Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

@Frikonastick how are you doing ? I think of you often x

Likewise @Frikonastick and sending you a good night's sleep over there in NZ

Sorry everyone, I don't seem to be getting notifications so missed all these messages since I was last on.

@linspins I'm just so sorry, this is a totally unbearable time for you. Yet you are doing it. You are doing everything you need to do and looking after him and getting through it. And that's amazing. I just wish it was different. I am so scared for this time and am so sorry you're now there xxx

@SchrodingersKitty God what a lot you have going on, I'm so sorry. How are they both doing now? And how are you coping? xxx

Today two of DH best cousins came to see him. Their families have a long history of making fun of each others football teams - friendly rivalry and insults traded frequently. Today, the two cousins came in the football shirt of DH team that he supports. It was the ultimate show of support to him, as usually they'd never been seen in anything remotely resembling supporting that team!! DH managed to walk a short bit into the garden and we sat in the weak sunshine and listened to the birds and chatted. Even though DH didn't join in the banter much, I think he liked hearing familiar voices and family stories surrounding him.
He's upping his morphine dose a bit. The think that shocked me today was his weight loss - it's just falling off at an astonishing rate. I can't believe how the cancer is ravaging his body. His spine, shoulder bones, knees and hips all look pointy now. His legs, once strong and marathon worthy, are saggy and thin. And the breathing continues to get harder. It's crushing to listen to his fighting for breath at the slightest exertion, like moving from one room to another (which he is doing infrequently now).
Daughter managed to get him to record the answers to some questions that she wanted to know - easy stuff like favourite colour or where he went on his gap year. Hopefully he'll sound enough like his old self when she listens to it, despite the breathing challenge.
I feel very alone in a way, even though I have family and friends all helping out. It's because DH and I have shared so much, and know so much about each other that no one else has shared or knows. And I feel it's going to vanish with him, and I will be a shadow. All our memories together, things we could talk about, will be halved. I'm very sad.
I also had the realisation today that all the strong and brave stuff I'm doing now, holding on until he is gone, won't stop then either, as I'll have to be brave and strong for the kids, afterwards.

@SchrodingersKitty how are you doing?
@seethebeauty84 thinking of you. Xxx

@linspins You are allowed to be not brave sometimes too but it can be hard to find the space to do it in, I managed to find some space with the hospice living grief team in the days beforehand and with their counsellors in the weeks afterwards. I don't know if it helps but I recognise and agree with all of your feelings.

@SchrodingersKitty and @seethebeauty84 Thinking of you both.

So the unstoppable journey that we were on came to its conclusion yesterday and my precious, kind, strong, brave, loving husband died at 2pm. We went to the hospice on Friday, at the time I felt like leaving the house with him knowing it was our last departure together was the hardest thing. But coming home without him is even harder.
I'm absolutely spent. Until last night I'd only averaged three hours sleep per night, sharing keeping him company with his two brothers.
I was with him when he dies, and had spent the morning talking to him about beautiful things. I even sung him the lullabies I sang the kids when they were little. It was immensely painful to get the words out but I know he could hear me.
The most brutal aspect of it was that due to him having a tumour encompassing his main heart artery, he couldn't lie down or lie reclined, and needed to be in a sitting position leaning forward to enable there to be enough flow. This kind of worked when he was conscious and had a little neck and arm strength left, but once he was too weak and tired it was like some kind of cruel torture...we couldn't find a position to help him be comfortable, and he had to be propped up with hundreds of cushions wedged into place and him flopped over the hospital table which was across the bed. It was the cruellest thing. I'm quite traumatised from that.
He managed to open his eyes and say a few words to the kids the day before, and tell them how much he loved them and how proud he was. They knew that was their last goodbye and it was heartbreaking.
I'm heartbroken.
Now I'm home, everywhere I look are his things. His phone. His slippers that he wore to keep his feet warm when the chemo made him so cold. His mug that only he ever used for tea. His clean washing in my bed ready to put away.
Where the hell do I start? How on earth do I cope with this pain?

I am so sorry, life is incredibly cruel to the nicest of people sometimes. I wish I could answer the question about getting through the pain but I can't, I don't know the answer but I do know that, somehow, we do get through and you will too.

