FiMunro

love, light and mermaid tails


1 Comment

It’s a Mother F*cking Partnership

Ok. So, many of you know that I worked as a researcher before my cancer diagnosis. In fact, this role saw me work for a number of NHS health boards, the Scottish Government and some charities. The main focus of my work was ‘person-centred care’ and how to get patient’s voices heard in a system which, often, seems designed to do the complete opposite.

Since my diagnosis – and extensive experience as a patient with a critical health condition – I have learned that if you want your team to treat you like a human (and not a disease or medical diagnosis) then, quite simply, all you need to do is treat them like a person in return!…for more on this please see my blog post entitled “I’m That Patient”.

Now, I know some of you have shitty members of your health team and no amount of seeing them as a person is going to fix that. Some people are just assholes and, in this case, clearly in the wrong job. That aside, when members of your health team want to help you, which 99.99% of the time is the case, then the best thing you can do is help them to help you.

Quite simply, it is a motherf*cking partnership that we are striving for!

So, with that in mind, I requested an appointment with my oncologist. Now, yes I have just seen her only last week when she gave me the news that my cancer had recurred but, as I am now exploring the possibility of alternative and complementary therapies it felt imperative that she be involved in this process.

Now, for many cancer patients it can be a nervous moment when you have to discuss what alternatives you are doing (or hoping to do) with your oncologist. Thoughts of doubt can often fill your mind and you may put off the discussion. In fact, many people tell me that they won’t tell their oncologist what alternatives they are trying for fear that their oncologist will stop treating them. (Note to any oncologist reading this: please encourage and support your patients to have these discussions).

HOWEVER, it is vital(!!) that you tell your oncologist because: A. It allows a relationship built on trust to develop between you; and B. Some alternatives can negatively impact traditional treatment (true story!). So, please always be honest to save yourself the risk of doing yourself more harm than good when you may already be in a critical situation. Remember, your oncologist has dedicated their working career to trying to save your life. Think about that. Let that thought sink in for a minute. They are on your team! (If your oncologist is one of the aforementioned assholes and really isn’t supportive then change them. Your health is in your hands. Seriously!)

Now, ranting over, I met my lovely oncologist today and we had a lengthy discussion about my thoughts and feelings around various completely theories I’ve been trying or that I am considering trying. Despite all of the horror stories you may have heard, my oncologist did not judge me, she did not criticise me, she did not tell me I was an idiot. Instead, she listened and she offered informed and educated guidance…in fact, she helped me navigate the minefield of cancer treatment options including alternatives, trials, private health care and so on.

Here is just a brief overview of some of the things we discussed:

Antibiotics following a Splenectomy

I am not shy about my feelings on taking antibiotics for the rest of my life because I had a splenectomy in May 2016 as part of my cancer treatment. Without overly ranting about this again (Iwrote a whole blog post about this already), my basic view is that antibiotics are bad for your gut health, which is a massive part of your immunity and I don’t want to undo all of the hard work I put into my diet my stripping my gut of all its good bacteria.

So, I had an honest conversation about this with my oncologist and I made the decision to stop taking my antibiotics. Now, let’s get something clear, my oncologist DOES NOT support or encourage this decision as it goes against medical guidelines. However, despite this, it is still important that she knows about this decision so that if, worst case, I develop an infection, she knows that I don’t have any maintenance antibiotics in my system. Also, it enabled her to guide me on what to do should I develop an infection – start taking my antibiotics and seek medical help.

This journey isn’t always about our medical team agreeing with our choices. Instead, it is about them knowing our choices so that they can make informed decisions about our care based on the full picture.

I stop taking my antibiotics tonight (exciting and scary times) and so it would be great if sickly people could avoid me (even more than usual)! Thanks xxx

Acupuncture

As I mentioned previously, I am starting acupuncture next week. By discussing this with my oncologist I was able to establish what lymph nodes I had removed during surgery so that the acupuncturist can adapt my treatment accordingly. This is a prime example of the importance of a complementary therapist needing the full picture from the medical practitioner and, this, the importance of discussing complementary therapies with our medical teams.

Folic Acid

My instincts have long told me that folic acid is involved in the spread of ovarian cancer. Prior to my diagnosis I was on double dose folic acid as my husband and I were trying for a family and I have a gluten allergy and medical guidelines recommend an extra strong dose if you have any ‘gut’ issues (this was prescribed by my, then, GP). My instinct has always told me that this played a part in my cancer developing so quickly.

