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
-Distractibility
-Inability to see the wood for the trees.
2. What I do about it
-Poor Prospective Memory
-Distractibility
-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)
♠ Distractibility
♠ 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.
Distractability
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
Prospective Memory
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?
Distractibility
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!
Writing my memoir, which is at this point more than 65,000 words, I have used writers’ software called Scrivener to help me organise and keep track of all of it. It has been invaluable.
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.
Lisa Reiter - Sharing the Story 
November 3, 2014 at 2:38 pm
Lisa I have now read this post twice and find it totally fascinating. I love the way that you have devised means for compensating for the loss in memory function that you have and these could be well used by anybody who suffers memory dysfunction. Many of the symptoms you describe I have to admit I too experience however there is a difference in that I haven’t had chemo. However could any chemical cause this not just drugs used in cancer chemotherapy? Age is probably a factor too but at your age you are still young and couldn’t attribute it to that. I think to have such insight into your own inner workings is a real blessing and to be able to pinpoint exactly what the changes are before and after. Knowing what makes you work might also help – I know I am goal oriented deadline driven. Working at home I have to create the deadlines for myself. You do the same with the use of your clock. Where I struggle is I set my goals too high (I’m not a perfectionist like you, I just think I should be able to get more done than I do in a day.) It is a big set up for failure. I agree with Geoff that if you don’t use it you lose. I discovered when I had little use for the spoken word I virtually forgot how to communicate orally. I could write but put me in a conversation I floundered. I still struggle. I find it fascinating that you suggest that a reason for it may not necessarily be the drugs but the lack of use during that long period of illness. This would tie in with use it or lose it. Have you ever tried brain training exercises such as lumosity. I wonder also at our change in lifestyle. We are much more reliant on electronic gadgets telling us what to do, remembering stuff for us and many of us are reading less full books going for short reads. We jump from one thing to another, our concentration spans are lower. It has to have an effect somewhere. I can see the difference in kids who use a lot of electronic gadgetry. They have little interest in games and jigsaws, monopoly and similar. They want immediate gratification or they aren’t interested. Norah would know a lot more about this than I but I think that kids brains are going to be quite different to the brains we had as kids. Perhaps it is a combination of all these things including the chemo. You caused me to smile at you having to write a note to remind you after holidays what you were doing before the holidays that worked. That really told me your chemo brain is one step below mine when it comes to memory. So glad you have found ways to tackle it.
Remember we’re out here giving you cyber hugs as you tackle this difficult part of your memoir. I think the reason there are parts that are hard is because we have internalised them and kept them close to our heart. Reliving them, writing them, admitting them is hard, really hard. Often though after going through that rough experience we come out of it with a lighter step. And then you can write your novel. Until then remember we’re with you all the way.
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November 4, 2014 at 9:34 am
What a heart-warming comment Irene. Thank you. I think all of the observations you make here are backed up with some science already, including the next generation having slightly different brains from ours. I think there are some imaging studies that show this. One concern is that too much porn causes significant changes to brain structure and that gives me great concern about society going backwards in its view of women.
Some other effects will be good (kids who shoot things on screen have better visual acuity!) and some will be bad. I make a point (when I have time) of trying to plan journeys and not use my satnav for the very reasons you mention here – use it or lose it. However, I also feel quite positive about some electronic interactions (we’re having a very supportive one here..) – We live in the sticks here (that’s out in a lonely part of country for anyone not from the UK) and Max uses Skype to interact with friends whilst gaming on-line in the school holidays. By having to verbally describe what he sees in front of him along with collaborate with friends to achieve goals, I can already see they have developed amazing verbal skills and levels of influence and co-operation etc for their age-group. Arguably it may only be kids who already have a good dose of these skills who are able to get more from this type of interaction and those at the other end of the spectrum are increasingly disadvantaged. Perhaps then there’s no learning from brighter or more skilled kids in the holidays as it is easier to hook up with like minded people, rather than make-do with everyone in the streets. Maybe we will see a greater polarity of social development. But when I listen to them, I can imagine a couple of Max’s geekier friends will go onto do unimaginable things with technology and I’m fascinated to see where it all goes! Ever optimistic but these are the lucky ones. They still have parents who make them do everything else – like interact with people face to face and exercise!
