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Original poster

My husband has a brain tumour

55 replies

funkystars123 · 10/04/2022 03:58

My husband had a seizure today... went to a and e and he's been diagnosed with a brain tumour....

We have 3 kids, 23, 15 and 13... they youngest are autistic and are already struggling post pandemic.

I have had to leave him to come home so I can sleep and talk to the kids tomorrow.

I love him so much and am so so scared

OP posts:
WaveParticleDuality · 10/04/2022 04:04

That's scary, it must be absolutely terrifying.

There are many, many types of benign brain tumour that can be managed or treated. So don't panic.

Big hand hold though. I completely understand about autistic teens and life at the mo'!

EthelsAuntie · 10/04/2022 04:14

What a shock for you both. Hopefully, they will run more tests and come up with a plan. As a previous poster mentioned, it might be benign even. Go get some sleep. You don't need to give all the facts to your kids yet. You could wait until you know more and just say they are running tests at the moment but he is very unwell. That isn't lying to them.
Tomorrow is a new day and I'm sure by the end of it you will be armed with more information. It isn't going to be easy at all but try to remain positive. You just have to put your faith in the doctors and have hope. Now, go sleep. Everything looks bleaker when you are exhausted too. Be kind to yourself.

Forgottenmypasswordagain · 10/04/2022 04:20

I'm so sorry. Hopefully he will recover with treatment and be home soon.

Original poster
funkystars123 · 10/04/2022 04:42

Thank you.., I am home and going to sleep now

Luckily my best friend is here to be with the kids and so we have had tea and now sleep

Tomorrow is a new day and we will be positive..

OP posts:
LoveSpringDaffs · 10/04/2022 04:54

(((hug)))

I'm so sorry, that will have been such a shock and so scary.

I hope you are asleep now. I'm glad your friend is there.

Let's hope the tumour is benign and can be removed xx

Wordwatcher · 10/04/2022 05:52

Hugs and hand hold for you. It must be such a terrible shock. Hopefully, it will be operable and benign.

I also hope you get some support be it your best friend again or others.

Thinking of you and wishing you the best.

Lifesonebigparty · 10/04/2022 06:06

Sending you so much love and positivity right now. Flowers

Joystir59 · 10/04/2022 06:48

I hope you get positive news about treatment today..such a horrible shock..

Maggie178 · 10/04/2022 06:50

It's a massive shock and very scary getting a life threatening diagnosis. So many things run through your head. My husband got diagnosed with end stage kidney failure. I've replayed the moment the consultant both told us over and over again in my head. Things that I found helped - support from family and friends, taking it one day at a time (there will be good days and bad days) and practising self care too. Your instinct will be to look after your husband and kids but don't forget you need to make time for you too. Hopefully it will be treatable. Stay positive.

HELLITHURT · 10/04/2022 06:52

Sending you love, hope and if you want to come back, you will be offered support as much and for as long as you want.

I'm hoping that today brings more positive news, that there is a way out of this.

Take care as much as you can Thanks

PlantPhoenix · 10/04/2022 07:06

Oh, I'm sending you massive hugs. It's a horrible shock. My DH was diagnosed with a brain tumour in 2014. It's a LOT to take in, and a whole new world.

I'm happy to talk if you need. Flowers

unidentia · 10/04/2022 07:33

((Hugs to you)) what an awful day for you. Its great you have a friend there to help you process the shock. Its good they have scanned him and are keeping him in.

My husband had a seizure 2 years ago this week, and eventually (no scans during Covid!) was diagnosed with a brain tumour.

This charity is good - read some of the website and get the information pack.
www.thebraintumourcharity.org/
Doctors rattle on about parts of brain etc, tumour types, show you MRI scans etc, and it helps to have a basic knowledge.

Here's hoping his tumour is benign. They can likely tell that from the MRI. Brain-tumour-land is not filled with happy endings, but things can be staved off with operations/chemo/radiotherapy.

Happy to answer any questions here or on private message.

Lulu1919 · 10/04/2022 07:36

You've had a shock
Try to breathe
Many many people live with a brain tumour
Hand hold - get as much info as you can over the next few weeks ....once you know more and a plan is in place you'll feel stronger

WorryMcGee · 10/04/2022 08:15

I am so sorry OP. I went through the same thing in august 2020, my husband had a seizure at home (no other symptoms) and A&E said they could see a “shadow” on his CT scan that was more than likely a brain tumour. Our whole world fell apart and we both assumed he was going to die, because you hear “brain tumour” and that’s where your mind goes.

