This post forms part of a series I am writing to pull together some research and personal experience on Chemobrain, what it is and how you might manage it and help yourself.
It’s a reasonably long post (2,750 words approx) covering:
1. My brain and its thinking:
-Poor Prospective Memory
-Inability to see the wood for the trees.
2. What I do about it
-Poor Prospective Memory
-Inability to see the wood for the trees.
3. My Personal Pitfalls
4. In Summary I have found it useful to..
In Part I we looked at the symptoms and likely causes of chemo brain, and based on this, the positive impact exercise and learning will have on improving and retaining your cognitive function. In Part II, we looked at other lifestyle factors, that also help you ‘make the most of what you’ve got’ – such as diet, sleep, mindfulness, etc.
I had intended Part III to be the top view of rehabilitation and got myself in a right pickle trying to weave my own experience in as examples!
So after thrashing around for too long I’ve decided to write this chattier post on my own thoughts and feelings about my current cognitive state, what I have implemented as props and prompts etc and put the top level ‘rehabilitation’ guidelines in a separate, fourth post.
My need to separate the two, speaks to the specific sorts of problems I think I have. I say ‘think’ because this has to come with the caveat that it is all largely self-observed – there was no laboratory testing of my unique and complex pre-chemo cognitive abilities AND it is now 14 years since I had chemotherapy, so there’s likely to be a load of other factors that might have affected my current neurological performance!
– If only I had a clone running alongside with a normal life – who hadn’t ever had cancer, cancer treatment and the inevitable decade-plus of additional stresses that go with survivorship – She might well have also been in steady employment, running marathons and otherwise in a state of ignorant bliss OR just as likely, still rather fat and unhealthy, planted heavily on a couch, drinking way more gin than I do, stuffing pizza and not caring about any of this! I hope I balance the books somewhere..
1. My Brain and Its Thinking.
The problems people report following chemotherapy can be unique to the individual though they fall into common categories as we explored in Part I.
In relation to my perception of what I used to be like, my main problems seem to be:
♠ Poor Prospective Memory (memory to do things in the future)
♠ Inability to see the wood for the trees
Poor Prospective Memory
It seems I used to have a great memory for my daily / weekly schedule. I didn’t rely much on appointment books or calendars, as one look for the week, often seemed to be enough. I would know what was happening and when, without checking again.
Arguably this skill might be one of many that will reduce if you don’t practice it, as anyone returning to work after a significant break, will testify.
However, after several years now of trying calendars, diaries, To Do lists etc I have not recovered this particular gift. I feel more in control this year than I have for a while, but rely more heavily on props and prompts and also making the effort to reinforce their use. When I don’t, they then still fail me and when I’ve been out of my routines such as on holiday, it takes a while to re-establish control, as I forget I use them!
I revisited the ageing research on prospective memory to see if that was the explanation for missing appointments, not paying bills and forgetting to email friends information I might have promised, but no. Loss of prospective memory seems more associated with older adults (75 years plus) than the middle years and I’m currently only 48.
I have to accept that some elements of my distractibility are innate and due to personality factors. I’m easily bored, always have been, always will be. My brain seeks novelty like a heat seeking missile! Consequently I remember having to talk to myself to concentrate in school and write reminders on long maths questions that there were 3 or 4 parts to complete so I didn’t move onto a new problem before solving the current one. My Mum also recalls my constant childhood refrain of “I’m bored!”
The drive for novelty probably explains why I have not been a great completer-finisher of dull, long term projects either! Once the vision for change is mapped out and a plan is rolling into place, I’m ready for the next idea – bored long before implementation is accomplished..
However, I also know, looking back that when push came to shove, I could give something important my entire and undivided attention, especially under pressure – as if that waved some magic wand which made it exciting. Now I have trouble with this, even when the tasks and events in front of me are interesting or when I’m highly motivated to finish them. They can still ‘disappear from view’, if I spot a plant that needs watering, break to make a cup of tea and whilst getting the milk out see something in the fridge reminds me to get something out of the freezer to go with it. As I go to the freezer I spot the recycling bin and start organising cardboard!
