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 :(

I'm sorry the people around you aren't stepping up yet. And absolutely organise yourself around what you want. Don't spare anyone's feelings- it annoys me when I see people holding back to avoid upsetting other people.

Dad got just over a year after his diagnosis, and didn't live the year he wanted. It was all about my mother.

Hope your consult goes well today.

So sorry OP. This is utterly shit and you have every right to be very angry, upset, worried and all the best. Hope you have a positive meeting with the doctor today and he/she has good options for you. I don’t know much about your situation specifically but I do know that treatments for things like this progress all the time. Wishing you the very best x

Hope your appointment went well yesterday and that they have a good plan in place

Sorry for a delayed update. I'm having surgery on the 4th. I've seen a scan and it is a small growth which is something and also I don't have to be awake during surgery which I was dreading having to do again. They'll have to look at the tumour once it's out before they decide what to do next. I feel a bit better at least having a date so I can plan ahead a bit.

That sounds like relatively good news especially about being allowed to be knocked out. Hope it goes well and you feel a bit better for Christmas

So glad you don't have to be awake 🤞 for more relatively good news once they've got the bastard out!!

That's a good start then. And as you say, you can organise around it now you've got some information.

Thanks everyone. Still a fucking shite thing to happen but trying to keep positive as much as I can

Thats a good start if it’s small but big enough for them to see and be able to remove. Hopefully means it’s in an ok place. Hope it all goes well for you.

Just stumbled on your thread and wanted to offer you and good luck. It sounds like your appointment went as well as it could in the circumstances - I hope the op goes well.

What an utter shit show op. Hope all goes ok, got to admit I’d get on the oil now

I’m so sorry

How are you doing?

I'm not terrible, I don't know really. We've been moving house and so much is going on with that, it's at least kept me distracted. But yeah with a week to go it is starting to get to me a bit more

@cfulton89 I'm so sorry to hear this. I can absolutely relate. I was diagnosed in 2015 after having a status epilepticus resulting in a coma. I had surgery weeks later (it was 4.2 x 4.5cm) I was 28 at the time with 4 young kids aged 8,4 and twins of 3. Like you, my life was turned on it's head over night. It's just the worst.

I had a recurrence in Oct 2018 so I opted for another surgery but sadly my 3 month post-op MRI showed an early aggressive recurrence. I then started radio and a year of TMZ chemo which I just finished in August.

I absolutely share your fear of leaving my kids without a mum, it turns my stomach when I think about it.

If you ever want someone to talk to who gets it, feel free to pm me

Cfulton keeping busy helps more than anything else does. My story is the same as yours and Bodyform/s. Grand mal in 2017, inoperable tumour, radiotherapy and a year of chemo to hold off more growth for as long as possible. I completely get how you feel and can only send understanding vibes.

Good luck for the 4th, sending positive vibes, you have got this, ❤️

Good luck for the 4th OP

Best of luck on the 4th.

Thinking of you.

Thinking of you. I hope everything goes well on the 4th and that you will be home in time for Christmas with your family.

Thanks guys. Found out yesterday I don't have COVID, small positives 😂 going in tomorrow evening ready for the operation in the morning. I will keep you posted

Thinking of you hoping everything goes as well as it possibly can.