What is chemo brain for me? There was one occasion when a friend told me about an awful family situation that she was going through. Yet the next day I had absolutely no recollection of the conversation. Nothing, nada, the whole conversation just erased from my mind. (Maddie – I’m so sorry about this!)
I suffered really badly with chemo brain whilst having treatment: I have whole chunks of time that are completely erased from my memory. In retrospect, this probably wasn’t a bad thing given what I was going through, but still, there are long stretches of my life gone forever. Now, fifteen months on, it’s a long term effect that’s completely side-swiped me and continues to have a fairly big impact on my life.
While on treatment, I only made sense about 50% of the time. I’d drift off during a discussion, get side-tracked, and lose all of my words. I’d run out of steam on a conversation as I completely lost my train of thought. I’d repeat myself because I forget what I’d said to whom.
I now have a complete inability to do basic maths without a calculator and I regularly double-book myself for plans because I struggle to keep on top of my diary.
One day, when I couldn’t for the life of me remember the word ‘range’, I ended up describing it as a ‘sphere of influence’ as I tried to describe what I meant – I’m still getting stick from my kids on that one!
Since treatment, the effects have eased off a lot, and I am learning ways to manage it, but I still find it massively frustrating. Having always quite prided myself on the fact that I was generally fairly smart, I now feel stupid on a regular basis. It has rocked my self-confidence at work, because I feel judged when I can’t remember conversations or can’t string a coherent sentence together.
But I don’t want to get too ‘poor Emma’. Instead, I want to focus on taking control of this particular situation: looking at practical tips for handling our poor addled chemo brains.
First - Chemo brain: potential causes
Chemo brain is a phrase that refers to changes in memory, concentration, and the ability to think clearly after chemotherapy. However, whilst it was first linked to patients following chemotherapy, there have been cases where cancer patient who haven’t gone near a chemo ward still suffer from cognitive impairment. As such, doctors now think that chemo brain could, in fact, be linked to a variety of factors including:
- the stress and emotion generated by a cancer diagnosis
- the cancer itself
- cancer treatment such as chemotherapy, hormone therapy, radiotherapy, and some targeted drugs
- very intensive treatment such as high dose chemotherapy followed by a stem cell transplant
- side effects of treatment such as fatigue, low levels of red blood cells in the blood (anaemia), sleep disturbances or hormonal changes
Up to 45% of cancer patients report chemo brain, and changes can be noticed before, during and after treatment. Whilst side effects usually reduce within a year, it is not unheard of for them to be prevalent for many years post-treatment (up to 10 years!!). So if you are still feeling the effects long after finishing treatment, you are not weird or (as I have wondered/panicked about in the wee hours of the night) actually developing early-onset Alzheimer’s.
How I handle the brain fog
- My symptoms are definitely worse when I am tired or hungry – making sure I get a decent night sleep, rest regularly and eat well massively helps my cognitive function and keeps my chemo brain to a manageable level. It sounds silly, but we can all neglect these basic human functions when life gets busy and stressful. Try to keep good healthy routines to keep your brain (and body) in tip-top condition.
- Exercise – this is a weird one. I have no idea how it works (maybe something to do with blood pumping around your body and to your brain) but regular cardio exercise has been proven to help improve cognitive ability. If it is routine based e.g. a dance class or aerobics, I’ve found it’s even better – something to do with learning the routine. Plus it is fun and good for you on many levels! So, wherever possible, (and you don’t have to go big) get your body moving on a regular basis.
- Mindfulness and relaxation - take a bit of time in the morning to meditate or do a yoga to help clear your mind and help you to focus on the day ahead
- Keep life simple: try not to take on too much, to over-complicate things, or do too many things in one go. Ha! This is much easier said than done sometimes, especially with kids/dogs/partners/life to be getting on with! But we all need something to aim for…
- Write down important things – physically writing something (not typing) has always been a good way for me to remember things better.
- Post-it notes are banned! I write really important things on them and then lose them… Better to have a single notebook to write everything down in, or at least a single notebook per topic (e.g. one for work, one for home). I’ve recently revived an old Filofax for the fact that it keeps everything together in an easy to sort format. If nothing else is to hand, then I use the notes app on my phone
- To-do Lists – I live by them! Just the act of writing them out helps me to sort what needs to be done in my brain and remember things I may have forgotten – taking five minutes to write a to-do list each day saves oodles of time and the stress of ‘Oh my god, I completely forgot…”
- Try to get the hardest tasks or those that need the most concentration out of the way first thing in the morning, which is when your concentration is at a peak.
- Find a good calendar app – I have recently discovered an app called Grid Calendar which I find brilliant because it can handle multiple diary inputs on different lines. I can now see everything clearly at a glance which keeps double booking to a minimum. Find a system that works for you and be militant at putting everything in it as you make arrangements.
- Ask people to follow up conversations with an email confirming key points (or you can send the email) – this then ensures you both have all the important action points in one place, and can refer back to them regularly, ready to be transferred to your to-do list. If you are sending the email and miss anything, they will come back to you to add it in.
- If you are back at work and suffering, tell your boss about it and the strategies that work best for helping you keep on top of things – legally they are obliged to make reasonable adjustments to help you manage this situation. You may not feel comfortable doing this, but if they don’t know, they can’t help, and they can’t be understanding about a situation they have no knowledge about.
- Aromatherapy – whether you like your aromatherapy oils diffused with an aroma infuser, or added to a carrier oil and used directly in your bath or on your skin, I have found the smells help me relax and therefore concentrate better. Good essential oils I’ve used are peppermint, lavender, rosemary, sage, lemon, basil, and ylang ylang. If you are not confident in blending oils yourself, you can find some on my site.
- Supplements – there might be vitamins and supplements that help memory and concentration - check with your medical team before taking!
So there you have it, my personal guide to chemo brain. If you know someone who is suffering from it – please be patient with them… Especially when they forget plans you have made together or a conversation you had five minutes ago.
And while chemo fog might be frustrating and annoying, for me and for my friends and family, at times it can provide hilarious consequences. As it looks like it may be here to stay, I guess this is something we will be incorporating into my new normal.
I'm Emma, a regular mum, wife, dog-owner, boss - all round normal (and probably quite boring) person - now breast cancer survivor and start-up business owner. In early 2017 a few months after my 40th birthday, I was diagnosed with grade 3 triple negative breast cancer, and subsequently underwent 8 rounds of chemo, a lumpectomy and then 20 radiotherapy sessions. I finished treatment in December 2017 and fingers crossed I’m one year clear and counting.
As a result of my experiences, I set up Lions, Tigers & Bears - a website for people affected by cancer, offering three core elements - a shop, a blog and launching in 2019, a services directory.
My goal is that whatever you need throughout treatment and beyond - whether it be a product, a therapist, a professional service or advice and support, you can find it there.
I hand-select all products within the shop with a particular emphasis on independent brands, and in-line with my own values and beliefs, they’re ethical, sustainable, conscious, cruelty-free and toxin-free living. I strongly believe that cancer is what you have, not who you are, and that a diagnosis does not equal a style lobotomy! My mission is to help you find your roar and manage your diagnosis with style, sass, and confidence!
Three years on and I'm definitely improving