Hello and welcome to our Monthly Newsletter! 

Thank you for joining us! We have lots of exciting things coming up over the next few months, so please keep reading! 

We will soon be making changes to our NCUK Campaigns, and we have already begun to plan for Neuroendocrine Cancer Day on the 10th November 2022.

We will be sharing information on:

And we have a few surveys in motion that we would really appreciate your participation in. We've also introduced a new Family and Friends Natter Support Group and are slowly working our way back to some face-to-face groups.

 All of this, alongside some brave Community Spotlights and amazing fundraisers, there's so much to discover! So, pop the kettle on, get comfortable and dive in.

Thanks for reading, see you soon!

NCUK Team

We want to support you – tell us what you want!          

We have created some patient & “Family & Friends” surveys which will be going out on the 10th September.  We want to use these surveys to understand how we can better support people with Neuroendocrine Cancer and their loved ones to live as normal a life as possible. We would really appreciate your support in completing them so we can ensure we are giving the right support.

There are three surveys: (2 for patients & 1 for Family & Friends).

1.       Neuroendocrine Cancer Patient Management Survey: (This will take approx. 20 minutes to complete)

Objectives of this survey:

• To understand and identify the key areas in which patients want support and what kind of support they require.
• To understand about your experience with your healthcare teams and the degree to which you feel in control.  
• To understand how NCUK can support patients to feel more in control.
• To understand how NCUK can best support patients’ informational needs.  

2.       Psychological burden of Neuroendocrine Cancer Patient Survey: (This will take approx. 20 minutes to complete)

Objectives of this survey:

• To understand about the emotional impact of your diagnosis and any emotional support you received.
• To understand the key areas in which patients want emotional support.
• To understand how patients want to receive emotional support.

3.       Psychological burden of Neuroendocrine Cancer Friends & Family Survey: (This will take approx. 10 minutes to complete)

Objectives of this survey:

• To understand the key areas in which Family & Friends want emotional support.
• To understand how Family & Friends want to receive emotional support.

We would really appreciate your support with these surveys so please look out for them at the beginning of September!

Out of the blue

Patrick Coffey and his father, Paul Coffey

In 2016, my father was diagnosed with stage four stomach cancer just before he planned to retire from the work he loved. He was given a very short life expectancy but in a twist of fate, two weeks later, the diagnosis was revised to a rarer neuroendocrine cancer with a longer life expectancy; it was still stage four cancer, but we were more optimistic. He lived for another four and a half years and became part of the neuroendocrine cancer community.

In April 2021, as lockdown thawed and the afternoon sun streamed into his room, he died at home with his family by his side. He was 69 years old and had spent his life working as a GP in West Oxfordshire.

To honour his late father, Patrick and some friends decided to take on the English Channel as part of a four-person relay team, to range funds for NCUK. 

Nigel’s 100km London to Brighton Bike ride

   Nigel and his daughter, Olivia, and her partner Christian

We set off early (6:55 am) following one of the routes devised by Christian. Olivia felt we wanted one with lovely scenery and “undulations“, i.e. not flat.

With almost no traffic we made good time leaving London and soon got into our stride. Quite a lot of suburbia to start with but in no time, we were out into lovely open countryside. A gentle climb up to Farthing Down was rewarded by lovely views all round as well as the spectacle of two curious cows trying to break out over a cattle grid.

Our first stop at about 9 was for coffee at a very parched Bletchingley Golf Club where we mingled with smartly dressed golfers at an early Tee cabin. By this time the sun was up and it was already hot. But, as Olivia kept reminding me, the faster I pedalled the more breeze I created and the cooler I would be! 

NCUK's Leanne and Jackie take on individual challenges to raise vital funds for Neuroendocrine Cancer research

On the 24th September 2022, Jackie, along with some friends are taking on the Three peaks challenge, in just 24 hours!

"Some friends and I are climbing 3 mountains Ben Nevis, Scafell Pike and Snowdon in just 24 hours! Not many people have heard about Neuroendocrine Cancer, including myself, up until I started to work for them in May. It is now something very close to my heart, the stories I read of our patients and/or their family/friends all trying to do their bit to raise money at such a difficult time to anyone involved. I thought it’s only right for me to do something myself to help out."

