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

To get my posts straight to your inbox, follow my blog via the button on my Homepage. You can also Follow me on Facebook and Twitter.

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

If you liked this post, let me know – click the like button and share it with your friends!

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.

 

 

 

 

7 things you should know if you take thyroxine (T4)

Today I booked myself another blood test to check whether the thyroxine (levothyroxine, T4) dose I am on is keeping my other thyroid-related hormones within normal range. I have Hashimoto’s Thyroiditis – a chronic autoimmune condition that, if left untreated, can be a serious problem.

Each time I collect my thyroxine from the chemist he tells me not to have it with milk. I then tell him that I’m dairy intolerant so it’s not an issue. Recently I started wondering what it was about the milk that was a problem. And, are there other things we should be aware of that we aren’t routinely told?

Whether you have Hashimoto’s thyroiditis or another form of hypothyroidism, you need your thyroxine to be working so you feel your best and stay healthy long-term. This is important stuff!

This week I went back to the original scientific literature to check a few things out. Here are some of the things you need to know if you take thyroxine:

  1. Most people on thyroxine have Hashimoto’s Thyroiditis (Davis et al, 2015) – an autoimmune disease that will not go away. It seems that many people on thyroxine don’t really know why they are on it. If that’s you, don’t panic, just book an appointment with your doctor to check it out. Your doctor will explain the medical reasons behind you taking thyroxine and whether or not it is an autoimmune condition, and together you can take control of your health from there.
  2. Thyroxine (T4) is the hormone our thyroid is struggling to produce when we are hypothyroid. It comes in several different forms, but the most common (especially in the UK) is tablet form of synthetic T4, commonly known as Levothyroxine.
  3. Many things affect how well Levothyroxine works in replacing your natural T4 supply.  For example, whether the dose is right, if we take it regularly and whether it interacts with other things that may stop it being absorbed properly into our body.
  4. Levothyroxine guidelines recommend taking on an empty stomach first thing in the morning. This is supported by Bach-Huynh et al. (2009), who also recommend fasting for 1 hour afterwards, and highlight that it can take up to 4 hours for levothyroxine to be absorbed. The idea behind fasting is to maximise the chance of it being absorbed without something we eat interfering.  Do you wait an hour to eat after taking thyroxine? 
  5. Common “morning” foods and habits that can reduce your thyroxine absorption include coffee, soy, grapefruit juice, high fibre foods (e.g. bran, granola and wholemeal bread) and multivitamins that contain calcium and iron (Andrade 2013).
  6. Levothyroxine needs high stomach acidity to be properly absorbed (Centanni et al. 2006) – something people with Hashimoto’s Thyroiditis usually lack!
  7. Levothyroxine can lead to dairy intolerance as it inhibits lactase production (the enzyme needed to breakdown milk sugar). Unsurprisingly therefore, 79% of people with Hashimoto’s in one study were found to be lactose intolerant (Asik et al. 2014). Lactose is often used to “fill” thyroxine tablets, so if you’re concerned about this talk to your doctor about possible alternatives. I’m not sure if this was what my chemist was referring to – I haven’t come across any other milk-related problems with taking levothyroxine, apart from maybe that calcium reduces absorption, have you?

How do you know if your thyroxine is working?

If you keep going back to the doctor and get a higher dose of thyroxine, you may be doing something that is stopping it from working properly, and perhaps you should discuss this with your doctor on your next visit.  Otherwise, try a few things. 1)  do a Symptom check (I am a BIG advocate of this and use it regularly with my clients – it reminds us that we are experts of our own body and only we know how we feel). If you’re having the tell-tale hypothyroid symptoms of fatigue, aches and pains, brain fog etc, then it’s likely you need to review your thyroxine dose or the way you take it. 2) get a blood test and discuss with your doctor whether your hormone levels are within normal range.

Other factors can affect the dose of thyroxine you need, like life-stage and weight, so  make sure you get checked periodically. Also, be aware that you can be within “normal” range and still feel rubbish – that is where point 1 comes in and you will probably need to consider dietary and lifestyle changes to reduce your symptoms. Give me a shout HERE if that’s you!

Do you have a “must-know” fact about thyroxine (preferably backed up by science)?  Let us all know by commenting below.

Remember, if you have ANY concerns about your health or questions about why you are on thyroxine, please discuss this with your doctor (not google).

Don’t forget to share and like this post especially if you know someone who could benefit!

Be well!

Caroline x

5 reasons to be eco-friendly (apart from saving the planet)

I have always been aware of my impact on the environment and have tried to minimise it, but it’s all too easy to become complacent – to get caught up in consumerism and to find excuses for our poor choices.

Being eco-friendly can seem like and up-hill battle – remembering our reusable shopping bags, rinsing out the cans for recycling, car sharing and spending money on more sustainable choices.

Plus, it’s easy to turn a blind eye to the impacts of our daily decisions, particularly if there is no immediate personal cost. We don’t see the result of our activities – “out of sight out of mind”.

