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

Thank you so much @Willowkins @Frikonastick @notapizzaeater and @SchrodingersKitty .

The club we don't want to be in is right. In fact it hasn't sunk in yet. I rang his GP today re getting something signed and the letter from the consultant hadn't arrived yet so she didn't know. It all feels surreal.

My DH is devastated and still in shock. But today he said he feels angry at the brutal way we were told the bald facts and not given any leaflets or comforting chat with a nurse or anything.

I don't know what to say to help him. He's not feeling ill exactly but his condition makes him tired and he is just terribly upset mainly about leaving me and our (grown up) children. He's not ready to tell them as he doesn't want to break down in front of them, and wants to somehow tell them without telling them quite how serious (ie terminal) it is.

We will just have to take it day by day I think. Then when he feels ready we will have to explain to them somehow.

So sorry you're all going through this.

@notapizzaeater, how long did you have off ?

@Frikonastick I reduced my hours October, then originally had a month off over December as he had the gamma knife, went back Jan fir a few weeks, told terminal, got sent home, then was home fir all of Corona (was on full pay - worked in education so no way could I go back as shielding DH) work put me on half pay in the Following Dec and he passed in Jan. So I total about 14 months (but if not Corona I might have tried to go back tbh)

Oh hugs @Frikonastick! That's really hard. Both the news and clearing out DH's office.

Welcome @thisgardenlife Sorry you're here, but glad you found this group. It's been incredibly supportive for me so far.
The time around diagnosis is soo hard. A few people told me it was ok to take the time to process and get stronger myself before telling others including the kids and family members, and that permission to take time for me really helped.

Work: I have no idea. I work in academia which is really flexible and basically like working for myself. I took a lot of leave around the diagnosis and initial hospitalisations and now I've gone back to working part time. But I don't know how to do it. I find it really hard to focus and be productive with work. But I feel I need to do some. Especially if things with DH continue on for years we are really going to need my income. But it's practically difficult (as well as emotionally/mentally difficult). There have been crises every couple of weeks. And then even when there aren't, my time is so limited e.g. today I had 2 hours available for work in between kid things and hospital appointments. And with lockdown, I can't go into work so I'm working while with DH which is great in many ways but also hard for the focusing part.

Another case where the uncertainty makes it harder. If I knew that DH only had a few months left, I'd just take full leave including some unpaid leave. But he could continue like this for years (gosh I don't know how we'll all cope, but anyway) and I can't stop working for that long.

Well, I’ve resigned today. In the end it came down to that my main priority is to spend every moment I can with DH until the end. I have a vague idea / plan how we will manage it financially and will just take it as it comes. I am both terrified and relieved. The phone call with my director was an out of body experience.

I quit work (nurse) when dh was diagnosed as stage 4 with 18 months life expectancy. I have gone back every now and then to do a bank shift and during COVID I vaccinated people who were house bound (very low risk for me and dh!) I'm waiting to see if they need me for this third round. If not I will do a few shifts on my own ward (nights to be around in the day for appointments) it's going to be knackering to do 12.5 hrs after so long. But I don't have to commit to any days/nights so can fit it around treatment and dh.

I don't know how anyone could work full time, just the sheer amount of hospital visits crazy and was totally unexpected for us.

If the life insurance eventually pays out once dh passes away, we have planned to have enough put aside for me not to work for a couple of years just in case. Urgh work is the last thing any of us want to think about.

Oh hugs @Frikonastick. Congratulations for making the decision and acting on it. So good to be able to focus on the time with DH.

Gah another case of "it would be really unlikely for that to happen" and then it does. Poor DH got his staples out today but because his ascites have built up and are stretching his belly, once the staples were out his surgical wound split open. Was pretty ghastly to watch. Poor man. Fingers crossed they get on top of it all soon. He's booked in for another ascitic tap in the morning. Hoping it goes well.
It was also a clear reminder for me that I definitely would not want to be a nurse. I keep getting flash backs. The gore was well past my comfort level.
Thanks I needed to vent somewhere.

Oh @Spoon27 that’s bloody awful! I’m sorry you had to see that, nothing prepares you for the ‘medical’ side of things, it can really be hard to manage. Hope your DHs wound is on the mend soon xxx

Thanks frik!

@Spoon27 how is he now ?

@Frikonastick I didn't regret having the time at home with DH. COvid sort of worked well for us as it meant we couldn't go out (which DH would have wanted to do, but it knackered him and took days to get over a trip out so it meant he could ignore how ill he was) we watched lots of box sets x

I'm a nurse @Spoon27 and that's awful for you.

