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

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