Now distractibility is about forgetting to get back to the task I was on.
Another personality trait that was definitely around B.C. is an element of unwitting self-sabotage – I’ve finally recognised I’m a perfectionist and this leads to procrastination which means making progress on difficult and unpleasant things can become very slow! Sometimes I can now recognise that I am up and out of my chair because I don’t like the task ahead and it wasn’t that something else that distracted me – I was looking for the distraction!
Seeing the Big Picture or the Wood for the Trees
Another thing I am certain I’ve lost, is an ability to see the wood for the trees in complex situations – that almost indescribable ability to hold all sorts of seemingly unrelated bits of information in my head – keep churning them over – knowing I could trust my brain to join the dots – that if I just stuck with it, I would have that beautiful moment of realisation or could trust my instincts on a decision that defied logic or organise a number of issues to present in a logical order.
I realise now it was almost a ‘gift’ as when I describe this to others, they usually laugh and say they don’t know what I’m worrying about as they never had it in the first place. Clearly it seems all sorts of competent people don’t generally need the levels of insight I’m talking about to function, so why am I complaining?
The trouble for me is, this accompanied by a good prospective memory, seemed to compensate for the otherwise scatty, daydreaming, novelty-seeking brain! And this was the element that enabled me to ‘fly by the seat of my pants’ in situations where I was put on the spot. Now I have to prepare and double prepare to both reinforce my thoughts as well as find the structure amongst them.
So, I think the big picture element kept my other thinking under control and helped me manage distractions. I enjoyed jobs that required flexibility and ability to react to stress and chaos but always had the threads of context (legislation, policy, procedure) floating around to inform thinking and decisions made on the run.
Some of these skills are definitely about practice and familiarity and about reinforcing memories by revisiting plans but unfortunately not all.
2. What I Do About It
I use an electronic calendar that is synced across my phone, tablet and computer. I put two audible alerts on everything with enough time to get somewhere if I have forgotten I will need to; change / drive / gather items etc to take with me!
I also write all of this into a paper diary. The act of recording it again does reinforce some memory. I look through the next few days of the paper diary regularly, to remind myself what’s in there and over time I have got a lot better at spontaneously remembering! Practice definitely does help.
I use a Things To Do Today Pad which also has a useful day planner, so I plan my day on here – because getting stuff done is not just about the appointments you have. For me it’s about cleaning out hens, mowing the lawn, getting some exercise and the myriad of other daily chores and basic administration we all need to complete.
I even put a reminder in the electronic diary to check the To Do list!
Even so, I can still be unproductive when I get distracted from tasks. So what do I do about that?
My main ‘work’ at the moment is writing a memoir so I spend aim to spend blocks of time at my desk. I set a timer for 25 minutes at a time. Having it in front of me is a useful little pressure to keep drawing my attention back to my work output. I use targets such as word count and the combination of time versus counts is a bit like having a motivating manager looking over my shoulder. (I’ve since discovered I am far from alone in using a timer for a little pressure for working from home.)
The electronic alarms and boings going off on my computer, phone and tablet also regularly bring my attention back to finishing the current job in hand and ensuring one task doesn’t end up filling the day because I’ve forgotten there’s much more I’d like to achieve!
Seeing the Wood for the Trees / Creating the Big Picture
For the most part – if I attempt complex thinking on paper I can still get there. I’ve noticed this with my writing in general – if I write about something enough, some of the old ‘lightbulbs’ eventually do come on. So I highly recommend it!
I did study for and achieve an MSc in 2012 – though the process pulling some of the work together was agonising:
One piece, I managed to assemble, by collecting and arranging individual thoughts and arguments on bits of paper. It took ages and it was a frightening experience when the penny would not drop. Bizarrely, I somehow managed a distinction for this piece of work, but have the unsettling experience of still not understanding the essay I managed to piece together. All in all a strange and unsettling experience that must be evidence of some implicit ability to identify the important pieces of information and their logical order, without explicit comprehension. I definitely had the trees but not the wood!
