DP brain tumour. Where do we start?

[Pistachiochiochio]

Total shock - last week we thought DP might have started having migraines. Yesterday told he has a brain tumour, probably cancerous. Just been admitted to the neuro ward. I don't know what I'm looking for really, maybe a place to be able to listen and talk.

We have a 6mo baby and no family nearby.

The thing I mostly need is my baby to take to Solids better than he has. But he's now taking big feeds overnight, back to suckling to sleep, and i really need him to take some calories from someone other than me (he's a bottle refuser).

You need to go cold turkey between 11pm - 6am. If he wakes, no food. My DS used to eat like a trooper at night, wake for feeds then eat little in the day. As soon as I refused milk in the night suddenly his appetite during the day perked up. It takes a few days for him to figure out asking for food in the night doesn't get him any.

@roses2 I was thinking of this gradually but it feels cruel to do it now when he has had so much less of my time attention than he is used to.

In the night when I try to comfort him without offering the breast he just scrabbles for my boobs. I want him to be held and comforted but obvs no DP to do that just now! Will wait until it's less hot anyway as so warm at home it seems unreasonable to deny him a drink overnight.

I agree, now is not the time to do that. Sounds like you're doing a great job holding everything together 🥰

Hi Pistachiochiochio

How are you and DP?

Bless you and your family

Hi all

Surgery (awake resection) went really well, consultant very pleased with that and the post-op CT. MRI today.

DP has been mostly sleeping, yesterday lots of pain and being sick, hard to see him in discomfort. Overnight and today mostly sleeping, has eaten but still some disorientation.

He fell early this morning- "unwitnessed". I've made it v clear that I am unhappy about this and want to know how it happened (he shouldn't have been getting out of bed/been unattended). Another CT scan to check (standard practice after a fall on the neuro ward) and apparently no issues from that specifically.

I knew these days after surgery would be the hardest. I suppose I didn't appreciate what that was going to feel like. I thought I was tired enough as a FTM before this happened!

Have learned a bit from the clinical nurse specialists about how chemo/radio might pan out.

My big lesson for anyone going in for brain surgery is don't just give someone your phone. Write down your passcode somewhere! I think he's forgotten it.

Also smiling wrly at the people who say "how can I help?" And then make it all about them

The first days/weeks after surgery are the worst. It does get better from here. Memory is trashed for a while, should hopefully improve. Might get worse with radiotherapy. I’d really recommend joining the brain tumour charity carers support group on Facebook. You can ask questions and post updates on there. People are going through the same thing and will offer help and advice. They are very supportive.

I am in awe of how practical and together you seem to be @Pistachiochiochio . I am really glad the operation went well. How frustrating about the fall. I hope you can get the practical, day to day help you need over the coming weeks.

I would second the suggestions about Power of Attorneys at some point, just in case something happens and you need a right to intervene.

Glad the surgery went well, the wait for the histology results will be the longest wait of your lives - but until you get them you really don't know what the future holds. My uncle had a tumour removed in 1989 and no recurrence at all! Take help that's offered, when people offer they mean it, and keep a list of everyone who has said "if you need anything ask". As for remembering passcodes, the bruising from the surgery can cause short term issues that will be fine in a few days, but that is a good lesson for us all!

Take care

Glad the surgery went well, but bloody hell he shouldn’t have been getting out of bed, hope someone gets pulled up over that.

Jack gave us all of his passwords before surgery (luckily), he was very unsteady on his feet following surgery. He is a lot more forgetful now though.

DP will go for a fitting for a rt mask (assuming he is having 6 weeks radio/chemo. We were lucky that Jack’s treatment was around 8am every morning - we asked for early appts so that DH and I could still go to work after. Anti-sickness tablet at 6am, chemo tablet at 7am then off to the hospital. The radio needs to hit the spot around the same time as the chemo so it gets a good blast.

Do you live near the hospital? For us it is 35 miles away.

You are doing amazingly well x

So sorry. If you're at Kings I anaesthetise there, more than happy to babysit/drop you home cooked frozen food/hugs if it would be any good

Try to stay positive. My mates dad was diagnosed when in 4th year of uni, given 1y prognosis when operated on at King's... 11yrs later and he's still here on oral chemo

Hugs. Sorry you're going through it xx

Wow thank you for all your replies!

I am being practical as a coping mechanism because it's the only thing I can do.

I spent 15 mins trying to pack up his stuff ready for the move to HDU and then realised I should have just been holding his hand. He is getting a drain fitted tonight.

