Support Network Newsletter
September 1, 2016
This month’s talks
Patricia Melville, Dove House
Where do cancer patients go to get relief from the physical and mental shock of diagnosis and treatment? For the people of east and central Auckland, there is a place where they can find wraparound support: Dove House in Glendowie.
Although it is also referred to as Dove Hospice or Eastern Bays Hospice, Dove House is not primarily for people with a terminal illness. It was created to fill the gap between the regular hospices which cater for those who might be in their last year of life and others who have been diagnosed with a life-threatening illness but are expected to survive.
Twenty years ago the people of East Auckland wanted a local hospice but didn’t want to duplicate Mercy Hospice in Ponsonby. They looked at what was missing. They could see that the hospice movement, originally about holism had been “hijacked by the medical model”. Why not, they thought, take the concept of “holism” back? .
Dove Hospice decided to support people who have a serious diagnosis (mostly cancer) but are not dying, as well as people with a terminal disease. (They still see terminal patients but usually see people earlier in their cancer journey when a cure is possible.) Ten years ago the name of the building was changed to Dove House
The Cancer Society used to provide six free massages and lymphedema care but have ceased that support which is where Dove House has stepped in, providing services which are not available elsewhere.
Dove House therapies are geared to “soften” what medical treatment does to cancer patients. Their treatments are meant to offer deep relaxation and stress removal. The organisation is patient focussed.
They offer a number of services provided by well trained professionals. Below are some of them:
- Nutrition advice
- Oncology massages
- Reflexology
- Skin and nail treatment
- Lymphoedema treatment
- Art therapy
- Chair yoga
- Psychotherapy
- Emotional support
- Spiritual care
- Three hospital beds for respite or end of life care (in St Andrews Hospital)
These complementary therapies are not an alternative to medical treatment. They are designed to encourage wellness, to empower people. What works for one person might not work for another. They place great importance on training. Their oncology massage therapist also helps at the bone marrow transplant ward at Auckland Hospital because her treatment is gentle enough for the most vulnerable patients. They can be seen as “flakey”, says Trisha. It is important for them to maintain credibility.
Dove House encourages men (more reluctant than women) to seek help from Dove House. The have a male psychotherapist and run regular Blokes’ Nights.
They have no government funding but get most of their funds from their Dove Hospice Shops. Interestingly, these shops do very well because they are situated in an affluent area bordering a non-affluent area.
Where is Dove House? Pictured above, it is situated in the grounds of the St Andrews Retirement Village but is independent. There is collaboration, however, because as stated above, Dove House has access to three hospital beds at St Andrews where they provide respite and end of life care.
Thank you, Patricia, for your informative and thoughtful talk.
Be.accessible
Minnie Baragwanath from Be.Accessible was sick today so could not speak to us. Her TED talk however is on our website. It is an inspiring speech about accessibility for people with all sorts of impairments from major to minor disabilities. Many of us for example need soft food. We have accessibility problems when it comes to eating out and sometimes speech and appearance issues. In a world where appearance is valued to such a high degree, it can be hard to go out with scars and facial defects. It’s inspiring when people can rise above that. Minnie is partially sighted and has recently been treated for breast cancer. She is a strong advocate for a world where accessibility and acceptance rule. Be. Accessible is the name of her charitable organisation.
https://www.youtube.com/watch?v=__V07QKguBI&feature=youtu.be
The meeting
We had a small group of 13 this time but were pleased to welcome Vanessa, a nurse at the ORL Outpatients’ Clinic. It was also great to have our speech language therapist, Esther, back. She had been tied to a clinic on Thursday mornings so we hadn’t seen her friendly face for a while.
Alison and Esther, our SLT
Diana updated us on the network’s progress and we took a group photo. This wasn’t for the newsletter but for a “satchell inset” to be provided to medical professionals at the upcoming head and neck cancer conference in Auckland next month. It took a lot of shuffling and trial and error to fit us all in and make us respectable.
Our temporary website (or blog site) is doing very well after a slow start. Some entries spark interest around the world including one uploaded by Diana on the issue of disclosure of surgical outcomes. Should hospital departments disclose the success or otherwise of their surgeries? Interestingly, Waitemata District Health Board has started disclosure.
