Toxic Homes: ‘EMF’s, Dirty Electricity-why we are leaving the City for Health Reasons

Smelling RosesMy craving for the countryside is physically tangible and has been growing in intensity since Hana was diagnosed with her brain tumour. It started with the occasional whim that I wanted to move back to the UK (greenery!) and gradually become something so intense I feel it in my gut, and arms and fingers – everywhere! I am just desperate to be surrounded by nature.

“Listen to that!” Francoise, a psychologist and our Tomatis practitioner told me. “You must listen to what you are feeling.” So I have…

When we popped over to the UK after Hana’s lap band surgery I simply couldn’t get enough of the beauty of it all. I would choose outings that would force me to drive for long periods of time along the twisty country roads, I would ooh and ahh over the miles of green fields. “What’s that stink Mummy?” The girls would ask as warm wafts of manure would drift through the open windows. “That is the smell of the country my dears,” I’d smile serenely. Even the smell of Horse Poo – I found it all so delicious…

my concrete neighbours

These are my Concrete Neighbours, snap taken on a ‘relaxing’ evening walk. There is a current plague of high rise constructions within my vicinity! Eeek, get me outta here!

Then we returned to our fantastic sky high apartment in the midst of busy, city-like, Bondi Junction- in this place I feel like I am living in the sky – the most beautiful sunrises fill our place with pink light at dawn. We get nearly 360 degree view of Sydney – the ocean over the airport, Bondi, all the way to the bushy north and harbour glimpse. But in spite of the beauty of the views, the place is so wrong! Check out my concrete neighbours – there are five new high rises flying up around our building, all within a 200m radius! Suffocating. I am desperate to have my own feet on the ground rather than on the 11th floor and aching to be able to walk amongst greenery at my will – to be able to touch green things and breathe them in. To feel them near me. Interestingly, I’ve been told that such craving for nature can surround a spiritual awakening, so no coincidence really that this happened to me.

EMF’s – Electrical Magnetic Frequencies

So when did I first start being concerned about the health effects of Wifi and other EMFs (Electromagnetic Frequencies)? I can’t really remember, it’s been a slow growing concern for a year or two and now that I am able to focus on healing Hana’s brain it has become a more pertinent concern. Anything that could impact upon her neural re-wiring, healing and cancer regrowth needs to be obliterated!

Here’s a very simple explanation that will show why I’m concerned:

  1. Our bodies/cells/auric fields vibrate at a natural frequency – this is our natural ‘EMF.’
  2. Manmade objects can emit powerful ‘artificial’ EMFs.
  3. The natural frequency of our bodies can be altered by the frequency of surrounding electromagnetic waves.
  4. Distorting our ‘natural frequency’ can lead to inappropriate cellular function. 
  5. Inappropriate cellular function can lead to bodily dysregulation, systemic chaos = Disease.
  6. Metal in an environment can act as a mirror to EMF’s – sending off and around over and over again thus intensifying exposure.
  7. We already  know that very powerful radio waves destroy human tissue. Think X-rays, Gamma Rays…What about ricocheting EMF’s from things like Wifi’s? Telecommunications towers? Electricity Pylons?

Are my concerns ‘science based’? Yes. There have been numerous studies outlining the potentially serious health risks that can arise from excessive EMF but these concerns don’t yet affect a high percentage of public consciousness. I’m sure it will though, in time.If you want to know more about EMF’s and the potential impact it could be having on your health I recommend having a good google around Google Scholar. You could wait around for mainstream science to catch up and declare excessive exposure to artificial EMF’s as harmful to human health – but I’m certainly not going to. Intuitively, the ‘harmful EMF’ theory makes more than good sense AND there are a growing number of scientific studies that back that up, most of whom call for further research. Note that any mainstream ‘newsy’ website you come across will claim that science hasn’t proven it (yet) implying then to the average reader that everything is OK. I don’t think everything is  OK simply because it hasn’t been proven yet! You know from my journey with Hana how far ‘science’ can lag behind what is needed to be officially ‘proven’ and declared ‘truth.’  Yes, further research needs to be undertaken but I plan to protect myself and my children, as much as I can, until I get conclusive evidence. For a good look at published research so far this is a great, meaty starting point: Health Implications of Electromagnetic Fields, Mechanisms of Action and Research Needs, Singh and Kapoor, Advances in Biology 2014

Off to the ‘Country’? Yes, next week! 

I’d envisaged myself swanning around the Australian bush, a mini donkey or two in tow for school pick ups. Seriously, I want a mini donkey SO BADLY. However, living out in the sticks won’t work for my hubby’s clinic and also for ease of travel to our new Montessori school for the girls so we are looking at quiet, leafy, green suburbs. Our plans to move ASAP were thwarted by Hana’s tumour regrowth but we are now only a week away from DDay!

It’s also worth mentioning that I employed the expert help of  a building biologist, Jo Lia from No Tox Rox who gave our new abode a thorough check for  harmful exposures including mould, EMFs to dirty electricity. For us – exposure to harmful EMFs will be massively reduced by moving away from the telecommunications tower and surrounding hundreds of Wifi devices in our sky high block but nevertheless we still needed expert input on how to run our new home. A blog post Q&A with Jo on all aspects of building health is coming once we’ve moved!

Thanks for stopping by and for reading, please do share this if the conversation on EMF’s strikes a cord. You may have already thought about this and know what you think, on the other hand perhaps this is the first time you’ve considered the potential impact EMF could be having on you. Also, please stop by my Facebook page and say Hi. Catch you soon! NN xx

 

Quick Update – Hana will have surgery to remove tumour this week

hanasurgery2016Hello lovely readers:family and friends that I’ve been lucky enough to connect with on this journey!

There has been a change of plan with regards to managing Hana’s tumour as it is causing her some issues – the ongoing headaches are impacting pretty intensely on her quality of life. Although she is happy, so happy these days! Since we have decided against radiation we have chosen an above the eyebrow surgical removal of the tumour.

The surgery is booked for the day after tomorrow (20th April) and we would love your positive energy! Did you know that after the Sunday Night documentary went live a few weeks ago – whenever I gave Hana Reiki over that 48 hour period the amount of energy pouring out of my hands was so intense it hurt? I believe that phenomenal energy came from you.

Hana is coping very well with the decision, after a few tears and misgivings we have got her excited about some new crystals and pre-admission retail therapy! She has also just started to meditate in the mornings with me and we both visualise how we will simply cruise through this, hand in hand, heads high – her attitude is now as peaceful as mine.

We have a Reiki and Meditation playlist set up, essential oils selected and mixed and my armoury of Homeopathy and post op herbal supplements…we are different people to the ones that walked into this so blindly two years ago! I am grateful for so much.

Hold hands with us as we take this next step in our journey and move on with us to the next chapter. We may not be able to control what the next part of our story holds, but we can control our perception of it…and this will be our reality.

