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

Thank you @notapizzaeater for being on the end of this chat line! I really appreciate it.
I talked to the surgeon and DH is stable for now. But the surgeon is quite worried about several things and while he expects him to last the night "he's not out of the woods yet". He's gone to ICU where he is expected to stay in an induced coma for the next few days. Really hit me when the surgeon asked who I was with and was very concerned when I said I was just with the kids not another adult. And we're in a damn lockdown with all DH and my family separated by border closures and unable to get here.

Oh @Spoon27 I'm sorry, and also here in lockdown - went through the same last year when DH's family weren't able to visit because of lockdown and the enormity of just 'me' being his carer / visitor, well I'm still traumatised by it all. I had to beg the nurse to let DD visit when he was dying as she had to have a Covid test before. DH had a perforated bowel too, from an op to insert a feeding tube. I'm here too 💐 (Melbourne)

Thanks @chinchin77!
DH has stayed stable through the night. But ICU nurse said she didn't think I could come in due to lockdown (surgeon said last night that I would be able to visit). She offered a nurse assisted video call so I could see him. Gosh I hate covid.
I'm also not sure how much to tell the kids at this point. I told them about the bowel perforation, surgery and that he's staying in hospital while he recovers. Not sure they need to explicitly be told how dangerous current situation is. Especially as he might recover from this. But also don't want to hide it from them. We have a policy of keeping them updated with all the new facts, but not going into all the maybes. But sometimes it's a really hard greyzone.

@Spoon27, I hear you times a million.

It’s so good to ‘see’ you @chinchin77 and @notapizzaeater and @Willowkins

DH has the most aggressive schedule they can do, five sessions, one each day which tree treatments in he is tolerating well.

They have been very cautious about giving much hope this is going to work and are anticipating that DH mobility and continence will become an issue in the near future.

Which is such a mind fuck. At no point were we prepared for that. I mean, according to his oncologist, the chances of this specific thing happening with his type of cancer are so small as to be incalculable.

Yet here we are.

Lockdown is making it so much harder.

@Spoon27 tbh I'd be taking that as a positive, once the hospital told us me and DS could visit 'due to the circumstances' I knew it was game over (which it was - we had a few hours of fairly lucid chat with DS (priceless) before his last conversation with me - he was stood up leaning on me - I was groping and grabbing his willy to put in a wee container and laughing 'it's a good job I love you' and he replied 'I love you too babe' they where his last words before he dipped into a coma. (Still makes me cry every time)

@Frikonastick that sounds hard on you all.

We're off to center parcs in a min, I'm expecting it to be sooooo hard as our last trip was with DH just before lockdown before he started really being ill. He did all the activities with DS, I'm doing some of them with him.

@notapizzaeater
Oh that made me cry 😢 I can't think of what our last conversation will be without being angry. We go to centre parcs every year (26 years in a row now!) I'm not sure I could go without dh, you are very brave. Have a wonderful time.

@Spoon27 I hope you get to see dh soon. As @notapizzaeater said it really is death by a thousand cuts.

@Frikonastick I hear you, every time we speak to someone apparently it's really unusual that (insert random people side effect) is happening.

Dh is in a fowl mood these days, the kids are hiding away. We had to shave his head the other day, both of us were in tears 😭 it's only bloody hair ffs. It seems so symbolic somehow.

Thanks all.
@frikonastick glad to hear he's tolerating the treatment well. Gosh I hate the rare bad luck. But you just keep dealing with what's happening each day/hour don't you. Thinking of you and DH and I hope things improve soon.

@loubieloo4 totally get you on losing it over the little things sometimes. I don't know, I find I don't cry so much with the 'big' things. And then I'm surprised when I'm balling over something little. I hope DH feels better soon.

@notapizzaeater hugs. That sounds like a lovely last few hours filled with just enough of the ridiculous.

