Living with a Brain Tumour

Living with a Brain Tumour

Living with a brain tumour is a challenge. It can challenge you as the patient, challenge your loved ones and challenge how you continue to live your life. The aim is to live as full a life as possible for as long as possible with the best quality of life possible. It’s what everyone hopes for, no matter the state of their health!

There are over 120 different types of brain tumour. Unsurprisingly the impact of each varies hugely and even the impact of the same tumour type varies significantly from one person to another.

There are however some threads that are common for so many people affected by a brain tumour: surviving a brain tumour is not simply limited to the immense medical aspects, so often it’s everything else that goes with it.

  • Relying on benefits
  • The impact on the children
  • Losing your driving licence
  • Dealing with frequent appointments
  • Living with a long term medical condition
  • Risk of seizures/epilepsy
  • Challenge of living with an uncertain future
  • No longer living the independent life we had before
  • Emotional and relationship difficulties

The art of survivorship is not easy when support seems impossible to access, services you need are not coordinated and you don’t fit into a neatly labelled box for anyone to deal with.

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When faced with challenges, there are always ways to solve issues, it’s just knowing and accepting them. Accepting is hard but once we have accepted, then we can begin to rebuild and adjust.

Having a positive outlook and strength from within makes a difference. We know it can be hard when you are faced with some of the feedback you may receive or are having a tough time emotionally. Comments such as ‘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’ don’t help!

What are the statistics? Do they really know? Do they tell the full story? What about the ones that have survived the odds? What are the options? If I cannot have any more chemo what else is on offer?

We have GMB4 survivors in our group. We have grades 2 & 3 in our group, we have killer meningiomas, we have low grade tumours, but they are all still here!

Sadly it’s true that’s not possible for everyone, but we all deserve the best possible quality of life for as long as is possible. We are here to help make that happen.

We can provide you with all the tools you need for survivorship and how to look after yourself. Rest when you need to, keep pushing your body and mind, relaxation, alternative therapy, exercise, physiotherapy and counselling.

We are still working on our packages and are trying out some new exercises and physiotherapy, so watch this space.

For further information read The Brain Tumour Charity’s document Defeating Brain Tumours