As a small charity with limited resources communications and PR can be a challenge, but it is important.  We completely understand the power of an effective communication and PR strategy in helping us reach our community with key health messages particularly around cancer and fibroids, our two main focus areas at the moment. With this in mind when we heard about Find a Cure’s workshop on ‘Communications and PR for Small Patient Groups’ we jumped at the opportunity to attend.

This workshop was held today and didn’t disappoint. It was an excellent workshop with very useful presentations from experts in the field of communication. In the first presentation, delivered by Sorsha Roberts, Online Communications Officer at the AKU Society, we learnt of the importance of social media for patient groups. Sorsha highlighted the statistics around the use of social media stating that a significant number of people were using social media to find health information and that 90% of people who found health information on social media trusted it and would use it. Furthermore Facebook is the fourth trusted source of health information and this is because information is delivered in a way that is less clinical, it’s clear, easy to understand and it’s delivered in a friendly and informal environment.

We then moved on to our next speaker Stefania Rucci from  Say Communications who spoke about ‘Working with the media’. This was a very informative presentation where Stefania started with an overview of some of the challenges small charities face in getting noticed in the media. These challenges included: competition with other health messages, the media having its own agenda which may not align with a charity’s agenda and small charities have fewer resources making it hard to break through in the media.  Despite these challenges it is possible to mount a successful media campaign but it needs some planning and the adoption of some key principles. These include: developing a compelling a story; getting to know your media and aligning your agenda with theirs;  targeting media to ensure high impact and high relevance; positioning your organisation as the expert; and always being ready . Additionally Stefania said it was important to produce great content, understand your audience, understand the different types of media (specialist,  national papers, local papers, magazines, TV, radio, bloggers and social media) and tailor your content to fit different types of media, i.e. be able to tell your story in a different way so it appeals to different audiences.

We were recently asked about breast implants and mammograms and in today’s blog we thought we’d address this.

A mammogram is an X-ray that is used during the breast screening process to detect breast cancer at a very early stage and hence aims to give women with breast cancer the best chance of survival.  During a mammogram X-rays are passed through the breast in order to generate images (radiographs) of each breast. If a tumour, cyst or calcium deposits are present this will be detected as bright spots on the radiographs.

When a woman has a breast implant (breast augmentation/ enlargement), the implant is inserted between her breast tissue and chest muscle or behind her chest muscle.  The implant may make a mammogram less effective at detecting breast cancer as it prevents the X-rays from penetrating the tissue properly and hence distorts the image. This can be overcome by a slight modification in the way in which the mammogram is performed which will allow as much of the breast tissue as possible to be visualised by the x-ray.

If you are due for a mammogram and you have an implant please definitely attend your appointment but  let the breast screening clinic know  beforehand that you have an implant so they are prepared and can screen you appropriately.

If you have a breast implant because you have had a total mastectomy (i.e. both breasts removed) you won’t need a mammogram as all your breast tissue has been removed but following your breast cancer diagnosis and after treatment you will be monitored regularly. If you have had a mastectomy on just one side then you’ll need to have a mammogram of the breast that remains.

We hope this answers any questions you may have on this topic and if you have any more questions please do let us know by leaving a comment below.

A study published this week in JAMA has shown that vigorous physical activity is better for our health and enables us to outlive those that just take part in gentle or moderate exercise.

This was a large study including 204,542 people who were followed for just over six years. Researchers compared participants who took part in moderate exercise such as gentle swimming, housework and social tennis to participants who engaged in some vigorous activity such as jogging or aerobics. They found that the risk of premature death was 9 to 13 percent lower in those taking part in vigorous exercise.

As a result of their findings researchers concluded that “vigorous activities should be endorsed in clinical and public health activity guidelines to maximize the population benefits of physical activity.”

This study is useful as it helps us understand the type of exercise that we need to take part in to reap the maximum benefit. We encourage everyone to introduce some vigorous activity into their exercise plan.

Prostate Cancer UK ‘s  new film, released this week, very effectively raises awareness of the fact that black men are at a higher risk of developing prostate cancer than other ethnic groups. You can watch this film below and let us know what you think by leaving a comment below.

In this week’s blog we speak to the very inspirational Adele Sewell.  Adele was diagnosed with breast cancer in 1999 and in 2007 was faced with cancer again when she was diagonsed with ovarian cancer.

Adele tells us about her experience with both breast and ovarian cancer, what she has learnt from her experience and why she thinks the black community is hesitant to talk about cancer.

