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

podcasts.apple.com/au/podcast/goodbye-to-all-this/id1534174272?i=1000494395413

Thanks @chinchin77

@Frikonastick bitter sweet, great it's not spread, crap it's doubled in size.

Just took DH to the local surgery for bloods ready for our results tomorrow - he had to walk 150 yds on flat, he needed 5 mins to get his breathing under control once he got in the car 😢

Just back - he’s a load more fluid on his lung but still not enough in one place to drain - can’t see the tumours because of the fluid - will be able to see how they’re growing on CT in Dec ..... still talking about months

Hi All

Dropping back in from the other side of all this to wish you all so much strength.

It's now about a month and a half since my DH died. Grief has not really been as I expected - I'm actually coping fine, but it may be because I am still pretty numb. I think its also because we had so long to prepare ourselves, and because the end was mercifully calm after the awful final mental confusion and paranoia. I do keep getting flashbacks to the worst stages of his illness. I thought I would be overwhelmed by existential horror at the fact of his death, but it hasn't been like that at all. I have been pretty ill, though, with all sorts of random physical symptoms, and also sleeping more heavily than ever in my life - DS is the same. All common reactions, apparently.

But we're OK. There's a certain calm when the worst has happened and you are still standing.

I'm thinking of you all.

Hi
Can I join? Neither spouse nor partner but I am supporting my sister because she has learning disabilities which means she needs someone to speak for her. Stage 4 breast cancer diagnosed two weeks ago. No treatment or investigations planned. We are just managing her quality of life. However her care home went into lockdown today with 2 positive cases. No idea what this means for me as her advocate.
My dad who I am a carer for having CT tomorrow because he has a ? Lung cancer appearance on recent chest X-ray.
Mum died 5 months ago after years of caring for her. Because of Covid we didn’t spend time with her before she died. I can’t bear to think of her alone wondering where we were.
I’m done in.

@TooOldforBouncyCastles that sounds really hard supporting everyone, hope you have some RL support too.

We're ticking over, DH sleeps 14 hours at night gets up, sits on the settee watching telly and dozing on and off till bedtime. Only moves to go to loo and maybe make 1 drink during the day. Anything else and he's exhausted. We got DS to go up into the loft for the first time this week but he managed to put the 'hatch' back and jammed it in the ladder so DH had to go up the ladder to sort, he was gasping for breath and had to sit for 10 mins on his bed with the oxygen 😭

I'm frantically wrapping Xmas presents so I can sort out our dining room (Xmas present and dumping ground storage) we've a funny semi circle window which currently hasn't blinds or anything in - need to sort something out as if DH needs a hospital bed that's where he will go. Pallative are ringing weekly at the min and have looked at his hospital visit and checked I'd got all of his end of life meds, DNR etc went through everyone to make sure we had it. I'm wondering if they know something we don't ???

@SchrodingersKitty really good to hear from you, glad you doing 'OK' the 'after' petrifies me tbh though I feel I've been grieving for the last year IYSWIM.

Had another 'helpful' person tell me this week 'It will be ok, I'm young and pretty so I will find someone else' ..... Errr I know people just say stupid things but if I wanted to find Someone else I've had 28 married years to do it ! Under normal circumstances I'd have laughed about it with DH 😭

@notapizzaeater

I really can't let myself think about "after" it would probably make me crack. We still get token stay strong messages and it drives me nuts.

@TooOldforBouncyCastles welcome, it's hard being the partner/ caregiver, sending hugs.

@SchrodingersKitty thank you for popping in.

So dd (15) has decided to shave her head in December to raise some money for DH's chemo ward. Her hair is beautiful straight blonde and down to her bum. I think it's the only way she feels like she is doing something. Well anyway I set up a GoFundMe account and within half an hour of posting we had over £500 of donations 😱

@SchrodingersKitty I felt similarly actually coping fine almost so much so that I felt ashamed at my lack of immense grief (after mums death a few months ago). I think the long and traumatic illness beforehand meant I had done a lot of grieving however a delayed sadness crept up on me and I found myself very tearful and emotionally wobbly more recently (just in time for sisters bombshell news). I know it’s a cliche be kind to yourself but I have been consciously doing so and accepting the constant tears

@notapizzaeater the practicalities sound really hard. I feel a numbing exhaustion when I have to tackle stuff like this. People say the most bizarre and insulting things at times like this. I find it hard to forgive some comments.

@loubieloo4 is it allowed to share links on MN? I would send some money. I raised a lot after mums death and the number of donations made me feel supported and like I’d done something. She sounds like an amazing daughter.

Spoke to GP today about pain relief. My DSis cannot express pain and I fear her reaching her death with absolutely no pain management other than paracetamol. I had a good conversation about it and felt better for doing so. They’ve added Naproxen. No idea what’s normal at her stage. Bone and liver mets must cause some pain. She is refusing food, drink and pills so may need a syringe driver at some point just for pain relief. She has one at the moment just for epilepsy meds because otherwise she’d start one big fatal fit. I feel fairly desperate about the idea of her suffering

They’ve said we are allowed to visit regardless of the virus in the home because she’s end of life. I don’t know just how end of life she is. I know this is a regular comment but that uncertainty is hard to reconcile. My mum was EOL predicted to be days....for 6 months.

