
National Walking Day is celebrated every year on the first Wednesday in the month of April across the world. It means that National Walking Day is …
National Walking Day 2024

National Walking Day is celebrated every year on the first Wednesday in the month of April across the world. It means that National Walking Day is …
National Walking Day 2024
As the daffodils sway in the wind, dancing together with their beautiful bright heads on strong green stems bring together your thoughts of women’s health and for this month of March is Ovarian Cancer Awareness Month. Ovarian Cancer is the sixth most common cancer in women. In the UK there are approximately 21 new cases of ovarian cancer diagnosed every day. Despite survival rates increasing only 35.3% women diagnosed with ovarian cancer survive their disease for ten years or more. Further research and early diagnosis would help improve this survival rate. Early Diagnosis helps with survival rates, many women unfortunately do not know the symptoms, help them help themselves let them know March is Ovarian Cancer Awareness Month.

Photo by makefuneoflife.net
Most Common:
Persistent Bloating
Feeling Full
Needing to wee often
Stomach Pain
Other Symptoms:
Unintentional weight loss
Tiredness
Post-menopausal vaginal bleeding
Back pain
Indigegstion
Changes in bowel habit
Pain during sex
Please seek medical advice if you have any of these symptoms or are worried. Speak to your GP. Early diagnosis of ovarian cancer is a game changer. When a person is diagnosed with stage 1, they generally have a 90% chance of surviving five years or more. However if they ignore the symptoms and the cancer is diagnosed at an advanced stage the survival rate is reduced to a staggering 4%. Quite often cancers have spread due to being overlooked or misdiagnosed, when they have metastasised, the cancer becomes more difficult to treat and treatment options become more limited, thus survival rates drastically lower. Hence early diagnosis is important giving the opportunity of providing the best possible care and improving cancer outcomes.
If you are going to read and share one thing this month, please let it be this. Let others know this Mother’s Day Month of March it is Ovarian Cancer Awareness Month.
If you would like to read further you can read at:
With 10 million people dying every year cancer is the second leading cause of death worldwide. Female breast, lung, prostate and colorectal are the most common cancers globally. According to The World Health Organisation in 2022 there were over 22 million new cancer cases worldwide with 9.7 million deaths. 70% of these deaths happen in low to middle income countries. World Cancer Day is 4th February, the theme for 2024 is close the care gap. The first World Cancer Day was in 2000 and has been led by The Union for International Cancer Control (UICC) every year since. The UICC believe that access to life-saving cancer diagnosis treatment and care should be equitable for all; regardless of where a person lives, how much they earn, whatever their ethnicity or gender.

One third of deaths related to cancer can be prevented through people attending Cancer routine screening programs such as breast screening, cervical, and bowl, and finding cancer early and treating it quickly and effectively.
In 170 different countries there were over 25,000 press articles
Over 850 events took place in 102 countries
There were over 430,000 Social Media Posts
Over 60 Governments actively took part
February 4th is a day like any other, however this Sunday in 2024 it is World Cancer Day an international day raising awareness of cancer and encouraging prevention, detection and treatment. Happy World Cancer Day.
I first recall chatting about Huntington’s Disease ((HD) when I was approaching my teenage years. Josie diagnosed with it was a beautiful lady inside and out. I was privileged to spend time with her, she was brutally honest and told me she loved my honesty in asking questions and not hiding fears, anxieties or any questions I had. She explained as the disease progressed her speech would deteriorate and most likely no-one would understand her talking despite the fact she would be able to hear and understand everything. The one eventuality she dreaded was being a prisoner in her own body. She laid her hand on mine, my heart beating so fast and loud, I could feel it thumping so hard and echoing in my ears. She asked “you will still talk to me”. I took her hand with my other and said, “of course I will”. That day by listening I learnt a lot physically and emotionally about this disease, that it is Rare, Genetic and Terminal: Huntington’s Disease.

