gratitude, health, holistic health, kindness, motivation, positivity, shamanism

The Path of a Shamanic Storyteller

On Sunday night I returned home after the penultimate five day weekend of my shamanic practitioner training.

I graduate in March.

I’m not sure how to even begin to describe what this training has involved, or what it means to me.

I’ve met, and connected with, 5 incredible women who have become like sisters to me. Soul sisters with whom I’m sharing a spiritual path and, whom I hope to continue to share and grow with for many, many years to come.

They know me at such an intimate level. They have seen and witnessed the depths of my soul in a way that is indescribable. At each training weekend we sit in a sacred circle and share with intimate detail the essence of who we are, without fear of judgement and always in receipt of pure and unconditional love and acceptance.

But the training isn’t just about the sharing. It’s also about learning to work in a shamanic manner. ‘Re-learning’ I should say, as we already know…we have just forgotten.

It’s about connecting with something bigger than ourselves, stepping away from the dramas of every day life, being guided by spirit, allowing ourselves permission to learn, to grow and to step onto the true path of our soul.

And, still it’s more.

It’s a coming home. A reconnection. A remembering. Like parts of my soul are reawakening.

Put simply, it’s indescribable. Because there are no words to describe what this path, or this training, is like. Words don’t do it justice. No, this path has to be felt, to be lived.

During this particular weekend I had the honour, and privilege, of my 5 peers, my mentor and another qualified practitioner working on me as a group for 2.5 hours.

Together they held space while I talked through my healing journey and then I embodied my cancer and, for nearly an hour, I spoke it’s story, it’s voice, it’s essence.

In October when I held a ‘cancer divorce ceremony’ I wrote a letter to my cancer. I guess, you can say, this was cancer’s chance to respond.

It was powerful stuff. Pure magic unfolded as words that didn’t belong to me flowed from my mouth.

The words were soft, protective, nourishing even. It seemed the essence of cancer was not there to punish me but to guide and protect me.

I felt overcome with a deep sense of peace, acceptance and surrender.

All fear left me. I felt held. I felt connected. I felt safe. I felt honoured in my wholeness and vulnerability.

Something had shifted in me. Not just physically, but emotionally and spiritually too.

Many people ask how I ended up on this course. It was pure guidance and coincidence. A friend of mine had bought me a one to one shamanic session with, my now dear friend and retreat colleague, Rhonda McCrimmon. That first session blew my mind. I’d never heard of shamanism, the spirit world or any of the other magic Rhonda talked about.

But that’s not why I started training. A few months later (during which I was reading everything I could about shamanism) I found myself at Trew Fields Festival in Surrey (a holistic healing festival for people with cancer). There I kept meeting shamans. Suddenly, I’d gone from never having heard of shamanism to it being everywhere.

I sat in circle with one of them whom some of you will know as Anne (the founder of Cancerucan) and had a profound experience with a spirit snake. Talking to her she suggested that I was already on the path to shamanism and should seek a tutor or mentor.

So, I found myself googling shamanic training during my train journey back to Scotland, the friend I was travelling with (Claire – The Independent Single Mum) encouraging me to ‘send the email’ when I found a practitioner that resonated.

So I did. Then, during my next session with Rhonda it transpired that the person I had emailed was who she had trained with – it appeared I was being guided, once again.

Not only that but my soon to be mentor, Carol Day, and I had actually crossed paths previously while I was studying my PhD…it seemed I’d missed the path’s previous calls to my soul.

I wasn’t really sure what to expect from the course, or even why I was being guided to do it, but, I just ‘knew’ that it was what I had to do. This knowing was deep and unavoidable.

Has the path been easy? No. Without doubt it is one of the hardest things I’ve ever done. But, one thing is for sure, it’s the best decision I’ve ever made for my personal and spiritual growth and development.

To date, I’ve held back in what I’ve shared about the training and the growth I’ve experienced through it, but my guidance now is to open up completely.

