New diagnosis

It must be a couple of weeks until your op - I’m wishing you an easy a time as possible before and after that ️

’I don’t know what I don’t know’ is a good summation of the situation. I was diagnosed with an astrocytoma grade 4 in 2022 and am doing pretty well so far, after a craniotomy, chemo and radiotherapy. But I’ve never felt that there was any definitive answer to many of my questions. It feels as though I’m telling my doctors how I’m doing rather than vice versa, and that may be something you have to get used to. I wish I could be more helpful, but I’m happy to answer questions. 

As for talking to your consultant, ask them anything that you’re worried about, no holds barred. Practical questions are good, eg about travelling, eating, or anxiety (talk to your GP in advance so you’re ready for any lows; you might cope fine but it’s good to have medical back up)

I can’t think of anything else right now but I’ll be thinking of you over the next couple of weeks - waiting is the worst. Eating and sleeping sounds good! Though a bit of exercise was also helpful for me, even just moving around the house. Do whatever makes you happy or relaxed, and put yourself first if you can. People will understand, and if they don’t, they’re not the right people to be around right now

 long message! But I hope something in it is useful, if only the fact that you’re not alone - we’ll be here for you, and wishing you good luck and wellness, Alex xx

Thanks Alex,  for your reply, and yes it has been useful. It does help to just write what you're thinking and realising you're not alone. I do have support at home but I dont always want to say what I'm thinking. I felt quite down today but a bit more settled somehow. I upped my exercise today and hopegully going to venture out tomorrow. I'm glad you're doing well, thats also good to hear. Rosemary x

Hi Rosemary, it sounds as though you understand yourself pretty well, though it’s uncharted territory. Not being able to tell people my thoughts was a problem for me too, especially because some were quite dark and I didn’t want to worry my family. They’re great, and very supportive, but I gradually felt safe opening up to friends, and even finding the humour in my situation. It really helped, and made me feel more ‘normal’ about everything. I hope you can find the right friends, but if you’re not ready to share with them, then this is always a safe place to offload ️

I hope you’re still feeling settled, and enjoy your walk - it’s still really foggy here!

Alex x

We're lucky we dont have fog. I have already opened up to my school friend of 50years, we have so much history and know each other like sister. My other close friend died on the 5th Dec after an 18 year battle with breast cancer, thats been hard but I keep hearing her say 'you've got this" and wearing the nraceley she gave me engraved 'never forget how strong you are'. My siblings are all aware, its tricky, my dad died from a brain tumour our 35yrs ago at my age. I think a few have been triggered. My mum doesnt know, she's 93 with dementia, no point really but it makes it hard to phone her. I do feel stronger today and long may that continue. Thanks Alex for responding, it is really nice of you and it has helped enormously. Rosemary x

I’m sad for the loss of your friend, but glad the other friend is just the person you need right now. I remember being told I was strong at the beginning, and it upset me a bit as I didn’t always feel strong, but now I realise there are many different ways to be strong. Your friend was a smart lady 

My dad died of a brain tumour too, ten years ago, but it was in a different part of the brain and affected him very differently. Mine’s in the left temporal lobe so affects my word-finding a bit, but at 52 it’s not much worse than my friends! So that could be something worth researching beforehand, so you feel more prepared. Unless you don’t want to of course - nothing is the wrong choice here if it helps you

Chatting is helpful for me too, so I’m happy it helps you! Chat any time, no pressure, and stay strong, Alex x

HI Romy60

a warm welcome to the online community. So sorry to hear about all that you are going through. Life's cruel. Not knowing exactly what's going on is a thousand times harder then knowing in my experience.

I supported my late husband through the three years of his stage 4 brain tumour journey so I can empathise with what you are going through.

There's a great section in the main website that might help . Here's the link

Cancer diagnosis | Macmillan Cancer Support

I'm not big on giving advice but one thing I would suggest is to write down any questions/fear/concerns that you have and take those notes with you to the pre-op appointment. If something is preying on your mind, no matter how trivial it might seem, ask about it.

I'd also steer clear of Dr Google. It's so easy to end up down a deep dark rabbit hole when you go digging around there. Focus on what you know and not the what ifs (if you can)

For now though take each day as it comes and see what you feel like doing. There are no rights and wrongs here. Just take this journey one step at a time.

This is a safe and supportive space as you've already seen so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear

For now though I'm sending you a huge virtual hug and lots of positive energy. 

Love n hugs

Wee Me xx

Thank you, i think any chat is good for me and i will speak to support services. Its good to feel others understand whether as someone with a tumour or as a partner. My partner is struggling at the moment, i guess its hard to watch. And thank you I'll accept that virtual hug Rosemary x

My understanding is my tumour is on the right above my eye, more than that i dont really know but i have made a list of questions so hopefully understand more soon. Thanks for chatting I real appreciate that, its helped so much Rosemary x ️

️ and another hug, because you can’t have too many