health, holistic health, ovarian cancer

Carol Bareham 22.12.1972 – 01.04.2020

As many of you are already aware, my dear friend, my ‘cancer bestie’ as I liked to call her, passed away on 1st April this year.

Like me, Carol lived with late stage ovarian cancer, being diagnosed just 4 months before me.

In the year leading up to her death we talked almost every day about life, death and love. In many of those chats Carol would remind me that when she died (always convinced that she would die before me and no wonder with the treatment options in Northern Ireland being far inferior to those available to me in Scotland) that I was to write ‘an epic blog post’. No pressure Carol!

However, despite writing being one of my most utilised healing tools I have found it impossible to write this post for her until now, 6 weeks after her death. The reason? Writing it means that she is actually gone. Writing it is the final goodbye, the ‘closure’ I have been avoiding. Writing it means that I really don’t get to see my friend again and that reality has just been too hard to face.
Almost every day, I find myself having conversations with her in my head,  desperately seeking the advice and guidance she offered me over the past four years of friendship, unable to believe that she is actually gone.
However, despite my avoidance, I could imagine, only too well, Carol telling me to get a grip of myself and write the bloody thing already so, here goes. Carol, this is for you. I’ll love you for always.
—-
Carol and I didn’t meet in ‘normal’ circumstances. In fact we first ‘met’ over the internet on 8th May 2016 . This was an auspicious date. It is World Ovarian Cancer Day and it was also the day before I had major surgery to remove multiple organs from my cancer ridden body.
Carol wrote a comment on my blog that day which read Good luck tomorrow…I had the op in January after 4 chemos too and I am pleased to report all went well and I recovered from it well. Having 2 further chemos after the op, well that is another story! I hope it is a big success and will be keeping everything crossed for you. Have just discovered your blog and have been hooked on it all day…have experienced very similar thoughts and feelings, you have a lovely way of saying what many of us cancer patients are feeling. Will be awaiting your next post now post op! Carol xxx”
People comment on my blog and send me messages and emails all the time. I mean I literally get hundreds of private messages every week and yet this one, from Carol, stood out for me and, to this day, I have no idea why but I am so glad that it did. This simple message became the start of one of my most valued friendships and just goes to show we really never know what a simple act of kindness will lead to.
Over the months that followed Carol and I would often exchange weekly messages. Over time we exchanged phone numbers and began texting each other on a more regular basis. While I had no one in Scotland who I could talk to about living with late stage ovarian cancer, I had found in Carol someone who I could share everything with. She just ‘got it’. Every thought, worry, hope, fear, anxiety, pain, horrible embarrassing experience cancer had brought me, Carol had seen and experienced too. There is nothing quite like a friendship build on the common ground of literally shitting yourself through chemotherapy!
However, despite regular messaging, it wasn’t until two years later that we first finally met in April 2018 when Carol and her family were visiting Scotland from their home in Northern Ireland. Despite having planned a lovely ‘normal’ get together my cancer had other plans and I ended up in hospital for the entire time Carol was over. Despite this she still visited me and it was pure joy to finally put a face to the name I had been messaging and sharing ‘everything’ with over the previous two years.
Then, a whole year later, in April 2019 I visited Carol in her hometown in Northern Ireland as part of my book tour for my second book‘How Long Have I Got?’
During this trip I was finally able to meet Carol’s incredible family and friends, including the group of ‘Northern Ireland Ovarian Cancer Ladies’ that she had established. I have never been made to feel so welcome and supported.
Another year of messaging passed during which Carol’s health started to decline more rapidly than my own. She had stopped chemotherapy; her body, mind and spirit having now had enough and she was now doing her best to enjoy her life as best she could despite cancer. However, it wasn’t until winter 2019/20 that I finally started to accept (as best as one can accept) that I was going to lose my dear friend.
At the time my own health was declining rapidly and so began a daily discussion, peppered with the darkest of humour and jokes that only two terminal cancer patients could share and get away with, of who was fairing worse off. This shared dark sense of humour and a willingness not to shy away from the hard times is one of the reasons I will always love Carol so much.
One of the most powerful things about going through this cancer experience together was that we were able to have completely honest and frank discussions. Neither of us ever avoided discussing the reality of either of our situations. And neither of us ever pretended things were any easier than they actually were. I didn’t pretend that Carol wasn’t getting sicker and likewise she offered me the same courtesy. This is a rare and beautiful gift, as hard as it may seem, because it meant that we were able to have conversations that may have otherwise been avoided.
For instance, once Carol had transitioned from her home to a local hospice and I had finally accepted that Carol was going to die, instead of pretending otherwise, I messaged her one day and said “I am either coming to your funeral or coming to see you now. Which would you prefer?” this was in response to her telling me repeatedly not to come and see her. I knew, however that this wasn’t because she didn’t want to see me but because, like many of us, she didn’t want to accept the love that I would be offering in the act of traveling from Scotland to Northern Ireland just for her. She replied almost instantly, “come now”. And so, I found myself sitting at my kitchen table, at 5.30am the following day making plans to go to Northern Ireland to visit her.

