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Original poster

Still the storm

997 replies

Willowkins · 17/06/2020 22:00

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

OP posts:
Thread gallery
10
Frikonastick · 19/12/2021 23:23

No, not cruel, I understand the impulse. DH has just had 4 days of being an utter misery, but has himself pulled out of it and is being easier to be around without me having to say anything. It’s how he is coping at the moment. I just cry in the car a lot.

notapizzaeater · 01/01/2022 00:14

Happy new year all, hold them close xx

Original poster
Willowkins · 02/01/2022 00:42

Happy New Year notapizzaeater and everyone x

OP posts:
Frikonastick · 06/02/2022 12:32

I’m lying here in the dark listening to DH vomit seemingly endlessly. I call out to him periodically, I’m here. I love you. I’m sorry.

But what solace is that to him? What solace is that to me?

Not enough.

It is a special type of torture, to be helpless in the face of a loved ones pain.

Original poster
Willowkins · 06/02/2022 20:01

Oh Frik. I'm so sorry. I'm aware you would have been writing that in the middle of the night. I hope you got some sleep. Sometimes just letting someone know that they are loved and not alone and is all you can do.

OP posts:
notapizzaeater · 06/02/2022 23:27

Aww Frik it's torture, all you can do is let him know you're there - it's a shit shit position to be in. Hand holding from afar xx

Spoon27 · 07/02/2022 01:46

Hugs Frik. It's all just awful. But being there and letting him know you're there is all you can do.
I'm here with you from afar.

Frikonastick · 07/02/2022 03:33

Thanks for writing me back, I do find the nights difficult. When my own tiredness just exacerbates everything. I feel sometimes like I’m going a bit mad. And last night was a particularly bad one for DH, just unrelenting.

It’s summer here, and it’s been unseasonably muggy and hot, but it rained all night, that soft insistent straight down, no breath of a wind rain. I got up at 6 with the dogs to more rain and very overcast, but it was good as it was cooler and not as muggy, so I managed to get a couple of hours sleep at about midday here.

Joystir59 · 08/02/2022 23:16

@Frikonastick

I’m lying here in the dark listening to DH vomit seemingly endlessly. I call out to him periodically, I’m here. I love you. I’m sorry.

But what solace is that to him? What solace is that to me?

Not enough.

It is a special type of torture, to be helpless in the face of a loved ones pain.

You are doing your best in an awful situation. That's all you can do, and I know so well that feeling of inadequacy. It's not you that's inadequate, it's the situation that's completely heartbreakingly unreasonable and overwhelming. Sending you so much love. It's 2 years since me and DW were up all night- her vomitting up her important steroids prior to her first Chemo, me on the phone to out of hours cancer triage asking what to do.
Frikonastick · 09/02/2022 03:42

Thanks @Joystir59

They have taken DH off the meds, hoping to get his platelets up and hopefully keep food down for a bit.

Spoon27 · 18/03/2022 03:31

Hello, how is everyone travelling?
How are you and DH going frik? I've been thinking of you.

I haven't really felt like coming here for a while. This group was so supportive when DH was sick, but it was hard to come back here after he died. I think I'm ready now. Also grief sucks and having to work and sort through all the admin, rebuild your life, and parent while grieving really sucks.

A great big well done to everyone here for getting through the day whatever it's holding for you.

Frikonastick · 18/03/2022 04:37

Hi @Spoon27 🙂 we’ve actually had a good 6-7 days in a row, first in four months so I have just been basking in the joy of briefly having my husband back and present and having actual conversations and he’s even been able to sit in the garden and do some light weeding and just be a bit normal. I’ve no idea why this has happened, and it’s unlikely to last, so I’m just enjoying it.

Both sets of parents arrive first week of may to stay for 2 months, so that’s going to be…………a lot.

Thanks for checking in, it’s very kind of you. I think I’m last man standing (or DH is rather!) on the thread?

PlantPhoenix · 21/03/2022 14:53

@Frikonastick I've posted v occasionally on here but was so crazy with work and trying to get my head in a place that could accept stuff that it didn't really happen. Things are a bit calmer now if you'd like some company on here?