How was your breast cancer discovered?

My breast cancer diagnosis was quite straightforward. I found a lump in my breast, I went to my GP and was referred for a biopsy, a mammogram and an ultrasound. The mammogram and biopsy were both inconclusive but the ultrasound confirmed it was cancer. I was 35 years old at the time, fit and healthy with no apparent risk factors for breast cancer. I had surgery (a lumpectomy which just removed the cancer plus a margin around it to prevent spread or recurrence). A few lymph nodes were removed from under my arm and as no cancer was found in these I did not have to have chemotherapy, just radiotherapy. Radiotherapy was 3 times a week for 6 weeks. I have been lucky and 16 years later this cancer has not returned. Touch wood and fingers crossed!

How was your ovarian cancer discovered?

The ovarian cancer diagnosis was quite a different story and a rather long road from first symptoms to final diagnosis. It took about 18 months and several visits to my GP before I was finally diagnosed. As a result the cancer was a late stage diagnosis. The symptoms I had started in early 2006 and I was not diagnosed until Sep 2007. The symptoms included urinary frequency, vaginal discharge, sciatica, lower abdominal pain, bloating, constipation. Also other random symptoms such as hiccups and a pain when I pressed my belly button, loss of inches around my hips but gained inches around my belly. This is because while the cancer was causing me to effectively lose weight, accumulation of fluid in the stomach, called ascites was stretching my abdomen.

Do your doctors know why you developed both breast and ovarian cancer?

When the diagnosis of ovarian cancer came the doctors said that people don’t usually get two completely separate primary cancers unless there is genetic involvement. I spoke to a genetic counsellor and agreed to have the blood test which came back showing that I had a mutation in the BRCA2 gene which is supposed to repair damaged DNA and so prevent cancer. It turned out that I had inherited this from my father. BRCA mutations in men can cause male breast and prostate cancer and my Dad died of prostate cancer, as did his eldest brother. My Dad’s cousin died of ovarian cancer in February this year and two of her sisters have had breast cancer, as have my sisters. Two of my Dad’s aunts are also thought to have died of cancer.

What has been the most challenging aspect of your journey with cancer?

Being told that my life expectancy was less than 5 years. Being told immediately after completing treatment that there was a 70 to 90% chance that the ovarian cancer would come back…which it did in 2010 and required further surgery and chemotherapy.

What life-lessons have your learnt from your experience?

Learning that each person is an individual and therefore that statistics and prognosis information will differ from person to person. Learning that it is ok to be vulnerable and to admit that you have fears. Learning that there are a lot of kind and generous people in the world.

What advice would you give to anyone who has recently been diagnosed with breast or ovarian cancer?

Don’t go on the Internet at 2am and search for ‘prognosis stage 3C ovarian cancer. Ask your consultant to tell you about people who have survived despite the odds.

We’ve noticed that the black community are hesitant to talk about cancer, why do think that is and how has talking about your experience helped you?

I have never met another black woman with ovarian cancer and I am sure that I am not the only one. I am not sure why black people are hesitant to talk about cancer. It is as though they are ashamed or embarrassed about it. I don’t know why that would be. I have found it really beneficial to talk to other women who have had breast and ovarian cancer. It is amazing to find that people who come from different walks of life, different ages and experiences find a common thread when they get together and share their experiences. It is very supportive to find others who feel the same way that you do.

Is there anything else you’d like to say to our readers?

I think the Lake Foundation Is a wonderful initiative which will be of great benefit to many. I am happy to still be alive, despite 3 cancer diagnoses, seven years after diagnosis with ovarian cancer and 16 years after diagnosis with breast cancer.

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We’d like to say a big thank you to Adele for speaking to us about her experience. If you have any questions or comments please leave them in the comments sections below and if you’ve been affected by cancer and need someone to talk to, come along to our cancer support group. For more information click here.

Macmillan Cancer Support has commissioned TNS BMRB, an independent research company, to explore the barriers and motivations for physical activity for those living with and beyond cancer. This research will help inform the development of interventions to help those living with and beyond cancer engage with the benefits of physical activity. TNS BMRB is an independent research agency which conducts work for a range of government departments and charities.

In April, TNS BMRB will be conducting one hour face-to-face home interviews with people living with and beyond cancer. This can be at a date and time most convenient for the individual.  TNS BMRB will be conducting additional research online later in May, which will be conducted through a smartphone app and online. This may be more appropriate for those who do not wish to have a face to face interview, or prefer to participate remotely.