The earliest I could go was two weeks later due to a number of hospital appointments that I already had scheduled. During these two weeks our connection and friendship grew stronger. She knew that I was dropping everything that I could to come and see her and she accepted that love and connection. Similarly, I knew how important this time was for her and her loved ones, and I accepted the love and deep honour it was to be a part of this precious time. And I mean honour. So many of us shy away from facing the hardest moments in life like tragedy, grief and death but, I’ve found through my own personal experiences, that it’s in these moments that the greatest opportunity for connection truly lies and that is an honour, and a gift.

During this time some of my other friends would message me to ask how Carol was doing. Many would reflect on how sad it must be for her to be dying. I knew a different truth, however. Carol wasn’t sad. She was ready. Over the previous few months she and I had discussed frequently how she was done with the suffering her illness was causing her. She had taken time to connect with and love her family and friends and she was now ready to release the pain. It was because of this that I didn’t feel sadness about her dying. I felt loss yes and I felt pain, deep pain, but they were my pain, my loss, my imminent suffering, they weren’t Carol’s.

Her messages during this time and, indeed, her conversations when I visited her were all about how happy she felt about the life she had lived and how calm she felt about the death she now faced. I remember having a similar experience with my friend Ali before she died from the same disease. Our final conversations weren’t filled with fear, they were filled with love and acceptance. This, I’ve realised is a gift that the dying can offer the living; to show peace in the face of death. In exchange and recognition of this, the living can offer the dying a gift too. We can choose to show up at this time. To be there, in whatever way they need us. To express love and gratitude for the time we shared together. And, above all, to not avoid their death and our grief because it is too hard for us but, instead, to recognise that grief is often an unavoidable expression of love.

I’ll never forget the journey across to Northern Ireland to see Carol. The weather was wild to say the least. The boat rolled from side to side and up and down as many of the passengers took to lying down in a desperate attempt to avoid sea sickness. I have never been so grateful for a childhood brought up on boats in the Channel Islands!

When we arrived, after a stop for some much-needed food, Ewan drove me straight to the hospice. I wanted to see Carol straight away. I’d waited two weeks and I wasn’t waiting a minute longer. He dropped me off at the door, driving away to check into our hotel. This is what I’d asked for. I wanted to see her on my own first. I wanted time for the two of us to connect. Part of this was about my needs, but part of this was also about protecting Ewan. Carol’s diagnosis is the same as mine and, as a result, our stories have often mirrored one another’s. Ewan knows this and I could see the fear in his eyes about what her now being in a hospice meant for me and, ultimately, what it meant for him. Despite the open honesty in our household about my death and, indeed, about everyone’s certain death, I still wanted to protect him from it being so tangible. It turns out, however, there was no need. When death is faced with love, in the way Carol taught us both to do, it can actually be a really beautiful thing.

I walked into Carol’s room with no idea what to expect. We hadn’t seen each other face to face for a year and for at least half of that time she hadn’t allowed any photos. But I needn’t have worried. I was greeted by the same smiling and vivacious woman I loved and remembered. Without a second’s hesitation she had wrapped her arms around me in a hug, despite her pain and multiple medical attachments, and was asking me to get into bed beside her for a proper chat. I, of course, obliged.

