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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:
IrenetheQuaint · 12/01/2019 22:07

So sorry to hear about your DH. Like others I have found the QE in Birmingham to be excellent (even the food!).

Hope you have a good treatment plan in place soon.

Hezz · 12/01/2019 22:10

No advice to offer except to remember to eat, but lots of love to you Thanks

JeNeBaguetteRien · 14/01/2019 01:25

Sorry to hear he is back in hospital. I hope he feels more comfortable as the antibiotics start to work. Thinking of you 💐

Lifeofsmiley · 14/01/2019 21:12

andnone, Flowers , I have been in the same situation and unfortunately it wasn’t a good outcome for my dh.
Feel free pm me if you have any questions.
How old is your ds?

Original poster
AndNoneForGretchenWieners · 14/01/2019 22:27

Thanks lifeofsmiley Flowers for you too.

DS is 18.

The oncologist has been today and is sending him to see a neurosurgeon, but she's not convinced that surgery is the best option and so will have another case conference after the surgeon has seen him. They have refined his antibiotics (he's now on 4 different kinds, 3 intravenously and 1 orally) because he has pneumonia which is in his bloodstream as well as his lung. He is feeling a bit better now but will be in hospital for the foreseeable future. They consider him a failed discharge from last week's admission and he's now on the oncology ward.

I've been to see Macmillan today to start the ball rolling about a will and power of attorney, they have been ace. Sitting with him is quite draining in many respects because he is asleep quite a bit, and I'm not sleeping at all (have had uni tutorials and it's hard going!), and I'm there as much as possible. The ward is so friendly though and I've been chatting to the other patients and their visitors.

Being able to talk about this here is really helping, thank you everyone for treading and taking the time to send your well wishes, they are much appreciated.

OP posts:
UAEMum · 15/01/2019 15:08

I have been thinking about you and sending good wishes. What are you studying?

BaaBaaBaaMoo · 15/01/2019 16:59

Can you defer your studies for a while?

Original poster
AndNoneForGretchenWieners · 15/01/2019 20:52

I'm doing an MBA, and only just started it, because things were starting to look more stable. DH has told me he really wants me to carry on as long as I can because he wants to see me graduate. Luckily I'm not behind, because the first module is what I do for a day job, so it was more of a refresher for me than new stuff.

OP posts:
JeNeBaguetteRien · 15/01/2019 23:58

I hope your DH is comfortable.
The not sleeping for you is hard, hope you manage some rest soon. I think you're on such high alert mode it's hard to wind down.

How's DS doing? Is there any support available for him? 💐

halfwitpicker · 16/01/2019 00:06

Thinking of you, gretchen Flowers You sound incredibly strong.

An MBA eh, I've penciled myself in to try and pass the GMAT - not sure how I'll fare Confused been a while since I did any maths!

Original poster
AndNoneForGretchenWieners · 16/01/2019 12:49

I'm sure you will be fine - I was useless at maths at school, but working with figures and completing financial assessments for my day job made it all click into place, I think because it's applied rather than abstract. I'm lucky that work are funding it as part of their new apprenticeship initiative, and there's a few of us in the organisation who can support each other. Having not studied for a while though, it's a bit of a culture shock!

DH is feeling a lot better now, apparently the blood infection is called bacteremia and it can shut down your organs very quickly if left untreated. The doctor has said he was lucky we caught it early enough to treat it before any significant damage was done - I think we have a guardian angel or something! His memory is deteriorating more and he has asked me to make him a little photo album of our memories with our names on, so he can look at it if he is having a bad day with remembering who everyone is. At least it will give DS something practical to do.

DS is very stoic and bottles things up. He has been offered a referral to the hospice for counselling, and my work have an employee assistance package for staff and their families so that they can access support - he has rejected the idea of counselling completely and says he is fine. He isn't fine but i can't force him to talk Sad His girlfriend has a parent with a long term health issue who is frequently in hospital, so he has someone outside his family to talk to.