So what is Huntington’s Disease? It is a devastating rare hereditary disorder of the brain. The chances of getting diagnosed is 50% if you have a parent with the disease. It affects the nervous system of the body; the network of tissues in the brain and the spinal cord that coordinates your body’s activities. Everyone with Huntington’s through time will deteriorate physically, cognitively and emotionally. Till eventually they are fully dependent on the help of others, whether it is family, carers or nursing staff; or a mixture of all. Symptoms usually rear their ugly head between the age of 30 and 50 years of age, with symptoms getting worse over a period of 10 to 25 years until the person dies. Huntington’s affects between 1 and 10,000 and 1 in 20,000 people in the Uk. Unfortunately, as yet there is no cure and very little awareness.
Charities throughout the UK try their best to raise awareness, offer support those affected, etc. The Huntington’s Disease Alliance UK and Ireland ran a campaign in May 2023, HD awareness month. The campaign Family Matters. The Alliance consists of four independent charities throughout the UK and Ireland. The four charities all have the same goals and strive to help those affected by the disease, promote awareness and do their best to increase the understanding of UK wide of Huntington’s Disease. You can find a relevant organisation in your area:
@HDA_tweeting - England and Wales
@HDAAssocNI – Northern Ireland
Charities like these are important to get the message out there. Also to help those living with the illness, offer support, put you in the right direction in a time of need. The Scottish Huntington’s Association avidly campaigns for Huntington’s disease charities. Olympic medalist and double world champion rower, Sarah Winckless is patron. Huntington’s is in Sarah’s family on her Mum’s side. Sarah herself has tested positive for the gene.
Josie gave birth to four children before her HD diagnosis. As statistics go their family came out on the button. The first two children tested negative for the gene, child three and child four both tested positive. Despite receiving the news of having this cruel debilitating condition the siblings both had a glass half full attitude. That zest for life and wanting to live and enjoy each day as independently as they could for as long as they could. As time goes on life becomes a struggle; food becomes an enemy through the fear of choking, talking to strangers lessens from the embarrassment of not being understood. For many this can lead to isolation.
This disease changes the daily life of everyone that is affected with it. The person diagnosed is eventually trapped in their own body; forced to accept help from others, both physical and emotional. Even the fittest and most ambitious of us, as times goes by, our bodies get consumed by HD. Families and friends do their ultimate best to help care. However at times they feel the pressure and need reassurance; we need to remember they too are fighting their own battle. Living with Huntington’s Disease not only affects the person with the disease but those living around them. It can have a massive impact on those who live in the home. When symptoms start to worsen and physical symptoms begin to progress equipment invades the house. Yes it’s a fabulous help, but at the same time another tick of the box that the disease is progressing in the direction you were hoping would take a little longer.
Living with HD is not the same for everyone; for those affected severely with swallowing a tube feed is often fitted, some have involuntary movements, mood changes. Anxiety and depression are common with people affected with Huntington’s disease.
If you knew very little about HD I hope reading this short post has given you an insight and you have an idea of how this crippling disease not only takes over the body but haunts the minds of those affected.
I have rarely met a person with Huntington’s that has been a complainer in life. They have such a hard deck of cards to deal with in life and yet always seem to make the most of it.
So while you may have winged about being trapped in your four walls for a few weeks or even months due to Government restrictions during COVID, remember the people that are fighting a battle all the time.
At last there is heartening news published in JAMA Neurology on Monday 22 January 2024 regarding the early diagnosis of this incurable disease Alzheimer’s. The research was led by Nicholas Ashton, PhD, a professor of neurochemistry at The University of Gothenburg in Sweden. The study found that the blood test was up to 96% accurate in identifying elevated levels of beta-amyloid (another hallmark of Alzheimer’s) and up to 97% accurate in identifying tau.