As I lay there with her laughing and sharing stories with one of her other friends who was also there, sitting in a chair beside her bed, I began to reflect on the beauty of this connection. Here we were, three women, all of us living with a terminal diagnosis of ovarian cancer, two of us currently receiving chemotherapy and one of us dying from the disease and yet there was not one ounce of sadness in that room. There was only joy. How often could I say the same of other encounters in my life?

While in Northern Ireland I’d spent my mornings with Ewan walking our dog Ozzy, before spending the afternoons and early evenings with Carol at the hospice. We spent most of our time together sharing stories and laughing. Carol had even managed to plan a short 80s themed party in her honour at which all of the people in her life were able to come along to; many of them to say their final farewells. It wasn’t a sad affair, however. Instead it was one filled with music, food, celebration and fancy dress. Above all, it was filled with love. This wasn’t a woman mourning her premature death, it was a woman celebrating her incredible life. As I stood back and observed all of these people coming to see her, dressed in full 80s fashion no less, I couldn’t help but think of my own death and how what I was witnessing would be exactly what I wanted for myself – love, laughter, music and, of course, fancy dress.

The following day I knew I would have to say my own goodbye to Carol. We didn’t have the 80s costumes, or the party to hide behind. We were having to face this head on, in full recognition of the fact that we would never see each other again. I spent the afternoon with her, as I had done over the previous days. We were joined by one of her best friends, whom had welcomed my presence with such warmth despite it, undoubtably, encroaching on their precious time together. During this time we recorded a podcast together. This was something that Carol wanted to do to not only dispel some of the fears around being in a hospice, but also to share some of the lessons she had learnt about life and death. Unsurprisingly, most of what she talked about was love.

We both put off the moment when I would have to leave. “Just ten more minutes” became a frequent and then desperate phrase until, eventually, there was no choice but to say goodbye knowing that we would never see each other again.

It was one of the hardest things I’ve ever had to do.

As I drove away, my heart broken, tears streaming down my face, I reflected on how often I take for granted that I will see someone again. You see, while I knew I wouldn’t see Carol again, I never know I ‘will’ see anyone else in my life again. I reflected on myself saying goodbye in a rush to those I love; dashing away, not always lingering to hear my loved one’s words, to hold them a little longer, to entwine our fingers, to kiss their cheek, to hold them close for just one more second. All these things I did with Carol instinctively as I fought back the inevitable, love filled, tears from cascading down my cheeks until I left the room, not wanting her last image of me to be one of sadness but, instead, one of love and joy.

In one of the last messages I sent to Carol after I had returned back to Scotland, I asked her “but how will I do any of this without you?” “Simple,” she replied, “You will love harder like I have taught you just as you make every day good like Ali (my other friend who died from ovarian cancer) taught you and you will keep living your life every single day as best you can for as long as you can.”

As I reflected on this and the legacies that her and Ali had gifted me through our friendships, I wanted to know what my own legacy would be. What message would I leave for the people I left behind and those that came after me? I realised then that there was no better phrase than “never at the expense of joy”. If I were to leave any kind of impression on the hearts of those I love and who love me then please let it be that.

This brings me to the final and lasting lesson and legacy that Carol left me and all those who love her: LOVE HARDER.

Perhaps it’s that simple. Perhaps it’s not about always thinking that you may never see a loved one again. After all, that does feel more than a little depressing. Perhaps, instead, it’s just about loving them harder.

What does loving harder look like?

For me it’s about looking someone in the eye when they speak to me, rather than looking at my phone. It’s about always valuing my time together with loved ones as sacred, fleeting and precious. It’s about listening when they talk. It’s about asking about the things that matter to them and caring about the response. It’s about making memories, laughing and experiencing joy but also about being there in times of need and support. It’s about not being afraid to show your vulnerability when times are tough and also not being afraid to show your awesomeness when times are great.

I don’t always get it right. Far from it. I’ll sometimes sit scrolling through my phone replying to messages rather than cuddling into Ewan on the sofa. Or I’ll get distracted when someone I love is talking and miss the important part of their story. But I catch myself now and I call myself out for it. I’ll pause and ask myself “Is this how I want to live my life? Is this how I want to be remembered? Is that what Carol would have done” And then I’ll make different choices the next time. Ultimately that’s all any of us can do; take little steps, day by day to love harder, to connect more deeply and to choose to spend our time with those that matter most to us. Anything else, over time, ultimately costs us our joy.

