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:
lunar1 · 17/12/2021 14:11

I'm so sorry to read your update.

SheldonesqueTheBstard · 17/12/2021 14:12

Wishing you strength to face what is before you.

I’m so sorry Flowers

AnotherOneWithNoGoodName · 17/12/2021 14:21

No advice, but didn't want to read and run.
So sorry OP.

Cazziebo · 17/12/2021 14:28

I am so sorry. Please do look after yourself.

KissedintheDark · 17/12/2021 14:28

Handhold here. Flowers

peachgreen · 17/12/2021 14:32

OP, I'm so, so sorry.

I lost my own DH last year. His death was sudden, but it came after a serious illness and a stay in hospital where things looked very bleak and there were points where we felt we were just waiting for him to die.

This is a strange thing to say, and I only say in the hope that it might help you: as awful, awful, awful as it was losing him, in some ways - in fact maybe in many ways - it was easier than when he was so sick. Because the worst had happened. It was done. I was utterly, utterly heartbroken, but that awful anxiety, the horrific anticipation, the worry and the stress and the panic was over. And now when I meet someone whose spouse is terminally ill and they're saying that they don't know how they'll cope when they pass away, I just want to say... you will cope, because you are coping with this, and in my experience, it's worse. I wouldn't have believed that if someone had told me it when DH was ill, but I'm not the only widow I know who feels this way.

I wish you and your children all the strength in the world, and pray that your DH doesn't suffer unduly. I hope you are able to find some comfort and peace in the time you have together.

I hope this has been even slightly helpful. I'm so sorry if it hasn't. Sending you love.

BackInBlackAgain · 17/12/2021 14:37

I am so sorry to hear this, hand hold and hug for you Flowers

Original poster
PlantPhoenix · 17/12/2021 14:39

@peachgreen you just made me cry. That's it. I'm terrified of what might come in terms of his health before his death. His mobility is already impaired and his memory is getting worse but so far, not his sight or personality changes.

OP posts:
oopsydoopsy · 17/12/2021 14:40

I'm so sorry. I don't often let myself think or admit this, but this will be me at some point in the future. I can't imagine having to cope with it when it happens, I'm so sad for youThanks

peachgreen · 17/12/2021 14:43

I'm so sorry, I can only imagine how frightened you must be. I know it must be impossible but from my experience I would say to try as hard as you possibly can to take each day as it comes and enjoy what you can. You don't want to lookback and feel you wasted the time you had with him worrying about what might happen - especially if none of it does.

Today, he is himself. Enjoy him today. Deal with tomorrow, tomorrow.

I know it's easy for me to say and so, so hard to do. But trying to do it will help, I promise. After DH died, I banned myself from thinking about the future. Every time I found myself doing it, I would deliberately move my brain away to something else. I focused on that day, nothing more. A year on and it comes naturally. I don't think about where I'll be in a year's time. I just focus on finding what joy I can in today. If you can try and do that, it will help your husband, your children, and you.

We are always here.

Dontjudgeme101 · 17/12/2021 14:48

l am really sorry op. 💐💐💐💐

Fredstheteds · 17/12/2021 14:48

So sorry- dad on 2nd round of chemo . It’s tough , cancer that is.

Muchmorethan · 17/12/2021 14:50

My dad had GBM and when l was reading your November posts about his balance, it really resonated with me.

It was also this time of year that we got the diagnosis that he had months left - unfortunately that transpired to only weeks.

Make this the best Christmas you can. Lot's of photo's, favourite foods, presents etc.

I look back on our last Christmas with fond memories and feel so so lucky we managed to get one last "good" one

My love and thought's are with you Flowers

sHREDDIES19 · 17/12/2021 15:07

I am so very sorry. My mum is such a vibrant and independent person but in September it all came crashing down when she was diagnosed with stage 4 brain tumour. She was given 7-9 months and she’s done her radio/chemo round and now on the second but despite the fact on paper she’s doing well tolerating the treatment, I know it’s just a matter of time. It’s been so hard trying to come to terms with seeing someone go downhill and become vulnerable. I wish you all the very best.

LowlandLucky · 17/12/2021 15:17
Flowers
Chachasha · 17/12/2021 15:26

I'm so very sorry Flowers

bumblefeline · 17/12/2021 15:35

So sorry OP Flowers

whatwasIgoingtosay · 17/12/2021 15:40

I hope you can manage to have a reasonable Christmas with DH and the children xx Flowers

MrsWarleggan · 17/12/2021 15:41

Op, I've just been through this with my darling father in law. He had 3 brain tumours. He went just over a year from diagnosis.

It's horrible to watch. FIL had not very nice reaction to the steroids, made him all bloated, he looked like a different man.

I can't say it's all going to be OK, because they are empty useless words. I can't say stay strong because inevitably you are going to have days that are going to be absolute shit.

Sending massive hugs to you and your kids ❤️❤️

mumsiedarlingrevolta · 17/12/2021 15:42

@PlantPhoenix sending love and solidarity.

Following on @peachgreen post-I was widowed young-DH had leukaemia and went through 5 years of battling, relapses, chemo, radiation, 2 bone marrow transplants, hope and hopes dashed.
When he went in to ICU and on a ventilator for the last time it was the first time we felt there was no more hope.

Sometimes there are different ways to win and I had to see that for my DH winning was not having to fight any more.
It was time for him to have a break from the battle-he had fought with all his might but cancer is brutal.

So I did get some peace from that-and the reality is no one knows how long any of us have. All those trite sayings come a bit true.
Live for today
Don't postpone joy.

You sound amazing and I hope you have all the support you need-not always easy to ask for or take it but do let people close share the burden...

Theremoresefulday · 17/12/2021 15:43

Oh I am so sorry

iwantavuvezela · 17/12/2021 15:51

@peachgreen what you wrote is so very true and truly resonated with me- I lost my husband this year - he also died from brain tumours and you put it so well - the stress and panic of the year of his illness , plus covid was something I am not sure now how I actually did it. OP I am so sorry to hear your news - I hear you and understand how hard this is - sending you love and strength for the days ahead

SirensofTitan · 17/12/2021 15:59

So sorry to read this Flowers

Enjoy whatever time you have as well as you can

lightisnotwhite · 17/12/2021 16:00

I’ve had a couple of friends go through this. All I can say is that both of them exceeded expectations in terms of prognosis.
Although it’s heartbreaking to watch loved ones getting frailer neither of them lost themselves until the very end
really. And everyone had lots of time to do things with and show them they were loved.
As PP’s said at the end there’s the peace from the relentless treatments. It is shit, no getting round it.

Really sorry you are all going through this.

RobertsRadio · 17/12/2021 16:04

I'm so sorry Op.