 

Why I ‘Let Go’ of my Daughter: The Hardest but most Precious lesson I’ve Learnt

Me and Hana Let GoI dare to stare the possibility of losing my dear daughter in the face. I will not run away from it…fear is poisonous and years of it takes its toll.  I want to heal, with my daughter. For me this meant accepting that although I must, always, keep trying to save her, at the end of the day, my daughter’s longevity is beyond my control. Accepting that ‘what will be, will be’ is the hardest thing I’ve ever had to do. 

I’m losing count of the number of young, cancer related deaths that I’ve encountered over the last two years. For those that live with a child with chronic health issues like Hana, death is always a possibility in our minds. We don’t want it to be there but it lurks in  the dark corners of the house, and the cruel but distinct, nagging feeling that you might outlive the beautiful child to whom you gave birth.

Please don’t misunderstand me, I don’t live my life thinking about Hana leaving me, I spend it thinking about her life!

I think about her future each day and I envisage an amazing future for her. I can SEE her pottering around her garden as an old lady. Meticulous as ever with grey hair tied up and she is wearing an apron – of all things – in the garden! I can see her get home from high school, throwing herself on the couch, trying on the role of a moody teenager but still shining that angelic light she so  uniquely radiates. I can see her… I believe in the power of those visions.

However, I believe I came here to learn something important and this is the point of this post. I came here to learn to LET GO of my baby girl. I came here to learn that her life and her soul journey is not mine to control or save (although this does not mean ‘inaction’ on my side). I believe I needed to learn to be at peace in the midst of her pain and suffering, without making it my own or being broken by it. And, most importantly I needed to learn to peacefully accept that her time here may be shorter than mine. This doesn’t mean it will be shorter than mine, it may be, but equally, it may not! It just means that I needed to learn this.

For two years, I wasn’t close to learning that. I kept vigil in the dark hours of the night as she gasped for breath with sleep apnoea and her body unnaturally exploded in size beyond what ever should be physically possible. How could her heart keep beating in that tremendous explosive assault? I lay awake in the darkness pleading with the universe to let my baby girl be with me, always, never, never apart. I researched every treatment option I could that might keep her alive and with me. But sometimes when I was utterly tormented by the sense of death watching from the sidelines, I would send a silent, furious scream into the darkness: “If you are going to take her, take her now! Just end these games, end her suffering! She is not a toy, stop playing with her!”  Then I would instantly be filled with desperation: No no no! I couldn’t lose her, don’t EVER take her! How I would I ever be able to breath again if she was taken from me? I was gripping on as tightly as I could to her fragile life, resigned that my ‘self’ would be destroyed by fear in the process.

Then, when peace began to rain down, (read these posts on that: My Spiritual Awakening: The blog post I never thought I’d write and Can you ever be at Peace while your child suffers?) I knew I needed to let her go.

After ‘waking up,’ I could clearly see Hana’s spiritual journey as intrinsically linked to mine but also separate and so I began to accept that she had a right to chose when she wanted to go. My ferocious battle to keep her alive needed to end. This DOES NOT mean that I won’t continue my quest to heal her! No! But it is a quest with an acceptance that:

“All shall be well. All shall be well. All in all manner of things shall be well.”

And so I held my hands over her in a Reiki treatment and delighted in the feeling that our souls were mingling. ‘I love you mummy, I love you mummy, I love you mummy,’ she murmured as the rush of energy began to flow out of the palms of my hand, stinging the tips of my fingers.  My heart swelled with love and gratitude and I let that feeling transfer into the energy flowing out of my hands. Silently, I spoke to her higher self, her soul:

“You are beautiful and I will love you for eternity. But I let you go! You are not mine. I love you, but you are not mine. I let you go, baby girl.”

She looked at me with those crystal blue eyes, shining that unearthly light she radiates, a light that old ladies and some sensitive individuals are so drawn to! It’s like they can see the angel inside of her. And I smiled at her, saying words I had muttered so many times in the midst of her pain:

“It’s OK baby, it’s all going to be OK.”

After two years of saying this but really, feeling it a lie,  I  believe it! I believe everything will happen as we decided it would as souls embarking on this tough journey. Yes, I believe together we chose this journey because we knew we’d learn such important things together. The result is liberating for us both.

I’ve set my baby free and I know she can sense it because she is glowing brighter than ever before:

‘Mummy,’ she says knowingly – we are walking to school, enjoying the fresh morning smell wafting off the Eucalyptus trees – ‘We are going to be together for ever and ever.’

I sucked in a lungful of that wonderful air, but it was really the beauty of her words that I wanted to absorb into every single cell in my body. ‘I know…’ I said,  squeezing her hand,’I can’t wait.’

Dear lovely readers…thank you for reading this. I’ve been compelled to share everything I’m going through ever since Hana was diagnosed and ‘Nurse Naomi blog’ transformed from ‘Flu, Hand-washing and Gastro’ to my journey ‘un-learning’ as Nurse and Mum. I am so honoured that you have taken the time to read what I have to say! Please get in touch via Facebook where I share daily bits and pieces and leave a comment below, I’d love to hear from you. If you think this piece might touch someone else, think about sharing it. Namaste xxx 

 

 

 

 

My Spiritual Awakening: The Blog Post I Never thought I’d Write

awakeThis is one of the most important things I’ll ever share with you. It makes me feel vulnerable and I’ll admit, nervous to do this. But the feeling that I must share is stronger than my fear of being laughed at or ridiculed. So here it goes…

Are you awake? Two months ago I wasn’t ‘awake’. But then to my shock (it was pretty dramatic) one day I ‘woke up’ and I had a full blown Kundalini, or Spiritual, Awakening.

I’ve hinted at the onset of a intense life change over a few blogs and Facebook  posts now – but I was waiting for the right time to share my Awakening with you, I’m not sure if this is the right time or if there will ever be a right time, so I’ll just have to trust that this time is now. First, if you are like me, who up until a few weeks ago, didn’t know what the heck a Spiritual Awakening was, here is an explanation, please feel free to add more details in comments as I’m sure many of you will know more than me:

What is a Spiritual or Kundalini Awakening?

I think it can be different for every person but one interpretation (that is also mine) is that it is  when an individual recognises their ‘soul’ self – that they exist beyond their physical form as an immortal soul.  Many awakened individuals ‘know’ that they lived many lives before and will continue to live many more lives, either in the physical form or as a spirit being transcending to higher realms or dimensions, depending on what lessons still need to be learnt (FYI a fascinating post to come soon on the scientific verification of reincarnation!). A spiritual awakening is not a religious phenomenon – spirituality isn’t confined to a specific religion.

What happens in a Spiritual Awakening?

There are some interesting descriptions of a Kundalini Awakening involving a feeling of previously coiled energy shooting up and down the spine, shaking, laughing, crying, sensations of heat or cold, plus the onset of physical experiences that transcend the usual five senses that we humans have – including clear-seeing and developed intuitive abilities. For some the onset may be gradual, for others it may be rapid and dramatic, for me it was intense, rapid and very dramatic.

