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Coffee & Cake Morning Fund-Raiser, June 2019

Our Jazz and Coffee morning on Saturday 22nd June was a HUGE success. Members, especially Erika baked a fabulous range of wonderful cakes. We even had a ploughman’s lunch with delicious home baked bread. The weather shone blissfully, so we could sit in the pretty garden at St Margaret’s Cottage and the band “Work in Progress” provided a background of perfect music for a lazy Summer’s day. Here’s a sound clip of the band, recorded on the day; something  to remind those who were there what a great day it turned out to be.

 

We had an enormous raffle, again thanks to members’ generosity and to Jim Gray who managed to get local stores to contribute several prizes. Our grateful thanks to all those who helped on the day by setting things up, washing up and clearing away. As soon as we know how much was raised by the event, we shall publish it on this website.

Go to our Photo Album for more memories of the day.

Bowel Cancer Awareness Event- Saturday 6th April, 2019

AN EVALUATION

This all-day event took place in the foyer of the ASDA stores in Hollingbury, Brighton.  It was funded by Macmillan.  Our aim was to raise awareness of the first signs of bowel cancer amongst the public and to ensure that they knew what to do should the signs be positive.  It was not a fund-raising event.

The event was a multi-agency collaboration with C-Side working with the following organisations:  The Macmillan Horizon Centre; Albion in the Community (the charitable branch of the Brighton and Hove Albion Football Club); the Sussex Bowel Screening Programme; the Colorectal Nurse Specialist team from The Royal Sussex County Hospital and members from C-Side Colorectal Cancer Support Group.

Twenty volunteers from all the participating groups gave up their time over the day, engaging with the public and distributing leaflets and information.  They were well-prepared with shared information and advice on how to approach the public.    When specific questions were asked about Bowel Screening or advice about Bowel cancer was required, volunteers referred people to our clinical specialists: the Colorectal Nurse Specialists or the Clinician representing the Sussex Bowel Screening Programme.  These specialists recorded some of the  “meaningful conversations” to show our sponsors the sort of impact we were having.  We had a large pull up banner, wore t-shirts that showed a unified presence and a table of information in the form of leaflets and posters. We also had tote bags printed by C-Side in which we could put leaflets, and AITC provided us with even more tote bags and pens as freebies.  Furthermore, ASDA were extremely generous and provided several trays of free fruit to support us with our healthy eating message.

While it is difficult to be precise about our impact, we ascertained that we engaged with more than 1000 members of the public between us during the day.  Even people we did not talk to took leaflets and saw what we were about.  Despite being very busy, the clinical specialists recorded 30 “meaningful conversations” – just a sample of the sort of questions we were asked during the day.  People were generally very agreeable and interested in what we were offering and all involved thought it was a very worthwhile event.

Some specific comments received by participants included:

  • It was a well run event
  • Volunteers were given a clear direction
  • There were more than enough volunteers but the venue (some thought) was restrictive, so that it sometimes felt crowded
  • The footfall was high
  • The separate, private space considered by the nurses was not possible
  • The t-shirts were very effective and immediately identified volunteers
  • We had leaflet overkill! Next time (as we hope there will be a repeat) we will be more selective in our choice of leaflets.
  • In the future we might do a smaller “pop-up” event in a range of different venues.

C-Side is only a small charity, but we feel it was a very worthwhile event to have run.  While we clearly had an impact on members of the public, perhaps our biggest achievement was to get the different participating groups working together collaboratively to really raise awareness of bowel cancer.

Advance Directives

On 30th April one of our members, Don, gave a presentation on Advance Directives. The presentation was as shown below; click into the image then use your keyboard arrow keys or mouse to advance the content. Several links are included showing in yellowish-green text; clicking on them will open the link in a new tab. When you’ve finished with the link’s content, close the tab to return to the presentation.

[embeddoc url=”http://c-sidebrighton.org/wp-content/uploads/2019/04/Advance-Directives-Presentation-Final.pptx” viewer=”microsoft”]


In addition, here’s two more links to papers related to the subject:-

Advance directives discussion BMJ: Some of the ethical and legal issues

Advance-Decision-Pack-v2.1: Advice on how to go about formulating and establishing these Directives.

Prehabilitation – Improving Cancer Treatment Outcomes

Listen to this BBC Inside Health sound clip on Prehabilitation. It’s about 15 minutes in length, but well worth the listening as it describes just how being as fit as possible, before beginning surgery or chemotherapy treatment, increases the favourable outcomes of that treatment.