Meanwhile, my subconscious has me thrashing out the difficulties of my memoir, publicly! Almost without realising it. My latest post may well be my final page in draft – I just have to fill in the blanks now. I’m so grateful for your support and cannot wait to read yours. Lots of love, Lisa xx
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November 4, 2014 at 8:53 pm
That is interesting. I’ve not heard that re porn.Hope your fears don’t eventuate as regards to women. I agree totally that there are some great effects from the internet (such as our interractions). For the isolated like you (I am now seeing you on the moors of either Yorkshire or Dartmoor) and the introverted, housebound and writer) the benefits of being able to communicate have been incredibly beneficial as you said. Unfortunately human nature has followed us onto the net with bullying and other less likeable human traits. I think it will be used by everyone no matter what their skill set to some degree or another.
I read your post what does survivorship look like late last night and agree totally – you have your last page. It takes you back to the beginning, through the journey and survival at the end with just a hint of I’ve done my physical survival and my mental survival is a WIP but I’m winning. Fantastic. Now for the hard work of editing. I’m going to take you up on that offer of beta reader so you’ll hopefully be reading it soon. Lots of love Irene ❤
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November 7, 2014 at 6:50 pm
Fab! I look forward to that. Better light the fire tonight and start reading down my current pile! Thanks for all your feedback here Irene. Always instructive and a great motivator.
Much love, Lisa 💜
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November 7, 2014 at 10:33 pm
You are likewise to me Lisa and much appreciated. Will be in touch. ❤ Irene
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October 27, 2014 at 9:29 pm
Lisa I love your blog period. I don’t have a special post over another I just love your blog and how you talk about your cancer. I do have to say though your post about Chemo Brain caught me funny and I got a chuckle out of the title. I never had chemo, Radiation was my poison. I had brain damage as a child from a car accident and now ontop of that I have the Fybro fog.
I really enjoyed reading this post. I learned a great deal. I know I will be reading it again to really understand it all.
I have nominated you for the ‘One Lovley Blog Award’. http://live2laugh4love.wordpress.com/2014/10/27/one-lovely-blog/
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October 31, 2014 at 11:45 am
Thank you for nominating me for this award. I also really appreciate your comments about my blog and this post in particular. I have a sense that I have a silent readership of those struggling with cancer or survivorship so it is really good to hear some feedback from someone who has been through some similar horrors and actually understands what I’m trying to say.
Love your blog too. You are inspirationally positive 🙂
Lisa xx
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November 3, 2014 at 9:45 pm
I think you are right about having a silent following. Cancer is a really hard thing to get past for more than one reason. For me it was a like a whirl wind of horror movies being played out. I don’t know how long it took for you to be able to really deal with it. I just had five years and I still find it hard to deal with.
Thank you for your encouragement on my blog. Somedays I inspire myself through my blog. 😀
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November 4, 2014 at 8:06 pm
I’m still dealing with it! My guess is I’ll always be dealing with it. I’m supposedly 13 and a half years past my sell by date and still dealing with the horror of that alone. Writing about it is somehow facilitating the getting over it, even though the writing is often the nightmares relived – so I totally agree you can inspire yourself writing your blog! I definitely have lately 😀
After 8 years I was treated for PTSD which helped put the ‘horror movies’ back in their box. The link with traumatic health experiences is becoming better known, so might be worth exploring, if you are able. And for me, year by year, some things continue to get a bit better.
I’m not one to push my posts but these two new ones will ring more bells with you than many of my other louder listeners!
What Does Survivorship Look Like?
Bite Size Memoir – It Made My Day
Big Hug X
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November 5, 2014 at 1:20 am
You have really helped me a lot these last few days, thank you. I expected so much of myself Going in to ‘cancer’. 1 year, celebrate the victory. 2 years do something memorable. 5 years was big. When I got there I wanted to have a big party and ‘in my mind’ that would be it. I would not have trouble with cancer anymore. It is so amazing how we trick ourselves.
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November 5, 2014 at 9:45 am
Thank you so much for this comment. One of my inner needs is for all this honesty to help others in however small a way as possible. Any unusual trauma separates us from other’s understanding and sometimes it has really helped me just to know I’m not actually alone. I’m glad sharing these things reach some people. 🙂 The biggest problem with cancer and some other diseases that unlike many other traumas, there’s no guarantee it’s all behind you. The hype suggests it is, to others who haven’t sat in the oncologists waiting room. However, we do have to try and believe it is, otherwise we’d go crazy very quickly and maybe even invite disease back – The mind is a wonderful and terrible thing all at the same time! All the ‘getting on with things as normal‘ takes an effort that seems to sap some sanity and energy and we’re left with the stress-meter a little more ramped up at base level than it is for most other people. Whoever said ‘Time’s a great healer’ was right but they forgot to mention that it wouldn’t be perfect.
You are a fantastically positive and inspirational survivor, so go easy on yourself. It’s about progress not perfection.