What Happened to me: My Hands Forced it upon me!

I couldn’t make this story up if I tried: can you believe that my awakening started at a crystal workshop for kids?! I took Hana to one for her birthday celebration, it was our  precious time together as we both find crystals soooo pretty and we wanted to know more about their healing properties.

After being asked to sense the energy fields of a crystal by raising our hands over them, I felt a sudden pain in the centre of both of my palms. Right in the palm chakra – although I didn’t know this as I had no idea really, what a chakra was OR that there was one in my hands. Once I’d felt the energy radiating into the palms of my hands – the pain wouldn’t stop. In fact the sensation in my hands got more and more intense over the next 36 hours so much so that coming into contact with high-vibrancy things like coffee and turmeric caused so much pain I had to put them down. When it got super intense I had a feeling that something was ‘pouring out’ of my hands that I couldn’t control. I felt an urge to discharge it somehow, to relieve the pain, but I seriously did not have a clue how or why the hell this was happening to me. Can you imagine how confused  and shocked I was? Nevertheless I was curious to find out more.

Up until that point in time I believed in the existence of course of ‘energy’ but not I did not believe that intelligent energetic life forms could exist separate to our bodies. I had made myself at peace with the concept of my consciousness being annihilated at the point of my death. I was not spiritual nor a seeker of spirituality. (But, might I sneak in, I was highly principled and I was quite content with my beliefs). However the pain and nagging sensation in my hands was so strong I simply COULD NOT ignore it. I found myself having to violently flap my hands around when the charge built up to cope with the pain! I looked like a total weirdo. It even continued into my dreams at night and the feeling of ‘charge’ would build up so much it would wake me up. I had no choice to look into ways to control these sensations and so became (OK, I’ll admit, reluctantly) aware that a ‘bigger’ picture may well exist beyond my physical body. I had been wrong. Wrong. Wrong again! I began to look for someone to teach me.

The Kundalini Awakening

A few days later, after finding an Energy Tutor and starting some exercises in ‘energy’ or ‘energy work,’I felt a powerful urge to meditate. By the way, traditionally, Nurse Naomi DOES NOT meditate: she runs, she swims or cycles. Or writes. She DOES NOT meditate. This has now changed – but the urge that day to do this meditation was so strong that I rushed home after school drop off to do it. For an hour I meditated but I had intense seizure-like shaking that with hindsight, I can now see fully actualised the awakening. Every time I thought the shaking had petered out and would stop, another wave would overtake me. I was a bit annoyed by it as I felt it was stopping me from going really deep into meditation.

During the meditation and intense shaking I was aware that there was a being with me – I sensed that they were concerned that I would be concerned by the shaking. I felt this presence in my mind but also as a burning sensation on my right hand, radiating up my arm. During that meditation I truly let go of my prior belief system, so there is more than this…! I had been so sure there wasn’t… I asked ‘the universe’ to show me what I needed to know. You guys all know that I’ve been letting go of the ‘old me’ over the past two years as I’ve been forced to re-evaluate everything I thought I knew. Well this was the last step – I don’t really feel there is much of the old me left… At the end of the meditation I felt terribly sad and I found myself in floods of tears.  It had taken so much suffering for me to get to this point! For all that darkness to have been what I had needed to ‘wake up’, why? I found myself asking this being that was with me, why does it have to be so hard? There was no response but a feeling of pained empathy.

After that meditation I was extremely cold for a few hours even though it was a hot summer’s day and the air con was off, I sat wrapped in a blanket. I felt smashed and drained, like I’d been hit by a truck, my whole understanding – of everything – had been turned upside down. But then something amazing happened!

Within a 24 hour period a tremendous sense of peace rained down on me.  I’ve told you that peace was beginning to find me in Can you ever be at Peace while your Child Suffers? – but after this day, the peace that found me was more powerful than anything I could have previously imagined or dreamed of!

Earth Image

Why are we here? What did we come here to accomplish? I love these questions and have started finding out the answers! How about you? Do you know why you are here?

So what does this have to do with it?

This Spiritual Awakening has transformed not only my belief system but has also transformed  my entire understanding of what I am and what I doing here.

I don’t believe it was a coincidence that the work of Dr Brian Weiss was introduced to me that very week. This is a U.S based, prestigious psychiatrist who was forced to confront his prior agnostic belief system when he found that under hypnosis his patient went back into past lives with incredible details and access to information (about him) they simply couldn’t have known. This led to his own ‘awakening’ and since then he has written many books on Past Life Regression Hypnosis and I URGE you to read his work – it has blown my mind in ways I thought it would never go. LISTEN TO WHAT PEOPLE ARE SAYING! I simply cannot ignore what thousands and thousands of people have told Dr Weiss under hypnosis and I have embraced their stories and his insight to the spiritual dimension as truth – for me, their truths resonate deep within.

What I love about this Spirituality is that it knows no boundaries – there is no ‘right way’ or ‘wrong way’ to achieve spiritual purity – there is no reason it cannot embrace all religious perspectives for it perceives that the end result of all our soul journeys is supposed to be simply LOVE. No doctrine, no dogma, no complicated theory…just love.

Reiki/ Hands on Energy Healer

My hands led me to my awakening, without the intense pain I felt with the activated hand chakras I wouldn’t be sitting here writing the blog post I wouldn’t have ever imagined writing Not. In. My. Wildest. Dreams. It was kind of a no-brainer that I felt I needed to train to become a reiki energy healer, which I have started…

So there will be another blog post on that soon. Becoming a Reiki Healer, and I hope, Reiki Master one day, isn’t an end though, it’s another part of my journey as I continue to Unlearn all that I’ve Learnt. I’m so honoured that you are sharing this with me. Thank you! Thank you for reading and for sharing – if you feel compelled. And please get in touch and share your own experiences and thoughts – whether you feel you are ‘awake’ or not it doesn’t matter! I want to hear from you all xx

 

 

 

Is Truth what Science says it is? Or what People say it is?

Mind Journey

If this beautiful image is yours, please claim it so I can officially credit you

What is truth? Is it what Science dictates or is it what people are saying? If something is a truth to you, would you change your belief if science discredited it?

I have always valued my education and striven to constantly expand my knowledge base. However I want to share with you where my carefully assimilated knowledge base went wrong. With the accumulation of knowledge came accumulated confidence that I knew. But, as I have learnt, there is a huge difference in knowing about things and knowing things.

Take homeopathy for example, “How could it possibly work?” I wrinkled my nose at the pharmacist who suggested I try it for a cold. “Does it really work?” I persisted, watching his face carefully for a reaction. “Many people say it does.” He said, honestly. Ahh, what the hell, I thought, and purchased a pack.

