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Mental Health and Cancer

As you may know, this week has been Mental Health Awareness Week and I wanted to share with you how cancer has affected my mental health from diagnosis to now, just 9 months on, as well as some simple coping strategies I have put in place to help reduce stress and manage my emotions.

There is nothing quite like a cancer diagnosis to mess with your head. Even if cancer is suspected prior to diagnosis, nothing prepares you for receiving that news. It’s a life changing event for both the patient and their loved ones and most people will feel a mixture of shock and disbelief in those initial days and weeks.

I found the whole diagnosis experience utterly surreal. After leaving the hospital that afternoon, I had to have some really difficult conversations with loved ones and friends and whilst everyone fell apart around me, I remember just feeling really calm. In fact, I think I praised myself for handling it so well.

Hmmmm…….

In fact, what I was actually feeling, was completely numb and detached, both from the diagnosis itself and those around me.

For the next few weeks, I just kind of “got on with it”, and was very much on autopilot. I don’t actually remember breaking down at all early on. I may have done, but sat here, right now, I can’t recall such a time. Denial? Looking back now….definitely! But not fear.

Photo by Nikko Macaspac on Upsplash

For me personally, I felt more fear, anger and sadness as time went on. Maybe this was because I didn’t access the support on offer in those early days to help me deal with the emotional side of cancer. I was just purely focused on how to support myself physically in order to cope with the chemotherapy I was having. And that worked. Physically, I felt great!

But emotionally?

No, let’s just push evvvvverything away and pretend like it’s not happening.

There was no way though that I could continue like this.

What I now know, is that this isn’t something that simply requires you to pop off for a quick round of treatment, be told everything is now ok, and then return to your old life…..if only!!! This is an ongoing, new way of living and even if I did beat this, I could never go back to how I used to live and exist. And to be honest, after all the work I’ve done, I would never want to! Tearing about like some crazy thing, in a permanent state of heightened anxiety. I could never “shut down” the negativity or the fear and sleep was a luxury I had long ago accepted was just not for me.

Typically, my emotions varied widely in the first couple of weeks. I would have days where I felt angry and could last for a day or two where I’d feel irritated and snappy but over time, I began to recognise that behind this, was actually fear, whether that was for an upcoming scan, test results or fear in regards to being forced into a situation where I had to face my own mortality. Then I may read something really positive about someone who had healed from their cancer and so I would be on an optimistic high. Fast forward a few more days, and I may feel calm and relaxed, having “accepted” my diagnosis and predicted early exit from this life. Then anger, then fear, then gratitude for waking up each new morning….

….and so on, and so on.

“My dark days made me strong. Or maybe I already was strong and they made me prove it” – Emery Lord, When We Collided

As if dealing with cancer wasn’t enough, and at a time where we all felt such isolation due to the global pandemic, I tested positive for Covid just after Christmas. I felt so exhausted (probably from the chemo and festive stress) that to then know I was also fighting Covid, increased my fear ten-fold. Surely my body can’t cope with both??

But it did, and pretty well too.

It was my head that couldn’t deal with it all and I broke, literally ended up on the floor, great big, heaving sobs.

I had to accept that investing into my mental health was as important in this as my physical.

I had learnt some time previously that stress causes cancer to spread as well as wreaking havoc on your immune system but hadn’t taken the time out to look at stress reduction, too wrapped up in diet, exercise and supplements. Then I signed up for Square 1 course, available through Chris Beat Cancer and in one of his videos, he states that you can make all the lifestyle changes you want but if you don’t have a grip on your stress levels, you can forget making a good recovery.

This was a turning point for me. I decided to try meditation again, something I previously struggled to commit to. I am by design, a very restless person and have constantly struggled to switch off and sleep at night. On the recommendation of friends, I tried several types of meditation and rarely completed one. Luckily, I came across some Deepak Chopra guided meditations available through FitBit and because they were anything from 1-20ish minutes, I stuck with it….and loved it!

Yoga Nidra (click on link) was also incredibly useful for helping reduce all the chatter in my head, reducing my heart rate and increasing the amount of restful sleep I got.

Once I found what worked for me, I increased the time I spent meditating. Sometimes I still struggle to relax, especially since starting my new treatment which can make me really fidgety. But, I stick with it as it is a major part of my healing now but at the same time, if I am unable to do this, that is fine and I don’t beat myself up over it.

If you haven’t looked meditation (of any kind) before, I urge you to try a few. I have noticed a huge difference in my mood, feeling a lot calmer and have developed the ability to take a step back when I recognise my fear or anger surfacing before reacting negatively.