Increasingly I am realising that my background as a researcher for the NHS and Scottish Government enables me to be a translator of spirituality into the realms of the every day and even into the scientific areas of life.

So this is where I will position myself, a shamanic storyteller, bridging the guidance of the spirit world into the everyday world and into the lives of those who read my words.

After all, it’s what my writing and talks have been doing for years already, only now, I’ll be more transparent about it.

With love and gratitude always, Fi xx


Be Love

You may have noticed that sometimes when I write, and often when I do public speaking, I channel what needs to be said or what needs to be written.

What, or who, I channel isn’t important I just know that I am being used to get words out into the world. I accept that because it is when I do this that my words have the deepest reactions from and impact with the recipients.

Every morning, as part of my routine and meditation, I ask questions and then I write, free hand, simply letting the words flow.

I wanted to share a piece of what I wrote in my journal yesterday because it felt too important to not share….it is not edited except for the removal or change of names mentioned…

“You need to focus on self-care, on self-love, on self-kindness. You need to focus on you and what your mind, body and soul need. You need to do it in order to heal. You need to laugh more, play more, connect more. Less pressure, more ease. More connection, more joy. Stop pushing people away. Let people in. You are carrying physical blocks in your body where there should only be love. Release the blocks to heal what you are carrying in your lungs and on your heart.

Once you see where the blocks are and how this relates to your life you will see what you have manifested in your physical body around your heart. Let it go. Let people in. Show your vulnerability. When Sapphire (name changed for privacy) phoned you yesterday she showed you what it is to be both strong and vulnerable at the same time. She showed you it is ok to be scared and to cry and that it doesn’t make you weaker. It makes you stronger. Be prepared to let your guard down. Be prepared to open up to the world. Not the facade. Not the act. Not the controlled vulnerability. Open up. Crack yourself open. Release the block. You don’t need it anymore. You don’t need it anymore.

As for your lungs. You are too scared to breath. You are too scared to truly relax. You are too scared to let in the breathing force of life. The prana. What are you scared of dear one? You feel guilt. You feel guilt for how well you are when others are sick. You need to release this guilt. You simply must. You need to release this guilt and this grief that you carry and feel for them. It is not yours to carry. It never was. Let it go. Release the burden now. Give yourself permission. Accept it and release it.

Do you think any of them (names of friends lost to or currently dying from cancer were listed) would be upset if you were well? Do you think I would be upset? No. We just want you to heal and to do well. Don’t compare your path to ours. It’s separate. It is good that you heal. It is needed. It is necessary. You need to release the guilt, the grief, the fear and the anger. Let it go baby girl or you can’t heal and you must heal, you must, not just for you, not just for us, but for the others too. I told you never to give up. I told you. Do you remember. I meant it. I meant what I said. Don’t ever give up.

Connect with others. Release the guilt. Release the fear. Express and be love. You are love. You need to show that to the world. You are being tempted into drama. Do not get involved. Step into love. You are love, it radiates in your cells now. Be love. Be Love. BE LOVE.

Share and show love. Accept love. Accept it into the very core of upper being, into your cells and all will be ok. I promise. it all works out.”

gratitude, health, holistic health, kindness, ovarian cancer, positivity

Today I Rise Again

Today is a new day.

I rose today having felt what I was meant to feel, having seen what I was meant to see, having said what I was meant to say.

So many people ‘advised’ that I stop writing and that I focus on me. I know they meant this with the deepest kindness but writing ’is’ me focusing on me. It is my therapy, my release, my way of processing and feeling everything that is there to be felt.

I do not write for anyone else but myself – although, admittedly, it brings me so much joy to realise how my words have helped so many others.

I can’t help but wonder how different our world would be if someone had told Anne Frank to stop writing. I’m not suggesting I am anything like Anne Frank, a courageous young girl whom I have admired since first discovering her words when I myself too was only young, but I am suggesting that our stories are important, healing and essential. We must share our stories. We simply must.

I feel in a good place today, like I am emerging from something, like I am shedding an old version of myself and stepping forward into something new.