This is what Carol taught me above all else and it’s the lesson I will carry in my heart until the day I take my own last breath. May this lesson be a gift to you too, even if you never had the honour of meeting Carol for yourself.
With love for Carol and all those who love her always, Fi xx
I’m sorry Carol. This post isn’t as ‘epic’ as you might have hoped because how can I put into words what you truly mean to me, the lessons you taught me or the fact that I will always carry you in my heart every single day that I am alive and able to do so.
I may not have known you through your school years, never had the opportunity to work with you, to go to the pub with you, to have adventures or holidays or build wild and fun memories together but what we had was something entirely different from these types of friendships. What we had was a deep understanding of each other’s pains and fears, of our daily struggles and what it feels like to live with late stage cancer every single day year in and year out knowing that one day it will cause so much inevitable pain to those that we love.
What you gave me, dear Carol, is one of the greatest gifts anyone has ever given me. You gave me true, unconditional love and friendship that enabled me to be seen in all of my darkness as well as my light, without fear of judgment.
I am so grateful that cancer brought us together and so sad that it tore us apart. While this blog post may not have been what you hoped for (it’s a lot of pressure writing for a dead person you know!) I want you to know that when I publish my next book it will be dedicated to you my lovely so that everyone will know what an incredible woman you were and continue to be in the hearts of those who love you.
May your name and all that you stood for continue to shine bright for many years to come and, in your memory, may we all remember to tell the women in our lives to be hyper aware of the symptoms of ovarian cancer. I know that you, like me, had only one wish following your diagnosis – if we can’t be saved then at least let our diagnosis save the lives of other women.
So please, dear readers, share the following symptoms with the women in your lives. There is no screening test for ovarian cancer (no, smear tests do not test for it!) The only way to find out if you have it is to know the symptoms and see your GP if you have two or more of them for two or more weeks.
Please do not ignore any of these symptoms. Early diagnosis of ovarian cancer is curable…only late stage diagnosis is not.
THINK TEAL
T – toilet habit changes
E – energy levels dropping
A – abdominal pain and/or swelling
L – loss of appetite and/or weight
Carol and I also both experienced shoulder pain prior to diagnosis and I always start to get migraines when my cancer is spreading.
Know your body.
Don’t be embarrassed.
See your GP.
If you don’t do it for you or for me then, please, do it in loving memory of Carol Barenham.
With love and gratitude always, Fi Munro xxx
health

The Little Things

My brother in law is one of the amazing people working front line. Today he is also delivering us essential supplies as we are social shielding (I’m on chemo for late stage cancer, high dose steroids and no spleen).

I had chemo a few days ago and I’m feeling slightly worse for wear (understatement!) so it was the loveliest surprise that today he brought my niece with him and we had a quick hello through the widow!

I could cry from joy! 💜💙💜

It’s the little things in life that matter!…love, connection, joy, family, friends….all those things I certainly thought would always be there without question…now I’m 3 weeks into lock down and a minimum of 12 weeks to go…these stollen moments are what keep me going.

I’m so grateful for today and so hopeful for the day I can open my arms and have my niece (and her three crazy brothers!) run into them again.

If this situation teaches me nothing else, I hope I never take those moments for granted again.

This is what I live for.

Stays safe my lovelies 🥰😍🥰

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

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.

health, ovarian cancer, yoga

Raw Food for Post Cancer Holistic Health – Day One

Hello and happy Tuesday!
I’ve been thinking over my health lately and realised that it’s not quite where I want it to be…it’s been nearly 18months since I was diagnosed with stage four cancer and after months of being sugar free, vegan (except for occasional fish) and not eating processed food (plus 8 years of being gluten free) I still feel my diet isn’t optimal.

This weekend I went away with my family and found myself slipping easily into old habits of sugar and processed food. Not where I want to be at all!

The result? Today I woke feeling sluggish, tired and all in all a bit ‘meh’. And my skin has broken out again too! Eeek!

So what to do?

Well, after months of researching I’ve decided to embrace a raw food diet under the belief that live food is best for our health.

