Category Archives: Meetings

C-Side Is On The Move!

Starting from our November 24th Christmas Lunch C-Side will be holding its meetings and other events at the House Project Centre located at 168 South Coast Road, Peacehaven BN10 8JH. We are where the pin is, below

Access to the rooms is via the foot-path to the right of the shop or via the House Project Centre’s own car park, accessible via Arundel Road and Bolney Avenue on the north side of the South Coast Road. There is also a free car park on Steyning Avenue. For those coming by bus from Brighton or Seaford you should use the 12 or 12A and the Bramber Avenue stop. The nearest stop for the 12X service is Roderick Avenue.

Feedback from the Lewes Folk Evening – Sat 14th May

On Saturday 14th May we were treated to a brilliant evening’s entertainment at the Lewes Folk Club upstairs in the Elephant & Castle pub. The star attraction was “The Old Firm Plus One” comprising Marilyn Bennet, Iris Bishop, Denise & Stuart Savage and Jim Ward. Other acts were Charlotte Olive & Richard Spong and Martyn Wyndham-Read. The Lewes Folk Club pledged the gate money ( a not inconsiderable sum) to C-Side several of whose members were pleased to attend a thoroughly enjoyable evening.

Nutrition Advice and Support from AITC

C-Side has a great working relationship with Albion in the Community (AITC); over the years we’ve had many visits from their experts who have spoken to us on physical exercise & health matters. We were very pleased to welcome Mari Clark to our meetings on Thursday 24th January 2022. She gave us an interesting and insightful guide on nutrition and what consitutes a healthy diet; this being such a vital area of interest for all those living with bowel and anal cancer and other digestive diseases.

To find out more of what Mari does click on the AITC logo above or on this link.

To learn more of Mari’s background and considerable experience go here.

C-Side Christmas Lunch 2019

Our Christmas Lunch will be on November 26th at 1.00 p.m. at St. Margaret’s Cottage.
Here is our delicious menu. If you would like to, please feel free to “bring a bottle”.

 

A Talk Given By A Consultant Colorectal Surgeon From The RSCH.

Notes from the talk given by “JC” at the C-Side meeting on Tuesday 30th October, 2018

JC gave a detailed, personal and informative talk, answering all the questions we had prepared for him:

  • How do surgeons combat tiredness?  What is the limit on hours they can work?
  • Do surgeons get nervous?
  • Regarding long term symptoms : what ought we to worry about?
  • One of our members has a split in the wound following a stoma.  It requires packing every day.  He had no warning that this might be a result of the operation.  How common is this situation?
  • How do you deal with a blocked ileus?
  • Can you explain the research you are doing  in Italy regarding the colon when re-sectioned.
  • What is the current expected waiting times for treatment  and the situation regarding cancellations?
  • How much theatre time are surgeons allotted each week?
  • How are the cuts affecting Bowel cancer operations?
  • Do you have any statistics for the year regarding the number of operations/ survival rates/ costs?

The personal questions provided an insight into the work of JC and his colleagues.  He made the following points:

  • Operations can take between 1.5 and 6 hours, and can last 9- 10 hours.  He can get tired and can deal with two major cases in one day.  There are no limits to the hours that he works, although it is supposed to be 56 hours.
  • He does get nervous as he has an understanding of all that can go wrong.  He downplays these but is often working to within fractions of a millimetre.  Sometimes difficult decisions have to be made such as whether to sacrifice the spleen instead of the bowel.  There is a high level of stress in the operating theatre which is difficult to differentiate with nervousness.

Regarding surgery:

  • There is altered bowel function after surgery that can take anything from 8 weeks to 2 years for the system to settle. Lower rectal surgery can cause difficult day to day functioning.  Complications in the anal canal system has a risk of infection.  Perineal wound surgeries can have more prolonged problems.  This is not something that can always be predicted.
  • Ileum surgery often causes vomiting and there can be a danger of aspirational pneumonia.  The contents of the bowel must be kept out of the lungs.  Tubes are inserted to alleviate vomiting.  Most blockages to the ileum correct themselves and are often twisted or pinched.  If there is a food bolus obstruction this may require surgery.  If there is a parastomal hernia as a result of a stoma where several bits of bowel stick out outside the muscle, it can be decompressed to see if it will settle.  Further surgery may be necessary.
  • Italian research has shown that a fluorescent substance can show up under ultraviolet light indicating blood supply to the bowel during surgery.  This can very effectively show whether there is a sufficient blood supply for an operation, which can reduce the likelihood of failure during  anastomoses (join in the bowel).  Anastomotic failure can be reduced from 10% to 1.5% using this system.  At present the Consultant Colorectal Surgeons are trying to persuade the Trust  to use this technology.  NICE should make it a mandatory part of the surgery.  It also has benefits in other surgeries such as gall bladder surgery.  This massive piece of research adds about 3 minutes to an operation and costs about £10,000 – £100,00 with the higher figure being for a laparoscopic stick.  It makes operations much safer.

Economic and administrative considerations:

  • Brighton does have an issue with waiting times for Colorectal Cancer surgery but is experiencing the best situation for years – diagnosis, decision to treat and date for surgery is approximately 2-3 weeks.  But there are still delays before the decision to operate as this depends on colonoscopies, MRI scans and CT scans.  At present there is a shortage of scanners and radiologists.  Ideally diagnosis to surgery should take 4 weeks.  However, although cancer takes priority, there are cancellations when the hospital is too full or overstretched.
  • In Brighton of 300-400 patients are diagnosed, 70-100 need surgery.  There are  150-250 Bowel surgery operations annually.  4 surgeons are rectal specialists and 6 specialise in colonic surgery (the 4 who do rectal surgery plus 2).  They are audited nationally and outcomes are well within the accepted range of mortality.
  • Fortunately government cuts do not affect serious health problems such as cancer, heart disease and diabetes.
  • As a final note, JC explained that Dukes staging (A, B and C) is now historic.  Now TNM (Tumour, Node and Metastasis) staging is  used to describe where a patient is in his or her bowel cancer.