I sense change ahead, yes, but change isn’t necessarily bad and I find myself feeling a sense of excitement at this new adventure I find myself on.

I’ve been in worst places in the past four years since my diagnosis than I find myself in just now. There is, of course, one significant difference now. Now I don’t see chemotherapy as an option for me when the trial completely stops working (which it hasn’t, yet).

As I’ve written many times before, chemotherapy (and any treatment) is a very personal choice and I do not advocate for or against any options. But I do know that chemotherapy is not the right option for me. Not again. Not after 4 years ago. This is my inner guidance and I trust it profusely. Nothing and no one will ever change my mind.

So what are my options?

Just now, medically, it is to stay on the trial. It is to keep breathing in the gratitude that this wonderful cocktail of significantly less toxic drugs is doing something to slow down this disease (even if they can’t stop it completely).

But that is just the medical picture and, if I’ve learnt nothing else on this journey it is that the picture is bigger than what can and can’t be done in a hospital. There is so much more that can be done for my mind, body, spirit and soul.

So, yes, it is accurate when I say I am excited because I find myself wondering ‘what if there is another way?’

And that’s exactly what I intend to spend the next 16 weeks finding out.

Why 16 weeks? Because that is the length of time someone with ovarian cancer is on chemotherapy for…AND, more importantly, because 16 weeks today I plan to get my adventurous soul onto a plane to Bali where I plan to spend 4 weeks healing with my gorgeous husband…something that will only be possible if my lungs stay stable…so I’m excited…I have a focus, I have an aim and I have a shit load of passion.

It ain’t over and, as ever, I ain’t dead yet (motherf*ckers)

health, holistic health, ovarian cancer

The Necessary Grief of the Life Unlived

My cancer markers rose again.

Four months in a row.

Slowly rising, creeping upwards, no longer stable and far from dropping.

It’s not good news.

My treatment is no longer as effective. The trial I fought for is no longer holding things at bay. There is a crack in the dam. The dam is still there, yes, but it’s no longer as effective at holding the tide back from crushing me as it once was.

Was I naive to think that it would keep things at bay longer? Was I overly hopeful?

I thought I was realistic. I thought I had accepted and understood the odds, that I realised how lucky I was that it had worked for as long as it had. Yet my tears tonight tell a different story.

They show the hope that’s been lost, the fear, the anger, the sense of defeat in a battle I never even willingly engaged in.

And while it’s far from over (I am still on the trial treatment and it is still doing ‘something’ even if that isn’t as much as it once was) this rise marks a turn in events.

No longer do I feel like I have the upper hand. No longer do I feel in control. No longer do I feel like I have a grasp on what is coming next.

It’s the fear that hurts the most. The fear of more bad news, of more pain, of less options, of death.

It’s the fear of breaking other people’s hearts, of no longer being able to keep a brave face, of losing my sense of self to this insidious disease.

But most of all it’s the worry that I took the time I had for granted; so busy telling others to live like they are dying that I forgot to do it myself.

I’ve had many great adventures yes but did I love enough, did I laugh enough, did I open my heart to the deep vulnerability necessary for true connection?

I don’t know. But I plan to spend the rest of my days finding out and making sure.

Today marks a change, a shift. Tonight it feels painful. I feel deep sorrow and grief for the life I thought I was ‘supposed’ to have. Tomorrow I will welcome a new day, a new phase, a new beginning.

But, for now, I grieve.

gratitude, health, kindness, motivation, positivity

December Kindness – Day 3

Be There for Someone You Love

It’s day 3 of our December kindness calendar and, today I want to talk about reaching out to those you love who are struggling.

Often someone (or multiple someones) in our life can be in need of help, support and a bit of extra tlc.

But life is busy and our own day to day dramas get in the way of us being there for anyone else.

We find ourselves making excuses like ‘I don’t have time’; ‘I don’t know what to do to help’; or ’I don’t know what to say’ …and so we do nothing, we say nothing, we continue with our lives.