So, recently when I reviewed my supplements and I noted that the new ‘Vitamin B Complex’ tablet I was to start had folic acid in it, my instinct was once again screaming ‘NO’ at me. I did some research (prompted by a serendipitous conversation with a pal) and discovered that ovarian cancer cells have extra large folic acid recaptures and, in fact, this is how some new targeted treatments for this type of cancer work – they ‘trick’ the ovarian cancer cells into thinking they are folic acid, when in fact they are something else designed to attack the cell.

When I discussed this with my oncologist I began to realise that it was not appropriate to take folic acid in supplement form because new research indicates that ovarian cancer cells need extra folic acid in order to grow and develop. Scary stuff eh?!

This is a prime example of all cancers being different and the importance of discussing your supplements with your oncologist.

Blood Tests

Through today’s discussion I have requested a number of blood tests that will aid my personal understanding of my health situation, and also agreed to a number of blood tests that will aid my oncologist’s understanding of my health situation.

So, for me, we are testing my vitamin D, Iron, magnesium and B12. For them, we are testing my blood count and my ovarian cancer markers. For both of us we are testing my folate (which relates to folic acid).

By working in this collaborative way we are both getting a clearer understanding of my health and how my cancer is currently behaving in my body. I am excited to have this information…I’ll blog about it in time.

We discussed much more, some of which will feed into my treatment choices over the next few months…all of which I will keep you updated on. However, the main thing I want to get across (in case it isn’t quiet clear enough) is that it is fundamental to your optimal health that you discuss *everything* with your medical team. They want to help you and they can only do this if they have a full, honest and clear picture of your own personal treatment plan.

Only together can you have the best possible hope of returning your body back to wholeness.

I am eternally grateful to my oncologist, surgeons, nurses and entire medical team because, quite simply, without their care and compassion I wouldn’t be here today.

Please grab your medical relationships by the balls and take the first step in creating your own partnerships.

It’s f*cking awesome when we can work in this way.

Love and light, Fi xxx

To fund my endeavours please donate through GoFundMe – https://www.gofundme.com/FiMunro or on paypal – f.k.munro@hotmail.com. Thank you.

Disclaimer – please always speak to a specialist practitioner before making any changes to your treatment plan. I am not a trained medical professional and this blog serves only to share my personal experiences.

Advertisements


4 Comments

Week 1 – Let the Healing Commence

Wow! What can I say?! I am overwhelmed with the abundance of love and light coming my way recently in the form of your generous donations to my funding campaign so that I can seek complementary therapies. In just a few days you have donated nearly £5000! My heart swells with gratitude for you all.

I am already busy putting your money to good use and I will try and document everything that is going on when I have the time and energy.

Supplement Regime

I have been taking a range of supplements since I was diagnosed, as detailed in my book, however, in light of my updated health situation I felt intuitively that I needed to reevaluate these. So, with the help of a friend’s mum who works in this field of expertise I have made a number of changes.

It feels inappropriate to detail the changes I have made as every body and every diagnosis is different so, instead, I would advise that you seek guidance. It is also important to note that some supplements can interfere with other treatments so always be open and honest with *all* of the practitioners caring for you.

I would, however, like to highlight that vitamin C is good for your immune system and vitamin D is important, especially if you live in the northern hemisphere – in fact it is advised by the NHS that everyone living in Scotland take vitamin D supplements. Vitamin B12 is also essential for those on a vegan diet. The rest, I shall leave to your own research and professional guidance.

Under her guidance I also purchased some more organic frankincense oil. This was something I used extensively for the first 18 months following my diagnosis and I had become complacent and stoped using it. I love essential oils and frankincense is a particular favourite of mine and so I have reintroduced this into my daily regime in my morning Himalayan salt baths and homemade coconut oil moisturiser.

There is also increasing evidence suggesting that the use of frankincense oil can be beneficial when the body is healing from cancer. I encourage you to have a *google* around this topic.

TOTAL COST: for my new supplement regime and oil I spent around £100.

Chinese Medicine Doctor

Many of you know that I have a long standing interest in Chinese medicine and how it relates to the dis-ease in my body. I have no experience or knowledge in this area, but rather just feel drawn to it by my intuition. Despite feeling this way since I was diagnosed two years ago, I have never actually taken the plunge and booked an appointment with a Chinese medicine doctor (CMD)…until now!

Yesterday I found myself sitting with not one, but two CMDs. It was an eye opening experience.

Firstly, they spent 90 minutes discussing every aspect of my life and health. They focused not only on how I feel now, but also how I felt in the years before my diagnoses. The consultation was very thorough and I have no doubt that they now know more about me than my oncologist – their questioning covered everything you could think of…even (and perhaps particularly) my temperament. I am told, in case you are interested, that my temperament is ‘liverish’ – that is I have a quick temper, I don’t process anger easily and I have a fire within me. Who me?! Yes, my husband will confirm I am sure!

