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

Families can be shite ! (Hugs)

@PlantPhoenix you know, that’s a very good question. I think I am willing to go, mostly because I just don’t think I can carry Christmas by myself. I’m finding it so hard to be cheerful and I guess I want to sort of hand the bringing of the joy over to someone else?

it’s been a very long time for us. 5 years since his first diagnosis, 2 years of remission and 3 years of just medical crisis after crisis. I don’t know how we are still carrying on.I’m worn down to just a nub of a human. A hollow nub.

But, but but but, he is still with me. I can’t complain. I’m not complaining. I am grateful I really am.

You are not complaining, what you are living is hell on earth. It is relentless and exhausting and cruel and it is hard to truly understand unless you have lived through similar.

@bloodywhitecat is absolutely right. Any of us who've been through similar would not judge and will stand with you in solidarity. We were long haul too, 8 years from finding the first brain tumour, and I'm finding that there is peace in amongst the horrible grief. Peace from the what if? What next? train of horrors which has been your normal for so long.

I understand the need for help to carry Christmas too.

Thank you for saying that, both of you, it is so helpful to be understood.

Hi all. Sending big hugs to those still navigating the journey and those trying to find peace on the other side.

I posted at the end of October about DH's stage 4 spinal cancer, then disappeared. This is because the week after finding out about the cancer, his spine fractured while he was walking the dogs. Three weeks in hospital ensued, trying to get the pain under control and a back brace for a little mobility.

He's back home now, but drugged up to the eyeballs to manage the pain. He can shuffle about at home, and go on very short strolls with the dog if wearing his brace, but that's it. No driving, can barely bend, still in tons of pain. We've had the first couple of meetings with the oncologist and he keeps saying how urgent it is to start treatment. Hopefully the tablets will start next week and he'll also be having monthly injections. Radiotherapy being set up to start asap too.

I'm still trying to work full time and it's incredibly hard to do that and then go home to do everything there. DH is quite demanding and I don't think he realises the pressure I'm under. If he gets much worse I may have to give up work as I don't know how I'll cope otherwise.

Dh doesn't seem to realise his cancer is possibly containable, but not curable. He asked the doctor how many cycles of the drug he'll have to take (3wks on, 1wk off) and the doc said "for as long as it's working". I still don't think he got it, and he has a 'goal' of getting back on his motorbike in February! The bike is massive and extremely heavy, so that's not going to happen. He's already had to give up his golf and once they've taken all his enjoyment away I'm afraid he may just give up. He's not the type to want to be immobile.

Standing alongside the rest of you as we lead up to Christmas, with the relentless pressure that brings too xx

@WhenDovesFly what an awful situation. Is there any chance you could go off sick in the short term to help you figure out what to do about work? My DH never really took onboard what his diagnosis meant and, in some ways, I think it helped him to deal with it. Are you getting some support from somewhere (for you)?

@WhenDovesFly I can second @bloodywhitecat , my DH still says things like ‘next month when I’m better’. I completely understand when you say he doesn’t understand the pressure you are under, I too worked full time until a year ago when I just couldn’t cope anymore. It has made things infinitely easier in many ways, but also much harder in others. There really isn’t a better way to do any of it, just what works at the time. And it’s totally ok for that to change all the time too. I had to get my head around that, I would make a plan and it would work for a while and then I would have to rejig everything and I felt like I had failed in not setting things up ‘right’ the first time! Took me ages to work out that this was just how it was going to be, that there was no fixed future anymore.

sending you strength xxx

@bloodywhitecat and @Frikonastick , thank you for your responses and kind words.

Sadly I can't go sick from work as I wouldn't get paid. They're being good and letting me attend some appointments with him, but as a company they don't pay sick leave (even with a certificate). I know...I was pretty shocked about that too!

For now I'm just having to deal with it as best I can. I have two DDs of 21 and 23 who have fortunately stepped up and are helping as much as they can, which provides some relief, and I have a few colleagues at work who are always asking how things are, and whether there's anything I need. It's nice to know some people care. We're pretty much at the start of this particular journey (his third lot of cancer in four years) with treatment about to begin. I'm sure it will be a rocky road to travel, but like you guys and all other carers, we just get on with it don't we, and somehow cope with the shitshow life has thrown us xx

Hope everyone has as good as xmas as you can.

