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

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

Cancer, Chemo & Covid

Ten months after the country entering the first lockdown, it’s likely that many of us will have now been affected one way or another.

For anyone who has sadly lost family members or anyone else close to you from Covid, I am so deeply sorry for your loss. For those of you who have been affected financially, whether that is through losing employment or having to shut down a hard worked for business, I pray for you that things will improve…..and they will!

We all know the strain our NHS has been put under throughout this crisis but it has broken my heart and frankly, left me completely baffled as to why cancer patients have had their treatment cancelled or affected. I count myself extremely lucky that although not diagnosed until August of 2020, when restrictions were lifted somewhat, my treatment and all appointments have continued.

I also count myself lucky not to have been personally affected by this dreadful pandemic UNTIL…..

…….I tested POSITIVE!

There is nothing like a cancer diagnosis to make you face your own mortality and although i have come to learn there are many ebbs and flows with this disease, I had pretty much got my head around everything, had a plan and was feeling mentally positive and physically healthy and strong.

Over the Christmas period, I had struggled emotionally ( see post….link) which knocked me sideways at the time. This was unexpected but I put this low point down to being physically exhausted.

Many cycles of chemotherapy (gem/cis) were taking their toll. I had not slept for more than a couple of hours per night for months and was also having to deal with a chemically induced menopause, apparently common in women receiving such treatment. I also am affected a lot by the steroids given on chemo days, leaving me looking bloated and puffy eyed.

At the end of Christmas Day, I noticed I was a bit sniffly and thought I was catching my daughter’s cold (not unusual given the time of year). My blood work had shown my neutrophil count was low, which made me more at risk of picking up infections, so I wasn’t surprised that I may succumb to our common cold.

However, by Boxing Day evening, I was sweating (but felt freezing) and just felt completely out of sorts. I put this down to the exhaustion that is cancer, chemo and Christmas but wasn’t overly concerned.

However, two days later, when my daughters kindly made dinner for the family, I was unable to taste raw onion in the salsa, at which point there was a collective “uh-oh”. As anyone going through treatment during this pandemic will know, I had to do my weekly Covid swab and the result came through 30th December informing me I had tested positive.

I was shocked and by that evening, completely terrified. I had made so many changes to my life in order to help me heal from cancer. I had done so much work, mentally, to deal with my diagnosis and then suddenly I was looking at the prospect of being wiped out by this. As I have small tumours on my left lung, and the virus attacking the respiratory system, I was overwhelmed by fear.

I now had what my friend called a “triple C Cocktail”

Now, due to the cancer and chemo, I really did think this would prove more than my body could tolerate BUT apart from a lack of smell/taste, I was extremely lucky to not experience any more symptoms. Self-isolation actually proved to be a(nother) positive for me but that’s for a separate post.

Have you or anyone you know, had to cope with both Cancer and Coronavirus?

How did you manage?

Fingers crossed for a quick return to “normality”…….whatever that may be!

D(iagnosis)-Day

Being told you have bile duct cancer

Maybe it’s my age, but my memory is shocking! We all do it….go upstairs to get or do something, only to completely forget 13 steps later, busy ourselves with some pointless task, only to remember the second you get back downstairs what you origianally wanted.

But one thing that will be etched on my mind for the rest of my days, is being told i had cancer. Myself and Richard had sat in the waiting room, on chairs metres apart (due to socially distancing regulations) and i nervously scanned the room which was full of wall displays with Macmillan leaflets. I tried not to overthink this.

At this point, i had been given ultrasound, CT and MRI scans. These had shown a shadow on my liver. As scary as that was, i was certain i had a cyst or maybe at worst, a begnign tumour. After all, i felt fine. I was not ill at all, i was just experiencing pain.

We were called into a room where we sat in front of the Dr and a Mcmillan nurse. I should have guessed from the look on their faces that this was not going to be good news. I was right.

I was informed that the shadow was in fact cancer of the bile duct and it had spread to a prominent lymph node. I was also told that my cancer was already at stage 3 and inoperable.

I’ll be honest, i didn’t really take much in after that. I thought i had but reflecting on that appointment now, i really hadn’t. I do vaguely remember the conversation appeared to move towards prognosis at which point i really couldn’t take it. My brain just couldn’t process any more information. All i can remember, is holding up my hand in an attempt to stop them talking and said:

“Just tell me there is hope. If i don’t have hope, i have nothing”

The nurse simply replied, “there’s always hope.” What else could she have said? Richard was beside me, in bits.

We were asked if we wanted some time out in another room before going home, which we did and our lovely nurse talked us through some things (i have no idea what). I think Rich may have asked some questions…again, i don’t know what. It was the most surreal experience and reliving it here, is actually making me feel very emotional.

I only had one question; “how do i tell the kids?”