In thus excellent podcast series Dr Mark Porter demystifies health issues, separating fact from fiction and bringing clarity to conflicting health advice, with the help of regular contributor GP Margaret McCartney. Click on Radio 4 image to see what other health podcasts are available.

To listen to the part of this one, dealing with Prehabilitation, use the play/pause button to play the clip and the volume slider to adjust for listening comfort.

Bowel Cancer Awareness Event in Brighton – April 6th 2019

Many of you reading this, either yourself or someone you know, will have been affected by colorectal cancer. Either directly or indirectly, you will have experience of the presentation of symptoms and the subsequent diagnosis and treatment of a worrying disease. You will know, but many others may not, that despite Bowel Cancer being the second biggest UK’s killer cancer it is eminently treatable and curable, especially when diagnosed at an early stage.

It is vital, then, for the general good that the public become aware of Bowel Cancer symptoms – some of the more common amongst which include:

  • Bleeding from the bottom and blood in poo
  • Persistent and unexplained change in bowel habit
  • Sudden and unexplained weight loss
  • Being easily fatigued with no obvious reason or cause
  • Pain or a lump in the tummy

April has been set aside nationally to educate the public and raise awareness of these symptoms. Bowel Cancer UK have taken the lead in this and have a variety of educational and awareness programmes set up for April, this link shows their strategy.

For its part C-Side (being representative of Bowel Cancer patients in the Brighton area) felt that there might be more that could be done locally. So, in association with Albion in the Community (AITC), Macmillan Horizon Centre and Bowel Cancer Screening & Colorectal Nurse Specialists from the Royal Sussex University Hospitals, we decided to present a Bowel Cancer Awareness Event here in Brighton. The management from ASDA supermarket in Hollinbury have kindly offered the use of their foyer where we (volunteers and clinical experts) will be on hand to answer questions from the general public on matter related to Bowel Cancer, with the particular objective of educating them in identifying the symptoms listed above, should they ever arise. The event, on Saturday 6th April 2019, will take place from about 10.00 a.m. to 5 p.m.

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.

Cancer Recovery Package

On 29th March 2013 BBC News on-line broadcast this:-
“All cancer patients should receive a “recovery package” at the end of their treatment offering ongoing support, the Department of Health (DoH) has said. It calls for care targeting patients’ financial, mental and physical needs. Macmillan Cancer Support, which helped develop proposals for a recovery package, estimated that about 200,000 people were not getting a package of support following their treatment.” You can read the entire news report here:  http://www.bbc.co.uk/news/health-21968714

Since then the National Cancer Survivorship Initiative (itself set up in 2008) and Macmillan have developed and refined the Recovery Package; NHS England are encouraging  all CCGs, as a matter of urgency to adopt it. Whilst there is no lack of enthusiasm and support amongst front-line NHS clinical staff, the full implementation of the programme is tardy; during a future meeting we hope to be able to report on the actual progress being made. In preparation for this you are invited to click on the above diagram, you’ll be directed to more details of the Package. In summary it has four main components:-
a) Holistic Needs Assessment & Care Planning.
b) Treatment Summary
c) Cancer Care Review.
d) Health and Wellbeing Events.

For a further description of the Recovery Package and one presented in a slightly more patient friendly fashion click on this; there are one or two faces in it that you may recognise!

Life Kitchen

The idea of Life Kitchen is simple, but enormously persuasive. As anyone who has undergone chemotherapy will tell you, one of the most frequent and demoralising side-effects is a loss or dramatic change in the sense of taste. Life Kitchen is designed to try to help mitigate that loss, to teach cooking skills and recipes that might restore some pleasure in food, and to do so alongside others facing similar challenges.

Read more about Ryan Riley, who lost his mother to cancer, and his achievements in gaining the interest and attention of well known chefs and TV cooking personalities such as Nigella Lawson, Hugh Fearnley-Whittingstall and Ton Cenci, who features particularly in this recent article in the i newspaper, or this one in the Guardian newspaper.

Screening for Bowel Cancer – An Update

Presented by Nicola Nye, SSP and Theresa Ayres Lead SSP to Mid Sussex Bowel Cancer Support Group 17th July 2018

The Sussex Bowel Cancer Screening Programme was introduced in 2008 to lower the mortality rate of those people with CRC and bring it in line with the rest of Europe. We serve a screening population of approximately 978,000 people which incorporates two Trusts – Brighton and Sussex University NHS Trust and East Sussex Healthcare NHS Trust. Under the umbrella of Bowel Cancer Screening there are 2 screening Programmes

Bowelscope – once in a life-time Flexible Sigmoidoscopy offered to all those aged 55 years old in our catchment area. This test looks at the left side of the bowel  and can remove polyps which  means you are less likely to get bowel cancer as we know that 70 -80% of bowel cancers start in this area.