Now, let’s get one things clear, I’m not doing this for weight loss! I am a happy and healthy size 10/12 and I walk/practice yoga/run ever day. This is about achieving optimal health and helping my body to heal from the inside out.

So, today begins my journey with raw food. I’m under no illusions that it will be easy but hey, it can’t be as bad as high dose chemotherapy and major surgery can it?

I’m a complete novice so I’ve decided to share my story with you all in a ‘video diary’. If you have any advice or tips please let me know!

Here goes!

Love and light, Fi xx
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⭐️VOTING IS NOW OPEN!⭐️

I’ve been shortlisted for ‘The Health Blogger of the Year’. It would be super awesome if you could head here and vote to help me win.

You don’t need to provide any details (not even your name!), you just have to tick a box!

The winner receives a prize of £600 and if I win then I pledge to use it all for my random act of kindness to help spread more joy and raise awareness for ovarian cancer!
With your help I can reach more people and help to spread awareness of ovarian cancer; living with stage four cancer; invisible disabilities and so much more! 💜💜💜

New to my page? In Jan 2016 , at the age of just 30, I was diagnosed with non-genetic, stage four ovarian cancer. There is no stage five. Since then I’ve been campaigning to raise awareness of ovarian cancer in the hope that my diagnosis will help save lives. I have been handing out random acts of kindness to strangers as envelopes containing £20 and a card with the symptoms of ovarian cancer. I do this in the hope of spreading kindness and joy whilst also helping to get people to take about ovarian cancer! 💜⭐️🌈

In August 2017 I published a book entitled “Love, Light and Mermaid Tails” about my story and how I strive to live an incredible life with ‘terminal’ cancer. Get it here.

ovarian cancer

Chase Your Dreams 

I could have missed my run today. I could have looked at the bad weather and thought ‘nah I’ll stay in tonight’.

But instead I remembered the old me, the me lying in a hospital bed after surgery to remove half my organs. The me with stage four cancer fighting for her life. The me that would have given anything to be able to walk across the room unaided.

So I got into my running gear and I went for a run.

Was it tough? Absolutely!

But was it worth it realising how incredible my body is, how wonderfully well it has healed and how powerful it is to not only recover from cancer but to be able to run in the rain? Hell yeah!

I used to run to burn calories. I used to run to lose weight. I used to run to beat my personal best. Now I run for the old me. I run for my fellow warriors to show them that anything is possible. I run for health. I run for my future self! I run so that when I next see my oncologist I can tell her how amazing I feel!

I don’t know how far I ran. I don’t know how fast I ran. I don’t know how many calories I burnt. And I don’t care! What I do know is that I did something I once thought I’d never be able to do and that is the best feeling in the world!

Tonight I will be celebrating with a curry at a friend’s house – not because I ‘earned it’ but because life is too short to worry how many calories you eat as long as you are eating the right food! The main word being ‘food’ – not highly processed or ‘low fat’ bullsh*t!

Have a great weekend everyone! Go and do something you once only dreamed of!

Love and light, Fi xx

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You can now buy my new book on Amazon – “Love, Light and Mermaid Tails”

ovarian cancer

Why I hate the term ‘service user’: Chemo 4 – Day 9 (Reflections)

In my ‘pre-cancer’ life I had a career working to improve the health and care services people in Scotland receive. Some would call me a researcher or a designer or a project manager but really the title wasn’t important – what was important, for me, was ensuring that I was making recommendations for change that were what people wanted and would benefit them in the long run.

In this work I’ve always had a primary desire to improve health services; to give people ‘in the system’ a voice and ensure that their care is ‘person-centred’ – in short, ensure that they are in control of their care and maintain their voice.

When working in this field I’ve often come across the term ‘service-user’. This is a term used to describe ‘patients’ so they don’t feel labelled and feel they have an active role. But it’s always made me feel uncomfortable…

Who decided ‘service-users’ liked that title better than ‘patient’…my suspicion is it was likely us ‘designer’ folk in our effort of giving them a voice. The irony…we are just labelling them without asking them what they think and in doing so we may just be taking away their voice even more.

Let me explain…

In my experience when I worked with people receiving health care (aka patients) they, generally speaking, didn’t care what they were labelled as so long as they were listened to.

