Yesterday I was interviewed by a lovely BBC Radio Cornwall reporter; Christine Stewart, about the charity walk in memory of Marty and in aid of Bowel Cancer UK. It couldn't have been a sunnier day for it and the Gannel was filled with dogs having fun in the water, kids crabbing on the bridge and people enjoying the beautiful scenery. The interview will be aired on BBC Cornwall Radio throughout Sunday 3 September and via their social media channels.
If you would like to join me on the walk, you can register via the Memories of Marty Just Giving web page or you are welcome to just turn up on the day at the cafe car park which is above the main National Trust Crantock beach parking.
I'd like to thank the lovely gentleman who is allowing us to use their cafe car park for the walk - it's really appreciated.
Registration will take place from 10.30am and we'll set off from 11am. You'll be provided with a map & directions and the route will be revealed on the day. It's 3 weeks today! Official poster is below:
Today Marty would have been 37 years young and there's not been a day that's passed when I haven't thought about him. Every now and then, I believe Marty gives me little signs when I need them the most. Yesterday I was late leaving work and on my way home, one of his favourite songs came on the radio - the JCB song, which is a rarity. Whenever I hear it, I can still see him and the smile it would bring to his face when it played and the funny singing voice he'd put on, and 'the looks' we'd give each other. I'll never forget why he loved it and how it reminded him of the time spent working with his dad; where I know it also gave him fond memories of his mum cooking bacon sarnies for them at the weekends or preparing their crib boxes for work. It even mentions transformers and all the childish things we both loved together. Little signs always appear when I need them the most and there's been many since he passed away. Whether these signs are coincidence or not, I'll always take comfort in believing it's him telling me to keep going, do what I'm doing and to never give up. He'll always be apart of me and I'll always remember and cherish the life we had together. I will always put sunflowers at his grave for as long as I live on his birthday (and yes, they have googly eyes on them), because of the memories we made when I would grow them from seed among other things in Summercourt. Maybe one day, a giant carrot might just sprout too - a memory for another time.
Walk Together is the Bowel Cancer UK charity's new five mile sponsored walk to bring people together so that they can show their support for those undergoing treatment, remember loved ones and help stop bowel cancer.
Walk Together events are taking place in London, Edinburgh and Belfast, which are all a bit too far for us Cornish folk to travel, so I thought I would plan my own one here in Newquay, with a little help from the charity along the way.
Walk Together UK details
Date: Saturday 23 September
Registration: from 10.30am
Price: £10 per adult, £3 per child (under 5's go free) or whatever you can afford to donate if walking as a family.
The walk I am planning in Cornwall is not only in memory of Marty but also to show my support to those that are undergoing treatment and to raise awareness of the symptoms - especially in younger people, whist raising money for the Bowel Cancer UK charity.
I have planned the walk along some of Martyn's favourite places in Newquay (route to be revealed on the day) and depending on whether you stop off at the pit stops I will be organising, the walk will take approximately 2 hours and will be dog friendly.
The charity do recommend you do some training over the summer so you find the walk enjoyable. View the training schedule to get yourself fit and prepared for the walk.
Those that join me on the day of the walk will be given a card to pin to your t-shirt so you can write a lovely message about why you are walking and if you are walking for anyone in particular. We would love to read them on the walk and I will be taking photos to share with the charity on the day.
To register for a place on the walk or to support the cause visit:
Anyone taking part in the walk in Cornwall that would like to get sponsorship are more than welcome to. My sponsorship will be donated towards helping on-call firefighter Jason Bragg (aged 26) and his family. You can find out more about this cause here: www.justgiving.com/crowdfunding/jason-bragg
If you would like to find out more about the other Bowel Cancer UK walks, visit the Walk Together web page for details.
This year the charity focused on bowel cancer screening.
Bowel cancer screening saves lives but at the moment in some areas of the UK only a third of those who receive a test in the post complete it. Thousands of people are missing out on the best way to detect bowel cancer early when it is easier to treat and there is the greatest chance of survival.
How you can raise awareness of bowel cancer screening:
Today I was interviewed by BBC Spotlight reporter Jenny Walrond, to talk to her about Martyn and his fight with bowel cancer and my thoughts about how a new assessment tool will help GP's make a quicker diagnosis for younger people suffering with bowel cancer.
The University of Exeter; in partnership with the Bowel Cancer UK Never Too Young campaign, Durham University and North Tees and Hartlepool NHS Foundation Trust, have published new research and a risk assessment tool to support GPs to identify the symptoms of a serious bowel condition for patients aged under-50.
The assessment tool will calculate the risk of the patient’s bowel symptoms allowing the GP to decide whether they need further tests. This is the first of its kind for younger people and aims to speed up the diagnosis of patients under 50 who often experience significant delays.
You can read more on this story from the Bowel Cancer UK's website on real life stories.
I recently wrote to my local MP about improving services for people with Lynch syndrome because my father was diagnosed with Bowel cancer in 2011 and was never tested for lynch syndrome. My life has been changed forever because of this terrible disease and I want to do all I can to help prevent this from happening to others.
You may have seen, the National Institute for Health and Care Excellence (NICE) published guidelines recommending everyone diagnosed with bowel cancer is tested for Lynch syndrome - a serious genetic condition that increases the risk of bowel cancer by as much as 80%, as well as increasing the risk of many other cancers. As it’s an inherited condition, there’s a 50:50 chance of passing it onto your children, so
sadly whole families can be devastated by cancer.