Lots of love, Lisa xx
PS: If you’re on Twitter, I’d love to find you @Lisa_Reiter
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November 5, 2014 at 2:35 pm
Thanks for your words you really are very positive and helpful. I appreciate the honesty you approach life, cancer, with. I Will look you up on Twitter!
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October 19, 2014 at 8:59 pm
Very well written Lisa! Insightful, authentic, as well as inspiring and helpful for anyone suffering from chemo brain or any other cognitive dysfunction / brain fog due to chronic or acute illness.
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October 20, 2014 at 11:56 am
Thanks Suzanne. I really appreciate you finding time to read and comment. 🙂 Lxx
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October 15, 2014 at 8:01 pm
Your comments on chemo brain are so interesting to me. I finished chemo 5 years ago this month and during the whole process my doctors always told me that “chemo brain” does not exist and not to worry about it. However, for the past 4 years or so I have not felt the same in terms of being able to remember/retain new things and just basically having the feeling that my brain has turned to mush. I have always attributed it to just getting older (I’m 49). By now I have just put that whole terrible time behind me and have not really thought anymore about the correlation between the way I currently feel and my past with chemo. Your blog has brought this subject back up and has made me want to look into this further. Thanks for making me realize that there may be a reason behind why I am feeling like this.
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October 20, 2014 at 11:54 am
Hi Kim
Thank you for sharing your thoughts on this. We’re a very similar age and it is tempting to attribute any losses to ageing but then I also fear that’s giving up on working at it! If like me, you have a sense of having lost a few years, back whilst you were ill, it seems even more important to see how I can squeeze a better immediate future out of my brain cells, now.
I hope you find some ideas in the other two posts in this series for overcoming or at least feeling a sense of purpose in tackling memory and retention. It can be slow and frustrating but there’s plenty of evidence that working at cognitive function benefits us all regardless of the reasons for any sense of impairment.
Lisa x
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October 12, 2014 at 8:48 pm
Wow Lisa. This is a brilliant post with so many wonderful comments. It is great to see the progress that has been made, but there is still a long way to go. Just as well you are in there pushing the barrow!
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October 12, 2014 at 12:26 am
I’ve read this twice and then the comments from those with meaningful personal and professional angles to add depth and gloss and I feel so diffident to add in anything. But I know you love a comment. When we met we talked about getting out of practice as one cause in the memory’s slippage from its sharpest heights. That plus age – the sense it needs defragging to increase the available memory. When I only had a paper diary I remembered my appointments nearly always with only one check first thing in the morning; I had to. My secretary was in charge of booking my slots and she had control of the paper; we tried me having a small pocket diary but we too often double booked so I had to have good recall. I sat alongside a taxi driver today, taking calls from customers and happily committing to memory their requirements, stating confidently that he never missed one. Now, I end up at the top of the stairs in that classic pose of having forgotten why I have gone there. I don’t have clients who will scream at me so it doesn’t matter as much. I have a diary in my pocket to refer to and still I miss things. Age, I think mostly but lack of practice, lack of priority even (who really cares if I miss this or that?) I’d love to know the answer if you find it somewhere.
My mum in law is staying. She’s started talking about her latest fear; dying and not really being dead. This leads to circular arguments about the method of disposal of the body (gruesome eh?). At least dismemberment (for transplants) and cremation mean soon enough you’re gone, whereas burial you could wake up. I’m put in mind of these conversations by the references to brain scans above and seeing the brain’s activity and how it has changed. Maybe that would put her mind at rest (sorry for the punning) if she knew she could be checked to make sure she had really gone. Me, cut me up and feed the rest to the ducks.
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October 12, 2014 at 10:39 am
Thanks for such a long comment when you start out saying you might have nothing to add! However, I’m grateful for your reiteration of ‘use it or lose it’ message which is one of the reasons we do see decline in later life.
Also it’s worth those who have had long periods of care whilst ill, recognising they may have had all sorts of routine tasks taken care of by friends and relatives for a substantial period of time. Thinking how wasted one’s muscles get when ill, it’s worth considering how shrunken some basic neural pathways might look in comparison and like the muscles, need some effort and persistence to reestablish.
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October 9, 2014 at 1:29 pm
Interesting, Lisa, and wish I had time to look into your thoughtful posts in more depth. I’d be curious as to how much the changes you’ve observed due to chemotherapy compare with changes that might have happened without it. I know you’ve looked at studies of ageing but I’m also interested in potential changes through adaptation to different environments. I suppose it’s useful for any of us to have some knowledge of our strengths and weaknesses cognitively and work out how best to compensate as you’ve described here.