Depending on the situation and severity, of course, this is not always possible. Humans are emotional beings and the mind is a complicated thing.

Looking after our mental health is as important as looking after our physical being, and never more so than when you are coping with the trauma of cancer. This week, I began looking at things I’ve put in place to help me relax and reduce stress. I have an ever-growing list of ways that I find helpful and you might find it a good idea to jot your own down as it’s easy to get caught up with the many worries that come with this. At times, I felt utterly overwhelmed with them, one concern turning into two, three, four more etc. I needed to distract myself from them before they consumed me.

Photo by Simon Rae on Upsplash

Here is a short list of what I have found works for me:

Gardening – I have always been interested in gardening but just assumed this would become a hobby for when I retired. Then, like a lot of interests I intended to get involved in later on in life, I thought “why wait?”

Walking – Never underestimate the power of a good walk. I have several musical playlists depending on my mood at the time, and if possible, like to take myself off for a few miles.

Which leads me nicely onto –

Music – Whether I need energising, my spirits lifting or my mind quieting down, believe me, I have a playlist for it all.

Acupuncture – This was a late, and surprisingly pleasant edition to my stress management plan. The liver is believed to store emotions such as anger and resentment, so as this organ took a hard hit from cancer, I took myself off to have this “energy block” released. I had no idea that acupuncture could help in this way but I always found myself really calm and as if something has “lifted” afterwards. Reiki is next on my list.

Writing this blog – This way of journaling has been a wonderful outlet for me. I can look back and reflect on many areas of this journey.

Reading – For me, there is NOTHING quite like escaping into the pages of a good book and I don’t think I have ever read so much since being diagnosed. I quickly became part of my nightly routine to prepare me for better sleep, and it really does help me to switch off and rest.

Baths – I am most definitely a shower kind of girl and although I have always loved the idea of a nice, hot, relaxing soak, baths have just never been my thing. I’m either bored, too hot or too restless….or all 3. However, I learnt to love and appreciate the humble soak in the early days after my diagnosis when I was trying to address my lack of sleep issues. What I found was not only did it help ease some of the pain I was experiencing but also gave me some much needed time out, which, due to being in lockdown with the family, I rarely got.

Which is going to make my next one sound contradictory –

Spending time with family – I don’t mean just being around each other, I mean real quality time. I have a whole new appreciation for laughing, especially with the children. These moments are so precious and sadly, taken for granted.

Learning how the mind and emotions work – I genuinely find this relaxing. I have waded through a lot of books, articles and videos on this complex topic, in particular with regards to trauma and gaining a better level of understanding has helped me identify triggers and also how to deal with them better.

Despite all of the changes made, I still haven’t accessed counselling, but it’s on my to-do list. Talking to friends and family is helpful but having a professional who is not emotionally attached to you, really gives you the opportunity to vent your fears, anger, sadness or whatever other emotions you are feeling without judgement and from someone who can advise you on coping strategies of your own.

So, that was a pretty long winded account but so far, I have learnt the following:

  • You will have good days….enjoy them!
  • Equally, you will have bad days, no matter how positively you try to approach this….accept them and be kind to yourself just as you would a family member or a friend dealing with this.
  • If you are on social media, connect with other people living with cancer or their families. Facebook in particular has countless support groups. All you need to do is search your cancer and see what pops up in the results. Likewise for any other topic you may be interested in.
  • When feeling overwhelmed, take time out. Go for a walk, get a bath, call a friend or simply get into bed and have a snooze for a bit.
  • Emotions will change continously throughout this. I am now able to recognise when I’m slipping into a negative mindset and can lean on my self-care “toolkit”. Sometimes, nothing works, and that’s fine. I just accept it for what it is, sit with it knowing that things will (and do) get better.

Below, I have added a couple of links you may find useful.

https://www.macmillan.org.uk/

https://www.pennybrohn.org.uk/

Whether you are newly diagnosed or have been living with this for a while, feeling desperate or tackling this with a positive mindset, cancer is hard, especially one such as Cholangiocarcinoma, where, we are told the odds are so against us. You will, no doubt flit from one emotion to the next in the shortest space of time. Lean on others, get emotional support and find ways for you reduce your stress burden.

As always, I am only an email away.

Much love and strenth,

Megan x

Gratitude In Cancer

Almost 2 weeks ago, I posted about how difficult I had found the previous couple of months. No matter how positive and determined I tried to be in my resolve to tackle this cancer, even my strong spirit came close to breaking.

Right now, it’s hard for me to believe that this was so recent. On 29th April, I finally began a new treatment, a targeted therapy called Pemigatinib, and the effect on me and the debilitating symptoms that had consumed me no matter how I tried to rise above it all, was almost immediate.

