Support Network Newsletter Volume 2, No. 1 October 6, 2016
This month’s meeting
The turnout was good at today’s meeting with about 20 people present, including some new faces. It was lovely to see people from our Facebook group present in the flesh. And Minnie was able to come along and talk to us about her organisation called Be.accessible. You might not think that a disability/accessibility group is relevant to us but Minnie’s explanation made it very much so. We also learnt a lot from the Cancer Society representatives who talked to us in the second half. How blessed we are to have the Society provide us with their services.
Before the talks we discussed issues like our new website and the isolation of people in some rural areas. Diana explained that our present website is only two dimensional, not interactive. Our new website, to be online at the end of the month, will have many features. It will be less about us, the administrators, and more about people all over New Zealand. We will keep our Facebook group going of course but the website will also be a storage site for important information such as the head and neck cancer guidelines provided by PhD student Amy Richardson and checked by Professor Randall Morton.
We also discussed fibular bone grafts which two people present had experienced.
Accessibility means more than wheelchair access
When Minnie Baragwanath was diagnosed with advanced breast cancer she felt she was drowning in a sea of information and appointments. As a partially sighted person she couldn’t read the material handed or posted to her.
She had a “myriad” of appointments to juggle, with 25 different health professionals and felt she needed a project management system to handle it all.
Her eyesight problem limited her access to the health system. Lack of access in this arena could be “a life or death thing”, she said.
But it’s not just about accessing the health system but how we live with accessibility problems throughout our lives. Minnie said that 25% of the population have issues with accessibility. (For head and neckers this could mean eating out, speaking, or problems with our appearance, for example.)
Her organisation wanted to launch a “legacy of social change” where public businesses and institutions are accessible to all in a way that means far more than wheelchair access.
Be.accessible was launched in 2011 and tried to tap into the audacious New Zealand spirit. We were the first to give women the vote, to have a document like the Treaty of Waitangi, to go anti-nuclear. We could lead the way in creating a fully accessible society. “Diversity is part of being human,” she said. 
She and her team wanted to turn disability on its head and see it as an opportunity. It is a business chance for many who compete to earn a high status on Be.accessible’s ranking system which ranges from Bronze to Platinum. After all, there is good business to be done in targeting growing sections of the public. Look at the pink dollars for the gay community and the green dollar for the environmentally aware. Be.accessible came up with the yellow dollar (the colour of their brand) for the accessibility sector and it’s working. The Auckland Art Gallery and the Auckland Zoo are currently competing to get to Gold.
They are also helping the new International Airport develop accessibility. They are making inroads into the health system. One of the private breast clinics has a Silver rating. Because many doctors have an A-type personality by nature, she is hoping they will compete to achieve a high accessibility status.
Finally, Be.accessible is a revolution in thinking. It tries to remove an attitudinal block. Be accessible is making our public spaces accessible for all: physically, socially, culturally and spiritually.
Bring it on.
For much more detail about Be.accessible, go to their website. http://www.beaccessible.org.nz/
Here is a link to Minnie's excellent Ted Talk delivered earlier this year.
Quotations from our people on Facebook
“Never waste an opportunity to tell someone you love them.”
"Strength grows in the moments when you think you can’t go on but you keep going anyway."
“Never too old to learn.”
“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what the storm’s all about.” Haruki Murakami
Access to support services: the Cancer Society
Overview
Michelle Gundersen-Reid, Manager of Supportive Care and her colleagues, Rebecca Irwin and Jacqui Fill, spoke to us about the services offered up here in the Northern Region which covers the three Auckland DHBs and Northland. Auckland has Domain Lodge which has many facilities on top of its accommodation function and Whangarei has Daffodil House staffed by five people.
In 1963 New Zealand was divided into six regional divisions and the Cancer Society became the Cancer Society of New Zealand Inc. In 1981 a national office was set up in Wellington to which all the regions pay a levy. Each division has its own CEO and board so the divisions differ from each other to some extent.
There are core services like the 088 CANCER helpline. Cancer Connect is run by Christchurch/West Coast but is a national service. Cancer Chat is run by the Wellington division. They will provide cancer tips and have nurses on the site.
All divisions run community visits and offer a volunteer driver service.
As the years go on and hospitals are employing Cancer Care Coordinators, the Society is moving into post-treatment care. Hospitals think that issues stop when treatments stop, but that isn’t always the case.
