Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

I'm sending hugs - so very sorry xx Although I knew my DH was dying, when he did - oh god. No words can make this any better. I am here for you though.

Thinking of you @Spoon27 xxx

Hello all.

@notapizzaeater pointed me over here from my thread last night. DH has brain tumours. He's had one since 2014, it was removed and all was clear to 2018. Then he had radio followed by chemo which stopped the growth. Last month, we learnt he has 2 new growths. So we've started the chemo merry-go-round again. No chance of operating or biopsies which means we have to wait and see how they respond to treatment so the consultant can try to figure out what kind of tumour /prognosis. DH is developing balance issues, they're not as bad today as they were last night - possibly because of increased steroids, possibly because he's less tired, possibly because brain tumours are weird...

Hi @PlantPhoenix, I’m sorry this is happening to your family, it’s shit. My DH had his original tumour removed in 2017, and had 2 years cancer free before it came back and it’s been a running battle since then. Kidney cancer is incurable, and we are now on the last stretch unfortunately. This thread has been such a life line. Wishing you all the strength.

Hi PlantPhoenix I just read your thread and it sounded so familiar. You'll find lots of support here.

Thanks for the welcome. He's had a really rough day because his nurse practitioner said she agreed with him when he wondered if the tumours are growing quickly. Steroids have been upped from 1mg to 4mg to 8mg. They're sorting a scan for him much earlier than planned. It's so horrid.

Hi Plant It's pants isn't it. The nurse doesn't know and can't possibly know without a scan - and they're usually so careful not to say the wrong thing. However, maybe she thought that her honest opinion was what was needed at that time - even if the message was brutal. I hope you get a quick scan.

She is normally so careful, and DH doesn't always relay messages well - I was at work so ill have to wait and see.

I was wondering if you were there at the time. Maybe that's not what she said but that's what he heard if you see what I mean. We're here when you get the results, whatever they are.

Hope today is going as well as it can.

We've been looking for DS first car, I almost feel paralysed by fear of making the wrong decision.

I've been offered some work in my field (SEN procedures/law) just 6 hours ish a week so I've taken it on. Mainly attending meetings with the local council to make sure they are behaving !

Congratulations @notapizzaeater.

I need to choose a new car and completely identify with your fear.

I spent yesterday hunting the town for enough steroids to fulfil his new prescription, his dose has been increased massively. He's also hit a really low point and is truly considering his mortality for the first time 😞

Hi Notapizzaeater I felt the same and ended up buying the same as my old car - except now it's electric.
PlantPhoenix that's deeply frustrating and sounds like you are being run ragged. Are you getting any support and, dare I say it, time for you?

Welcome plant. Hugs that sounds rough. I too had several times where I was running around town chasing up sufficient meds. I hope you got it sorted now. And massive hugs with DHs low mood. It's really really hard. I read lots of blog and twitter posts from people in similar situations full of inspiring quotes and focus on the positives blah blah. I wasn't really prepared for the awfulness of the reality.
Good luck with the cars, Plant and notapizza!
And congratulations on the work notapizza. That sounds like a wonderfully low stress job.

Three weeks since my DH passed. It feels like forever and no time at all. It's been the most emotionally complex and intense 3 weeks of my life so far. It's all so much.
We had a lovely small family funeral, just what we needed. We had a coffin we could draw on and everyone wrote on and decorated it. DS7 in particular became chief decorator and covered it in flowers, hand prints and various other things.
We'll do something bigger for the wider family and friends next year when covid restrictions hopefully lessen.

That sounds like a lovely funeral Spoon27

We have managed a trip away while builders make our bathroom accessible for DH. It’s been lovely, but also so so sad. I keep having to go cry in the toilet because the contrast in DH since we were here less than a year ago is so confronting

Glad you managed to get away @Frikonastick - it's mentally draining 'holding it together'

@Spoon27 love the drawing on the coffin idea, sounds like a lovely funeral.

Hope,you're all doing as well as you can.

I thought I was doing ok, till I went to DH work place yesterday to fetch his desk stuff and proceeded to burst into tears on the bewildered security guard.

@notapizzaeater
How understandably upsetting that would have been. The grief just catches you doesn't it? Walked through a supermarket yesterday and caught sight of my DW's favourite sweets and burst into tears. Of course Christmas is intense anyway. Christmas now is full of memories of her being home from major and very traumatic surgery, a pause of safety warmth and comfort before the unknown horrors that were to come. Wishing you so much love @notapizzaeater and everyone on this thread

@notapizzaeater, I did a very similar thing in august when DH was unable to go back to work, and they asked me to go in and clear his desk. I proper ugly cried while I did it. I actually scared myself a little bit. Luckily I was alone. Sending you and @Joystir59 all the love xxx

We cope don't we. We carry on with life and for a little while we're able to forget how sad we are. But then something happens, a memory, a photo and we feel that pain all over again. I think it's a good thing. I think it's healing. Sending you all lots of love, peace and strength this Christmas.

And we're officially at the "months rather than years" prognosis.

@PlantPhoenix, it’s such a massive milestone isn’t it

((Hugs)) @PlantPhoenix

It's hard to hear that, how have you taken it ? My DH put his fingers in his ears and refused to acknowledge it at all.

I have all the feelings. DH was utterly blindsided, whereas I was not so much - it's probably easier to see from the outside, as it were. He's hidden in bed all day, feeling rubbish. I've given him that, and will for a couple more days and then I'll give him a kick up the arse. Does that sound cruel?