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Life-limiting illness

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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:
friskybivalves · 31/01/2019 09:17

Am so glad you managed a bit of sleep. And hope that your neck eases and that DH continues along a slightly easier path xxxx

MustBeDueSomeBetterFeet · 31/01/2019 09:58

Glad things are better this morning.

I just wanted to post as I'm so in awe of how you're handling this, how strong you are.

Wellwhatalovelyday · 31/01/2019 13:35

Delurking to say my thoughts are with you. Hang in there.

JeNeBaguetteRien · 31/01/2019 22:02

Hoping you both have a more restful night tonight and that DH is as comfortable as possible. 💐

littlestrawby · 01/02/2019 08:01

I have just read the whole thread and it is heart wrenching. Thinking of you and your DH and hope he had a restful night last night. Thanks

BettySwollocksandaCrustyRack · 01/02/2019 11:06

Another lurker just wanting to send good wishes. I've been following your journey, you and DH sound awesome. I hope he remains comfortable, thinking of you all Flowers

Iggi999 · 01/02/2019 11:12

Just sending my best wishes for you and your family. So sorry to read this news FlowersFlowers

AndNoneForGretchenWieners · 01/02/2019 15:24

Last night was the worst yet, he's started to get anxious about going to sleep so he was fighting sleep all night, ripping his oxygen mask off, and trying to get out of bed. The only way he would settle was with me holding his hand, but he still refused to give in to sleep, and if I drifted off, he would wake me up. So I'm exhausted, but the doctor came round today and said that operating isn't possible, so the main focus now is managing the symptoms. He's getting weaker and can't cough effectively, so all the build up of fluid in his body is staying there, and the palliative care nurse came today to talk about moving to the hospice when he's a bit stronger. The suggestion of going home for a few days seems to be not feasible now, because he's fading. They gave him valium last night and this morning, and have said he can have it as and when needed, with morphine as the next step to settling his anxiety. I'm worried that will turn him into a zombie, or kill him, though.

The nurses made me a bed up in his room yesterday, and we have our own bathroom and shower ensuite. They are bringing me tea and toast, and generally being fab. Since he's been moved into the private room, I can't fault his care - maybe because the nurses can nip in and sort him out without getting called over by the other patients.

OP posts:
MiceSqueakCatsMeow · 01/02/2019 15:29

I'm sorry this is happening to you both. I've been following your thread. I hope the medication helps your dh become more comfortable. Anxiety is a real arse. It sneaks up on you and you're not really aware of it. 💐💐

TwitterQueen1 · 01/02/2019 16:13

I hope you manage to get more sleep tonight OP, and that your DH finds more peace and rest. It must be so difficult for you both Flowers

Iggi999 · 01/02/2019 17:48

I’m so sorry that things have been worse today. I hope the Valium will bring some rest and at the very least allow you to get some sleep as you need to be able to cope yourself. Flowers

Iggi999 · 01/02/2019 17:50

...I had lots of conversations with my mum when she went onto morphine, if it’s a low dose it won’t/shouldn’t have a zombie effect.

RuthW · 01/02/2019 18:12

Lots of love and thinking of you x

AndNoneForGretchenWieners · 01/02/2019 20:21

Thank you everyone. Some positive news - the oncology team are keen to start radiotherapy as soon as he beats the infection, so he is having daily chest physio and has already brought up loads of gunk. He's tired out now but seems a bit more optimistic.

OP posts:
ajandjjmum · 01/02/2019 20:23

Keeping everything crossed for you Gretchen - hope you both get a restful night.

LadyLapsang · 01/02/2019 21:00

I hope you have a better night tonight.

littlestrawby · 01/02/2019 21:23

Thinking of you both tonight, hoping for a more peaceful time.

TheFuckfaceWhisperer · 01/02/2019 21:27

That’s great news that they feel they can help, maybe it’s the little pick me up he needs to calm his anxiety a little and get him fighting. You’re in my thoughts Flowers

HollowTalk · 01/02/2019 21:29

I'm so sorry for you and for him and the children. It sounds terrifying for you all.

Flowers
FeedMeBooks · 01/02/2019 21:33

Wishing you both a more comfortable night.

fizzandchips · 01/02/2019 21:41

Sending Flowers to you.
Hope you manage some sleep tonight

coffeeagogo · 01/02/2019 21:44

Think of you and your DH - you are so stoic and brave, hope that he turns the corner Flowers

pinkhousesarebest · 01/02/2019 22:07

Holding you all in my thoughts, I hope you get some rest tonight.

Honeywort · 02/02/2019 08:26

Still thinking of you and your dh Flowers Flowers Flowers

Zoflorabore · 02/02/2019 08:46

Have followed your thread for a while op but never knew what to say. After reading your last update I wanted to post that I'm so happy that he is getting some further treatment when he fights the infection. He certainly is a fighter.

You sound absolutely wonderful and I'm another who is saying that although we are strangers on the internet, I'm holding you and your lovely husband in my thoughts xx