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Did you know that there are over 120 types of brain tumours – glioblastomas (GBM4s), meningiomas, astrocytomas, gliomas are just a few – all of which require different treatment options? In some cases surgery is necessary; in others it may just be a question of watch and wait. But you need to know what the best course of action is. brainstrust can help you.

Pointers

There is nothing like hearing practical advice from carers who have been there, done that. This page would really benefit from being created by you; the people who know, and have developed tried and tested ways of caring and overcoming difficulties with practical solutions. If you have some tips or advice, email hello@brainstrust.org.uk and we’ll make sure others can benefit from your experience.

Here are some tips for YOU - the carer, from a carer:

  •  Being a carer is a job. It won't always be one which you have chosen and respite is your earned right. Take it. Often.
  • Don't delay in asking for help. If you don't ask for it, you will run yourself into the ground. 
  • People want to know how they can help. Be specific. Suggest practical things that they can do. This helps them and then everyone is happy.  
  • A brain tumour diagnosis can lead to changing roles within the home. If you’re not used to house keeping (or even if you are!), relax standards, prepare simpler meals, and ask for help
  • Take time to learn about the condition of the person you are caring for. 
  • There is a difference between caring and doing. Be open to new ideas which may help the person you are caring for have more independence. 
  • Trust your instincts. Most of the time they will lead you in the right direction.
  • Don't feel resentful about the freedom you have lost; focus on what you are gaining. 
  • Talk to the patient about your feelings. Talk about other things as well. Having a brain tumour doesn’t mean they’ve lost all interest in their favourite things. 
  • Seek support.
Date published: 17-05-2009   Last edited: 28-08-2012   Due for review 28-08-2014 brainstrust - information standard accredited brain tumour information

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