Meanwhile the person who is struggling doesn’t know what our absence means and it only adds to their current situation.

I’ve been on both sides of this…the person avoiding the person in need (before I knew how to be there) and the person being avoided.

Both are shit.

So today is about taking a moment to reach out to that person in your life in a way that is filled with love and kindness.

Here are some ideas that I use when I don’t know what to say or do…

➳ send a message that says ’I don’t know what to say. I don’t know what to do. But I am here. What can I do?’ Trust me…it’s always better to say this than to say nothing.

➳ ask ‘how is your heart?’ This is different from asking ‘how are you?’ …to which the honest answer is usually ‘rubbish’ (or a swearier equivalent) …instead you are letting them know you really care about what’s going on for them.

➳ write them a card or note that says ‘I’m here when you are ready to talk’. There is no pressure for them to be ready now. You are just letting them know you are there when they need you. And trust me, they will take you up on it.

➳ Finally, it can be so easy to say ‘let me know if I can do anything’ but it can feel like an empty offer. Instead suggest something… would you like me to pick up some shopping for you? Walk your dog? Take the kids out? Sit with you? Often people in trauma don’t know what they need. Be the person who is actually there, doing something.

What else has helped you to know you are loved, seen and supported?

With love, gratitude and kindness today and always Fi xx


December Kindness – Day 2

It’s time to spread some more love and kindness in the world.

How did you get on with your first day of December Kindness yesterday?

I loved all the photos and messages I received about the notes you’d left in public places. Thank you!

Today, 2nd December (how did that happen?!), is the second day of kindness in the run up to Christmas and I want to share my favourite FREE random act of kindness.

Today, whenever you are served by someone (in a shop, cafe, restaurant, wherever) look them in the eye and say ‘thank you’ and mean it.

I’ve worked in my fair share of shops, restaurants and cafes (my parents used to own a shop and cafe) and I know that while so many people say thank you, it is often while looking at their wallet or purse while they count out money or dig around for the right bank card, or, worse still, it is thrown over their shoulder as they walk away from the till.

But when someone looks you in the eye, sees you as a person and says thank you …wow, you really notice it.

So be that person!

You will be amazed by the response – which is usually surprise quickly followed by gratitude.

Also, if you need any extra motivation…serving staff are working extra hard in December, there are more staff parties, more drunk people, more people desperately trying to buy presents people neither want nor need (stop that!) …and don’t even get me started on some people’s behaviour during Boxing Day sales …I once had to stop two women fighting over a pair of pants. Pants!!!

So today, make eye contact, express your gratitude and spread some kindness.

Wishing you all a fabulous Monday!

With love, gratitude and kindness today and always Fi xx

gratitude, health, kindness, motivation, positivity

December Kindness – Day 1

You all know I love me some kindness spreading.

Every December I up my ‘Random

Acts of Kindness’ by handing out more envelopes but also by sharing daily kindness tips in ‘an alternative advent calendar’.

December, a time of love and connection has become so material and consumer driven that we can often lose sight of what matters (and who).

So this is my small step towards reminding us all of what matters…and it’s not something you can wrap in shiny paper and stick a bow on!

In fact…did you know I don’t give Christmas presents or cards…I’ll write a separate post about why and what I do instead.

So, today, on 1st December 2020 while many of you are eating the first piece of chocolate in your Christmas countdown I encourage you to join me in day one of my kindness calendar and LEAVE A POSITIVE NOTE IN A PUBLIC PLACE.

And…even better…send me a photo of it too!