Numbers of people who attend Domain Lodge for help with coping are very high. For example, there were 728 referrals to psychological services last year, 1967 counselling sessions and 874 people attending the various groups and classes. You can find information about groups and services on the Cancer Society website. There are too many to list here. Interestingly, one of the most successful groups is the “Light of Love” group provided for Mandarin speakers.
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| Daffodil House in Whangarei |
Information and nursing service
Rebecca is in charge of the liaison nurses and the information service. There are nurses available in the offices upstairs in Domain Lodge, near the library. Here you can meet with them face to face. The liaison nurses visit people in their homes, help people manage their symptoms and navigate the system. They also work closely with the hospitals to ensure the best care possible. Last year they carried out 6071 visits.
A nurse also attends the ORL clinics during radiation. A Cancer Society person is one of the big team we come across when we have the weekly oral health appointment.
Volunteer service
Jackie manages the 450 volunteers who work for the Cancer Society in Auckland. Volunteer drivers, “an amazing group of people”, comprise 260 of the volunteer group. Last year 717 people were driven to hospital in 4257 trips.
They have an excellent database to manage the driving service. If you want to volunteer, go to the How Can We Help? Page and click on the Health Professional button. https://auckland-northland.cancernz.org.nz/
Volunteers help in so many other ways. Those of us who had radiation will remember the “yellowshirts” who welcome us in the waiting room and are always ready to make us a cup of tea.
Finally, there are some new resources arriving on the Cancer Society website. They have information on how to work with WINZ and some new material on dental care provided by the Dental Department at Christchurch Hospital.
Here are some links to helpful Cancer Society information for head and neckers
Patient Story: Liz Gray
In The Beginning
I was born and bred in Invercargill, am 61 years of age, never smoked and didn’t drink. I left high school and worked at a solicitor’s as a legal typist, married at 17 years of age and had three beautiful children, a son and two daughters.
Prior to having my youngest I got quite sick in 1980 and was diagnosed with Idiopathic Thrombocytopenic Purpura otherwise known as ITP and was given a splenectomy. ITP is a low platelet count (white blood cells). Since the splenectomy I have to carry antibiotics with me everywhere as I have a very low immune system and can get sick quite quickly. I also have injections every two years to help with my immune system.
After my youngest was 2 ½ years of age I worked at a Drycleaners as Office Manager and was there for 21 years.
My first husband was killed in a car crash on his 42nd birthday and my second husband died on my birthday in bed beside me with a massive heart attack.
But I have been blessed with nine wonderful grandchildren ranging from 18 to 1.
I have since been with my partner for the past 11 years and we have now become property developers where we build new properties and rent them out. We are in the process of building 11 apartments and hopefully they will be finished by December 2016 ready for the rental market.
One of the things we do every year has been to travel. For our first four years together we had a caravan in Australia and travelled all around Australia for about three to four month of the year, avoiding the New Zealand winter. We have since purchased a property over in Australia at Twin Waters on the Sunshine Coast and we still go over there for about three to four months of our New Zealand winter. For the past four years we also went cruising. The first one was around Vanuatu and the islands, the next one was the Mediterranean and then we did Spain and Portugal. one was to China and Beijing where we went to my home stay’s daughter’s wedding and that was a full Chinese wedding. Last year we cruised around Asia.
The Diagnosis
On our return to New Zealand after our cruise around Asia, my journey began. I had a bit of a nagging cough which is not unusual for me but it just did not seem to go away so I went to my doctor. Glands were a bit swollen and I was given two different inhalers to use. Cough improved and so did my sore throat but for some reason things did not seem right. I put my fingers down my throat and found a lump on my tongue which I did not like the feel of so back to the doctor. Three weeks later, he referred me to an ENT specialist who took a biopsy. The result of that was on the 30th October 2015 my life totally changed forever. I had cancer, something I never wanted to hear. He organised a CT Scan and I also had to have a PET Scan. On 23rd November 2015 was the result of the PET Scan and the doctor said, “Well I am sorry to say it is not good.” It had spread to my lymph glands in my neck and in my groin. I went to see another specialist who wanted me to have biopsies done of the glands in my neck and groin and the result of this was better than I expected. They had downgraded the cancer from a IV to a III and II. I had Squamous Cell Carcinoma of the base of the tongue Level II and Level III.