And thanks, yep I'm definitely glad my DH isn't among the patients they're allowing visitors at the moment. He's continued to do really well. The surgery wasn't great and he was very high risk for a while there. But he's stable now. Or at least the doc said he's stable for today. They've even stopped calling me with updates every few hours.
They weaned him off the ventilator and he's concious again now.
They are talking about moving him out of the icu and over to another hospital tomorrow, in large part because there are covid positive patients in that icu now and there's been an outbreak within the hospital.

I'm starting to feel more hopeful/confident that this isn't going to be the end. Just another one of the 1000 cuts in the long process.

That's great news Spoon

@Spoon27 that's brilliant news xx

Thanks willowkins and notapizzaeater

Excellent news @Spoon27 💐

Great news @Spoon27 xxx

Checking in @Spoon27 we are all here. 💞

Thanks @chinchin77 and all. I've been meaning to check back in here.
DH has been doing amazingly well. He's on the ward now and his surgeon came to see him today (he was put into isolation after the surgery due to the covid outbreak). And said how surprised and please he is to see him still alive. He gave a few more details of how close things were and how he was not expecting him to make it.
But he's physically recovering really well and they are thinking he might be out the end of this week or early next week.
Mentally DH has been struggling a bit more. Coming more to terms with how close this bump in the road was and in general coming to terms with his situation. And we haven't been able to visit him. So he's struggling. But also doing really well all things considered, it's just a tough situation to be in.

I'm pretty amazed and grateful that we seem to have made it over this bump. But it's also given me a window into the future and I'm not sure how I'll go with many more of these close calls.

How are you all going?

How are you going @Frikonastick and @loubieloo4?

It's the way it is Spoon27. It never feels safe. But such good news that your DH made it over this bump in the road. I hope you get to see him soon.

@Spoon27 it's just a bump in the road - glad he's getting better. Can your hospital refer DH to some counselling? When my DH was in the Hospice they organised someone to talk to him to help.

@Spoon27 Sometimes these bloody bumps feel like sink holes! Glad dh is out the other side of this one.

Dh had another round of chemo again today, he's having one more in two weeks and then a scan. Mentally he seems a bit better in himself and not quite as grumpy.

Just one foot in front of the other one day at a time!

Thanks all! I think some counselling would be great and they've made it available, but DH doesn't want it.
And yes sometimes the bumps feel like sinkholes!

Glad to hear DH is doing better mentally @loubieloo4! Fingers crossed the next chemo goes well and the scan has good news.
Definitely one foot in front of the other one day at a time.

I had high hopes after DH's last scan showed the treatment was working so well particularly on the tumours in his liver. But his swelling has come back over the last week and just like before the chemo it's because his body isn't able to hold protein in the right places and so his fluid is just leaking out. He's on regular albumin and blood transfusions. And it looks like so much fluid is leaking out that he's dehydrated and his heart is struggling a bit. Again. Feels like we're almost back to where he was (symptom-wise) pre-chemo. Just got to keep going till he's well enough to restart the chemo. One foot forward at a time.

Good luck to all!

@Spoon27 my DH resisted 'talking' to the professionals but they just came and sat and had a cup of tea with him and nattered and gradually he fell into it. I think he saw it as a sign of weakness tbh (or making him face up to what was happening !)

My DH has been very open to therapy, mostly I think because he had a positive experience of it before, when his dad passed away very suddenly under traumatic circumstances I made him go. Booked it and drove him there even though he was adamant he didn’t want to, one of our few proper fights. But it was immensely helpful so when his cancer came back we got a referral through the cancer society (in nz so a bit different) for a therapist who specialises in cancer patients, families etc. we go to her sometimes together, sometimes separately and it is the only thing that has kept us sane.

It helps too that she is also an immigrant. So she understands why that adds a whole bunch of layers of difficulty without having to explain iyswim

Lovely people, I know you are all going through such awful times, but I need your help please. My darling friend found out her cancer is terminal today, she has months. She has a DH and small children. I volunteer in a hospice so I'm constantly with end of life patients, but today I'm at a loss. I need her to know that I will do everything I can to support her, but all the words I write just don't seem enough. What do I say to her?

Just tell her you love her. That’s never inadequate xxx

Tell her anything at all, it's the just knowing someone's got your back if needed.