Support Network Newsletter Volume1, No. 7 June 2, 2016
This Month’s Meeting
Top Ten Things Learnt by a Health Psychologist
What are the top ten things psychologist Anna Griffiths learnt during her time with the Cancer Society in Auckland? She spoke about what she had learnt, not about what we as patients need to learn. She gave us an insight into the practice of a psychologist.
- Everyone copes in different ways.
- Meds can impact on emotions and might need to be adjusted.
- Distress is okay. Be comfortable in the presence of distress.It is a normal response to pain.
- The value of connection.
- Finding balance between tension and distraction.
- The extent to which what is going on physically can impact on us emotionally.
- The importance of looking into the whole picture: social life, family, friends. How does this impact on perceptions of cancer?
- The power of just listening.
- How fragile and precious life is.
- How resilient and adaptive people can be. It is a privilege to be a witness to that.
The following issues came up in discussion with Anna afterwards:
- There’s a pattern of distress with peaks at certain times. Peaks are at diagnosis and at the start of treatment. During treatment it settles down while the patients is being looked after only to come back after the end of treatment when the patient is suddenly alone again. This is when the patient starts to process what he/she has been through and what it all means.
- There are five psychologists at Domain Lodge. It’s very easy to get an appointment. You can ring 0800 CANCER or ask your GP to refer you.
- Remember Daffodil Day, said Diana. The wonderful services at Domain Lodge are funded through fundraising like Daffodil Day and by donations.
We want to wish Anna well in her move to Melbourne.
Patient Story
Last time you read Elizabeth’s story about her jaw reconstructive surgery after difficulty receiving a diagnosis. This time Elizabeth writes about her ongoing struggles with side-effects. This account is very recent. I think a lot of our longer term survivors will identify with her account.
It's hard to believe that I'm still here and we are going on our 6th Annual San Antonio Oral Cancer Awareness Event here in a few weeks. I will tell you, it has not been easy over the years but with GOD's grace I'm still trucking along.
You all know my story by now and yes, although I beat the dreaded "C" word - Praise GOD - let me tell you that no one can ever be prepared for the post cancer treatment aftermath that this disease can cripple you with. It's a daily struggle feeling sick on the inside while you look fine on the outside, I try to hide it as best as I can because after all, I'm supermom!
But let me be honest, this past year has been hard. I have dealt with more setbacks than I ever imagined. I have continued to struggle with Chronic Fatigue and Thyroid Issues but within the past 18 months or so I have been diagnosed with Cardiogenic Syncope due to radiation damage to my baroreceptor in my carotid artery. I suffer from almost daily leg and hip pain; let's not forget about the ongoing dental issues I have to endure. Over this past summer, I had my esophagus stretched due to the increasing choking episodes I was experiencing causing Marcin Sikon to perform the Heimlich Maneuver on me weekly. The procedure helped minimally and doctors reported that I would not be a candidate to have it repeated as the risks are too high vs the benefits. Prolonging being forced back on a feeding tube is what I am trying to keep at bay for now.
I tell you all this because awareness NEEDS to be brought to this disease. Everyone remembers the fight someone goes through to beat cancer but years pass and the memory fades yet the struggle may still be there and no one knows. Never did I imagine at the age of 29 I would suffer from a rare form of Oral Cancer and at Stage 4 with a 19% survival rate nonetheless. What did I do? What could I have done differently? Why didn't I know what to look for? Don't let that be you! Let's raise AWARENESS TOGETHER and Give Oral Cancer A Voice!
Elizabeth Garcia Sikon
Stay connected with us
From now on, you can subscribe to our website and be up to date with our latest posts. All you need to do is go to our site: http://headandnecknetwork.blogspot.co.nz/, go to the Follow by Email box, enter your email address and press Submit. You will receive a verification email. Be sure to click the link and you will receive our regular updates. Strategic Planning for our Support Network
Diana gave us feedback on the little surveys we had done about things we valued and things we wanted improved about our care.