The Treatment Plan
My oncologist had done the plan for my treatment. She did not want to operate as she felt it would create more issues but the treatment was going to be aggressive. Treatment started on the 14th December 2015 which consisted of chemotherapy in the morning and radiation in the afternoon for the first week, second week off, third week the same as the first, fourth week off then the next three weeks was radiation in the morning and again in the afternoon. I had to wait for six hours before I had the second dose for the day.
The Side Effects
On my first day of treatment I ended up in hospital with very high blood pressure. It was 215. They had to cancel day five of my chemotherapy due to the high blood pressure and they changed the type of chemotherapy so I only had to have one full day of chemotherapy in my third week. During this time I ended up getting blood clots in my arm due to the PICC Line so was put on a course of Clexane injections for three months.
The end of week six of my treatment I hit a brick wall and went downhill very fast. I was given morphine to help me with the pain and on the 25th January 2016 I was put on a PEG feeding tube to help me with my food as there was no way I could eat. 29th January 2016 could not come quick enough as it was the last day of my treatment.
I struggled with the pain in my mouth from ulcers over the next few weeks as they were not healing. Got the feeding tube taken out after a month which made me feel so much better. Food was still a struggle though and I had no taste and no saliva glands. 18th March was the last day for my Clexane injections a milestone for me that day. My days were spent in bed and sleeping as I was on a fairly high dose of morphine and the pain from the ulcers were not going away as they were not healing. 14th April 2016 I finally got medication to help the healing process plus I was put on antidepressants as I had hit another brick wall. As time went by my days seemed to be getting better. I lost 15kg in weight but I was very lucky that I had the weight to lose.
The Way Ahead
It is now eight months since treatment finished, I am no longer taking any medication apart from multi vitamins and probiotic tablets. My eating is pretty good but I do struggle with taste. One day it can be reasonably good then the next day everything is so bland. I have no saliva glands and have been told this will most likely be permanent so I have my drink bottle with me all the time as this is my new normal. I feel good, and every week I improve and feel I am getting more energy every day. My oncologist is very happy with my progress and has told me that the cancer has gone. I still live in that fear that it will come back but I am a survivor and I have my support group which consisted of my partner, my children, my grandchildren and my friends that got me through. I still go to the doctor monthly to get blood tests and have my blood pressure taken and I am down to three monthly visits with my oncologist, two monthly visits with my ENT specialist and three monthly visits with my dentist.
My goal next year is to travel to Canada, go on the train trip around the Rockies and also do an Alaskan and a Caribbean cruise
I look at myself as a very lucky person and I treasure every day
Liz Gray
13th September 2016
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| Canterbury/West Coast Cancer Society |
Chair’s Report
This month we are fundraising to support what we believe to be the first interactive internet-based cancer support group in New Zealand. We have purchased software that will enable us to be an online community of support and advocacy. The new website, under development for the last three months, will go online at the end of October. We are actively fundraising to ensure we can sustain the online community for three or more years. We want to reach a target of $2,500. If you wish to make a donation click here.
Head and neck cancers have been increasing in New Zealand with about 700 confirmed new cases last year. Even successfully treated patients are left with ongoing effects caused by radiation treatment or surgery. There is a definite need for patients, their carers, and families to be connected and supported.
Changing demographics, technology and performance expectations is creating a new environment for health care. There is a need for the patient voice in head and neck cancer. As an advocacy group we will be able to seek, and hear your thoughts. Informed by your ideas and opinions, we will be able to collaborate with government and healthcare providers to ensure wise decision making to support the best possible care and treatment for head and neck cancer people.
When the website is up and running, members will get support from each other in a general forum and in more focused groups according to where they live, their type of cancer and their stage of treatment.
Diana Ayling - Chair
Find us on Social Media
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| Domain Lodge Auckland |
Contact us
Email: headandnecknetwork@gmail.com
Temporary website: http://headandnecknetwork.blogspot.co.nz/
Telephone:
Mobile 020 4002 5663
Our Auckland meeting place is Domain Lodge, 1 Boyle Crescent, Grafton, Auckland, 09 308 0161
Next Meeting
3 November, 9.30 am to 11.30 am at Domain Lodge
Speaker
- Dr Kim Gear from Oral Health. She will be talking about dental care and mouth inflammation and much more. This is essential information for us. Can't miss this one!
All are welcome to attend our friendly and informative meetings.
Transport to Domain Lodge
Domain Lodge offers parking for those who attend our meetings. 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.
Reminder
We are here for people outside Auckland too. You can join us on our blog or on our Facebook site. Watch this space for news of a comprehensive website.
dear,
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