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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:
Scarydinosaurs · 07/01/2019 23:29

I don’t have any advice, but just wanted to say I am so sorry you’re going through this.

xlexiix · 07/01/2019 23:31

Having gone through similar with my DF a few years ago.

Usophogeal cancer that had spread to his brain if the cancer turns out to be incurable may I suggest you fight to stay on the steroids permanently, they weaned my DF of them and the change back to ill was almost as fast as the change from ill to almost well again .

I think the logic was that steriods can cause damage to organs etc but honestly I think we were in that much shock we didn't question which would happen sooner as such his last week's were very miserable for everyone as the moods swings etc were back with avengence.

Good luck for tomorrow the staff at the QE were amazing with my DF they used to let us take in any food he wanted whenever he wanted it (steriods definitely gave him an appetite!) We used to take Chinese noodles to visiting!

CheeeseLady · 07/01/2019 23:35

Thankshugs xxx

JeNeBaguetteRien · 08/01/2019 00:30

Just sending hugs AndNone.

If your DH doesn't want to see results then maybe look at this (not discussing results) as something you can do for him. Your love really shines through in your posts.

On a practical note cardigans or zipped tops could be good (you mentioned buying him comfortable clothes) as may be easier to get on or off than jumpers.

💐

UAEMum · 08/01/2019 18:50

How are things today? Did the Dr come?
I hope the news was as good as it could be.

AndNoneForGretchenWieners · 08/01/2019 21:41

He's had the scans now and the steroids have started to kick in, so the headaches aren't quite as bad, although still as frequent. Because they don't have any more tests to do now they have allowed him home for a couple of nights, on the proviso that if anything changes I take him straight back.

The suggestion of zipped jumpers and cardigans is great, I hadn't thought about that but it will be much easier for him.

We won't know any more now until Thursday when the team discuss his case at the QE. His oncologist still hasn't phoned me back but I have spoken to the staff nurse and have an appointment with his Macmillan nurse tomorrow.

He's been told he may start to have seizures, and he can't drive any more. That has really upset him because he feels that he has no independence any more, and it's all starting to seem so final.

I've told work I can't carry on at the moment and need to take some time off. I need to be with him and make him comfortable. He can't be left alone at all, so I'm trying to keep him entertained whilst subtly keeping an eye on him!

OP posts:
UAEMum · 09/01/2019 01:48

This is so sad. I hope that you have a good few days together at home before you get the results.

Izzy24 · 10/01/2019 10:23

Thinking of you today.

AndNoneForGretchenWieners · 10/01/2019 11:48

Thanks. DH had a bad night because our house alarm back up battery is dying and keeps beeping, I can't hear it but he can and it kept him awake until 4am. When he work up this morning he thought he needed to go back in to hospital - weird pain in his head and couldn't breathe - but it passed as soon as it had come on.

His discharge note from the hospital describes the lesions as large (one is 3.5cm and the other 4.5cm) and occupying most of the frontal lobe on the right hand side, pressing against the motor function. The smaller one has significant mass to it. His sight is worse but the steroids seem to be kicking in because his speech has improved noticeably now.

Fingers crossed that we will hear from the oncology team today or tomorrow.

OP posts:
Izzy24 · 10/01/2019 13:25

I’m glad his speech has improved.

Those battery alarms are so irritating- once you’ve heard them it’s impossible to ignore the sound.

Whatever news you get from the MDT, I’m sure it will be a positive to know :

Where things are now,
Options for treatment,
Immediate, interim and longer term needs and planning.

You will have some kind of shape to your situation whereas I imagine that at the moment it is nebulous, huge and overwhelming.

To repeat myself, the QE is an outstanding hospital and I’m not sure you could be in a better place.

Thinking of you all.

UAEMum · 11/01/2019 19:29

Was thinking about you today. Hope you are both doing well

53rdand3rd · 11/01/2019 20:23

I have pm'd you, OP Thanks

Cherrysherbet · 11/01/2019 21:40

I’m so sorry this is happening. Thinking of you, and sending positive vibes to you both.

