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

[PlantPhoenix]

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.

So sorry OP. Its absolutely awful the situation you're In. Take it moment to moment. It's okay to go to work, I totally get why you would.

I get it too. My DH had brain cancer. Much love.

Just wanted to send love and know that people are thinking of you

I understand. My husband has cancer and we know his life expectancy is short, I get the fear and I get the work thing too, it is the thing that grounds me and gives me a degree of escape. Much love to you OP.

I’m so sorry. Sending a handhold and sitting here with you.

Oh, it's shit, isn't it? But I thank you all for saying something. I obviously scared some real life friends earlier on a whatsapp group. And I know there's nothing they can say to make it better but they can distract me with chatter

For me it was my dear father I was caring for, but I sometimes used to curl up to go to sleep with my arm over my eyes, literally hiding myself from what was happening. I needed to “escape” like that to give me the energy to be strong the rest of the time and to support him .

for you and your lovely husband x

It must be terrifying for you. You're having to be so brave. How old are your children?

Early teens / tweens. The youngest doesn't remember a time without it. She saw him wobble the other day and tried to prop him up 😟. They're my saving grace at the moment.

Your husband must have noticed the difference in himself. Did he manage to go to sleep tonight?

Thay sounds incredibly tough. Im so sorry.

Sending a hand hold

It's so so hard watching them go through this. There's a thread in life limiting of people whose partners are on the treadmill called 'still the storm' feel free to join us over there

I’ve been exactly where you are now. In my case it was his words that went first…. His sentences were jumbled and made no sense. That was the moment for me where it became real, and like you we had lived with his brain tumour for some time by the. Thinking of you.

@notapizzaeater I'll look you all up.

Thank you all. Today has been a bit better. Whether it's the vagaries of brain tumours, the steroids taking effect or the fact he's rested more today I'm not sure. I've been to a friend's today for a break. But I really appreciate the handholds last night.

I know I'm just an internet random but you have been in my thoughts today, so I am glad to hear that today was a bit better and that you're feeling supported.

Hugs to you OP

My husband died from a brain tumour 6 months ago.

Yay for steroids, I remember their magic effect.

I also remember the crushing weight of all the stress.
Keeping on top of all the day-to-day houselhold running
Keeping on top of all the medical appointments and researching treatmnets.
Dealing with the worse and worse news.
Dealing with the barbaric aftermath of brain surgeries.
Keeping up my husbands spirits as completely shit time for him.
Not having his support any more.
Driving 100 miles round trip every day for radiotherapy.
Dealing with the seizures, the falls, the balance issues.
Dealing with the lack of memory and lack of speech.
Not having any time to myself.
Not sleeping.

And you've got kids as well.

So in summary you're doing great and its a normal reaction to be scared shitless. Get some antidepressants if you haven't already.

It's a horrible illness. My husband was diagnosed with a low grade tumour in 1999 and we went through so many ups and downs over the next 12 years.
It is also very different to other cancers as the personality changes and they lose function in some areas. Get memory problems too.

When my husband was admitted to Marie curie I was off work but went in to do admin as I could cope with that. I'm a GP so just couldn't face patients but was glad of my colleagues for support.

Wishing you strength through this horrible time.

What a week, his steroids have been increased from 1mg to 4,then 8 and now 16mg. He's still wobbling all over the place. We took the kids to the remembrance day parade so they could take part with guides this morning. The veterans all thought he was one of them because he's relatively young yet walked with a stick. At one point, a guy in his 70s had to help me balance him as he got up from a bench. I spent the entire ceremony in tears.

I’m sorry that you are having to deal with this. To echo what others have said, it sounds like you’re doing very well in the circumstances. There’s nothing wrong with needing to have a break (and work can be just that).

Crikey OP, that sounds like a really hard time. I find that whenever anyone we are caring for or love has a step change in how well they are it takes time to recalibrate and learn how on earth to manage. And special times and ceremonial or ritualistic things we do like remembrance day or celebrations can be hardest of all. I don't know anything to say to make it better but I hope writing here and hearing from others can help in what must be a really difficult time

I’m so sorry OP. Rant and moan as much as you like, it is such a shit situation.
It sounds like your children are coping brilliantly and will be a very important support for you. You do need grownup support too, am pleased you have someone you can speak to on Tuesday

And there we have it. We've reached the stage where we're talking months, rather than years. I'm heart broken

Oh my goodness so v sorry to hear that. Sending lots of love and prayers . Life is v unfair at times . Look after each other xxx

So sorry to hear that.