He did not die. The tumour was successfully surgically removed and it has not grown back. He takes anti-seizure meds as there is some scarring on the brain but they have no side effects, and neither does the scarring - which was reduced on his last scan so it’s possible he will be able to stop taking the meds one day. Apart from (understandable) worrying when he gets a headache, he is back to normal. His hair grew back too so you can’t even see his craniotomy scar Smile (which was pretty big!)

You haven’t mentioned if an MRI has been done yet - I’m assuming perhaps not as they can take some time to arrange. The MRI is where you will get your answers, CT is not detailed enough. We got a private MRI in the end as we were being given ridiculous waiting times “because of Covid” - we still ended up seeing the same consultant that we would have done anyway, he just got the images he needed much quicker than he would have done had we waited on the NHS. Hopefully the situation now is not what it was on a bank holiday weekend in the middle of 2020 but it’s something to consider if you need to/can.

Take things one hour at a time and try not to go into a thought spiral until you’ve got more information as to what you’re dealing with. Easier said than done, I know. I will keep you all in my thoughts Flowers

Belledan1 · 10/04/2022 08:20

You are all in my thoughts.

Pottedpalm · 10/04/2022 08:33

Sending good wishes; my sister was diagnosed with a brain tumour in October. It was pressing on her optic nerve and affecting her sight. She had to wait four months for surgery but it went well and she is recovering. It was benign. There is hope. 🌺

CounsellorTroi · 10/04/2022 08:58

I’m so sorry OP. This must be so frightening. But as pps have said there is hope. Thinking of all of you.

Lowkeyloopy · 10/04/2022 10:21

Handhold for you OP. Horrible to hear but try not to go to the worst place in your head. A friend of mine was diagnosed with the worst type of rare cancerous brain tumour at 25 years old and given 6 months - 2 years. 15 years later she is happy and well and enjoying life with her husband and child.

So although “brain tumour” sounds like a very scary sounding diagnosis, even if it’s benign, it’s amazing what the doctors can do. Take it one day at a time. You sound very strong and you’ll get through this!

Original poster
funkystars123 · 10/04/2022 20:06

Thank you everyone, just home from seeing him.. he's settled on a ward and has an MRI tomorrow... we will know a lot more then.

Our friends have been amazing and kids are ok.

He's most upset about not being able ti drive.. that's so important for him.....

And our eldest and his parents are away... feels so hard not telling them but they will come back soon enough.,

One day at a time....

OP posts:
Boiledbeetle · 10/04/2022 20:17

OK firstly he is in the best possible place at the moment. You know he's safe and will be looked after if he has another seizure.

As difficult as it is please try not to Google.

I'm currently sat here with a brain tumour, I've had it for years. It's benign and was found when I had a suspected stroke.

I appreciate it's easier to say than to do, but please try not to ruminate too much until you know exactly what you're dealing with.

Wishing you and your husband an uneventful night.

MissyB1 · 10/04/2022 20:36

Fingers crossed for you that the MRI gives favourable news, a tumour that can be dealt with. 🤞
My dh was diagnosed nearly 6 years ago. His tumour is in a very tricky place, and grows very slowly so he’s not had it removed. A few weeks ago he needed a shunt (drain) inserted to drain some fluid, but he still works full time and just gets on with life.
It’s not always the worst scenario.

cherish123 · 10/04/2022 21:04

Sorry to hear that. Try not to worry. There are lots of treatment options. Radiotherapy often used to reduce the tumor. Hope he's okay.

LBF2020 · 10/04/2022 22:04

Sending hugs
I also have a functioning, but benign brain tumour. I take a tablet once a week and as it's growing very slowly, it's unlikely it will ever need to be removed. I know the words 'brain tumour' are TERRIFYING but I am hopeful for the best outcome for you tomorrowThanks

headspin10 · 10/04/2022 22:16

Really sorry to hear this. Must be a very scary time. I know someone who had a brain tumour around 13/14 years ago and you'd never know it now. She runs a successful business and is a mother to 3 children. I really hope you get good news after the scan.

Obviously this is not anywhere near the same thing, but a couple of years ago my partner had DVT and it was very scary. It kind of reshufffled things though and we realised what really mattered in our life and I really felt so so deeply how much I love him. (After being generally a bit moany Grin) So there were some positives.

Original poster
funkystars123 · 11/04/2022 07:30

Thanks everyone, it helps to hear the positive stories!!

OP posts: