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Living With a Brain Tumour

Living with a brain tumour presents numerous challenges, not only for the patient but also for their loved ones and the way they navigate life. The ultimate goal is to lead as fulfilling a life as possible, for as long as possible, while maintaining the highest possible quality of life. This aspiration is universal, regardless of one's health status.

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With over 120 different types of brain tumours, the impact of each type varies greatly, and even individuals with the same type of tumour can experience vastly different effects.

Despite this diversity, there are common threads that many people affected by brain tumours share. Surviving a brain tumour involves more than just grappling with the medical aspects; it often encompasses a multitude of other challenges:

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  • Relying on benefits

  • Coping with the impact on children

  • Adjusting to the loss of a driving license

  • Managing frequent medical appointments

  • Adapting to life with a long-term medical condition

  • Facing the risk of seizures or epilepsy

  • Wrestling with the uncertainty of the future

  • Coming to terms with a loss of independence

  • Handling emotional and relationship difficulties
     

The journey of survivorship is complex, especially when access to support feels elusive, necessary services lack coordination, and individuals can't be labelled in a predefined category.

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A staggering 91% of individuals diagnosed with a brain tumour report experiencing impacts on their mental or emotional well-being.

The percentage of adults whose brain tumour has had a negative impact on their relationship with their partner

89% experience ongoing symptoms including personality changes, pain, memory problems and cognitive problems.

When confronted with challenges, solutions exist, it's a matter of recognising and accepting them. Acceptance may be difficult initially, but once achieved, it paves the way for rebuilding and adapting.
 

Maintaining a positive mindset and drawing strength from within can significantly impact one's journey. However, it's undeniably tough when faced with discouraging comments or emotional turmoil. Remarks like "you'll be lucky to live 6 months," "what are you worried about, it's only a meningioma," or "you're lucky all of that's behind you now" offer little comfort.
 

Questions arise about the accuracy and completeness of statistics. Do they truly represent the full spectrum of experiences? What about those who defy the odds and survive? What alternatives exist if chemotherapy is no longer an option?

Within our group, we have survivors who've overcome various challenges. Whether dealing with grade 2 or 3 tumours, killer meningiomas, or low-grade tumors, they persist.

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While acknowledging that not everyone may experience such outcomes, everyone deserves the highest possible quality of life for as long as possible. Our aim is to facilitate that journey.
 

We offer a range of tools for survivorship and self-care. Whether it's resting when needed, engaging in relaxation techniques, exploring alternative therapies, incorporating exercise and physiotherapy, or seeking counselling, we're here to support you every step of the way.

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