Colloid cyst community hub
When you’re diagnosed with a Colloid Cyst, it can be a struggle to find the information that you need. We also know that the word ‘cyst’ comes with its challenges; family and friends might not understand the significance of your diagnosis and you may find that you’re unsure whether you can reach out for support or know when to.
We’ve been speaking to our community to find out what resources and support they have found the most useful. On this page you will find links to information that will help you to feel less isolated, more in control and better resourced.
The brainstrust colloid cyst page has been my only source of support as I feel it’s been lacking from my Neurosurgeon.
It’s a safe place to ask questions and get real answers from people who have or are going through this emotional rollercoaster. I want to thank brainstrust, I feel like they are the only ones who actually care.
Coaching with brainstrust
Coaching begins with questions; we ask you what you need and what you want to achieve. It’s about collaborating with you, listening to you actively, and helping you build up a toolkit of skills to achieve your goals. With coaching, you focus on specific, definable issues with the intention of creating practical solutions that work for you.
Use our Thrive platform to get in-depth, on-going coaching support from our specialist support team. We can help you gain control of your situation to live the best life you can.
Click the button below to visit our ‘Thrive’ page and begin your coaching journey. Alternatively you can call 01983 292 405 to talk to a support specialist about how coaching could help you.
Colloid Cyst community resources
The information on this page has been put together by our community for people living with a Colloid Cyst. It has been designed to signpost you to support and services that other members of our community have found helpful.
We plan for this page to grow over time, so if you have anything that you would like to share on here, please get in touch.
The challenges of living with a Colloid Cyst
“Getting a brain tumour diagnosis does change you and your outlook on life, so don’t try to be the same person as you were before but embrace your new world and the challenges that face you.”
“I’m told that my headaches aren’t related to my cysts. That’s hard to process and seems confusing to me.”
“The word ‘cyst’ groups so many things together that are very different. It’s not about what it is, it’s about what it does. It’s important to know how about the third ventricle, how cysts on the brain are formed and classified. The consequences and significance of saying ‘harmless cyst’ is huge.”
“A big thing is behaviour and personality changes – emotions. I didn’t understand how much those things would change. I could have used warnings and resources for that.”
“It’s the same diagnosis and symptoms, but apparently, they’re ‘not related’. I’m told the cyst was an ‘incidental finding’ despite being in response to headaches.”
Getting support and information
“My specialists have been great Mr Laurence Watkins, Consultant Neurosurgeon, NHNN and Mr Harshal Ingale, Neurosurgeon, QMC Nottingham”
“There is no right or wrong way to deal with a diagnosis, but my advice would be to take some time to yourself before diving into the world of other people’s experiences until your initial emotions have settled down and you are ready to deal with that side of things. Spend time initially understanding what is going on for you and how you would like to deal with your own journey before seeking stories of other people’s progress – as all our journeys will be different and it is best not to scare yourself with ‘what ifs’ and comparisons to other patients.”
“Support groups would have been helpful and being signposted to brainstrust. It is useful to hear others’ stories.”
“I didn’t have much information at first. I found the Facebook groups the most helpful. They were supportive too.”
“brainstrust has supported me greatly. After applying for my brainbox, Molly reached out to me to introduce herself as the support specialist that covers my area and has since been a big support.”
Our monthly Colloid Cyst meetup community
We believe there is great value in having conversations with people going through a similar experience. If you are looking to speak to other people with a Colloid Cyst, come along to our monthly virtual meetup on Zoom. Keep an eye on our Events page for details of our meetups.
Colloid Cyst support, information and resources
A brain tumour diagnosis affects many areas of our lives and brings with it complex challenges. Things may never be the same as they were before, but brainstrust can help you to live well with a brain tumour, so you can have your best possible day – whatever that looks like for you.
We’re here to help you be in control of your care, so that you feel involved, supported, and confident that the choices you make are the right ones for you. Because you are more than a patient, you are a person. We can help you get back to being you.
brainstrust Resources
The following list of brainstrust resource cover a range of topics and have been created in consultation with the community and experts in the field so that they provide you with the information need to feel well-resourced and in control.
All of our resources are free to download from our downloads and resources page. As well as the resources sign-posted below, on this page you will also find our Know How resources which cover a wide range of topics from how to have difficult conversations all the way through to the practicalities of driving with a brain tumour.
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