Brain tumour has recurred :(

[cfulton89]

Just need a place to vent really. For background, in 2017 I had a grand mal epileptic fit, got rushed into hospital and found out I had a fist sized primary brain tumour. I had to have surgery while awake, followed by 6 weeks of radiotherapy and almost a year of chemo. I miraculously got pregnant ten months into what was meant to be a year of chemo, but obviously not intentionally. However the pregnancy went perfectly, the tumour has been unseen since and I have a wonderful baby girl.

I think now it's started to come back I'm a lot more scared. Partly because I know what's coming and more so because I don't want to die and leave my LO. My husband is really good and supportive and I'm lucky to have him through this but the odds aren't great for a second tumour. It was a grade 3 before, they usually grow back worse. I've managed once but I can't leave. As ridiculous as it sounds, I'm not ready. Within the last few years we've got married, had a kid, we literally just had a mortgage approved and are getting keys on Monday, I'm studying part time to get a better job and we were going to try for another baby. I'm just so gutted that this has fucked it up. I was happy :(

That's really shit

Yep. And as dumb as it is I get really annoyed with everyone telling me it's going to be fine. Because it is such a ridiculous thing to say. There is only so much you can do for a brain tumour, they're not really all that curable. And the thing is I'm already lucky. I've met people through this who have already gone, people who's tumour came back after 9 months, I've already managed nearly 4 years

I’m so sorry to hear your devastating news. It’s just awful. Could you ask the moderators to move this to the cancer forum? There is so much support on there and it was a great comfort when I had breast cancer. Sending you big hugs

Are you sure? Or are you worrying about symptoms but not had confirmation?

Whichever, that's awful for you. Rant away.

You've done a hell of a lot in the last three years! Just keep going a day at a time.

I've had an MRI scan. Requested it because I didn't feel right but I get them every few months anyway.

How do I get it moved? Sorry, new here!

My late husband had the worst Possible brain tumour that you can get. We didn’t have long with him From finding out. You are right brain tumours are cruel, utterly shit and people don’t understand the seriousness of them at all. We like you had just become settled 2 kids, just moved house, new jobs, money was ok then bang he got diagnosed.

All I can say to you is get the medical
Help, get the diagnosis and prognosis- plan accordingly and then Try to live life to the full because despite any prognosis no one really knows how long we have left and you can make every day count for you and you kid.

Crap crap crap. I'm so sorry.

Find the friends you can be honest with!!

Can your local hospice or similar find you specialist counselling?

It's so unfair and I feel angry on your behalf

@Fcuk38 I'm so sorry. I've seen the absolute shit it causes and it's just a total mess. I hope you and your family had the best time before and that you're coping well now.

@RandomMess we have a Maggie's at our hospital. They were great last time, obviously it's a bit different with COVID but they're still available. So once I'm done with the surgery and know a bit more about the general plan I'll probably go to them again

Oh gosh - I don’t know how to move it. I think you report the thread and ask Mumsnet HQ to move over to the cancer forum which is under General Health. Hopefully someone can confirm this? Sorry I’m a bit rubbish at site stuff x

@Purplewithred thank you. It's a shit situation that nobody around me is admitting to really.

So sorry you’re going through this

I’m a firm believer in cannabis oil being helpful in treating brain tumours. If you look up Rick Simpson oil, you’ll see what I mean. There’s loads of anecdotal evidence that using the oil can prolong life. There’s medical professionals who believe it to be helpful as well. There’s a lady from Scotland called Lynn Cameron who was diagnosed with a Grade 4 GBM, was given 6-18 months to live and is still here, 6 years on, fighting for it to be legalised.

Obviously this type of thing isn’t exactly legal but I’d be trying anything I could to increase my time with my family, legality be damned.

Also be selfish!!

Make a bucket list of things you want to do and who with etc make the most of the time you have right now even in the little things.

Aye it's a crock a shite and no mistake. When do you get the MRI results? I suspect nobody wants to admitted because they don't want to upset you, not realising that you need them to listen, and of course you will be upset, it's shit, it's not fair, and you can be angry, and sad, and frightened and any other host of emotions you will be feeling.
I'm sorry op, if it has come back then it is utterly crap

Oh already had the results. Definitely back. Got virtual appointment with surgeon on Tuesday to arrange surgery and generally discuss everything. I am actually interested in trying the oil, I debated it the first time but didn't go for it. Probably give it a shot this time, can't really hurt.

I've asked MNHQ if they can move it for you x

I'm very sorry you're in this dreadful position.

When do you expect to get the results from the MRI?

I won't tell you it'll be ok, but can I suggest you might be getting ahead of yourself? It might not be back again.

Your DH sounds brilliant, soend Max time being held by him and cuddling with DD xx

Sorry. Cross listed with you .

Fuck
Fuck fuck fuck.

Go for the oil. Fuck whether it's legal or not. I actually thought it was, but 🤷🏻‍♀️

I am so sorry. Such shit news. Life can be so unfair.
It does often come back worse but not always. Where it is and how well they can operate is also really important- they operated successfully twice on mum who started with a L4 and she had 5 years rather the expected 6-12 months. But everyone can find great stories or awful ones, this one is yours. Be clear with people that you want them to be honest with you, both family, friends and drs. I am so sorry for your sad news.

Sorry it's bad news. But hopefully as you acted quickly they have more options to help you. Say what you want because those that matter won't mind and will try to respond as you prefer.

@BestOption don't worry! Thanks for that. Yeah it's just put this year which has already been generally useless at a shit end. But yeah luckily I have an auntie married to a (very nice) guy who can get his hands on some oil for me.

@Wisteria1979 yeah I'm jumping a bit to worst possible scenario really. Can't really tell until after the surgery so we can see what we're dealing with.

I’m so sorry this is happening again, I can’t even imagine how scary it is

@BestOption the real stuff with the THC, the component that has actually been shown to help tumours, isn’t legal. CBD oil is legal because it only has very trace amounts. I’m a huge believer that it should be made legal altogether. My sister has a brain tumour and if hers recurs for a 3rd time, ethically or not, I’m spiking her with it.

Ah I am sorry, that is truly shit.

My DH has lung cancer with brain mets - he'd got 10 - is gamma knife an option ? Recovery is so much better

I'm sorry this is happening to you again, it's really shit.

As I understand it and I could be talking out of my arse The CBD oil doesn't directly affect the cancer cells, it gives a super boost to your immune system so it can attack the cancer cells. I'm not sure about the blood brain barrier and how it would work with that though.

You can legally buy it, I have bought some for my father, I think it was called CBD brothers, but I'm not sure if there concentrations are enough. There is a video on youtube of someone growing a particular strain that is high in CBD themselves and processing it.

Wishing you all the best.