Going chemical-free improved my health

It’s suspected that allergies, asthma, some cancers and reproductive disorders are increasing, in part, due to the use of chemicals in our homes and on our bodies. For 99% of common chemicals (i.e. those used in household and beauty products), there is too little information on their safety – we don’t know their effects on our health or on the environment.

When I had Chronic Fatigue Syndrome (CFS) I made big changes to my diet and to my lifestyle and I felt a lot better. But, it wasn’t until I switched to chemical-free living that I completely recovered.  I believe that was because my body could finally stop having to process and eliminate the various irritants and toxins I was inadvertently exposing myself to.

Also, I think going chemical-free helped settle my hormones. So many beauty products (including shampoos, conditioners and moisturisers) have hormone-disrupting chemicals in them.  This should be a HUGE red flag for everyone, but it should particularly concern people with hormone problems such as thyroid disorders and adrenal problems.

Cancer has also darkened our doors, so using chemicals when water and a special cloth with do the job just as well, if not better!

Also, any chemical you use in your home will go straight into the environment. So going chemical-free also helps the planet – win-win!

Going chemical-free is a bit of a lifestyle change, and can seem daunting – I know only too well. It’s hard to figure out how to clean your house without cleaners (right!?) and what about your body products?!

Here’s what I did, and it’s actually really quick and simple to make the switch – and TOTALLY WORTH IT!

I first made the switch when I was living in Australia, and there was a lovely local shop that made and sold their own plant-based beauty products, which was perfect. At that time I used a combination of traditional cleaning concoctions, like lemon, vinegar and bicarbonate of soda. It was alright, but a bit of a pain and not quick and easy.

Now I live in the UK have discovered better ways to be chemicals-free. I use various brands of organic, chemical-free shampoo and conditioner. I use organic coconut oil, sesame oil or this cream to moisturise and I use a range of body cloths (microfibre so no need for soap!), organic soap and shower gel.  I find the Norwex make-up remover cloths to be fabulous – they remove all make-up with just water, and gently cleanses your face without stripping it, so great even if you don’t wear make-up. I use them everyday!

Chemical-Free_Badges_GreenFor my home, I exclusively use Norwex products because they are the best I have found and I like the company’s ethos. I haven’t looked back. Norwex has made the transition to chemical-free living so much easier, because cleaning with their products is so quick and easy! (No really, it’s almost addictive and I am not a compulsive cleaner!).

Since I switched to Norwex EnviroCloths (and stopped using chemical cleaners) and Norwex Washing Powder my health has improved, son’s persistent nighttime cough has gone and I’m not freaking out about giving my kids Cancer by using chemicals on and around them (I know that sounds dramatic, but when it’s that close to home, these fears are real).

I also wouldn’t do without the Blue Diamond Bathroom cleaner, which is a natural product that gives that extra clean to the areas that really need it!  You dilute it down so much that it lasts for ages.

I’ve also just had first hand experience of the amazing Odour Eliminator, as our cats used the cupboard under the stairs as a latrine while we were on holiday – nice.  I’ve cleaned it all without using chemicals, and there is no cat pee smell – amazing.

I haven’t come across anything that I can’t clean chemical-free.

Still have your doubts?  Get in touch if you have any questions!

Be healthy!

C_14Caroline xxx

caroline@flourishwellness.co.uk

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Love your microbes

I heard Tim Spector’s talk at the College of Medicine’s “Food. Food the forgotten medicine pictureThe forgotten medicine” conference earlier this month. He is mad about gut microbes and health, and has written a book about it The Diet Myth.

We are covered in microbes – single-celled organisms that are invisible to the human eye and the oldest form of life on Earth. These micro-organisms live on us and in us – with a wealth residing in our digestive tracts. Each of us has a unique gut microbial blueprint – passed, in part, onto us by our mother during a natural birth, but dependent upon our genetic make-up (Goodrich et al. 2014). When we are healthy our microbes are diverse and abundant, and responsible for immune system development and long-term health (Romero et al. 2014).

99% of our microbes are beneficial. 

These “friendly gut microbes”, if you will, enable us to breathe, to digest our food, manage our weight, regulate our immune system and resist disease (Stearns at el. 2011).

Altered gut microbial diversity, or dysbiosis, plays a role in chronic and systemic disease, such as obesity, cardiovascular disease, diabetes, IBS, Ulcerative colitis and Crohn’s disease (Kinross et al. 2014), autoimmune disease e.g. rheumatoid arthritis, MS, Hashimoto’s thyroiditis, Grave’s diseases (Amy et al. 2013) and cancer (Schwabe and Jobin 2013).

It’s therefore worrying that we have grown-up being afraid of “germs” and systematically kill-off these life-giving, protective microbes with hand sanitiser, bleach, antibiotics. We can also cause dysbiosis through infection, lifestyle and diet.

