My first official blog…Love (and Life) is like a butterfly…
When my mother died in 2000, I went to her beloved Corfu for a holiday in her memory, a few months later. Throughout my stay on the island that she loved, a white butterfly followed me everywhere. Not only did my mum love butterflies but she also compared her life to Wendy Craig’s character in the 80’s series of the same name. The show’s theme tune reminded us ‘Love is like a Butterfly’, originally tenderly written and sung by Dolly Parton.
Ever since then, each time I see a white butterfly I think of my mother’s Spirit. Fast forward to 2014 (January 17th onwards, to be precise) and the butterfly once again has become an extremely important symbol for me. But why you might well ask? Well, like every good story, let’s start right at the beginning…
Throughout 2013 and probably before, I had been experiencing terrible problems with my ENT area, going back and forth to the doctor in a truly desperate state. Antibiotics after antibiotics…I was feeling more and more ill and no doctor was listening to me. I thought I was going crazy. Then my legs stopped working at night…as if there was acid running through my veins. One of my two rescue dogs, JJ, would lie on my legs all night just to stop them from burning.
It was around the same time that JJ (the said rescue dog) kept licking the left-hand side of my neck. He wouldn’t leave it alone. I told my sister Monica that JJ was obsessing over one particular spot. In October 2013, I ran my third Half Marathon on behalf of a client, raising funds for Make-A-Wish Foundation® UK. Whilst I will never be a fast runner, normally I just keep going, regardless of the distance. This run was different.
Within five minutes of the start of the Race, I had the most agonising pain in my groin. My first thought was my late father whose secondary Liver Cancer had presented itself with this very symptom. I could barely walk, let alone run. Somehow I managed to get round the full course but afterwards I was in terrible pain. So I went back to the doctor again. I knew something was very wrong.
With all of my ‘non-sensical’ symptoms I ended up in a Neurologist’s office. This specialist was determined to find out what was wrong. He actually thought I had MS so tested me with a lumbar puncture and artery function ultrasound. It was during the artery function test, that the radiologist asked me if I knew I had a ‘lump’ in the base of my neck. No, of course I didn’t…
This lump, some weeks later, on 17th January actually, turned out to be Cancer…Differentiated Thyroid Cancer, as described to me on email from a very sorry consultant – the same Primary Cancer that Hazel had in ‘The Fault In Our Stars’. Mine was a 2cm by 1.2cm tumour that had been there probably for over a year. And so my life changed. Between now, six months on from January 2014 to BC (Before Cancer).
The world and its dog became a Google Doctor. From being told ‘it’s the best Cancer to have’ to ‘I’d rather have Cancer than Parkinson’s any day of the week’ to ‘I didn’t know you had problems with your Thyroid’ and others telling me ‘how scared they were’, my brain actually decided to shut out all of the white fuzz and internalise for the foreseeable future.
Some people surprised and amazed me, others disgusted me. Which says more about them than it does about me, so I won’t waste energy dwelling on it. But worst of all, all I wanted was my Mum and Dad to tell me everything was going to be OK. And that was never going to happen from six feet under. I had to find the reserves that have never failed me in 44 years after some of the other tragic things that have happened during four and a half decades.
Within two weeks of being diagnosed I had my Thyroid removed in a complicated operation, as the Cancer was deep rooted and ‘badly placed’. I ended up in the ICU (asking for my phone of course) as they thought I would require a tracheotomy as my vocal cords had been damaged. The right vocal cord will never move again. The left side is determined to flap about somehow. And my airway is now only 40pc. I have a voice. That is all that matters. I was told I needed two years of speech therapy. I gave up after six weeks and took to boxing and swimming. Give my body a shock into fight or flight, was the mindset. I am pleased to say my ENT consultant says I am a ‘miracle of science’ getting my voice to work without speech therapy. A miracle, like our friend the butterfly, transforming from a cocoon into a beautiful winged angel.
I started learning about Thyroid Cancer, which I believe is the new silent killer and its official symbol, the butterfly (as the Thyroid is shaped like a butterfly). No one really knows where it comes from or the WHY. I could see people recoil as I told them I had Cancer. It was as if they were expecting me to be dead by the end of the week or that I would be bald within a matter of days. The other end of the spectrum was people sharing their own story or Cancer (it can become a ‘competition of tragedy’ for some) or recanting tales of past or present Thyroid problems. And whilst I will always demonstrate empathy, sadly much fell on deaf ears as it was all white noise when I had to focus on myself and could barely remember my name.