- Nursing care was excellent. How do we say thank you to the nurses in Ward 74 and cancer liaison nurses who come to visit us? We will ponder this further.
- We did well. We managed. We’re here. Give ourselves a pat on the back.
- The radiation therapy team was also praised. How do we acknowledge that?
- Quality of information. Here improvement is needed. Although everyone is different and people need info at different stages of the journey, patients seem to yearn for better information. Someone said that, “If we had been better informed, we would have been better prepared.”
- Dental care is a problem for many.The need for improvement can be divided into two categories: care for the existing teeth and reconstruction in the form of dentures or implants.
- Psychological support. More needed. We’d like a psychologist attached to the Multidisciplinary Team.
Vision, values and priorities
We need to sort these out as we approach incorporation.
Priorities
We came up with three issues we can address right away
- Neutrafluor toothpaste is $25.00 in pharmacies but some dentists sell it for $16.00. Maureen will investigate an application to have it subsidised.
- Green mouth washing swabs (also known as foam toothbrushes). We will ask Vicki if some can be made available at our meeting for people to take home. They are hard to buy and useful for cleaning the mouth after tongue surgery.
Waterpiks. These are expensive ($215.00) but some head and neck patients find them an excellent investment. They are available from http://www.smilestore.co.nz/ which is located in Mairangi Bay.
- Thank the nursing staff. Someone suggested writing to ADHB’s magazine, Nova, where there is a section for “applause”: http://www.adhb.govt.nz/documents/NOVA_Feb-Mar_2016.pdf
Strategies
We came up with three strategies:
- Connection. We can connect through our soon-to-be website, specialist nurses, newsletter, cancer liaison nurses, a Facebook Group, brochures and posters. There are hundreds more people out there with whom we would like to network.
- Support. We can support fellow patients through acting as “signposters” for services, sharing our common experience, meetings, newsletters, making information resources easily available.
- Advocacy. We can advocate for head and neckers through letter writing, joining DHB consumer groups, working groups, personal contacts and many other ways.
In addition, we would like you to think about 3 - 4 values that underpin our Network. These are principles we bring to our ways of working among ourselves and with others. The proposed four values are: Caring, Engaging, Respecting, Informing. Please give your feedback. Email our new joint email address: headandnecknetwork@gmail.com.
Thank you to everyone who attended the meeting and welcome to newcomers, Pauline and Mark.
Northern Electronic Health Records 
Health care centred around the patient. Tablets for patients in wards. Sounds good, doesn’t it?
This is the aim of a feasibility study currently underway in the northern region. The three Auckland DHBs, Northland DHB, Mercy Ascot Hospital and some GPs are investigating the possibility of introducing electronic health records (EHR) to replace many of the current systems.
At the moment there are 1400 different pieces of software for patient records and a lot of recording is still paper based. According to health strategist Sacha Dylan who helps run the study, there’s a “sea of paper with islands of electronic information”.
Why is it needed? Sacha predicts performance improvement. The northern region has 14 hospitals, a population of 1.6 million, 3516 hospital beds and a 5.3 million health bill. The region could grow by 40% by 2025 and the health system is already under strain. The vision is for safe, more seamless health care, and fewer adverse events.
Perhaps more interesting for us, is that consumers will be involved at all levels if EHR goes ahead. Diana and I attended one of the consumer workshops at Parnell on 25 May and were very impressed by the efforts of the health workers who ran it.
We were shown that patients in the USA can monitor their health on Apple devices and keep in touch with medical centres. Medical professionals in a report from this system said it was “more powerful than any drug we could provide”. It has had “dramatic effects on health outcomes”.
While some medical centres in Auckland are offering patient access to electronic records, the NEHR will be a “turbocharged version of patient portals”. Records will be in one place and all will have access. You can manage your health at home. With consent, you can help manage family members.
This is just a taste of what we learnt at the workshop. I was interested to hear that some hospitals overseas provide patients with free $100 tablets. It’s cheaper in the long run to have patients monitoring their health and not coming back into hospital.