Family History Service

At our June meeting KIrtsteen Daly gave a talk on the role that the Family History Service and genetics science plays in establishing the risk of inheriting diseases – particularly colorectal and similar cancers. It was a brilliant and thought provoking presentation and Kirteen has given permission for her notes to be recorded here in video form.

Please use the control bar at the bottom of the screen to manage the video playback, sound level etc;, it may also be viewed full-screen.

 

Here’s some related links (just click on the icon):-

The Colorectal Family History Service is based at the Royal Sussex County Hospital. The service assesses your family history of cancer to determine appropriate screening and whether or not genetic investigations are possible within your family. The service is lead by Dr Suzi Green and managed by Family History Nurse Specialist Kirsteen Daly. A referral from your GP or hospital consultant is required.


We’re passionate about our guts! Guts UK’s vision is a world where digestive disorders are better understood, better treated and everyone who lives with one gets the support they need.

 

The Hereditary Colon Cancer Foundation is a nonprofit organization serving the hereditary colorectal cancer community. Our vision is to be a beacon of light – extending life expectancy, enhancing life quality, and instilling hope in those diagnosed with hereditary colon cancer syndromes.

LSUK was founded in early 2014 by a group of people that originally met on a social media support group. Being frustrated by the lack of information and stories of erratic screening regimes throughout the UK, we came together to change things for people affected by Lynch Syndrome for the better.

 

Molecular testing strategies for Lynch syndrome in people with colorectal cancer. Diagnostics guidance [DG27] Published date:

Are you supporting someone going though cancer?

You might hear the term ‘carer’ and think that’s not you, but if you are supporting someone with cancer there is information and support that is available for you.

On Friday June 16th as part of Carers Week we’re holding an event at the Macmillan Horizon Centre where people can find out more about the different types of support available for people caring and supporting someone with cancer.

At The Macmillan Horizon Centre, 2 Bristol Gate, Brighton, BN2 5BD (across the road from the Sussex Cancer Centre at the Royal Sussex Hospital in Kemptown, Brighton)

From 10:30 – 13:00 there will be:-

  • opportunities to meet others who are supporting a loved one
  • information about support the Horizon Centre offers
  • a chance to be pampered (ear acupuncture, facials, seated acupressure massage and make-up make over by Boots Nr.7 advisors to get the summer glow)
  • information stands from support organisations across Sussex
  • Refreshments available

From 13:30 – 15:00 there will be:-

A Focus Group session – an opportunity for to people caring for someone with cancer and also carers with a cancer diagnosis, to discuss information and support available and explore any additional needs not being met.

If you are not able to attend the focus group but would like to have a say about the needs of carers please do let us know and we would be happy to arrange to come along to your group or organisation to run a focus group session.

To reserve a place: please e-mail horizoncentre@macmillan.org.uk or phone 01273 468770 or visit us at The Macmillan Horizon Centre, 2 Bristol Gate, Brighton, BN2 5BD (across the road from the Sussex Cancer Centre at the Royal Sussex Hospital in Kemptown, Brighton)

You can find out more information about the Macmillan Horizon Centre at www.macmillan.org.uk/horizoncentre and details about carers week at  www.carersweek.org

With Kind regards, Jane.
Jane Viner
Macmillan Engagement Coordinator – South East
Email: jviner@macmillan.org.uk
Telephone: 07790 015 448

C-Side’s 2017 AGM – Governing Documents

During our forthcoming AGM on 31st January 2017 we will be asked to re-affirm our “Governing Documents”. There are two of them: our Constitution and our Aims & Ojectives. What they are about is self explanatory, but they are important; they govern how we are structured, what we want to achieve and how we should go about it. Please read them by clicking on the icon or the title along-side of it. If there are any changes you think are merited then please advise a committee member, or contact the site administrator via the Contact Us page of this website, in order that the proposal can be put on the agenda for discussion the meeting.

C-Side is not primarily a fund-raising charity, but we do need some cash to keep going and paying for those little things that make meetings more enjoyable and occassionally celebratory. To see how we’ve spent our money this past year then please look at a summary of our accounts.

C-side Constitution

 

 

C-Side Aims and Objectives

 

 

 

C-Side’s Birthday Bash

 

Bash Menu1Shown above is the menu for our celebratory dinner on the 6th September. If you are a C-Side member you and your partner are warmly invited to come along to an exceptional evening of food, drink and conversation. If  you have not already done so, please select from the Starters, Mains and Desserts lists and email C-Side showing, against your name(s), the three numbers of the items of your choice. Thanks to a grant from Macmillan and the generosity of a benefactor this is free to C-Side members and their partners, you are only required to pay for drinks.

The Waterfront Brasserie (otherwise, the Brasserie Fish & Grill) is located on the Boardwalk facing the marina. As an aid to navigation, the large picture below shows the entrance and the two pictures beneath shows the views on either side of it.Grill1Brass 1Brass 5

 

 

 

 

 

 

 

 

 

There is, I understand, free parking for 4 hours in the Marina’s multi-storey car-park. The Marina is quite well served with public transport, the No. 7 has a regular service, you could check for other buses and detailed time-tables by checking out to the Brighton Bus Company’s Journey Planner.