But, although I am truly grateful to finally be feeling more myself again,that isn’t the reason for this post…..that’s just an update and I will post soon about this treatment and how i’m finding it as time goes on.

Photo by Nathan Dumlao at Unsplash

As I have mentioned before, I decided early on in this “fight” that I didn’t just want to rely on standard treatment and spent a lot of time researching the benefits of nutrition, exercise, supplements, stress reduction, repurposed drugs as well as alternative therapies found to be beneficial to cancer patients, such as IV-C infusions, oxygen therapy and hyperthermia treatments.

Although the nutrition, exercise and stress reduction methods such as meditation were relatively easy to implement into life, the many supplements recommended, repurposed drugs and alternative therapies are expensive and unfortunately, the bills still need paying, so these were just not an option for me. I made the decision to focus solely on the nutrition, exercise, supplements and meditation.

And this was fine to start with. I was lucky to tolerate the chemotherapy well with minimum side effects and showing a good response to treatment with scans showing shrinkage in the tumours and because of that I was able to eat well and get out for my much loved walks.

A lot of my friends and family were aware of my wish to tackle cancer from all angles and soon after my diagnosis, a very dear friend, Emma, suggested setting up a Go Fund Me page in order to get me access to these alternative therapies. I had been mortified at the time, embarrassed that I would need to rely on the generosity of other people for this to be an option and so refused whenever the subject was broached.

However, when my treatment ended and my health began to decline rapidly, the fear crept in and when my friend asked me to consider this again, I agreed for her to set one up.

I don’t know what I did expect but it certainly wasn’t what occurred and in a very short space of time. People began to donate and share my story so quickly, we were both left completely gobsmacked. The “target” set was reached within 24 hours and has since surpassed this. I can’t tell you how much it means to me that thanks to peoples kindness, love and generosity, I am able to access these additional treatments and give me the best chance of controlling the cancer and buying as much time as possible to spend with my children, friends and family.

But, what has completely blown me away has been the messages of support from people, even complete strangers. I have spent much of the time since, a blubbering and emotional wreck as messages continued to pour in offering support, encouragement and love. It’s given me the opportunity to connect with old school friends, family members and new people, all wanting to help and it has been completely overwhelming.

It’s been a tough year for everyone, many losing loved ones or unable to visit sick family members due to Covid restrictions. Many have lost their jobs and businesses have either folded or have left owners in considerable debt.

And yet……STILL people want to help.

And HAVE helped.

“Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world” – Desmond Tutu

After a period of extreme pain, fear and vulnerbility, this support has reignited the fire in my belly and resolve to invest everything I have into my healing and to live each day.

I cannot convey just how truly grateful for the compassion and kindness shown towards me, not only recently but from the start of this chapter in my life.

I hope you or your loved one has support and love around them.

I am always here for anyone struggling, needing or wanting someone to talk to.

Much love and strength,

Megan x

Food As Medicine

Have you ever looked into the role food plays when living with cancer?

Early on in my cancer journey, I struggled with eating. Of course, cancer will play havoc with your appetite but for me in these first weeks after my diagnosis, I knew it was psychological. Shocked, scared and stressed, I struggled to manage even the smallest of meals. After voicing my concerns with the nurse, I was advised to eat calorie dense foods such as ice cream, chocolate, meal replacement shakes, full fat milk and cake. To substitue double cream for milk in my tea and coffee. Sounds pretty tempting right?

But, noooooo…….wait a minute!!!!

A chance comment from a fellow cholangiocarcinoma warrior I had connected with on social media changed EVERYTHING about how I decided to tackle my cancer. This young lady was advising me of the changes she had made and one of these was cutting out all sugar as cancer cells use this as their main fuel source.

What followed was months of intensive research into the role food and nutrition play when dealing with a cancer diagnosis. This is a very complex subject with many conflicting information even from those advocating and promoting the benefits of good nutrition. I have waded through just about every book, YouTube video and relevant, popular websites imaginable as well as from several Facebook groups created for cancer patients that encourage a natural approach to healing by ditching processed foods, high sugar, red meat and dairy produce in favour of a vegan, plant based diet. Raw vegetables, fruits, some grains, green tea, herbs and spices feature heavily in most of what I have looked into and now I totally understand why so many cancer patients, myself included, turn to food as an additional weapon in their fight with the Big C.

