Head and Neck Cancer Support Group for Bedfordshire, Hertfordshire and Buckinghamshire based at the Luton and Dunstable Hospital Macmillan Centre.

Forthcoming Meetings

Wednesday May 1st at 7pm

Now classed as regulars the Complementary Therapists Team based at Luton's Barnfield College are making another visit to the Rugby Club.

Put this in your diary.

The therapists are by far the best supported of all our functions. Get there early. It is always busy.

Wednesday 5th June 7PM

Rob Bunyan leads a discussion on Oral Hygiene and Dental care following treatment for Head and Neck Cancer.

If you have questions about dental care following Surgery or Treatment Rob will be happy to advise.

Keith Foster

31st May 1938 - 2nd March 2013

It is with great sadness that I have to report that Keith Foster passed away on the 2nd of March 2013.

Keith was a tireless worker and succeeded in bringing about many positive changes that improved the experience for Cancer Patients.

There was a Service of Thanksgiving at Ashley Green on the 15th of March which completely packed St. John Evangelist Church.

We are working to establish a fitting memorial for Keith and we hope to have news of that shortly.

We are happy to announce that the Head and Neck Social Group won a Silver award from the Mouth Cancer Foundation.

The Foundation reviews the progress and commitment of Support Groups and their future plans bi-annually .

Attached to the award is a �1,000 cash donation to assist in further developing the group.

Xmas Party Wednesday December 12^th

There will not be a meeting on the first Wednesday in December. Instead the Xmas Party will be on Wednesday the 12^th at 7pm.

A buffet has been arranged. Thanks to Matt�s partner Karen her daughter is organising and running a Xmas quiz for us on the night. There will be prizes for the winning table.

We will be holding another bring a prize raffle so please bring a prize wrapped or otherwise so we can raise funds to cover the buffet and a donation to the Rugby Club.

You are very welcome to bring a guest with you. This is an open invitation to patients, carers, your relatives, hospital staff and consultants.

The Rugby Club has a full bar at good prices. Come and enjoy some good company.

(If you don�t have transport let us know we will try to help) Contact Derek web@hansg.co.uk.

Pam Blackburn

Many of you will know that in lieu of flowers at Pam�s recent funeral relatives requested that a donation be made to Cancer Research UK.

The collection we made at the Rugby Club raised �80.00 which Hugh passed on to Cancer Research.

Thanks to you all for contributing.

Pampered Chef Fundraiser Update

The Pampered Chef fundraiser that Amanda Organised for us went well last Wednesday. We made �54 from the sale of the lovely cupcakes donated by Carolyn and the raffle. Keith won a �20 voucher. We also will be receiving around �26 commission from sales on the night and I have agreed to have a home party in the new Year.

So about �80 made in total, a welcome addition to our funds.

The Recipes for both the Broccoli Dip and the Chocolate Molten Lava Cake are her on the website for those who requested them. Recipes Click Here

www.pamperedchef.com

Draft Constitution

As the group has been getting bigger and its operations are becoming more complex Hugh and Derek have been working to prepare a draft constitution for the group. The officers, representatives from the L&D and other committee members also need to be protected from events outside of their control and some basic operational rules need to be laid down.

There is a draft document now available Click Here for Word Document. Everybody is encouraged to comment on the draft and make suggestions or objections as they see fit.

The timescale is for the first round of submissions to be made by Friday the 23rd of November. At that point depending on the depth of the changes the constitution will be adopted with minor changes or it will be re-submitted for further comment or pea vote if required.

It is envisaged that Hugh, as Chairman, will will consider all submissions and take any decisions required for the benefit of the group in total.

Hints and Tips for Swallowing

Following on from Jenny Hunt�s September talk on swallowing problems a number of personal recommendations were made by the members all of which have experienced varying degrees of Swallowing or Taste problems.

These have been collected together here for the benefit of everyone

Click Here for Details

Forthcoming Meetings

November 7th � Pampered Chef � Cookery and product demo fundraiser � 10% of sales will be returned as funds for the group. There will also be a raffle. (which, based on history, Amanda will no doubt win). There will be a limited supply of some lovely cupcakes on sale on the night, all monies to the Head and Neck Social Group

October 3rd � Complementary therapists from Barnfield College. Put this in your diary. The therapists are by far the most popular attraction we have ever had.