Killing-off or not looking after our microbiome has long-term health consequences. In children, for example, taking antibiotics between 0 and 2years old is linked to increased chance of childhood obesity, growth impairment and allergies (Cox and Blaser 2014). We’ve likely all had antibiotics, and kids are given them routinely because of the plethora of infections they tend to get. If you must have antibiotics, you can buffer the effects by using a good probiotic and ensuring a diet and lifestyle that promotes the re-establishment of a healthy microbiome.

coral 3Our gut microbiome can be thought of as an ecosystem – a biological community of organisms that interact with one another and respond to the physical environment.. A high biodiversity of organisms, relative to climate, is characteristic of a healthy ecosystem – be it a coral reef, tropical rainforest, lake, field, desert or our guts. A high diversity of organisms ensures that each niche, or need, is fulfilled and gives back to the system. As such, an ecosystem is more resilient to short term environmental change and stresses, and therefore less susceptible to disease. Optimal climate is necessary for maintaining a healthy ecosystem.

 

The same is true for our guts.  To ensure optimal health, we need to nurture our gut microbiome by providing a favourable environment for the long-term (Xu and Knight 2015). In general, this means a whole foods diet including a diverse range of vegetables – including the pre-biotic containing ones such as Jerusalem Artichoke which help to provide the food for our microbes. The phytonutrients found in plants are irreplaceable and essential for good health – make sure you eat a high diversity of vegetables. Include some nuts and seeds, fish (for your omega 3 essential fatty acids) and whole grains and dairy. Limit red meat.

burger-1140824_1920A diet high in processed food is high in sugar, trans fats, saturated fat, additives and refined carbohydrates and is undeniably bad for your health, and your microbiome.  A bad diet can can drop your gut microbial diversity by 40%, which of course compromises your health and sets you up for disease.

Want to know what your gut is doing? It can be really useful if you have a chronic illness. I had mine done by a naturopathic doctor when I was diagnosed with Chronic Fatigue Syndrome.  It certainly helped me understand my health and take control of my health.  Though it seems like you need a referral by a doctor, which can be very difficult to get, visit www.mapmygut.com to find out what’s going on with you’re microbiome.

In the mean time, look after your microbiome!

Email caroline@flourishwellness.co.uk to book a FREE discovery session to talk about your health how diet and lifestyle changes can help.

Did you see my post about inflammation and your health? Have a read HERE.

Read how our cancer story began HERE

Follow me on Twitter @FlourishCP and on Facebook

Top tips for healthy eating

Last week I attended the College of Medicine’s conference “Food. The Forgotten Medicine.” It was really interesting and uplifting to hear that some doctors are now acknowledging that food is a cornerstone of good health.  They also recognised that the 0 – 6 hours of nutrition training doctors get in Medical school is insufficient (and could explain why your doctor is reluctant to discuss any dietary interventions).

I’m hoping that the role of the health coach will soon be accepted and respected by the medical profession. As a health coach (PhD) , I have the time and expertise to talk through your diet and lifestyle. To hear your concerns and to understand your unique experience.  I can then work with you, as an individual, to find the right dietary and lifestyle changes so you feel better for the long-term.

It was a shame that only one patient had a voice at the conference and that she was the very last speaker. Carrie Grant gave an brilliant synopsis of her story with inflammatory bowel disease, and how hard it is to take control of your health in the current health system. It’s difficult to be a knowledgeable patient – as I know only too well.  As Carrie put it, the consultant hold the power, “and they kind of like it”.

It was highlighted again and again at the conference that the typical “healthy’ diet that many people have been following for decades (due to government guidelines) is wrong and even dangerous.  The NHS recommends you “Base meals on potatoes, bread, rice, pasta or other starchy carbohydrates” – do NOT do this…

Top tips:

  1. Carbohydrates cause problems. Carbohydrates (e.g. flour, pasta, bread, rice etc) cause chronic low levels of inflammation that ultimately lead to disease e.g. Cancer, heart disease, autoimmune and inflammatory diseases (IBS, Crohn’s, thyroid disease, arthritis, ulcerative colitis etc). Carbohydrates therefore should NOT form the main component of a healthy diet (contrary to the NHS eat well guidelines).
  2. Fats are good. We need them – 60% of our brain is fat, what do you think happens to that on a low fat diet? But, we need the right kind of fats, ones that reduce inflammation rather than cause it. We need the omega 3 fatty acids found in nuts, seeds, olive oil and fish, and smaller amounts of  omega 6 fatty acids found in animal products. Processed food should be avoided at all costs as these are unhealthily high in omega 6 and trans fats, which are toxic.
  3. Fruit Juice is NOT healthy.  Fruit juice, fresh or otherwise, contains a lot of sugar. Without the fibre you get by eating fruit, this sugar goes straight into your blood and causes a stress response in the form of insulin production.
  4. Wholegrain is only wholegrain when it is the whole grain. You might want to read that again. Basically it means that a wholegrain ceases to be whole once you mill it. Milled grains are easy to digest so the sugar that it digests down into rapidly goes into your blood.  Wholegrain is more difficult to digest and so releases sugars slowly.
  5. Refined sugar alternatives are often no better. Sugar, in any form, will cause a stress response in your body. Many alternatives, like agave syrup, contain up to 75% fructose, which can alter the insulin pathway. It’s unclear exactly what sugar substitutes, artificial or otherwise, do to the body. You should avoid eating anything artificial. Natural sweetness that trick the brain are likely to cause problems with signalling.

