How can I best support a friend with a brain tumour diagnosis?

[Bangonthedoor]

Hello everyone.

My friend has recently been diagnosed with a cancerous brain tumour after initially being reassured it was benign. She’s waiting to hear back after further testing to see how aggressive it is and what treatment will look like.

My question is, how can I help her best? Obviously I’ve told her I’m here and have offered to do whatever she needs me to do. Of course she’s very independent and keeps saying she’s fine and doesn’t need anything. I know she’s completely and utterly terrified.

If anyone else has been in this situation, what did you really need at this time? Apart from not having a tumour at all! What really helped when you were feeling low, scared and in limbo?

My friend is still recovering from brain surgery and having physio to build her mobility up again. She doesn’t have children and lives in a first floor flat on her own.

I just wish I could take it all away for her but of course I can’t! Instead, please tell me how I can be useful?

Sorry you’re going through this with your friend. She’s lucky to have you.

I hope her tumour is treatable and advice will likely vary depending on the type and treatment. For now I would try and support her by being there to help practically - cleaning, domestic chores, batch baking healthy meals for her freezer. She will be very tired from surgery and any potential treatment so this and being there to talk is the best help right now.

My experience is with someone whose tumour wasn’t treatable so I took over a lot of the domestic burden, shopping, cooking so her husband and children could just be with her. I also facilitated and paid for some alternative health treatments she wanted to ease her pain and discomfort.

BT is a journey and this is likely just the start so let her know you’re here for the long haul, whatever that looks like.

Thank you so much @Iamthemoom i appreciate your advice. I think We’re always very good at wanting to help but not always knowing how!

Once you know more please do tag me if you want any specific advice at each stage. My family’s been through this twice once without any treatment and once with so hopefully I will have the answer to most questions. I really hope it’s good news for your friend and treatable.

Don't say 'things like 'you will be ok' - you don't know that, or talk of fighting it (if she doesn't), or of being 'brave'. Let her define the diagnosis her way - even if it feels odd/strange to you.

Don't go in with vague offers of help, as you put the onus on her to come up with something, which is exhausting on top of everything else she is managing, but rather 'I'll come around next Wednesday and clean the bathroom/kitchen'. Don't overstretch yourself, as you could end up burnt out.

Thank you, this is really helpful to be specific and suggestive rather than just offering. X

Be specific. Concentrate on practical things like cooking and cleaning as well as the emotional support. Don’t unintentionally make her feel pitied. When I had cancer that was the thing I really detested. You sound like a great friend. I wish you both all the best.

My friend passed away from a brain tumour, it was utterly horrendous, my recommendation would be to be there for her, visit, listen, don’t reassure, just listen, offer help if required, but don’t treat her like an invalid, offer to take her to hospital appts, pick her up, visit when she’s in there, it’s the being there that counts. The listening. Call her to check in, but don’t go on about it, ask her how her day has been chat to her,

please do not do something like say I’m coming Wednesday to clean your bathroom, as someone suggested, even healthy you’d not want that as it’s so intrusive . She hasn’t turned into a different person, where you dictate your coming round and what you’re doing. She may not want you there on Wednesday. She may not want you cleaning her bathroom.

try ro give her some normalcy, buy her foods she can stomach, it maybe protein drinks or bars, offer to take her out if she’s feeling able, a spot of lunc or a coffee.

so having been through it, it wasn’t about the cooking and cleaning, it was about being someone reliable who demonstratably cared and was there to listen, checked in at the right time, always made time to visit.

I am so sorry to see that.

I cared for my sister through the horrible brain tumour experience. It's often not appreciated that a benign brain tumour can be equally or more dangerous than a malignant one depending on size and location. Benign brain tumours can become malignant.

I agree with previous posters. Just being there would be amazing for her. DSis had loads of friends but they all dropped off as she stopped being the carefree, funloving, pal that they knew. There can be personality changes, mobility changes, seizures, mental capacity issues - some temporary, some permanent, some as a result of the tumour, some because of the treatment. There can also be big decisions and just listening to clinicians can be overwhelming. I found myself saying the words "But what will that mean?" so often to the consultants.

DSis became very anxious about treatments and tests. I would go with her into the MRI scanning room and the staff had rigged up a mirror device so we could maintain eye contact during the scans. I held her feet so that she knew I was there. Tiny things can be so important - and it also made it easier for the staff. I also sat with her during chemo sessions and waiting on radiotherapy - she developed an anxiety that resulted in toddler-like melt downs. (She was the most laid back person ever before this).

Horrible thing to think about but it would make sense to get affairs in order ie POA, will in place, benefits, parking pass. McMillan were very helpful with all of this.

The Brain Tumour Charity has a lot of good information on its website. Most importantly - look after yourself. It will be a tough journey for you, too.

Thank you everyone for all your helpful comments and advice.

its really useful to hear things from those who have experienced it first hand and I’m aware it could have been a trigger for some of you, so I do appreciate it.

I have found over the years that one of the best things to do is to be the the conduit for friends, by this I mean set up two separate WhatsApp, Facebook or phone message groups that you control on her behalf. You can use these to send appropriate messaging to friends and family, and acquaintances. There is nothing worse than having to send loads of msgs to everyone saying the same thing, but a crisp, “Friend had an MRI this morning, the lump has not grown, unfortunately walking is still a challenge but Milky Bars are still tasting good.” And, “If anyone can accompany Friend to the next appointment, she would be grateful.”

Next be explicit about visits, say Friend can cope with 20 min visits but no longer and hoick people out if they stay longer.

Ask if it would be helpful to put on a load of washing when you are there, offers of help to do specific things are easier to accept or decline.

Finally, remember to laugh, dig out old pics and label them up…

The thing i would caution about this is that you don't want to be the gatekeeper - you could unintentionally make your friend feel cut off from her other friends.

Spontaneous messages about whatever /normal concersational dynamic wih her friends and family are really important in making her feel like she hasnt lost her entire life.

However it can be helpful to only have to give treatment updates once.

My partner has a brain tumour.

Offer to go to appointments with her.
Stay in touch and offer to go round, keep her company, accompanying her on walks, drive her places (she probably wont be allowed to drive now for a while).

Help her with the basics of taking care of herself.
Help her to feel loved and still connected with the world.