Later that day was my second ever experience with Homeopathy – because I now know that I was taking the wrong remedy at the wrong frequency  – I had a ‘proving’ to the Belladonna component. After repeating doses as the pack instructed me to I developed a rapid heart rate and very dry mouth. I was amused by this, because as far as my masters of nursing and previous modules in Human Biology had formed my scientific mind, homeopathy just didn’t make sense.

I don’t understand how it can work, therefore it probably doesn’t work – was my mindset. How awfully, awfully arrogant. And this is the mindset of many people with regards to not only homeopathy but also other alternative approaches to health and wellness.

Science is good, but limited

I’ve always loved science, I find it fascinating. However as you know from this post: Closed Minded Science, what it is and why it really, really sucks I’m very disillusioned with my own experience of scientific minds. The science I’ve met is the antithesis to the science I’d expected.

Exploring concepts to prove or disprove them is awesome. However I believe we need to be really cautious before saying or believing “science has officially proven/disproven”. Everything occurs within a context, that includes inference of results and understanding of ‘truths’. We are all familiar with the chopping and changing of scientific truths, fat is bad, fat is good, fat is OK BUT…Yet many of us are still suckers for media headlines that play this tug of war with our belief systems. Science is good, but we mustn’t forget that understanding is limited to context and current understanding, in the same way we used to think the sun revolved around us, it made perfect scientific sense within belief systems back then. And don’t forget tragic disasters like Thalidomide.

Listen HanaLISTEN

Oh Hana, I’m so grateful that you’ve taught me this. Having stood face to face with the limitations of science in my pursuit for help I’ve had to learn to step back from my accumulated knowledge, my scientific instinct and learnt to LISTEN to what people are saying:

If thousands of people are saying homeopathy works for them, for their children and their animals, how can we ignore that? Or if people are saying they react to Gluten? By falling for a media headline that says “scientist still says homeopathy doesn’t work”or “gluten intolerance doesn’t exist” what are we doing to our greater ‘world family’? We are discrediting their genuine experiences – in the thousands, or more – for the opinions or interpretations of a single body of professionals!

The same goes for Prayer! Thousands of people say that prayer works/has worked for them – to similarly say but this isn’t proven by science therefore it can’t be true would discredit a religious experience. Although I do recall there being some scientific basis to ‘prayer’ being proven to work in certain cases (i.e the ones actively tested) – but you get my gist. 

Don’t KNOW. Listen.

Science is awesome, science is brilliant but it is NOT the comprehensive guide to truth. It changes, it evolves, it is transitory. People have so much to say, we could all learn so much more about the world and about WHO WE ARE if we could simply learn to LISTEN, more than we claim to KNOW.

Thanks for stopping by, as you’ll read in the About Me section I’m not really your average Nurse! I’m on a lifelong journey and quest to unlearn where I need to and learn where I can, sharing it all along the way. If you liked what you just read or if it resonated within you, why not share this post? And please check in with me on Facebook or leave a comment below as I’d love to hear from you. 

 

 

 

 

Can You ever be at Peace while your Child Suffers?

Over the past two years I have witnessed a suffering in Hana so deep I found it incompatible with breathing. How could I draw in another breath? How could the world keep spinning and life continue to unfold when my daughter was being tortured in front of my own eyes?  I wished life would hurry up and pass me by and I truly felt that when it came, death would be great release. I imagined how it would feel to be free of the agony I carried in my heart every day, watching her suffer. I imagined the bliss being able to float out of my body that hurt me beyond my imagination – watching my child suffer was worse than anything that could be inflicted upon me alone, I’m sure every parent reading will understand this.

I talk about death, but I was not suicidal in any way and not depressed either. You might be surprised that I haven’t been depressed over the last two years, torment isn’t the same as depression. I was still filled with awe at the beauty of the world and was still hit with unexplained feelings of joy or ecstasy from time to time. My days weren’t endlessly grey without hope but blue-black, or red hot with intense emotion, the gut wrenchingly bad and sometimes the passionate good. But when the days were particularly dark I would look at the evening stars with longing and I embraced a growing sentiment that death wouldn’t be such a bad thing after all, when it was ready to take  me, I would go willingly.

I wrestled for two years – fighting  – to restore health and wellbeing to Hana and I knew that I would not be at peace until I had 1. Achieved and succeeded, or if that didn’t work: 2. Died. I would fight until the day I died for her. I asked myself the question, will I ever be at peace again? Can a parent ever have peace when their child is suffering?

Rage against light

How could a parent ever be at peace when their child is being tortured in front of their eyes every single day, day after day after day, incurable, no end in sight until death? The hunger, the bodily pains that flitted from one body part to another, the headaches, the ongoing terrible headaches, the heaviness at having to carry three times her natural body weight, the hunger, the cancer, the anxiety, the constant fits of crying, a stolen childhood…

There was no peace for me. There would be no peace for me. For Hana  I would endlessly ‘Rage against the dying of the (her) light,’ – I would not let her ‘go gently…’ either (*Dylan Thomas*), I was a warrior, for her. The only way to live with that suffering was to fight it, to try and kill it, to hope, to re-create happiness and to there find peace.

And I was close to that – I managed two medical world firsts in 12 months, facilitated treatment options her doctors weren’t aware of, brought about weight stabilisation with the lap band and started an intensive, exciting journey to brain healing. I travelled the world.  I would do this, I would cure my daughter and then I could be at peace again. Hana was doing very well after her lap band and Dr Kahn’s laser therapy – I was winning! We were going to move house and buy a place in the country, we cut off our hair, symbolic of renewal, new school, new beginning. I was so sure things would go my way because I had created this new future myself, with blood (Hana’s), sweat (mine) and tears (our collective contribution). I thought 2016 would hold peace for me, and I knew I had earnt it.

By the end of the first week of January I realised how utterly foolish and wrong I had been. My fragile world disintegrated around me like sand falling through my hands:

Hana began gaining a kilo a week – out of the blue &

the Tumour was back.

What now? I wanted to curl up in a ball, weep and never stop. This was too much too bear.

The creeping, suffocating darkness returned to our days, my husband and I sleeping fitfully, sick to our stomachs, unable to look each other in the eye simply because our eyes communicated too much pain. The oppressive heaviness,  dread, that goes hand in hand with  4 a.m starts when restless sleep ebbs away to days that only held fear in store. Fear that coiled in the stomach like a snake. Frightened, whispered snatches of conversation in the bathroom as I updated him on the weight gain, or we discuss the inevitable fallout of radiation on her delicate brain or the scar tissue from another invasive surgery. And we grimly envisaged what her future had in store: Her future to which we had to be helpless bystanders.

We began to work through our options, intense research once again, then made our tentative plans and started Hana on Metformin for her weight. The chaotic start to the year calmed once we decided we would take our time with our decision and a little dust began to settle. But I wistfully yearned for the peace that I thought I had earnt, why did life have to be in turmoil again? Why couldn’t I be allowed to love each second of my life as I used to when my daughter wasn’t suffering? I desperately wanted to be joyful, peaceful and carefree every day and I couldn’t ever be those unless Hana was well. Surely I deserved more than this, after the mammoth effort I’d put in to ‘making things ok again.’