If you’re suffering from a chronic inflammatory or autoimmune condition, making these few adjustments to your diet could have a big impact on your symptoms. There are lots of positive dietary and lifestyle changes you could make so that you can live symptom free, or even reverse your condition (as with type 2 diabetes).

Seek the information, make healthy choices, live well and feel better!

Caroline x

Ignoring your gluten intolerance

I believe that every one is unique, and has a unique set of foods that promote health and equally has foods which encourage disease. I don’t believe that gluten is the root of all evil and that everyone should stop eating it, but ignoring a gluten intolerance could have long-term consequences.

I have spoken with a lot of people who know that gluten doesn’t agree with them. They get bloated after they eat it, they have aches and pains and sometimes get cramps, yet they don’t want to stop eating “like a normal person”. I hear this time and time again, and I can completely relate to it. Change is difficult. It takes energy and effort, and when we are ill or fatigued – or suffering from the symptoms of gluten intolerance – it’s difficult to muster the will power.

I get it. I’ve been there. I have also been desperately ill. I was virtually housebound  at 27 years old for nearly 18 months. I ached all over, I had no energy and simply talking was draining. All the doctors I went to said that I was a healthy 27 year old. I needed to make a big change and to take matters into my own hands. I drastically changed my diet, my lifestyle and grew as a person.  Going entirely gluten free was a significant part of getting my health – and my life – back.

You may not be as ill as I was and you may find your symptoms manageable. But what is it doing to your body? If you have symptoms of dis-ease, your body is telling you something.

If you ignore your gluten intolerance, you may be setting yourself up for future health problems. Here are a few things to consider:

  1. Increased risk of cancer, heart disease, obesity and diabetes

Our digestive system is responsible for absorbing food as well as detecting and mounting an immune response to things that may harm us – usually bacteria or other mircoorganisms.

70% of our immune system is located in our gastrointestinal tract (Faria and Weiner 2005).

If you are gluten intolerant, immune mechanisms in your gut recognize gluten as an invader that needs eliminating and so your body activates an immune response designed to kill-off the invader. It’s a misdirected response as gluten is not an infectious agent. Mounting such an immune response is not only exhausting, but also dangerous – these first immune responses are designed to be temporary toxic storms to efficiently protect us from infection. Constantly or repeatedly activating this system leads to chronic inflammation – something that is directly related to increased risk of heart disease, obesity, cancer and diabetes.

  1. Nutrient deficiencies – malnourishment

Continuing to eat gluten when you are intolerant to it can cause the lining of your digestive tract to become inflamed, damaged and stripped of the protective mucous coating (villous atrophy). This damage stops nutrients from being absorbed properly and can lead to malnutrition, usually in the form of vitamin and mineral deficiencies. Symptoms can include fatigue, dry skin, brittle hair, poor concentration, frequent illness and failure to thrive in children – the list extensive. It’s worth bearing in mind that you can be nutrient deficient and over weight.

  1. Increased risk of autoimmune disease

In addition to being inflamed an unable to absorb nutrients effectively, zonulin (derived from gluten) can cause gaps to form in your gut lining. This is known as intestinal hyperpermeability or leaky gut. It means that food particles and bacteria can pass through your gut wall straight into your blood stream. If this happens, your immune system will go into overdrive to get rid of the invaders – and it stays on high alert for weeks, which is exhausting, depleting and potentially harmful. Leaky gut can lead to chronic poor health and the development of more intolerances, such as to the milk protein casein, and autoimmune diseases – where the immune system attacks the body. Most people with an autoimmune condition feel better on a gluten-free diet. Interestingly, components of gluten have a similar structure to protein structures in our bodies – particularly those within the thyroid. If you have an autoimmune disease, consuming gluten will cause your immune system to attack your body – there is a well-studied link between Celiac disease and thyroid conditions.

Autoimmune diseases include: 

Hashimoto’s thyroiditis

Grave’s disease

Celiac disease

Addison’s disease

Psoriasis

Rheumatoid arthritis

And many, many more!

I hope you’ve found this informative! If you’re considering going gluten-free, check out my Go Gluten-Free online coaching package. For just £10 (US$14.50) a week, this 4-week package provides you with the tools and guidance so you can make informed choices about your health and instigate positive and lasting change.

Launching June 24th 2016! Early Birds get a 25% Discount, so register today by emailing me now: caroline@flourishwellness.co.uk!

Look after yourself!

Caroline x

P.S. Don’t forget coach One2One – helping you to reach your health goals and to feel better.  I offer a FREE Discovery Session wherever you are in the world! Drop me a line HERE!

The truth about Gluten

We have all now heard of Gluten. But do we all know what it is and why we ‘should’ be avoiding it?

