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:

SBS – Financial Wellbeing Webinars for People affected by Cancer and other Illnesses

St Bernard Support (SBS) provides assistance to people affected by life limiting illnesses such as cancer, heart disease etc. The people they help include people diagnosed with life limiting illnesses, their families and their carers. They also provide assistance and training to medical professionals and other organisations (charities, support groups etc) to enhance their ability to support people.

On 14th June and 25th June 2018, SBS will be hosting Webinars covering the following topics at the stated times:-

  • 11 am – Pensions
  • 12 pm – Wills, Trusts & Lasting Powers of Attorney
  • 2 pm – Welfare Benefits

Please contact admin@s-b-s.org.uk or call 0800 7720723 to participate in the webinar. Click on the logo to connect to their website and find out more.

Free Macmillan Training Courses

Jane Viner (Macmillan Engagement Lead – South East) would like you to be made aware of this programme of training opportunities. To see a brochure for details of all courses to be run throughout the South-East click on the picture. Here is a list FAQs (frequently asked questions). As you can see, some courses are designated for Macmillan and Health care professionals, but those suitable for Cancer Support Groups, Macmillan Volunteers and People Affected by Cancer are summarised below:-

Listening and Responding
We all like to think of ourselves as good listeners, but do you want to do more to develop our listening skills, so that you can better support people affected by cancer? This workshop will help you to identify the differences between listening and other helping strategies such as providing information and advice as well as developing and practising your listening and responding skills in a supportive environment.

5th February 2018 – Guildford
15th June 2018 – Maidstone
21st September 2018 – Brighton


 Speaking with Confidence
This one day introductory public speaking workshop will bring out your natural speaking strengths.
Learning outcomes:-

  • Learn to speak with clarity and confidence.
  • Address fears and overcome nerves.
  • Learn how to engage an audience.
  • Use your experience to write a dynamic speech, structuring your content to greatest impact and then deliver a speech with confidence and authority.
  • Dealing with questions during speaking.
  • Applying these skills to next steps in your volunteering or public life.
  • Find a way to enjoy speaking.

14th March 2018 – Guildford
6th April 2018 – Maidstone
9th May 2018 – Brighton


Group Facilitation Skills
This one day workshop will help to develop your skills in working with groups in a facilitative style.
Learning outcomes:-

  • Create a positive environment for group learning.
  • Identify key skills and qualities of a group facilitator.
  • Enhance communication and influencing skills.
  • Learn how to manage challenging behaviour
  • Raise awareness of learning styles and the impact of group dynamics.

27th April 2018 – Stevenage
6th June 2018 – Guildford
29th August 2018 – Eastbourne


 How do I apply?

To book on to a course or for further details about the venue, facilities, and timings, please contact your Learning & Development Team on: LondonSELearning@macmillan.org.uk  or Tel: 01904 756447 


Help develop How Macmillan Engages with People Affected By Cancer and Local Communities

We would like people living with cancer to have a role in shaping the future of Macmillan, this work will help us to understand the best ways of including people living with cancer in the planning, delivery and evaluation of our work in the community.
We are engaging people living with cancer in a number of different ways. We are visiting local support groups and asking for opinion and feedback from members during the meeting. We are also carrying out 1 x 1 sessions with people if they are unable to join us in a meeting.

If you would like to get involved and for us to come along to your support group or meet you on a one to one basis please do let me know: jane Viner – Macmillan Engagement Lead – jviner@macmillan.org.uk

We would like to learn about the experiences and needs of LGBTQ people in Brighton and Hove and Sussex who are affected by cancer 

Macmillan Cancer Support and Brighton & Hove LGBT Switchboard are working together to engage with the local community to learn about the experiences and needs of LGBTQ people in Brighton and Hove and Sussex who are affected by cancer.  This engagement work will be used to inform how LGBTQ people affected by cancer can be best supported; and to identify areas where improvements to patient experience can be made through Macmillan and in collaboration. 
Switchboard has created two surveys as part of the project and would love to hear from as many people as possible.  One is for LBGTQ community members affected by cancer (including partners, carers and family members of people with cancer); the other is for professionals (including volunteers) supporting LGBTQ people affected by cancer.  Switchboard is also holding two focus groups to learn more about the experiences of these community members and professionals.  Take either of the surveys to receive details of the focus groups, or email chris.brown@switchboard.org.uk.