They then asked me to lie on an examination table and they checked my pulse in both wrists, felt my legs and feet and poked around my neck (I wish I had asked more questions about what they were checking – I will next time). They also checked my tongue. This I found particularly interesting as a few weeks before my recurrence, my tongue developed some deep cracks in it.

On looking at my tongue one of the CMDs told me that my digestion was bad. I tried to assure them that this was not my main concern but, after a discussion they explained that whilst, in Western medicine, the spleen relates to your immune system, in Chinese medicine, your spleen relates to digestion of food and emotion – ok, this I can relate to! As it happens, the cracks in my tongue were, you guessed it, in the spleen area of my tongue! So, not only are my tumours on the spleen meridian in my body but now also my tongue is indicating spleen issues. You can’t make this stuff up! (For more info on why this fascinates me please read my previous blog post).

So, what did the CMDs suggest? Well, firstly they wanted me to take herbs. However, as I take a lot of supplements they didn’t want herbs to interfere with these and so, instead, they had other plans. They put the herbs in my belly button! Yes, you read that right! Weird? Maybe. But, nothing ventured, nothing gained so I was game!

I am told to keep them in there for as long as possible. In fact, they gave me a tub of herbs and some dressings to take away with me.

To work on the ‘fire’ within me and my ‘liverish’ temperament I have been prescribed several acupuncture sessions which I am SUPER EXCITED to start as I have never had acupuncture before. These start next week and I’ll keep you posted.

TOTAL COST: for my consultation and initial herbs the charge was £0 (super kind!). Acupuncture sessions are £35 for 90 minutes. I will keep you updated on costs for herbs and future appointments.

Infrared Sauna

There is soooo much research about the therapeutic benefits of infrared saunas. They are great for detoxification, boosting immunity, helping reduce fatigue, aiding relaxation and helping with aches and pains. Needless to say, if you have cancer then they are indicated as treating a number of symptomatic affects as well as helping your body to get to a state where it is better prepared to deal with the cancer.

If that wasn’t enough to convince you of their use then I know that, from my personal experience, when I have used an infrared sauna extensively over a few days (i.e. when I have been on holiday where the hotel had one), my cancer markers have dropped. Maybe a coincidence? Who knows. However, either way, I have wanted to have one of my own for ages!

Now, having your own sauna isn’t the most practical of things as, not only do they cost a lot of money, but they are MASSIVE.

But I have a solution! A recent, serendipitous encounter with a fellow cancer warrior who I had previously met at one of my book talks led to a discussion about infrared saunas and she told me about a blanket version that she had just purchased.

I was intrigued and had a search on the website she provided and voila I was convinced! These nifty versions allow you to lie on your floor or bed wrapped up and meditating while receiving the same benefits of sitting in a giant sauna!

So I have purchased one and, although it arrived today, I am yet to try it. I think it will become my evening treat while I do my pre-sleep meditation. I will let you know!

TOTAL COST: The one I purchased cost £219. If you are a beneficiary of ‘Yes To Life‘ then you can receive a discount.

‘Yes to Life’

Some of you will have heard of the charity ‘Yes to Life’, however, for those of you who haven’t they “empower people with cancer to make informed decisions about their cancer care options; providing information to guide people through the confusing options for care and lifestyle choices. Their aim is to help them make informed choices by simplifying the complex and facilitate access to expert knowledge.” (Taken from their website).

Basically, if you send them an email then you can have a chat with one of their team who will be able to advise you on whether they can give you some help funding (available for those with monetary issues) alternative cancer treatment, and also, to point you in the direction of holistic cancer doctors who can work with you to create a treatment plan – this part made me particularly excited.

The women I spoke to on the phone was very informative and spent about 45 minutes going over everything with me in great detail. She also directed me towards various aspects of their website which offer lists of therapies for particular cancers available in specific areas of he country – i.e. I can look up alternative/complementary therapies for metastasised ovarian cancer in Scotland. This is beyond helpful and cuts through a lot of the ‘minefield’ situations we often experience when facing a cancer diagnosis or recurrence.

Their website also has a range of discounts for various cancer treatments, such as the aforementioned sauna, so it is definitely worth a look.