Faecal Occult Blood test (FOBt)  – 60-74 year olds

Presently participants complete a home sampling kit called a Faecal Occult Blood test, sending off a sample of faeces to the Screening Hub laboratory in Guildford. The kits are sent out every 2 years and If the sample is positive for a pigment found in blood the participant is offered a clinic appointment with a Specialist Screening Practitioner for review. They are then assessed for suitability for a colonoscopy. In some instances a CT scan of the Colon may be discussed instead.  

Colonoscopy is the gold standard procedure offered because it allows us to diagnose and treat certain abnormalities. A colonoscopy will identify 98% of abnormalities whereas a CT scan of the colon is comparable but could mean a colonoscopy is still required to remove any polyps or take tissue samples.

 The stool test kits are sent out from a central booking hub in Guildford. At a national level there are plans for the FOBt test to be changed to a more sensitive and specific test namely, the Faecal Immunochemical test (FIT). . The age group offered FIT may be extended to include younger patients possibly from 55 years; this is not confirmed at present.

Due to the more accurate outcomes of FIT and the fact that the home test will be easier to undertake the suggested impact on screening will be an increase in uptake. This will result in more referrals for   colonoscopy and increasing support services, in particular the pathology service.   The new test will be easier to undertake at home so it is expected that uptake will increase resulting in more of the Sussex population taking up screening with the benefits of early detection of any abnormality.

At present after the age of 74, people can choose to opt in to Bowel Cancer screening by phoning the Guildford programme hub on 0800 7076060 and requesting to be sent out a test kit.

Those diagnosed with bowel cancer within the screening programme who remain within the age range are offered an FOB test 2 years after diagnosis. At this time, they may still be under the care of the cancer services and may choose not to participate in screening at that time; those overage can also request a test kit by phoning the Hub.

We promote awareness of symptomatic changes in health. Sometimes there are no symptoms of bowel cancer in the early stages. We encourage people to report any rectal bleeding, change in the frequency of their bowel habit and any abdominal pain to their GP rather than waiting for the next round of bowel cancer screening. We encourage people to be aware of life style changes that can influence their health and reduce the risk of bowel cancer; Such as stopping smoking, reducing alcohol intake, increasing physical activity and increasing intake of fruit and vegetables.

The Specialist Screening Practitioners have completed extra training to undergo this role, they are qualified senior nurses who also offer support when a patient is first identified with a suspected cancer and who coordinate the progress of the patient from presenting the patient at the Multi-Disciplinary Meeting (MDM), liaising with the Cancer Nurse Specialists, and organising any further investigations or informing the patient of our suspicions.

Some facts and figures from the FOBt programme

In 2017 in the Sussex programme the uptake was 59.55% (uptake is the number of eligible participants who return the FOBt kit)

The positivity in 2017 was 1.18% (positivity is the number of kits testing positive, from all those returned)

In 2017 the Sussex programme undertook the following investigations:-

663 colonoscopies

44 CT colonogram

20 limited colonoscopies /flexible sigmoidoscopies

Cancers detected since the start of the programme in Nov 2008 to date = 558

The BCSP nationally, since inception in 2006 has detected 29,134 cancers to date.

In Sussex since 2008, left sided cancers detected = 453

In Sussex since 2008, right sided cancers detected = 103

Treatment

Surgical 389

Endoscopic 79 – removal of polyp cancers

Non-invasive 49 – includes chemo/radiotherapy

If you have any questions or would like further information please email BCSP@bsuh.nhs.uk

Macmillan Coastal Garden Trail – 28th/29th July 2018

Take part in the 7th Coastal Garden Trail to raise money for Macmillan’s Horizon Centre.

Driftwood Fundraising Group is holding the 2018 trail on the weekend of 28 and 29 July. Popular gardener, Jim Buttress, will open the trail at 11am at Driftwood in Seaford on the 28 July. Click on the image to find out more on the important event taking place on our Sussex doorstep.

Now, these are all going to be fantastic and C-Side wouldn’t want to promote any particular garden – but you might want to have a look at Annelise’s poster.