Survey links:
LGBTQ community members survey: https://www.surveymonkey.co.uk/r/J7H7R7X
Professionals supporting LGBTQ people affected by cancer survey: https://www.surveymonkey.co.uk/r/J98DWHT

Have Your Say About Macmillan’s Community Engagement Values and Principles

At Macmillan Cancer Support we understand how important it is for people living with cancer to have their views and opinions heard, particularly about their cancer experience. We want to be clear in our commitment to engaging with people living with cancer and their families in their own communities. As a part of this commitment, we are developing a set of community engagement values and principles and we need to ensure that they are meaningful and have people living with cancer at the heart of the process.
For us to do this well, we need to really understand how you feel about the values and principles that we’re proposing. We’d really like your feedback on what they mean to you; whether we have missed something important; what it would look like to you when they are working well and anything else you think we need to know. 


So now you’re ready to get involved, we’d be grateful if you could take a short survey (it shouldn’t take longer than 10 – 15 minutes) via the following link.  https://www.surveymonkey.co.uk/r/EngagementVP


If you would like more information about any of the above please do let me know.

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

Administrator for South East Service Development Team
Email: south&eastadmin@macmillan.org.uk
Telephone: 01904 756 463
Address: Macmillan Cancer Support, 3 Fawcett Street, York, YO10 4AH

 

 

David Schneider talks to palliative care consultant Kathryn Mannix

David Schneider is terrified of death. In his two editions of One to One, he wants to try to overcome his fear by talking to those who have first-hand understanding of dying. In this programme, he talks to Palliative Care consultant, Kathryn Mannix. With almost forty years of clinical experience and witnessing over twelve thousand deaths, she believes that a ‘good death’ is possible even when you are seriously ill. She explains the process of dying to David. This, she believes, if accepted by the patient, removes much of the anxiety and fear surrounding the end of life.

 To listen to a short, edited, clip from this episode just operate the controls below:-


Jenny Diski, a writer, died in 2016. She was also interviewed a few months before her death by David Schneider about her struggle with cancer and her feelings knowing that death was approaching.  To read and hear David’s interview with her please visit this page.

The Elephant in the Room?

In this unprecedented book, palliative medicine pioneer Dr Kathryn Mannix explores the biggest taboo in our society and the only certainty we all share: death.

Told through a series of beautifully crafted stories taken from nearly four decades of clinical practice, her book answers the most intimate questions about the process of dying with touching honesty and humanity. She makes a compelling case for the therapeutic power of approaching death not with trepidation but with openness, clarity and understanding.

With the End in Mind is a book for us all: the grieving and bereaved, ill and healthy. Open these pages and you will find stories about people who are like you, and like people you know and love. You will meet Holly, who danced her last day away; Eric, the retired head teacher who, even with Motor Neurone Disease, gets things done; loving, tender-hearted Nelly and Joe, each living a lonely lie to save their beloved from distress; and Sylvie, 19, dying of leukaemia, sewing a cushion for her mum to hug by the fire after she has died.

These are just four of the book’s thirty-odd stories of normal humans, dying normal human deaths. They show how the dying embrace living not because they are unusual or brave, but because that’s what humans do. By turns touching, tragic, at times funny and always wise, they offer us illumination, models for action, and hope. Read this book and you’ll be better prepared for life as well as death.

(n.b. the above review is by Goodreads – for further information go here. The book is also available in the UK from other on-line sources such as Amazon and stores such as Waterstones).

Cancer Health & Wellbeing Event at the AMAX

On Tuesday 21st November Albion in the Community (AITC), B&H CCG, staff from BSUH, the Macmillan Horizon Centre and many more are bringing you an event where all local people living with or after cancer can find out about the wide range of support and services available to you, your family, friends and carers.

The morning is given over to all those involved in the provision of support and services where they showcase what they can offer you. The afternoon runs two concurrent streams of expert presentations which you can choose between.

Click on this to see the event programme in greater detail.

Attendance at the event is entirely free and includes lunch and refreshment. The Brighton Bus Company are even offering a number of free tickets. Remember that this event is open to all those affected by cancer and in need of help and advice, this includes family, friends and carers as well as patients.

You must register soon so don’t delay;
phone 1273 668591 or sign up via this link.

 

HELP US TELL OUR STORY!

On behalf of the Macmillan Horizon Centre

Could you help us tell the story of the difference we make?

∼◊◊ WORKSHOP ◊◊∼

for Horizon Centre users and volunteers

Friday 27 October, 11am – 1pm with free lunch provided

 The Horizon Centre is here to make as much difference as we possibly can to people affected by cancer across Sussex.

Throughout October we’re trying to map out all the differences we make – to those who visit the centre and those we contact out in the community; to those who volunteer with us; and to our various NHS partners. After that we’re going to plan how we can measure the difference we make (our impact) and tell others our impact story.

We’re running a workshop to understand different views about how we make a difference and would love to invite you to attend.

Click on this to see the poster

What will you be asked about if you take part?