Canal Trip 27^th May 2012

For Pictures Click Here

We all had a great day out on the Canal at Pitstone on Sunday. Twenty one of us, including some relatives and friends, enjoyed some of the best weather we've had this year.

The Cruise company were more than fair, they found a few extra public trippers and just charged us for the Twenty One that we had booked.

One of the public trippers kindly took the group picture above.

I will have some more pictures put up shortly, I have some to process and I know that Jim has. Anyone else that has a good shot please mail it to me.

Hopefully this will be the first of a number of affordable social events. Suggestions are welcome, if you have a trip that you want to organise let me know.

April Meeting

Marisa Richards (Commissioning Manager NHS Beds and Luton) will be addressing the Group at the 4^th of April Meeting.

Marisa is interested in the group�s views about Radiotherapy. Marisa would like to get the views of those who agreed to Radiotherapy and also those of who chose not to.

She is also interested in topics such as the options you might have been given by your consultant and how the journey time might have affected you decision to attend.

Please turn up and participate in the discussion. Your views can affect the policy and the outcome for future patients in this region.

Day Room Ward 20

As we reported before the Day Room alongside Ward 20 is being used for Head and Neck Members to meet with current patients.

Whilst it was a nice quiet space it was a typical Hospital Room with poor furnishings. The room has now had a great makeover with input from the Head and Neck Cancer Nurses.

Amanda Naylor has sent over the latest picture. I'm sure anyone who has used the room in the past will immediately notice the difference.

March Meeting

Fiona Ritchie will be answering questions, offering hints and tips relating to dry mouth and oral care.

Fiona works for RIS Products Ltd www.risproducts.co.uk promoting a oral healthcare products which are particularly relevant to Head and Neck Cancer Patients.

Fiona Ritchie doubles as project manager for Christine Piff Letsfacit support network for people with facial disfigurement www.lets-face-it.org.uk.

Fiona previously accompanied Christine on her visit to the Head and Neck Support Group�s meeting in November.

New Year New Outlook

Louise Bolton who is a Macmillan Primary Care Oncology CNS will be along to tell us about �The Cancer and Exercise pilot which is starting this month.

Active Luton and Macmillan are working together to look at exercise that can be offered to cancer patients during treatment as it is shown to improve or prevent the decline of physical function without increasing fatigue.

Louise would like to take the opportunity to explain the pilot scheme and hear what exercise patients might like to take part in either individually or as a group. Louis will also explain how to obtain an assessment to join the pilot or how attend drop in centre for further information.

You can find out more about the scheme by downloading the PDF file :- Physical Activity

It's that time again and the Head and Neck Social Group would like you to be our guest and join us for a drink and a buffet at our Xmas Party Wednesday December 14th.

This year we have splashed out on a floor show and we have booked

Russ Styler who will tour the tables and perform magic close up.

You are very welcome to bring a guest with you. This is an open invitation to patients, carers, relatives, hospital staff and consultants.

There will also be a Raffle on the night to raise funds please would you bring a prize. The Rugby Club has a full bar at good prices. Come and enjoy some Good Company.

(If you don�t have transport let us know we might be able to help.) Contact Derek web@hansg.co.uk.

Being diagnosed and treated for Head or Neck Cancers is a difficult time for anyone. Members of the L&D Head and Neck Cancer Social Group have pioneered a new service that makes two members available each week to advise and support recently treated patients.

Some of the Head and Neck Buddies from the L&D Head and Neck Social Group

The system works with the assistance of the Head and Neck Specialist Nurse Carole Glover and Jenny Hunt Speech and Language Therapist.

The Group is organised into teams of two who make themselves available on a rota system. Visits are not required every week but when they do take place they are received well.

The team have all been vetted with the assistance of the hospitals volunteer service and report to the ward management on arrival. We are fortunate to have a good size day room where the group can base themselves.

The system has been operational since the beginning of Summer and we will be looking at the results of their efforts in the new year. If you wish to start a similar scheme or have questions regarding its operation please mail web@hansg.co.uk.

Thanks to Lets Face It founder Christine Piff and Fiona Ritchie we had a very good meeting in November Christi

Christine and Fiona with some of the group

ne proved to be a very positive role model for victims of Head or Neck Cancer.

