Cancerversary – 1 Year Living with Cholangiocarcinoma

Photo by Stephanie McCabe on Unsplash

Today is as significant to me as so many other important dates each year.

Today marks 1 year since I was diagnosed with stage 3 bile duct cancer, also called Cholangiocarcinoma.

The start of the most life-changing experience to date….

…..and the best!

Yep, I really did just write “best”. I thought a lot about potentially upsetting some people going through this with that statement, as, understandably, any cancer diagnosis literally brings you to your knees and your life seems to crumble around you. It – and you – will never be the same again. It brings fear, confusion, uncertainty, and pain. And that sucks…truly, it does. I have felt them all.

And yet, during the past few weeks, I have spent much time reflecting on the past 365 days, and I can only sum it up in 1 word – gratitude.

In those first few weeks, I had 1 goal…..beat this, no matter what the statistics or doctors suggested. And for me, that simply meant getting through chemotherapy, and hoping it would shrink the main tumour enough to be operated on.

I expected suffering, both physically and mentally. I imagined the children constantly feeling scared and unable to get on with their lives for fear of how long I would be with them and how difficult it may be for them to see me in so much pain.

Then, I decided I needed to take responsibility for my own health and not just leave it up to somebody else whilst hoping for the best but accepting the worst.

What followed has been a journey of self-discovery, leading me down a path of contentment, gratitude, peace and happiness. Below, I’ll try to summarise (I do struggle with this, so I’ll apologise now!) the area’s I have learnt that complement this crazy ride called cancer.

Nutrition

Although I have always had an interest in healthy eating, I had no idea how important a role food would play when dealing with cancer.

If you hear one thing right now, make it this:

Cancer uses sugar as fuel to help it grow. Once cancer has marched on through the lymph nodes and to other areas, those cells use fat to grow and travel through the body. Look into this further so you understand exactly what is happening here.

Good nutrition can help you feel better in yourself, balance gut health (microbiome) thus improving your immune system and help you cope with any treatment you may be given. There are also many foods you can use, that also help kill off cancer cells and inhibit pathways to potential harmful fuels (see above)

I was encouraged very early on to eat foods that were calorie-dense; butter, cream, ice cream, cake, and meal replacement shakes. I imagine you have been also. The focus was on being able to maintain weight for treatment. There is NO WAY I would have any of these now, knowing what I do now, however, if you or a loved one cannot eat much, then I understand (and completely respect) decisions to have any of these.

Exercise

If there was ever a time I thought the pressure of exercising was off of me, it was after being diagnosed with cancer. Then, like everything else to do with this cancer, I looked further into it and guess what? Yep, it’s encouraged. Typical!

Cancer cells survive without the need of oxygen and knowing that patients generally have a low level of blood oxygen, potentially resulting in reduced mortality, it makes sense to exercise and increase those blood saturation levels. Increasing oxygen can also help with the effectiveness of some treatments such as chemotherapy and radiotherapy by pre-sensitising cancer cells.

Exercise can also have a positive effect on your mental health, decreasing depression and anxiety, as well as increasing energy levels. Depending on the type of exercise you prefer, some, such as yoga, can also help to reduce pain.

I find walking really helpful. I stick on a podcast, my favourite playlist, or an audiobook, and just go. It also gives me a positive “time out” to gather my thoughts in relative peace, without any distractions. Currently, I am walking between 3 and 4 miles, but if all you can manage is down the road and back, it’s something. I do understand and have been in a position, not to exercise, but if you can, do it.

Supplements

This can be an absolute minefield to navigate as there are so many websites and social media accounts promoting thousands of them, so do your research or speak to a professional. The right ones can replenish levels that are typically low in cancer patients, such as vitamin D, as well as support the health of certain organs and the immune system, and includes those believed to block pathways of fuel sources to cancer cells and weaken or kill cancer stem cells.

I do take quite a few myself, for all the areas I have mentioned above but will not add these in this post.

I would just point out that just because you read of something one person is taking, do always check that you are able to have these, and they do not interact with any medication or treatment you are receiving.

Meditation and Stress Reduction

My favourite! In the past, whenever I have ever been ill, it’s always been simply a “physical” issue. Take painkillers or antibiotics and wait for it to pass. Since my diagnosis though, I have learnt just how much stress can affect the body, and let’s be honest, receiving this diagnosis is going to send a person’s stress levels through the roof! Stress can cause cancer cells to spread, so finding ways to reduce levels is more than just beneficial to your mood.