Now I am a ‘patient’ I can honestly say I would HATE to be labelled a service user!

Yes I use some services – I am a ‘service user’ at Amazon.com, at Tesco, at my local post office – but I am not a service user of the NHS! That implies choice. Or more simple, it implies desire.

I am a patient.

And I’m glad to be one. Again let me explain…

When in the hospital the label ‘patient’ offers comfort. It offers reassurance of my role. It makes me feel safe. In those hours when I am receiving active care in a hospital environment the term patient gives me control over my care. It creates the boundaries between me and the nurses; between me and the doctors; between me and the surgeons. It also allows these boundaries to be challenged and moulded as we work together shaping my care and getting to know each other as people.

  

The term ‘service user’ doesn’t. It doesn’t clearly define my role. It suggests I’ve chosen to have the care, that I’ve chosen to have cancer in the same way I’d choose to shop at Amazon.com over another online store.

Now…this may be hard for people to get their head round. How can the term ‘patient’ be more empowering than ‘service user’?

But it’s not really about the term. It’s about the term being used in the right place at the right time.

Is it right to be labelled as ‘patient’ all the time? No? Do I want to be a ‘patient’ when I am out for dinner for example? No? Then my label may be ‘wife’ or ‘friend’. When I am doing my food shop? No? Then my label may be ‘consumer’.

Only when in a hospital environment receiving care is my label ‘patient’. So what term should be used the rest of the time?

Person.

I am a person.  

A person who has cancer.

A person who is married.

A person who has siblings.

A person who loves nature.

A person who loves cooking.

A person who is female.

A person who sometimes needs to receive specialist care but who also sometimes doesn’t.

But, ultimately, just a person…

If we are really in the business of designing for ‘peole’ then this is the only label that is acceptable. 

I want to see a design community that embraces the notion that you don’t design service improvement with, for example, designers, doctors, nurses and patients (or service users…if you are still inclined to use that term…) in the room.

You design service improvement with a range of different experts of their own lives and life experiences in the room. You give each person the opportunity to share their experience. You value each experience equally. You don’t label people by their experience because their multi-coloured life experiences make their expertise entirely unique to them.

At the start of this post I said that what mattered most to me was “ensuring that I was making recommendations for change that were what people wanted and would benefit them in the long run”. Those ‘people’ are all the people involved. We can’t provide good health care, for example, that only benefits the patients, it has to benefit the healthcare staff too or, quite simply, it just won’t work.

Ultimately it has to benefit the ‘people’.

So, if you are working in this field and you want to make change…start spending less time on what you call the ‘people’ and more time ensuring you are involving and listening to(!) the right ones.

Fi xx

ovarian cancer

A necessary evil: Chemo 4 – Day 5…

I’m often asked what chemo side affects feel like…I mean how bad can they be?…well they are awful!…but at the same time (for me) they are managable and a necessary evil…

There is a long list of potential side affects and I’m pleased to say that I don’t get hit with them all!…and I really hope no one does! But the ones I do get feel like a mixture of your worst hang over, meeting flu, meeting the pain the day after an insane workout.
Chemotherapy attacks the fastest dividing cells in your body – whilst this enables it to attack cancer cells it also attacks your immune system, skin cells, hair folicules, nails, reproductive organs and the lining of your nose, throat, stomach and digestive track…hence the long list of potential side affects.

 
Following a chemo dose you are given a card of possible symptoms and asked to rate each symptom on a scale of 0-3 each day until your next dose. If any symptoms reach 2 or 3 (i.e. moderate or severe) then you can call a specialist cancer care line for medication to help.

I try to avoid this as it involves a trip to the hospital and more tests and waiting for results and ultimately feeling more like a vulnerable patient (I speak from experience) which is an emotion I try to limit to the day I receive chemo…although in the same breath this care line has been invaluable in reducing my concerns during my early chemo days when I had no idea what to expect and I’d have been lost without them! It’s just the hospital visits I try to avoid rather than the care line, thanks to which I’ve managed to get my post-chemo sickness under control due to some wonderful medication tweaking the oncologist department did after my first chemo – imagine severe food poisoning for five days!…

As a result my side-affects at this stage in the cycle (2 days post-chemo) include extreme fatigue, bone and jaw ache and nose bleeds. I find the bone and jaw ache the hardest but I’m comforted by the fact that it has passed within 5 days in my previous cycles – hopefully it will be the same this time! The bone ache is caused by the chemo attaching your bone marrow…I usually feel it in my legs, ribs and back. This can be distressing as I have cancer cells on my right lung and the pain in my back and ribs act as an unpleasant reminder of this fact.

