‘Chemobrain’ – the unofficial nickname given to cognitive or memory problems that can occur after chemotherapy – is something that we know affects bone marrow transplant recipients.
Billie in the patient team spoke to three people to learn how they manage living with symptoms and how they’ve needed to adapt their lives post-transplant.
Can you tell me about your experience of chemobrain?
It’s a bit like brain fog, and it goes alongside my fatigue. I often can’t think of the right words, and it’s really hard to reach for the words I want to use. Sometimes I forget words completely.
I got really frustrated over the word ‘salt’ because I’d always forget it and I had to have high salt intake in my diet. I’d be sat at the dinner table, saying, ‘Can you pass me the…um…um…?’ and the word wouldn’t come out.
I also struggle with my memory quite a lot. I can’t put things together properly in my brain. Before treatment, I had a brilliant memory. If I put something down, I’d be able to visualise exactly where it was. Now I have no idea. On a good day, I can kind of get a sense of where things are, but on a bad day I am constantly losing my phone!
Did you ever see an occupational therapist or a psychotherapist to talk about the effect of these symptoms?
I suppressed a lot of memory around the point of diagnosis, and I had to have a lot of therapy after transplant when I started to remember what had happened.
That was really hard. I guess it was my body’s way of coping with trauma and stress. I’ve also done quite a bit of CBT (cognitive behavioural therapy) which is really helpful to stop me getting worked up about the small things, like me being forgetful and getting frustrated.
I now recognise, ‘Oh, that’s because of this.’ I can’t change it, so I am going to change the way I think about it. It does help me a lot in dealing with that loss of memory and loss of brain function.
I know you don’t currently work, due to your post-transplant complications, but you do volunteer. Could you tell me about that?
I’m still unfit for work, sadly, so I volunteer a lot. I used to say I was a serial bum but now I spend a lot of my time volunteering!
I work quite a lot with CLIC Sargent, on their young people’s reference group. I also did an internship there earlier this year.
I also volunteer one day a week with a clothing range called Fix Up Look Sharp ,who upcycle clothes. I spend my time sorting through fabrics, cutting patterns and just helping out with whatever they want.
I sometimes do too much; last week I went to London three times and I’ve paid for it this week! But when you have a good day and the chemobrain isn’t there, you forget you have it. It can be very frustrating.
How do you manage your chemobrain? What are your tips for dealing with it day to day?
I use one note. That’s really useful for creating to-do lists and planning. We’ve got a big calendar up in our front room which has got everyone’s week on it, so I plan around that.
There’s a lot of planning around fatigue and chemobrain. Initially, I thought it wasn’t going to last this long. It’s got way, way better over time, but six years on, I still suffer with it.
I find that walking is a big help. I try to walk as much as I can, because it helps clear my head and gives me something nice to look forward to. I used to be good with directions, but when I got ill and the chemobrain set in, I couldn’t tell you how to get across town. I was always the person people asked for directions, too.
Because I’m going out and about lots now, all of the roads and directions are starting to reconnect in my brain. I’ve found that chemobrain does get better over time – not in all aspects, but in some, and that’s enough.
Can you tell me a bit about your experience of chemobrain?
I found that it was worse when I was having the treatment, but short-term memory loss is something I struggle with even now. I used to have a really good memory!
Sometimes my speech gets confused in my head. I say something, and then I hear myself and the words are something completely different to what I intended – which is weird. Sometimes it’s similar-sounding words, but not what I want to say, I think it makes me sound a bit stupid, and I’m not!
It’s difficult to distinguish from fatigue sometimes, too. I’m three-and-a-half years post-transplant and I had two transplants, so there were two lots of chemo.
How did it affect returning to work?
I work part-time, three days a week. I don’t think I could do full-time now, as I need those two other days to recover and nap. ( I am a teacher so I have thrown myself into a cesspit of germs there! I am constantly picking up infections.)
With regard to chemobrain effects, luckily I am quite rigorous with planning, so I do always have stuff written down if I do lose my train of thought. Before my treatment, I wouldn’t have been so strict with lesson plans, but there have been times in the classroom when I’ve completely lost my place, or said the wrong things. And I think, ‘No, that’s going to confuse the kids,’ so I take a minute or two to get back into focus.