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October 9, 2014 at 6:18 pm
So would I Anne – It’s the million dollar question isn’t it? I’m sure I’m affected by the whole gamete of stress, change in lifestyle etc etc as well. None of us lives in a vacuum which is why studying cognition and behaviour is the superior science!! Lxx
Now where did I put that clone..?!
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October 8, 2014 at 10:24 pm
I reiterate Charli’s praise. The depth of your self-reflection is admiral. Intrapersonal intelligence was one of the first listed by Howard Gardner. You certainly rank highly there. What is really special about this,though, is your willingness to so openly share it with others; which would give you a high ranking on interpersonal intelligence also. I think this post is important reading, not only for those who may be experiencing chemo-brain, but for those close to people with chemo-brain. I had not thought about possible long-term effects. This should really be researched, but I guess it could be difficult to do as it can’t be predicted accurately who will or will not need chemo in their future, and once a diagnosis is received, even that would be to late for pre-testing, I think, as the diagnosis itself would affect thinking. However it is probable that there are many people who have had some form of testing and then at a later date had chemo, who could be retested and a comparison made as a beginning study. It would certainly be interesting. My sister did not live long enough after chemo, and suffered other complications, for any effects to be definitive. Congratulations on the valuable insights you have developed and shared. I think understanding is the first step towards acceptance. After that an ability to cope may follow. 🙂
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October 9, 2014 at 6:14 pm
Thank you so much Norah for your encouragement. There is thankfully some good-looking research underway following the recent developments in brain imaging. Although it’s hard to find ‘before’ and ‘after’ images, there is a growing consensus that following certain drugs, brain volumes in specific brain sites are significantly smaller for groups of people having had chemotherapy compared to control groups who haven’t. In the absence of detailed images, the sceptics have successfully argued for several decades that any differences in cognitive performance are probably due to stress and other factors. However, now there are other more targeted drug option for cancers such as breast cancer, they can see these people don’t suffer the same degree of neurological damage and yet they have most likely been through all the other factors associated with having the disease.
I do have a ‘before’ brain scan if anyone reading this wants to have a look at me! The stress was giving me enough symptoms to look for metastases there – thankfully there weren’t any but I totally acknowledge some of my ‘loss’ probably does come down to living in fear for so long.
As for being candid. Until the research is out with a handbook of dos and don’ts for chemotherapy patients, the only support available is rather general so some more detailed personal accounts might help others in similar situations. I also agree with your suggestion that greater understanding does help coping and self-acceptance in limiting situations as well as battling through to the other side! Knowing you’re not on your own, not imagining it can be empowering in itself.
Lxx
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October 7, 2014 at 1:30 am
Progress not perfection…that’s a motto we can all use! I’m terribly impressed how you have managed to process your experience, recognize and define your memory challenges and find that your props and prompts are useful to anyone. I better understand, too why the storyboard appeals to you. It is a tool by which you can both dump ideas and later organize. In my last revision, I thought I actually used it to dump ideas in order to break through a few timeline issues I had. I’ve recommended your blog to my eldest who is writing a memoir during NaNoWriMo. She also has Lymes Disease which has impacted her memory. It is very similar to what you describe as chemo-brain. Wow. Thanks for sticking with it and processing all this into an insightful and useful essay.
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October 9, 2014 at 5:57 pm
Oh my goodness Charli – I didn’t realise you could have chronic Lyme disease until I looked it up, just now. I imagine your daughter must have a few other uncomfortable symptoms to go with memory issues 😦 which totally sucks. I am sorry.
There are three words of advice for memory issues: Persist, persist, persist unfortunately! My guess is she’s a plucky young buckeroo especially if she’s going to have a go at 50,000 words of memoir in November. I had hoped I’d have finished my first draft in time to have a go at a novel, but may well join in with the camaraderie going around to keep me on doing so. Trouble in writing miserable stuff is it tends to make me miserable and then I slow down, so the quid pro quo for a good day is that the next seems to be pants!
The antidote might be to write happy one day, sad the next but I fear I’d lose my drive to finish the bad one! 1200 bad boys today and out with a friend tomorrow, so that’ll be good.
Meanwhile the next and probably final post in this little series is looking at general hints and tips for all the cognitive issues associated with chemo brain but they obviously apply to anyone with similar impairments – in fact, in the absence of much concrete rehabilitation research for chemo brain, I’m drawing on other research into brain damage. (There is some good stuff underway, just no handbook yet!)
Thanks for you comments, Lxx
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