I'm new here and looking for help/advice

[Missmarble]

A very close family member has recently been diagnosed with a grade 4 brain tumour. I am looking for help/advice on what to expect and how to be supportive.

[Shannon_TBTC Partner]

Hi Missmollymishchief, we are sorry to read about your relatives diagnosis and understand this can be quite an overwhelming time with lots of information.

We have a dedicated hub of information on our webpage about supporting friends or family with a diagnosis- thebraintumourcharity.org/l...

Depending on the diagnosis, we also have a range of information about tumour types including symptoms and treatments- thebraintumourcharity.org/b...

Should you have any questions or would like to speak to a member of our support team, please do contact us on 0808 800 0004 (Monday-Friday, 9-5) or you may prefer to email us on [e-mail]

With best wishes, Shannon

[astro-means-star Pioneer]

Hi miss molly,

Just being there can be the biggest thing in the world. It's a stressful time for all involved including you.

In terms of what to expect, it will depend on what and where they have, any treatment plans etc. It wasnt for a primary brain tumour ( secondary to breast cancer) but my partners nan, the best way could help was all the family around, we spoke to her, held her hand. She was very conscious of smelling ( bed ridden for toilet etc ) so his aunt waved around an air freshener and under her nose singing the shake and vac song so she felt more comfortable and dignified.

Listening to their needs and not neglecting your own. Every case is individual, it may be physical things like moisturise etc for dry and sore skin, helping them get used to new ways of doing things if they have any physical changes. Never lose hope its amazing what the human body can do, its about being there for them emotionally and helping where you can with any physical needs.

[Hidden]

Hi Missmarble, What a tough situation you find yourself in and how great you are here asking for advice. I am currently supporting a family who have a member in the final stages of a grade 4 brain tumour. What I have learnt is the need to enable that person to say what they like, eat what they like, do what they like and feel listened to and understood. Being physically there with them and hugging them if they are a tactile person.( Covid becomes a small concern). They may want help to plan their final wishes and funeral - don't be afraid of exploring those 'tough' subjects and do help the person to say 'good bye' to family and friends if that is what they will. Laugh with them if they are able to find humour, but at the same time offer dignity and respect with personal care. Depending on where the tumour is and what meds they are on, he/she may appear to have personality changes, labile emotions, loss/deterioration of speech and language, absences and/or seizures, reduced physical mobility and appetite and sleep changes. I wish you all the strength and courage to help your family member at this time.

[Missmarble in reply to Hidden]

Hi Hippoptamus. Thank you for your reply and advice, having never been in this situation it’s difficult to know how to deal with it. I am trying to be supportive with the practical side of things and also being someone they can talk to. You mention exploring tough subjects, do you have any advice on how best to approach this? The person in question does not want to know what their prognosis is, which I understand is their absolute right to do so. I have done some research on the internet regarding stage 4 brain tumours and the outlook seems very bleak. Is it best to broach the subject with them or let them go at their own pace? I just want the very best for them.

[Hidden in reply to Missmarble]

I don’t profess to be an expert, but patience might be the way forwards - allow them time to choose to talk about their terminal diagnosis. Doctors give estimates as they cannot be accurate. I am currently supporting a friend who was given 2 months to live & he is in his 4th month! He is very open about his impending death and chooses to make jokes as well as be serious. There is no right or wrong way & that person’s life is there’s to live as they choose. For some it is best for them to not think or talk about the end, but making them comfortable to be able to talk is important. They may be protecting others from the ‘difficult subject’ so make sure they know they are safe to explore anything with you. Broaching the subject - talking about your own thoughts on life and what wishes you might have or talking about a mutual a person’s passing and what their life meant to you both. It may also be worth asking your local hospice about how one makes space for these conversations. Wishing you courage and empathy with supporting your relative. X

[Missmarble in reply to Hidden]

Thank you for you lovely reply. I have been taking baby steps with the subject and asking a little more each time I see them, I am hoping that this will make me approachable if they wish to say more without pushing them to talk about something if they do not want to. My main concern is that I don't want them to have any regrets about things that they haven't had time to do because they didn't want to or couldn't face up to the reality. I am hoping that when they come to the end of their chemo and radiotherapy the subject will arise. Having never gone through anything like this I don't know what to expect which is the reason I reached out on here and I appreciate your help and advice so much x