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

Aww all sounds rubbish, I'm still here hand holding and cheering on from the sides xx

I don't know who is still around.

Dh is sick(er) than normal, awaiting scan results.

I'm going to be totally selfish for a minute and ask how do you deal with the loneliness of it all? Dh is constantly sleeping, the kids have their own lives and let's be honest, don't want to see nothing but a very sick dad sleeping. I'm just so bloody lonely all the time. I don't really have any friends that are that close that I could call for a natter, dh has and will always be my best friend. 😢

It's not selfish. It is an incredibly lonely place to be. I was in your situation and still am now DH is no longer here. The one place I did find some help was the emotional wellbeing team at the hospice but it isn't the same as having a friend you can call on day or night, or a family member. I simply don't have an answer but I do understand (which is probably about as much use as a chocolate fireguard)

It is bloody lonely. After having a paddy one Saturday night when ALL my friends seemed to be out and I was in I decided enough was enough. So I invited every single friend to a what's app group and encouraged them all to suggest events and things and regularly post invites out to different things / events etc

Where are you in the country ?

I'm in Birmingham!

It feels so awful to be feeling like this but I really don't have anyone to really talk to iygwim. Makes me sound sad! Dh and I have only ever focused on our family and didn't really need to make time to keep our own friendship groups. We have friends that we see together and I know they would feel terrible if they knew how lonely I feel, but wouldn't really know what to say.
My best friend lives in Cornwall and has completely buried her head in the sand since dh was diagnosed, sadly we only see each other when it's for an occasion and never spend time alone.

We have just had a week in Greece and dh slept or was in pain, and has been in bed since we got back. I was even looking at flights to come home early. I know that will be our last holiday and it was shit 😞. I dunno 🤷🏼‍♀️ just feeling it at the minute.

Awww feel free to message me - I'm from Yorkshire and can chat for England ! Xx

You've made me realise how lucky I am in terms of having people who will distract me. It's a different kettle of fish of you want people who understand though.

I'm in the North East, DH is in the hospice but I'm happy to chat also.

Hi loubielou4. How are you feeling now? We've all had these moments and it takes a lot of strength and energy and faith to reach out. I don't think people always get that. They'll say things like: whatever you need and I'm always at the end of a phone ... When what's needed is being invited out for a coffee by someone who just listens. It's not much but here's a virtual cuppa ☕and an unmumsnetty hug

Dh has been taken off treatment. He has a tumour that has broken through the abdomen wall and is now visible on the outside.

We are awaiting McMillan and the palliative care team to contact us. So he now officially end of life care. I'm numb which is probably a good thing right now, the relentless telephone calls and breaking bad news would be more difficult if I was feeling anything. They haven't (can't) give us a timeframe, selfishly I'm hoping it's quick for all of us. Dh is petrified and I can't bear the thought of waiting to die, it must be horrific.

I have so many things to get done but no idea where to start.

Oh @loubieloo4 , I'm sorry to hear this. DH is supposed to be in his last few days but doesn't seem to be going anywhere quickly. However, he is comfortable and really well cared for, if that is any reassurance.

I would ignore your list. Tell a few key people and then hunker down. The rest can wait.

Big hugs

Absolutely the rest can wait, my DH was in a coma for the last few days which was hard as we were all in limbo, darent move 'just in case' but he was pain free which was all that mattered.

I've pm'd my number if you want to chat @loubieloo4. @PlantPhoenix if you want to chat please message me

Where can I rent a wheelchair from does anyone know? We obviously don't know how long it will be needed but don't want dh to be stuck indoors until the end.

I am so sorry @loubieloo4 we got one from the OT, they delivered it really quickly. If not, the Red Cross often do wheelchair hire.

We also got one from the OT connected to our palliative team. The wheels weren't very big so it was tricky to manoeuvre but it did get him out

We posted on our local Facebook page and someone loaned us one, though DH hated being in it, he used it more as a walker.

I've ordered one from motability it should arrive on Tuesday (fucking extra bank holiday)

Hi, just to let you know that DH died on Monday night. DD1 and I were there and it was incredibly peaceful ♥️

@loubieloo4 did you get the mobility scooter? I hope it has been helpful.

@PlantPhoenix sorry to hear this, glad it was peaceful - take care x

@PlantPhoenix hugs for you and your loved ones. Peaceful sounds perfect.

His wheelchair arrived yesterday, not been out yet but seems really easy to push and folds up perfectly to fit in our car.

A very personal question (feel free to skim past) did those of you whose DH's have passed away have them at home or a hospice? Dh at the beginning thought he would prefer a hospice but is now saying he wants to stay at home as he only wants me there without the worry of strangers (nursing staff) walking in and out, and our children in the house but not actually with him if that makes sense! I'm fine and more than happy to look after him until the end but I worry that the children, although older might struggle with it.

DH chose early on to go to the hospice and discussed it with his palliative care team and me. When it came to him going to the hospice, he was confused and had memory loss and was insistent he went home. He was too confused for me to cope so we stuck with what he'd said when he understood.

For us, it was the right choice. He needed so much care in the end that I just wouldn't have been able to look after him, and the children and me no matter what the care package was. And the hospice staff were so lovely with him, they put me and the kids at ease, helped us arrange family nights. I'm actually missing them, it came to feel like a second home. But one where I could just focus on being with him, not caring for him. I often just snoozed on the recliner next to him while he was asleep. At the end, they left us with and didn't come in at all but it was quite a short period.

I think it's a very personal decision. I'm happy to answer any more questions about it if it helps.

DH died at home, we turned our lounge into his room at the end. We had carers and support from Marie Curie but it was limited due to covid. It was just me and him when he died, the kids were in bed.

We did the at home too, his hospital bed was in the room so we watched telly and chatted to him whilst he slept (was in a coma for 3 days)

Tbh it actually really helped DS as he could see there was no coming back. He'd had a month in the hospice just before and wanted to be at home. When we got him hope he was already in the coma but it's what he wanted. We had carers who where supposed to come in 3 times a day (bad snow so couldn't actually get) Marie Curie where requested but couldn't help. The district nurse came daily to sort out the syringe driver.

PlantPhoenix I'm so sorry for your loss.

Loubielou4 DH wanted to die at home if possible, second choice was hospice and absolutely not in hospital.

In the end, he was in a lot of pain and the hospice had all the good stuff right there. The downside was that I was split between being there with him and making sure the teens at home were coping. I still have flashbacks.

There are no easy answers. I think when it comes down to it, it helps to plan ahead but it's perfectly understandable to make a different choice if it needs must..

The one thing I struggle with after DH's death at home was the time it took for the nurses to get to us. We are fairly rural, DH went downhill quite rapidly on the Saturday and needed his syringe driver drugs increased that evening, it took 90 minutes for nurses to get to us as the team were at a house the other side of the county, this meant DH was agitated for longer than he would've been had he been in the hospice but once they came and got him settled, he was really settled and I am glad he got be at home.

Is anyone from the thread still around? @Willowkins @bloodywhitecat @loubieloo4 @PlantPhoenix DP has terminal cancer and I’m struggling, have friends to talk to but feeling like no one understands unless they’ve been through this awful situation.Name changed as DP might know username.