/southern-dhb-sincerely-sorry-for-patient-wait-times

https://www.stuff.co.nz/national/95677661/ministers-boast-kiwi-health-system-envy-of-the-world--well-yes-and-no

https://www.stuff.co.nz/life-style/well-good/inspire-me/95650126/beating-cancer-eight-times-phil-kerslake-creates-new-path

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The Swallows Book

This book was the original concept of Chris Curtis, chairman of the Swallows Head and Neck Cancer Support Group in the UK and World H&N Cancer Ambassador. In his chairman's report inside the front cover he states that:

Head and Neck Cancer patients have unique problems such as dry mouth, swallowing, eating and many other issues. It is so important worldwide that we come together as one voice and share our experiences to help others. 

Chris originally produced a book for UK people affected by head and neck cancer but in the last year the book has been adapted to suit Australians and New Zealanders. This Australian edition still has some stories from the UK but is mainly packed full of Australian content with three pages from us, here in New Zealand. A page about our network, my story and that of Liz Gray from Invercargill. 

The Australian connection was supplied by Marty Doyle (Brisbane) of Head and Neck Cancer Support Australia and Julie McCrossin (Sydney), media person and patient spokesperson for the Trans Tasman organisation called Targeting Cancer. Marty asked us to make a contribution which is quite exciting (we're in a book!) but the Australian content itself sounds so close and familiar that there is plenty for us to relate, to. 

Each story is one or two pages. Here are some of the headlines:

  • Bravery Unmasked
  • The Big C Picked Me
  • Coping as a Carer
  • You've been great thanks 

All the stories have a positive twist but you can feel the pain and trauma that people have been through. It's a 66 page catalogue of early warning signs, a collection of coping strategies and has one of the best explanations of HPV cancer I've read. (Pages 56 and 57).

How did the support organization fund the book?

They received funding from a company called Link Health Care who have recently joined the Clinigen Group. Below is their mission statment.

Together we are dedicated to ensuring patients across the world with rare cancers are able to access the treatment and supportive care they need.

This a picture of me receiving the books from Carlene of Link Health Care

Here are the pages on which our members appear:

  • Marty Doyle pg 5
  • Julie McCrossin pg 26
  • Our support group pg 44
  • My story pg 46 
  • Liz's story pg 51

I can't stress enough how useful it is to have these stories and articles and how moving it is to hear about other people's experiences. Types of head and neck cancer include HPV throat cancer, tongue cancer, larynx cancer and the rarer adenoid cystic carcinoma which at least two of our New Zealand members have been diagnosed with. 

You can download the book online:http://www.juliemccrossin.com/TheSwallows.pdf

If you would like a hard copy you can email me your address headandnecknetwork@gmail.com and pay $5 into our Kiwibank account.

 38-9017-0819902-00

Sorry, but I can only send them within New Zealand. (Marty or Julie can be contacted for Australian copies.) I use a courier service called Pass the Parcel which costs $4.95 to all corners of Aotearoa. The book is free. 

When I was a high school teacher I tore my hair out at the end of every year because I was the school magazine editor. I had to cajole all the sports team captains to write a report and would often receive them scribbled on the back of the daily notices. Then some stories were too long and had to be cut down. Looks as if the head and neck patients and health professionals have been more cooperative but it's much harder making a book than you would think.

I want to thank Marty for his great collection of relevant material!

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Monday News: 31 July 2017

Next meeting is this Thursday, 3 August, 9.30 at Domain Lodge.

As stated before, we will have Dr Neil Croucher of Oral Health as our main speaker via teleconference. The subject will be the eternal problem of post treatment dental care. Oral medicine specialist Dr Kim Gear will be present at the meeting. 

We will also report back to attendees about World Head and Neck Cancer Day last Thursday and about the patient care packs we hope to provide for newly diagnosed patients on a regular basis. 

Thank you to Waitemata DHB and Dr David Grayson for hosting our stall at North Shore Hospital. The stall was a glorious mix of patients, carers, surgeons, nurses, other hospital staff members and an industry rep - all working together for a good cause. It was our first stall so was a learning experience. Tammy, David G and I set it up and we had a band of volunteers: Judy, Mac, Earl, Jill, David S and Alison with Cara there for layngectomees. Supporting us online were Diana and Olwen.

The burgundy and ivory balloons were purchased by me, blown up by Tammy and later used as a letter box sign for my seven year old grandson's birthday party. We're all in this thing together. 

We are grateful to those people who have donated to our cause. Donations are also trickling in from clinics which held fundraising events for our benefit. Our chair, Diana Ayling, must be mentioned here. It was her vision that spurred us all to mark the day in Auckland, to raise awareness and raise money to help head and neck cancer patients. Similar events happened in Christchurch, Nelson and other parts of the country. 

Hope to see some of you this Thursday.

Maureen

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Imagine going into theatre for urgent cancer surgery and the reality of it suddenly hitting you. Imagine the kind anaesthetist singing you sleep.

This is just one of the acts of kindness, above and beyond the call of duty, experienced by our members during treatment. (I don’t think singing is taught at medical school.)

Then there's the speech language therapist who motivated, cajoled and encouraged a patient who’d had tongue and larynx surgery. “She was an awesome problem solver too. Her analogies of biking through tunnels on the Coromandel and being half way through, so keep going towards the dim distant light. No turning back. Persevere through.”

Following are some more quoted comments:

“I remember the moments before going under general anaesthetic for a biopsy of my tumour. A scary place on the operating table. I remember one of the assistants holding my hand in the final stages of preparation and I felt comforted in the count down as you go under. It felt reassuring in an unfamiliar environment.”

“There was a doctor who was at the local hospital when my partner died. Not one I'd ever seen. He had a turban and beard so possibly Sikh. I had just arrived back, and this doctor was checking for a pulse, and put his arm round me and said, "I'm so sorry."

“An expert was called into to insert a cannula when no one else could do it. He was a skilled young Filipino chap and said that living in New Zealand was a blessing and he wanted to confer that blessing on his patients. He got the line in no trouble.”

“The nursing staff have been models of kindness. Little things like brushing your hair or connecting the charger for your phone when you can't reach.”

“Every day for the best part of six weeks, I would walk from Ranui House up to the Christchurch Hospital for radiation treatments. I always had to take a seat by the hospital reception desk before I went down the long "daffodil" walk to radiation. There was a very kind receptionist who went out of her way to help me. The compassionate conversation and the way she put her hand on mine it was a comfort I shall never forget.”

“I remember not long after my treatment. I drove to the library and when I was there I really needed a drink of water badly. Yep, I had forgotten my water bottle which as many of you know we don't go anywhere without. I asked the librarian if there was a water fountain and he said no there isn't and then he asked me, “Can I get you a glass of water?” He went away to the staff room and brought me back a large glass of water. A simple act of kindness which meant a lot to me. He had no idea he was providing much needed water to a person in the early stages of cancer recovery.

We recall a lovely young nurse in ward 74 having the intuition to realise that a few days of staring at an internal view of the hospital might cause a bit of cabin fever in the country boy.
"Would you like to change rooms?” she asked him.
“I'd love to see the sky," he replied.
And just like that, bed, cupboard, pole and paraphernalia moved across the ward to a view of Park Road and beyond. In the small hours when sleep eluded him, he looked out to the night lights, a changeable sky, stars and even a winter moon. A little gesture, but it made his hospital stay much more bearable.”

Kindness is something that shines like a candle in the dark memories of gruesome cancer treatment.

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