I have written about my newfound love for meditating before, but it really does help so much and there are a ton of apps and YouTube videos with a huge variety, from helping to reduce stress, heal your body and relax you ready for sleep. I really do encourage anyone who hasn’t tried it yet, to start. For me, it took a while to find something that I liked, so just give it some time. Guided meditations help to stop your mind wandering, which I have habit of doing if it’s just music. I also started with just 5 minutes at first and now do a minimum of half an hour each day. I generally feel a lot calmer, and my sleep has improved no end.

Positive Mindset

Not always easy but I do believe it makes a huge difference overall. At the start of all this, I genuinely thought the whole process would be scary and difficult for everyone and I dreaded what lay ahead. However, this couldn’t be further from the reality of this past year.

You will find that there are many ebbs and flows to living with cancer. When I’ve had some great scan or blood results, they have left me feeling euphoric because that hope you cling on to so desperately, finally seems to be working out. The flip side to this, of course, is the crushing lows. For me, these were when I found out cancer had spread to my lung – then to both lungs, when new aggressive tumours appeared in my liver earlier this year, and when my tumour markers shot up from 187 to 4262. Each time this has happened, I’ve had a “moment”, let myself feel the pain and disappointment of such news, and then let it go. Honestly, that is how I have had to deal with these times. If I was to dwell on it and feel all that fear, for me personally, I know that it would quickly crush my spirit and eventually my body.

How I see it, is like so: I have cancer, it’s advanced and inoperable. That is just where I am in my life right now. So I can dwell on this and feel angry that I have to deal with it or I can use it as a way to change my life and to hopefully help others in some way. I chose the latter.

I’ve overhauled my lifestyle, take time each day just for myself, whether that is a walk, a nice bath, or some meditation. I use it to deal with past traumas and the subsequent feelings I have suppressed for so long. I have reconnected with old friends and have a new appreciation of all my friends and the incredible support and love they have shown me. I cherish moments that used to simply pass me by. I am truly grateful for each birthday I get to celebrate with my children, for each Christmas morning I get to spend with them….and everything in between. Without cancer, I would still be running through life, darting between work, kids, housework, and endless trips to the shops for supplies.

I would be feeling stressed out, and like the whole world was against me. I wouldn’t be looking after myself. I’d sleep poorly and feel exhausted because of it.

Right now, I am feeling great, but I also know just how quickly that can change and how, if you believe the statistics, life could be snatched away from me at any time.

So, although I am certainly not grateful to have been diagnosed with this, I am for all the lessons it has taught me. I am truly “living” now.

I’m doing everything that I can to support my health, maximise the effects of my treatment, and live life how it should be. I am no longer scared to make plans for the future. In fact, quite the opposite. I actively set goals and make plans. I visualise myself at the weddings of my children, holding my future grandchildren and write down all the places I intend to travel to and visit. I have made plans to meet friends, both new and old. Doing this is setting my intentions and confirming my determination to heal. It’s sticking two fingers up at the dire prognosis of this cancer and dissolves any fear. It gives me a rock-solid will to live.

I no longer merely hope that everything will be ok, I trust that it will.

I have written this next bit a couple of times before but for me, the turning point was when I switched my mindset from fighting cancer to needing to heal my body. The fear left me. I no longer saw cancer as an enemy that had invaded my body. It’s a symptom of a body that desperately needs help. My body and mind had been through a lot over the years, and when it became out of balance and my immune system could no longer work efficiently, I became sick. Now I am doing what I should have done many years ago. Look after me.

Am I deluded about what I am dealing with? Not one bit. But you have a choice how to deal with this, and for me, I wanted it to be a positive, not a painful struggle, for whatever time I have left. And it has turned out to be a huge learning experience for me. I finally know and love myself for who I am and have worked through past traumas, let go of guilt and resentment, and drawn a line under unhealthy relationships. I accept that I may not survive this, but for me, simply waiting for the end makes the whole experience so much harder than it needs to be. So, my focus is on living the best life I can now, with those who I love and care for and who I know feel the same about me. Death will eventually happen to us all. When? Who knows? I don’t fear death one bit, but I have had to work hard to get to this point.

This is much more to me than a cancer diagnosis, it is a complete life overhaul. And if I am not here this time next year, I will have had a couple of years living exactly how I wanted to.

Much love and strength,

Megan x

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