OP posts:
Lifeofsmiley · 16/01/2019 19:45

I’m glad your dh is feeling a bit better op, thank goodness it was caught early.
The photo album is a lovely idea.
Your ds sounds similar to mine. Bottles things up and doesn’t really speak much about his df.

UAEMum · 18/01/2019 18:09

How are things op? I hope all is as well as it can be x

UAEMum · 18/01/2019 18:09

How are things op? I hope all is as well as it can be x

thewinehasgonetomyhead · 18/01/2019 18:33

Thinking of you all OP.

Original poster
AndNoneForGretchenWieners · 18/01/2019 22:53

Today hasn't been a good day. DH is so confused that he can't figure out how to work the tv remote, and I've had to take over his meds because he had been getting muddled up. I spoke to his Macmillan nurse and his oncologist today, they both think the confusion is because his steroids have been reduced on discharge. So instead of 16mg per day, they reduced it to 12 with the aim of getting down to 8 by Sunday. I've been told to increase it to 14 today and tomorrow, and if he's still not himself, go back up to 16, because he was relatively normal on 16.

It's so horrible watching him get things wrong, like not being able to choose a telly programme because he doesn't know what button to press, but he really wants to be independent. So he is determined to make cups of tea, or feed the rabbit, but he forgets what to do, and doesn't boil the kettle, or leaves the hutch door open. I really hope the steroids will start to improve things again. The oncologist said she wants him on the lowest dose possible for him to function, because of weight gain and weakness in his limbs. But his brain is more important. Sad

OP posts:
Willowkins · 19/01/2019 01:08

Hi Gretchen I'm usually up late and came across your last post Brew. Steroids are tricky - I would have thought weight gain was the least of your DH's problems but they can push up blood sugar levels so that is something to be aware of. My DH is now insulin dependent very possibly because of this. I also look after the meds. I found getting one of those weekly (days of the week) tablet caddies helps.

Izzy24 · 19/01/2019 16:51

Hi @Gretchen,

Another person signing in to say you are all in my thoughts.

I hope putting the steroid dose up again will be helpful. What a hard path you are all on.

I happen to be visiting Birmingham today and the weather is dismal which is never helpful- although of course that is the last thing on your mind at the moment.

Love to you all.

Original poster
AndNoneForGretchenWieners · 19/01/2019 20:57

Thanks willow and izzy

Today has been particularly bad for confusion - he had a massive panic attack this morning where he didn't know where he was, I doled out his meds and he knocked his tea over. He gets very upset and said he's not doing it on purpose, which of course we know he isn't but he hates being so incapable. He thinks it's 2024, no matter how many times we say it's 2019, and isn't really eating.

His confusion is slightly less this evening, and he seems a bit more alert, whichis positive. I just feel so bloody useless.

OP posts:
TheGonnagle · 19/01/2019 21:12

I’m sorry you’ve had such a crappy last couple of days. I hope the steroid increase starts to kick in soon, I take long term steroids and I tend to notice a change about three days after a dose increase.
Have they moved him over to the QE now?

Original poster
AndNoneForGretchenWieners · 19/01/2019 21:29

No, he's at home until he sees the neurosurgeon, whose on holiday until the 31st, DH has the first appointment on his first day back. His oncologist tried to get an earlier appointment but she really wants him to see this particular consultant (head of department or something) rather than one of his team. The team at QE will be meeting with the neurosurgeon on that day after his clinic finishes, and will phone us either that day or the day after.

OP posts:
TheGonnagle · 19/01/2019 21:56

That’s a long and stressful wait for you all 😞
I hope you have a good night and a decent sleep ready for whatever tomorrow will bring. Sending you calm thoughts x

Kittykat93 · 19/01/2019 22:35

ThanksThanks sending best wishes to you all

Shadow1986 · 19/01/2019 22:39

So sorry.

My mum has a brain tumour - but they all vary so much. I hope the doctors will be able to give you some information soon. Sending love. By the way if you are on Facebook there are some great support groups where people will more likely know answers to your questions, than on here.

Nicolamarlow1 · 19/01/2019 22:44

Another one sending love and hugs. Look after yourself as much as you can. Flowers