With love, gratitude and kindness today and always Fi xx

health, holistic health, ovarian cancer, shamanism

Why I ‘Divorced’ My Cancer

On Friday night I held a shamanic ‘Cancer Divorce Ceremony’ on St Andrew’s West Sands Beach as I said farewell to my cancer. Not because my cancer has ‘gone’, far from it, but because I no longer want to be ‘married’ to the labels of my disease.
You see, I think many of us, unknowingly, become married to our cancer following a diagnosis. Very quickly we find ourselves in a co-dependent relationship with our disease, avoiding looking at aspects of our lives because we are using our cancer as an excuse to hold us back. I’ve been there too. I’ve done this and I speak from experience.
I believe, it is only once we ‘divorce’ and detach that we are able to say ‘who am I without this’ and ‘how has this relationship with cancer changed me, my values and my beliefs.’
I no longer want to ever use cancer as an excuse not to do my inner work, not to look at who I am and what needs to heal, not to show up in the world as my authentic self. So, I chose to divorce from it.
The ceremony itself was an energetic releasing of the ties to cancer. It was an acknowledging of all that it has brought me (good and bad) and all that it took away (also good and bad).
But it wasn’t just about me releasing the ties. It was about my loved ones doing the same too.
Each of us wrote a private letter to my cancer in which we expressed our farewell wishes. Some people expressed anger, some expressed gratitude, but ultimately, we were all saying goodbye.
None of the letters were read by anyone else, which meant that everyone was able to expre4ss their feelings in unfiltered, raw and open honesty. How often are we able to do that in life?
On the night I used shamanic rituals to open a space, calling in the four directions as well as inviting in guardians of the space in the form of the energy of loved ones other members of the circle had previously lost to cancer. I asked many of my shamanic friends to attend the ceremony and together we held a circle of energy for the ritual. I felt truly blessed to be joined by such incredible people.
There was music, drumming and chanting as the energy of the ritual built before we each took our turn to burn our letters on the fire and say our final goodbyes to cancer. Many of the group members had experienced cancer in their family lives too and their goodbyes went beyond my own cancer.
We also burnt the letters of my loved ones who were not at the ceremony too. In fact, over 30 letters were burnt on Friday night.
Everyone who wrote a letter mentioned how healing it was to acknowledge how my cancer has made them feel, to say the things they’ve longed to say, not to me, but to my disease.
This ceremony was an acknowledgment that it hasn’t just affected me, it has affected all of us.
I wanted to share with you all the letter that I wrote to my cancer. It’s not the whole letter. The whole one was nearly 4000 words. I’ve pasted it below. May it bring you peace and insight into the magic that can unfold when we open a conversation with our disease and with our limitations.
With love, Fi xx
“Dear Cancer
I want to say that I’m just really angry with you but that would be a lie. In truth, anger is not all that I feel towards you. I am also unbelievably grateful to you too.
You see, you enabled me to leave the life that wasn’t serving me. Yes, I could have done it on my own but you and I both know that I wouldn’t have. I needed to get sick. I needed an excuse.
You gave me that and, in doing so, you enabled me to not feel guilty when I left that life behind and started to forge a new path in the world. You also enabled me to say no to doing things that I didn’t want to do. I didn’t have to say ‘no’ as such, instead I was able to say ‘no, because of cancer’. It meant that people weren’t angry with me when I said no to things. Instead they were angry with you. I hid behind you in so many ways. You gave me an excuse. I told people that you made me more authentic but, I realise now, that, in so many ways the opposite was true. You actually enabled me to be less authentic. You gave me a mask to hide behind.
So, saying goodbye to you is actually really hard because now I will have to do all these things for myself. I won’t have you to hide behind anymore and that’s really scary because, in reality, I’m often really fearful of what other people think and I am often terrible at setting boundaries. With you there I was able to act like I wasn’t but that’s only because people don’t care what you say or do when you have cancer. Well, it’s not that they don’t care but I certainly got away with a lot more while I was able to blame you. I realise now that I’ve been using you as my scape goat. That is so hard to admit but it’s the truth. I’m sorry about that.
But, because of you I have grown so much. I have looked at so many aspects of myself that I never would have looked at previously. I have learnt to deal with a lot of things, and I am also healing a lot of aspects of myself that I hadn’t previously known needed healing. Thank you. I am so grateful.
Sometimes I wonder if it would be easier to go through life being ignorant. But actually, it wouldn’t be easier at all. It would be simpler yes but not easier. So, although it’s hard I am ready for the healing that it will bring me to say goodbye to you and to the excuses you gave me. I am ready to go even deeper with my healing work. I am ready to discover who I really am behind the mask of you that I wore for so long.