TOTAL COST: the consultation with ‘Yes to Life’ was free. HOWEVER, consultations with the holistic cancer doctors are pricey. I have booked one that costs around £300 – I told you they are pricey! I have done this because I want to know if it is worth the money so that I can feed this back to all of you lovelies. Personally I am apprehensive about this as I think there is no reason to change such prices. Let’s see where it leads to…

Valuing Healing Time

One of the biggest steps I have taken since my recurrence is to drastically cut back on things in my diary. I am a people pleaser by nature but, right now, my only purpose and priority must be on healing. So I have (finally) learnt the power of saying “no” to anything that does not serve to put my body in a better state of health. The result, quite simply, is empowering! I feel in a much better state of mind and have more time to focus on what I love doing – as well as more time on my healing journey. This is not always easy or possible, I know, but (wherever possible) I encourage people to cut back and embrace the power of saying no to anything that doesn’t serve you, so that you can say a big fat YES to everything that does….like time on the beach (even in Scotland, in January!)

TOTAL COST: it costs £0 to start putting yourself first; in fact, you may even save some money and you will definitely save some time. With these savings I encourage you to buy and read “The Life Changing Magic of Not Giving a F*ck” by Sarah Knight. It is, as the title suggests, life changing!

Yoga

I LOVE yoga and I do it most days. The main difference I have made is to SLOW DOWN my practice so that I am now only practicing yin yoga. It is beautiful and empowering and it is really helping to calm my mind, body and spirit. Give it a try….and if you live local – come to one of my classes! I’d love to see you there!

Body Stress Release

I have mentioned this wonderful form of treatment to you lovelies before and also created a video with the practitioner I see in Broughty Ferry, Dundee.

Basically, the therapy works by the practitioner very gently working on different points in your body to release any trapped stress – I am in no way doing it justice in my basic description so, if you have time, please watch the video.

I went for a session yesterday and asked Claire to ‘go very gentle’ as I was anxious that too much pressure would interfere with what was going on with my cancer. She obliged and I could hardly feel her touching me. As a result of her gentle touch, I thought that I would miss out on the benefits of the treatment. Boy, was I wrong! I got home and had some diner and was overwhelmed by a sudden tiredness. I was so tired I could hardly talk! So, very unlike me indeed, I went and lay in my yoga and meditation space and ‘zoned out’ for two hours. I felt like I was in a trance. Then I near crawled to bed and had the best sleep ever before waking up refreshed and pain free.

Now, the important thing to highlight here is two fold. One, always speak to your practitioner about your concerns and how the treatment can be adjusted to your needs. This will be no problem for a good practitioner and will also allow you to remain empowered! Two, listen to your body. If your body is begging for time out to heal then honour this. If, instead of listening to my body’s needs after this session, I had ‘powered through’ and had a busy night then I would have not only wasted the efforts of my practitioner, but I probably would have made myself feel worse. This notion was encouraged and supported by the Chinese medicine doctors who highlighted the importance of taking the rest of the day to myself following any ‘healing work’.

Remaining Informed

I love to read and and to also watch documentaries. This week I have been reading “You are the Placebo” By Dr Joe Dispenza; and “The Life Changing Magic of Not Giving a F*ck” by Sarah Knight.

I have also purchased “The Biology of Belief” by Bruce H. Lipton.

I have watched ‘Heal’ and ‘E-Motion’ which are both FANTASTIC documentaries.

I hope this all provides a helpful overview of some of the stuff that has been going on in my healing journey in the week following being told my cancer had recurred.

In honesty, I feel fantastic. I have no pain, no symptoms and my energy levels are good. I am continuing to explore my options with great enthusiasm and will keep you posted. It really is a blessing to be on a life path that allows me to explore and share in this way.

Love, light and healing to all of you on this wonderful journey of life, Fi xxx

To fund my endeavours please DONATE HERE or on paypal – f.k.munro@hotmail.com. Thank you.

Disclaimer – please always speak to a specialist practitioner before making any changes to your treatment plan. I am not a trained medical professional and this blog serves only to share my personal experiences.


1 Comment

It’s All in Your (Lack of) Spleen

I am a huge believer in the notion that our emotions effect our physical health.

When I was first diagnosed in January 2016 and was told that my ovarian cancer had spread throughout my abdominal cavity and into my chest cavity, my primary focus became centred around healing my lungs so that I could be approved for surgery. AND, as many of you know, I did and I was 🙂

So, now that, after 16 months I remission, I have two new tumours I am taking the same approach.

My new tumours are on my right lung and next to my left kidney. In Chinese medicine it is believed that the lungs hold grief, sorrow, frustration and regret. I have always been very open about the fact that grief is an emotion that I struggle to express so it is no surprise to me that my lungs are, in a sense, my emotional weak spot.

Interestingly, Chinese medicine also believes that the kidneys are the source of the life force and that when we show signs of dis-ease in or around our kidneys that it is symbolic of our life force leaving.

This makes perfect sense to me…I don’t process grief so my lungs get sick. My lungs are essential for life so my kidneys get sick….still with me?

Let me take this one step further.