Cutting gluten from my diet was a huge factor in my recovery from Chronic Fatigue Syndrome (though I didn’t know it at the time), in shrinking my goitre and significantly reducing many of my Hashimoto’s Thyroiditis symptoms.

But, many people think that going “gluten-free” is a fad and that it’s just the latest dieting craze, and for some that is true. For others it is the difference between health and disease – and sometimes that disease is Cancer, sometimes it’s Crohn’s, which could mean losing your intestine, and sometimes it is an autoimmune disease that could continue to attack your body.

Many people don’t know if they should be avoiding gluten or not. These people tend to dabble in gluten-free living. They perhaps buy some items from the “free-from” ranges that now adorn supermarket aisles and feel somewhat virtuous when they manage to consume a gluten-free sandwich (if, of course, it holds together long enough it eat it). But does eating mostly gluten-free count? And what exactly is gluten anyway?

What is Gluten?

  • Gluten is a complex of proteins found naturally in the seeds of cereal grains.
  • The gluten protein types that can cause adverse reactions are glutelins (glutenin) and prolamins (gliadin).
  • These proteins are also responsible for the unique properties of gluten, which make it so appealing for baking – trapping air to enable dough to rise, giving elasticity to bread and dough as well as a chewy texture.
  • Gluten-containing seeds include: bulgar wheat, durum wheat, barley, rye, kamut, faro, graham, semolina, triticale, einkorn and spelt.
  • Gluten is used as a protein supplement (particularly in Asian cultures e.g. seitan), as a thickener in sauces, flavourings, medications, stock cubes and sweets.
  • Gluten is much more widespread in the Western diet, where processed food is more common and widely available.

Check out some of my gluten-free recipes HERE and HERE

What is Gluten Intolerance?

The term “Gluten intolerance” is often used to describe three conditions:

  1. Celiac (coeliac) Disease: Autoimmune disease, where the body responds with an overreactive adaptive immune response, triggered by gliadin and primarily concerning the small intestine. It may manifest several hours or days after consuming gluten. This response harms the delicate villi structures and lining of the intestine responsible for nutrient absorption. An inflammation response may also occur leading to leaky gut syndrome – where large proteins pass through the gut lining, and often leading to chronic poor health and the development of other intolerances. Celiac disease can be confirmed by a blood test for the relevant antibodies and biopsy, though negative results do not mean that you don’t have it.
  1. Wheat Allergy: Strictly speaking is and allergy and not an intolerance. This is an immediate and often severe histamine reaction to the presence of wheat (not specifically gluten). People may develop hives, shortness of breath and swelling – this is known as Type 1 hypersensitivity and is a different type of immune response to that of Celiac disease. 
  1. Non-Celiac Gluten Sensitivity (NCGS): This is the least well defined of the gluten intolerances. Currently, people who test negative for Celiac disease and who do not present with wheat allergy, but still feel unwell upon eating gluten are labeled with NCGS. They likely also have a “leaky gut” and a host of symptoms associated with a malfunctioning digestive system. People particularly susceptible include those with an autoimmune disease.

Should I quit Gluten?

Cutting gluten from your diet if you aren’t gluten intolerant is unnecessary, but many people are unsure. If you suffer from digestive issues –irritable bowel syndrome symptoms, bloating, cramps, discomfort, weight problems, if you have dry skin and rashes or if you feel very tired after eating gluten and have difficulty concentrating – it’s likely you have a problem with gluten. In which case, going gluten-free will:

  1. Help you achieve good long-term health
  2. Alleviate symptoms
  3. Increase your energy and improve your mood

C_14

Going gluten-free can be overwhelming as it’s in so many things and many of us include it in every meal and snack. You may wonder what on Earth you can eat on a gluten-free diet!

On June 24th I am launching my Go Gluten-free online coaching package. This is a 4-week package that will guide you safely through the tricky transition to gluten-free living. I provide you with information and tools so you can make informed decisions about your health and then implement lasting change. I also enable you to conclusively determine whether you are gluten intolerant and I’ll be on hand to answer your questions. Read more HERE or send me an email: caroline@flourishwellness.co.uk

25% Early Bird Discount if you register by June 17th! Just £30 to transform your health!

Follow my website HERE to receive the next Blog post straight to your inbox and of course Like my Facebook page!

Look after your health and be well!

Caroline x

P.S. Did you read my post “Is your immune system attacking you?”, you might find it useful in reaching your health goals!

Vegetable of the Month – Asparagus for June

Eating with the seasons is the best way to nourish your body and to care for the environment. Fruits and vegetables bought out of season have usually traveled a long way and are may have less nutrients as they are picked before they are ripe. Many of us are familiar with the “ripen at home” range in supermarkets, which usually leads to produce going rotten before the ripen.

Solve this problem, support local growers and your health by eating seasonably!

This month asparagus is in season in the UK (and from May to July). Asparagus is a flowering plant, from which the shoots are edible. Buy perky spears, not limp, and wrap in damp kitchen towel and store in the bottom of your fridge. It’s best to eat asparagus as soon as you can after picking, as the nutrient content diminishes reasonably quickly.