It was a great presentation and we have asked Fiona to come and talk to the group about dry mouth sometime in the future.

On Wednesday 2nd of November Christine Piff Founder/Chief Executive and Project Manager Fiona Ritchie both of Lets Face It have been invited to talk about their work.

Christine Piff is the founder of Let's Face It;
in the loss of half her face, including the left eye.
Christine founded the network in 1984
having experienced the loneliness and
despair that living with a 'changed' face brings.

Fiona Ritchie will be on hand to offer advice on managing the symptoms of dry mouth.

As ever the Barnfield team put in a real effort to make the evening another great one.

A Drink and a foot massage. Could be a winner

Taking Pictures in the Bar is difficult because of the lighting but here are a few to give a flavour of the night. We hope to have them back again in 2011.www.barnfield.ac.uk

Saturday 17th and Sunday 18th saw the 2011 Relay for Life weekend of entertainment and fundraising

for Cancer Research UK take place at Stockwood Park Luton.

If you have never been to Relay you are missing a great party in the park and a chance to support sponsored teams of walkers making a 24hour assault on the athletics track to raise funds for Cancer Research.

Both the organisers and the teams put on sideshows and all kinds of entertainment. Best of all its a party atmosphere.

There is always a very professional stage and this year was no exception with some excellent music, singing, excerpts from musicals and even a choir. The more energetic joined in for a long Zumba workout on the grass to some good music.

Jim Lucas and Derek Tidman had a great day out with the Maxillofacial team at the Redbridge Cycle Centre in East London on Saturday the 3rd.

We relaxed whilst the team pounded around a particularly steep track in order to raise money for the Charity Changing Faces. www.savingfaces.co.uk

Click the team picture for a page of photos of the day. It's not to late to donate just follow the link on the page.

Chi-Hwa Chan Consultant Oral and Maxillofacial Surgeon at Luton and Dunstable Hospital has co-opted a team of clinicians from the L&D, Bedford and family to raise money for Saving Faces.

The team will have their fitness tested on Saturday 3^rd September at the Redbridge cycle centre in Ilford.

The team also aims to raise at least �500 to pay for a statistical analysis of the outcome of the treatment of every mouth cancer patient treated in their unit over the past 9 years.

The statistician who will conduct the review works at Mount Vernon Cancer Centre and she has offered to donate the money she receives to the Mount Vernon Research Fund!

This vital information is not currently available. The outcome of treatment is of paramount importance in order to modify and improve service to patients.

There are a limited of grants available for members of Head and Neck Cancer and Laryngectomy support groups to attend the annual Mouth Cancer Walk in Hyde Park London.

Summer is here and to celebrate we are throwing a welcome party to encourage new and existing members to attend. There is no charge just bring yourself and a friend if you wish.

June Meeting is the Second Wednesday due to a prior commitment at the Rugby Club.

All the pledges have been called in and the moneys now been collected Aran, Connor, Sam and Seb raised an amazing total of �5,094 which is a great result.

John Pickles (the L&D's Medical Director) took time out to accept the cheque on behalf of Ward 20 at our June Meeting at the Luton Rugby Club.

(Ironman & 70.3 are recognised as registered trademarks of WTC and are used to link to the WTC website for information)

Due to the varying commitments of the team members the Ironman Half-Triathlon took place at short notice on the 10th of April.

"Everyone seemed to enjoy it, surprisingly nobody looked exhausted, estimated timings for each stage were pretty close except for 2 punctures on the cycling stage.

We shook a bucket at the swimming pool which ended up with a few pence under �100 and another was shaken at the pub that looked fuller but hadn't been counted.

A quick peek at the just giving page has a tally over �2800 @ 56% of target and the text and puns have been amended to announce that the boys completed their challenge with the page being kept open for another month."

This severe test of stamina and determination was in order to raise funds for the Luton and Dunstable Hospital, Head and Neck Cancer Unit.

Anil Garcia will be attending our April meeting to get your views and to pass on what's been learnt to date.

Vocational rehabilitation has been described as a process whereby those disadvantaged by illness or disability can be enabled to access, maintain or return to employment, or other useful occupation (British Society of Rehabilitation Medicine, 2003).