I am also so grateful for the relationships you brought me. There are so many people in my life now, some of them my best friends, who I only met because of you. Thank you. I genuinely can’t imagine what life would be like without all these people that came into my life because of you and the path you placed me on.
If I’m honest, I think that you likely saved my marriage. It’s not that it was failing or in trouble before you arrived by any means, but I was certainly on the trajectory of working harder and harder and pushing myself more and more in a bid to not look at the past traumas and buried emotions I was feeling. I was pushing Ewan (and many other people) away because it was easier but, because of you, I have slowed down and I now value him so much. He is such an incredible and precious man. I took that for granted before. Thank you.
I am thankful for all of the amazing experiences I have had because of you too. There have been so many things, too many to mention, all because you came into my life. Thank you.
But I am also angry. I am angry at how you sadden my Ewan and my loved ones. I am angry that by being in my life you make them sad and scared. But as I write this, I realise that it is not sadness that they show; it is love. I can’t help then but also be thankful for this too. You have shown me how very loved I am. I didn’t see that before. I couldn’t. I didn’t feel worthy of love and now I do. Now I know that I am worthy and that I have a purpose. You put me on the path to discovering who I am and what my life’s work is, and I am so grateful.
It feels really hard to say goodbye to you. I realise that I have interwoven my life with you. We are entangled. The life I have forged over the past four years is so engrained in you. I am scared of what it will be like for me to be authentic without you. I am scared about how I will show up in the world and how I will be received without you as my safety net.
I know that I want to change the world, or at least a small part of it, but not because of you. I don’t want that to be my legacy. I want to inspire people because of me. I don’t want people to think of me and then think of cancer. I want my cancer to be a distant memory, but I want my words to inspire, motivate and stay with people, long after my passing.
More than anything I want to live a long and healthy life. I don’t want to feel the pain anymore. I don’t want to feel the fear. I remember, before you, thinking that I would live forever. I want that feeling again. I don’t want to be worried constantly that I don’t have time to do all the things that I want to do. But then I guess this is what I tell people all the time, that we may die at any point and so we have to keep doing what we can with joy and passion in our hearts for as long as we are able. So, I guess I am making a commitment now to keep pushing towards my dreams and accept that I could live for many, many years but that I could also die tomorrow. The same could be said for any of us.
I really want that you know. I really want to live for many years. I want to be healthy. I want to become an old lady. I want to be free from you. I want you to leave my body. I want you to let me live my life now. It is my greatest wish. My long sought after dream.
But, regardless, I promise to commit my life to self-healing and growth and to the healing and growth of others. I promise I will keep striving forward to make the world a better place in the words I teach and the lessons that I share. This is what I want for me. This is what I want for the world. Whether I live until I’m 90 or die in my 30s, my dreams and focus will remain the same.
But I know that in order to do this, that I need to energetically say goodbye to you. It’s really hard. You’ve been a part of my life for so long. I am more scared of life without you than of life with you. In fact, it terrifies me. I am terrified of who I will be without you. I am terrified of what my life will be like. I am terrified of how people will treat me. I am terrified of what I will have to face inside of myself. I am terrified of the emotional and spiritual healing work I will have to do on myself and the authenticity I will have to express when I no longer have you to use as an excuse to express it. I am so scared of receiving rejection when I don’t have you to validate my words.
I am scared.
But I am more scared now of who I will be and how I will be remembered if I don’t release you. I am more scared now that if I don’t do this that I will become overwhelmed by you, and so will the memory of me. I am more scared now of losing sight of all I have the potential to become if I keep hiding behind you.
So, as hard as it is, I know that I need to say goodbye to you. I need to find out who I am without you. I need to find out how I can show up in the world without you as my safety net. I believe, only then will I be able to become the best version of myself and the person I was destined to be.
So, while I will be forever thankful for so much that you have given me and so grateful for the path you have put me on, it is time for me to say goodbye to you.
With gratitude and love for you always. Goodbye.
Fi Munro, PhD”

