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Original poster

Brain tumour has recurred :(

200 replies

cfulton89 · 08/11/2020 16:02

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 :(

OP posts:
WindyRose · 18/01/2021 22:30

Thinking of you OP and truly hope the Radio goes Ok. Words seems so inadequate at these times, but please know I'm thinking of you and sending love.

Flowers

HelenUrth · 18/01/2021 22:44

Best of luck to you OP, I hope knowing many people here are thinking of you & sending positive vibes will help x

KTB19 · 29/01/2021 11:34

I've been thinking about you OP, hope you are doing OK. Xx

schnubbins · 29/01/2021 11:43

I have just read your post .You sound like such a lovely person and my heart is breaking for you.My husband had a brain tumour 5 years ago which was not detected for a long time so I know the difficulties of the whole diagnosis.He is doing really well .I'm going to say a little prayer for you that all will go well. Best wishes to you and your family.

LeopardPrintKnickers · 29/01/2021 11:46

Oh OP, only just seen your thread and just wanted to let you know you have another friend in your phone, another stranger cheering you on from a distance. Sending you love and strength and hoping desperately that you get some positive news soon x

Original poster
cfulton89 · 29/01/2021 18:30

Thanks everyone, it's going okay but it has definitely been a tough couple of weeks! I'm glad it's happening in lockdown though because I don't have to go anywhere or socialise. currently in bed before the baby because today was a tough one.

OP posts:
Waitingtomove · 29/01/2021 18:38

My brother went though a lot of what you describe, just wanted to wish you all the luck in the world. Keep fighting. It’s an evil disease

GU24Mum · 29/01/2021 19:34

Good wishes from here too - I've been following your journey and really hope you make good progress.

Original poster
cfulton89 · 07/02/2021 18:14

Hi everyone. Just going to have a have a minor rant because my husband has been a bit shit - I'll pause to say that he has been good in the fact that he does all the shopping, he sleeps in another room at the moment because he snores a LOT, and he has to drive me to hospital every weekday. So he isn't being a useless shit or anything, but when we get back home he just leaves me to it with the baby. And stays up late drinking and playing games (again, usual), so I have to get myself and the baby ready in the morning along with taking my tablets and timing my breakfast, then go to hospital, alone. I feel completely alone all the time, or I would if it weren't for the baby.

OP posts:
user1497873278 · 08/02/2021 16:02

Ahh men they can be so bloody selfish, I don’t even think half the time it’s on purpose they just don’t get it. If you pointed it out, he would probably come out with but I’m doing xyz. Having to rely on them is hard going at times like this. Women can multi task, men can’t do this even with no health problems, no wonder we are the more resilient sex. Oh and I love the way that even in worrying times they can lose themselves in their gaming, if only we had it that easy 🤨 😤

Soon2BeMrs · 08/02/2021 20:00

How you feeling @cfulton89 x

myhairygoat · 09/02/2021 08:52

I'm so sorry to hear that. Men can be utter arseholes. When I had cancer, mine also vanished into drinking and seeing his friends. He was no support whatsoever. It was his way of dealing with it, but it made me furious. I relied heavily on friends and family. He delivered a heartfelt apology quite recently, but I still hold a grudge! I hope your treatment is going OK. I'm so sorry that you are going through this. The cancer support forum is also a really good source of support and information. Thinking of you x

Original poster
cfulton89 · 09/02/2021 09:35

Thanks everyone. I'm alright, get the odd sicky day, but only got 7 (week)days of radiotherapy left before a lovely month off. Getting my first vaccine soon so I guess that's something?

OP posts:
2018SoFarSoGreat · 09/02/2021 19:07

7 more days - you've got this @cfulton89! Well done - not an easy feat.

Here's to getting the vaccine and enjoying that lovely month off. I hope you are able to really enjoy time with the baby and DH (even if he is an ass sometimes!)

Wisteria1979 · 18/02/2021 20:17

Thinking of you and hope you get to enjoy some relax time now during your month off. Flowers

Original poster
cfulton89 · 06/03/2021 12:20

Thanks guys. Hasn't really been the most relaxing month off. Had to do a lot of catching up with my open University course, my mum's dog died, my mum went into hospital for a colonoscopy, my stepmum went in for a heart operation, it was my LO's 2nd birthday, and we're attempting potty training which is not going well yet. And back on chemo in two weeks

OP posts:
echt · 06/03/2021 22:06

Gosh, cfulton, it never rains. All the very best. Thanks

dopamax · 25/03/2021 23:01

Hi, I also have brain cancer but shocked that at grade 3 you are having to guess your health as normal WHO prototypical is watch & wait mri with contrast, so this is cruel and neglect. I also have had 2 with the second higher grade tumour seen on a routine scan. Please I beg you to ask for a scan, even with covid they are doing them, have mine next week, so please lots of love from another warrior you deserve it

myhairygoat · 03/04/2021 13:10

How are you OP? I think of you often and hope that your treatment is going well Flowers

Magic1231 · 29/04/2021 10:57

Just read this, you really sound like a lovely person. Why is it always the nicest people with the most to live for that seem to suffer. I truely hope you're doing okay. Sending you healing energy xxx

Original poster
cfulton89 · 29/04/2021 11:36

Sorry for the delay, I'm doing fine, a bit tired. Worse than the first time definitely but getting used to the side effects

OP posts:
Original poster
cfulton89 · 13/05/2021 17:35

My bloods were a bit low on platelets this time so I have to try again next week :( next week is my birthday and we're going away for a couple of days :(

OP posts:
WitchDancer · 13/05/2021 17:48

I hope next week goes well. Thanks

How is the potty training going?

Original poster
cfulton89 · 13/05/2021 18:14

Badly 😂 she is terrified of it one day, wears it as a hat the next

OP posts:
Workinghardeveryday · 13/05/2021 20:09

I know you shouldn’t, but have you tried a little treat every time she does a wee? Like a sweetie and poo’s 2 sweeties?! Worked with all 3 of mine 😁.
Hope you’re okay op xx