DH has a brain tumour

[AndNoneForGretchenWieners]

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.

shadow can you recommend a Facebook group? I don't really go on FB much (I try to be careful because of my job) but if I can talk to people going through similar who can give advice, I'll be all over it.

And thanks for all the kind messages x

So sorry you're going through this. I'm not sure I could cope with waiting that long while he is suffering. But of course you will get through it, one day at a time, because you always have. Sending you a handhold and some

I just hope he doesn't deteriorate to the point that he can't be treated. He got really upset earlier just before he went to sleep, worried that he will wake up confused again tomorrow, so I am staying up all night with him so he doesn't wake up alone tomorrow. He can't sleep in a bed any more because he doesn't feel safe, so sleeps downstairs in his armchair. I'm binge watching crap telly because I can't sleep.

Just wanted to send you a handhold OP if youre still up and let you know I'm thinking of you and will say a prayer for you and your husband.

No advice Op. but think of you. I have brain tumours but not terminal they are part of a condition I have and I’m shocked lots of pp got on well with steroids. When I was first diagnosed they put me on steroids even though they disnt need to and I was on 16mg a day and They made me so ill nasty little things and in the end caused me hydophepelus. If I have one regret in life it would be taking steroids. I’m assuming the steroids your dh has been put on are dexamethezone

Thanks silky and movie

Yes, he's on dexamethasone, within a couple of days of starting them his headaches had reduced and his speech was almost back to how it was before. The worst thing has been seeing the rapid change from a strong, funny and competent person to someone who didn't know night from day and takes nearly an hour to get through his meds. I know in my head this means his outcome is not looking good, but my heart is raging against this.

It is really interesting that steroids don't work for everyone, the only people I have experience of who have had brain tumours have been on steroids and found them helpful. What did they do after taking you off the steroids, silky ?

What about the FB group I recommended, OP, didn't it work out?

UK Brain Tumour Carers is another good group but doesn't get as much traffic as the first one.

Both are members-only closed groups, too.

53and3rd I've requested to join but not been accepted yet - I'll take a look at the UK Brain Tumours Carers group too

Just wanted to send you all the best Gretchen. If it's any help at all, we have been through a similar situation with my FiL recently. The remote control confusion really hit home, as we had exactly the same scenario. That head and heart battle is impossible to resolve isn't it. for you and if there's anything you'd like to know about our experiences, do ask.

Hi Gretchen,
Just sending you a big hug. I went through all of this with my mother a couple of years ago. The steroids helped with the pain, but they made my mother extremely aggressive, and insatiably hungry. This was ironic, as she had been anorexic before she developed lung/brain cancer. Her appetite may have sped things up for her at the end, as her tiny stomach was probably unable to handle the increased capacity. (We're talking 5-6 serves of fish & chips amongst other things per day. She was eating like a pelican, but it made her happy, and by that stage that was all that mattered.). It is so sad and so terrifying watching someone you love disappear within themselves as though they are being absorbed by a black hole, so very quickly. Sending you empathy.

Aw, good. I was worried they hadn't 'accepted' you for whatever reason.

Just saw your post regarding DH sleeping in a chair. Do you think he'd feel secure in a hospital bed, or be agreeable to one in the first place? We had one delivered to the house, they have retractable bars on either side so he wouldn't fall out.

So sorry, OP, you have so much to think about

He wouldn't even get in the hospital bed when he was in hospital, he sat up all night in the chair. It's psychological, he's convinced that he will drown in fluid if he doesn't stay bolt upright, even though he knows that won't happen. He's having therapy but it's slow going.

Totally understandable.

The one we had, had a mechanical frame with remote control and could be positioned in numerous ways, including totally upright.

I appreciate It's a big step though and a hospital bed can be viewed as further loss of independence for your DH, too.

I was scheduled to have the tumour removed they are operable but that got delayed as duevthe hydrospelus I needed a shunt. So the I the operation got delayed by a couple of months. That was 6 years ago now. Got other tumours but they only operate if they are causing me problems. Although 6 years is a while ago I think I get so emotional Around the issue of steroids because there was just no need for them. I wasn’t ill at all before they found the rumour and although it was rather large there was no swelling in the mri and they told me the steroids were to reduce the swelling it was like they saw brain tumour and automatically shoved me on steroids without thinking if I needed them or whether they would help. I had my mri on a Sunday so most of the specialist weren’t working so I think this played a major part. When I did see specialist he told me I could stop taking them but with steroids you can’t just stop you have to slowly reduce them and the damage was already done. Tbh I think I’m going to be bitter around this for a long time as it’s likely I will need more operations throughout the rest of my life and the one for the shunt could have really been avoided.