I have a strange question for you all, obviously we are all stressed has anyone had any physical issues with the stress? I hope that makes sense! I have developed some random sort of eczema, on my hands and feet, the huge problem is that it's making my nails fall of my hands 😱 I currently have 4 intact nails and the rest are either on there way out or gone completely. The nails get extremely swollen and very painful then die off. (I don't know if they will grow back as they fallout from the nail bed.
I have all sorts or cream from my gp and some antibiotics as a couple of the nails had pus underneath before they came off. They have worked great on the rash but I have one nail that's driving me mad with pain because of the swelling. The gp thinks it's stress related?

Oh hugs @loubieloo4 that sounds awful. I haven't had any physical stress related issues yet, but I'm still in the early days. But I do have postural orthostatic tachycardia syndrome which I developed as a child and the docs say it could have been stress related or an autoimmune response issue. So I've somewhat been down that path and struggled with the relationship between weird physical ailments and stress before. I found it really hard to reconcile stress as a possible cause. And then to think about what could be done to fix it.

DH is going ok. He's now got a fancy vacuum dressing on his wound and is doing pretty well with that. But we ended up sharing a hospital room with a covid positive patient when they put the dressing on and taught me how to manage it. So now we're in home quarantine. So far testing negative which is good. Gah we'd really like a break.

Loubie absolutely I get physical ailments with stress but yours sounds so much more distressing. I'm so sorry you have this extra thing to deal with.

I get all sorts of weird symptoms (stomach infections, mouth ulcers etc) all of which I don't normally get and completely attribute to stress affecting my immune system. At my worst I was on Sertraline for PTSD. Nowadays If it kicks off, I change my diet to include more wine live yoghurt and Vitamin C.
I don't have any advice just really hoping you find the answer.

My hair has fallen out in massive clumps. I now have bald spots. And my hair has always been very very thick, I don’t mean the strands, but the volume. So its decline is very noticeable which I find pretty distressing to deal with. I have also got oesophagitis, where about 75% of my oesophagous is ulcerated. So I can’t be d down to put on shoes or tie my laces because the acid comes straight down my throut.

Shit day today, my 28th wedding anniversary. Another 'first'. Family don't know what to say.

Hope he's Dancing in the sky .... this always makes me cry 😢

Hugs @notapizzaeater

Aw @notapizzaeater a million hugs xxxx

Hi notapizzaeater that's a really lovely song - the pictures are so poignant.

You've reminded me that it's my anniversary in 2½ weeks - it would have been 24 years - but these days I just blank it out and forget about it. I just can't find it in me to celebrate.
I'm hosting a MacMillan Coffee Morning tomorrow and people think I'm either brave or crazy. I think/hope this is me getting back to my normal self.

First ever post for me but long term lurker. Hope you don't mind me dropping in on your thread. My DH was diagnosed with stage 4 cancer but after progressing on his intial chemotherapy regime has been told there are no more treatment options available so is just waiting to die. He has a rare form of cancer so no idea how long he has left. People have said to me about 'making memories' but it just makes me feel guilty as just making it through the day is tough enough.

Welcome Wobble to the worst club ever. Are there no palliative care options at all?
I don't understand the making memories thing - I think it's more about living for today and not putting things off till tomorrow. We bought a coffee machine and that was just about the extent of our wild ride.

Hi @WobbleBobbleWiTheWeeYins, I too hate the ‘making memories’ bullshit. I blame 50 years of rubbish movie montages where every death is treated as some sort of excuse to do a bunch of things if you had reallllllyyyy wanted to do you bloody would have done already, which completely ignores that in fact, none of that shit matters in the end. And frankly, as you say, just getting through the day is a win.

Dh and I are currently not working as we want to spend as much time together before he dies, and I have lost count of the number of people who have either made suggestions for ‘fun’ days out, or trips away, or expressed surprise that we aren’t taking a class or filling our time with interesting things, and seem most put out that when they ask ‘so what did you do today’ and the response is, we managed a walk!!

How have they missed the part that my DH is terminal?!?!? Not taking some sort of sanctioned break from his life?

It’s very bewildering.

@Willowkins, we got ourselves a meal delivery service for a while and counted that as our wild ride!

Welcome Wobble!

And oh yes, I can't stand the make memories or fill this time with things you love doing together advice. I mean I'd love to but it's kind of difficult by definition given the situation we're in.

Gah I hate the emotional roller coaster. Sometimes I'm fine and sometimes I feel like I can't breathe or stop crying. And I guess it's going to be like this for a long time well after DH dies. Ah well day by day, hour by hour