Then something strange began to happen.

For some reason I was slowly becoming aware that I did not carry any negative feelings or habour hatred towards Hana’s illness, and as you know from this post (Love yourself and that includes your cancer) I was teaching this to her too.  I was curious to realise that I no longer hated that this life had chosen us and I stopped feeling the downwards pull when I observed the simple, happy go lucky lives of those around me. As the negative feelings slipped away I began to feel  glad I’d been moulded by the past two years and felt genuine gratitude for having the chance to change and develop as a person. I also realised I was no longer looking at old photos of Hana pre-tumour diagnosis with heart break and a terrible longing for the past. That was then and this is now. Would you go back and be the person you used to be? No…I actually like who I’ve been forced to become. As I became aware that my feelings towards our situation were radically shifting,  with that change of outlook something else was happening too: peace was beginning to find me.

But, one great difficultly still remained, I just couldn’t see how, on a practical daily level I could reconcile my daily dealings with Hana’s suffering, to come face to face with it in it’s rawest form – tears and terrible pain – and NOT SUFFER with her? Practically speaking this seemed impossible, her suffering caused physical, biochemical reactions in me that I could not control. How could I not hurt and suffer with her for as long as she suffered?

I was carrying these thoughts for a few weeks until, a short while ago I was dramatically forced into realising what else I needed to do.

‘Open your mind &

Listen to what people are saying.’

This is my ongoing lesson, something Hana has taught me consistently over the past two years LISTEN to what people are saying. Listen…The overwhelming turnaround has been incredibly dramatic and completely life changing. I have a lot to share with you!

I will end with the beautiful ‘Namaste’ – ‘I see the light in you’ – and look forward to sharing more with you, when the timing is right.

NN x

The journey has just begun…share it with me by looking through my old blog posts and check in with me on the Facebook. Thanks for reading and please do share this post if you feel the intuitive pull to, there are so many people I’d love to connect with. 

 

 

 

 

Closed Minded Science – What it is and Why it really, REALLY sucks

I moved Science

When I say I studied Philosophy as an undergrad people think I spent all day eating toast, sitting around contemplating the meaning of life. I admit, I did do that a bit, but I knew deep down that all this thinking would help me kick ass at some point in my life. To be fair, it helps me kick ass in pretty much all mundane arguments with my husband, just ask him. There’s nothing like putting words into quantifiers – quantificational logic, that is, – to help you pull apart everything anyone else says. But back to the point: The educational blend of Philosopher and Nurse has helped me kick ass in getting treatment for Hana over the past year. The Nurse in me understands the medical implications and  terminology as I scour the research and the Philosopher in me keeps asking, relentlessly: Why…Why Not? Why…Why friggin Not? And: What If..?

Now I see many parallels between my philosophical approach to finding ways to help Hana to that of a scientist. This is what I thought science was all about:

  • The pursuit of understanding.
  • The discovery of truths and a realisation that understanding – even at it’s best – has the ability to transform and mould accepted ‘truths’!
  •  An acknowledgment that at any point in time, an accepted truth can change with another discovery.
  • A scientific mind is always open. Never, ever closed.

Yet when it comes to my experience as Nurse turned Consumer with fellow health care professionals  – many of whom would claim they have a scientific mind even if they aren’t outright scientists involved in research – I have been confused and saddened to see that on the whole, my understanding of science is not one that is shared by your average 21st Century medical and health care professional.

How (I think) a Scientific Mind Should Reason:

  1. I don’t know everything there is to know about this, therefore I will keep an open mind on how to tackle it.
  2. The sky is the limit, never say never. (How convinced were we that the earth was flat? That the sun revolved around us?).
  3. Truth is relative (to our understanding) and scientific truths change with not only what is discovered and understood, but is also limited by the incorporation of these truths into accepted spheres of knowledge. This in itself is limited by what is published and then, with what is actually dissemeintated to medical practitioners and the general public.
  4. The more I know, the more I know the less I know.
  5. I don’t stop asking questions.
  6. I search for and create meaning by discovering truths.

How (some) ‘Scientific’ Minds (that I have encountered) Reason:

  1. I don’t know everything there is to know about this – but I know a bit and therefore my mind is made up. (I know all I need to know and I’m sceptical about anything I don’t know or know nothing about).
  2. Truth is what I’m telling you. I don’t always get around to reading the latest publications but I’m experienced and well recognised. Trust me and do what I say.
  3. The more I know the more I know I know.
  4. I rarely ask questions because I already know the answers.
  5. I follow the well trodden path.
  6. If there is no proven cure, there is no point in looking for a cure.

How Closed Minded Science Ridicules what Others have to Say:

The problem – closed minded science – is a much greater problem than my experience as Nurse turned Consumer over the past year. I see this closed mindedness permeating my Facebook feed as articles from science blogs, medical newsletters emanating the same ‘closed by what I know’ vibe, “science has disproved that” or “science has proven this” as a means to ridicule or rule out what others may be saying about something. Gluten sensitivity came up today – “Unless you have cealiacs disease you aren’t sensitive to gluten -scientists say.” Not sure how to tell my non-cealiac husband that he better stop getting violent reactions from Gluten then. What the hell is wrong with saying “This phenomena exists, but we just have no fricken idea what it means yet? We still don’t understand it.” The problem of course isn’t science itself, it’s our ridiculous application of it – (‘it’, in the form of studies, often single, always limited, sometimes of an inappropriate structure  to what it is testing AND whether it happens to get media/social media attention) that foster a rigid, closed mind rather than opening it.

I’m thoroughly disappointed by the scientific closed mindedness I have encountered in my quest to ultimately, save my daughter’s life. I had thought more of 21st Century approaches to scientific problems. I had expected more passion, more curiosity, more courage to tackle, explore and discover ways to solve this apparently un-solvable problem, this untreatable condition. Instead my husband and I led a two man crusade for a long, long while, fruitlessly challenging the rigidity of  scientific minds that were so closed by the science they knew, they couldn’t, for a moment, entertain any notion of a science they didn’t or a science they hadn’t yet encountered.

And that’s a truth.

If this is your first time here, thank you for stopping by! There is more on my journey as Nurse turned Consumer under Brain Tumour. Please stop by my Facebook page to say hi. If you are a regular reader, thank you, and I love you!

Hana’s Brain Tumour Regrowth: The Action Plan

Hana Tumour 2016How to make a decision on your child’s health when 1. You don’t like any of your options 2. You know that whatever you chose, the fallout will most likely impact upon your child for the rest of their lives?

After the devastating fallout from Hana’s first surgery to remove her tumour my husband and I have taken our sweet time to decide on the best course of action this time round. Luckily, the medical professionals we have consulted with regards to her treatment have supported us in this. We will not be rushed, or hurried this time round and thankfully Hana’s tumour is small enough to allow this, unlike last time.