If we are to now move on to look at a meridians* in the human body then something really interesting happens.

The exact point of my two new tumours are on the spleen meridian. Now this may sound like an odd realisation at first glance, but let me explain….

Many of you know that I had several organs removed in May 2016 as part of my major surgery to treat my cancer.

You would expect that, as a young woman I would have been most upset about the loss of my womb and ovaries and, with them, my ability to have children. Or perhaps you would expect me to be upset that I now have a colostomy bag. But no. In fact, I view these as exchanges I made for my life and I embrace them with gratitude (I have written about these extensively in other posts).

However, what pisses me off most about my surgery (in fact the only thing about it that pisses me off) is that I had my spleen removed.

This upsets me (and causes me grief) more than losing any of my other organs! (Nuts, I know!)

But why? You may ask…

Well, firstly, I realise, on reflection, that it’s because it wasn’t entirely necessary to remove my spleen. It was done so to avoid a complication during surgery. Secondly, your spleen has a significant role in your immune system. As a result, having your spleen removed means that you have to take life long antibiotics. This I HATE above all other aspects of my dis-ease.

I’m sure you will no doubt feel my anger and grief around my splenectomy and notice that this isn’t evident when I talk about my hysterectomy or colostomy.

So, it comes of no surprise to me at all that my two new tumours have appeared on my spleen meridian. In fact, it makes absolute perfect sense to me!

So, clearly I have some work to do on accepting that I have had my spleen removed…maybe I should have a spleen funeral/party…(too far?…)

On reflecting about this I realise that my biggest issue isn’t that I am concerned that my immune system is lowered because I no longer have a spleen – our bodies are remarkable and I know how my wonderful lymphatic system is able to work without my spleen. In fact, it is scientifically proven that 2 years after a splenectomy our liver takes over the majority of the spleen’s function. Now if that isn’t evidence of how incredible our bodies are then I don’t know what is.

No, what annoys and upsets me is having to take 4 antibiotic tablets every day because I KNOW that antibiotics negatively affect our gut health and our gut is also responsible for the majority fo our immunity. Crazy logic eh?! In fact, even in America (the powerhouse of pharmaceutical prescriptions) they don’t routinely prescribe life long antibiotics following a splenectomy.

Now, I know why I am on them…without a spleen a bacteria infection ‘could’ overwhelm my body very quickly and wipe me out without warning so they offer a safety net. AND, because the spleen is hugely responsible for our bodies creating a high temperature, pus and infection markers in our blood, it is not always immediately obvious that someone with a splenectomy has an infection until it is, in a sense, too late.

That doesn’t mean I am any less pissed off about taking them because, despite all this knowledge and understanding, I still know how important diet and nutrition is and I know that antibiotics undo all of the hard work I put into my strict diet.

Arghhhh…..so, I think we are all clear why my tumours have appeared where they have and also on what I need to work on.

To conclude I would like to highlight the main BENEFIT of not having a spleen: no one comes near you if they have even a hint of a cold, virus, sickness bug (etc) which means I never get ill! HUGE PERK!…and highly ironic that the person without a spleen never gets ill.

So, even in the mists of my frustration there is (always) a silver lining and something to be thankful for.

Wishing you all a great day!

Love and light, Fi xxx

——

Does any of this resonate with you?

https://www.gofundme.com/FiMunro

http://www.fkmunro.com

——

* The meridian system is a concept in traditional Chinese medicine (TCM) about a path through which the life- energy known as “qi” flows.


3 Comments

GO FUND ME – Fi Munro Stage IV Ovarian Cancer

I’m only 32 years old and I have ‘incurable’ stage IV ovarian cancer. I’ve had six doses of chemotherapy and several organs removed in massive, extensive surgery. I went into remission for 14 months but now my cancer is back and I’m done with the poor prognosis offered to me by conventional medicine.

However, I’m not done with making memories and laughing with my wonderful husband; I’m not done with yoga; I’m not done with running; I’m not doing with walks in the woods or on the beach; I’m not done with holidays; I’m not done with adventures; I’m not done with movie nights, cinema dates or theatre trips; I’m not done with weekends away; I’m not done with days out; I’m not done with seeing my friends or playing with the children in my life; I’m not done with time with my family.

I don’t want to keep having my body bombarded with the cut/burn/poison approach that I‘m told will only extend my life by a couple of months, at the possible expense of months in hospital.

I still have a lot of living to do!…and I hope you can help…

I want to raise money to give me the option of alternative and complementary therapies that may (fingers and toes crossed) extend my life without reducing it’s quality!

In exchange, I will blog about the therapies I receive and give honest and open feedback about what is working for me and what isn’t. In a sense, I will be using my background as a PhD researcher to make myself into a mini research study (albeit a single case study!)