http://headandnecknetwork.blogspot.co.nz/2016/08/should-we-disclose-surgical-outcomes.html
The Head & Neck Cancer Support Facebook group has over 50 members (increasing slowly all the time) from Invercargill to Whangarei. Twitter, so confusing to so many of us, is flourishing too. Diana showed us how to use hashtags and follow people of interest
Patient Story
Below is the head and neck cancer story of one of the new friends we made on Head and Neck Cancer Day, July 27. Geoffrey runs a support group in the UK. Initially it was for laryngectomees but is now for head and neck people in general. Thank you, Geoffrey for letting us use your account of your cancer.Geoff’s Journey Through Head & Neck Cancer
In The Beginning. I was coming to the end of my 15-year engagement with British Aerospace in the Kingdom of Saudi Arabia when I started getting a husky voice and was hospitalised for a few days due to flaking out a couple of times. After returning to the UK upon retirement I became bored and went to Baghdad, Iraq for a year or so to help to set up a Private Security Company out there. Again I suffered similar voice problems and my voice would come and go. And again I flaked out a couple of times, once on my flight home to UK. I put all this down to the dusty conditions of the desert. When back in the UK I saw my local General Practitioner who immediately referred me to a consultant at my local hospital.
The Diagnosis. The Consultant took a telescopic look down my throat via my nose and then said “You know what this is don’t you?” I immediately knew and replied “Yes, I think so.” After various scans, x-rays and being prodded and poked, I was informed that the cancer on my larynx was T-4 which meant it was aggressive, was already eating my larynx and was now looking for somewhere else to go. We then discussed the options.
The Operation. I was given a total laryngectomy in January 2009 and they also removed the lymph nodes in my neck and part of my thyroid. This all went well and I healed surprisingly quickly. And soon I was eating, drinking and talking again with confidence.
The Side-Effects. Some weeks after that operation I was to endure 37 consecutive days of radio-therapy and weekly sessions of chemotherapy. This too went well although I did start to get nauseous and my neck was quite burned. I had to be readmitted to hospital as I was dehydrating badly. I overcame this hurdle and soon I was up and about, and going about my normal daily routine. After a few months I started to suffer frequent problems with my the speech valve in my throat and had to have it changed frequently.
Apparently, the effects of the radio-therapy had badly scarred the tissue inside my throat. I was in and out of hospital over the next few years until 2014 when I was eventually unable to eat or drink by mouth, or talk at all for eight months.
It’s now over seven years since my laryngectomy and the hair under my arms or my chest has still not grown back! And when the sun shines hot, my neck starts to cook again from the radio-therapy effects. Prior to the radio-therapy sessions I was fitted with a PEG in my tummy to enable me to take food and liquid directly into my stomach. I still have the same PEG fitted some six years later!
The Major Pectoral Muscle Flap. Eventually, in 2014 my consultant referred me to a consultant surgeon in the Northeast of England where I underwent a Major Pectoral Muscle Flap. This entailed taking muscle tissue from my left chest / breast and flapping it into my neck. I no longer have a left man-boob and had eighty metal clips stapled in my chest after the operation, since removed. This all went remarkably well and I was up and running again reasonably quickly. I was again able to eat, drink and talk. I can eat and drink, albeit slowly, and the food must be soft and small. But…
I am now unable to talk at all.
The Way Ahead.
Another operation is necessary to realign my speech valve and it’s not sitting right and this is preventing me from using what voice I have left. However, my consultant seems somewhat hesitant as he’s said to me “That sometimes when we try to put things right, we can make matters worse.” That hasn’t instilled me with a great deal of confidence but I completely in their hands. It may be that I will have to take the choice between eating and drinking or talking. I may not be able to have both. My choice, without a doubt, would be to be able eat and drink!
So… my journey hasn’t finished yet!
Thanks.
Without a doubt, I owe my life to the GP who first saw a problem and immediately referred me to a consultant. That in itself saved my life. And thanks too, to all the surgeons, medical staff and hospital workers who have been there for me for these past seven years.
Geoffrey N. Read
Monday, 25th July 2016
The Diagnosis. The Consultant took a telescopic look down my throat via my nose and then said “You know what this is don’t you?” I immediately knew and replied “Yes, I think so.” After various scans, x-rays and being prodded and poked, I was informed that the cancer on my larynx was T-4 which meant it was aggressive, was already eating my larynx and was now looking for somewhere else to go. We then discussed the options.
The Operation. I was given a total laryngectomy in January 2009 and they also removed the lymph nodes in my neck and part of my thyroid. This all went well and I healed surprisingly quickly. And soon I was eating, drinking and talking again with confidence.
The Side-Effects. Some weeks after that operation I was to endure 37 consecutive days of radio-therapy and weekly sessions of chemotherapy. This too went well although I did start to get nauseous and my neck was quite burned. I had to be readmitted to hospital as I was dehydrating badly. I overcame this hurdle and soon I was up and about, and going about my normal daily routine. After a few months I started to suffer frequent problems with my the speech valve in my throat and had to have it changed frequently.
