Managing side effects, All, Handling Chemotherapy

Chemo Brain – find your way through chemo fog

Man surrounded by fog

Chemo brain, chemo fog – whatever you choose to call it, it was something that I had never heard of until I went through chemo myself, and got lost in the fog myself…

We all know about the expected side effects of chemotherapy – nausea, hair loss etc. But chemo brain (chemotherapy-related cognitive impairment or cognitive dysfunction to give it an official name) was one that I did not expect. Although to be fair, I probably would’ve had to have known about it to expect it. It is a side-effect that completely side-swiped me, and which 15 months on still has a fairly big impact on my life.

It’s frustrating and annoying, for me and for my friends and family, yet also at times completely hilarious. As it looks like it may be here to stay, I guess this is something we will be incorporating into my new normal.

Goldfish - known for terrible short-term memory

“Not only is my short-term memory horrible, but my short-term memory is horrible.”

What is Chemo brain?

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
  • low mood, stress, and anxiety

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.

Keeping notes to aid memory loss

Symptoms of Chemo brain

  • Difficulty concentrating or focusing on one thing
  • Struggling to the right word for a particular object
  • Difficulty in following and staying focused on the flow of conversation – particularly group conversations
  • Find it hard to learn new skills
  • Fatigue
  • Feeling of mental fogginess
  • Short attention span and short-term memory problems
  • Struggling to multitask (doing more than one thing at once)
  • Taking longer than usual to complete routine tasks, and finding it hard to do things you previously found easy – such as adding up in your head
  • Problems with verbal memory, such as remembering a conversation
  • Trouble with visual memory, such as recalling an image or list of words
  • Being unusually disorganised
  • Confusion
Puzzle to help chemo brain and mental agility

My personal experience of Chemo Brain

I suffered really badly with chemo brain whilst having treatment – to the extent that I have whole chunks of time that are completely erased from my memory – probably not a bad thing given what I was going through at the time, but still, there are basically months of my life practically gone! To give an example of how bad the brain fog was at times, there was one occasion when a friend told me about an awful family situation that she was going through. The next day I had absolutely no recollection of the conversation. Nothing, nada, the whole conversation just erased from my mind. Maddie – I’m still so sorry about this!

I only made sense about 50% of the time with the way that I would drift off during a conversation, get side-tracked, and lose all of my words. I would run out of steam on a conversation as I completely lost my train of thought. An example was when 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 then it has eased off a lot, and I am learning ways to manage it. However, I still feel the effects on a fairly regular basis. For me, 15 months since my last chemo, the chemo brain manifests itself in getting easily distracted, losing my words and /or the thread of what I am saying whilst I am part-way through a conversation, forgetting things I have been told, repeating myself because I forget what I’ve said to whom, a complete inability to do basic maths without a calculator and regularly double-booking myself for plans because I struggle to keep on top of my diary.

I find it massively frustrating, as having always quite prided myself on the fact that I was generally fairly smart, I now feel stupid on a fairly regular basis. It has rocked my self-confidence at work, because I feel judged when I can’t remember conversation or can’t string a coherent sentence together.

But before we go getting too “poor Emma”, lets instead focus on taking control of our particular situations, and take a look at practical tips for handling our poor addled chemo brains.

Checklist for helping with chemo brain. Strategies to handle cognitive impairment.

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, then 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 dont have to go big) get your body moving on a regular basis
  • Also, 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…
  • If something is important, write it down – physically writing something (not typing) has always been a good way for me to remember things better.
  • However, Post-its 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 (eg 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 out in my brain and remember things I may have forgotten – taking 5 minutes to wrote 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, so having set up multiple iCloud calendars (eg work / home / gym etc) 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 – this can be really helpful in aiding focus and concentration, 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. Good essential oils to use are peppermint, lavender, rosemary, sage, lemon, basil, and ylang ylang. If you are not confident in blending oils yourself, we sell pre-blended essential oils here on the site which you may find useful.
  • Supplements – there are lots of supplements (check with your medical team before taking!) that can help improve your memory. Vitamin B-complex, Omega 3 fatty acids, Gingko Biloba, and many Ayurvedic herbs can help

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 5 minutes ago.

If you are suffering from it yourself, I wish you luck and offer a final thought for the day

The advantage of a bad memory is that one enjoys several times the same good things for the first time.

Friedrich Nietzsche

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One thought on “Chemo Brain – find your way through chemo fog

  1. Thomsonkim34 says:

    Hi! I’ve only become aware of this site today via Surrey comet and I’ve got to hand it to you what you have done is amazing! Like yourself I’m still dealing with chemo brain plus menopause etc it’s one rollercoaster isn’t it..anyways I just wanted to say ‘high five’ for creating this site. I’m ordering the peppermint and poppyseed soap in the morning (makes a change from using simple) so shall look forward to using that. All the best x

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