They’ve Been Diagnosed with a Brain Tumour – What Now?

As part of Brain tumour Awareness Month, Millie Fuller has shared some useful advice…

Of those diagnosed with a malignant growth, 88% don’t survive beyond 5 years, making brain tumours one of the most earth-shattering diagnoses a person can be given.

It goes without saying that the toll of the disease can be overwhelming. Compounded with the potential financial instability of being unable to work, those diagnosed can suffer emotional and physiological anguish.  And yet, support from those closest may make all the difference. The path following diagnosis is often unclear, so it helps to be supported by people who love and care for them.

However, looking after someone through a brain tumour diagnosis can be difficult to say the least – even more so when you don’t know what the future holds or how to help.

When a loved one is diagnosed, what can you expect?

How they might react to the diagnosis

It’s normal for people diagnosed with a brain tumour to experience multiple emotions, even at the same time. For example, horror, devastation, anger, sadness, and even guilt. They may even feel nothing at all.

As humans, we’re all different, so everyone will react differently. For some it may take more time than others to get their head around the diagnosis.

How their personality may be impacted

Anything that involves the brain can cause personality changes. This is true for brain tumours, with potential changes including mood swings or flat mood, aggression or anxiety.

The personality changes witnessed depend on the location and size of the tumour, with severe cases causing extremes that may feel as if they alter the person’s disposition entirely.

How their cognition may be impacted

Cognition refers to the process of thought and understanding. Common cognitive symptoms that a brain tumour can cause include memory lapses, disjointed communication, and low focus.

Disinhibition has also been reported: a lack of impulse control leading to behaviours that may be considered unacceptable in public, like risky acts. Furthermore, a general loss of empathy and detachment may be seen.

The loss of memory can also alter a person’s personality since our memories shape our identity and sense of self. Consequently, those with brain tumours can find it difficult to maintain relationships and function in a professional setting, like work.

How they may physically feel

The most common physical symptoms relating to brain tumours include headaches (usually migraines) and seizures.

Other symptoms that may occur are recurrent numbness and tingling in parts of the body, like the hands and feet; trouble speaking or understanding others talking; visual disturbances, like blurred vision; and weakness or paralysis of limbs.

Individuals with a brain tumour may also experience problems with balancing, exhaustion, and restless sleep.

Support you can give someone diagnosed with a brain tumour

Possible practical help

Having practical support from those surrounding them can make it just that much easier on those with a brain tumour, despite the physical and emotional impact.

This could include helping out with small tasks such as:

• Preparing meals
• Shopping for food
• Giving lifts to appointments
• Keeping the house clean
• Doing their laundry
• Maintaining their garden

Furthermore, even if it may not feel like it at the time, it’s appreciated, no matter how small the task is.

Some people want to remain as independent as possible so it’s possible that your offer of help may be declined – don’t take it personally – instead, let them know that you’re here when they need you.

Emotional support and a listening ear

Offering emotional support can be one of the best things you can do to help. Giving reassurance and comfort with kind words and gestures can sometimes be more valuable than anything, especially for those diagnosed with a brain tumour.

When talking to them, listen carefully to what the person is saying and try to show patience and empathy. A good listener is thought of as someone who tries to be aware of another’s thought process and emotional state as much as possible. You may feel like you need to have all the answers, but that’s simply not true.

Furthermore, it’s important that you let them lead the conversation. Doing so gives them a safe space to express themselves, their feelings, and their thoughts. It can be difficult but try to validate their feelings to make them feel less alone. Try not to interrupt or change the subject even if you feel awkward while they talk about their diagnosis.

It’s also ok to be emotional while listening – that’s normal and it’s fine to say so. Showing your own emotions may help show them that it’s acceptable to feel sad or angry after receiving this news and can remove any awkwardness between you. On the other hand, they may not cry (and that’s also ok!)

How to handle conversations

When you learn about the diagnosis, it can be difficult knowing how you should react. It’s easy to end up saying nothing or even avoiding it entirely so the elephant in the room doesn’t have to be faced.

The truth is, noone is prepared for this conversation and there’s nothing wrong with saying that you don’t know what to say. Just being there and listening is key.

Try to avoid saying:

“You’re brave. I’d be in bed if it was me”

“George down the road had that”

“I feel your pain”

Instead try saying:

“I don’t know how to feel but I’m here”

“How are you doing?”

“That must be difficult”

Looking after yourself

It’s hard watching someone you care for struggle. It’s even harder when they’ve always been the one who has been there for you. Supporting someone else can be tough at the best of times. It can be physically and emotionally demanding, and even more so when you’re also coping with that person’s diagnosis yourself.

In fact, family caregivers are often so involved in looking after the person to the best of their abilities that they don’t notice their own mental health taking a hit. Family caregivers often experience emotional upheaval as well as burnout. Furthermore, when carers don’t take note of their own feelings and needs, they can become even more overwhelmed.

• Taking time for yourself may leave you with a sense of guilt, but taking breaks is essential
• There’s help available if you’re feeling overwrought. There’s no shame in seeking help from counselling, group therapy, or your GP
• Try to keep a good pattern of eating and sleeping even if you don’t feel up to it

Summary

This Brain Tumour Awareness Month, we’re thinking about those recently diagnosed, living with a brain tumour, and beyond it. Simply understanding what to expect after a diagnosis or knowing how to support someone else can go a long way. However, those who are supporting others through this difficult time shouldn’t forget about their own needs too.

Let’s support everyone going through this tough journey with empathy and kindness.

Millie Fuller
Creative copywriter and self-confessed coffee addict.