To cook, simply boil for 3 minutes, steam for 4-5 minutes or gently sauté. Many people like to add butter and salt. I find them delicious on their own!

Health benefitsasparagus 3

Asparagus contains a wealth of vitamins and minerals. It’s particularly high in Vitamin K, Folate, Vitamin B1 and B2, Selenium, Vitamin C and E, many of which are antioxidants and confer a wealth of health benefits.

Asparagus is known for it’s diuretic properties, helping us to eliminate waste, and therefore cleanse, by encouraging urination. It also has anti-inflammatory properties, due to the Saponins and is therefore considered potentially helpful in reducing risks of chronic inflammatory disorders and associated disease, such as cancer, heart disease and diabetes.

Asparagus also great for maintaining a healthy digestive system, and is commonly used in traditional Indian Medicine, Ayurveda, for promoting digestive health. Asparagus is high in both fiber and protein (for a vegetable!) and it contains Inulin. Inulin is a carbohydrate that bacteria in our digestive system feed on. These bacteria aid absorption of nutrients, reduce allergies and help reduce the likelihood of colon cancer.

Happy Eating!

Caroline x

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How much sugar?

Sugar has been in the news a lot recently, and maybe you are sick of people talking about it. Maybe you don’t want to feel guilty for that glass of coke or that extra slice of cake, and fair enough – it’s your choice. But what if it is seriously affecting your, and your family’s, longterm health?

It’s easy to listen to the news and think that sugar is a “fat” person problem, or that you don’t drink sugary, carbonated drinks, so you’re ok. But unfortunately that’s not the case.  Sugar, in any form (fruit sugars, honey, maple syrup, corn syrup..), is potentially harmful – yep, you read that right, but hear me out.

Sugar types

The negative effects of sugar are numerous and far reaching – to the point that it was recommended by scientists years ago that it be regulated like tobacco and alcohol. The effects are that serious. It is that toxic.

I know that when I’m having an autoimmune flare-up – fatigued, headachy, joint ache, big puffy eyes (all because of my thyroid disease), the first thing I need to do is check the amount of sugar in my diet. And I generally don’t eat much sugar at all.

Sugar causes:

  • Metabolic Syndrome: diabetes, hypertension, liver problems, cardiovascular disease and non-alcohol fatty liver (Read more HERE).
  • Fat stores – when consumed in high doses, fructose overwhelms your liver’s ability to process it, so it gets stored as fat to stop it harming your body.
  • Hormonal mayhem – For a start, fructose suppresses gut hormones that tell you you are full (leading to over eating). Secondly, glucose causes your body to flood with insulin (a growth hormone), which is good and normal, but over stimulus can lead to insulin resistance and type 2 diabetes. If you have a condition that involves the endocrine system e.g. thyroid disease, then you need to have a think about sugar.
  • “Bad” gut micro flora bloom, leaving you bloated, sluggish and unable to digest food properly.
  • Tooth decay
  • Cancer risk and poor prognosis (read HERE).
  • Chronic Inflammation – all those underlying, background symptoms -aches and pains, arthritis, headaches – may relate back to sugar.

So, am I suggesting you never eat anything sweet again, including fruit? No.

I am suggesting that you take a look at how much of each sugar type you currently eat and whether the risks are worth it. Learn how much your body can tolerate and chose the types you consume wisely.

Of course I’m not telling you to stop eating fruit, just don’t under estimate it’s sugar content – always go for the whole fruit, which includes fibre and water to help your body deal with the sugar, rather than juices or dried fruit.

What should you do? Here are some absolute basics:

  1. Stop drinking soft drinks, fruit juices and squash/cordial – swap for tea, vegetable juice or water with lemon or lime.
  2. Start checking labels. Anything with more than 5% sugar is not a good option.
  3. Get in the kitchen – Clear out your cupboards and start cooking.  Get rid of your packaged, processed food. Buy fruit, vegetables, nuts, pulses and lean meat. You don’t need to be a master chef to put together a quick and healthy meal.
  4. Stop buying low fat foods – fat is not bad. Sugar is bad, and sugar gets turned into fat. Low fat foods are full of sugar.

Confused or don’t know where to start? Send me an EMAIL.

Or start The Reboot and start feeling better fast!

Flyer for webWe have made big changes as a family. I want to reduce the chances of more Cancer in my family and to keep my Hashimoto’s disease under control.

Sugar is at a minimum. We eat some fruit each day and have dark chocolate or homemade granola or muffins as a treat every now and then. It is difficult and sometimes we have to Reboot.

It is hard to live a low-sugar life, because it’s become the norm to consume a lot of sugar on a daily basis. It’s normal for kids to have sugary snacks throughout the day, and to top-up on sugar-fill fruit juices or squash. In fact, if you “deprive” your child of these tasty, toxic, treats you are considered slightly strange and probably a bit mean. I try to make it as easy for my kids as possible, and am usually ready with a healthier alternative, but it takes planning and motivation.

I think it’s worth it – I’m sticking at it for our long term health.

