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
Follow me on YouTube, Facebook, Instagram and Twitter.

⭐️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

—-

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!

12952855_10208638448536940_1548944650_o

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!

12962680_10208638377495164_1074889468_o

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.

12922340_10208638377215157_247514102_o

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

 

Uncategorized

Going home…

well after what feels like a million years I am finally getting to go home…

I’ve had biopsies and blood tests, another abdominal drain – this time removing 4.5 litres of fluid over two days…where the hell does it all come from?! But I am finally getting to go home and spend time with my fur babies!!…two cats and two chickens!

946154_10208037479833098_298845831990080764_n

I can tell looking at this picture that I have lost a lot of weight since my diagnosis only a couple of weeks ago but I’m still smiling! 🙂

love and light, Fi xx

Uncategorized

Stage Three Ovarian Cancer*

The next morning my parents arrived and it was wonderful! They had been in Spain when I had to tell them the news and had spent over 24 hours driving back (with little to no sleep acquired only in service station car parks) since my diagnosis and I have never been more happy to see them!

I may be 30 years old but let me tell you, when you hear you have cancer you are instantly a 6 year old wanting a cuddle from your parents…I don’t care how old you are!

The nurses kindly let us sit in a side room together and we talked for a couple of hours about my diagnosis and the questions they had. I am in awe of their strength for me as I can only imagine what was going through their heads but, as ever, they respected my positive outlook and stayed optimistic and strong throughout our chat.

Again, I repeat that the hardest part of a cancer diagnosis is telling the people that you love that for some unknown reason this devastating illness has now selected you.

After my parents left my husband and I were met by an oncologist and macmillan nurse to receive my full diagnosis.

They explained that my cancer had spread to stage three. This meant that it had spread out with my pelvis and was now in both of my ovaries, my womb, my peritoneum (the membrane that surrounds and keeps my organs in place) and my omentum (the fatty membrane that covers the front of my bowel). I’ve included a very helpful image from Macmillan Cancer support’s “Understanding Cancer of the Ovary” booklet (pg. 13) incase, like me, you hadn’t taken all this in during biology at school!

12637260_10208013751039893_441820548_o

They explained that this diagnosis meant that I would need to have a full hysterectomy as well as having my peritoneum and omentum removed and that this would involve a team of up to 6 specialist surgeons in one operation. They also explained that I would need chemotherapy and because of the aggressive nature of my cancer (feisty like me!) they would be starting with chemotherapy before surgery and repeating the CT scan after three rounds of chemo. Yay more dye in my wrist – note sarcasm!

They went on to explain that the CT scan had also shown a small collection of fluid in my right lung and that this would need to be drained to be tested for cancer cells. If this did contain cancer cells then I would be diagnosed as stage 4 because the cancer would have spread to organs out with my abdomen. It goes without saying that this was a lot of information to take in but I can honestly say that the clarity that it was explained in by the oncologist and the support of my Macmillan Nurse made it all the more easier to take in.

**warning the following may be graphic for some**

I was told that I would need to have the fluid drained from my lung and that this would need to be done straight away. This was to be done in the respiratory ward of the hospital where a Dr used an ultrasound on my back to locate the fluid and then inserted a needle into my lung through my rib cage and extracted the fluid using a syringe. Remember I said the dye going into my wrist for the CT scan was painful? Yeah that ain’t got nothing on a needle in your lung with no pain relief! Wow is cancer a painful process!

After the fluid was collected the Dr put it in three vials for me to take back to the ward for the lab to screen. I took these on my lap as I was being wheeled in a chair between wards. Now I’m going to be gross but they were warm and that was just weird! Yeah I know that the fluid had come from my body but oddly I just didn’t expect them to be body temperature- although it sounds kinda obvious as I type it!

**graphic description over**

After that ‘experience’ I was free to go home with my suitcase of drugs! A crazy concoction of pain relief and anti-sickness medication. Something none tells you when you get cancer….you need a huge handbag(!!) for all the notebooks, leaflets, medication, books etc you will need to carry with you at all times! Oh but you won’t have the strength to carry it so you will also need someone to do that! Haha. So my poor husband is on official pink/yellow/orange handbag carrying duty!

When I got home my awesome hubby wrote a motivational quote on our kitchen blackboard that will be my mantra as I get through this:

I have cancer. Cancer doesn’t have me.

That night it was pure nirvana just to be in my own home and own bed and able to get a good night sleep. The little things in life (that we are all often guilty of taking for granted) are really all that matter in the grand scheme of things…

love and light, Fi xx

* I was diagnosed with stage four cancer two weeks after my initial diagnosis of stage three.

Uncategorized

CT Scan…finding the cancer

Following the news I had cancer my consultant asked me to come to hospital the next day and be admitted as an inpatient. This was so I could get a CT scan, some medication to manage the pain and sickness and a drip to manage my dehydration.

I was told to arrive at 10am and, because I didn’t know how long I’d be in for and because I love an excuse for some nature time, I went for an early morning walk with my husband. Isn’t there something magical about the cold winter air when you are feeling down and crapy?!

12596908_10208013533434453_276415624_o

It was a beautiful day and really helped to give us some perspective, and time away from our constantly buzzing phones(!), to just be alone together and talk about what was going to be happening over the next year.

When we arrived at the hospital I was put on a drip as planned – cue a million attempts at getting a cannula in my hand!…hard to believe I used to be a blood donor with the hopeless veins I know have!

I was told I’d been booked in for my CT scan at 2pm so in the meantime I sat and chatted with my husband and two sisters playing ‘Cards Against Humanity’ – if you’ve not played it before I can only warn you that it is not for the faint hearted(!!) and probably sums up my dry sense of humour entirely! It is a great laugh!

There was almost a sense of relief in going for my CT scan – it may sound crazy but I knew it was taking me one step closer to my recovery and although I knew it was likely to uncover news I didn’t want to hear, it was all part of the necessary process. However, once I was in the CT room I had what we will call my first ‘moment’. They had to put dye in the cannula in my hand and it was so painful! I am pretty good on the old pain threshold side of things but wow was that a sore one! I cried and think I may of actually screamed at one point as the poor nurse injected the dye and rubbed my hand for comfort.  On reflection, this was the first time I had been alone since my diagnosis and I think what actually caused this reaction wasn’t the pain but the reality of a long journey in which often only medical staff would be able to hold my hand.

The CT scan only lasted about 10 minutes and then I was able to go back to my bed on the ward. I was exhausted – it is amazing how much cancer (and not being able to eat because of cancer) exhausts you!

—-

That evening my husband and I met with two oncologists and were told the early results of the CT scan. They explained that they review the suspected primary sites first (in my case my ovaries) and then your vital organs (head, liver and lungs) and then the rest. Whilst we knew we would get the full results the following day following their multi-disciplinary team (MDT) meeting they wanted to let us know that it had been confirmed that I had cancer in my ovaries and that my head and liver were clear – well thank f%&k for that…some monumental good news in a sea of crazy!

—-

That night I didn’t sleep well – a result of having a bed next to the nurses station and the anxiety of waiting for the full results the next day.

love and light, Fi xx