I don't know how many people are using the Brain Tumour Charity's BRIAN APP, which is an extremely useful tool to use. A recent e-mail I received outlines the benefits of using BRIAN:-
Did you know that BRIAN has lots of handy tools to help you navigate life after a brain tumour diagnosis?
BRIAN’s Benefits Checker is an easy-to-use tool that can quickly help you check what financial support you may be entitled to based on your current situation.
The Clinical Trials Finder is another handy tool that helps you search the clinical trials database for trials that you may be eligible for. All you need to do is answer a few questions about your diagnosis.
Using the Chat Rooms function is a great way to connect with other BRIAN users and talk about your experiences in public or private chat rooms.
If you’re feeling a little lost after your diagnosis or latest round of treatment, the BRIAN Navigator is the perfect feature for better understanding what should happen next. You’ll get a rough outline of what to expect, a guide to what you can do to best prepare yourself and a list of questions you should be asking your healthcare team.
The BRIAN Insights feature is a great way to compare your experiences to others. You’ll be able to explore visual representations of insights pulled from data provided by BRIAN users and national datasets we have access too - including how many surgeries each hospital has performed, which treatments people have first after a diagnosis and how many people each year are diagnosed with primary brain tumours.
To find these and more, all you need to do is log in to the BRIAN app and tap the “Get support and information” button on the home screen.
I use BRIAN every day to monitor my quality of life and complete the challenges that are available - these are linked to research projects, so by completing them I am providing important data for the researchers.
I new feature of BRIAN is that you can link it to a Fitbit, or other health monitoring gizmo. I have BRIAN link to my Fitbit, which has proved to me, that I am doing far more exercise than I previously thought I was doing.
An important feature of BRIAN, which I do like and recommend is the 'Account sharing' function, where you can invite and allow others to access your data, such as your Oncologist, health professionals, etc. I have enabled my Oncologist to access my BRIAN data, so that she can also review this data prior to our review meetings after my MRI scan. When I asked her if she would like to have access to my BRIAN account, she said 'I was the only one she knew who was using it'!
If you don't already use BRIAN, please do consider using it.
Written by
Tansi75
To view profiles and participate in discussions please or .
Thanks for the info. My sister was diagnosed with a brain tumour and had surgery in June. I have been telling her to download the app and have now passed on the advantages as per your post, however she is struggling to type which she has only recently noticed. She starts radiotherapy and chemo on 1 Aug. I have given her details on your advice regarding cutting out sugar etc and she is keen to hear more. She has many questions and I have suggested I help with these posts. Could you give any suggestions as to how she could hear your positive experience as I think this would really help her.
If the link doesn't work, just google 'Cancer In Sight' and select the Dec 2021 blog. There are some other articles on the Brain Tumour Charity's website on their news section, under 'Stephen'.
Whilst your sister goes through her treatment, she should listen to her body and sleep when it tells her to. I spent a lot of time snoozing on the couch during mine. I would also recommend doing things to keep her brain working, I used jigsaws, reading and crosswords to do this. She should take the chemo tablets with a pint of water, to help the tablet be absorbed into the body quicker. I drank ozonated water when I was on chemo and used a water ozonator to do this - I use a Sota one because it is portable and ideal for breaks away, etc. There are cheaper versions available on line.
If you and your sister have any questions, please do just ask away and I will reply as best as I can.
Is your sister using a computer or mobile phone for BRIAN? I mainly use my computer, but started using the mobile phone APP earlier this year and now use the challenges section on a daily basis. My typing skills are not as good as they used to be, prior to my tumour, but they are better than when I first started typing after treatment and recovery.
No matter what, stay positive and laugh as much as possible. I hope your sister's treatment goes well and she is able to maintain a good quality of life during it. I think some people try to rush their recovery, when the body and brain need time to recover from everything they have been through. She has nothing to worry about the treatments, just take everyday one at a time, as with every step, one at a time. My theme songs since 2010 continue to be Travis Tritt's 'It's a great day to be alive' and Russel Watson's 'Faith of the Heart' both have a deep meaning for me.
Take care, stay safe, well and hope you both and your families have a great weekend.
Thank you so much for your reply and all the excellent advice, the blog post is amazing and inspirational and I am sure my sister will think the same. I have forwarded all the information to her and will speak to her later. I have been searching for anything positive that I can find for her and when I found this site and saw your posts, I did buy the ozonated water that Holland and Barrett sell, however I'm not sure if this is the same. She has cut sugar out of her diet but has also cut out carbohydrates which has really limited her options! I have also been telling her to ask her oncologist about cannabis (before reading your post) and to read about the Sativex trial you took part in was very interesting, she needs to ask about this. To read your experiences that is specific to a brain tumour is more helpful but to hear your positivity is the best and I will listen to those songs later so thank you for that suggestion too.
I think my sister will have many questions for you! She has been talking of fasting before her treatment starts (think she read about this), I'm not sure I like this idea and wonder if you prepared for your treatment in other ways?
Sending very best wishes to you and your wife and thank you so much!Lisa
I'm not sure about fasting, but do not think it is a good idea. The body will be going through a lot, so needs to be in the best possible condition prior to and during treatment. When I was on chemo and didn't feel like eating much, my wife gave me toast and a dish of rice with some lemon juice in, which helped and was easy to digest. I also took my chemo tablet shortly before going to bed, so I could sleep through any possible side effects.
The other thing she should consider is boosting her immune system, I did this during my treatment and continue to do so using Higher Natures ImmunePlus tablets. They are specifically designed to do this, I also take their Complete Omega tablets, which are good for the brain too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