I already blog extensively about my journey to date and, in 2017, I was awarded ‘Health Blogger of the Year’.

Please support my endeavours and help me to not only live a longer and healthier life but also (and perhaps more importantly) shed light on the many alternative therapies available to people with ‘terminal’ cancer, in the same honest and unfiltered way that I share everything.

Me and my loved ones thank you from the bottoms of our hearts.

Love and Light, Fi xxx

DONATE HERE

——

#PleaseShare #StageFourCancer #IntegratedCancerCare #AlternativeTherapies #ComplementaryTherapies #OvarianCancer

Background…

In January 2016 I was diagnosed with non-genetic stage four ovarian cancer.

There is no stage five. At the time of diagnosis my cancer was terminal. I was just 30 years old.

Suddenly, everything I had identified as ‘me’ came to a stand still. In one moment, after months of pain, tests and assurances that it was “nothing to worry about”, my instinct had proved right and my worst fears had been realised.

I was lucky (for a while) and my cancer went into remission…it took six double doses of chemotherapy and having five of my organs completely removed and four others partically removed…and a lot of other complementary therapies like diet, supplement, yoga, reiki, body talk, body stress release…the list goes on!

Then, suddenly, in January 2018, I was told that my cancer is back.

Life had been great for just over a year and I even retrained as a yoga instructor (I now teach children and adults yoga and meditation)…then, over the festivites I had 2.5 litres of cancerous fluid drained from my lungs and my latest scans show a tumour on my right lung and one next to my left kidney.

Please help me by making a donation or sharing this post. Thank you xxx


Leave a comment

Ain’t Dead Yet Motherf*ckers

I saw my awesome oncologist today.The fluid on my lungs is malignant.

There are two little tumours in my body. One next to my left kidney and one on (not in) my right lung.

At this stage chemotherapy wouldn’t be offered even if I wanted it (which I don’t) as the tumours are little. 

So, for now, we can monitor my lungs and drain them again as and when required. Then, after they are next drained, we can put talc in my lung cavity and that should hopefully prevent fluid returning for a while. This is called “talc pleurodesis”.

There may also be trials in the future that I would be eligible for… I am sprinkling a lot of glitter on this thought!

I cannot go to Thailand…or get on a plane ever again as the risk of fluid returning is too high and, if that were to happen, I wouldn’t be able to breath very well with the air pressure. I am sad about this not just because I really wanted to go but also because I have already paid for the flights! HOWEVER Ewan and I will still be going away for three weeks in Feb…somewhere by train or boat…adventure (and hopefully some sunshine) awaits!

So what now?

I will take each day as it comes, thankful that I am still here and able to do all of the things that I love.

I will see the respiratory consultants and my oncologist regularly to monitor my lungs and overall health. I know I am in safe hands.

This weekend I was sad and angry (very angry) but now I feel more settled and know that, all things considered, I am very lucky to feel as well as I do.

I want to live my life as me, not as a cancer patient and fully expect to be treated exactly the same…jokes, dark humour and adventures are particularly welcome!xxx

Love and light, Fi xxx

Ps. I’m hoping I’ve preempted any questions…


11 Comments

I’m Done…and I’m also not done in the same breath

EDIT: this post is not about issues with the NHS…I LOVE the NHS. It is sadly at a crisis point but the staff, despite this, have always provided me with exceptional care and for that I am very grateful. This post is about something entirely different. It is about a very personal view I have on whether or not to have treatment in the future. This view wasn’t brought on by recent events but was, as many of you know, also documented in my book. I always said I would have treatment once and never again. I have received many hurtful replies to this post that have upset me deeply. I hope the intention of the post is no longer misunderstood. With love xxx

—–

Since I was discharged from hospital a couple of days ago I’ve been think and I’ve come to a firm conclusion…I’m done…let me explain.

When I went into hospital on Friday 29th December I had a bit of chest pain. I wouldn’t even say it was significant chest pain. It was just there. All.The.Freaking.Time. Instinct, however, took over, as it so often does for me, and I found myself heading to a&e. After several hiccups, including my notes being lost and the staff thinking I’d already been seen, I was eventually seen.

When I was seen the Dr’s main concern was my heart. An ECG (heart trace) was done – all fine. Blood pressure checked – low. Pulse checked – high. And then they listened to my chest and everything changed.

‘Your breathing capacity on your right side is reduced,’ came the worried response of the Dr caring for me. ‘We are sending you for a chest X-ray.’

So, off I went like an obedient child. I was taken on the hospital bed because, despite the fact I had run and done yoga that morning, someone with a reduced lung capacity isn’t expected to be able to walk. Someone….not me.