Photo by Alexandr-Podvalny at Unsplash

By the way…..unless you are incredibly fortunate, don’t expect information or even encouragement from your oncologist in regards to nutrition. You are more likely to draw a blank expression or even discouragement as they focus solely on you getting enough calories and not losing weight. Not their fault or because they don’t care, they are just not trained in this area.

Like I said earlier, this is a huge subject and for me to whittle it down into a few paragraphs as an overview is near impossible……believe me, I have tried!

You will, though, find on my Useful Links page, some links (no surprise there) for amazing websites that have years worth of knowledge and information on this subject, including Chris Beat Cancer, How To Starve Cancer and Eat To Beat. I encourage you to delve into all these sites as they are incedibly informative. They are ALL excellent.

“Let food be thy medicine and medicine be thy food” – Hippocrates

Probably my favourite book has been from world renowned doctor, scientist and angiogenesis expert, Dr William Li. He wrote the highly successful book, Eat To Beat Disease (click on link to find on Amazon)

The book is pretty heavy going but not difficult to understand. You may find it easier to hear him speak first before diving straight into this read. He can be found on countless YouTube videos and I promise you, you won’t be dissappointed. Just to get you started and to save you searching, I’ve popped two below. The first is actually from back in 2010 and gives an overview of his work/approach but I have also added one from an interview/talk he gave to The Cholangiocarcinoma Foundation. It’s an hour long but goes into much more detail and also features a Q&A section at the end.

I hope you find some useful information to ponder on.

I would like to take this opportunity to say that although I personally think making diet changes plays a huge role in tackling cancer, whether that is to boost immuntiy, target cancer stem cells, use alongside standard treatment to maximise it’s effectiveness or purely to increase energy levels and feel better, I do appreciate that not everyone wants to eat this way, especially if eating itself is a struggle. For myself, the last couple of months have been incredibly difficult and I was lucky to manage even a few grapes some days, which left me feeling incredibly weak. In an effort to regain some energy, I did eat certain foods that probably aren’t ideal but you have to do what’s best for you or the person/loved one you care for. Do whatever is best for you!!!

Much love and strength,

Megan x

Getting through those dark days

I can’t tell you how glad I am to say goodbye to these last few weeks, which might sound like an odd thing to say when time is against me and should be treasured but it has, without doubt, been the hardest I’ve had since my diagnosis. Both physically and emotionally.

Halfway through March, and midway through my 3 month treatment break, I started to feel the familiar pain in my liver area previously controlled by the chemotherapy I was having. Chemo, if tolerated well, will actually help manage a lot of the symptoms and for me personally, it was an absolute godsend in that respect.

Then I began to experience the familiar pains I experienced prior to diagnosis, in my lower back, left hip and leg. I began acupuncture at this point and to be fair, it really did help ease this discomfort, if only for a few days.

*Acupuncture is definitely a beneficial therapy that I will be continuing with so if you haven’t tried this before, it may be worth considering looking into it further as a way of relieving symptoms from both cancer and treatment.

At around the same time, my appetite not only dwindled, but completely disappeared, leaving me weak and nauseous.

My much treasured and energetic 3-4 mile walks, were quickly replaced with a stooped shuffle around the house. The dramatic and swift decline was frightening, not only for me but for my family also. I did something I swore I wouldn’t….let the fear engulf me. I lost interest in just about everything. I no longer watched inspirational videos to encourage me in my cancer healing. I stopped reading informative books to boost my health and I struggled to be around anyone. I just wanted to be left alone.

Obviously, low times happen to everyone and if you are dealing with a cancer diagnosis, are an expected part of the journey. I’ve had many low days, I accept that they will happen and I try to be kind to myself, knowing that better days will come. However, weeks of relentless pain, being confined mainly to the house/sofa really took their toll and I began to fear they would never end…in fact, at one point, at my lowest, I wanted it all to end.

The pain, the fear, the weakness became too much.

Thankfully, as the sun and warmth appeared, so did my spirit. My appetite picked up and although I am still struggling with the pain, I found amazing support from my GP, who spent plenty of time with me to go through a pain management plan, a thorough examination, an explanation of what is causing the pain as well as my concerns over the “care” I am receiving from my oncology team (that’s a story for another day) offering to act as my advocate, corresponding with them should I need her to. I left the surgery feeling elated, confident and with some new level of control.

I’m due, finally, to start a new treatment, Pemigatinib (sold under the name of Pemazyre) in the next few days and hopefully this will help blast the new, aggressive cancer cells that have recently been found in my liver as well as all the others and I can start to feel more myself again. (post on Pemigatinib to follow)

One thing that I did find useful during the last few weeks was meditation and if you are struggling right now and have not tried this, I really do encourage you to try. It took me a lonnnnng time to “get” it and if you think it’s not for you, do stick with it. There are some amazing guided meditations out there and I will be adding a page, eventually, of ones I have found really useful, whether that is for reducing stress, helping you to sleep or helping you to adopt a positive mindset….and more.