The Cancer Reform Strategy, recognised the needs of, and lack of services for, people living with the side effects and long-term consequences of cancer treatment. As a result of this, the National Cancer Survivorship Initiative (NCSI) was established, led by the Department of Health and Macmillan Cancer Support.

A project group was set up to review the provision of vocational rehabilitation and develop a vocational rehabilitation service model that could be piloted.

Mount Vernon Cancer Network is a pilot site for the development of a Vocational Rehabilitation Model and work is now underway to discover the availability of employment support for people after a cancer diagnosis, the information available to staff to enable them to answer queries and concerns, and to employers to enable them to support their work force effectively.

Feedback is being sought from Patients and Carers on their experiences of getting back to work to enable the production and availability of effective and supportive help.

If you would like to take part in this project and have experiences that you feel could help plan for the future please contact the project lead on the details below. Feedback can be given either by Phone, email or Face to Face.

For further information please contact Project Lead � Anil Garcia on 07889205064 or via email: anil.garcia@nhs.net

It's that time again and the Head and Neck Social Group would like you to be our guest and join us for a drink and a buffet at our Xmas Party Wednesday December 15th.

You are very welcome to bring a guest with you. This is an open invitation to patients, carers, relatives, hospital staff and consultants.

Liza Pheazey will be running a Prize Quiz. The Rugby Club caterers are supplying the Buffet. There will also be a Raffle on the night to raise funds. The Rugby Club has a full bar at good prices. Come and enjoy some Good Company.

(If you don�t have transport let us know we might be able to help.) Contact Derek web@hansg.co.uk.

NB. Due to the severe weather in late November and December the team have been unable to train for the bike ride and have taken the reluctant decision to postpone the Half Triathlon until the Spring. More News Later

On the 22nd of December Sam Hunt and three friends will attempt to complete an unofficial Ironman Half-Triathlon in the Luton Harpenden Area.

This severe test of stamina and determination is in order to raise funds for the Luton and Dunstable Hospital, Head and Neck Cancer Unit.

Sam will be along to the Head and Neck Social Group Meeting on the 3rd of November to tell us all about the challenge and what it takes to prepare for it. Connor, Sam, Aran, and Seb have set up a just Giving Page http://www.justgiving.com/halfironmen.

For those of you who don't know Just Giving is safe secure way of giving that also credits the charity with a tax rebate on all donations given by UK Taxpayers. (Just Giving do not sell, use your details or send unwanted emails.

(Ironman & 70.3 are recognised as registered trademarks of WTC and are used to link to the WTC website for information)

To mark t

he countdown to Mouth Cancer Awareness Week between 14th and the 20th November 2010 the annual Mouth Cancer 10KM Awareness Walk took place in Kensington Gardens London on the 18th of September.

This year Three Members of the Head and Neck Team at the Luton and Dunstable Hospital completed the 10k walk. The sponsored walk attempts to raise awareness of mouth cancer.

Those of you who have been treated at the L&D will alread

y know the hospital�s head and neck oncology dietician Katrina (K-T) Martinelli. K-T has been the driving force behind a campaign to have a soft ice cream machine installed as part of the specialist cancer unit.

The machine has now been installed on the ward and is providing high calorie, high protein food to patients. As many readers will already know head and neck cancer sufferers often have difficulty eating especially just after treatment.

K-T explained the benefits. �Ice cream is an acceptable food for most people so our patients will have available at all times a food which will not only help them achieve their nutritional requirements but that is easy to eat and will not cause embarrassment in the process. Confidence in eating and swallowing safely will be restored much quicker.�

Mr John Pickles, Divisional Director of Surgery and consultant Ear, Nose and Throat surgeon at the L&D said,

�Head and neck cancer patients are often admitted to Luton & Dunstable hospital with pre existing, nutritional problems since the site of this disease makes people more vulnerable to malnutrition even before diagnosis. Nutrition plays a key role in successful treatment of cancer of the head and neck and the ice cream machine brings many benefits for our patients who can face a slow and arduous recovery after very complex surgery.�

The money to purchase the ice-cream machine was donated by head and neck cancer patients and the hospital will underwrite the future maintenance costs. Patients from the Cancer Service users and the Head and Neck Cancer Support Groups are backing the introduction of the ice-cream machine and will be promoting its use in the hospital.