It was easy giving the good news out of surgery to his friends and family the other day. And ok telling them he had a tough day yesterday. Thay was to be expected. But today I am being massively selective and evasive in my updates to them (beacsue of the fall I guess) and that feels quite lonely. I need to have a cry and a rant to someone who is my friend, but not my lovely mum who is staying and basically looking after our baby.

I just don't want to leave him until I know he is safe. It's hard when there's so little response/engagement from him.

Hi Pistachiochiochio,

How are things with DP?

Hi @BellaVita thanks for checking in.

He's still jn hospital. 2.5 weeks since the craniotomy (they got over 95% so that's great). But has had hydrocephalus so we've been on a merry-go-round of head drain, drain challenge, drain out, up and walking, fluid leak, Lumbar puncture x 2, lumbar drain in, lumbar drain out (because draining too much) and more LP. He's also got infection somewhere so on strong antibiotics.

It's so hard to watch

Biopsy came back - cancer was originally slow-growing but the pathology shows its become more malignant so it's grade 3 now. That was hard to hear as well.

I hear the hubbub of people getting excited about jumper weather and pumpkin spice lattes and I'm going to have to move away swiftly so I don't lash out at any of them.

All of this is going to be so much harder when it's no longer warm, dry weather and light mornings and evenings. And our baby is a DELIGHT but OH is missing so much. And not talking to me (or anyone) about how he is feeling.

This post made me emotional. I love humans x

It's funny (peculiar) watching how people respond to this type of news as well. Some people are so good about making it about them/placing their emotional reaction back on me. Others offer to help but create so much admin when they do. Other people are amazing - they say or do exactly what's needed with no fuss.

I find myself astonished when people ask about biopsy results. It feels so intrusive.

I'm normally an open and tactile person but I am finding myself shutting down conversations and hugs with my closest friends at times.

Also, he's got a flipping infection and a head wound and there was a FLY on his bay just now. I have put the fan on DP hoping that will prevent any creatures from landing on him.

It's the nature of illness unfortunately, particularly things like cancer where most people (fortunately) have little experience of what to say to people and often put their foot in it, either by offering things that they can't fulfil in reality or don't really know what to say or do. But equally asking you to make decisions as to what you want from them, is putting overwhelming pressure on you too.

But generally people are good people, if you can give local people practical tasks it's often helpful. "Please pick up this bag of laundry from my house and drop it back when it's done" type thing, but equally I totally get even the idea of delegating stuff is overwhelming

Just try to keep one foot in front of the other, slowly things will improve, it's often difficult to see the small wins when you're "in the thick of it" but they will be there. Try n encourage him to sleep as much as possible - eye masks/ear plugs are game changers as the wards are so noisy I often wonder how anyone manages to sleep. If he's up to a trip in the wheelchair sunlight is fantastic for helping with circadian rhythm

If there's anything I can help with pls just shout x

I have an advanced cancer diagnosis myself OP & I’m in my mid 40’s. I can relate so much to the feeling of shock you describe, how surreal the whole process is. None of it feels real. Suddenly this thing that only seems to happen to other people is happening to you. As others have said all you can do is keep going, keep putting one foot in front of the other & taking each day at a time. You are given a lot of new information to process after diagnosis & it changes all the time depending on how the person responds to treatment. Thinking of you, your DP & your baby x

@Pistachiochiochio I hear you 😥

With regards to DP not talking, Jack was like this and still is. I sit and watch him sometimes and wonder what he is thinking.

Bastard cancer 😡😡

We are all here for you ❤️ xx

A close friend of mine has breast cancer, which has spread to her lungs and brain. It was very rough for a while and inoperable but the oncology unit was amazing and she received the best care and treatment which have reduced spread. Chemo is ongoing but she's doing so well, travelling, making the most of life.

Please try to stay positive, there really are some remarkable treatments out there. Sending love ❤️

@Pistachiochiochio

Hello, just wanted to check in with you and see how your DP is?

And how are you?

Thank you so much for checking in.

DP is so much better. Everything went from 0 to 60mph once the drain was out, and discharge planning felt so rushed. He stayed in another night to wait for community care but then was told wait 6-8 weeks for the package or stay in til Monday. It's ludicrous - he's medically well to leave so blocking a bed.

Just want him home now even if I have to pick up the slack/call on more helpers.

Just wanted to say how strong you sound in the midst of such uncertainty with a small baby too.

If you are anywhere near The Wirral there's a wellness centre run by a brain cancer survivor, lots of support and holistic treatments to support the conventional approach.