A brain tumour diagnosis is devastating. We know.
If you’ve been diagnosed with a brain tumour, or someone close to you has, you’ve entered a new world. Suddenly you’re a ‘patient’ or a ‘caregiver’ – neither are roles which you’ve chosen, or for which you are trained. You’ve been flung into uncertainty so that making good decisions about what next becomes instantly more difficult. The world has become a different, unfamiliar and scary place.
You’ve fallen into a world of hospital appointments, of treatment, of ongoing symptom management, and you now have to make decisions about treatment options for something you might never have heard of, never mind thought about before.
This new reality is hard to take on board. It is not surprising that you can feel lost and feel that you are no longer in control of your life.
What can help?
Within the sense of loss of control there is much that can be reclaimed. brainstrust is here to help you to regain control in those areas where it is possible, and to support you to make good decisions about all aspects of your brain tumour journey, based on good and reliable information.
Our support specialists are all trained coaches who specialise in helping you to identify how to make change happen and work with you to identify what you need to do to help you feel back in control. This can mean helping you to identify what questions you need answered, what you value most, and who’s on your team to give support when you most need it. Our regional specialists are at the end of the phone and happy to support you.
Good decisions are based on good information. Our fabulous online resources help you to understand brain tumours, the patient pathway and what you should be expecting and when, and treatment options available and managing your fatigue. We will send you a brain box, patient guides, the radiotherapy book and our fatigue resource should you prefer a physical copy.
Our brain tumour hub gives you access to brain tumour-related information, including addresses of local support groups and information about driving licences, travel insurance and many other things.
If you are a parent whose child has been diagnosed with a brain tumour, Little brainstrust is there to support you.
Taking control can mean finding good support networks to help you feel less isolated. Our peer supporters are trained volunteers who have been through a similar experience and can offer you on-going support, or you can come along to one of our local meetup events. For those who like social media our facebook group can be a very positive source of support.
There’s no need to feel out of control. Speak to us.
Talking about advanced cancer: When a brain tumour comes back
Not all brain tumours recur, but the highly aggressive ones do. When this happens, there are still options on the table. But it is an entirely different situation from an initial diagnosis not least because when a brain tumour comes back it is not the same tumour that first presented. And this is one of the reasons why they are so hard to treat; we have limited treatments and the cancer just keeps mutating and finding its way through.
So it is important that you have the right kinds of conversations when this happens, so that you can decide what is important to you and your loved ones. You know the future is uncertain and you aren’t reassured by hearing that, “you’ll beat this.”
No matter what your role is, in any conversation about a life limiting illness, you will need to respond with emotion, make decisions that might be at odds with other people’s, deal with the stress of meeting expectations (or not) and nurture hope when the future looks bleak.
You’ll be reassured when your family, friends, and caregivers recognise your reality and are with you for whatever comes. You may be given advice that you haven’t asked for and sadly, people who you thought had your back may not be there for you.
Knowing what’s important to you, how you spend this time and how you want to be with each other can bring clarity and peace. This will become your true north. Being able to create the moment where the conversation about these things can be a real gift; this guide helps you to do this.