You can support Jackie's challenge here

On the 20th October 2022, Leanne Talbot, along with her three friends (Aisling, Erin and Laura) will be landing on African soil ready to take on not only the highest peak in Africa but the highest free-standing mountain in the world – Mount Kilimanjaro!

"I am so excited and absolutely terrified about our Kilimanjaro challenge! I went on my first ever hike back in 2020, when I climbed Ben Nevis with no training – I mean what else was there to do during lockdown, other than walk!? Fast forward to 2022 and after a number of hikes around the UK, we’ve decided to up the game and set the challenge of a lifetime."

You can support Leanne's challenge here.

New Family and Friends Natter!

We know that a cancer diagnosis affects more than the person diagnosed.

Our National Friends and Family Neuroendocrine Cancer Natter Support Group provides a safe place to talk to others who also have someone they care about who has a Neuroendocrine Cancer. Support can mean anything, from being a good listener, helping with personal care, providing transport, going along to appointments or simply being there through the trials and tribulations of everyday life.

Feeling confused, angry, guilty, alone, afraid, and/or sad can be common experiences – not just for those diagnosed, but for you too. Any of these emotions are a perfectly natural human response to seeing someone you care about try to deal with the impact of their diagnosis, treatments, symptoms and side-effects. Talking with others who are also supporting a family member or friend can help you cope.

Our hope and aim is to make sure that EVERYONE living with Neuroendocrine Cancer has access to support – by phone, online or face-to-face – somewhere to turn to for information, advice and friendship.

We welcome you to join us – to meet others who have a friend or family member diagnosed with a Neuroendocrine Cancer – to share experiences, make friends and create a supportive network.

Our next 2022 National Family & Friends Natter Meeting will be held on the 7th September 2022

Nutrition & Neuroendocrine Cancer booklet by MENETs

Nutrition & Neuroendocrine Cancer is a booklet designed to provide in-depth definitions and recommendations for a range of Neuroendocrine Cancers.

It is an International Edition, produced by MENETs (Middle East Neuroendocrine Tumor Society), and written by Dietician, Tara  Whyand – for all those who live with and around Neuroendocrine Cancer, the patients and caregivers.

World Neuroendocrine Cancer Day 

10th November 2022

On the 31st October, in the run up to World Neuroendocrine Cancer Day, NCUK (Neuroendocrine Cancer UK) will launch this year’s UK awareness campaign utilising messages around ‘assumptions’ of Neuroendocrine Cancer and the potential damage these assumptions can cause.

 We invite you to share one experience of an assumption that has had a negative impact on you either as a patient, a family member, friend, or supporter. If you are a healthcare professional, we ask you to share one assumption you have made that you now know not to be correct.

CANCER PATIENT EXPERIENCE SURVEY RESULTS

NHS England have published the 2021 results of the Cancer Patient Experience Survey.

Patient experience of care is incredibly important and it’s a testament to the hard-working NHS staff that cancer patients have given the highest rating on record for overall experience at 8.92 out of 10. 

NHSE know some patients have experienced disruption to their care over the course of the pandemic and the survey has highlighted areas where improvements are needed. These valuable insights will now be explored further so that meaningful changes to services can be made and so that NHSE can continue to improve on and provide a high level of patient care.

LAMB JAM CHARITY MUSIC FESTIVAL RAISES OVER £4000 FOR NCUK

On Saturday 25th June 2022, the Forage Farm Shop and Kitchen (located in the Cowbridge area), hosted a debut festival in collaboration with charity music event Lamb Jam. The one-day event featured five local cover bands playing a variety of music from across the ages, as well as an array of food, fun and prizes.

Lamb Jam was held on the “lawn” at Forage Farm Shop & Kitchen to raise awareness and money for both Neuroendocrine Cancer UK and Kidney Wales.

Live local bands, Juice, Saltwater Cure, Cherry Hive and The Story Goes all played, and The Forage Farm Shop and Kitchen served their ever-popular hog roast using produce from their farm; food choices included lamb roast, burgers, and sweet treats in the shape of Fablas Ice Cream who attended the event.

NEW SHOP STOCK!

We've been extremely excited in the office just lately, trying to get our hands on some of our newest stock!

Tote bags, stress balls, trolley coins, and some lovely wedding favors. As well as a sale on our beloved moth badges! 

In our shop you will also find this beautifully penned book, written by a dear late patient and GP, Paul Coffey.