@TooOldforBouncyCastles I hope you are able to keep on top of dsis pain, if not ask to speak to the palliative are team.

I didn't want to put the link up just in case it wasn't allowed and don't want people to think I'm expecting them to donate. I'm not sure of the rules?

@TooOldforBouncyCastles hope they've prescribed something to help her tummy - lansoprazole is normal. Are pallative involved ? They can offer 'harder' drugs .....

Not sure if you can share links but feel free to PM it 🤫

Lansoprazole is prescribed yes. The plan is to consider hospice as an option to get control if the meds fail. She looked tired and unwell when I visited tonight. I did get pills into her but not much food. I think my resilience to caring for someone who is unable to let you know what they need is low because I’ve already done it with mum until her death a few months ago.

I wish she could say how she is feeling. We lifted her off the bed to a standing position and into a chair. I wonder how much problem the bony mets are.

@loubieloo4 stick the link up...even if taken down we’ll hopefully see before it’s removed

@TooOldforBouncyCastles most hospices are amazing, I would definitely look at that as an option. I'm glad you are still getting to see her. Hugs

For those asking about our GoFundMe page, I have message the site team to ask about the rules as I would hate to be banned. This thread and my own have given me so much support. Good news on the GoFundMe though, in 24hrs we had over £1500 donations 😱.

Then I received an email from the GoFundMe PR team asking if they could help us raise some more money through the press, tv and radio eeekk apparently our cause caught there attention and they want to help. Only a very small percentage of people get given the help. So now I have a PR assistant 😂 she loved the way I wrote by all accounts.

Sometimes humans are bloody amazing, which makes up for the shitty ones.

That’s fantastic news and really affirming of support and love for your family

Hi, can I join please?
My DH has a rare form of thyroid cancer. We've "lived with it" for nearly 4 years now and he's been through multiple operations and radiotherapy. Maybe we'd got too complacent, but last week I took him to hospital because he had gone yellow.
He's got a mass in his pancreas, 4 dodgy looking bits in his liver and a rogue lymph node between his lungs.
To be honest, if it's the metastacized thyroid cancer that's come back then I do feel we kind of know what we're dealing with. But if it's pancreatic cancer I feel kind of hopeless. And frightened. So so frightened.

He's having an ERCP on Saturday if today's covid test is clear. He'll have a stent put in to hopefully clear his jaundice. Then they'll take a biopsy of the "mass" to see what it is.

I think the low grade worry for the last 4 years has now ramped up to mega proportions, and I keep bursting into tears.

It's the uncertainty of what's happening, but with the knowledge that his cancer is incurable so there's the certainty of "knowing" if that makes sense.

I'm just so scared.

Sorry for the essay.

@LookToTreblesGoingTreblesGone welcome. It is bloody scary, I think we all get used to our new normal then something comes along and buggers it up. Fingers crossed.

@loubieloo4 that's amazing, your DD hair looks fab, I'd be crying too 😭. But it always grows back !

@LookToTreblesGoingTreblesGone that is such a stressful time for you. Have you got family support?

@TooOldforBouncyCastles I have a cousin who I'm close to.
We've got a daughter and a son. Our daughter has her own house with her boyfriend; our son is away at uni.
I've realised today that I need a bit of help. I can't support our DD and DS, and my DH, and my MIL if I can't cope, so I contacted my doctor and she's written prescriptions for short term Valium, and Sertraline. She's an amazing GP, and will ring me next Wednesday.

@notapizzaeater you're right. My new normal has gone to be replaced with something else. I thought I had it figured out; I was wrong.

@LookToTreblesGoingTreblesGone I’ve been coping for years caring for mum, kids, work etc. This time I realised something was going to crack and I can’t afford for it to be me because too many others depend on me. The GP gave me a FIT note which allows for flexible working. This means I’m not stressed to the eyeballs by not being at work but nor am I working 40 hrs a week and work don’t lose me completely. Win win.

Even adult children need lots of support

@TooOldforBouncyCastles
I'm so sorry for what you're going through. It sounds like more than one person should have to cope with.

DH and I have our own business, but not now. We're having to stop it because of his illness. We don't think it's feasible to carry on anymore.

I've just had my Sertraline and Valium delivered - too bloody scared to start taking them now

@LookToTreblesGoingTreblesGone actually I’m under no illusions that my experience is much easier than those of you with partners. Both mum and sis had/have primary carers and my caring is only in the space between work and bed. You don’t get away at all and you don’t have a partner looking after you whilst you look after them.

Emotionally I feel huge involvement as sis cannot make decisions or communicate so she needs an advocate. It’s like a child but not a child, not a partner....and I am frightened she won’t get the right care because she isn’t able to speak for herself. I need to see her and be with her to be able to do that. I’m on the thread hoping to get help managing this different relationship.

Her care home has now got positive Covid residents. I’m still going in fortunately because of her EOL status. Dreading her getting it or being stopped. Juggling family dynamics because others are not going in, some by choice, some by vulnerability to Covid and some by circumstances. I think they feel upset by their lack of visiting so I’m trying to be considerate of others individual needs. DH grumpy tonight because I think he finds me going to a Covid home frightening.

Has your DH Covid test come back yet?