Communication between the brain tumour patient and their family and friends (part 1)

Last weekend, myself and 20 other Young Ambassadors of The Brain Tumour Charity met for the first time. It was both fascinating and emotive being around so many other young people like myself who were so heavily affected by Brain Tumours. Most impressively, it was amazing to experience how motivated we became to make a massive difference in the world of brain tumour research.

We all had the chance to share our stories, the amount of variation in these was astounding: every brain tumour story has it's unique differences and certain sets of challenges. We were able to help each other through these thought processes and contribute whatever advice or lessons learnt from experiences that we had had.

One of the major issues that almost everyone had a resounding issue with was the communication between the patient and the family and friends. In some cases it felt awkward, in most cases it felt un-equipped and in a few instances patients were left isolated. We felt this really needed to be addressed.

We can all acknowledge that brain tumours are not the easiest and simplest talking point but in order to communicate diagnoses, navigate the path the disease is taking the patient on and raise awareness, it does need to be talked about to some extent.

We designed some simple surveys to understand what we, as Ambassadors, who have no issue with publically speaking about brain tumours, can do to help current and future generations of brain tumour patients and their affected family and friends.

Our aim is to arm all parties with facts, tools, contacts, resources and give real life examples so that the whole entity knows that they're not alone. This blog post will share some survey answers and will be the start of a much wider conversation that will involve videos, posts, web pages and The Brain Tumour Charity.

You won't be surprised to hear that Search Engines were the first port of call for patients and family/friends alike. We want to reduce the amount of people that reach for Dr Google as so many of the statistics you'll find online are both outdated and untrue. The Brain Tumour Charity has a Just Diagnosed Pack that is free, factually correct, informative and provides a range of contacts for the user: when you order it you can choose if you're a patient or carer, colleague, friend etc...

The second most common port of call for people looking for brain tumour information was personal social media pages, blogs and real life stories online. We have duly noted this and will continue to post as much high quality online content as we can. Some great brain tumour blogs are:
https://www.upperstoryclub.com/
https://asenseofbraintumour.blogspot.com/

A good number of patients surveyed had spent longer than one month deciding on how to tell family members and friends due to the negative connotations associated with brain tumours. They didn't want to be treated any differently or with a profound sympathy. A lot of family and friends associated the words "death, terminal, suffering and malignancy" with their loved one having a brain tumour in the first instance. We know these words are not true to each case and will work tirelessly to promote the positive stories: having a brain tumour is not a death sentence and thus no patient wants to be thought of or treated in any way associated to these words, they are not their disease.

Ways that we can stop negative connotations towards brain tumours include: promoting positivity when speaking of the patient. Focusing on quality of life rather and their small achievable goals rather than what is going on in the grand scheme of things. Understanding from the patients perspective that brain tumours occur for no reason at all, they can't be helped and they may have been apparent for a number of years- you didn't treat them any differently when you didn't know about their diagnosis. 

Isolation: many brain tumour patients feel isolated after telling family or friends about their brain tumour. This may stem from the reaction of the recipient: denial, fear of losing them, distancing themselves to prevent themselves being hurt, or plain ignorance. We ask that family and friends listen with intent when in a conversation about the patient's brain tumour and you simply make the patient feel like they're heard. Distancing yourself from the patient will lead to regret and sadness for both parties. 
People who admitted to isolating their friend or family in our survey most commonly answered that they did so in an act of self-defense. The second most common answer was because the patient was becoming someone whom they did not recognise. I believe that both of these answers are valid; but I wholeheartedly believe that you have to make sacrifices and support your family member or friend as they would if you were in their shoes. Self-defense is no excuse, you have to address this; loss is a part of life and to not embrace it as you would with other milestones to protect your own feelings is cowardice. To isolate a patient is to leave them when they need you most. If you feel this resonates with you at all this is your reminder to ask your loved one how they are today. Rather than running from the problem, use your words to address how you're feeling; everyone can take a break sometimes, and that way the feeling of isolation for the patient can be lessened.

We have also learnt that a lot of patients prefer their next of kin to tell surrounding members of the family or friends as this is limits the emotive response that the patient has to personally endure. However, if the next of kin were not present at diagnosis it can still be difficult to navigate your way around the information and questions. 90% of the survey respondents did not know that The Brain Tumour Charity has a support hotline that is free to call to find out more as a patient or as a carer, friend, colleague etc...or for the more tech savvy; an online live chat. You can find that here. I know this team personally, they are amazing and if you ever need to chat: please call them! Another helpful tip if you're telling someone about a diagnosis is to direct them to this webpage, especially if you don't fancy answering too many questions or you simply don't have any answers to their difficult questions.

We want to specially reach out to friends and colleagues to say: please don't treat patients any differently if you don't need to. Please just ask if any adjustments need to be made or if there's anything you can do to help them. If you're at all in doubt, please call the charity support hotline and you can discuss plenty of examples of how to adjust a workplace, form fundraising and respite ideas and understand what the patient might be going through.

A lot of families and friends found it helpful to set boundaries when it came to conversation around the brain tumours. This is especially helpful if the patient is emotively raw about their diagnosis and includes the patient, and only the patient, letting others know when and if they want to discuss the tumour. Examples of this are: sticking to facts, no 'fighter' or 'warrior' talk, no discussion of the brain tumour around the patient until its been brought up by them, conversely, agreeing to speak about the brain tumour at any time with an open and honest manner. This exercises the patients right to control a situation that is for the most part, out of their hands.

In the survey, most family and friends reported that they felt it was inappropriate to ask the patient about their prognosis unless the patient has brought it up. We as Ambassadors would agree with this unless the patient is absolutely always open for discussions of this sort. We also want to encourage family and friends to acknowledge that not all brain tumours have prognosis' and once again to consult Dr Google would be a wrong decision. Some patients find this a very private matter and some have chosen not to know. We understand it's a natural question to want to know the answer for so if it is weighing on your mind with great intent then please only consult a registered brain tumour charity web page, leaflet or support network about this. In any case, it will still only be a guess and we urge you not to focus on this aspect of the journey. Again we need to reiterate, the patient is still a person and not their disease.


In the next blog we will be discussing how symptoms make be effecting the patient and how you can help facilitate and support them in many different ways.

We hope you have benefited from this first blog in the communication series. We are really trying to stimulate more conversation around brain tumours. If you have any additional thoughts, hindsight advice from your own experience, or would like to see our survey results, then please get in touch at lobeyourselfblog@gmail.com

By 2020 I am aiming to have raised £5000 for The Brain Tumour Charity to help #FindACureSooner and ensure continued support and readily available resources for patients and families of those who have Brain Tumours. Please click on the link and donate, if all of my readers donated £1 I would have met my target already! https://www.justgiving.com/fundraising/moneyforbrains