In the interview participants will be asked about their attitudes towards physical activity, after treatment and at other times.  Participation in interviews is flexible – we can pause or stop the interview at any time for any reason. Taking part in this research is  completely confidential and anonymous, and the information provided will be used for research purposes only. We offer all participants a £40 gift as a thank you for their time.

We wish to include a broad spectrum of people living with and beyond cancer as part of the research – so we are interested in speaking to everyone. However, we are also aiming to reach some particular groups:

• People aged 14-20
• Aged 75 and over
• People currently receiving treatment
• People post-treatment, who have a non-curable cancer, or an advanced cancer and are in palliative care
• Those who do not have very active lifestyles

If you are interested in taking part or would like more information please contact Rebecca Paton (Rebecca.paton@tns-bmrb.co.uk, +44 7831 702513)

Jo’s Cervical Cancer Trust is looking for women from Black and Minority Ethnic (BME) communities to help them make a new film which aims to reduce health inequalities by raising awareness of cervical cancer and how to prevent it through attending cervical screening (smear tests).

If you are from a BME community, aged 25 to 64  and are  are happy to be filmed on the 14th April near Kings Cross in London , then you can get involved.  You’ll be needed between 12.00 and 4.30 pm and Jo’s Cervical Cancer Trust can cover all reasonable travel costs.

They are  looking for a mixture of women, some of whom have been for their smear test and others who have been invited but not attended. If you have been through cervical screening they will ask you to talk about your experience.

The film will be shown to 
– Women eligible for screening in the UK (grandmothers, mothers, daughters) focusing on BME women
– Health Professionals: Primary & Secondary health care professionals
– Employers & Unions
– Anyone that likes to gain information via a video

It will be used on the:
– JCCT’s website to compliment online written content
–  Within  presentations and public facing events to raise awareness of cervical screening
– Social media: facebook, twitter etc.

If you would like to help raise awareness amongst women from all communities and help JCCT prevent cervical cancer please contact:
Claire Cohen, Information and Education Manager, Jo’s Cervical Cancer Trust
T: 020 7250 8311
E: claire@jostrust.org.uk

On Saturday, we were absolutely delighted to attend the MGC GCC Together We Rise awards ceremony which recognised the contribution of black women in Britain who are taking a leading role in enriching and progressing the black community. Our very own Abi Begho received an award for her contribution to the health and wellbeing field and after receiving her award, Abi said:

“I am so happy, honoured and grateful to have received this award and I would like to say a big thank you to the MGC and GCC for recognising the work I’ve been doing with The Lake Foundation. I would also like to say congratulations to all the inspiring award recipients. It’s so important to have an event like this that recognises the important contribution that black women are making in their community.”

This was an excellent, inspiring event which featured women from a variety of fields who spoke about their journey to success, what they learnt from it, the challenges they encountered and how they overcame them.

We applaud the MGC GCC for organising this event and highlighting the great work of black women in the UK.

Full list of awards:

Health
Abi Begho, The Lake Foundation
Rameri Moukam, PattiGift Therapy 

Education
Melanie Hibbert, Primary Learning Centre
Julietta Joseph, Afrika Bantu Saturday School
Afreya Adofo, Afrika Bantu Saturday School
Lorna King, New Mind School

Business
Sophia Bailey, Wealth Creation Mentor
Shirley Best, Rolanda Boutique

Music
OneNess Sankara, Spoken Word Artist
Janet Kay, the Queen of Lover’s Rock
Nyarai Kizzy, Singer and Song Writer

Arts and Culture
Patricia Foster, Creative Education Consultant and Poet

Natural Hair
DebRose Searchwell – Natural November

Media
Linda Graham, Isis Magazine

Activism
Kai Ouagadou-Mbandaka, Alkebu-Lan Revivalist Movement
Sister Lamisi
Sacha Brown, The Empress Movement

Lifetime Achievement Award
Alderwoman Cllr Gee Bernard

We are delighted to introduce you to our Founder, Abi Begho.  In the video below Abi tells us a bit about herself, our work and what inspired her to start The Lake Foundation.

Adopting a healthy lifestyle is hard and one of the biggest hurdles many of us face when attempting to turn to a healthy diet is…sugar (cane sugar). We love sugar, we put it in and on almost everything and of course there is hidden sugar, the sugar that has been unnecessarily added to many processed foods.

After years of being conditioned to depend on sugar many of us are addicted and this sugar addiction has created a number of health challenges with our love of sugar being linked to type two diabetes, cardiovascular disease (heart disease and stroke) and obesity.