Are you on a low-sugar eating plan? How has it benefited you?

Waiting

(Caring for Cancer, Part 2)

Read Part 1 “How our Cancer Story Began” HERE

I never realized just how excruciating waiting could be.

We had already waited an agonising two weeks on the query-cancer pathway for the Consultant Oncologist appointment, and we had left with nothing more than the promise of more waiting. We had naively believed that we would walk out of that appointment with at least a possible diagnosis – it was a query-cancer after all, surely that was urgent? Admittedly the oncologist had stated that my husband did not have cancer, and it was only my absolute confidence in my research, plus a little tenacity, that had secured a follow-up appointment. But, still we had to wait.

We waited for the phone call. We waited with no answers, no plan, no control and no idea when we might hear. By now my husband was in chronic pain and, understandably, clung to the possibility that his symptoms were caused by an infection – after all, that was what the Oncologist had said.

My reality was different.

I had read the research papers. I had assimilated the data presented to me. I was convinced he had cancer, probably metastasized. I knew that with every day that passed his chances of a good prognosis reduced. But all we could do was wait.

My sleepless nights continued – full of anxiety, despair, silent tears and newborn comfort. In a strange way these quiet, long nights offered some relief – a private space to release emotions pent-up during the day.

In the day time anxiety, dread and fear plagued me constantly, but some semblance of normality had to continue. I had a three month old to nurse, feed and change, and a perceptive and inquisitive toddler that, quite rightly, demanded my attention. I had to run the house; do the food shopping, plan dinner, put the washing on, tidy up. I had to interact with other people – talk with neighbours, friends, the postman. I had to go through the motions of normal life. I had to keep it all in.

Staying in control of my emotions was hardest with my son. I struggled to be the happy, playful and present Mummy he knew. I struggled because the real me was fracturing and crumbling inside – unraveling in panic that we would be left alone because a diagnosis would come too late. If he caught me off guard, in his innocence and with empathy he would ask “are you sad Mummy?” My mind would gush with the adult out-pouring that I craved, and my heart longed to squeeze him tight in a possessive embrace and to simply sob. Instead, I would pull him close and allow a few tears to roll down my cheeks as he nestled, unaware and protected, into the crook of my neck.

Adding another layer to my anxiety was the constant threat that my husband might leave the country.

With his family overseas, and aware of the American-style of medical care, understandably his patience with the long, bewildering NHS process was reaching its limit. He wanted to fly away and check into a hospital that wouldn’t discharge him until they had uncovered exactly what was wrong, and treated him for it. Family and friends scattered across the globe were making suggestions; Germany, Costa Rica the USA… I had to admit, the idea of a quick diagnosis was giddily tempting, save a few key points:

  1. The kids and I couldn’t go with him. Our daughter, at just 3 months old, didn’t have a passport. There was a chance that if he got on a plane, I would never see him again.
  2. Being his advocate would be significantly harder. Even if I could follow him later with the kids, I was unsure of my ability to be his advocate in an unfamiliar medical system, living in a hotel and possibly operating in a foreign language.
  3. The NHS has a world-class specialist cancer treatment hospital. If the diagnosis was cancer, then the UK was the place to be.

I felt trapped. I selfishly wanted him to stay, but what if that meant everything happened too late? What if by staying it ultimately led to the worst prognosis? How could I stop him from going?

In truth, I couldn’t. Every day or so he would send me flight details and ask my opinion.

If I didn’t want my husband to leave the country, I had to take matters into my own hands. I had to make the NHS work for us – I could no longer wait for the cogs of the NHS to slowly turn on their own.

In and around being Mummy, housewife and nurse to my poorly husband, I contacted the Patient Advice and Liaison Services (PALS). I updated them almost daily with the lack of progress in my husband’s diagnosis. I spent hours on the phone, ringing the abundance of wrong numbers on hospital websites and waiting on hold to finally reach the relevant secretary or other admin person. I chased everything up and followed every possible avenue to check that everything was in place, all the paperwork had been done and the right people explicitly knew our situation.

Just in case all my efforts were in vain, I also organized my daughter’s passport. I gathered all the relevant documents and signatures and managed to get a photograph of my 3 month old looking straight at the camera with eyes open (no mean feat!). I also just about managed to hold it together in the Post Office when I was told they couldn’t accept my application because of a typo – the fear of my husband flying away without us was renewed and amplified. Somehow I managed not to burst into floods of tears as, at the same time, my toddler was having a meltdown near the stick-it notes and my daughter, strapped to my chest, was desperately head butting me for milk, which had by now, glamorously, saturated my breast pads and was trickling down my front.

 

At last, we received the phone call and were given confirmation of the ENT oncology appointment – just a few more agonizing days to wait. Thankfully this was enough progress to quell my husband’s itchy feet.

Midmorning the day before the ENT appointment, the Consultant Oncologist called my husband at home, which in itself seemed odd. Apparently, while showering, the ‘diagnosis’ had occurred to him – a rare and treatable bacterial infection known as ‘Cat Scratch’. He’d already booked blood tests to confirm his suspicion.