Our aims are to:  Minimise any further damage to ANY part of her brain, and, only take action if action is needed.

We have been intensively researching treatment options of all types, from conventional and mainstream to newly emerging non-tested treatments to the alternative. I have also lost count of the professional input we’ve had from neurosurgeons, oncologists and radiation oncologists around the world. Together with these opinions, our accumulated evidence base (in the form of studies, articles and book chapters) we have put together a plan.

We have come across molecular targeted radiation for tumours, ultrasound and some other newly emerging treatments however the biggest bulk of ‘evidence’ available occurs within the realms of surgery and radiation.

Let’s look at the two main treatment options available for Hana’s type of tumour:

Radiation Oncol AppointmentRadiation

Hana’s first neurosurgeon recommended radiation for this regrowth, and his opinion was supported by every radiation-oncologist that we contacted for input. Along with surgery (and chemotherapy for malignant cancers), radiation is one of the main treatments available for cancer.

How does it work?

Radiation, in the form of X-rays, is sent through the brain, through the tumour and back out of the brain. The rays pass repeatedly through, all meeting at the point or area of the tumour, so it is this point that gets the highest amount of radiation. However, even though this radiation is more intense at the site of the cancer, a large area of other brain tissue is also irradiated as the rays must enter and exit the brain in multiple locations. Available here in Australia is Gamma Knife and Stereotactic Radiation.

Proton Beam radiation is slightly different to conventional radiation in that the protons enter the brain, reach their maximal strength at the site of the tumour before pretty much being exhausted, preventing a ‘exit’ point from the brain. This is called the Bragg Peak. Proton Beam isn’t available here in Australia although worldwide has been increasingly recognised as something that should be given to children with brain tumours due to the fact less brain tissue is irradiated.

What is the Fallout of Radiation?

Everyone copes with radiation differently and it depends what body part is irradiated. Obviously irradiating the brain is pretty massive and changes can be huge this is especially so for children who are likely to exhibit great neurocognitive changes after radiation.The fallout can occur years after treatment,

High dose radiation is an established carcinogen. Many recipients of radiation to the brain experience future brain tumours years later – some benign, some malignant. We have decided AGAINST radiation – more on why below.

 

Surgery

OK this doesn’t need explaining…but it’s worth mentioning ‘surgical approach’. For Hana’s first tumour she had an open craniotomy – her skull was opened transversely and the surgical tract extending through the frontal lobes, severing the corpus callosum in order to get to the extensive tumour (which infiltrated the optic chiasm, third ventricle, pituitary, hypothalamus all the way down to the pons area in the brain stem). This is enormous surgery and as you know the collateral damage was massive.

This time round we have had a surgeon propose the supraorbital approach, this means going in above the eyebrow, under the frontal lobe down to the pituitary area. This approach should affect less brain tissue than the previous however carries risks of damaging the optic nerves and senses of smell. Obviously if the frontal lobe was handled it could also be damaged. Then there are the usual risks of surgery – death, stroke, meningitis and the lot.

Anti-Cancer Regime

I don’t think we really have long enough between scans to properly initiate a powerful anti-cancer regime and allow it to have an impact but nevertheless I did quickly put together some well known anti-cancer supplements and healing regimes that I hope will help in the long run even if this time round the tumour can’t be halted in it’s tracks, here is a non-exhaustive list:

Energy Healing

We have started Energy healing – this is a HUGE topic and there is no room to go into it here so I’ll save it for another blog post…All I can say is, WOW.

Supplements 

Tumeric (as Theracumin – whole turmeric is a bit too high in phenols for her)

Vitamin C

Activated B’s

Magnesium orally and as daily Epsom Salt baths

Co Q 10 (she takes Ubiquinol)

K2 and Vitamin D

Selenium

NAC (n-aceytl-cysteine), which is the precursor to Glutathione

Frankincense Oil: I use the highest grade oil I can find by Doterra (which doesn’t come cheap at $150 for the teeny bottle). According the input I’ve had and research I’ve accessed Frankincense is one of the few oils that can be taken internally and there is a growing body of research suggesting it has strong anti-cancer properties. However, until more is known on the systemic effects of oral consumption of this oil I am sticking to topical applications (on the temples and cranium) and using an oil burner. SHe will absorb at least some of it this way through her skin and lungs.

Homeopathic Banerji Protocol: I’ve had some fellow alternative health care practitioners get very excited about this unusual use of potentised remedies in brain tumour treatments. However I’m gutted to observe that Hana feels very unwell on this regime. The naturopath overseeing this has given us some remedies to help her cope with side effects but the impact on the regime on immediate quality of life has made it very hard to stick with. So at the moment she is getting intermittent doses which won’t work to their best ability, I know.

Ketogenic Diet: As sugar fuels inflammatory insulin we keep Hana on a very low carb, keto diet. Unfortunately, due to her hyperinsulineamia as a result of the hypothalamic damage Hana’s insulin is still high even when she is in ketosis which is extremely frustrating. :-((

 

How this impacts on Brain Healing

One of the major reasons we have decided against radiation time round is related to brain healing. We are continuing to treat Hana with low level laser therapy to help facilitate brain healing and I simply can’t see how radiation and using laser for healing can possibly go hand in hand, the laser would surely be mitigating the effects of the radiation. The whole point of radiation is to slow down and kill cellular growth (this impacts healthy as well as diseased tissue) – often over a period of years. Whereas laser stimulates cellular renewal! How could we subject Hana to weeks of radiation, in the aim of it slowing down cellular growth whilst at the same time stimulating it with laser!

Whereas if we opt for a surgical approach we can use the laser almost immediately post op to help reduce pain, swelling, inflammation and risk of infection before continuing our brain healing regime in the weeks, months and years that follow.

Countdown to next MRI…

Hana will have another MRI in a few weeks to assess growth. If the tumour is stable we won’t act. If it has grown then we will opt for surgery and facilitate healing with Low level laser therapy before continuing on her anti-cancer regime (which will expand as the months go on and my research increases!).

Thanks for stopping by and for catching up with the latest. Lots more posts lined up for the near future so keep looking out! Remember to check in with me on my Facebook page, I really love to ‘meet’ my readers there. 

 

 

 

 

 

 

“Love Yourself, and that includes your Cancer.” – Why our Daughter is NOT Fighting Cancer

IMG_4963The words slip out automatically – ‘We have another battle on our hands,’ ‘We’re going to fight this together.’ It’s the cancer lingo,  jargon everyone uses to talk about cancer. The implication that Cancer is the foreign body, the enemy inside, something to be battled, fought, rallied against and…hated.

Hated?

I’ve used these words with Hana, in front of Hana, for Hana. She’s heard the lingo: ‘Good job you’re a fighter sweetie!’ people say. And it’s true, she battles daily for anything resembling a ‘normal’ existence. And it’s true that when we appear to conquer one aspect of her morbidities, something else crops up for us to push for, fight for, fight against, rally our resources. Life is a battle for the whole family unit.