 So, apart from saving the environment, is it worth the time and the effort to be eco-friendly?   In my opinion? YES.

5 reasons to be eco-friendly (apart from saving the environment): 

  1. Save money: You can slowly but surely save a considerable amount of money by making sensible eco-friendly changes. Simply turning off electrical appliances when not in use, turning the tap off while your brushing your teeth and putting lids on saucepans while you’re cooking will all save you money. Further to those energy and money saving tips, making sustainable choices daily will also save you money, for example investing in LED bulbs, buying second hand furniture, starting a vegetable patch.
  2. Reduce chemical exposure: Exposure to chemicals is thought to be contributing to the rise in Cancer prevalence, endocrine disorders and fertility problems. Many chemicals used routinely in homes, like those in cleaning products, haven’t been safety tested (see REACH) – so their effects on our health are unknown. Replacing my cosmetics and cleaning products with natural, more eco-friendly, choices was a big factor in my recovery from CFS. Here are the chemical-free products I use now.
  3. Get moving: Choosing to walk or ride a bike rather than getting in your car will increase your incidental physical activity and have a positive impact on your health!
  4. Help your local economy: Buying local food and produce supports independent farmers and small businesses while reducing your carbon footprint and connecting you with your community.
  5. Boost your health: Eating fresh, wholesome, local and seasonal foods will keep you connected with your environment while providing you with the best nourishment – no need for all that processed, additive-riddled food from the supermarket!

Chemical-Free_Badges_Blue

Making a Change

It’s hard to make changes, and it’s even harder to be the exception – to battle consumerism! But it is worth it and it is possible to make a significant difference with just a few small changes.

Start small and set yourself 2 -3 changes/goals and actions to implement this week. For example:

Goal 1. To take shopping bags to the supermarket. Action strategy: Leave some bags in the boot of your car.

Goal 2. To turn off electrical appliances at night. Action strategy: Walk through each room before bed and shut down every electrical item.

What ONE eco-friendly change are you going to make this week?

Ask me about NORWEX“Radically reducing chemicals in our home”. Eco-friendly cleaning products to reduce plastic and chemical use. 

GlobalMission

My Thyroid Story – Hashimoto’s Thyroiditis

We all have a story – something that has led us to where we are today. My health, and that of those around me, has repeatedly shifted the course of my life, changed my perspective and led to some serious personal development.

I have Hashimoto’s thyroiditis – an autoimmune disease that causes hypothyroidism.

This diagnosis came after I had been gluten-free for about 6 months, having put the family on a gluten-free diet because of symptoms my son had (dry skin patches, distended stomach etc). One day I came across a lonely packet of normal (full of gluten) biscuits. Being human, I couldn’t resist and I tucked into them. The next day my thyroid was the size of a tennis ball (or there abouts!).

Aside from “Gerty the Goiter” I also had or developed these lovely symptoms:

  • Brain fog
  • Fatigue
  • Muscle pain
  • Joint aches and pains
  • Muscle weakness
  • Weight loss
  • Headaches
  • Hair loss
  • Carpel tunnel syndrome

A blood test showed that my Thyroid Stimulatory Hormone (TSH) was ridiculously high at 96 (normal levels are approximately 4). My TSH was so wildly out of range because my immune system had been attacking my thyroid gland and preventing it from producing adequate amounts of the hormone Thyroxine (T4). As a result my pituitary gland was churning out TSH to tell my thyroid to produce more T4, but to no avail. I also tested positive for thyroid auto-antibodies.

Hence, I was diagnosed with Hashimoto’s Thyroiditis. Finally I had a reason for feeling tired and cold my WHOLE life (or at least since I was 15).

So, I was put on Thyroxine (replacement T4 hormone).

It occurred to me prior to taking it that Thyroxine stimulates metabolism. I was already struggling to maintain my body weight and, sure enough, as soon as I took the Thyroxine my body crashed. I became bedridden within 24hours and all my symptoms had worsened – it felt like my Chronic Fatigue Syndrome (CFS) days.

At the time I was caring for our two kids and my husband who had Cancer (read about our Cancer story here), so I simply couldn’t afford to be ill.

I had to take control of my health immediately. I did so by radically, but safely, adjusting my diet and lifestyle. Within two weeks I had more energy than I had had for years and my thyroid/CFS symptoms disappeared.

Looking back, I now know I was right to go to the doctor as a teenager with fatigue, as a student with exhaustion, anxiety and muscle aches and as a post graduate with persistent colds and lethargy. Each and every time I was dismissed as needing more sleep or for just being “a student”. In reality my body was struggling to deal with an autoimmune disease.

I don’t blame the doctors for this. Yes, it’s frustrating, but really it is a reminder that we need to be proactive and tenacious about our health – reconnect with our body, listen when something is wrong and then take action.