Our own Waitemata DHB has an “iPad ward” at North Shore Hospital. http://www.waitematadhb.govt.nz/News/Waitemata-in-the-news/ID/203/NZs-first-iPad-hospital-ward Maureen
Soft Food Recipes
Recommended by Alison, these are easy to make recipes for those of us who struggle to eat solid food - and for everyone else.
Broccoli and Blue Cheese Soup
Three-Ingredient Cheese Scones
Pappardelle with Mushroom Sauce
http://www.healthyfood.co.nz/recipes/2010/july/pappardelle-with-rich-mushroom-sauce
From the Chair
This month we filed our incorporation application with the Registrar of Incorporated Societies. Once registered we will apply to the Charities Commission for registration there. We are in the process of setting up a bank account, and have acquired our domain name www.headandneck.network.
Maureen and I attended the consumer group day of the Northern Electronic Health Records. We are working with the Oral Health Service to improve the quality and timeliness of information given to patients before, during and after their treatment. In addition, we are working with the Northern and Auckland Cancer Society to ensure the best quality service from the Oral Health Service.
The Australia and New Zealand Head and Neck Cancer Society Annual Scientific Meeting and the IFHNOS 2016 World Tour are to be held in Auckland 25-27 October 2016. We have decided against purchasing a booth over the period of the conference due to the costs. However, we will be promoting our network with a brochure for all conference delegates, and a 20 minutes presentation at the multidisciplinary session. I want to ensure the presentation tells the story of our members. If you want to share your ideas for an impactful presentation, please email them to me dianaayling@outlook.com
We have had two resignations from our committee, David Stevenson and Trevor Pugh. We thank both of them for helping us to get started. We co-opted Adam Love to the committee, and Pat Finlayson as an advisor, until the next AGM.
Over the last month I have given a great deal of thought to the strengths of our network, and the steps that we can take to support, connect, engage, and advocate for people with head and neck cancer experiences. These words seem to sum up what we are about, strength through sharing.
“I want to share my story, and I want to know yours. I believe with all my heart that sharing our stories, the real, ugly, broken ones, is one of the most powerful things in the world, because to share our story we must first accept it. We must own it. We must stop running from it or shoving it into the corner when company comes over. To share our story is to admit that we’ve been changed.”
- Anna White, Mended
Stoma Covers
We are pleased to be selling stoma covers for those people who need them. The covers are no longer available from the Cancer Society. $20 each plus postage.
To order:
- Phone: Diana 021 2130178
- Email: headandnecknetwork@gmail.com
Our Strategic Plan
We would like you to provide feedback on our draft Strategic Plan. We have incorporated feedback from our members, brainstormed collaboratively, and have come up with this draft. Please tell us what you think. We want to ensure we are meeting the needs of our members. Please email to headandnecknetwork@gmail.com
Our Vision: To connect a network of head and neck people,who support each other and work together to advocate for optimal treatment and care.
Connect, support, advocate
Our values: These drive the way in which we connect, support and advocate. They are our guiding principles of engagement between ourselves and others.
Caring, Engaging, Respecting, Informing.
Contact us
Email: headandnecknetwork@gmail.com
Temporary website: http://headandnecknetwork.blogspot.co.nz/
Telephone: Diana: 09 948 2047
Maureen: 09 426 1154
Our Auckland meeting place is Domain Lodge, 1 Boyle Crescent, Grafton, Auckland, 09 308 0161
Next Meeting
9.30 am to 11.30 am at Domain Lodge
Speakers
Dr Francis Hunter, Auckland Cancer Research Centre: “Latest research in head and neck cancer.” (Dr Hunter was unable to attend last time.)
Patricia Melville, Manager, Dove House, Eastern Bay Hospice. “The services offered by Dove House.”
All are welcome to attend our friendly and informative meetings.
Transport to Domain Lodge
Domain Lodge offers parking for attendees. Drive to the entrance and ask at the desk for a parking space to be allocated.
A large number of buses stop at the hospital almost directly opposite Domain Lodge. Grafton Railway Station is just up the road.
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