Many people living with a brain tumour diagnosis will experience fatigue. The effects of fatigue vary from person to person and affect people with a low grade tumour as well as those with a high grade tumour.
What’s more, some people will experience short periods of fatigue after specific treatments, while others have to live with fatigue for months or years.
To help those experiencing fatigue, we’ve talked to members of our brain tumour community, who have generously told their stories so you can understand whether your fatigue is normal, how to cope and what you can do to potentially ease your symptoms.
Fatigue after treatment
If you’re having chemotherapy or radiotherapy, then it’s likely you’ll experience some sort of fatigue, after each round of treatment.
“The fatigue following the treatment has been awful,” explains Karen Humphreys, who has recently finished a round of six week-long radiotherapy treatments, to destroy the remainder of her astrocytic glioma. “I’m normally a very active person – I teach at a primary school and am a gym instructor – so I find it really frustrating that I’ve lost all my energy.”
Chemotherapy can also result in fatigue, though. Zoe Noble from Salisbury has been through both radio and chemo to treat a low grade astrocytoma: “Overall, it’s been tough, but the fatigue was much worse during the chemotherapy. I’d wake up in the morning and find it almost impossible to get out of bed. I’d just want to stay there all day.”
Tired and emotional
Fatigue also affects children after treatment. Alfie Tinney had an operation to remove a low grade pilocytic astrocytoma in 2016, and still lives with fatigue three years on.
“Since I’ve had the tumour, I get really tired, even though they took it all out,” says Alfie. “I’m currently taking the week off school at the moment, because I’m so tired.”
“I get quite emotional. I’ll cry at things really easily – even something silly like if I drop my coat. When I feel like that, I just want to get away from all sorts of noise.”
Sometimes, though, fatigue can show up in a completely different way. Kerry Boddy explains that her son Rowan’s behaviour always seems to have been the opposite of what you’d expect.
“Rowan was born with a brain tumour, so he suffered with fatigue from birth. As a toddler, he was almost too easy. He almost never got frustrated by things, he was too compliant and wasn’t that bundle of energy that you often see at that age.
“Then at four years old, when he started at nursery, everything changed. The change in routine affected him and he needed a whole lot of extra energy to keep up that he didn’t have – that was tough for him. It was then that I realised I needed to start pacing and grading his activities.
“His fatigue came out in a different way: lots of fidgeting, tearfulness and being on edge.
As he’s got older, there are certain signs that he’s suffering. One of the main ones is hyperactivity – which sounds like the opposite of fatigue, but it’s a sign that he hasn’t rested enough and it’s him disengaging.
Rowan often gets disinhibited, meaning he ends up being very loud and in your face and that’s a sure sign that he’s suffering from fatigue.”
Kerry and Rowan Boddy
How to cope with the fatigue
Planning is key
Kerry has learned that with Rowan, she needs to plan well to give the family the best chance of a good day.
“I tend to plan not only days, but often weeks for Rowan. If I know he’s got something big happening in the afternoon, I’ll make sure he uses his wheelchair in the morning.
“I’ve also worked with the school to make sure he does PE in the afternoon, as that will give him the best chance of enjoying it and it going well.”
Caroline Tinney also has to keep an eye on son Alfie and warn him. “If I know he’s going to be doing something quite tiring the next day, I’ll recommend he has a quiet night at home, rather than doing a club or something.”
Angela Conway explains how surprising it can be when fatigue hits without any warning.
Meanwhile Emma Mitchell knows that even standard activities can drain her: “I’m always conscious of how easy it will be to get home – even if it’s just going shopping during the day.”
However, Emma also makes sure to rest enough: “I try to keep to a normal sleep routine as far as possible – going to bed and getting up at broadly the same time each day. This routine includes getting into a relaxing routine before bed, reading or listening to audio books and having a warm bath or shower.”
Get some exercise
It might sound counter-intuitive, but everyone agrees that a little bit of exercise can be really helpful for fatigue.
Zoe explains that she enjoys a late-evening wander: “I’ve learned that it’s good for me to do exercise before I go to bed. Most evenings, at about 8pm, I’ll take the dogs out for a walk, which releases some energy and makes me feel a lot better.
“It sounds weird that exercise helps with fatigue, but I’ve learned that burning off energy is a good thing. It’s also great for my mental health.”
For Alfie, football is an important part of his life. “Alfie finds it helpful staying fit and playing football for his local team, Hoyland Magpies,” says Caroline. “His team-mates have been really helpful and supportive.”
Alfie also sometimes gets in a bit of exercise before bed: “He’ll suddenly announce he needs some fresh air,” says Caroline, “and he’ll go in to the garden and bounce up and down on the trampoline for 10 minutes.”
Emma Mitchell also agrees on the need for exercise, although she admits “it takes a lot of motivation. What I’ve learned is that, if I have to walk to the shop to do something, then taking a little detour via the park gives you a little boost.”
Watch Angela’s advice on how to cope with fatigue when you’re living with a brain tumour diagnosis. Spending time with a pet and going for short walks can be hugely beneficial.
Be kind to yourself
If there’s one thing that everyone agrees on, it’s that you need to cut yourself some slack. “I do everything in my power to make sure Rowan gets a good night’s sleep,” explains Kerry, “but there are times when Rowan can sleep for 12 hours and still feel fatigued the next day.”
Zoe Noble agrees. “I’ve learned not to put too much pressure on myself to do things – sometimes things are just too much and I have to accept that.”
“I’ve realised that regardless of what I do, I’m going to feel tired, so it’s the little achievements that help.
I try not to dwell on things if I can’t do them. It’s a case of acknowledging it and not beating yourself up about it.”
Even Karen, who has found the fatigue incredibly hard after her radiotherapy, says: “Although even going for a gentle walk will tire me out, I’ve come to accept it.”
And if all else fails, we like Alfie’s strategy for when he’s feeling fatigued.
“I either go and have a nap, or I lie on the sofa under a blanket and watch Toy Story.”
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