If you are struggling, feeling lost and/or fearful, it’s completely normal. Be kind to yourself. Access support, whether that is from loved ones, your doctor, counsellor or an organisation such as Macmillan Cancer Support

Hopefully, for me, the tide is turning!

How are you or a loved one coping?

Are you struggling?

What have you found helpful when dealing with the low times?

I would love to hear from you.

Much love and strength

Megan x

Repurposed Drugs – Another Option in Cancer Treatment

Very early on after my cancer diagnosis, I read an incredible book by Jane McLelland, called How To Starve Cancer that marked a defining moment in my cancer journey and the way I looked at treatment. (link to website on the “Useful Links” page) Jane used a combination of diet, supplements and repurposed drugs resulting in her beating a terminal cancer diagnosis.

It was because of this book, that I first became aware of repurposed drugs and their benefits for people with cancer. Repurposed drugs are those prescribed to treat a different illness/disease but are known to have benefits for another. Sadly, and in my opinion, wrongly, these drugs are not prescribed for cancer patients despite the well documented anti-cancer effects, as there are no financial gains for the large pharmaceutical companies who have produced them (I’ll leave you to look into the politics of it all)

Care Oncology Clinic based in Harley Street, London, was born to bridge this gap. During my research into cancer treatments and especially after reading of so many cancer patients successes with the protocol, I knew this was something I wanted to implement in my cancer treatment.

How Does The Protocol Work On Cancer Cells?

The four prescribed drugs target the metabolism of cancer, depriving cells of the fuel and nutrients needed to grow and spread further.

The Care Oncology Clinic Protocol consists of 4 drugs:

Metformin – used to treat type II diabetes

Doxycycline – antibiotic

Mebendazole – worming agent

Atorvastatin – lowers cholesterol

I had always intended to go to Care Oncology Clinic, never doubting the potential effects their protocol could have for me, but as I had seen such success with the chemotherapy, supplements, dietary and lifestyle changes I had made, became somewhat lackadaisical with including this into my treatment.

However, as I have mentioned in my last couple of posts, my 3 month break from chemotherapy hasn’t gone quite how I envisaged so far, experiencing pain, fatigue, and a loss of appetite, leaving me feeling overwhelmed with fear.

I had to do more in order to get back some level of control again.

After sending various medical reports and information off to them, I had my initial consultation Thursday, via Zoom, with a wonderful oncologist, who, reassuringly, has a strong background in mainstream oncology. He was so friendly, incredibly informative in regards to the science behind the protocol, and most importantly (for me, anyway) extremely positive.

Once the consultation was over, I left the meeting feeling really encouraged that it was the right decision to access their support.

The whole process is incredibly fast and I am expecting the drugs to be delivered Monday.

I have also found other areas positively affected as a result of their involvement in my care (and this is BEFORE i’ve even got started!) My appetite has increased (thankfully), my sleep has improved and my determination well and truly restored.

As I am not always the best at explaining things, and for more information, I thought it worth adding this link to Care Oncology Clinic:

Love and strength,

Megs x

“Live” with cancer

As I wrote in the previous post, it’s been a difficult couple of weeks, full of fear and pain. During this time, I thought the fear of a quick deterioration would kill all hope and break my spirit.

It’s this part of cancer that sucks for me.

Thankfully, the pain is easing somewhat and I’ve finally had a couple of decent night’s sleep.

During last night’s bath, I took some time to reflect on the last 8 months. So many days get lost or roll from one to the next when you are fighting cancer and every now and then, I like to take time out to think about how far I’ve come, what’s worked, what hasn’t and what lays ahead of me.

One thing that struck me was how, from the start of this, I have always been determined to live. Like most people, I have a long list of things I would like to see before I depart this beautiful planet of ours. Watching my children grow, flourish, get married, grandchildren and to be there for them when life’s obstacles get in the way. There are so many places I want to visit and goals I want to achieve. Goals that seemed so unobtainable BC (before cancer) but now, with a high level of gratitude for being alive and a new found confidence in myself, completely doable.

But, I couldn’t help feeling I was stuck in no man’s land.

In my planning for the future, for when I “beat” cancer, I forgot something….

I’m living now

What if I do succumb to this illness? Will all of my time since diagnosis be spent planning for a future I may not see?

Today….right now whilst typing this, I am alive and feeling relatively well.

