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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:
DustyMcDustbuster · 27/01/2019 23:25

I’ve been thinking of you. So sorry to hear your DH has had a turn for the worse. The visiting hours are awful - can you ask if they’ll be flexible? Good luck with your uni work & hope DH rallies quickly. Smile

Fretfulparent · 27/01/2019 23:37

So sorry to hear all of this. You must be shattered. Do hope you get some sleep. Flowers

Nix32 · 27/01/2019 23:48

I'm so sorry to read this. I haven't posted before but just wanted to add my support. O

chickydoo · 28/01/2019 00:03

Another one adding support and a hand hold. You are having such a difficult time, don't forget to look after yourself too.

JeNeBaguetteRien · 28/01/2019 00:28

Sorry to read your latest update OP.

Hope you manage your uni assignment, I remember you said DH was pleased you were doing this course, but do let them know what is happening so they can be a bit flexible.

Thinking of you all 💐

UAEMum · 28/01/2019 06:56

Sorry to read the update. All sounded positive with the football game etc. Hope things are better today x

BonApp · 28/01/2019 09:38

Definitely enquire about the hospice, they probably won’t have restricted visiting hours, and they will look after you as well.

My heart goes out to you op.

Original poster
AndNoneForGretchenWieners · 28/01/2019 10:51

Thanks. I've spoken to the course leader at uni and have requested an authorised suspension of studies for now, so I won't be penalised, but I can still carry on with the course materials I have if I have the chance to, so when I go back to it I can pick up where I left off easily.

The ward he is on at the moment is the infectious diseases ward, which was the only one with a bed available yesterday. They are trying to move him to oncology, which has open visiting, but there are no beds yet. The nurses on this ward are really helpful though, and got him a comfy reclining chair to sleep in.

The SALT therapist phoned me and said she wants to start him on tube feeding, because he is aspirating food when he swallows, which is leading to the infection. He apparently got very upset at that, but doesn't have to make a decision today. He would not be able to come home if he was tube fed, but may be moved to the hospice. I don't know if that means that they would not treat him if they moved him there though. It's very frightening.

OP posts:
ourkidmolly · 28/01/2019 11:01

Thinking of you. Incredibly tough time for everyone. You'll get through somehow. x

Kittykat93 · 28/01/2019 12:02

Op are they talking about naso gastric feeding or a PEG feed through the stomach? My dad had the latter and we gave him all of his feeds through the tube at home. Sorry if this isn't what you're on about.

Hope your dh is going ok today Thanks

Original poster
AndNoneForGretchenWieners · 28/01/2019 12:18

It's naso gastric feeding they are recommending, with a view to it being temporary at least initially.

OP posts:
eyestightshut · 28/01/2019 12:39

He can go home on a tube feed. If it's something you feel you could cope with then the Dietician who will prescribe the feed can arrange Pump training for you,so you can deliver his feed at home.
Would certainly ask about Whole Brain RadioTherapy (WBRT) as this can have an impressive result in improving symptoms.
Other things to ask.about are Blue Badge Applications PIP and a carers assessment for you .

Chimpfield · 28/01/2019 12:51

I am so sorry you are all going through this, no work Edd of wisdom, just positive energy and prayers x

Chimpfield · 28/01/2019 12:52

Flipping predictive text. Should be no words of wisdom!

Original poster
AndNoneForGretchenWieners · 28/01/2019 13:07

Thanks eyes, I have a meeting with the doctor tomorrow so will ask, but the SALT said today that 99% of patients who are tube fed can't go home due to the risk of dislodging the tube. She also said something about the risk of not being able to remove it to enable normal feeding if his swallow reflex improves, which I didn't really understand, because if it's a temporary measure, why wouldn't you be able to remove it?

He already has a blue badge and PIP, so don't have to worry about that. I am going to have to sort out POA - I have all the forms, just haven't had time to fill them in what with everything that's been going on.

I'm going to ask my dad to come with me to the meeting with the doctor tomorrow, for support.

OP posts:
UAEMum · 29/01/2019 15:22

How did it go with the doctor?

Willowkins · 29/01/2019 17:38

Hi Gretchen, I know you've been through this before but it must still seem like a strange new landscape. No one told us that 'in sickness and in health' meant this. We cope and adapt until the real us is so thin it's transparent. That is why your uni course is so important. It's the real you so don't give up. Can I ask what you're studying?

Bluewidow · 29/01/2019 17:48

You can message me if you need to. I have been through this with my husband. We didn’t get a happy outcome but if I can offer any support whilst your going through this then I’m more than willing x

Original poster
AndNoneForGretchenWieners · 29/01/2019 20:58

Thank you everyone. Today has been particularly bad. My dad and I went in for the meeting with the doctor about DH's swallowing, and he said that DH had two options - the ng tube or thickened food and drink. He said the thickened food and drink was the best option for quality of life, and there was only a small risk of aspiration so it would be fine. So we thought that sounds better than the tube, let's go for that. The doctor said he would arrange for the SALT to come round and it would be good if we could stay, because we would need to know what to do when DH comes home.

The SALT then came, and said that her understanding was that DH had agreed to continue eating and drinking at risk of aspiration, against her recommendations. I said that he was to have thickened food and drink, and she said that it made no difference if it was thickened or not, she had tested the thickened texture out yesterday and he was still aspirating, so he may as well have it normally as the risk was the same, but we needed to know that meant the infection would never clear up. We asked why she was saying something different to the doctor, and she then went off, returning 10 minutes later with the doctor, who apologised and said he hadn't realised that DH had been assessed on thickened food already. So the upshot was that he would have the tube. This was at 11am.

We then were asked to wait in the day room as the consultant wanted to see me, so we waited and she came in and told us that even if the infection was cured, DH's tumour was so aggressive and had spread so much in the last 2 weeks, that any further treatment could only be palliative, he wasn't strong enough to survive surgery, and we were looking at days and weeks, rather than months. I still can't believe it.

I went back in this evening to find that DH's ng tube had not been inserted, so he had gone a second day without any food or drink as he is nil by mouth. The nurse I complained to said that the staff were very busy, and it would be done overnight. I strongly objected to this and said that even if they were busy, everyone else on the ward had had at least 6 meals during the time that DH had had nothing, and two meal times had passed since the tube was agreed as the way forward. Within 15 minutes, the tube had been inserted.

DH is very weak and confused, and is fading fast. I can't believe that only 4 days ago he was at a football match, just a month ago he was at the summit of the highest mountain in Germany. My heart is breaking into a million pieces.

OP posts:
TheGonnagle · 29/01/2019 21:04

I can’t think of anything useful to say, just a tight squeeze and a hand to hold. Bless you x

oh4forkssake · 29/01/2019 21:08

I don’t have anything useful to say either. How lucky is he to have you in his corner.

Sending strength and light to all of you.

IrenetheQuaint · 29/01/2019 21:09

I'm so sorry. Someone I loved died of brain metastases last year, and I couldn't believe how quick it was. It feels utterly brutal.

Thinking of you and your DH x

TwitterQueen1 · 29/01/2019 21:13

Thinking of you OP. Flowers

Kittykat93 · 29/01/2019 21:20

The end can be so horribly quick and it can be so so hard to get your head around. I'm thinking of you a lot and checking back to this thread often. Thanks

PloddingOnwards · 29/01/2019 21:24

Thinking of you Thanks