I’m being proactive about my health by concentrating on reducing the effects of this incurable disease so that I stay as healthy as possible for as long as possible!

Do you have thyroid issues? What are your symptoms and how do you keep them under control?

 

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?

 

10 things I learned from Chronic Fatigue Syndrome / ME

I was diagnosed with Chronic Fatigue Syndrome (CFS) or myalgic encephalomyelitis (ME) in 2010.  I had been struggling to function for nearly a year and been told repeatedly that nothing was wrong with me – all tests were normal. I got CFS as I was writing my doctorate thesis and after having a really bad stomach virus that my body simply couldn’t recover from.

I was bedridden and/or housebound on and off for about 18months. I had extreme fatigue, brain fog, headaches, fibromyalgia – muscle aches and pains. I was uncontrollably losing weight, despite a voracious appetite, and my digestive system was playing up. At one point I also lost my vision.

It was a really hard time, though in amongst it all I completed my doctorate (yep, with brain fog…) and got married (albeit in slow motion)!  Despite those achievements, I faced the terrifying possibility that I wouldn’t ever be able to work or to have a family – how could I have kids if my arms were too weak to hold them?

It was time to take control of my health. I slowly managed to get myself functioning again by making significant changes to my diet and lifestyle. I have to keep a close eye on my health, particularly in light of a new diagnosis, but I am now able to have a busy, full life and I have two kids (who I can hold, cuddle and run around with!).

Here are 10 things I learned from CFS

  1. We don’t have an infinite supply of energy – diagnosed as a twenty-something this was news to me! It shouldn’t have been – I had spent a lot of my life feeling exhausted, but I had never really acknowledged or accepted it. It wasn’t good enough to be tired all the time – “I shouldn’t need to rest”, “I should keep going”, “naps were a waste of time” etc. I inevitably would pour another coffee or eat something sugary to see me through, then crawl into bed at 9pm.
  2. Energy should be spent wisely – Once you realise you only have a certain amount of energy to spend in a day, and that that amount is somewhat limited, you have no time for people and things that waste it – and that’s ok.
  3. Who gives energy and who takes it away – I realised that I invested a lot of energy into people. When I had CFS those who contributed to my life in some positive way and those who drained my energy became strikingly apparent. This was a really important life lesson. I stopped following-up with the “takers” and I felt immediately better. This was a clear lesson in self preservation.
  4. I am an introvert – and proud! – Despite having a keen interest in psychology, I hadn’t previously dwelt on, or investigated, which area of the various personality continuums I fall into. A very good friend of mine recommended I read “The Introvert Advantage”, by Marti Olsen Laney. For me it was life changing! I strongly related to this description: “Introverts draw energy from their internal world of ideas, emotions and impressions – they are energy conservers”. I realised that I had been living under the guise of an extrovert – perhaps to “fit in” to the extrovert world of science (which is bizarre as many scientists are introverts!).
  5. Physical activity doesn’t have to be high energy – many people with CFS are told that exercise is good – and for some a staged exercise regime works well. For a many years before CFS I would push myself into going to the gym, to swim or go to aerobics classes. In all honesty I hate the gym. I find nothing pleasurable in going at all, and now that makes sense. I much prefer being physically active outside, surrounded by nature or by positive non-judgemental people – its energising. I also realised that I don’t need to keep up with other people’s expectations of what a healthy exercise regime should be – its unique to me.
  6. My biggest energy drains – small talk, rubbish television, sugar, caffeine, anxiety, anger and stress.
  7. My biggest energy sources – one to one conversations with interesting people, time alone being creative and thinking, taking the time to enjoy and savour a really good cup of tea (caffeine-free), yoga, warm and nourishing food.
  8. My body knows what it needs – I just have to listen. For a long time my body had been giving me signs that things were not going well, but I did not acknowledged them. Had I been more connected with they way my body felt, and had a higher respect for it, my dip into the world of CFS may not have been so dramatic.
  9. Epsom salt baths are amazing – I believe everyone can benefit from bathing in Epsom salts! It rebalances magnesium deficiencies, soothes aching muscles, helps with sleep and is thought to encourage the elimination of waste and toxins (sip water while you bathe).
  10. What matters in life – who and what deserves my precious energy. I decided that I deserved my energy – my health was worth fighting for, that I wanted kids and opportunities to live a full life. My kids and family are worth my energy and so are the unique and beautiful people that I am lucky enough to call friends.

This is my experience with Chronic Fatigue Syndrome and I believe it was directly related to my recent Hashimoto’s Thyroiditis diagnosis. Everyone’s is unique – from the triggers to the symptoms and the factors that help or hinder recovery.

Want to regain your energy and take control of your health? Get in touch for a FREE Discovery Session to find out how!

Do you have experience with CFS? Do you know someone with it or who has had it? What did your experience with CFS teach you?

Comment below and don’t forget to Like and Share this if you enjoyed reading it 🙂