Tomorrow, I will wake up to a brand new day, 24 hours to “do” things. In the pain, the fear, the anger and the sadness post diagnosis, it’s sometimes hard to appreciate this when we are told we are facing a death sentence in x number of weeks or months as the medics tell us. However determined we are to beat this, often the fear gets in the way of enjoying being alive right now.

Of course, for those who are in a great deal of pain, or who have made peace with their predicted fate, then getting out living may either not be physically possible or not something they desire. And this is fine. Everyone is entitled to deal with and feel how they wish.

So, although Covid restrictions are (still) putting a spanner in the works in terms of places to visit and loved ones to see, I plan to live for today.

However small, I will DO something every single day that makes me happy. For those days where I’m consumed with fear, I will watch something that makes me laugh. On days where I feel invincible, I will head on out and walk in some of the breath-taking countryside Yorkshire provides for us.

“What day is it?” asked Pooh.
“It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.”
― A.A. Milne

Love and strength,

Megs x

Set Back

Hey everyone.

*Warning…..not a positive post I’m afraid, but it’s been a difficult couple of weeks.

Last Monday, I received the news that my CA19-9 tumour marker has shot up to 1262 and I have only now been able to write about it as my mind has been all over the place. This is because this number is only 30 away from my initial reading on diagnosis back in August of last year (2020)

I had a small rise back in January but other than that, my tumour marker has consistently reduced since diagnosis, which was so encouraging. No wonder I was so shocked with this latest result.

What is a tumour marker?

Some types of cancer produce chemicals that can show up in the blood on a blood test. These chemicals are called tumour markers. These will have different names depending on where the cancer is.

CA19-9 (carbohydrate antigen 19-9) is associated with the following:

  • Bile Duct Cancer
  • Colon Cancer
  • Stomach Cancer
  • Pancreatic Cancer.

CA19-9 is used as a diagnositic tool in diagnosis and also used to monitor treatment. The normal range for CA19-9 is 0-37. Throughout treatment, these are used to give an indication of how successful chemo/radiation etc has been. If the munber reduces it could be that you have responded well to treatment and could show tumour shrinkage. A rise could mean that the tumour is growing or treatment is not successful. Sometimes, levels may stay the same and this could mean your disease is stable. (This is a positive even if a little dissappointing at the time)

Although I had expected to (but hoped not to) see a rise of some kind now that I’m on my 3 month break from chemotherapy, I definitely did not think there would be such a sharp rise. Throughout my journey, I have been keeping a record of both tumour markers and tumour size so that when I’m feeling defeated, I can refer back to it and remind myself how far I have come. You can see from the diagram below why I may be feeling slightly alarmed right now.

I had been assured that during my break from treatment, I would be “closely monitored” and should there be a deterioration in my condition, there were options available. With this reassurance, I had felt confident in the care I was/am receiving but unfortunately, I have not heard a thing.

Maybe it’s purely fear but I feel pretty let down right now. I’m not one to constantly phone with every ache and pain, far from it, but I made a couple of calls last week regarding the pain I am in……advice: “try some paracetamol.”

Nothing like being made to feel as though you’re making a fuss over nothing to lift the spirits!

After receiving the news regarding the sharp rise in tumour marker, I genuinely thought I would be getting a call pretty quickly to arrange options.

I haven’t

As a result, I am losing confidence in the team I was so happy to have overseeing my care.

Down times well and truly suck BUT I know better days are to come……

Scan Success

If you have just been diagnosed with cancer, chances are you will have already had a scan or a couple to confirm diagnosis.

Scans are used to detect and monitor cancer and are used periodically throughout your treatment.

You may be required to have any of the following scans:

  • Ultrasound (It was this scan that initially showed a shadow on my liver)
  • CT
  • MRI
  • PET

They are an essential tool in diagnosis as well as determining how effective treatment has been, whether that is medical (chemotherapy, radiotherapy, immunology etc) and/or if you have chosen to take a more natural approach using nutrition, supplements and treatments such as hyperthermia and IVC.

Last week, I received the results from my latest CT scan. The anxiety and fear waiting for these can be utterly crippling, regardless of how positive you may approach your cancer battle.

(Sc)anxiety IS A THING.

Maybe you’re awaiting scan results right now?

I have had a few now and honestly thought I would be able to manage my feelings in regards to the impending results. However, as time drew nearer, I began to feel (and act) irritable, my usual upbeat manner all but diminished as the fear of what I would hear consumed me.

Am I doing enough to support my healing?

Am I deluded in thinking I can beat such an aggressive cancer?