My husband was beaming – in an instant our future had gone from looking bleak to no longer being under threat. He wanted to celebrate, and I wanted to join him.

But I couldn’t celebrate.

My hugs and smiles were strained – something wasn’t right. I didn’t believe it was Cat Scratch – I knew it wasn’t Cat Scratch.

Cat scratch had come up as a possibility in my literature search when I first suspected something sinister. I had eliminated it as an option because the symptoms and timeline didn’t quite fit. I had concluded Lymphoma and/or an abdominal tumour. From my research I had concluded cancer and, as always, I trusted my research.

This was not what my husband wanted to hear from me. He was ready to cancel the ENT oncology appointment – after all who was I to diagnose cancer when the oncologist said infection?

Thankfully, he agreed to go to the appointment.

In the waiting room my Mum rocked the pram. I buzzed with nervous anticipation and my husband fidgeted. This had to be the appointment when things moved ahead. Finally we were called in. After a series of examinations and questions, the oncologist paused, looked at his hands then announced that he thought my husband was seriously ill, and that he probably had been for some time. His best guess was Lymphoma.

Wow. The sense of relief was almost overwhelming – at last someone was on the same page as me, now they surely must take quicker action. But relief was quickly replaced by reality and a renewed terror – this was really happening.

He was booked in for a biopsy and finally was given a referral for a CT scan – something I had asked the GP for at the original appointment. But, again we faced weeks of waiting – waiting knowing that the most likely scenario was cancer, but not knowing the severity or prognosis.

Anxiety hit a new level and the waiting became unbearable. I reverted back to what I know best – proactivity, research and data. I organized paperwork and booked CT scans at private clinics (some 6hours drive away) in the hope of expediting diagnostic tests. But perhaps most significantly, I presented the facts of our experience to PALS and pointed out that the Government’s Cancer Pledge is  “A maximum 2 month (62 day) wait from urgent referral for suspected cancer to first treatment for all cancers” – we were on day 65 and looking at a further 14-21days before diagnosis.

The day after I sent that email my husband had a CT scan. Two days later he got a phone call asking him to go to the hospital immediately for a biopsy of his swollen lymph node.

A few days after surgery, my husband attended the blood clinic appointment booked to test the Cat Scratch hypothesis. This was the only appointment I didn’t attend – I had the kids and it was supposed to be a routine blood test. However, unannounced the Consultant Oncologist turned up to the clinic and presented my husband with a diagnosis:

Cancer. Metastasized Germ Cell Carcinoma, including a 7cm mass in his abdomen.

 

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How our Cancer story began

It all began one evening just after I had tucked my son into bed and was heading to bed with our 4-week old daughter, ready to nurse her for the umpteenth time to try to shift my mastitis. My husband strode out of the bathroom and presented me with his upper thigh; “does this look normal?”. “No” was my swift and direct response to his question about the golf-ball sized protrusion, followed by “you should definitely get that looked at”.

The GP referred him urgently to the hospital, suspecting an inguinal hernia, which apparently can be quite serious. Once he had an ultrasound it became clear it was a swollen lymph node. Quite swiftly it was decided that the best course of action was to surgically remove it – there and then and under local anesthetic, which they did – and not very delicately.

In the days and weeks afterwards, including over Christmas, he suffered horribly from Lymphedema and nerve damage. Finally, in the New Year, the histology results came back – “Negative for Cancer; Reactive Lymph node”.

Phew – we were relieved, or at least we should have been.

I didn’t feel relieved. I felt restless. The phrase “Reactive Lymph node” kept running through my mind. Why was it reactive? What was it reacting to?

I have a PhD in immunology, and this wasn’t making sense. Why were the doctors not asking questions? Rob had had no signs of infection. No illness, no injury, cut or abrasion – nothing to explain a “Reactive Lymph node”. When we raised these questions, we were told that “in the UK we practice evidence-based medicine” – i.e. doctors don’t go hunting for disease, they wait until it presents itself. In general I think that evidence-based medicine is all well and good, unless the presentation of disease is sat in a jar of formaldehyde in the hospital basement.

A month or so later a lymph node in Rob’s neck, near his collarbone, swelled up. It was a weekend and I was fed up with the lack of action surrounding Rob’s health. This was “evidence” and I was not going to let this one go.

I spent the weekend researching. As I mentioned, I have a biology-based PhD – I am used to using search engines to find relevant scientific and medical research. I am also able to read, interpret and assimilate the information – a skill set I never dreamed I’d use for my husband’s health.

By Sunday lunchtime I had “diagnosed” my husband with Lymphoma and/or a large abdominal tumour, probably metastasized.

I didn’t sleep that night. I knew. I was the only person in the whole world who knew how ill my husband really was.

Fear set in.

First thing Monday morning I booked the earliest doctor’s appointment, dropped my son off at a friend’s house and drove Rob and our daughter to the surgery. In the doctor’s office I sat down, put Sofia on my boob and resolved not to leave until we were given a viable course of action.