If I have other complex issues to work through I find writing different thoughts on cards a great way of brain dumping without having to organise at the same time. I can then move the cards into some sort of order to start to visually create the big picture. (This is similar to what I did with the MSc paper discussed above.)
And as I’ve already said, I have found writing a useful way to explore my thoughts in general and have discovered it as a way of crystallising ideas. (See my post “How do I know what I think ‘till I read what I write?”)
3. My Personal Pitfalls
I regularly reach stressful levels of chaos having forgotten or rebelliously abandoned my new routines! However, each time I start up again I feel I gain a little ground. I get somewhere faster, I know sooner how to be back in control. I can also explain it better and better each time to someone else and the greater understanding and appreciation of things I am still good at helps me balance my self-appraisal.
Boredom: Leads to restlessness which leads to a lack of focus. As a consequence, I have found I get more done, if I have more on. This in itself creates focus and means my days and weeks have variety in them. Some people work best if they focus on one thing all day. I don’t think I do. My energy slips if I’m on the same thing after 2 hours so I don’t build blocks bigger than that into my day. I no longer say ‘no’ to social engagements in the working day – I just work around them.
Seeing and communicating with people is an important part of brain stimulation anyway and if you no longer work or see less of people because of your new circumstances, that in itself can be a problem.
Holidays and other changes to routine: A great refresher for all of us but a change of routine for me often means a total loss of routine.
I need reminders to start again and a lot of discipline. These are skills anyone working at home has to have, but if you’ve almost forgotten what props were working, it’s harder to get going again. I now document these and leave myself notes for when I return to my desk. A bit like Paddington Bear’s ‘Notes to Self..”
Perfectionism and Procrastination: I like to get things right to the degree that it has hampered me finishing tasks – I polish things to perfection or put off nasty jobs! I have finally learned perfectionism is NOT something to strive for! (unless you’re a brain surgeon or concert violinist..) Perfectionism gets in the way of progress. Perfectionist tendencies lead to fear of failure or not being good enough which leads to self-defeating procrastination..
..And if you don’t start something – including a new habit – you cannot begin to get better.
4. In Summary I have found it useful to:
Implement a number of trusty props and prompts and stick with them long enough to develop new habits, whilst recognising which are most effective for me.
Remember my brain wasn’t perfect, nor were all my cognitive abilities before chemotherapy. For example, I have to acknowledge there were elements of distractibility already there. Because my brain seeks novelty, I don’t try and force it to stay on the same task all day – I think that leads to a diminishing return as far as intrinsic motivation goes! I change tasks regularly.
However, flitting from small thing to small thing, abandoning difficult tasks in favour of easy ones i.e. procrastination has needed me to force myself to practice sticking with unpleasant tasks for longer and contracting with myself to set periods of time to work at certain things.
I also find setting a timer a useful reminder to stay focused on specific tasks and to help stop my thinking from ‘drifting’.
Recognise well worn habits and check they’re not counter productive. I’ve recently given up playing games on my iPad over breakfast, as I think that may be training my brain into a narrow, single focus. Instead, I write three pages of anything that comes into my head before reading, speaking or doing much other than make the first cup of tea for the day – this is a trick I have picked up reading about fostering creativity – Encourage your brain to be expansive and ‘warm’ it up at the start of the day. (You don’t need to want to be a poet, writer or artist of any sort for it to have a positive effect. See The Artist’s Way by Julia Cameron)
Find the humour in frustrations – if you have time check out an old post of mine Writer Driven by Distraction – I’m pleased to say I think I am more focused than this most days!
When times are rough, acknowledge them. Facing them helps identify what will equip you to deal better with them, but always, always count your blessings as well – Antidote all the bad stuff with what is still good in your life. Practice finding it.
Finally, I have found it useful to look back over longer periods of time to identify progress and remember:
Progress, not Perfection!
NEXT TIME IN PART IV: NEXT TIME: A LOOK AT STRATEGIES TO HELP YOU DEVELOP YOUR OWN REHABILITATION STRATEGY FOR DEALING WITH THE CONSEQUENCES OF CHEMO BRAIN INCLUDING MEMORY LOSS AND IMPAIRED ORGANISATION SKILLS.