“This project – which is thanks to £5m in funding from players of People’s Postcode Lottery – will gather the information needed to introduce a blood test for dementia into UK healthcare systems. This blood test would be a crucial step in speeding up how quickly and how early we are able to diagnose dementia”
Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer’s Society
The current protocol for diagnosing Alzheimer’s is a PET Scan and lumbar puncture to detect signs of progression of the disease. Whilst both procedures are not life threatening they can be slightly invasive, take time and come at a cost in man power, machinery and monetary terms to the NHS.
Since Ashton’s study showed that the protein phosphorylated tau (p-tau2) is clearly accurate this could mean there will soon be a key biomarker blood test for early Alzheimer’s diagnosis. Offering an affordable and hopefully easier way to diagnose the disease.
This physical illness damages a person’s brain. Through time the Alzheimer’s disease causes dementia. As the disease progresses the person affected will rely on more support until one day becoming Almost totally dependent on others.
“This is an excellent study and brings us very close to a blood test for Alzheimer’s disease that can be used in daily practice.”
Prof Bart De Strooper, Professor of Alzheimer’s Disease research at UCL
One thing we all have in common is the muscle sitting in the middle of the chest about the size of a fist that beats whilst pumping blood around our body. Delivering oxygen and nutrients to all parts of the body, helping other organs and muscles function well. It really is a marvellous muscular organ however unfortunately not everyone is born with healthy hearts; congenital heart disease (CHD) affects one in 125 births. Every 3 minutes a person dies in the UK either from a circulatory or a heart condition. Raising awareness and funding for lifesaving research will help improve and save lives. You can help, be bold, wear red on 2nd February 2024.

February is heart awareness month. Wearing red the first Friday in February will help others take notice. Wear red to work, school, clubs, etc. Have a red themed day/night – just some fun, bake some cakes, a quiz, etc. You can even look online and learn CPR for free on your phone or tablet.
Congenital heart disease
Heart attack and angina – coronary heart disease
Inherited heart conditions
Stroke
Vascular dementia
Diabetes
Obesity and generally being overweight
Smoking
High blood pressure
High cholesterol
Poorly managed diabetes
Alcohol – drinking too much
Everyday many people live with life threatening heart conditions through no fault of their own. Facing lifelong physical, emotional and practical challenges of living with congenital heart disease. Your body is precious, including the heart that beats around 100,000 times a day.
For some people on receiving their diagnosis of motor neurons disease (MND), they are already showing symptoms of a rare condition that will eventually end their life. With a chance of 1 in 300 in getting MND and affects around 5000 adults in the UK at any one time. This life limiting condition with progressive symptoms has no cure. Receiving a diagnosis of motor neurones disease – devastatingly incurable. Those words echo in the consultation room, life as once was for many so quickly changes. Many people with MND have complex needs, varying depending on the person. The condition reduces life expectancy with only 10% of people with MND living 10 years or more. After receiving a diagnosis life expectancy of MND is one to five years. Unfortunately, one third of people diagnosed with the condition only live for a year and more than half die within 2 years of being told they have motor neurones disease. Getting a diagnosis and living with motor neurones disease – devastatingly incurable.

MND is the name given to a group of illnesses which affect nerves called motor neurones in the brain and spinal cord. They help tell muscles what to do.
If a person has MND, their movement is affected.
Living with this debilitating condition weakens the muscles and eventually paralysis. Scientists, neurologists are doing everything in their power to develop clinical trials to research the disease. Hoping to make life easier for people with MND and the ultimate aim to find a cure.
In June 2023 the UK Government announced to continue funding for research for motor neurone disease, pledging £50 million to be used throughout the UK.
An international clinical trial led by professor Dame Pamela J Shaw has been shown to slow down progression of a type of motor neurone disease.
This could be a turning point for patient care
Scientists carrying out research at University College London have shown hundreds of proteins and molecules are found in the wrong place in nerve cells affected by MND.
Living with MND is a real game changer. Research into this devastating disease is needed to find the cure that is desperately needed. The hard work that has already gone into research could not be done without the dedication, awareness and money from all who have done so so far. Although there is no cure focussing on helping manage a better daily life for those affected is a goal. From research scientists are gaining an understanding has improved why MND surfaces in neurones and brain tissues.
University College London – discovered a biomarker; diagnostic test for ALS in early stage clinical trials
UK DRI Edinburgh – Dr Bhuvaneish Selvaraj and Professor Siddharthan Chandran discovered discovered that dysfunctional axons that connect nerve cells to muscles have a role in MND. They were able to show how they could restore function to the axon by boosting a cell’s mitochondrial or natural energy supply. The team hopes these findings will pave the way for new therapies that boost mitochondrial function.
The work of the scientists is groundbreaking and a must. Awareness is the key to many factors. It helps those affected with the condition in knowing they have support as well as if there is literature out there that people can access, those affected feel they perhaps do not need to repeat the chat over and over again. Stephen Hawking the scientist was diagnosed with MND; he lived for an amazing 55 years with the common type amyotrophic lateral sclerosis (ALS). Fellow Scot, Scottish rugby union player, sadly passed away now, was diagnosed with MND; set up charity My Name’5 Doddie Foundation Diagnosed with MND Rob Burrows, former England rugby league player who does so much still to raise awareness. There are so many people affected with MND that raise awareness; whether, you are running a marathon, holding a cake sale, walking the dog, raffling off a bottle of whisky, or a sponsored silence. It all contributes.
Some of us as at one time or another take our senses for granted: touch, sight, hearing, smell and taste. How would you feel if you were born without or to suddenly lose one of your senses? Can you imagine how it feels when you do not have the power within you to take control of your own senses. To answer the simple question that some asks you, Can you smell that?

