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 am thinking of you too.

Have you tried her on the toilet with a special seat for her rather than a potty? One of my DS went straight to the toilet as he wanted to do what the grown ups did.

cfulton89 just wondering how things are x x

Hi OP, you've definitely been through the mill. I have a friend in a similar position - it's difficult to find words that might help, so instead I'll contribute to your gofundme. I'll also share it on social media. Good luck my dear, and hope your toddler's potty training has paid off x

We are there on the potty training!

Good news on the potty training. I’ve sent you a small contribution. I’m thinking of you and hope you find a treatment that works for you

Excellent news on potty training!!

I will also send you a little contribution.

@cfulton89
How are you doing?

Still here, my bloods are not great, every week two vials wasted, I'm on oxygen therapy which is meant to be helpful. The bloods today were fine!

Ahh bless you
Are you up and about?

How are you doing op ? Xx

Hope things are going well for you OP

Thinking of you and hope you are doing well 💐

Me too. Check often to see if any updates x

I am still here! Just not on the phone because I've had some problems with my nerves in my hands, but all the chemos are not working so we're just looking for other options

I hadn't seen your thread before today, lovely to get to the end and find you still posting. I hope you find some options

cfulton89 So very sorry you're going through this. No "advice", just couldn't scroll past though. best of luck xx

Another one here who keeps checking in, and wishing you every strength 💐

Wishing you strength. My FIL has stage 4 brain tumour cancer and he's into his 6th year. Still going strong! Remarkable.

Thinking of you OP.

I am also checking in OP. I am in very similar situation with a return and a 3.5 year old DD. I have a recent thread on here that has lovely support and ideas but I’m too sick to implement them. Thinking of you with all my heart life is so awful and devastatingly unfair sometimes

[quote cfulton89]@Purplewithred thank you. It's a shit situation that nobody around me is admitting to really.[/quote]
I'm really sorry @cfulton89
Seriously hope something can be done for you.

Cancer and brain tumours especially seem so 'Different', {I have no medical knowledge}, but that with people I know of personally, one person is alive decades later after diagnosis and treatment, and the other person {in their late Sixties} died very soon after initial diagnosis, which was a horrendous shock to all who knew them.

I lost my lovely Mum due to a disease which is now curable, as a toddler, and talking to people as an adult about it, It seems that relatives who are close to you go into some form of 'Denial', as it seems so cruel and wrong for young people with children to be seriously ill, or die.
People feel powerless, perhaps.
''If I don't acknowledge it, it isn't happening'' kind of thinking?

It IS massively shit.
No way around that.

Life just isn't ''Fair'' for many people.

Best of luck , Fulton :)

Seems there

@cfulton89
I see this is an ''Old'' Thread.
Hope you are doing OK.

Hi, I have this the same aswell just longer. I am under wonderful hospice now but NOT to die just care and social. when mine came back it stayed a 3 thank god. . Have you had mri and onco meeting to confirm this horrors return? Had they told you what treatments you can still have? I am so pleased to hear you have a good wonderful husband, enjoy your family, I have done years at grade 3, feel free to message me, take good care, try not to worry and maybe call your nurse in morning, I hope you still have one, enjoy your family. I am getting older now so brain tumour, brain injury and menopause oh dear 🤐