This is as much a mental journey as it is a physical one and I found a number of ways to help myself stay on track:
- I produced a spreadsheet to monitor my progress throughout chemotherapy treatment and made a note of side effects at each stage so I became familiar with what to expect as my “normal”. (During chemotherapy, I made a note of the days my mouth was sore and found this usually followed a pattern each cycle and correlated with my immune system dropping lower). The following NHS app has been designed to make this process so much easier and I wish it had been around when I went through treatment: https://www.nhs.uk/apps-library/owise-breast-cancer/
- I kept a notebook to jot down all of my concerns to share with my consultant at each appointment to keep the meeting time efficient and to make sure I didn’t forget anything.
- I had a quote each week to keep me focused and tried to make a note of something good that happened each day – just simple things like a nice meal, a visitor, a country walk. Doing this helped me to remind myself of the good days on the days I struggled more. I also took lots of photographs when I went out for walks so I had visual reminders that I was still enjoying life despite having to jump through treatment hoops.
- I was very guarded throughout treatment about who I told because my own positivity felt fragile and I couldn’t cope with anyone saying anything negative. My suggestion is: guard yourself, you have a right to protect your own thought space. Something I found very difficult to talk about was just how much the fear of death occupied my thought space and how much I became aware of my own finite existence but in reality I had a disease which could be treated, albeit no guarantees, but risk-wise if you consider I also drive a car and people die in accidents daily. I didn’t think of that in the same way and I think it’s because when I drive I still *feel* I have control, whereas with a disease you feel that has been taken away from you. I could just as easily get hit by a bus whilst distracted by reading my diagnosis brochure – so always read instructions carefully! Pun aside; the distraction of severe anxiety can make you a little more careless and accident prone.
- I went on the internet and researched all of the statistics and bad things which could go wrong. I recommend against this as it does nothing to help you and sends you down a wormhole of bad thoughts. Time can be better spent on reading inspirational books, blogs and articles on healthy living and how to prepare for treatment.
- I found music very therapeutic, either for making me feel like I had a dedicated sympathiser or for lifting me back up again. Sometimes rock music worked well and sometimes gentle music. When my mind was running away at full speed like a runaway train, I sometimes needed faster music to move and resonate with me and then I could slow down again at the earliest opportunity. Guided imagery meditation (available on Spotify etc) can take you to a peaceful space and is worth a try. Here are some more grounding techniques for helping with severe anxiety: https://www.healthline.com/health/grounding-techniques
I refound my love of art and in 2020 launched my Thoughtful Bugs range to help others going through breast cancer. My Thoughtful Bugs book is available on Amazon. It’s ideal to pick up when you’re overloaded with clinical cancer life and want a gentle artistic escape. The thing I love about bugs is that they bring you closer to nature and are freely accessible for everyone to engage with.
Allow yourself to continue to be in mental health treatment for at least 6 months after your physical treatment ends. Make mental healing part of your treatment plan. This could include counselling, cognitive behavioural therapy, equine therapy, art therapy, yoga and mindfulness etc. Here’s a guest blog I wrote on mental health for Sara at “Ticking off breast cancer”, a blog which has lots of links to other useful info too. Here’s an article I wrote for Mission Remission on coping with negative life events after cancer.
Not everyone is comfortable with the war-like words associated with cancer because they feel it implies you have a choice about winning or losing against a disease which doesn’t play fair. I am comfortable with the war-like word associations because for me the battle is a mental one and a mental battle which I fought daily, regardless of what happened to my physical self. “Metasteses of the mind” is an anxiety battle and I acknowledge that and live with it mindfully and I no longer let thoughts of cancer steal my joy. I think it’s taken enough already. I’ve been helped tremendously through equine therapy. This therapy was great as it got me into nature which made me feel I could let go in a way I couldn’t in a clinical environment. Being with horses was very comforting for me and they are such sensitive beings. I continue to take CBD oil daily for anxiety too which I buy from here or here.
A really funny story which has been a comfort to many is Mountain Lion (Google “Mountain Lion Cancer”) which is posted on various online sites.
This is a lovely blog which really sums up the breast cancer journey in many ways, written from the perspective of a nurse who developed cancer herself: https://anticancerclub.com/inspiring-stories-from-cancer-survivors/dear-every-cancer-patient-ever-took-care-im-sorry-didnt-get/
Here are some of my favourite quotes which helped me mentally:
Fear is a reaction. Courage is a decision.
You don’t have a right to the cards you feel you should have been dealt, you have an obligation to play the hell out of the ones you’re holding
And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.
Be gentle with yourself, you are doing the best you can.
Something will grow from all that you are going through and it will be you.
Hope means we must trust and wait for what is still unseen.
I am learning to trust the journey even when I don’t understand it.
Believe in yourself and all that you are. Know there is something inside you that is greater than any obstacle.
Be strong enough to stand alone, smart enough to know when you need help and brave enough to ask for it.
Do what you have to do until you can do what you want to.
A little progress each day adds up to big results.
No matter how you feel, get up, dress up, show up and never give up.
Your scars are someone else’s sign of hope.
You may see me struggle but you will never see me quit.
Autumn shows us how beautiful it is to let things go.
Don’t look back, you’re not going that way.
What doesn’t kill you gives you a lot of unhealthy coping mechanisms and a really dark sense of humour.
Dost though love life? Then do not squander time, for that is the stuff life is made of.
Planning is an unnatural process; it is much more fun to do something. The nicest thing about not planning is that failure comes as a complete surprise, rather than being preceded by a period of worry and depression. –John Harvey-Jones
Disclaimer: I am not a medical professional. I do not claim that anything which worked for me would work the same for you. This blog is no substitute for the advice of your doctor. Always seek medical advice if you have any concerns. Always check with your consultant before taking any supplements. This blog is my personal journey and a journal of how I coped. I do not take any financial incentives from any products mentioned.