A person not having their full senses can affect their well-being. It can take toll on an individual person’s daily life both physically and psychologically.
A person not having their full senses can affect their well-being. It can take toll on an individual person’s daily life both physically and psychologically.
For whatever reason the loss of smell for some can be extremely difficult to live with. A whole emotional journey that you would never really think of can be difficult for a person in everyday existence. For example living life as a family, that simple chocolate cookies baking in the oven, the wonderful aroma that is floating around the kitchen, have a taste says Mum, loss of sense of smell affects the way food tastes. But they taste it anyway.
The emotional journey goes on, the alteration in taste can lead to malnutrition . Other problems in the kitchen through lack of smell can be highlighted if we didn’t set a timer certainly did not smell it burning — food safety. Whilst we are talking about safety, home saftey needs to be highlighted. Alarms should always be fitted, especially for gas.
A great number of people with clinical severe depression have no sense of smell. 90% of covid patients lost their sense of smell.
A physical and social problem is personal life hygiene. Some people become obsessed. Concerned about the body odour; worry they smell, bath and shower constantly. Don’t leave the house — reclusive. Or they become the exact opposite don’t notice the smell at all and go around with a pungent odour and no- one wants to be near them and they make no friends.
Another problem is social relationships, a person with no sense of smell worries continually about keeping their child safe and looking after their newborn with all their own issues.
A great number of people with the loss of this sense say they feel lost. They don’t feel able to travel or guide within both familiar and new environments. for Example driving to work or finding their way around a new town
Some people with no sense of smell, especially after a brain injury can’t do their job.
On speaking with someone with a loss of sense of smell I was make aware that some folks adapt less well than others in the long term. There are a proportion of people with the loss of the sense hope that it will return, some accept it, others find that balance.
On speaking to a consultant neurologist, he spoke of when he was in clinic; when speaking to patients with Parkinson’s and asked if they could smell. The answer quite considerably was “now you come to mention it”. He did a research on smell assessments — 165 participants after death, striking finding 17% more likely link with Parkinson’s and smell loss.
There is no firm test to diagnose Parkinson’s, no individual blood test or scan to jump out and say this is it. However we do know that smell loss is an early symptom in a small number of people, therefore smell loss is an important feature.
People diagnosed with intermittent epilepsy also have a worse sense of smell.
So perhaps the next time we complain about that awful smell; it may be the manure in the farm field or wet dog after a long walk in the rain. It is time to be grateful that the ability to acknowledge these powerful aromas and be happy that the answer is YES I can smell that. Because unfortunately some people cannot.