Although its a simple idea the beneficial impact on patients cannot be underestimated. We hope this initiative will be rolled out elsewhere as it deserves to succeed.

The media also liked the idea with a TV crew turning up to talk with K-T and Ronnie Barbour inviting K-T on to the Nine on BBC 3 Counties. K-T turned in a great performance, which if you didn't catch, can be played in Windows Media Player from this site by clicking here. K-T and Ronnie. It will take a little time to load.

K-T took the Ice Cream Machine to the Foundation Trust's Annual Members Meeting on 20th September.

K-T is joined here by Spencer Colvin Chairman of the L&D and our very own James Lucas representing the Head and Neck Social Group.

Spencer Colvin is an enthusiastic supporter of K-T's CoolAid Project to improve the nutrition of Head and Neck Cancer Patients.

Hansg didn't miss the opportunity to rattle a tin for the CoolAid Project and we raised a few pounds towards maintenance of the machine.

To confirm the Head and Neck Social Group's support for K.T's Ice Cream project we are pleased to announce the formation of CoolAid.

CoolAid is the collective banner under which we hope everyone will come together to raise funds and awareness for K.T's project.

Luton Rugby Club be the first fundraisers to use the new logo at their Hawaiian Night on Saturday 30th of October.

We had another great day at the Luton Relay for Life event in Stockwood Park. Even though the weather in mid September can be variable the rain mostly held off and the sun shone on the Saturday.

Six or seven of us turned up from Hansg along with a few other faces that we recognised from other support and fund raising groups.

As usual Susan Blee was racing around forcing the whole thing to work. As the picture will attest, its almost impossible to stop her for enough time to tak

e her picture.

As has become a tradition for Dave and I we managed to get another picture of Dave with the Mayor and Kelvin Hopkins the local MP.

Click on any picture and it will take you to the collection where you can click on any thumbnail to see the full size pictures.

Luton Rugby Union Football Club have confirmed their commitment to the Head and Neck Social Group and the CoolAid Project which is the clubs chosen Good Cause for the season.

Alongside their own Club development fundraising, Luton Rugby Club will also use its events program to raise money for CoolAid.

The first of these events will be a Hawaiian Night, to celebrate the beginning of the season and the end of summer. Taking place on Saturday 18th of September 2010 the night will commence directly after the 1st XV match versus Hereford at Newlands Road, Luton.

All supporters will gain free entry and parking, bars open at Midday, game kicks off at 3pm.

The Club will be pre-selling wristbands for the Hawaiian Night wristband wearers will benefit from special prices at the bar. Wristbands will be available at �5 this week at the club and at the match on Saturday. With a live band starting at 5pm, food and full bar available throughout the night, a great evening is predicted.

The second event will be held on Saturday 30th of October, with details for this event being confirmed within the coming month.

For further information please contact the Luton Rugby Union Football Club Office on 01582 720355.

All of us have been diagnosed, treated or have cared for someone who has suffered from Head and Neck Cancer.

Some of us still have our sense of humour; some of us have even retained most of our intelligence. Some know how to cook, fix cars, sew, weld, paint and decorate, plumb, garden and possibly how to milk cows.

We can be grumpy sometimes, irritable at others. Sometimes we hate not being able to eat what we want. Other times we hanker after the way things used to taste. Occasionally we can be entertaining and good fun to be with.

We all have experience that we are happy to share. We all understand what its like to be launched back into the world with the collateral damage caused by surgery and radiotherapy.

We don�t really do that much, we meet, we often have a guest who has a relevant skill and we chat for a bit.

What we would like is for you to join us so that we can have a bigger and better group. In order to make the group a little more social we have moved our venue to The Luton Rugby Club which is close by J10 of the M1.

We made the move to somewhere with a bar (coffee is also available) because we know some people just don�t like hospitals.

Our venue is a quiet private bar at the club where we can socialise or have presentations without being disturbed.

We can be a big help to those of you just coming to terms with the speed and savagery of what happened to you and in return you can help us grow into something worthwhile.

If you are a carer you are welcome to come along with or without your charge and see how we can help. If you have been treated elsewhere you are still very welcome.