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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:
smartiecake · 29/01/2019 21:26

I have been following your thread and i am so so sorry to read your update. Also sending a hand hold. Will be keeping you and your DH in my thoughts.

FrenchSchnoodle · 29/01/2019 21:38

Oh my goodness. I've also been thinking about you and your family. I've been through a similar experience and your last post made me upset. I really feel for you.

I know this is an internet site but I genuinely have you in my thoughts x

namechangedyetagain · 29/01/2019 21:44

I have been reading and thinking of you. My gorgeous bro had an aggressive brain tumour (gbm). Have nothing to add but just to say that I'm thinking of you and hope you have some real life support Flowers

ScarletPower · 29/01/2019 21:52

OP

I don't have any words. I'm just so sorry you, your DH and your family are going through this, xxx

Willowkins · 29/01/2019 21:55

Gretchen, you have been so generous with your support for me and others and I'm so sorry this is happening to you and yours.
It's awful to think that he needs you to advocate for him. And now they are telling you that they won't operate - do you think it's worth getting a second opinion?
Also, might I suggest getting him referred to a hospice as in my experience they are just all round kinder places than hospitals.
Flowers

HamiltonCork · 29/01/2019 22:01

Thinking of you and your family Flowers

sodabreadjam · 29/01/2019 22:36

So sorry to read your latest updates. My thoughts are with you and your family. Flowers

Knitwit101 · 29/01/2019 22:42

I am so sorry to read your update. That is hard news to take. I hope you have a few stable days now his tube is fitted to build up some strength and think about what comes next.

TheMadGardener · 29/01/2019 22:44

I just found this thread and I am so sorry for what you and your family are going through, OP.

My DH was diagnosed with stage 4 bowel cancer (with liver and lung secondaries) nearly 2 years ago. He is stable at the moment but has no energy so can't do any of the things he enjoys, and getting him to eat is so exhausting. I know that people can live with cancer without much change for a while and then suddenly go downhill.

Sending you so many positive thoughts for the days ahead. Flowers Flowers Flowers

YeOldeTrout · 29/01/2019 22:47

Wow, OP, everything happening so fast. :( Flowers
Take care of yourself. Don't forget to do that, too.

1hello2hello · 29/01/2019 22:54

I'm sorry you are both suffering. Well done for sticking to your guns over getting him some nutrition, it really shouldn't need to be like that. I hope tomorrow you both feel more cared for by the NHS.

Bluewidow · 30/01/2019 01:48

Oh this sounds almost identical to what happened to my husband. Please ask for them to transfer him to hospice if they haven’t already started to look for one. Forget the visiting times now you just turn up and be with him. Also, I was told my husband had 2 weeks he went so much sooner- not to scare you further but you make sure you hold him and have as much time with him as possible. He is a warrior to have gone through what he’s going through.

LadyLapsang · 30/01/2019 09:09

Gretchen, thinking of you and your family.

In your position I would try to get your DH transferred to the hospice or to hospice care at home. An acute ward where communications is poor, they are overstretched and you are restricted from visiting is no place to spend your last weeks.

Arguing for the care your loved one needs is so exhausting. When my parents went into the hospice, all that was taken away. Their comfort and wellbeing was uppermost in all things. We could stay 24/7. They had a lovely en suite room overlooking the garden. The staff were mature, professional, experts in palliative care and so caring. If there were any staffing pressures, I was never aware of them, you pressed a button and the nurses were there straight away.

I didn't even have to think of grocery shopping. I was allowed to eat in the staff restaurant and you had access to a kitchen for making drinks. Since then, they have built a cafe.

Take care of yourself. X

UAEMum · 30/01/2019 09:37

I'm so sorry to hear the update. Im thinking of you both often. Hopefully he will be feeling more comfortable now.

Riotingbananas · 30/01/2019 10:28

Oh Gretchen, such a sad update. Sending you Flowers and thoughts. I second the hospice route. It feels like a huge step to take and an admission of where you are at. Once they get involved though, it's like a big blanket of gentle care being wrapped round all of you.

Like your DH, my FiL went downhill very rapidly with his brain mets. The acute ward he was on was actually very good, but no-one put forward the hospice idea really. In the end, I rang the hospice myself and once the palliative care registrar there got involved, things moved rapidly to get him moved. I cant tell you how different it is once you get there - the patients receive outstanding gentle care, and the staff have time for all of you. The pressure of trying to sort everything out yourself is taken off you, and you can just 'be'.

How might you feel about exploring the option of a move to a hospice?

AndNoneForGretchenWieners · 30/01/2019 12:52

I've asked the doctors this morning about transferring to the hospice. I was asked by the nurses to come in and sit with him because he had a bad night and was struggling to breathe. When I got here he had the curtains drawn and a doctor was inserting a new cannula, he was on oxygen and his pulse was 153. The doctor told me that he's got a blood clot on his heart, they are treating that with an injection and crushed tablets via ng tube. It's so shit. I can't stop crying.

OP posts:
Whoateallthecheese · 30/01/2019 12:57

I'm so very, very sorry you're all going through this Flowers

daduck · 30/01/2019 12:58

Oh I am so sorry.

I'm another one seconding thirding fourthing the hospice - the care my mother got was second to none and they really did care holistically for all of us.

Thoughts are with you x

weechops · 30/01/2019 13:18

I am so incredibly sorry for your husband going through this. And for you and your son. You will all be in my thoughts Flowers

JeNeBaguetteRien · 30/01/2019 13:37

Gretchen you're on my thoughts, I'm so sorry things have progressed do quickly.
Hope you and your son can spend some time with your husband and they make him as comfortable as possible. 💐

ajandjjmum · 30/01/2019 13:38

Thinking of you all.

Pinotwoman82 · 30/01/2019 13:38

Oh OP I’m so sorry Flowersxx

AndNoneForGretchenWieners · 30/01/2019 14:00

They've made the referral to the hospice but he's too poorly to move at present, the doctor is worried he wouldn't survive the transfer. He's been moved to a side ward so we have some privacy, and can be a bit freer with visiting. DSS2 has just gone to speak to DSS1 and give him the latest, I've asked DS to come in. He seems a bit more comfortable now, although his breathing sounds like a steam engine.

Thank you so much for all the well wishes, they are really kind and I am grateful.

OP posts:
BeMorePollyanna · 30/01/2019 14:02

Offering a virtual hand to hold Flowers

TheFaerieQueene · 30/01/2019 14:07

Sending you best wishes at the dreadful time 💐