The UK is a world class leader in cancer research, since 2001 all the hard work given by all at the National Cancer Research Institute (NCRI) has played a very large part in this. Numerous Clinical Trials and research have taken place and helped save the lives of those affected by cancer. The news of the charity winding down has came as a shock to many; patients and health professionals included. There will be many memories and stories to tell as the news hits of the Cancer Research Institute closure after 22 Years.
The charity grew over its 22-year lifespan, linked up with many partners including Blood Cancer UK, Breast Cancer Now, Prostate Cancer UK, Pancreatic Cancer UK, plus many more. Fabulous work has taken place including trials, research, specialist cancer groups, and networks. All for the greater good of those affected by cancer; working together scientists, researchers, patients, and funders to improve coordination of cancer research throughout the UK and beyond. Improving the lives of millions of people around the world.

Almost 400 000 new cancer cases are diagnosed every year in the UK. Understanding the way to treat the cancer for the best possible outcome is the goal. The NCRI was a partnership providing an area where researchers and those affected by cancer (patients, carers, etc) where they could discuss ideas, talk about research and trials and most importantly improve and save lives.
Prof Lawrence Young, Professor of Molecular Oncology, University of Warwick, said: “This is shocking news that will significantly impact cancer research and the development of new treatments in the UK. This is yet another blow to the UK research community and to the position of the UK as a world leader in cancer research”.
The abrupt closure of the NCRI will be a huge void in cancer research. The charity well and truly made its mark, bringing the whole cancer research community together covering the whole UK and beyond. Working to improve the overall quality of life of anyone affected by cancer. Understand the cancers, develop the treatments, lessen the symptoms! For some prostate and breast cancers NCRI came into its own with trials, involving radiotherapy combination treatments resulting in treatment reduction from weeks to days.
There were so many trials and research projects that have helped and will still go on to help so many people. A study showing Children with kidney cancers continue to be diagnosed with larger and more advanced tumours in the UK and Ireland than in other Western European countries, according to research presented at the NCRI Festival
A study by Dr Jonathan Wadsley, a consultant clinical oncologist let us know Patients with low-risk thyroid cancer can receive lower doses of radiation treatment. Thyroid cancer is relatively rare with a diagnosis of 3500 people per year in the UK, there were 434 patients in the trial. Contributing to a good study.
Professor Robert Huddart, Professor of Urological Cancer at The Institute of Cancer Research, London, and Chair of the NCRI radiotherapy working group (formerly known as CTRad), was saddened to hear the upsetting news. He said:
“The UK has developed the reputation for the delivery of high quality, innovative academic trials that has changed practice and improved the outlook and lives of millions of people around the world. In radiotherapy examples include trials that have introduced advanced technology reducing side effects and improving outcomes, changed prostate and breast treatments from five weeks or more to a few days.”
Professor Nick James, Professor of Prostate and Bladder Cancer Research at The Institute of Cancer Research, London, commented: “This news is astonishing. It could be devastating for people with cancer in this country.”
As a charity partner, Deputy Director of Research Blood Cancer UK, Sarah McDonald comments on the need for the need for clinical trials. Stating they are the route for those living with blood cancer to access treatment.
Sarah commented “It’s sad this long-standing multi-partner collaboration will be winding down. The partnership has had success, helping thousands of people get access to new potentially life-saving treatments” “NCRI has played an important role at Blood Cancer UK. We’re deeply committed to continue collaborating with researchers, patients, charities, and government to ensure the hard work of the NCRI isn’t lost.”
The NCRI have made this decision after much thought and debate. The uncertain economic and research environment has had an impact on the charity; After consulting with stakeholders, it was questionable that NCRI would be able to survive in the long term. Therefore, proving a risk of operational failure. Hence the decision to close.
Fiona Driscoll NCRI Chair stated: “It is with a mix of pride and regret that we write to inform you that, after 22 remarkable years, the NCRI will be winding down. This decision has not been taken lightly and has huge impact on the NCRI staff. We are grateful for their continued support, hard work, and professionalism at such a challenging time.”
This is dark day, especially for anyone affected by cancer. A massive blow for research and clinical trials. Remembering the extremely hard work that has taken place, passing on information is vital so the wonderful work of the NCRI is carried on.