The fatigue makes me crave sugar – and today I caved and had some gluten free cake I found hidden in our freezer. It was delicious!…although I’m not sure yet if it was worth it!

Today I’m trying to manage my side affects with plenty of fluids, healthy eating, sleep and long baths. Unfortunately another side affect of chemo is that is a depressive and in the first few days following a dose I really feel my mood taking a hit. Again this will pass but can be challenging when I am really needing my usually positivity to get through the worst side affects.

So today I am grumpy and sore but, as I always say, if cancer is taking the same hit as my physical and emotional state then it’s totally worth it.

Hoping tomorrow brings some relief.

Love and light, Fi xx

ovarian cancer

Mixed Emotions: Chemo 4 – Day 2…

Today is the day before chemo four and, as always before a chemo dose, I had a mixture of emotions ranging from excitement that my cancer would be receiving another hit to dread at the prospect of the onslaught of the subsequent side affects – I’ve just begun to start feeling like a normal human being again over the last couple of days how can it be time for another dose?!

As a result of the mixed emotions I also became terrified of my phone ringing today…let me explain…when they take my blood tests on day one there is always the possibility that my blood count will not be high enough for another dose of chemotherapy. If this is the case then the chemotherapy ward will call me to let me know. Normally they would call on day one, however yesterday was a holiday and so they would have been calling today. So, whilst I am dreading another dose of chemo it turns out that I was dreading not receiving it even more – crazy I know!

I class the day before chemo as my ‘last day of freedom’. It’s usually the day I feel my best as my white blood count should be at its highest point in the cycle. Although still suffering from fatigue and in pain from where my tumours are I wanted to do something nice for my couple of hours of exertion today and so had lunch with the most special little lady in my life – my four year old niece! We had a lovely time filled with giggles, play dough and stickers! Exactly what was needed to take my mind off of things. My favourite point was when out of the blue she said: “you are beautiful Fifi…but you do have no hair”. I love her!

After returning her home I was absolutely knackered! Unfortunately, however, the day before chemo also involves a late night as I am required to take 10…yes 10!…steroids at midnight. This is to help prevent me having a reaction to the chemotherapy tomorrow (I also have to take 10 more at 7am!). Thank goodness I have no issues swallowing tablets!

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Tonight also involves getting my ‘chemo survival kit’ together. My chemotherapy is administered over 7-8 hours and during this time I am sitting in an armchair unable to leave the ward so it’s good to have a range of activities to hand! This time I am taking a couple of books I am reading just now about cancer, a fiction novel, an adult colouring book (because they are amazing and sooo relaxing!) and a portable dvd player. I’ve learnt that sometimes receiving chemo can make me really tired meaning that I only have the energy to watch a rom com, whilst other times I am able to read quite easily…so now I take a range of things to cover all eventualities.

Having already had three treatments I now also appreciate the importance of feeling comfortable so I always bring slippers and a blanket too!

On a practical note I take gloves to wear on the way to the hospital – this is to help make my hands warm and subsequently help to make my veins come to the surface so that it’s easier for the nurses to get a cannula in. I also take anti-bacteria gel and tissues. Finally I take a notebook and my diary because I am likely to be given a lot of information and dates that my chemo brain will never remember!

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I also take some food with me. This is for two reasons…firstly hospital food is disgusting(!) and secondly as I have a gluten allergy and now also limit my dairy and sugar intake it is much easier to control what I am eating if I make it myself. This time I am taking a homemade buckwheat salad (yes buckwheat is gluten free – news to me too!), some seeds and some fruit.

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So for the next 90 minutes I will be fighting sleep and tiredness until I can take my steroids and go to bed. In the past this dose of steroids causes me to wake me up about 2am with a burst of energy and I am then unable to sleep the rest of the night – we will see what happens tonight…

Love and light, Fi xxx