Hi. The Wfamily don't really do Christmas anymore. It was really MrW's thing - cooking the turkey with all the trimmings, church, family traditions - that was all him. So we're in a hotel in Bulgaria, making new memories - just to prove there is life and healing and hope after the storm but it takes time. Here's wishing you all a peaceful 2023.

We've got a few new traditions, we got a real tree for the first time last year and again this year (though I misjudged the size and it wouldn't be out of place in Selfridges central display !)

DH has always been very big on presents and has unfailingly for every birthday, Christmas, anniversary, Mother’s Day, valentines and sometimes just random days of the year, given thoughtful, perfect, wonderful gifts. Which has always been even more special because I’m one of those people who can never tell you anything they want! I never know I wanted or needed it until I unwrap it.

This Christmas is the first time he has been unable to get me anything. Not just the going to the shops, but the thought process, you know?

So I bought myself some perfume from him and wrapped it and put it under the tree. It felt so strange.

And then, on Christmas morning, early after I let the dogs out, he handed me a letter instead. He obviously really laboured over it, and writing is his least favourite thing to do ever, and it was so unexpected.

And for that shining moment, everything was ok again. Everything felt the way it should. As though the world tilted back on its axis, the train regained the tracks, things that were out of tune hummed back into harmony.

I am going to try very hard to hold onto that feeling.

Merry Xmas everyone, wishing you all joy and light xxx

I can imagine how treasured that letter will be @Frikonastick and the tree made me laugh @notapizzaeater I hope you enjoy your time away @Willowkins

It has just hit me, again, that he is never coming home and I miss him so much. Today hasn't been so bad it's just this evening that it's really hit home again. He was such a Christmas bod, last Christmas was hard and lonely watching him slowly fade but this Christmas? It's a different kind of hard and lonely.

Peace and love to you all.

Aww that's beautiful @Frikonastick

It's bloody hard @bloodywhitecat we always had busy christmas days with all the family. Today it's been just me and DS and a friend and her DS for lunch, she's now gone home and DS has buggered off upstairs watching some crap on YouTube ! I miss DH plus i miss people and days like today bring it all back

If anyone is still here may I have some good thoughts please?

My lovely husband was diagnosed with Stage 4 prostate cancer with extensive metastases almost two years ago.

He was relatively well for some time but started to go downhill more rapidly following an infection he picked up six weeks ago.

In the last week it's as if he's fallen off a cliff, I can't believe how fast things have changed. After a horrendous 48 hours at home and being unable to contact any help because of Christmas closures, he is thankfully now in our local hospice where he has been placed on end of life care. He has at most a few days and frankly I wish it was less. He isn't having an easy time of it.

I was with him this morning and his adult children are now there. I have to stay home with the dogs tonight as it's NYE and in all the commotion I forgot to start them on their calming medications. But we've already said everything we need to say and I've told him not to keep trying for my sake.

I'm at home alone and everything I see is reminding me of his illness and suffering. The house is full of medical equipment and clothes that are several sizes too big. I'm wandering round in a daze. I don't have any family myself and I've lost touch with most of my friends over the last year as caring for him has been all consuming. Can I have a handhold please?

Hello my lovely, holding your hand. Having those reminders is so hard isn't it, they are all around us hiding in plain sight. I think the friends thing is a common issue sadly.

So sorry @MontyDonsBlueScarf
You have so many mixed and confused/conflicting thoughts at the end. Just a maelstrom of emotions. It really is a hideous time. I hope your dogs are ok x

Here Monty . It’s very hard with friends. They move on and also don’t know what to say so say nothing. 💐💐💐

Thank you all, it makes such a difference to have people who understand.

Sending you love @MontyDonsBlueScarf, life is so difficult, I’m struggling too in a similar situation x

A very sincere shoulder bump in solidarity @MontyDonsBlueScarf

Hand hold from here.

My DH spent Xmas and New Year in a hospice before getting home for the last few days. The decline was very very fast which was a blessing as DH would have hated being in that state.

He passed away this morning while the nursing staff were doing their handover. In some ways I'm glad, he tried so hard for so long and he was tired and scared.

I seem to have a terrifyingly long list of Things That Must Be Done and I'm finding it a challenge to make myself as much as a cup of tea. But they can wait.

Hugs and thanks to everyone.

Hey MontyDonsBlueScarf you're not alone - we're here and some of us have been where you are. Sending strength to you and your lovely dogs.