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Original poster

The calm before the storm

999 replies

Willowkins · 02/06/2018 12:55

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

OP posts:
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loubieloo4 · 27/05/2020 18:48

@notapizzaeater so sorry 💔 if the morphine isn't giving him relief I would contact his gp, they should be able to help.

@chinchin77 it's just relentless.

Dh is doing ok in himself at the minute, the steroids seem to have been a huge help. Which worries me even more! Does that mean that he has brain mets and they are helping or he just needed a pick me up argh 😖 the constant second guessing is such a mind fuck.

notapizzaeater · 27/05/2020 19:44

@loubieloo4. We got told the steroids reduce all swelling (I know DH didn’t want to come off them as all his aches and pains went) so might be that ?

loubieloo4 · 29/05/2020 18:50

@notapizzaeater how is DH's pain now? Hopefully much better

notapizzaeater · 29/05/2020 18:58

@loubieloo4 not much better tbh 😢. He's type 1 diabetic and gone the lowest I've ever seen today, I was minutes away from calling an ambulance

loubieloo4 · 29/05/2020 19:35

@notapizzaeater oh no, that must be so hard having the extra health worries. I'm having a really shit day to. Hugs from me x

yoloPenguinsEatfish · 29/05/2020 22:38

nota and DH Flowers and hugs from afar. They must be able to balance the diabetes and the pain surely?

and loubieloo4 sorry you've had a bad day, hope tomorrow is a better one for you all.

chinchin77 · 30/05/2020 04:58

Hugs to you all 💞. DH had immunotherapy yesterday, am just looking at him - so frail. Just heartbreaking times for us all.

chinchin77 · 30/05/2020 05:51

I recommend this podcast, about to order book:

podcasts.apple.com/au/podcast/griefcast/id1178572854?i=1000445756941

iwantavuvezela · 30/05/2020 07:55

Starting the morning on my own, cup of coffee, before waking up DH for the first round of meds - I’ve come to love this time (usually not a morning person) just sitting on my own, before the day begins. been thinking of everyone as so many partners / Dh’s Are having a really tough time - sending thoughts and love to all

notapizzaeater · 30/05/2020 14:38

Hubby been took off in an ambulance, was walking round this morning saying he couldn't find his pants (they're in the same drawer they've been fir 15 years !)

Heartbreaking not being able to go with him.

yoloPenguinsEatfish · 30/05/2020 18:29

oh nota I'll hold your hand across the ether... when will you hear something? xx

notapizzaeater · 30/05/2020 19:29

They can't do the mri they need to as it's a weekend, they keeping him in overnight for observation 😢

iwantavuvezela · 30/05/2020 19:43

Sorry @notapizzaeater - hopefully thyme can get his pain under control as well, hope you can use the time to rest as well - I’m here if you need a handhold

notapizzaeater · 30/05/2020 21:47

They've just popped him on oxygen as a preventative measure, his normal levels are between 88 and 90 but they aren't listening to him 😏

He's eaten half a sandwich and 2 biscuits all day, told him to make sure they know he's not eating

loubieloo4 · 30/05/2020 23:20

@notapizzaeater hoping dh feels better and has better pain control. Another handhold here if you need it x

chinchin77 · 31/05/2020 02:47

@notapizzaeater a hand hold from afar. 💐

loubieloo4 · 31/05/2020 15:51

Any news @notapizzaeater on dh today? I hope you managed to get some rest.

After a rough couple of days (me) dh and decided to go for a walk with my parents in a local park. First time we have been out in 11 weeks and saw someone other than the kids! It was just what we needed, I feel so much better and dh loved the sunny walk. We waited until 7pm and dh wore a mask. Lots of people around but all well over 6ft away.

Life is to short to be locked up at home. For us it was worth the risk, my mental health needed it and dh needed the decent walk. My parents have been isolated for the full 11 weeks (for us, they are not vulnerable) so no risk to us.

notapizzaeater · 31/05/2020 17:26

@loubieloo4 this sounds amazing 😍

DH is home, ok but making silly mistakes, he tried to put a spoon in the dishwasher vertically in the top rack and didn't know why it had dropped through. Just silly little things! He doesn't think he's confused at all ..... he's better at home as the ward was empty with hardly any staff so was being self sufficient- I can keep a better eye on him. They are booking an emergency mri at some point next week. His last brain mets started like this 😢😢

loubieloo4 · 31/05/2020 18:07

@notapizzaeater dh was very much the same with confusion, the steroids have made a massive difference, any chance you could speak with his team tomorrow and get some?

notapizzaeater · 31/05/2020 20:19

We've got some left over from last time - his oncologist is ringing tomorrow so will ask her then.

yoloPenguinsEatfish · 31/05/2020 21:04

nota I'm glad he is at home, and hope you both manage to get some sleep xx

notapizzaeater · 01/06/2020 00:34

It's taken me about an hour to get him sorted for bed, he couldn't tell which tablet box he should be having (I wrote day and night in them before he went into hospital). He couldn't remember which insulin he needed 😭. I think it's def back in his brain - it's really really shit this. He's upset because he can't remember

I really really don't want to do this - I don't want to adult today 😥

iwantavuvezela · 01/06/2020 07:53

@notapizzaeater sending you much strength and love - you are right, it’s really hard this, especially been the other adult in the house doing the caring. We are here for you today if you need somewhere to chat

@loubieloo4 - I take DH for walks every day, (he really needs to build up some strength) and we meet a friend outdoors once a week for his (and mine) mental health - it’s done him a world of good and also making him more grounded with these interactions. He told his Dr and they were fine with it, I understand the risks but have had to manage and balance the greater picture - I wish we didn’t have the pandemic lurking as an extra fear.

Hope everyone else is okay

yoloPenguinsEatfish · 01/06/2020 08:52

notapizzaeater dont adult today if you dont want to - do the bare minimum, be kind to yourself xx

notapizzaeater · 01/06/2020 10:35

Right, I've had my tears, I've pulled my big girl pants on and I'm back ! Fuck you cancer.

Local hospital phoned DH and booked mri for next Sunday ..... I've rang Leeds where he had gamma knife in December - Ive got him a mri in the morning and we've restarted the steroids - the boss of the clinic is meeting us there to check it quickly (before doctors later) and will give us some more steroids if needed until it's been properly checked.

Had to laugh this morning, he'd scraped all the leftovers from tea into the sink not the waste disposal, cold claggy food .....