Reducing our sugar consumption is tough and many of us have tried various strategies. These have included switching from white sugar to brown sugar because we mistakenly think it is healthier but white sugar and brown sugar are very similar, i.e. they provide no nutritional benefit, consist of sucrose and fructose and provide us with quick energy. White sugar is slightly more processed because it is bleached to achieve its colour and brown sugar contains molassess but the bottom line is that high consumption of both brown and white sugar is bad for our health and should be avoided.

Other strategies many employ to reduce their sugar intake include switching to other sweeteners like honey and synthetic sweeteners but again these are not ideal.  Honey is better than cane sugar in that it contains small amounts of vitamin C, vitamin B, calcium and iron (I stress SMALL amounts), it has a lower glycaemic (50 versus 64-68 for brown/white sugar) and so it doesn’t raise our blood glucose levels as fast as cane sugar and research has suggested it is good for our immune system . But, honey is 70-80% sugar and contains more calories than cane sugar so it has to be consumed in moderation. The advice from many nutritionists is that if you don’t have any underlying health issues (diabetes or any issues with your metabolism) then having honey occasionally is ok.

Synthetic sweeteners are also used by many as they have no calories and don’t adversely affect blood glucose levels. Whilst most synthetic sweeteners have been deemed safe by food regulators there are mixed feelings about these products. Early studies linked some sweeteners to cancer and other health conditions but these studies have been refuted with organisations like the National Cancer Institute and the Cancer Research UK stating that they pose no danger to our health. With this in mind use of these products is down to personal preference and how confident an individual feels about the long-term effects of synthetic sweeteners. It is a good option from the point of view of blood sugar levels and calories but if you’d  prefer to stay away from highly processed products then this is not a good option.

There are some newish natural alternatives such as agave nectar and stevia. Agave nectar  has a much lower glycaemic  index (GI is 15) than both white and brown sugar (GI ranges from 65-68) as well as honey (GI is 50), but there are concerns over its high fructose levels which can lead to insulin resistance, diabetes, obesity and metabolic syndrome. Therefore there are questions over whether the benefits of its low glycaemic index are cancelled out by its high fructose content (70-90%) so it’s probably best to avoid agave nectar altogether because as Dr Johnny Bowden has said “Agave syrup is basically high-fructose corn syrup masquerading as health food”

Stevia-based sweeteners are made from the stevia plant and contain no calories. Their sweetness comes from the presence of glycosides which are not stored in our body and are rapidly excreted.  Stevia-based sweeteners have a glycaemic index of zero and hence have no negative effectives on our blood sugar or insulin nor does it contribute to obesity and cardiovascular disease with researchers  writing in The Open Obesity Journal  that “Stevia leaf extract and their constituent phytonutrients promote caloric balance and can be beneficial components of a  healthy dietary lifestyle”

The main components of stevia-based sweeteners are stevia glycosides and safety tests have shown that they pose no harm to our health. There have been concerns over the long-term effects of whole-leaf and crude extracts of stevia, the misrepresentation of stevia-like products which are not stevia but highly refined stevia preparations and the additives that are included in some stevia products.  The recommendation is: if you are going to try stevia  do your research and opt for a high quality product.  A high quality stevia-based product appears to be one of the healthiest alternatives to sugar.

Finally, we’d like to talk about coconut palm sugar which we were recently introduced to at a health and wellbeing day by Mother Nature. Coconut palm sugar is made from the sap of the coconut. It is healthier than cane sugar due to its significantly lower glycaemic index (GI is 35 versus 64-68 for white/brown sugar). It also contains small amounts of fibre, zinc, iron, potassium, calcium, magnesium, vitamin C, short chain fatty acids, phytonutrients and antioxidants, but it does contain fairly high levels of fructose (35-45%). As mentioned previously high levels of fructose have been linked to diabetes, insulin resistance, obesity and metabolic syndrome. The levels of fructose in coconut palm sugar are lower than white sugar (50%) and agave nectar (70-90%) so in this respect it is also better than white sugar and agave nectar. If you need a sweetener and you’d like to have it from a source that is unprocessed then this is a better and  healthier alternative than white cane sugar, but should be consumed moderately due to its fructose content.

The take home message is we should really be avoiding sugar no matter what form it comes in due to its negative effect on our health. If we do need to sweeten the food we eat then a healthy option is using high quality stevia. Alternatively, if you have no underlying blood sugar problem you could occasionally opt for a good quality honey or coconut palm sugar.