DH was first diagnosed with a brain tumour 8 years ago and had surgery to remove it, relapsed 4 years ago and had radio /chemo and now has further (and terminal growth).

notapizzaeater · 21/03/2022 16:47

Sorry not been around been running around like a mad thing

Glad you had a some good days, grab and hold onto them 🥰 @Frikonastick

WeLcone @PlantPhoenix x

Frikonastick · 22/03/2022 19:01

Hi @PlantPhoenix, I wrote a long message yesterday, only to discover I must not have actually pressed post! Yes please, I’m always up for some company 🙂. I totally understand about posting sporadically, the best thing about this thread is that (unlike my RL) I never feel like I have to feel guilty or explain, everyone just gets it. Such a relief.

DHs wonderful period of relative good health has begun to wane, which I expected. Am feeling calm today, which may have something to do with it being my day in the pottery studio, I go ever Wednesday and it’s saving my sanity.

Thanks @notapizzaeater xxx

PlantPhoenix · 22/03/2022 22:05

Waning relative good health is rubbish, isn't it?

DH was taken into hospital last night as his feet started going numb. Unfortunately, we live in a hospital trust area where we always get sent to the local hospital rather than the bigger regional hospital where he gets treated for his brain tumour. It always leads to a frustrating experience where they don't really understand his issues. I'm getting set to do battle tomorrow after what I hope will be a good night's sleep

Frikonastick · 23/03/2022 21:24

@PlantPhoenix, hope you got a decent nights sleep, did you have to do battle? One thing about living in NZ is everything is ona smaller scale, so we never have to go between hospitals, or if we do ( DH also has a heart condition) it’s always the same doctors and nurses and everyone knows everyone iyswim. I don’t think we ever see different doctors now that I think about it, even when on emergency admission.

We have builders in at the moment, striping out and replacing our bathroom from scratch due to a leak 🙄🙄🙄 so I’ve been stripping wallpaper for 5 hours a day this whole week, as the water went through to the passage and of course, can’t just repair one bit of it, it’s allllllll got to come off. Fun times.

PlantPhoenix · 28/03/2022 16:53

@Frikonastick. Sorry, rubbish week. He got out of hospital on Wednesday and went to see his consultant who delayed chemo again. Then Thursday he got more numbness so we had the district nurse out, then the GP followed up Friday. Only to have emergency ambulance on Friday night because the numbness spread even further. He's been in hospital since then. They're trying to get BP under control. However, I've just heard from him and he's had a seizure this afternoon - it feels never ending right now.

Hope your building work is under control.

Frikonastick · 28/03/2022 19:30

I’m sorry @PlantPhoenix, so stressful for you. That never ending feeling, and the wait for the next thing, indescribably difficult. What’s your support like? Also, please don’t apologise, it’s beyond fine to not reply or reply when it suits you xxx

Spoon27 · 31/03/2022 14:01

Hugs plant and frik

PlantPhoenix · 14/04/2022 08:14

How are things @Frikonastick? We had the official no more chemo discussion yesterday as he's just so tired and weak from it. Consultant didn't completely rule out trying it again if there was a massive improvement in DH's strength but as that's unlikely, we're looking at palliative care now.

Spoon27 · 17/04/2022 14:54

Oh plant. Hugs. I hope he gets some feeling of improvement and you can enjoy some time together

Original poster
Willowkins · 26/04/2022 00:29

Hi All. I think of you often. Handholds for whatever you're all going through.
I'm still getting the PTSD when I'm in a situation I can't fix immediately but I'm finding long walks help with the stress (also, saying it's normal to not be able to fix everything).

Not sure if I told you that ex-MIL had died. We weren't close but I helped clear her stuff last week and it was sad because it seems she cared more for these things than her children. It also triggered some flashbacks and I'll need to step back.
Be kind to yourselves.

OP posts:
loubieloo4 · 22/07/2022 20:56

Hi everyone!

Hope everyone is doing as best as they can.

Dh has just finished his 47th round of chemo, he's now having a break as he needs to rest.

I have also been very unwell, which ended with me being in hospital for a week 😢

PlantPhoenix · 22/07/2022 21:25

Sorry to hear that Loubieloo.

DH has been admitted to our local hospice today. He's been going downhill but his short term memory has gone downhill this week and he's been dreadfully confused. No infection and doubling his steroids didn't work. It's been really hard to manage.