Do you have any useful tips for managing chemobrain?
In the past, children’s names, meetings and appointments wouldn’t have been a problem to remember. But now I need to diarise everything. So I write everything down, and I find that helps me – I forget to reply to text messages, otherwise! I make lots of lists and I have a wall calendar and my diary that I use to manage life.
I also run, which helps me with loads of my side effects, including fatigue and joint pain, and definitely helps with my focus and brain function. So exercise is something I would recommend to other patients.
Can you tell me about your experience of chemobrain?
It’s difficult to determine at times whether I’m just being a dummy, or whether it’s the effect of the chemobrain! When I first came out of hospital, I couldn’t concentrate on anything. The idea of going back to work was quite frightening for me.
Before I was sick, I loved to read, and people bought me books while I was in hospital. But I just couldn’t fathom the idea of reading a book, even reading a page. My concentration span was just gone.
How did it affect returning to work?
I had a phased return to work, starting with four hours, three days a week. I’m sure that sounds like nothing to people who haven’t been through all of this, but it was so hard. I cannot emphasise enough how difficult it was.
I was so burnt out after the four hours. I felt like I was failing at everything, because I could remember how well I handled my job before I got sick, but I’d come out of hospital feeling so different. Even the most basic of tasks would exhaust me, and that would then affect me physically, too.
Did you find that it went hand in hand with fatigue?
I think so, I think the mental strain can make the fatigue worse and maybe vice versa.
Do you have any useful tips for managing the effects?
What I find really helpful, in terms of concentration, is post-it notes. I live by them! So any tasks I have to do, I write down. I also always have a notebook by my side, my sidekick, for writing down thoughts as and when they come along.
On the computer at work, I use diary invites to prompt me. In my personal life I use a diary for social stuff, and I also use my alarm system on my phone to remind me of things. I don’t forget to feed my cat Tripod, because she hassles me if I do!
Another tip that I find helpful at work is taking 30 minutes at the end of each day to think about things and reflect on what I’ve done – looking back on the day. Just taking more time to think, I guess, allowing that space.
Also coffee – a hundred and fifty percent! It gets me through the day.
Thoughts from our Patient Experience Nurse Hayley:
Chemobrain can sometimes be dismissed as a bit of a myth, and not taken as seriously as it should be. I think what Ceirwen, Rachel and Ashling have all discussed really highlights that it is a very real side effect of transplant that can last for many years afterwards.
The goal post-transplant is to get back to a ‘normal’ life, whatever that might mean for each individual. I think this shows that chemobrain can really hinder that, and requires a lot of consideration when planning everyday activities.
It’s really interesting that there a lot of similarities in all three experiences. Each of them has had to adapt their working life, for example. Supporting our patients in doing this is essential, speaking to employers or HR departments to help them understand what to expect when they return to work, and what they can do assist them in that process. And with patients like Ceirwen, who cannot return to work yet, it’s vital to be able to talk through their options.
There is a connection with chemobrain and physical fatigue that we see in patients, and this is really important to acknowledge as well. I think when we talk about fatigue, the focus tends to be on physical symptoms, but as these women have shown, mental fatigue also exists – and should be discussed with the same emphasis. We know from research that exercise or any kind of physical activity reduces fatigue post-transplant, and this has been confirmed in all in talking to these patients, as they use it to help manage their symptoms.
For anyone who’s experiencing chemobrain, adopting the same approach will be beneficial, along with their other tips such as using diaries, making lists and generally thinking ahead – although that in itself must be very tiring.
I really like how Ashling takes some time out at the end of the day to reflect, process and have some space; I think that’s great advice for anyone.
I hope that if anyone reads these stories and identifies with the symptoms mentioned, it can reassure them that this is normal, it’s real – and there are ways that you can manage the symptoms and have a good quality of life.
It is essential to tell someone if you are struggling. If you let others know how you feel, you can begin to get the help you need. Share what you’re thinking – find someone you can talk to. It could be a friend, or someone trained to listen; like your GP, specialist nurse, transplant team, psycho-oncology team or a counsellor.
It can help…
- To keep lists and use a planner for events and day-to-day activities
- To manage fatigue as best as you can
- To eat a healthy diet and try to include exercise and gentle movement in your everyday life
- To give yourself more space and time to think when completing tasks