That sounds horrific, silky. With DH, there is a lot of swelling so it makes sense, but i don't get why you would be put on them if you didn't meet the criteria. It's pretty poor to be honest, I know weekends can be tricky but people are admitted to hospital all year round and every day. You must have been really frustrated.

How are things?

He's gone back up to 16mg of dexamethasone and seems more alert and lucid when he's awake. But he is sleeping quite a lot and has little appetite. I've been sleeping downstairs with him since the weekend, it's killing my back but it's worth it to reassure him he's not alone. I can't leave him alone in the house though because he gets very easily confused and panics that something will happen to him.

My dad has offered to take him to his walking football match next week and the club afterwards, where they are holding a quiz, as DH loves quizzes. He's a bit worried that he will show himself up by not knowing any answers, but I think it could help him to keep his mind active, and he will be in a team. It will also give me some respite...

Good idea. It can't be easy looking after him with all the emotion of seeing him sick also.
Glad he is a bit better with extra steroids.
Did you say 31st you are seeing the doctor?

Yes. It can't come soon enough, it is so difficult seeing him with no memory and genuinely unable to figure out simple things like doing his belt up

my dsis has stage 4 breast cancer with brain mets, they were diagnosed in aug 17 , since then she has had whole brain radiotherapy loads of steroids and more chemo. They did shrink a bit after the WBRT but came back and the last couple of months have been hard as now she can't walk and is very forgetful and confused but she has had good periods during this time and for a few months after the WBRT was quite well. I feel its a blessing the memory loss now as she does not appear to know how sick she is .

Hoping that something can be done for your DH steroids although have awful side effects immediately helped my sister

Op can you access services from a local hospice? IME they are wonderful places and offer all sorts of support for the patient and their families too - respite, drop in activities, counseling, therapies.

It was my dad who was ill and a different cancer but the hospice was truly amazing and helping all of us when things got overwhelming at various points. And they seemed to be much better at pain management too.

So so sorry you and your DH are going through this.

It's definitely worth considering. Our local hospice is based on the same site as the hospital, so I can go in and check out what support they can offer.

Today has been quite a good day, he went to the football with my dad, and managed the whole match outside. He says he feels happier for making the effort. He is shattered now, but is looking forward to a family dinner tomorrow.

He has lost a lot of weight this week and it took nearly an hour to get him washed and dressed this morning for the football. He was determined to wear his slippers and I'm ashamed to say I lost my temper at his stubbornness it's like having a toddler at home.

His temperature seems quite low to me - 35.8 to 36. I'm keeping an eye on that because with the confusion and weight loss, it could mean another infection. I don't know how much of it can be attributed to the tumours so I don't want to bother the hospital unnecessarily, I just don't know what to look out for.

Well, yet again DH and I are apart as he has been admitted to hospital with sepsis. He had a really good day yesterday and I thought he had turned a corner, getting out in the fresh air. But when I woke up this morning he was still asleep but struggling to breathe. He was also really confused and had a fever, so I had to call 999 again.

He seems really depressed and the ward he's been moved to only has visiting hours of 6.30 to 8 so he will be really bored tomorrow with nobody to talk to. He's had a nebuliser and more antibiotics, and he's having a brain and chest scan tomorrow to see if he's had a stroke - his mouth is drooping but it's been like that for a couple of weeks. The consultant thinks that the tumour is causing the droop, but wants to be sure. He's also seeing a SALT tomorrow because he is struggling to swallow as well as being difficult to understand.

I have a uni deadline tomorrow, so I am not having the large gin that I really want but DS got us a McDonald's milkshake on the way home from the hospital instead. Here's to a better day tomorrow...

I’m so sorry you’re all going through this. It must be so distressing. I hope your husband stays as comfortable as possible and that you meet your deadline. 🌹🌹🌹🌹🌹