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Original poster

DH has a brain tumour

350 replies

AndNoneForGretchenWieners · 06/01/2019 15:05

I've posted before about my DH, who was diagnosed with stage 4 lung cancer in 2017. He had a lung removed, chemotherapy, and was told the cancer had spread to the lymph nodes but was dormant. His last oncology appointment in November was quite positive and he was cleared to go on holiday in Germany in December.

While we were away I noticed that his memory was quite bad, but he's always been a bit absent minded so didn't think anything of it. He had been having headaches, but was due to have his eyes tested so again thought it was that.

Over New Year he started slurring his words, drooling, and being quite abrupt and snappy. My parents remarked that his personality had changed and wondered if it was his meds.

Yesterday I couldn't understand anything he said, so against his wishes phoned 111, who spoke to him and sent an ambulance. He got very distressed and stopped speaking, so that his speech couldn't be assessed. The paramedics thought he had had a stroke but he wasn't meeting all the FAST markers. When he got to a&e they sent him for a brain scan and the results showed that the cancer has spread into his brain. He has two lesions and a tumour, which is "not small". He was put on steroids and is now going to be an inpatient for the foreseeable future.

I am devastated. I don't know what to expect, he hasn't seen his oncologist yet but she is due to come round today or tomorrow. His speech is even worse today and he is speaking out of one side of his mouth only, and drooling every time he speaks. He's in denial and is convinced he's going home tomorrow, even though I have tried to break it to him that he won't be.

Had anyone been in this position? What do I need to ask the oncologist? Any tips for what could make him more comfortable? What happens next? Please be gentle.

OP posts:
Original poster
AndNoneForGretchenWieners · 02/02/2019 10:51

I'm really overwhelmed by your kind words and thoughts.

DH had the worst night yet, he became physically aggressive with me and the nurses, and after pulling my hair and trying to bite, punch and kick me, he was heavily sedated for everyone's safety including his own. He ripped out his NG tube and oxygen, tried to rip out his catheter and kept trying to pull his drip out. His face was distorted like I've never seen it, and he's never been violent at all - in fact he's very passionate about the issue of domestic violence, as I was a victim in a previous relationship. If he knew what he was doing, he would be horrified, but it's just his illness and the tumour confusing and scaring him. It scares me too, though.

He's zonked out now, and the palliative care consultant has prescribed a cocktail of sedatives to keep him relaxed so he can heal from his infection. I hope he is peaceful and doesn't know what is happening, because it must be such a dark and scary place to be in. He is being assessed for transfer to the hospice on Monday, as they don't accept transfers at the weekend.

OP posts:
Kittykat93 · 02/02/2019 11:08

Sounds like you've had an awful night. I remember my mum crying and asking why I wasn't trying to get us out of the fire (obviously there wasn't one) but she was so distressed and it was absoloutely horrible. It was a mixture of the extremely strong painkillers and tumours pressing on the brain.

The sedatives do a wonderful job, and he will be peaceful op. Just like he's in a lovely sleep. Make sure you're getting enough rest too Thanks

TwitterQueen1 · 02/02/2019 11:19

That must have been so distressing OP. My step-grandfather got violent with dementia but he was the most loving, peaceful person IRL. My mother did too after lots of TIUs. Illness does some very weird things to the mind but as you say, it's just not a true reflection of the person. I hope you can get some rest whilst he is calm.

BaaBaaBaaMoo · 02/02/2019 11:56

My DDad the kindest nicest man who would not hurt a fly was aggressive with the nurses after he broke his pelvis he was in so much pain and terrified and confused.
Do not take it personally. He's not himself at the moment.

LadyLapsang · 02/02/2019 12:02

Gretchen, so sorry to hear your latest update. It is really distressing when someone you love is like this. I hope you will let someone sit with with him today so you can get a meal, fresh air and sleep. Hugs and Flowers and hoping the medics find the right cocktail of medication to keep him comfortable.

LadyLapsang · 02/02/2019 22:31

Thinking of you. How are things today?

MaryPoppinsPenguins · 02/02/2019 22:44

Flowers thinking of you x

Original poster
AndNoneForGretchenWieners · 02/02/2019 23:50

Today has been completely different, he's been so sedated that he's barely said more than a sentence an hour. No panic attacks, but not much interaction and lots of sleep. Tonight the sedatives have worn off a little and he's been a bit chatty and more chilled, mainly because of the valium I think, but whether he sleeps tonight remains to be seen. We had a chat about whether he would be happy for me to go home for a couple of hours tomorrow if my mum and dad sat with him (want to take DS for lunch and DH is super close to my parents) but he isn't sure that he would feel happy if I wasn't there in the room as well, so we agreed to decide in the morning how he feels. He even tried a little joke tonight - I had put the telly on quietly for some background noise, and when he had had enough he said that falling in love was a pain in the arse, because two people always wanted different things because he could see I was still watching it. I have put on headphones and he is trying to nod off. Fingers crossed for a better night!

OP posts:
LadyLapsang · 03/02/2019 00:06

Well, he made me smile - falling in love can be a pain in the arse, but the alternative is pretty bleak. What you are doing now is love in action and I know I am one of many here who is holding your family in our thoughts. I hope you have a peaceful night and both get some sleep. Good night.

TheFuckfaceWhisperer · 03/02/2019 00:19

It’s good he’s had a better day. Hopefully he has another one tomorrow and you get to spend some time with your DS and away from the hospital for a few hours. It must be so hard but you need to look after you too

BriocheBriocheBrioche · 03/02/2019 00:23

You are so strong. 💐💐

FrenchSchnoodle · 03/02/2019 00:38

So pleased he had a slightly better day. Thinking of you both and hoping he's resting and more relaxed. Hope you manage to get some rest too. x

Choccywoccyhooha · 03/02/2019 01:14

I've only just come across your thread Gretchen, I'm so sorry that you and your dh are going through this. Thinking of you, I hope you both get some sleep.

Turquoisetamborine · 03/02/2019 02:14

I’m so so sorry OP. I can’t imagine what you’re going through.

LegalEaglesNeeded · 03/02/2019 03:30

This thread is so sad, my heart goes out to you, your DH and your family. Flowers I hope the knowledge that a stranger living many miles away is thinking of you all and wishing you well gives a tiny bit of comfort. x

Izzy24 · 03/02/2019 08:14

@Gretchen,

You, your DH and your family in my thoughts also since I first read your post.

I hope your day will be as peaceful as it can be and also that the hospice will be able to care for you all very soon.

AppleDump · 03/02/2019 10:25

Thinking of you all, you are so brave 💕

TheGonnagle · 03/02/2019 20:19

I hope you both manage to get some sleep tonight x x

Honeywort · 03/02/2019 21:28

Thinking of you again tonight Flowers

littlemissalwaystired · 03/02/2019 21:50

Thinking of you both tonight, I hope it's peaceful and you both get some restThanks

chickenfeathers · 03/02/2019 21:50

Sending you both love and strength Flowers

coldcoldcoldcold · 03/02/2019 21:59

Wishing you both a peaceful evening. I hope you both get some rest

bexcee · 03/02/2019 22:16

Good luck with the assessment to be transferred tomorrow. I think you'll both be more comfortable in the hospice.

StandUpForYourRights · 04/02/2019 17:36

I've been lurking a while but just wanted to add my hugs and wishes for you both. I hope last night was more peaceful and you got the hospice transfer FlowersFlowers

Redland12 · 04/02/2019 17:59

Thinking of you today 🌹🌹