@linspins I'm so sorry to hear this news. It's both shocking but sadly expected at the same time. One thing that helped me was, one kind soul on here asked me what he was like. Would you like to tell us about him?

@linspins sending love. You looked after him so, so well. Thinking of you and your family.

Is so sorry, it's hard, really bloody hard but we do survive - I'm 2 years on and still have good and bad days but the good far outweigh the bad. I laugh and smile and cry. And it's ok to cry ! My family and friends kept me going the first few days.

Come here to talk and scream x

@linspins my most sincere condolences, I’m so sorry this happened to you and yours. It’s unimaginably hard xxx I’m not yet where you are, but soon. I feel you and @Willowkins , @notapizzaeater , @bloodywhitecat @MontyDonsBlueScarf , @SchrodingersKitty all there ahead of me, lanterns in the dark.

DH came home from hospice to have his final days at home. They didn’t actually think he would survive the ambulance ride, and only sent me home with 2 days of meds. And yet here I am three weeks later, he’s still with me. Hospice can’t believe it, he hasn’t had any food in 16 days. He has stage 4 kidney failure, stage 4 liver failure, Addisons disease, a mesenteric eschemia, a huge blood clot in his heart and oh, yes, cancer! In his liver, in his spine, in his ribs, in his stomach, in his lymph nodes. And the pressure sores. Oh god, the pressure sores.

it defies all logic and reason.

I take care of him on my own, hospice comes in once a day to change his syringe driver and dress his pressure sores. Everything else I do myself. He has three subcut lines so I administer morphine, fentanyl, medazolam, Levo, dexamethasone, hyoscine. Up to 10 times a day sometimes. I clean his eyes so he can see, swab his mouth so he can speak, hold his hand, stroke his face.

Every time he opens his eyes he smiles. He says he’s filled with joy. He loves me and our daughter so much. He says he’s so grateful for how I take care of him, he feels touched only by love and comfort. He tells me I’m wonderful, special, the best person he’s ever known. I sit on the floor so I can put my head on the bed and he can stroke my hair.

I am both undone, and remade by this process.

@Frikonastick god that sounds so bloody hard but so lovely that he can still communicate with you (((hugs)) xx

@Frikonastick that sounds both terrible and beautiful.

My DH used to say the same things. I take comfort from replaying it in my head but I do wish I'd recorded it.

@Frikonastick I started with a whoop-whoop to hear he's still with us and teared up when I read what you're going through. I'm in awe of your love, strength and grace.

@Frikonastick much love to you, the first little one I looked after when I worked in a hospice defied all the odds and hung on long after they said she would. The human body is a defiant thing at times. Sending love and strength your way 🌹

Thinking of you all but especially @Frikonastick and @linspins .

Quick check in for anyone that needs it x

Hi all. Also thinking of those in the thick of it today.
I had a terrible bout of anxiety while booking a holiday earlier. I know this is nothing like what other people are going through right now but I just put it out there that maybe it's normal for these feelings to pop up years later. Any thoughts?

I think so, I think it re-shapes who we are and what we know about life.

Absolutely- my ASD DS passed his driving test this year - I was filled with terror at buying him his first car which was ironic as I was always the 'strong' one in our relationship and pretty much made all the decisions !

Thank you both. It's definitely a legacy of trying to fix everything, which of course isn't possible, as we know.

I could just feel myself getting more and more stressed - and it was all the stuff I didn't know (like, what's my luggage allowance?) leading to me overthinking (I won't be allowed on the plane).

My travel agent (who's also my neighbour and really lovely) has been very reassuring.
I've been meaning to invest in some more counselling to find out why I need to make everything perfect to feel safe. I'll look into that this week.

he has died

i haven’t told anyone

but I needed to tell you

xxx

Frikonastick I’m so very sorry for your loss.

I saw your post entirely by accident this morning so pls forgive a stranger on the internet for commenting.

You gave your dh an incredible gift enabling him to be at home with you for his last days as he wanted to be. You have been incredibly stoic handling all the equipment and meds and the emotional uncertainty on your own. And he obviously felt so very loved in your care. 💐