Apparently, the effects of the radio-therapy had badly scarred the tissue inside my throat. I was in and out of hospital over the next few years until 2014 when I was eventually unable to eat or drink by mouth, or talk at all for eight months.
It’s now over seven years since my laryngectomy and the hair under my arms or my chest has still not grown back! And when the sun shines hot, my neck starts to cook again from the radio-therapy effects. Prior to the radio-therapy sessions I was fitted with a PEG in my tummy to enable me to take food and liquid directly into my stomach. I still have the same PEG fitted some six years later!
The Major Pectoral Muscle Flap. Eventually, in 2014 my consultant referred me to a consultant surgeon in the Northeast of England where I underwent a Major Pectoral Muscle Flap. This entailed taking muscle tissue from my left chest / breast and flapping it into my neck. I no longer have a left man-boob and had eighty metal clips stapled in my chest after the operation, since removed. This all went remarkably well and I was up and running again reasonably quickly. I was again able to eat, drink and talk. I can eat and drink, albeit slowly, and the food must be soft and small. But…
I am now unable to talk at all.
The Way Ahead.
Another operation is necessary to realign my speech valve and it’s not sitting right and this is preventing me from using what voice I have left. However, my consultant seems somewhat hesitant as he’s said to me “That sometimes when we try to put things right, we can make matters worse.” That hasn’t instilled me with a great deal of confidence but I completely in their hands. It may be that I will have to take the choice between eating and drinking or talking. I may not be able to have both. My choice, without a doubt, would be to be able eat and drink!
So… my journey hasn’t finished yet!
Thanks.
Without a doubt, I owe my life to the GP who first saw a problem and immediately referred me to a consultant. That in itself saved my life. And thanks too, to all the surgeons, medical staff and hospital workers who have been there for me for these past seven years.
Geoffrey N. Read
Monday, 25th July 2016
From the Chair
This month we have focused on connecting and supporting the head and neck cancer community. Our Facebook group gained an impressive 46 members. There were 40 posts and too many “comments” and “likes” to count. There is plenty of good discussion, connection and support taking place. We are connecting internationally. Through Twitter there was positive feedback to the content/posts posted on our Website. Welcome to everyone who has joined us in the month of August.
Continuing with our theme of connecting. I have met with Dr Neil Croucher, clinical director of the Oral Health Service, and Dr David Grayson, Clinical Director of the Waitemata, ORL Department. We are now linked to the Ministry of Health, Faster Cancer Treatment programme, including the national tumour stream activities. We connected with Brian Sheppard, who in 2013 was a patient advocate. He sat on the development team for the Head and Neck Cancer Standards of Service Provision. These connections are strong and positive.
Our role is to advocate for you. We are working to strengthen our voice. The more that healthcare professionals, agencies and individuals know about our Network, the more likely we are to be involved in decision making affecting head and neck cancer people.
This month Adam Love resigned from our HNCSSN committee. Adam was the energy behind our move to Facebook and social media. We thank Adam for his contribution, especially his wonderful story published in our newsletter and online. Go well Adam. ( Adam is still very active on our Facebook page and is one of our go to people on chemo-radiation. Ed.)
We are looking for new people to help the Network. If you are interested in helping us out please do contact us.
6 October, 9.30 am to 11.30 am at Domain Lodge
Speakers
The team from Domain Lodge, and the Auckland Cancer Society
Your Committee on the upcoming international Head and Neck Cancer Conference.
All are welcome to attend our friendly and informative meetings.
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.
Continuing with our theme of connecting. I have met with Dr Neil Croucher, clinical director of the Oral Health Service, and Dr David Grayson, Clinical Director of the Waitemata, ORL Department. We are now linked to the Ministry of Health, Faster Cancer Treatment programme, including the national tumour stream activities. We connected with Brian Sheppard, who in 2013 was a patient advocate. He sat on the development team for the Head and Neck Cancer Standards of Service Provision. These connections are strong and positive.
Our role is to advocate for you. We are working to strengthen our voice. The more that healthcare professionals, agencies and individuals know about our Network, the more likely we are to be involved in decision making affecting head and neck cancer people.
This month Adam Love resigned from our HNCSSN committee. Adam was the energy behind our move to Facebook and social media. We thank Adam for his contribution, especially his wonderful story published in our newsletter and online. Go well Adam. ( Adam is still very active on our Facebook page and is one of our go to people on chemo-radiation. Ed.)
We are looking for new people to help the Network. If you are interested in helping us out please do contact us.
Next Meeting
6 October, 9.30 am to 11.30 am at Domain Lodge
Speakers
The team from Domain Lodge, and the Auckland Cancer Society
Your Committee on the upcoming international Head and Neck Cancer Conference.
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.