| Many of our followers on social media will remember Mary Huckle and her tireless campaigning for #metastaticbreastcancer awareness. This blog post is the last content she wrote for us, a year ago for Metastatic May in 2023.
Mary was diagnosed with breast cancer in August 2007 and with secondaries in July 2014. By sharing her experience and through her patient advocacy work with METUPUK she helped others in her position. Living with breast cancer for almost 16 years, 9 of those with metastatic breast cancer, Mary knew full well the effects on mental health. The ups and downs, and the stress and anxiety that goes with it. To remember Mary, and for some insights and tips on how to cope, please have a read. The last words with the “Sometimes… ” list are so heartbreaking. Life is so cruel and yes we have dark thoughts and are scared of dying. And we wanted to wrap her up and say everything will be OK Mary. Sadly we can’t do that but we opened our arms to support our fellow beautiful friend and if we could make it all better we would have… |
I didn’t really know what mental health was about until I was diagnosed with breast cancer. I’ve been living with the disease for almost 16 years, nearly 9 of those with secondary/metastatic. Long in the tooth, so to speak.
Cancer patients are advised to avoid stress and to take a more holistic approach to life. Yet the irony is that since my secondary diagnosis I’ve experienced more anxiety and stress than my cortisol levels can shake a stick at! But I still consider myself more fortunate than others in a sense. My job has kept me fit and healthy, even with a cancer diagnosis – my focus has always been on helping my clients, many with breast cancer. I’ve helped dozens to regain their confidence and fitness levels, before, during and after treatment. A sort of win win. I help them and they help me. This has shifted my focus and made me mentally resilient.
However, even the most tenacious among us have a degree of underlying stress. Bubbling away, ready to resurface at any time, and often unexpectedly. Stress, fear and worry are intrinsically linked. There’s the worry surrounding our loved ones, and how our diagnosis has impacted them. The impulse to love and protect our children in particular is hardwired. The constant fear of progression. The fear of your body failing. Living life with your heart in your mouth, getting scan results every three months. Some having to wait weeks for said scan results. Will my bloods be ok? What if my treatment doesn’t work? Am I running out of treatment lines? Why can’t I access that drug which might give me more time with my family? Why is it a constant battle with the system, and why do we have to self-advocate for better care? What’s this new pain? Uncharted territories aplenty when starting new treatments. Can I plan ahead and look forward to things? What if I’m dying? It’s overwhelming and utterly exhausting. We have to become experts in our disease, do the research, challenge and question our oncologists. Cancer can become a full-time job. All the aforementioned are just some of the worries. Cancer impacts each and every one of us in different and unique ways – careers, finances, medical menopause, marriage, relationships, sex, dating, and so on.
Let me throw in a couple of ironies. Fertility – a very pertinent irony of cancer treatment for many younger women is that it can save their lives while destroying the chance for them to create a new life. Scans – what we often have to fight for to monitor disease, but forever exposing us to more radiation, which is exactly what we don’t want!
Unfortunately, being thrust into this cancer world and being part of a community means not only facing our own mortality daily, but that of our friends as well. Young, old, men, women. Cancer really doesn’t discriminate. No rhyme or reason, but we grieve, we try to avoid thinking about our own mortality, and move forward despite the sadness and unfairness of it all. I’ve experienced so many friends dying over the years that I’ve almost become desensitised to it. Every time someone else dies, of course I feel sadness, but I feel anger and frustration too. Thirty-one British women dying every day should not be ignored. It’s a daily tragedy. Almost 1,000 every single month. If two jumbo jets carrying 500 passengers went down each month, I wonder how soon the matter would be looked into.
I must admit, I get a little narked at how we often say so flippantly that cancer doesn’t define us. This is so dependent on where you are with cancer at any given time. We might say that cancer doesn’t define someone who has finished primary treatment, but that same person may have PTSD and live with the constant fear of recurrence. Then there are those in the stage 4 bracket, whose treatment is working and quite often are well enough to enjoy a long and stable quality of life. These are the stage 4 thrivers and ‘cancer doesn’t define them’. You might not say that cancer doesn’t define someone who is at desperation point, whose diaries are crammed with hospital appointments, with zero quality of life, and who can’t just go and grab life for one reason or another. The same goes for those fast approaching end of life. A juxtaposition so close yet so contrasting. In the words of Shakespeare, ‘To be, or not to be’. It’s very much up to you. I think we need to be respectfully considerate of that.
So how do I cope? It’s a question I’ve been asked over the years. I might be perfecting the art of self-preservation. BUT. I don’t cope all of the time. As well as the resilient me, there is also this:
Sometimes….
I feel lost, isolated and afraid.
I lose confidence.
I feel sorry for myself and think ‘why me?’
I envy anyone still living care-free.
I feel guilty.
I lose sense of who I am.
I find it hard to plan ahead.
I hate myself for not holding it together.
I cry, especially at night, I cry myself to sleep.
I have meltdowns.
I have dark thoughts.
I’m scared of dying.
However, rather than suppressing these feelings and emotions, I’ve learned to accept them. They are part and parcel of my existence and part of a process which is normal for me. I let them pass over and through me. They can be as intense as a tornado, or like the whisper of a soft breeze.
Here’s some DIY therapy which might help you.
Try to not think too far ahead if you find that projecting into the future is frightening. On the other hand, planning and looking forward to something nice can give you a focus. It can motivate you, give you renewed confidence and empowerment.
Be mindful. Stay in the present and work through each day. Sometimes you might have to work through each hour or minute. That’s perfectly ok.
Writing is therapeutic. Transferring the busyness in your head onto paper will unburden you. Sharing your story with others also helps, and never think that your story is not important or relevant enough. Remember that what you share could also help someone.
If writing isn’t your bag, but your brain still works overtime, I liken all the thoughts flying around to bees. Mentally direct them all into their hive and don’t let them out.
Set your mental boundaries. Quit the people pleasing and saying yes to everything. Learn to say no!
Practice daily affirmations – speak them out loud. Write them onto post-it notes and stick them on your bathroom mirror. Repeat them every time you stand in front of it.
Go outside into a green space – nature heals in so many ways. Forest bathing is the best. This Japanese practice is a process of relaxation, known in Japan as shinrin yoku. The simple method of being calm and quiet among the trees, observing nature around you while breathing deeply can help both adults and children de-stress and boost health and wellbeing in a natural way. If you live by the sea, you’re also fortunate. Just saying. If you don’t live by the sea, you can still make the effort to escape there. One of the best calmers and healers for sure.
Exercise of any description is an antidote – just moving our bodies helps us, both mentally and physically. It can increase stamina, improve your confidence and build resilience. Exercise makes you mentally stronger. Period.
Any form of distraction is great – meet a friend, have coffee, do lunch. Take up a hobby. Stay busy basically.
Counselling or another type of therapy might help. It’s a way of burdening a stranger with your thoughts and fears, rather than your loved ones. Art therapy is brilliant and has been particularly helpful for me. Mainly because you can lose yourself in creativity without the need to talk. You don’t need any art skills, by the way. Another irony is face-to-face counselling – it can be extremely useful, but you have to regurgitate the past, feelings and emotions, and you might not feel like verbalising anything.
Read, dance, laugh, play – whatever! Just don’t spend too long on your own if you know that your mind will wander. Watch funny programmes and belly laugh. Read positive mental attitude books or listen to podcasts. You’ll be amazed at how these materials will help change your narrative.
One thing for sure is that whatever you have going on in your life, you have a community on social media somewhere. Someone or a group you can relate to. Find it. Abuse it.
Find your tribe. Raise your vibe.
Mary Huckle – METUPUK volunteer and patient advocate.