Luckily, our GP is a very sensible and intelligent man. I am sure he could detect my fear. He was also perceptive enough to detect the choice phrases and medical terms (that I had memorized the day before) I was using to alert his attention to the seriousness of the situation, without terrifying Rob.

Rob was put on the Cancer-query pathway. In NHS terms this means you get to see a Consultant Oncologist within two weeks. I left the GP’s appointment relieved – thankful that I had been listened to, taken seriously and that we had a way forward. I think Rob was a bit numb.

However, my feeling of relief was short-lived.

Two weeks is a hell of a long time when you know your husband has Cancer, but you have no idea of the severity, the spread or the prognosis. Family life continued, though sleep was pretty elusive.

The day finally arrived.

Just as Sofia filled her nappy we were called through to the oncologist’s office. I handed her to my Mum who would join us on hospital visits as our mobile babysitter so I could continue to nurse my daughter through the delays and unpredictability of the NHS, while being child-free for the important bits.

Ridiculously, upon reflection, we had built this appointment up to be the one where we would be told what was wrong with my husband – essentially I was expecting a diagnosis, or at least a preliminary one. I mean, I had diagnosed him from the literature, surely to an expert in this field it would be obvious?

After taking Rob’s medical history again (notes do not get passed on or if they do, they do not get read), the oncologist examined Rob. By “examined” I mean he felt his glands in his neck in much the same manner your GP does when you have a common cold.

That was it.

He then declared Rob Cancer-free.

Rob was good to go. He had just got the “all clear” from the Consultant Oncologist, who also happened to be the Head of the Department. It was the news he had been waiting for. He was not dying of Cancer!

I, on the other hand, was furious. How could he feel his glands and declare him Cancer-free? My eyes stung with tears of frustration and I did not get up to leave.

I ran through every single symptom – every symptom, that from my literature search indicated Cancer – and not only that, but metastasized Cancer. Despite this, the oncologist told me “none of those symptoms explicitly indicate Cancer”.

My response? “None of them rule it out”

Poor Rob. He so desperately wanted to believe the oncologist – after all he was the expert and he was saying “infection”. I just couldn’t let that happen, I knew he did not have an infection – tempting theory, but it just did not fit. I trusted my research. I was standing my ground.

“My wife has a PhD in immunology”, Rob said by way of explanation for my insistent questioning, which was being met with some bewilderment.

We went round the loop of the infection argument again. At each point I countered with a reason why it was not an infection – no fever, no illness, it first presented months ago, his visits to the tropics didn’t fit the timeline, no scratches, no abrasions, no sores… The list went on. Again, I resolved not to leave until we had a viable way forward.

We were at loggerheads, so I concluded with this:

“You cannot rule out Cancer without conducting a single diagnostic test.”

On that point, there was no room to argue. Though the honest, and somewhat defeatist, response from the oncologist was “I don’t know what tests to request”.

No problem – I have a list! The top of which was a fine needle aspiration/biopsy of his swollen supraclavicular lymph node (the one in his neck). Add in some blood work and a CT scan and we’re good to go!

Of course nothing is quite that quick and simple – his immediate response was that the ENT (Ear, Nose and Throat) oncologist had been on holiday and was backed-up for weeks. But, he booked blood work and an x-ray and set the wheels in motion for more specific diagnostic tests. It was a way forward at least, even if it meant more waiting.

The next few weeks were fraught with uncertainty, confusion, frustration and fear.

Continue reading this story  HERE

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How did your Cancer story start?  What was your biggest challenge in those early days? 

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You may also like: Caring for Cancer: 6 things I learnt and My Thyroid Story – Hashimoto’s Thyroiditis

If you’re Caring for Cancer and would like coaching and guidance on how to be proactive, the best ways to be an advocate, help with food, nutrition and support then get in touch caroline@flourishwellness.co.uk and we can arrange a time to chat.

 

 

 

 

World Cancer Day!

It’s World Cancer Day today! We’ve got our Unity Bands – have you got yours?

Most of us know someone who has been, or is, affected by Cancer.

1 in 2 people born after 1960 will get Cancer (Cancer Research UK).

Cancer is a horrible, indiscriminate disease that can affect anyone at any point depending on a combination of genetics, lifestyle factors and triggers – we desperately need to know more about it.

My experience of my Husband’s Cancer was terrifying, life-altering and both humbling and empowering. You can read more about what I learned from that experience HERE. Having seen Cancer up close and personal, I am determined to do everything in my power to reduce the chances of my family being affected by it again.

40 % of all Cancers are due to lifestyle (Cancer Research UK).  

It’s no guarantee, but as a family we have changed our lifestyle and diet in order to minimise our risk of Cancer, or secondary Cancer.

Being a younger person, or family, with a Cancer diagnosis can be particularly isolating, but Shine Cancer Support provides an amazing network for both Cancer patients and carers. If you’re in your 20’s, 30’s or 40’s and are affected by Cancer, then give them a shout.

Have you experienced Cancer as either a patient or carer?  How would you describe your experience?