What Else I Wish I’d Been Told When I Was Told I Was Terminal

This is a message to all of you lovelies who have just received a life changing diagnosis.

I’ve been there.

And I want you to know something really important. Something I wish someone had told me four years ago when I was diagnosed with stage four, terminal, cancer.

Screenshot 2019-10-17 at 09.48.52Here it is…

I know it doesn’t feel like it right now but there will be better days.


I know it feels overwhelming and scary and hard and messy and too real and there are lots of ‘can we just fucking go back to how it was before now please?!’ moments but the sun really will shine for you again.

You will still laugh.

You will still love.

You will still have moments of pure joy.

You will still have magical adventures.

Will there be hard days? Yes of course there will…but what life doesn’t have hard days (diagnosis or not)?

Will the hard days be worth it? Abso-fucking-lutely!

I’m telling you this because no one told me it when I needed to hear it most.

When I was caught in the storm of my diagnosis (and prognosis) no one said…’Hey Fi, you know you’re are still alive right? You know you’ve not actually died yet? And so now might just be the best time ever to go and live some of your wildest dreams. Are you game?’

Fortunately I said it to myself!

If I’d thought my life was over the moment I’d got diagnosed then I’d have missed out on some of the best (yes the best!) days of my life!

I don’t want that for you.

What I want is for you to know that you are loved, you are seen and, above all, you are not alone and you ARE going to have good days again.

I promise.

So remember this, from one ‘terminal’ person to another, you are still alive and right now there is more right with you than wrong with you so go and live your fucking life!

And yes, you can live your life from a hospital bed, I’ve done it. And, I believe, that’s exactly why I’m still here today.

I love you.

Fi xxx

Read more in my book ‘How Long Have I Got?’ now available worldwide on Amazon.

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Children’s Cancer Awareness Month

I want to tell you a story about my friend Katy and her little boy Ezekiel.

One day, when Ezekiel was just 2 years old, he developed a “bit of a lump” in his abdomen, it just showed up out nowhere. It was right sided, painless and quite firm.

Katy thought he was maybe constipated, though it was a bit high up for that.

To be sure, she went to the GP who sent them up to hospital…just to get checked out.

But Ezekiel was admitted that night and the doctor wrote in the notes that he didn’t want anyone pressing too hard or even examining the swelling…”just incase”, he said.

The next day Ezekiel had an ultrasound. “He was quite happy”, his mum, Katy, recalls “he thought it was an adventure in the hospital and was quite excited. In fact, that night I had to stop him from jumping on the hospital bed!”

His blood tests (including kidney function) were all normal. The doctor was surprised by that.

The next day the sonographer asked Ezekiel’s parents if they knew what they were looking for, when Katy said “no” the sonographer looked away. Katy says it was at that point that she knew something was wrong with her little boy.

A couple of hours later they were waiting in his room, Katy was very anxious. “I think I knew something was wrong but I didn’t want to admit it to myself. I remember asking Stephen (Ezekiel’s Dad) “What if it’s something serious?” and him saying “It won’t be.” To which I replied “But what if it is?” and his response is one that I’ll never forget. He said “Then we’ll face it together. As a family.”

Minutes later their doctor came into the room with another doctor, a nurses and a couple of other people.

That’s when Katy and Stephen were told every parent’s worst nightmare. Ezekiel‘s ultrasound has confirmed a diagnosis of Wilms Tumour. Ezekiel was just two.

They were told that treatment would involved chemotherapy, a radical nephrectomy (kidney removal) and then most likely more chemotherapy and possibly radiotherapy afterwards, depending on the staging of the tumour. This wouldn’t be determined until after his operation.

“They left us to talk shortly after that and to think about what they’d said. We then had to make some of the most difficult phonecalls of our lives and tell our families that our beautiful little boy had cancer.” Katy recalls.