The global fear I refer to is no-one’s fault but the way that Cancer is perhaps (mis) perceived in the UK. I have told Cancer charities that they are not helping patients by solely representing Cancer patients on TV and in print as ‘bald victims’ in a ‘fight’ and ‘angry’ with Cancer. I have never felt a victim and I don’t intend to and as a PR I am very well placed to push for change. Plus I look quite sexy, fit and happy (so I am told) which completely throws most people. This is not a battle. A battle implies one side is stronger. I will not allow myself to be put in a position of weakness.
As a past client of mine, T. Harv Eker, always says “How you do anything is how you do everything”. I just get on with it, always have, always will. Every ounce of energy is conserved for what is essential to Life Management. Nothing else really matters, other than my dogs who need me. I shut out other people’s dramas and focus on my health. Perhaps one day I will be a victim. We’ll cross that bridge when it is built.
Six weeks after my operation, I received radio-iodine treatment, whereby you are isolated in hospital and at home for two weeks after taking one very strong radio-active iodine tablet. Only Thyroid Cancer responds to this particular type of radiation and for me personally, it was agony. Weeks of agony. It was during this time that I was recommended to take Hemp Protein as an excellent source of healing protein for Cancer patients. My daily smoothie contains fruit, soya milk (I have been craving soya) ice, Hemp and cinnamon. Most impressive, I have to say.
My life is still being lived in a very small bubble. With a few important people around who make me feel normal and just ‘myself’ with no drama or fuss, I am able to cope – humour has been a great saviour and also interactions with friends past and present on social media. Coupled with (even more) good food, (even more) exercise, my two astounding dogs and a very simple life, I am able to work (most of the time) and find a way of managing extensive medication and hospital visits. My clients have been, in the main, amazing. Work is normality for me so a very important part of my ‘need’.
I am still in treatment, my next radio-iodine ablation being in the middle of September of this year. I have experienced a lot of frustration with a lack of information or consistency with treatment and am still often confused. I have had to kick and scream to be heard (albeit with a little voice) and am back with the leg pains and sore throat again. So back to the Neurologist this week. I simply crave normality outside the box of ‘Cancer Patient’, as I have discovered most Cancer patients do.
Until after my next treatment and a full body scan, I won’t know whether Cancer remains in my body. With the radio-iodine there is an increased risk of other Cancers taking hold later on, but for now I just focus on one day at a time. That is all we can all do in life, regardless of whether we have a disease or not. With the chaos that reigns currently around the world, who knows what will happen to us. We could be in the wrong country, have the wrong skin colour or religious belief system or find ourselves in the wrong aircraft or tower block, at the wrong, utterly tragic time.
I have learnt a lot about myself and also life since I was diagnosed with Cancer. I am extremely strong inside and very focused. I worry less, stress less and keep away from drama. I take each day as one project. I am kind to people, wherever possible, even if they are not kind to me. I am actually happier in myself and more contented than I ever have been. Which is ironic. I value the people around me who have been wonderful to me during this whole process. I have become great at boxing. My only fear is never seeing my dogs again. This saddens me when I let it enter my brain, the one per cent of negativity versus 99 per cent of positivity. But I know that negativity will render me physically weaker so it goes quite quickly.
And so to the conclusion of this tale. In my experience, love AND life really are like a butterfly. They come into your world as a miracle. They can disappear just as fast as they flutter in and they should make you smile and appreciate the simple pleasures in this gift called Life. Life and love are delicate, they need handling with care and you never know how long they will hover around.
This piece is dedicated to all Cancer patients, past, present and future and to the heartfelt emotion that the book ‘The Fault In Our Stars’ has brought out in me. I would like this opportunity to publicly thank the family members and friends that have helped me hold my head, hand and heart up high during the last six months and to my two rescue dogs, Pucci and JJ, without whom, I wouldn’t be here, positively typing this piece with such fervour. My spirit might have been less forceful or upbeat.
A white butterfly was there again today, right above a Sunday newspaper, as I read a piece about ‘The Fault In Our Stars’ and the real life character that inspired John Green to write this utterly breathless work. The white butterfly was hovering over the article in the shadow of the sunlight and then he or she was gone. And as for my mum and going back to the start of the story, in Heaven she can always be the everlasting butterfly she related to when I was a teenager. As long as she hovers around during the next chapter in my journey, that’s my only request.
In the UK, Thyroid Cancer is a rare form of Cancer, perhaps accounting for one per cent of diagnosed patients each year. Women are more prone to this type of Cancer than men and it also affects children and teenagers via four different strains. Whilst the neurologist I saw believes that the leg pain is a rare by-product of the Cancer manifesting in the body, another consultant disagrees and doesn’t believe symptoms of this Cancer are clear. My advice would be just listen to your body and get checked out if you don’t feel 100 per cent (particularly if your voice changes, you have repeated throat problems or if you have a lump).
(All details have been abridged for the purposes of this blog).