Somewhere deep inside over the past two years I’ve had an itch about the using the words ‘fighting cancer,’ in front of Hana but I didn’t know what the itch was until last week. I want to share that itch with you:

We are on the couch. Hana is hungry.

‘Why am I hungry mum?’

‘I’m not sure baby, you’re not usually hungry for morning tea this early.’ I am just as worried by this as she is.

‘I wish I wasn’t hungry. I don’t like being hungry.’ She begins to cry.

‘Oh sweetie,’ I pull her to me. ‘I know. I don’t like you being hungry too, it’s awful for you.’

The powerlessness I feel against this God awful condition is overwhelming. Why can’t I make this right?

She begins to sob loudly out of sheer frustration. She has tried so hard to overcome this; the youngest child with hypothalamic obesity in the world to get a lap band, keeping busy, the no-carb ketogenic diet, painful injections, horrid medication, keeping busy again. But still, sometimes she gets hungry earlier than morning tea and that ache in her belly brings back dark, dark memories of 18 months of endless hunger and suffering.

‘It’s not your fault sweetie,’ My eyes are filled with tears. ‘It’s not your fault. This is your condition, because you have a brain tumour-‘

‘I know,’ She mouths the words, barely about to speak from crying. But then she blurts out loudly, loud enough to shock Maryam who crawls next to me, a little frightened mouse.

‘I WISH I DIDN’T HAVE A BRAIN TUMOUR!’

The world stops spinning for a second: Hang on, I won’t have this.

I won’t have my daughter wishing her life was different- even though I am guilty of similar thoughts at times. I can’t have my beautiful girl wishing for a different life from such a young age. No, this is not helpful or healthy for her. I need to change this, now.

I stroke her forehead, carefully thinking how to phrase this to turn things around.

‘But you do.’ I say quietly. ‘And this is your body…this is your tumour, this is who you are. This tumour is part of you, baby girl.’

I don’t have to explain any further because she instantly understands what I am saying: Love yourself, cherish yourself, and that includes your cancer.

‘I know,’ her words are heartbroken but I can hear they are accepting, the tears spilling are sad, not enraged. She intuitively cherishes and respects herself too much to be filled with ‘hate’ at the cancer inside. In the same way she accepts and loves her ballooning belly, ‘tummy,’ who she talks to and giggles with (I’m ‘tummy’s’ voice). She hasn’t learnt self-hatred yet, and I’m not about to let her – or teach it to her.

I will not have my daughter filled with hate for an invisible enemy stuck inside her body that she is unable to control and feels she must fight because this is expected of her. Words are powerful. 

She begins to calm down and I continue to speak quietly,

‘Your cancer is your body saying “Hello Hana! Something’s not quite right in here and that’s why I’m growing like this!” and together we will try and figure out what it is. It’s not your fault, it’s not your body’s fault and it’s not your cancer’s fault.’

My understanding of cancer has changed since embarking on my journey into Integrative Medicine and Homeopathy. Cancer is seen as the by-product of some sort of systemic “dis-ease” throwing the bodily system into chaos. Surgery, chemo and radiation may remove the cancer, for a while, but the ‘invisible’ cause usually remains unaddressed and so the cancer returns. I particularly love the homeopathic perspective on symptoms that view any symptom as the body behaving in the best possible way it can – under the circumstances. Hana’s cancer is her body reacting in the best possible way it can – under the circumstances. How I can seek to change those circumstances however may well be my life-long project, along with healing her brain.

She nods, tears beginning to dry up while Maryam’s have started, sharing Hana’s suffering. I hold Maryam still and encourage her cry out her the terrible ache inside while Hana pulls herself together, sits up straight beside me and strokes her sister. This is about love, not hate. We love Hana, Hana must love herself and this love must include her cancer, I just can’t see how she could ever heal or hope to be cancer-free if she started carrying around a hatred at such a young age. She must love and respect herself and honour her body for ‘doing the best it can – under the circumstances’ and we must too.

And so there is no speak of ‘war,’ ‘battles’ or ‘fighting cancer’ in our house. Instead we speak of action plans, we feel (and sometimes actively seek) gratitude and we love. And I hope that one day I will be lucky enough to address the root cause for Hana’s cancer, but even if I am, she will still be left with the fallout and so acceptance, and a love for the life she has and we share, is what we try and model.

Hey there! Thanks for stopping by, there is more on my two year long journey with Hana’s diagnosis under Brain Tumour. If this is your first time here why not read ‘About Me’ to see what I’m about – then like my Facebook page if you think you’d be interested in following my journey, I’d love to hear from you.

 

 

 

How I told my Little Girl her Cancer was Back

image

The new Smiggle school bags

I pride myself in how I describe medical procedures to my kids. I can make them sound almost fun – like MRI’s, for example. I recorded the sounds of the play therapy MRI machine and then proceeded to make up this dance to the whoosh-whoosh, beeps, bangs and booms. It’s something like techno-crossed with robot moves with a dash of heavy metal head banging thrown in for good measure. I call it the “MRI Dance.” I find it  hilarious and so do my girls, except that for some reason Hana won’t let me do it in the room while she’s having her scans. I think perhaps she’s beginning to get embarrassed by me now.

When it came down to telling Hana that she had a brain tumour two years ago, I also think I did an excellent job. “You have something in your head that shouldn’t be there called a brain tumour – but it’s OK, you will have a operation to take it out and then your headaches will go away.” And then I made up a song about her going to sleep and waking up with the headaches all gone and she pretty much took the whole thing in her stride.

So what about two weeks ago when I found out the cancer was back? I bet you’re expecting that I did a great job of it, right? Made up a song and dance about it? No. Unfortunately this time I did a crap job of breaking the news, this time I just didn’t have it in me to pretend it was O.K.

Hana has had headaches daily since her initial surgery, so we live with these. But whenever a scan is approaching I get ‘scanxiety’ that, this time, the headache is due to tumour regrowth. Hana would complain of a ‘really baaaaad headache, muuuum,’ and I’d go ‘hmmm, let’s hurry up and get that MRI hey?’ So I was already unintentionally planting seeds, in her mind that the severity of her headache could be due to tumour regrowth. Is that a good or bad thing to do? As a mum should I be protecting her from that, keeping my fears to myself or should I be sharing them with her? It’s a fine balance between being realistic with her about the life-long risk she has of tumour regrowing versus protecting her fragile, innocent little head and allowing her to live something resembling ‘normal’ in-between.

‘Has she had surgery before?’ The radiographer asked, popping back into the MRI room to get Hana ready for the Contrast injection. ‘Oh yeah, she’s had enormous surgery,’ I explained, ‘She had a brain tumour.’ She nodded, ‘Was it over the pituitary?’ ‘Yep,’ I said, now suspicious, very suspicious. What hell has she found above the pituitary? I exhaled. The results couldn’t come fast enough.