This workshop will look at our story from the perspective of those who benefit from our support.  We’ll chat as a group and look at questions like …

  • What difference do YOU think we make and HOW do we make a difference?
  • Are there OTHER THINGS we could do to make a difference?
  • How could we involve you and others affected by cancer in measuring our impact and telling our story in the future.

What will happen in the workshop?

The workshop will be delivered by someone independent from outside the Horizon Centre and will involve discussion, feedback, meeting others who use the centre or volunteer with us, sharing ideas and views, probably sticking post-it notes on the wall and definitely eating cake! You can contribute as little or as much as you like without pressure. We want it to be an interesting and enjoyable session where everyone can take part and all views and ideas are welcomed.

Please let us know if you’d like to attend. If you can spare time and come along, please e-mail horizoncentre@macmillan.org.uk  or call 01273 468770

With Kind regards.

Jane Viner
Macmillan Engagement Lead – South East

‘LET FOOD BE THY MEDICINE AND MEDICINE BE THY FOOD’ Hippocrates

When I heard last April that the Macmillan Horizon Centre was offering a short cookery course for cancer patients, I immediately decided to enrol, together with Joan, also a C-Side member.

‘We are what we eat’: Hippocrates, the father of modern medicine, understood this 2,500 years ago!

Today, we all know the importance of eating a balanced diet, but this is especially crucial, without a doubt, following a debilitating operation or whilst undergoing medical treatment, not forgetting the stress that being diagnosed whit cancer can also create in the first place. A healthy diet, with the right vitamins and minerals can make such a difference to our well-being and recovery, both physically and mentally. Anxiety and depression can actually, on occasions, be linked to a poor diet. So, apart of course from medical treatment, seriously paying attention to what we are eating, at a time when we may feel the least like doing so, can give us the best chance to recover from this illness, especially as a positive mental attitude is so important for the healing process to take place effectively.

The course we attended last April was divided into 4 sessions of 2 1/2 hours each, over a period of 4 weeks, described as: ‘Eat a rainbow’, ‘Breakfast boost’, ‘Protein positive’ and ‘Quick and easy meals’. The aim of the course was to help us achieve a well-balanced diet, according to our needs, from breakfast to main meal, by putting together a collection of reasonably simple recipes that we could realistically be able to prepare in our own home, bearing in mind that when you are not feeling well, you may not feel like cooking, especially if it involves preparing a complicated dish! Tiredness and not feeling like eating at all can also be an issue, so the recipes were light but delicious and nutritious, and fun to prepare.

The course also provided an amazing opportunity to ask any questions from an expert nutritionist in a relaxed and friendly atmosphere. This is so important for anyone recovering from any form of cancer, but especially from bowel cancer.

It was organized by Emma, the Cafe Manager at the Horizon Centre and Mhairi, a registered dietitian, not forgetting the Centre’s volunteer staff, always on hand to help with anything else needed.

The first half of each session was spent preparing the food. All the ingredients (all fresh and of top quality!) were kindly provided by the Centre. We were all given several choices of recipes, according to our preferences. We were also handed various very informative food fact sheets (e.g. ‘A closer look at red meat’ and ‘fruit & vegetables – how to get five-a-day), and we were also introduced to ‘mindful eating’.

The second half was spent eating together the food we had just prepared. This was a great social aspect of the course. There is nothing more powerful and uplifting than to share a meal with someone who has gone through the same life changing experience as yourself, whatever this may be.

Furthermore, the first floor room at the Horizon Centre is so bright and spacious, it was really pleasurable to have a leisurely meal in such an environment. Everything is brand new, the kitchen and cooking utensils all shiny and immaculate… all conducive to give you a sense of normality and really help you start enjoy life to the full again.

In conclusion, I would strongly recommend this course to anyone, but especially someone recovering from bowel cancer. We are so blessed, in spite of our health problems, to now have a place like the Macmillan Horizon Centre on our door step, offering us all these facilities. I am personally very grateful to everyone at the Centre for their help and dedication. This course, along with C-Side of course, has definitely played a part in my recovery. I am glad I did not let this great opportunity pass me by. (Nicole Pendlebury, September 2017)

Below, an example of a very easy, but delicious recipe, a high protein meal with healthy fats from an avocado:-


Tuna, avocado & quinoa salad:- (prep: 5 mins / cook: 20 mins)

INGREDIENTS:-

100g quinoa,
3 tbsp. extra virgin olive oil,
Juice 1 lemon,
1/2 tbsp. white wine vinegar,
120g can tuna drained,
1 avocado stoned, peeled and cut into chunks,
200g cherry tomatoes on the vine, halved,
50g feta crumbled,
50g baby spinach,
2 tbsp. mixed seeds, toasted 

METHOD:-

  1. Rinse the quinoa under cold water. Tip into a saucepan, cover with water and bring to the boil. Reduce the heat and simmer for 15 mins until the grains have swollen but still have some bite. Drain, then transfer to a bowl to cool slightly.
  2. Meanwhile, in a jug, combine the oil, lemon juice and vinegar with some seasoning.
  3. Once the quinoa has cooled, mix with the dressing and all the remaining ingredients and season. Ready to serve!

