Active discussions

Please or to access all these features

Talk
Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

DH has had brain tumour for years and today, for the first time, I'm genuinely scared.

139 replies

PlantPhoenix · 06/11/2021 21:23

We've coped with surgery, coped with life getting back to normal, coped with regrowth, radio /chemo and resultant fatigue, coped with shielding. And now he has new tumours, has started chemo but his mobility is increasingly impaired by a lack of balance. And tonight, having watched him wobble about all weekend, and I think probably getting worse, I've realised that I'm scared. So scared.

OP posts:
HereticFanjo · 06/11/2021 21:26

Just sending a handhold OP Flowers

Original poster
PlantPhoenix · 06/11/2021 21:33

Thanks. I don't even know what I want out of this post. But I don't think I can tell him right now. And I can't tell the kids.

OP posts:
Cheeseandlobster · 06/11/2021 21:35

I am so sorry op. I have no answers or advice but this is a great forum for this. I wish you and dh all the best

PostmanSplat · 06/11/2021 21:36

That sounds really tough. Do you have real life support?

Original poster
PlantPhoenix · 06/11/2021 21:40

Yes, I do. But it's saturday night, everybody's in bed and I can't face speaking to real life people (if you know what I mean)

OP posts:
TeenTraumaTrials · 06/11/2021 21:47

PlantPhoenix I can't imagine what you've been through and are still going through. I'm sure scared is a totally normal feeling. Do you have a Macmillan nurse you can call? But we're here and can listen and you can be totally honest because we don't know you and can't judge you so you can say whatever you are feeling and get it all out. HH and Flowers

HereticFanjo · 06/11/2021 21:51

What would help you tonight OP? Something you can do tonight?

Ketchupgoesinthefridge · 06/11/2021 21:55

OP I'm so sorry that you're both going through this. I look after patients with cancer and have some professional experience with what you're saying. Do you feel maybe tomorrow you could talk to someone in your life, a friend or relative you trust to share this with. Have you a specialist link nurse within the hospital he attends that you could chat with about this
Again I really am so sorry that this happening but I gently encourage you to reach out to people and lean on the support available.

Snally82 · 06/11/2021 21:56

Sending much love OP - my area of work is in this field and it’s a cruel illness. There are carers groups on Facebook if you need peer to peer support

ftw163532 · 06/11/2021 21:56

I'm so sorry. Flowers Just sitting with you. If I could carry some of that fear for you I gladly would.

Original poster
PlantPhoenix · 06/11/2021 21:57

Not having another glass of wine will help so I've put it away (haven't had much really).

This is the first time that his /our life has been impacted so visually. Does that make sense? The first time, he had seizures but at work so I didn't see them. Round two was just picked up through routine monitoring, and whilst the radio /chemo/ resultant fatigue were really unpleasant it kind of became normal. This time, he's wobbling all over the place. It's hard for him, and is the first time he's found it so hard emotionally. And it's so in your face. Somebody asked if I should be at work and I had to confess that it was much better for me to be at work because I got a break from seeing it..

OP posts:
Somebodylikeyew · 06/11/2021 21:58

Just sending you a virtual hand hold.
Keep talking here, if it helps x

Original poster
PlantPhoenix · 06/11/2021 22:00

His nominated specialist nurse is back at work on Tuesday. I can talk to the team but she's such a fab person that I'll probably wait for her.

And i have people I can call or see tomorrow.

OP posts:
Original poster
PlantPhoenix · 06/11/2021 22:02

@Snally82 I know of the carers groups and sometimes access them but I'm staying away tonight. I can't read stories of it being worse.

OP posts:
SpookyPumpkinPants · 06/11/2021 22:03

I'm sorry to hear about your DH & I'm very sorry to hear it's really hitting you tonight.

((((HUG)))). I'm good for squishy hugs xx

However, I think you need someone IRL for real hugs & with whom you can be totally open & honest about your fears, thoughts & needs. Have a good think about who that might be ...it's not always who you'd expect!

In the meantime, we're all here xx

mommybear1 · 06/11/2021 22:05

Handhold OP ❤️

Piffpaffpoff · 06/11/2021 22:15

OP I’m sorry to hear it’s getting harder. Sending a hug.

When you wrote “ Somebody asked if I should be at work and I had to confess that it was much better for me to be at work because I got a break from seeing it.” I felt for you and wanted to say I have a friend in a similar situation and they said something very similar to me - that work was a distraction from what was going on at home. Don’t ever feel bad for thinking that, it’s perfectly natural and valid.

I totally get that you don’t want to speak to real life people - I am the same, face to face is just too much to deal with sometimes. Keep chatting here if it helps.

Ketchupgoesinthefridge · 06/11/2021 22:18

@PlantPhoenix

His nominated specialist nurse is back at work on Tuesday. I can talk to the team but she's such a fab person that I'll probably wait for her.

And i have people I can call or see tomorrow.

I hear what you're saying about how visual it has become for you. It must be so hard to see him distraught by it too. It sounds like you're both struggling with the burden of this disease and the difficulty of undergoing more treatment. This is alot to process and at the weekend it can all feel a bit isolating and like you both have to cope with it. We are here to provide some support and sit with you a while
Somebodylikeyew · 06/11/2021 22:18

TOTALLY get the work thing and you mist not feel guilty about it- we’re not meant to live on such a horrible heightened emotional plane the whole time, it’s not good for you. A bit of normality is what will mostly likely help you get through this, so do not feel bad for that x

TableFlowerss · 06/11/2021 22:20

Sorry to hear about your DH. Xx

Handoverthechocollate · 06/11/2021 22:22

Sending a hug 🤗 and a handhold. So sad for you, OP. Flowers

Original poster
PlantPhoenix · 06/11/2021 22:29

I'm sad for me too. This is probably the first time I've had a proper sit by myself and spent time thinking about it since we started in the rollercoaster again 3 weeks ago, between the initial numbness, half term, starting chemo etc so this will be good for me too. But I don't like it! (and now I sound like him)

OP posts:
godmum56 · 06/11/2021 22:32

sending another handhold. have been where you are only it was bowel cancer. Its bloody horrible

agent765 · 06/11/2021 22:32

So sorry you're going through this.

GenderAtheist · 06/11/2021 22:32

I agree with everyone else about your staying at work. We all cope in different ways - you do whatever you need to get through this.

It’s normal to cope for ages and then one more thing happens and you think “ fuck this , I’ve had enough, I’m out of here, I can’t do this anymore”.

And then have no where to go ☹️☹️☹️

The balance thing is shit because he’s suddenly like an old person falling over and it’s so disabling . Stops him doing ordinary things like having a shower safely or making a cup of tea.

All these small things matter so much to our independence and sense of self.

I guess you have both given up on his doing a marathon this year. But it’s really not too much to expect that he could walk up the stairs without falling 😡. Cancer is a bastard.