Two days later the results were sitting on Hana’s neurosurgeon’s  desk, the receptionist told me she had the results and that he would look at them today and then she would call with the action plan.

‘Action plan?’ I relayed to my husband over the phone, ‘What action plan? The plan was that he’d call us with the results because if it’s clear, he said we won’t have to go in again!’ I kept myself busy all morning, itching to do the 45 minute drive to the hospital to look at the results myself.

That afternoon I took the girls out for a walk, we popped into Smiggles and they chose the fluffy blue tiger face school bag they both wanted for school this year. In their new school there is no uniform and they are ecstatic that they can have a fluffy blue tiger face backpack. We were all so excited about starting this new school, it was going to be a new start, in a new leafy area and we would be moving to the edge of the Bush (in pursuit of brain healing, health and wellness). It was going to be a new beginning for us all.

My phone rang on the walk back. I’d put it in my back pocket so I would feel it vibrate if it rang. There was no way I could miss a call when MRI results were due.

‘It’s about your MRI,’ I hushed the girls as I quickly answered it. They silenced quickly, used to important phone calls. The only sounds left were the cars racing down the road and the gaggle of international students, mostly Brazilian, leaving their english classes for the day.

I held my breath. Please please please please be clear.

‘Hi it’s Kate,’ the receptionist said.

I don’t like that…that’s not a good start, surely she can’t give us the all-clear over the phone? He said he’d call us…

‘Dr *** would like you to come in tomorrow to discuss the scan.’

My stomach flopped and my legs instantly went weak. Before I got to ask why she continued, ‘Because, yeah, they found something in the scan.’

So it’s back.

It’s come back after only two years and after paying a enormous price for the aggressive surgery that was supposed to reduce the chances of it reoccurring. Severe hypothalamic obesity, life-long, life-threatening obesity for only two years without cancer??? I dimly make arrangements to come the next day, my world beginning to slip away from around me. The future with the blue fluffy school bags, a house on the edge of the bush, health and wellness, brain healing, they were all beginning to spin and spiral away from me, sucked up to the sky, out of my reach. The happy things I thought we could have, the happy things I felt like I’d earnt. And the sickening feeling of despair and despair’s twin sister – stone cold loneliness – began to descend. No amount of Australian sunlight can brighten up the darkness these siblings bring.

I hung up. I couldn’t make this look bright. I couldn’t make light of it. I couldn’t pretend even that this was going to be OK right then. Everything was being snatched away from us just when we were so close to having a better life. Both girls looked at me, Hana her worry showing already; she’s developing the art of reading my phone calls.

‘What mum?’ she asked, uplifting her beautiful little round face, blue eyes reflecting her concern.

‘I’m sorry baby.’ I drew her to me, my mouth and face twisted with the bitterness at having to tell her. ‘I’m so sorry. But they found something on your MRI.’

‘Found what mum?’

‘Well… your tumour might have come back.’

Then her face screwed up, ‘But I don’t want my brain tumour back,’ she began to cry instantly. And I knew that I’d messed up. Totally screwed up how I’d conveyed this to her. I should have played it down, should have said in a light, funny voice ‘Mmm they’ve spotted something in your scan – we better head in tomorrow to make sure it’s not a sneaky cashew nut hiding in your brain (because you eat so many of them, hahaha).’

‘Look,’ I squeeze her tight, trying to make up for revealing my sadness, ‘We’re going in tomorrow to see what it is. It might not be anything we need to worry about-‘ Oh dear God it was too late for that. Why hadn’t I just thought before I’d said ‘I’m so sorry?’ of all the stupid ways to break bad news to an eight year old, you don’t say ‘I’m so sorry baby.’ Stupid. Stupid.

And then Maryam started bawling loudly, ‘But tomorrow is horse riding!’ She’d been looking forward to that all week and now she’d have to miss out, again, because of yet another medical appointment. ‘It’s ok sweetie, I know.’ My heart now aching for her and the life she’d had to live because of her sick sister.  ‘We’ll make horse riding another day.’ Then I add, ‘Don’t worry about Hana sweetie, she is going to be fine.’ It was typical of Maryam to hide her fears for her sister  by pretending she was upset about something else.

‘I’m NOT worried about Hana,’ she yells and bawling even more loudly, ‘I just want to go h-h-HORSE riding!’

Both girls were sobbing as we waited at the traffic lights, my useless, helpless arms around them both. A couple of women were at the crossing next to us, glancing over  and I felt the disconnection return. I’d felt this sense of disconnection for over a year and a half  after Hana’s surgery, a feeling that we existed on a different plane to everyone else around us. A bubble of suffering that set us apart. After the lap band I’d finally felt myself re-integrating with human’s around me, making eye contact on the street, caring about people that I spoke to but already the  disconnection was back, like a switch had been flipped. I avoided eye contact with them. I’m not like you. My world has been turned upside down again.

‘What WILL happen if my tumour is back?’ Hana wiped away tears, trying to be brave as we walked the last one hundred metres home.

‘I don’t know yet, but maybe radiation baby,’ I said.

‘But I don’t want to miss any school!’ She protested loudly, ‘I will do radiation but maybe in one year, or in two years after I’ve gone to school for a while-‘ She burst into a fresh fit of sobs. I scooped tear-soaked Maryam into one arm and placed the other around Hana’s shoulders: The Comforter. All I wanted to do was collapse on the ground and wail with them.

My phone went again in the lobby, it was my husband who had been trying to chase up the scan results that morning:

‘I haven’t had chance-‘ He began,

‘-Habibi,’

‘-To ring yet, lunch was-‘

‘Habibi!’ I said louder this time.

‘-so busy and-‘

‘LISTEN!’ I raised my voice almost to the point of shouting and he finally quietened. ‘I’ve spoken to Katie. They have found something on her scan and we need to go in tomorrow.’

Silence.

‘So we’ve got regrowth then?’ He said finally.

‘Yes.’

Silence.

And I’m reminded of that phone call two years ago from the ED:

‘She has a tumour…’ 

‘Tumour’ he relayed flatly, the playground silent, only the wind whistling down the phone and I could hear the expressions on their faces in the silence that followed.

Two weeks on things have been intense as we have conducted our own research into the best possible approach for this. Our dining room table is filled with studies we’ve gleaned from PubMed searches and my iPad is congested with open pages of endless Google searches. We have also been contacting Oncologists, Neurosurgeons and Radiation Oncologists from around the world, reaching out to get as many opinions as possible on the best action plan. What is making things muddy is there is a clear division in opinions on what should be done. It is up to us to amalgamate these opinions ourselves, throw in the research and come to a conclusion we are intuitively happy with –  we are now a little closer to formulating a plan and I’ll keep you posted on that.

Thanks for reading and for sharing our journey, if it’s your first time here you’ll find the rest of Hana’s journey under Brain Tumour meanwhile, check in with me on Facebook if you can, it’ll be nice to ‘meet you.’

%d bloggers like this: