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

How is everyone doing this week? We had a chilled out weekend which was nice.

Dh slept most of Thursday and then we had to go and get him disconnected. Slept a fair bit over the weekend but perked up enough to go to work for a few hours today!

We're doing ok here. DH back at work this week so distracting him. (He works from home) He's got hugely enlarged lumps on his collar bone area both sides which he's not noticed. Pallative call today but they waiting now for results of brain mri due on Sunday. His normal aches and pains are coming back as we reduce the steroids so his morphine use is going up. Also announced on pallative call he's got pains in the areas he had the radiotherapy for bone mets which he's not told me !

Our DS is 18 on Saturday so all systems go for this, though he won't be able to come to his 'party' I'm taking 6 assorted ASD/ADHD 17-21 years old Axe throwing Saturday night ! What could possibly go wrong 😂😂😂

Saturday day my family are here concreting and building some decking in the garden which will help DH - he's ticking off all the things that need doing in the next couple of years, you can see the relief as they get done.

How are things with you all?

My DH continues in the hospice, but they are now saying that they think they will discharge him at some point next week. So I am having to rush around finding out about possible nursing homes, and then decide between that and care at home. We did have 7 nights waking care and some daytime care funded via Continuing Health Care, which was due to start the day after he was admitted to the hospice. CHC are now saying that the 7 nights was only ever a temporary measure and they won't offer it again. We can have either 3 waking nights or a live-in carer who can be disturbed a maximum of 2 times a night. Plus intermittent day time carers coming in 3 or 4 times a day in both cases. Or they will fund a nursing home. The only one they will fund in our town is only letting one designated person visit people at end of life (the position will almost certainly get worse if covid worsens again). There is a possibility of another home if they allow me to top-up the payments (by no means certain). It looks like the top-up would be about £500 a week.

I'm going back and forth - care at home seems ramshackle, but I have not been impressed by the staff ratios at either possible home, and I certainly can't tell DH's children and siblings that they can never visit him again. If it is home care we would have to go with the live-in carer, as I can't go back to not sleeping at all.

The hospice are not turfing him out instantly, and they do seem to have got him much more settled on medication that means he sleeps most of the night and is not paranoid. He is less mobile than he was as he has not been out of bed at all.

My DS (20) is notably calmer now we are not doing the caring, but it is mainly because DH's absence lets him block it all out. I really can't decide if it would be better for him if DH was in a nursing home or not. And no-one can give us any idea of a timescale. Almost certainly not weeks, as the hospice would keep him in that case, and probably not 6 months, but anywhere in-between.

DH is probably beyond caring much where he is - he keeps his eyes shut most of the time - but conversations with me do ground him and he remembers things and is very pleased to see me.

Hi everyone. So I had a mole removed 10 days ago (4cm hole in my arm and 16stiches) and the test results are back and it’s melanoma in situ. I have to have another excision were they remove more flesh and then the monitoring for recurrence begins. I haven’t been all that worried about it whole way though, and even at the appointment yesterday was feeling very calm and unworried. Today, well today, not so much calm and unworried. More like slightly sick to my stomach and dreading the next excision. The last one wasn’t exactly a fun time, but the next one will be double that.

I just can’t catch a break

@Frikonastick: I'm so sorry to hear that - it's really shit, and exactly what you don't need now.

I do know lots of people who have had similar-sounding melanomas and been fully cured - but I know that doesn't help with the middle-of-the-night panic. I'm thinking of you.

Hi @Frikonastick- I'm so sorry to hear your news. Come and join us on the support thread for people awaiting their own test results or experiencing a cancer diagnosis themselves. This one is more for families and spouses- although I'm sure posters here are happy to listen too .

Thanks @BitOfFun that’s very kind of you.

I’ve been on this thread for a long time because my DH has incurable kidney cancer, i was unprepared to have my own diagnosis

@SchrodingersKitty thanks yes, I’m hoping for the ‘good’ type but early indications are that it’s the superficial spreading type. Which isn’t great. But, of course no point speculating until results are in

@Frikonastick shit shit shit

Just what you don't need 😭🤯🤯🤯🤯

Ah, I gotcha- as you were! Feel free to poke your head in any time xx

Still popping in from time to time to see how you're getting on. I rejoice with you on the ups and hold on tight for the downs. With hindsight, MrW's last 6 months were all downhill but I kept hoping. It seems so wrong (and much too hard) to give up.

Frik I get how scary that is. Very glad you got it checked out though.

Endless roller-coaster drama here. A few days ago hospice said DH had hit a plateau and his paranoia and mania was controlled by meds so they would be discharging him. Continuing Health Care said they would pay for either a nursing home or live-in care at home. I've been back and forth investigating possibilities. Decided on carer at home and have spent a few days clearing rooms and dealing with piles of dust which has triggered very bad asthma. Was just about to meet with care agency for assessment today.

Then last night the hospice phoned at 10.30 to say DH was worse, with a temperature and chesty cough. He has been coughing increasingly over the week but it has not got to worrying levels until now. The nurse who phoned said it could be an end-of-life event and that they would call me in in the night if so. I fixed up a friend who would drive me in that case, and discussed with DS if he would want to go in or not. He was very upset and shocked, so clearly hasn't really processed the reality that his dad is going to die soon.

They didn't phone, and when I spoke to them this morning he sounded much the same. I'm waiting for a call back once the doctor has seen him. I have bags packed in case I do need to move into the hospice with him.

They are not planning to check for Covid as they think it is very unlikely given all the PPE everyone has been wearing in his room, and the test would be distressing. I am a bit anxious about the prospect of sleeping in there with him if there is a chance that it is Covid - I am pretty sure I had it already (lasted at least 40 days), but I have weak lungs and asthma, and am very concerned about leaving DS with no parents at all. But clearly I will need to be with him if this is the end.

It's never bloody ending - hope he settles down. You don't know if you're doing right or wrong. Can your son stay at the hospice too ?

We had DH at GP's yesterday. His fingers are locking and spasming all the time at the min, he's in tears trying to 'unlock' them. They've done urgent bloods today to check calcium levels and are speaking to oncology. Adding to this his leg gave way yesterday coming downstairs - luckily he was holding onto the handrail and only fell two steps. Thought he was off the steroids this morning but he's still got a week to go 😭. Hoping he doesn't loose anymore strength in his legs.

@Frikonastick so sorry you have extra worries, I had a very small bcc (basal cell carcinoma) removed from my eyelid a few years ago. Bit of a pain but very quick and easy treatment.

@SchrodingersKitty sending lots of love and hugs for you all.

@notapizzaeater sounds bloody painful 😖

@Willowkins lovely of you to pop in.

We are plodding on, dh had another round of chemo today. Seems to have gone ok so far.

DH had a massive heart attack last night and was air lifted to the closest acute care centre. Which is unfortunately a different Coty a couple of hours away. I have been awake for 24 hours now. But he is now stable.

@Frikonastick omg, not having much luck at min 😭. He's in the best place it's just so fucking hard !

@Frikonastick: I'm so sorry to hear that. Wishing you the strength you need.

My DH is worse: he was unresponsive when they did personal care this morning. Still no clarity on whether or not it could be covid. I feel terribly guilty, but I really don't think i can take the risk of living in his room, sleeping and eating and washing for the duration. There doesn't seem any way of maintaining adequate ppe. DS is distraught at the prospect of me doing it - he is obviously worried about losing both parents.

My step-son has really stepped up and has gone to be with him instead. He is in his early 40s, no lung issues and very fit so is much less at risk than I am. He can then let the rest of us talk to DH over phone and video calls if he rouses.

I feel incredibly torn but the need to be healthy for DS feels paramount at the moment.

DH is still at end of life in the hospice. He has been deeply asleep / unconscious since Tuesday night. He is on meds to keep him calm and pain-free, but not to sedate him. He has opened his eyes a couple of times but that is all.

I am feeling very guilty about not being there with him, but I am seeing him on video phone several times a day and reading to him. He does not seem at all aware of his surroundings but there is a chance he can hear our voices so we are all (me and his kids) doing this.

It is beginning to hit me that it is really happening now - I think before I was so bound up with the practicalities that it was hard to see the much bigger picture of us losing him forever.

@SchrodingersKitty the guilt, the guilt, the guilt. You know what I realised? You can’t feel guilty if you don’t love someone. You can’t feel guilt if you don’t genuinely want the best for someone. You can’t feel guilt if you arent always thinking of someone else’s interests before your own.

You are enough. You are doing enough. You have had a whole life of loving your husband. You haven’t stopped. If he could, he would tell you this himself.

A very solid hand hold from me x

@Frikonastick @SchrodingersKitty totally totally agree, he knows you love him but you need to take care of you and your DS here. ((Hugs)) x

DH died this morning, about midday. He had been more and more deeply asleep, and he just took his final breath. His eldest son was with him.

I am still in shock, I think. I've been holding it together telling people, but lost it when I phoned to speak to the hospice and got a rather brusque nurse firing out the things I need to do now. I still feel very judged by them for not having been the one staying with him this last week, but that may be my guilt rather than their attitude.

DS is reasonably ok, but I expect it will hit him soon. It has all been so long drawn out (illness first diagnosed in Feb 2017), which makes it easier in some ways, but also means we are just so drained.

I hope that some distance from the very difficult last few months will allow us to remember DH as he was before - kind and clever and witty and caring. Of course, that's when the loss will really hit us too.

@SchrodingersKitty ((hugs)) don't have any words that will make it better. Take comfort in he fell asleep.

You have nothing, nothing at all to feel guilty about.

@SchrodingersKitty I am so sorry 😢 please don't feel guilty, you have nothing at all to feel guilty about. It sounds like it was very peaceful at the end which is all we can hope for.

Keep posting, we are all here for you

Please do try and remember to look after yourself and rest x

@loubieloo4 @notapizzaeater: thank you both so much.

I've been reasonably ok much of the day. I haven't tried to do anything other than let people know. A friend's daughter picked up DH's bag of belongings from the hospice. I opened it up and saw his glasses and was hit with a wave of anxiety - my instant thought was that he would need them. Then I saw his warm dressing gown was packed rather than on him and worried that he'd be cold. Ridiculous. And the last thing that he would have taken seriously - he was very sure that his identity did not reside in his physical body. But so visceral.

Lots of colleagues (we met at work, though DH retired a few years ago) are writing lovely memories of him on the department email which is helping me remember how he was before the illness and that he affected so many more people than just our little family circle.

DS is ok - I'm worried that he might end up repressing too much, but for the moment I think it's whatever gets us through.

Much love to you, SchrodingersKitty .

@SchrodingersKitty I am so very sorry to hear this - sending you much love and strength