Over the next few days Ezekiel was transferred to Sick Kids in Edinburgh, where he had an MRI, port insertion, a biopsy and was started on Enoxaparin which was used to thin his blood as part of the tumour had started to grow out of his kidney and up the Inferior Vena Cava (the main vein running from the kidney to the heart). They were there for 6 days, after which Ezekiel started chemotherapy.

After each of the first 3 doses of chemotherapy, Ezekiel was admitted to hospital with a fever. Each time there was no sign of infection and his doctors concluded it must be the tumour reacting to the attack from the chemo.

A few weeks after chemotherapy started Ezekiel underwent a big operation where they removed his kidney and slit the IVC open to remove the tongue of tumour that was making its way up the IVC. It was very close to little Ezekiel’s liver so a liver surgeon was brought in from The Royal as well as a paediatric kidney surgeon from Leeds.

Ezekiel then had 27 weeks of post-op chemotherapy which is given to make sure any remaining cancer cells are killed off and to reduce the risk of relapse too. He was admitted a few times with infections and anaemia, etc. His sickness became very difficult to control and he lost a lot of weight during this time. His core muscles were affected too so he became quite clumsy and with his blood thinning injections he would bleed a lot when he fell over! There was still a clot in his IVC after the operation so he stayed on the Enoxaparin after he finished chemo.

In December 2018 he was pronounced ‘in remission’ and has remained cancer-free for the past 9 months, since then. He has clinic visits once a month, ultrasounds once a month, chest xrays every 2 months and MRIs every 3 months. He’s had a few longer term side-effect from chemo but nothing terrible.

Ezekiel turned four last week and has started nursery. He has been in remisison for 9 months now and is slowly gaining weight and readjusting to life after isolation. He goes to birthday parties, rides his bike, likes to swim and is able to do everything now that other 4 year old likes to do.

September is children’s cancer awareness month. Please share Ezekiel’s story. Not just for me, but for his loving parents Katy and Stephen and for ever other child with cancer and their families.

CHILDREN’S CANCER FACTS….from Ezekiel’s mum…

Here are some statistics around childhood cancer and what they mean.

FACT:4 out of 5 children who are diagnosed with cancer will survive.

REALITY: These statistics only take into account children who survive past 5 years. If a child relapses and dies, they’re still considered a survivor. The real statistics are much lower but “4 out of 5” sounds better. Also, most cancer-related deaths in children are not classed as cancer-deaths because the death certificate usually reads along the lines of whatever ended their life. For example, if Ezekiel died from a respiratory virus during treatment (which he almost did) the cause of death of his birth certificate would read “Corona virus” rather than “Corona virus caused my lowered immune system due to chemotherapy treatment for cancer” so the official stats don’t take that into consideration either.

FACT: big charities like Cancer Research UK only give about 1% of funding to paediatric cancers. That’s 1% for ALL children’s cancers.

FACT: Most of the chemotherapy drugs used I the UK were developed in the 60s, 70s and 80s for adults (the ones used for Ezekiel were developed in 1963 and 1964) The children get a watered down version of these drugs because it works but they also come with the usual harsh side-effects and can actually cause cancer, later on in life.

FACT: more than 95% of children who have had chemo/radiation in their early years will develop a serious health condition by the time they’re 45 as a result of their treatment.

FACT: 30-45% of parents who’s child has been treated for cancer will develop symptoms of PTSD.

FACT: Only 4 medications have EVER been developed and FDA approved for use on children

FACT: Childhood cancer caused more deaths than any other disease. Its not rare.

“Cancer isn’t easy for a lot of people to talk about. But childhood cancer is even more difficult to comprehend, it’s difficult to consider and its difficult to talk about. So people just don’t. They avoid the subject, they avoid the parents, and they avoid the reality of what could happen to their child. Friends become strangers and strangers become friends.” – Katy

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I’m so glad I met Katy…she is a stranger that became a friend and she has a special place in my heart.xx