As your constituent I am concerned that of the estimated 175,000 people that have Lynch syndrome in the UK, 95% don’t know that they have it. This is because people aren’t being systematically tested. It's crucial that people are identified so they and their families can take steps to reduce their risk of getting cancer, like surgery or regular colonoscopy.
That’s why it’s so important that all hospitals follow the guidance and test everyone diagnosed with bowel cancer. But I know from research published by Bowel Cancer UK that some hospitals aren’t testing for Lynch syndrome or providing patients with timely care once they are identified because they don’t have the resources or the capacity in place. This simply isn’t good enough and that’s why I'm supporting Bowel Cancer UK’s campaign to improve the diagnosis and care of people with Lynch syndrome.
As my MP, please can you join me in supporting the campaign by:
1. Contacting our local Clinical Commissioning Group and hospital to ask if they will be committing the resources necessary to implement NICE guidelines.
2. Helping to raise awareness of the issue by supporting Bowel Cancer UK’s campaign on social media. Sample tweet: I’m supporting @Bowel_Cancer_UK’s campaign to stop Lynch syndrome devastating families with cancer.
Please support https://shar.es/19dDC6
If you would like to take further steps to support the campaign, please enquire at firstname.lastname@example.org
I am personally supporting Bowel Cancer UK because my father was diagnosed with Bowel cancer and was never tested for lynch syndrome and have experienced the devastation this cancer causes, when my husband lost his battle with bowel cancer at the age of 34. Doctors failed to recognise that young people can get this cancer at an early age, which resulted in his diagnosis being too late.
My life has been changed forever and I want to do all I can to help prevent this from happening to others.
I look forward to hearing from you.
Please find below a positive response that I received from Steve Double.
Thank you for your email in regarding Lynch syndrome and bowel cancer.
I appreciate your concerns, as I know bowel cancer is one of the most common types of cancer diagnosed in the UK, in fact my father has had and survived bowel cancer twice. Over eight in ten cases of bowel cancer occur in the over 60s and I agree that early diagnosis is key in improving outcomes, especially with people who have Lynch syndrome.
Under the NHS Bowel Cancer Screening programme in England, people aged 60-74 years old are sent a home testing kit every two years. Those aged above the eligible age limit are also able to self-refer for screening. As part of the programme, a new test is being introduced which is easier to complete and it is hoped that 200,000 more people per year will take up the opportunity to be screened. An additional one off bowel scope screening test is also being introduced for those aged 55.
All hospital trusts are able to offer screening for patients if clinically appropriate. New guidelines by the National Institute for Health and Clinical Excellence, published in June 2015, states that GPs should offer screening for those who are aged 60 and over presenting with relevant symptoms.
Cancer survival rates in the UK have never been higher, however, I am aware that there is still more to be done. The Government is working with the NHS, charities and patient groups to deliver the new cancer strategy developed by the independent Cancer Taskforce. By 2020, everyone urgently referred with a suspicion of cancer will receive either a definitive diagnosis or the all clear within four weeks.
The £1.2 billion Cancer Drugs Fund has helped over 95,000 people and I will continue to support the Government’s commitment to increase NHS spending in England by £10 billion in real terms by 2020/21. I fully support those who have Lynch syndrome in their families get tested as per NICE guidelines and if you are having problems with the KCCG in funding this I am happy to take up your case.
Once again thank you for contacting me about this important issue.
Steve Double MP
Member of Parliament for St Austell and Newquay
0207 219 4408
Help STOP bowel cancer devastating families with Lynch syndrome.
Act now to STOP genetic condition devastating families with cancer by signing the petition.
Bowel Cancer UK worked with nine other charities to unite everyone in a simple but powerful life changing act – wearing a Unity Band®. By joining forces a bigger impact is made in transforming the lives of millions who are affected by cancer.
The Unity Band is made of two parts, knotted together, to represent strength in unity and the power of what can be achieved when people join forces.
Thanks to all those who brought one of the bowel Cancer UK Unity Bands this year and also joined in with the cake bake at my work. Proceeds raised from both the band sale and the cakes raised £210 for the charity.
(World Cancer Day took place on 4 February 2017)
Find out how you can support Bowel Cancer UK's 'Never too young campaign.
Never Too Young is leading change for younger bowel cancer patients. The campaign is giving younger patients a voice and changing clinical practice and policy to stop bowel cancer in people under 50.
Every year 2,400 younger people are diagnosed with bowel cancer in the UK. While this is only five per cent of those diagnosed, this number is slowly increasing. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
Since they launched the Never Too Young campaign in 2013, they have made much progress, including to change GP referral guidelines to include younger people for the first time.
Please support the Bowel Cancer UK charity in any way that you can. You can find out more about them from their website or Facebook page.
One charity - Bowel Cancer UK is leading change for younger bowel cancer patients with the 'Never too Young' campaign which is giving younger patients a voice and changing clinical practice and policy to stop bowel cancer in people under 50. Every year 2,400 younger people are diagnosed with bowel cancer in the UK. While this is only five per cent of those diagnosed, this number is slowly increasing. Their research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
Find out more about their "Never too young" campaign.
Blog - Never too Young
This blog is to carry on Marty's fighting spirit and help raise awareness of bowel cancer to others. It is also a place for you to share any of the things you have done or are doing in memory of him.