Pommes · 11/01/2019 21:47

Thinking of you, OP. 💐

AndNoneForGretchenWieners · 11/01/2019 23:45

Thanks everyone. His confusion and memory loss has started to become problematic now, the sooner they can start treatment the better. Simple things like holding a conversation are difficult because he loses the thread of what he's saying, and it's so painful to see. We had to go to the hospital to see his counsellor and he was adamant he wanted to get the bus rather than have a lift in DS's car. On the way to the bus stop, he walked out in front of a car while I was in the newsagent getting change for the bus, luckily the driver stopped but he had forgotten I had asked him to wait for me outside the shop.

No news from the oncologist team yet, his counsellor accessed his records on her screen to see if an appointment had been made yet but there was nothing.

He's going to the football tomorrow with my dad as usual (he feels trapped being at home all day without being able to drive) but I've arranged for him to have a hospitality pass so he can sit in a comfortable seat and go indoors if he needs to. It is like the man I have loved for 20 years is slowly disappearing, and it's so hard to deal with.

OP posts:
Willowkins · 12/01/2019 08:28

Oh Gretchen so sorry to hear this. I think you have done the right thing to give up work for a while although, if you can arrange for someone else to look after him, I find working a few hours a week takes my mind off the horribleness of it all. I hope you hear from the oncologist soon. The waiting can be like forgetting to breathe. Flowers

AndNoneForGretchenWieners · 12/01/2019 11:05

He's back in hospital. He's developed a chest infection and woke me in the early hours being sick. They are quite hopeful that intravenous antibiotics will work their magic, but we are in the a&e corridor yet again :(

I aim to go back to work once we know the plans for treatment, so I can work around his schedule. It's the not knowing that is stressing me out and I can't concentrate, i'd be useless at work at present and think it's better to preserve my reputation by being off sick rather than being in and making cock ups. I haven't taken any time off before since his original diagnosis so it sort of feels like I'm giving in now, but my manager has been fantastic and all my team have rallied round to cover me.

OP posts:
TheGonnagle · 12/01/2019 17:42

I have no sage advice, just wanted to give you a hand hold for another difficult day x

TheFaerieQueene · 12/01/2019 17:54

I’m so sorry you are both going through this. Flowers

ChristmasFlary · 12/01/2019 18:01

Sorry to read this xx

Do you know what type of tumor it is?

My Dad had a scan and then a biopsy which showed GBM.

Hope yours is better news Flowers

mommybear1 · 12/01/2019 18:52

Handhold here OP Thanks

Westiegirl3 · 12/01/2019 21:11

I'm so sorry if your DH's I'll health, thinking of you both

AndNoneForGretchenWieners · 12/01/2019 21:47

Christmas all I know about them are that they are large space occupying lesions which are consistent with metastatic deposits. One of them has considerable mass, and together they are almost touching all sides of the right cerebral hemisphere and temporal lobe.

He's been admitted onto the oncology ward with pneumonia today. He's feeling quite miserable this evening, not helped by his bloody ex wife turning up and practically sitting on his lap and stroking his head. He hates having his head touched because he has a big scar there from a childhood accident - she was married to him for 13 years, surely she should know that? I was quite annoyed that she wasn't giving him any space, he kept trying to move away and at one point even stood up and walked away. We've been together for 20 years and he was on his own for 8 years before that, so I don't know why she was being territorial. Ugh. I think if he wasn't so unwell I wouldn't be so annoyed, because we all get on reasonably well.

Blimey, I have moaned a bit too much tonight. I'm blaming exhaustion and a brain that won't switch off!

OP posts:
namechangedyetagain · 12/01/2019 21:57

So sorry to hear about your dh.
Some brain tumour charities - brainstrust, the brain tumour charity, brain tumour research and headcase (the GBM charity).

Sadly we didn't have time to make use of any of these but they do have a wealth of information and guidance.

Will be thinking of youFlowers

Lollypop701 · 12/01/2019 22:04

My heart felt sympathy op. I can’t offer anything else Flowers