Moments later I was told that I had fluid on my right lung.

‘No, no, no,’ I tried to explain. ‘That’s just scar tissue. It was there at my last CT scan. It’s totally fine.’

The Drs exchanged a look. ‘Would you like to see your X-ray?’ They asked.

I wondered over with them to look at their computer.

‘Oh, fuck,’ I whispered as I gazed at the screen. Staring back at me was an image of my chest; 2.5litres of fluid nestled beneath my right lung and pushing it up under my collarbone.

‘So, it’s not the scar tissue you saw.’ My dark sense of humour reemerging.

‘No,’ replied the Dr. ‘It’s fluid. A lot of it.’

They explained that they needed to admit me. That I needed more tests and a chest drain.

‘You’ll be in for a while.’ They explained. So, my husband left to get some sleep in preparation for what lay ahead (it was now 1am) and I lay on a hospital trolley in A&E until about 3am. I was then taken to the admissions ward. It was mayhem.

The ward was so overrun with patients that many were sleeping in the corridor in chairs. Seriously! The staff were clearly overwhelmed by the situation. It was heartbreaking to see, not just for the patients, but for the staff. How are they expected to provide a standard of care in these situations?

My trolley was wheeled to the back of the ward and I was left in the corridor. No one told me what was happening. I wasn’t introduced to any staff. I was just left.

‘Fuck this.’ I thought.

I got off my trolley and went over to a staff member and introduced myself. I asked what was happening.

They started to apologise, telling me that the ward had been like this for over a week.

Over a week?! Seriously, how are staff meant to provide care in these circumstances? I took their hand and told them not to apologise because it wasn’t their fault. They brought me water and fruit. A human connection had been made in the chaos of the night. I wonder how many other patients had told them that it wasn’t their fault…

A few hours later a Dr came and took blood tests. They didn’t ask if I wanted blood tests. It was procedure.

‘What are you testing for?’ I asked, although no longer caring as I hadn’t slept for over 36 hours.

After a while I was taken to another ward, respiratory. Things were quieter here and I was given a bed in a bay.

Everyone around me clearly was very unwell with flu symptoms. I asked the nurse if they all had flu. ‘Yes,’ she replied.

I explained that I don’t have a spleen (and therefore a compromised immune system) and what precautions I could take. Moments later I was moved to a side room and advised not to leave it until my discharge. From that moment I was surrounded by four walls, my only solace a window that looked onto a corridor. There was no greenery in sight and I could barely see the sky. This wasn’t a room for providing care or promoting healing….this was a prison. Was I being punished?

Over the following few days I underwent many more procedures. In fact, in less than a week I had:

  • 5 chest X-rays
  • 2 blood tests (which took 7 attempts)
  • 1 cannula
  • 1 CT scan
  • 3 doses of morphine
  • A needle inserted into my chest cavity through my ribs to take a fluid sample (several attempts)…which led to air on my lung
  • 1 chest drain  (several attempts)
  • 2.5 litres of fluid drained from the space around my right lung
  • Paracetomol
  • Anti sickness tablets
  • Countless blood pressure checks (through the night, preventing sleep)

I was cared for my three consultants, one surgeon, countless nurses and health care assistants and junior Drs.

I stayed in four different wards.

I slept in five different hospital beds.

I, no doubt, cost the NHS £100s, if not £1000s.

And, whilst my care was exceptional and I love and respect each and every wonderful person who cared for me during this time. I am still done.

I am done with being medically treated as a condition not a person.

I am done with tests.

I am done with interventions.

I am done with ‘the standard procedure’.

I am done with the unanswered questions.

I am done with the needles.

I am done with the scans.

I am done with the X-rays.

I am done with not sleeping during the night.

I am done with getting lost in the system.

I am done with hospital food (or lack of it).

I am done with exposing myself to hospital acquired infections.

I am done with being away from my home.

I am done with being confined to a room and not going outside…for five days!!

I am done with having to tell loved ones that I am unwell.

I am done with loved ones seeing me in hospital.

I’m done with not spending the night beside my husband.

I am done with all of it.

I don’t want any more tests. I don’t want any more queries. I don’t want to be a fucking patient any more and, if it came to it, I wouldn’t want anything more interventions. No chemotherapy, no radiotherapy, no nothing. I. AM. DONE.

I asked one of the people who cared for me this past week what they would do in my situation. What they would do if, worst case, they were told next week (when I get my results) that they had a cancer recurrance. Would they have treatment? Knowing that it would only extend their life by a matter of months, at the expense of any level of quality of life. Or would they turn it down? Embracing a potent

‘I really can’t answer that.’ They replied, with the most honesty I’ve ever had to that answer. ‘No one can answer that unless they were in your exact situation.’


