On Tuesday 19th September we organised a Coffee Morning to coincide with the European Head and Neck Cancer Awareness Week. Once again we used the 13th century Eyre Chapel in Newbold and were blessed with a warm and dry day.
As well as promoting knowledge of the early signs of head and neck cancer, we managed to raise over £200 and half of this will be donated to NALC.
As always at such events, Marjorie Thorne’s baking proved very popular, for immediate consumption or taken away for later.
We thank all our visitors for their generous support.
Pat Wertz Sanders was a laryngectomee and a major contributor to WebWhispers, the USA based internet mail list and online resource. She died last year.
In 2014 Pat published a book about her experiences and it contains much information that other patients may find helpful.
Now, in ebook form, the book is available for free. It does not have the sophisticated writing style of my favourite cancer journal – John Diamond’s C: Because Cowards Get Cancer Too – but there will be few laryngectomees that do not find it helpful.
If you do not have an ebook reader there is the option to download a pdf file.
More and more people are living with the consequences of cancer and its treatment – they are said to be Living With and Beyond Cancer. But currently there’s not enough research relevant to living with and beyond cancer.
The National Cancer Research Institute is working on a project to change this. They have opened a new survey for patients and the people who look after or have looked after them, and the professionals who work with them. The aim is to identify the most important questions that research should address.
Tell them the questions that you would like answered by research by filling out the survey and help to improve the lives of people affected by cancer. The survey will be open until 15 October 2017. You can find out more about the project at ncri.org.uk/jla.
(click on the links shown in green)
One of the worst aspects of head and neck cancer is that successful treatment can lead to permanent adverse effects on quality of life. These can involve difficulties with nutrition, swallowing or speech, which are basic functions for us all, with problems during and after treatment
An article in the Lancet reports on some benefits seen in a study looking at immunotherapy compared to conventional drugs
HOWEVER these are worth looking at as well
Which Valve? A Personal Perspective
I had my laryngectomy over 15 years ago. From the outset I was aware of the possible speech options and was very keen to use a valve to speak. I was the first patient to receive a primary puncture at my local hospital. Though for the first few months it was not possible, I was keen to be able to change the valve myself. I was comparatively young and happily had no other health issues, which could impact on managing this myself. At that time the Nurse Specialist or ENT Clinic Sister took responsibility for this matter rather than a Speech and Language Therapist.
I have been very lucky and have had few complications along the way so I can still change the valve myself at home, when needed. The duckbill valves are very cheap compared to indwelling valves, which can only be replaced by a clinician. Carrying a couple of spares, I can change my valve without a visit to an ENT clinic or far worse to A&E, wherever I am in the country should the need arise.
The NHS is under great pressure at the moment. Changes are being made to where and when specialist services are available under sustainability and transformation plans. I recently became aware that one hospital trust has advised its laryngectomee patients that, in the event of a valve problem, if they turn up to an ENT clinic without an appointment, they may have to be admitted to a ward, depending on availability or otherwise of staff.(Just pray this doesn’t happen on a Friday when that may mean 3 nights in hospital!)
This situation raises several questions:
Are patients being encouraged to use valves they can manage themselves as much as they were ten years ago?
Would patients welcome the chance to be more independent of their hospital?
Of course some patients have complicated circumstances making self-management impossible. It may be the puncture is in a place that makes it impossible for them to change a valve themselves. There may be other medical or capability reasons why a clinician is needed to do this. The changes in the service since my laryngectomy may well mean more patients can be considered eligible for a valve and the quality of speech has notably improved I think. However, considering the benefits in terms of cost to the NHS and convenience for the patient Eric Blom’s original solution still seems to have a lot to offer.
The August edition of Whispers on the Web has an item looking at this topic – see the link below
The Joint Council on Vaccination and Immunisation has declined to recommend the extension of the vaccination programme to boys. The medical community is far from happy. Please clink on the link below for more information.
This decision will mean that in some years time many men will unnecessarily develop hpv related throat cancer.
A busy spring and summer programme came to a close with another trip on Chesterfield canal. This time the destination was The Mill, a hostelry that supplied us with excellent food, most of which had never seen the inside of a freezer! There was plenty to see on the journey with swallows frequently darting down onto the water and mallards squawking with disgust as they had to move out of the way of the barge.
We now have our annual break but will be back with our regular meetings in September, when we have also planned a Coffee Morning to mark European Head and Neck Cancer Awareness Week.
July 27th is designated as the international Head and Neck Cancer Day.
There are events organised worldwide, including in the UK, to mark the day and raise awareness.
As with all cancers, early diagnosis is a key factor in survival. In the picture below some common signs of head and neck cancer are shown.
Additionally, why not check your mouth for any suspicious signs or better still ask your dentist for a check up.
On Monday 26 June we were given the use of the Information Point at the hospital.
The picture shows Chairman, Ray Mountain presenting a boogie board to Head and Neck Nurse Practitioner, Mary Green. This device is for the use of any patient admitted onto Devonshire ward unable to communicate verbally, through being a laryngectomee, tracheostomee or for other reasons.
A boogie board is a thin tablet with a liquid crystal display. You can write on it with a stylus or finger and wipe it clean in an instant using a delete button. It can assist communication between the patient and both their clinicians and families.
We also raised some funds and promoted awareness of early signs of head and neck cancer. As usual at such days there were many valuable conversations with patients, visitors and staff.
On Wednesday June 7th, the Joint Committee for Vaccinations and Immunisation will be discussing extending the HPV vaccination programme to boys as well as girls.
Here is NALC’s view:
From statistics published in 2014, head and neck cancer incidence has increased by 30% since the early 1990s. Though the reduction in smoking has had benefits this has been eclipsed by the contribution of HPV to head and neck cancer incidence.
The Center for Disease Prevention and Control estimates over 70% of oropharyngeal cancer is due to HPV. The % of cases of laryngeal cancer attributable to HPV is lower but still significant, according to International Agency for Cancer Research reports.
NALC strongly supports the proposal for the inclusion of boys in the HPV programme. If the JCVI is convinced of the efficacy of the long-standing programme for girls, why is it resisting its extensions to boys? Like leading clinicians in the field, as well as relevant professional organisations and other patient groups, NALC is convinced the proposal would lead to a reduction in people developing the awful disease that is head and neck cancer.