What if I have missed something?

These questions and a LOT more went through my mind in the days running up to that phone call. The self doubt and fear was overwhelming.

I’m fortunate to have a lot of emotional support and everyone assured me that the results would be great, that I am a warrior and have done so much to help myself but I just couldn’t believe it. It had been a month since my last chemotherapy cycle and even for me, who would prefer to take the natural path as treatment, i was worried that without it, there would be a huge growth, especially as my cancer is classed as “poorly differientiated” which means fast growing.

I was informed early on that the gemcitabine and cistplatin, which are standard, first line treatment for bile duct cancer, has limited success. Like all chemotherapy treatments, they cause damage to healthy cells as well as the cancerous ones and also the organs, sometimes to such an extent that the patient dies from organ failure rather than the cancer itself. For someone who also has the heart condition Hypertrophic Cardiomyopathy, the damage chemotherapy may cause does play on my mind. Chemotherapy floods your body with free radicals which in turn, obliterates your immune system. The problem with this is you need a healthy immune system to help your body repair itself so it can help fight cancer.

Because of all this, I couldn’t WAIT to finish chemotherapy at the time but waiting for these results, I knew that the fear of my scan results showing a growth in my main tumour or metastasis elsewhere in my body would see me desperate to start back on it as soon as possible.

Maybe it was the blood tests I had prior to my last chemo cycle that showed an increase in my CA19-9 that had induced this fear….I haven’t been back for more since.

Eventually, the phone rang and the Dr informed me the scan showed mixed results. I shook so violently that I had to hold the phone in both hands.

There were more “spots” on my lung although this could also be down to having Covid in December

(Update: After a follow up phone call from my oncologist, they no longer think this is the case as i already had spots on the lung before i tested positive for Covid. They will continue to monitor these nodules)

BUT

My main tumour had SHRUNK by 2.5cm!!

Oh, the relief!!!!

This means that my main tumour is now 8cm. Still huge but it’s an overall reduction of 5.5cm in a matter of months.

Also, for the first time, there was a significant reduction in the enlarged lymph nodes.

How will I feel after the next scan? I’d like to think I will feel upbeat and positive but something tells me I will probably go through the same cycle of emotions as that’s exactly how it goes in this game called cancer.

And that’s fine. It’s normal.

Ebbs and flows.

How does waiting for scan results effect you?

Disclaimer. The content on this website is not intended for medical purposes. I have no medical training or background and posts are purely my experiences since recieving my cancer diagnosis. Information shared on this website is based on the research i have carried out. Always consult with a medical practitioner or other qualified health provider.

My “Chemo Holiday”

So, last week, I finally completed my first block of chemotherapy and was all set to begin my “chemo holiday”. This 3 month period is to give my body a rest from treatment and to recover. I had planned to post on the evening of my final chemotherapy cycle, full of excitement and relief, as it was something I had looked forward to since Christmas. The gemcitabine and cisplatin I receive, which is standard treatment for Cholangiocarcinoma, was beginning to take its toll and I longed to have time to heal my body in order to feel strong and healthy again.

I was lucky to tolerate chemotherapy pretty well. My main issue was a reaction to the steroids given before the chemo itself, resulting in puffy eyes and face. Other than that, some fatigue was as bad as it got, which given the amount of toxicity pumped into my body each time, I count myself very lucky.

*Note: If you experience a reaction to the steroids, you can ask them to administer it at a slower rate. Nurses gave me 8ml over 8 minutes (sometimes 10) and that seemed to lessen the effects.

The last couple of chemotherapy sessions were slightly harder going than before but as I was recovering from Covid-19 that’s hardly surprising.

So, when the nurse removed the last cannula I’d thankfully see for a while (my veins have all but given up!) I genuinely thought I would hop, skip and jump out of hospital. THIS was the day I had been waiting for. 

Feeling The Fear

But, over the next few days, I began to feel fearful of what could potentially happen during these 3 months.

What if my main tumour increases in size?

What if it spreads further than my liver and left lung?

Having made so lifestyle changes in order to support my treatment,improve my overall health and of course, beat cancer, the realisation that should there be a progression in my cancer during the next few months, I would probably have to accept that my chances of a longer life really are dependent on chemotherapy. This terrified me (and still does) as the damage chemotherapy causes could lead to organ failure and my immune system becoming so beaten down that i am left weak and at risk of all kinds of infections.

I have put so much time, effort, money and hope into the alternative and natural approach to treatment that the fear it may all be for nothing became overwhelming.

