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

@Frikonastick that's hard, I know with my DH he didn't look ill till the very end and continued to work until a month or two before so people just 'forget' and carry on regardless. The reality was he was ill and had lost loads of weight and needed to sleep all the time but people didn't see that side of it. Not that I was having to do everything as he was so tired he couldn't do anything in the house and I was on my knees juggling and trying to stay positive and keep smiling.

Hi All,
Sorry to have been MIA!

I have had a 'cancer' break for a while. Will have a read and a catch up.

@notapizzaeater, yes exactly, exactly that

That was one thing I struggled with in the early days - suddenly everything fell to me to sort out. DH was already quite poorly when he was admitted upon diagnosis and was put on tube feeding straight away. His speech was also very poor.

It's not just the life admin, but the cancer admin seemed never ending and quickly all the hcps involved were having to go via me as his speech was bad. I was quite surprised how poorly they were set up for non verbal patients as he could communicate fine through writing or a text to speech app. Even email. I don't know how I'd have coped with kids to sort out. We just seemed to acquire lots of telephone numbers and allocated people.

loobie totally get that. At times cancer seems bloody all consuming and you have to step away.

DH is still here, god knows how. So frail but still peaceful. Had to get the district nurse out last night as he was a bit agitated but they got him sorted and he's more settled now. He sometimes responds to me by physically squeezing my hand or stroking my arm which is lovely. I'm glad he knows I'm here and I'm able to give him comfort. I feel awful as I just want it to be over now, for his sake as much as mine.

I hope you don't mind my posting. I just wanted to pop by with a virtual hug for all of you.

He's gone. I'm broken.

@ClashCityRocker (hugs). We're all here for you xx

Hugs @ClashCityRocker - I've been off this thread for a while, we are all here for you xx

Nothing prepares you and here I am almost a year later and his death feels like yesterday.

Oh @ClashCityRocker I’m so so sorry xxxxxxx

Hugs Clash - just over 2 years since I 'graduated' from this thread - I am so very sorry for your loss

Hi, I was kindly directed over here from another thread. Hope it’s ok to join? My husband was given a diagnosis of pancreatic cancer yesterday after 3 weeks in hospital having a diversion op and then today a bile duct stent, as he has been turning yellower by the day. Don’t know what stage, but tumour inoperable at the moment as leaning on the portal vein. Really not sure what else to say tbh.

@pippitysqueakity welcome to the club nine if us want to be in. You can scream and shout in here, no one will judge you. Or just natter about your day x

*nine Doh - think the suns gone to my head

Try .... none ! X

Hi @pippitysqueakity, you must still be in the shock phase, where it all seems insane that this is happening to you. Shoulder bumps in solidarity, sending you strength xxx

Sadly, we have been down this path before as 6 years ago he had bowel cancer, radiotherapy,surgery,chemo colostomy bagand all clear last year. Now this. Primary not secondary which I think is a good thing. Today on my visit, I could see the stent had worked as less yellow. But now I’m a bit worried as two/three nurses told me I no longer need to only have the one hour per day previously required, I could stay longer and come more often. Does this sound a worrying thing? I mean, are they trying to make sure I see him a lot ?

I'd ask the question tbh, is it just you allowed to see him more often - maybe they are just opening up the visiting more as we head towards 'normal ?' (I've forgotten normal !)

No, I’ve checked no COVID restriction changes to visiting restrictions atm.

You need to speak to someone, when my DH Was end of life my DS and I was allowed in with no restrictions. He was in for 3 days before we managed to get him home which I stayed with him the whole time.

Thanks guys. The last few days have just been a bit of a blur, but funeral is sorted and I have most of the admin in hand. They've still not taken the bloody bed though.

Trying to find moments of peace in between waves of grief. I miss him so. Someone described it as standing knee deep in the ocean, and the grief is always at a certain level but sometimes manageable and then you get a huge wave that just overtakes you completely.

pippity sorry to hear what you're facing - it is worth asking the question as it will only torment you otherwise. I was allowed unrestricted visiting for the final three months my husband spent in hospital before he came home and this was back in March when the situation was a lot worse. Even within a hospital, I found some wards much gentler than others and extended visiting allowed in compassionate circumstances - with cases so low I wouldn't be surprised if this extended to someone who had just been recently diagnosed.

@ClashCityRocker I am so sorry

And @pippitysqueakity hopefully the stent will provide great relief. It has been almost a year since my DH turned yellow, he has bile duct cancer (they thought it was pancreatic until he finally had his Whipple's, but by then he had tumours in his liver too).

@ClashCityRocker I had to shout at the bed company eventually, they where quoting another week to collect it and it was in my living room, so I had a huge sense of humour failure and it was collected the next day.

I work as a teacher and there have been confirmed COVID cases in school last week with several full classes being sent home. Have Drs appointment for later today for advice as I couldn’t bear to have to self isolate and not visit DH. COVID adds a whole new layer of worry doesn’t it. Nurses seem to have gone back to normal, maybe it was only post procedure. Stent making him less yellow, almost back to normal but he still feels very sick all the time and not yet taking food at all.

Hope everyone is doing as well as we can.

It's 6 months today since DH died, it's gone both so slow and so fast.

9 months for us. Absolutely - fast and slow. Hard to know if it would have felt different without being in covid-world. Still feels like really early days in terms of processing it.

DH just got out of hospital after a week. He now also has Addisons disease. I’m so tired.

@SchrodingersKitty and @notapizzaeater, all the love xxx