Bon appetit,

Nicole


Keep a look out on this site for details on the next ‘EAT WELL, FEEL BETTER’ course at the Macmillan Horizon.

Denise’s Story

I have survived four cancer operations, spaced every 2-3 years since 2010.  The likelihood of a recurrence is considerable so I have learned to live with this.  Each operation involved a resection to my large bowel, although the cancer was in my peritoneum (the area inside the abdomen but outside the bowel).

More accurately, I have cancer of the appendix – Pseudo Myxoma Peritonea or PMP for short.  It is rare and starts at the end of the appendix.  When the tumour burst in 2010, cells were sprayed all over the peritoneum and they lurk there for years, hence my acceptance of a probable recurrence. 

It was almost impossible to diagnose as initially the tumour didn’t show up on a CT scan and of course a colonoscopy didn’t detect anything outside the bowel.  My first operation was as a result of an elected appendectomy – I knew something was wrong and for a year or more was told it was probably a grumbling appendix.  The tumour at the end of the appendix had penetrated the bowel, but not the lymph nodes, so it was a Dukes B diagnosis.

The tumour was removed, and I experienced 6 months of chemotherapy which virtually wiped out half a year of my life.  I was unable to do anything. I was totally without energy and with painful neuropathic symptoms in my mouth, hands, lower legs and feet.  The tumour returned in 2012 and I underwent a second operation, again at Brighton RSH.  But in 2014 yet another tumour developed and I was referred to Basingstoke, one of two specialist hospitals in the country that deals with peritoneal malignancy.  There I had what is called a cytoreduction – the removal of several bits inside the peritoneum including ovaries, womb and greater omentum, a resection of some of the small bowel and the removal of the abdomen wall on the RH side.  This was replaced with a mesh.   I feel like Bionic Woman!  The operation lasted 13 hours.

Although I was flushed out with hot chemotherapy and told that all visible cancer cells were removed, a tumour again returned in November 2016.  I was eventually operated on in March 2017.  My bowel had totally seized up and I didn’t eat for 10 days.  I was given palliative advice and planned my funeral.  The family gathered at my bedside and we said our farewells. At the last moment and when I was preparing myself for my demise, I was again accepted into Basingstoke as an emergency patient.  They performed an absolute miracle, wading through all of the scar tissue, removing the tumour (which had not only pressed on and stopped the bowel from working, it had wrapped itself round the femoral artery – I could have lost my right leg) and they saved my life.  The fact that I am left with a permanent stoma is merely a small inconvenience.

To say I am grateful to the NHS is an understatement! I owe my life several times over to both Brighton and Basingstoke hospitals and have nothing but praise for the clinical and nursing staff for all of their help, support and expertise.

But, I have learned several lessons since that first pain in my abdomen:

  • As soon as you feel any discomfort in the abdomen, ask for a referral to a consultant and for a CT scan. I hoped it would go away and as I felt ok I wasn’t too worried.  I left it for at least 18 months.  I should have insisted on a referral.
  • Brighton hospital (level 9) is amazing, but they don’t do cancer operations outside the bowel. There are too many essential organs and arteries in the peritoneum.  They knew that my cancer was on the appendix, but only referred me to Basingstoke for operations 3 and 4.  This might have been for financial reasons.  I don’t know.
  • Urge your oncologist to revise your chemotherapy prescription if you are unhappy with it. Mine was the highest dose as I am very tall.  This seems so arbitrary and my dose was almost halved at a stroke.  This was after 3 months.  Again, I wasn’t one to complain!  Even the half dose wiped me out.  As a result the MDT have agreed not to put me on chemotherapy following my last 3 operations. 
  • Always go to an oncologist’s and consultant’s meeting armed with questions and take someone with you as it is so easy to forget what is said. Ensure that they explain blood test results and CT or other scan results in simple, non-medical terms.
  • C-Side has given me so much confidence, information and friendship. I wish I knew then what I now know when I started off on my cancer journey.  I have learned the best way to find out what I need to know; what is worth worrying about and what value a shared experience with other cancer patients can do for my confidence and outlook on life.

    Denise
    Seaford
    8th September 2017