It took several days of reminding myself why I decided to tackle my cancer from all angles and thankfully, the fear began to subside and my faith restored. I realised it won’t all be for nothing as i have, 6 months on from my diagnosis, felt healthier than ever before, especially in comparison to the last 10+ years.

This, as i am learning, is yet another example of the ebbs and flows of this journey. Cancer does this to you. One minute you think you’ve got a grip on it all and next, you’re crippled with fear.

*Edit…..Two weeks on from this post and I’m feeling well and more focused than ever to use my “holiday” as an opportunity to heal. Not only to recover from the effects and damage undoubtedly caused by the chemotherapy and not only in an effort to deplete my body of cancer cells currently invading it, but to heal emotionally, from past traumas and the stress a cancer diagnosis has on you.

I see myself stronger, both physically and mentally. I see myself well.  

I can now, finally, look forward to making plans (once Covid restrictions are lifted)

……now, would somebody please pass me the sun cream?

I would love to hear your experiences during a break from treatment.

Are you or someone you know on a break from treatment?

What impact did your treatment break have on you?

The Power of Social Media for Support

When i was first diagnosed, i really didn’t know where to turn for support. All i had was a leaflet containing the phone number for Mcmillan (who are great, i might add). Due to the dire prognosis of Cholangiocarcinoma and the depressing “facts” and statistics i had come across, i felt even more alone and scared. What i was desperate to find, were stories and journeys of those who were facing the same diagnosis as well as a search for survivors (they are out there!) and how they had got to the ultimate goal.

I used Google to search for blogs but only came across one and unfortunately it was old and limited in content. So i decided social media was probably my best bet. For someone who has used Facebook for many years, i was surprised at how clueless i was when looking for support.

Eventually, i logged onto Instagram and in the search button, tentativley typed “Bile Duct Cancer” and “Cholagiocarcinoma”. Under “tags” i found lots of random photos from various people and organisations.

*Note: You will need to set up an account to view content on here.

As i was scrolling through some of the photos and posts, i saw one of a young lady with a big smile on her face and had to find out more about her. Like many cancer patients, she had used social media to document her journey, the ups and the downs but i was blown away at her positive attitude and the pure joy she found in everyday life. After commenting on one of her photos, explaining i had not long received my diagnosis and how happy i was to read how she was winning her battle with the disease, we began messaging and i cannot tell you the effect she had on me as someone further down the line.

She reached out to me, told me her full story and advised me on all manner of things, some of which hadn’t even occured to me right then. Through her initial support and guidance, i was able to research cancer (and boy did i do the research….it became a full time job!) and look into all areas of helping myself.

Through her support, i learnt that this was so much more than simply having chemotherapy or surgery. I had to do my part too and that was through nutrition, exercise, meditation and more….posts to come for all of these!

I had always been determined to beat this and was never going to just accept what i was told by doctors and she saw this determination (something she clearly by the bucketload) and her messages could not have been more encouraging or supportive, giving me the confidence to believe in myself, my abilities and my strength.

I have never met her (she is over the other side of the pond) but i absolutely consider her a dear friend…..and what’s more…..she has BEATEN cancer!!

Now, this is where Facebook really did help me. No longer using it to post photos of the kids or holidays, i found it an invaluable tool for connecting with others who were going through the same. Of course, there are some heartbreaking stories of loved ones who have passed and i never gets any easier to read.

There are though, some amazing groups you can join. I have listed these below. Some are purely for those diagnosed with Cholangiocarcinoma but i’ve also included groups that i have found along my journey so far as a result of my constant research into what i can do to help myself. These include a lot in regards to how nutrition can help and why as well as inspirational pages from people who have beaten their own cancer.

Nearly all of these have been by healing their bodies the natural way and there are some incredible stories on these which will give you so much hope and you will be amazed at what our bodies are capable of once we start truly looking after them.

  • Chris Beat Cancer
  • Cholangiocarcinoma Support Group
  • Healing Cancer Naturally
  • Gallbladder and Bile Duct Cancer Support Group
  • Jane McLelland Off Label Drugs for Cancer
  • Bile Duct – Cholangiocarcinoma – Cancer CCA

Those are just a few of what i follow but as you find out more and connect with others (if you wish to) you will find topics you can relate to or think may help in your journey. For example, although a vegetarian for over 30 years, i decided to go vegan after learning how dairy can actually feed this type of cancer, so i found some decent vegan based pages to join for inspiration and ideas.

I can honestly say that through these, and many more, pages/groups, my knowledge has grown no end and as a result, i no longer feel like i’m just exsisting, waiting for the inevitable to happen. I am in control way more than i ever thought was possible.

THIS is when social media does good

Megan x