And that’s the reality. None of us know what decision we would make until we are faced with any given scenario. I didn’t know that I would have a positive attitude when faced with stage four cancer, but I do. I didn’t know that I would love my body more after the addition of my colostomy bag and all of my scars, but I do. 

This is my decision now, in the face of potentially life changing news, once again. My decision may change. But today, I am done.

Before I finish this post I’ll tell you what I’m NOT done with; I’m not done with yoga; I’m not done with running; I’m not doing with walks in the woods or on the beach; I’m not done with holidays; I’m not done with adventures; I’m not done with movie nights, cinema dates or theatre trips; I’m not done with weekends away; I’m not done with days out; I’m not done with seeing my friends or playing with the children in my life; I’m not done with time with my family; I’m also not done with my second book!

I wish you all a happy and healthy day.

Love and light, Fi xxx


6 Comments

I’m ‘that’ patient

I’m the patient who brings in her own glass water bottle, rather than use the plastic hospital water jugs provided. It has three crystals inside it and a stick of charcoal too to help filter the water. I pour the water they provide me in their jugs into it.
I’m the patient who brings her own flask, rather then uses the mugs provided. I also bring my own organic mint tea bags.

I’m the patient who has friends and family bring in all of her food because a. Hospital food has been proven in several studies to reduce your nutritional intake and b. They remain unable to provide me with vegan and gf food anyway (I’ve now been offered eggs, steak and ham?)

I’m the patient who will wear a hospital gown during a medical procedure but then, no matter the pain I’m in, will get dressed immediately after.

I’m the patient who washes, does her hair and puts on a full face of makeup every morning…even if it means washing my hair in a sink because they can’t let me use the showers because everyone else in the ward had flu (such as the case is this time).

I’m the patient who eats dinner with her husband every night (sometimes even a takeaway).

I am the patient who stores and administers her own medication, rather than waiting for the ‘drug trolley’.

I am the patient whose husband sits silently beside her until she falls asleep, watching box sets together on an iPad.

I’m the patient who has pictures of unicorns above my bed, created by some of the much loved children in my life.

I am the patient who does yoga stretches in or beside her bed each morning, even with a chest drain.

I am the patient who asks a continuous stream of questions until I am satisfied that I know as much as I can about any given situation.

I am the patient who sits on her bed and meditates each morning, finishing each session with a series of ‘Oms’, regardless of who is listening.
I am the patient who brings in her own blanket to sleep under.

I am the patient who will take the hand of a stressed and tired nurse and tell them it is not their fault and they do not need to apologise to me.

I am the patient who will ask a dr if they need to take a moment to rest in the chair beside my bed before they speak to me.

I am the patient who sees my team as people and accepts that people aren’t perfect, that they make mistakes and that they get emotional and tired too.

I am the patient who strives, in the same breath, to still be seen as a person too and, as such, I am always treated this way.

I do these things because these are part of my inherent values that make me who I am.

I do these things because they are part of my identity and what matters to me.

I do these things because, no matter how sick or sore I may be, this is still a part of my life.

I do these things because it is so important that the people who care for me see ‘me’ rather than a stage four cancer patient.

What is the result?

I have an active say in my care plan.

I am treated with respect.

I am listened to.

I am visited by members of my medical at the end of their shifts when they should be going home.

I am able to get to know my team as I would if we had met one another on the street. We become two people, not a medic and a patient.

It is so important that we do whatever we can to maintain our identity. When we are in hospital we become part of a large machine and we can so easily get lost. However, by taking small measures to preserve our independence we not only remind our medical team who we are, we also remind ourselves what matters most to us, what our values are and why we are striving to get well again.

None of the measures I take negatively impact the work of my medical team, and I would never do or recommend anything that does. These incredible people are doing everything they can to preserve the lives of others. Our only job is to help them to see ‘us’ rather than just another patient and, in return, for us to see ‘them’ rather than just another member of staff.

Last night the nurse who has been caring for me over the past few nights said to me, “You are going to be the one that stays with me. Your story and ability to still smile has really touched me.”
In that moment, there wasn’t a patient and a nurse having a conversation, but two women of similar ages whose lives had connected by chance.

It was a reminder that, at the end of the day, connecting with others on our path in a manner that is filled with compassion, love and kindness is all that really matters in this wonderful, crazy thing we call life.

In order to do this, all we have to do is see those who cross our path and strive to also be seen. In doing so we can connect in ways that are driven by love and light and help to create a more beautiful and magical world.

Wishing you all a day filled with joyous connections.

Love and light, Fi xxx