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

You're a lovely friend chasingmytail4. I hope you're coping yourself. I agree with what PP have said plus you can ask her to tell you what she needs and then do that.

For the benefit of anyone else wondering what to say, I need to point out that there's a kind of terminal illness bingo - the range of things people say to try to make things better but which don't. Even if it comes from a good place, these sorts of comments can make it worse. I can think of a few examples:

• I'm sure all this is happening for a reason;
• some good will come out of this;
• there's new research;
• you need to go vegan;
• my cousin/friend/cat had cancer and they're fine.;
• you need to stay positive. Even worse are the people who cross the road to avoid having to say anything at all. The people who helped MrW the most were those friends who would come for a short visit and just sit and listen.

Oh dear @chasingmytail4 yep tell her you love her and exactly what you said that you'll do anything you can to help (maybe there's something in particular you think could help that you'd like to offer to do).
I know it doesn't feel like enough. But any message of love and support will be enough. Connection is what really matters

DH came home today!!!
Didn't really believe it would happen until today. But he's here. And doing well.

Also yes people came and just talked to him, but whether they were just not very good at it or he just really didn't want to talk... they just annoyed him and he kept telling them to leave.

Thank you all for your helpful comments, particularly @Willowkins, knowing what not to say is so helpful too. Everything I say feels inadequate, but we have had a little chat today and I'm hoping she knows now that I will be here to do everything I can for her, either practically or emotionally. I often send her little texts and have made it clear that no response is necessary if she's not in the mood. I'm treading a fine line between keeping in touch and not imposing when she doesn't want company.

@Spoon27 so happy for you that your husband is home.

Unhelpful comment bingo is my favourite game.

My most rage inducing ones lately are

• you’re stronger than you know - or any variation on strength being some sort of magical shield against misery and pain and distress. It’s such a toxic fucking thing.

• any sentence starting with ‘at least’ - at least your DH can still talk / walk whatever. At least you still have a job. At least you own your house (so we can borrow against it to pay for meds?!! So lucky!!!) Or my favourite so far, at least it’s not your child that’s sick

• just concentrate on making memories - this is the worst one. What the fuck exactly about this would ANYONE in their right godamn mind want to remember?!?! I blame all the movies ever that have those montage things before someone dies.

Yay great news Spoon so happy you've got him back.

Thanks Frik I'd forgotten those. My worst one was: You'll find someone else. Like, if my washing machine broke down yes I'd replace it but not MrW not ever

Oh yes the bingo !

You're young, time to have another relationship

You will be comfortable for life now

Someone will love you like DH did

Think of the holidays you can go on now

It was lucky Covid came along because you where all together for the last few months

Are you dating yet ?

It's part of gods plan (not religious at all !)

Only the good die young (WTAF ?)

At least you had time to say goodbyes, those people that have had Covid didn't get that.

Aaarrrggghhhhh .......

Great news @Spoon27!! So very happy for you to have DH home xx

Ah yes, the 'I can't imagine what it's like' comment - NO YOU FUCKING CANT...

Humph.

Oh and, ‘don’t forget to take care of yourself - usually with concerned face and gentle shoulder pat. Thanks Susan. Because you sure as fuck aren’t going to are you. So no worries will just chuck ‘looking after myself’ onto the list too shall I?!?

Oh my. I'm horrified at some of these comments and glad I haven't encountered them yet.
But gosh am I sick of the 'you're so strong/incredible/inspiring'. This is definitely not something to look up to.
And the 'are you looking after yourself?' comments.
I'm also a tad sick of the offers to have intimate 'let it all out' walks with friends/colleagues I'm not close with.
Oh and all the people wishing/praying for a full and speedy recovery. Even when they know the situation. It makes me feel bad that I'm disabusing them of their hope or guilty for not being as hopeful.
It's particularly annoying when the unrealistic positivity comes from a nurse or other medical person showing they haven't really read the notes. Just had a home visit nurse who kept talking about how they could probably reverse the colostomy after treatment. Um no, they can't and exactly what after treatment are you talking about cause the drs told us after treatment would be pretty short-lived.

I never knew what to say when people ask me how I am in a specially pointed loaded sort of way.

@Spoon27 you’ve actually made me laugh about the intimate walks 😁 yes! My way of managing that was to say yes to the walk and then drone on about everything except what they wanted to hear about. Works like a charm.

@Joystir59 that makes me especially angry when people do it in front of my daughter. Like what do they want me to say?!

We play cancer bingo if we bump into people we haven't seen for awhile! Dh loves to also say, when people say I hope you get better soon etc.. "well I won't know if I Will be feeling better when I'm dead really will I" que shocked faces and oh no you must think positively 😂

The ones that really boil my blood are 'have you tried some alternative method, cannabis, green smoothie diets, front spawn on the third Sunday of never but only when it sparkles or some shit! Yes Karen broccoli is going to cure him of his cancer that millions of drs around the world can't 😡

Yes to all the awkward things people say! I'm out the other side now (one year anniversary of Dh's death in a few days). I'm finding that the 'awkwardness' seems to have shifted to me. I continue to talk about DH as I always did - his life, his opinions, etc - but there is increasingly a marked silence when I do so, even from my closest, most supportive friends and family (on my side), as if they don't expect him ever to be mentioned again and they don't know how to talk about him. I find this really strange.

I always felt I had to explain DH had non smokers lung cancer, people would say 'I didn't know he smoked' I was sick of explaining, if you have lungs you can get lung cancer same as if you have breasts you can get breast cancer !

I had lots of links shared with me about vegan juicing diets etc, tbh I think DH would have chosen to go earlier rather than eat/drink that all the time ! I was just grateful he ate anything so he had all his favourite foods at every meal. The hospice quickly realised if all else failed he'd drink Heinz tomato soup, so much so they got extra supplies In. The chef must have been mortified, he was ex Harvey Nicks chef 👩‍🍳

@SchrodingersKitty
Yes to all the awkward things people say! I'm out the other side now (one year anniversary of Dh's death in a few days). I'm finding that the 'awkwardness' seems to have shifted to me. I continue to talk about DH as I always did - his life, his opinions, etc - but there is increasingly a marked silence when I do so, even from my closest, most supportive friends and family (on my side), as if they don't expect him ever to be mentioned again and they don't know how to talk about him. I find this really strange
This rings very true for me too. I'm just over a year of living without Annita, and I talk about her all the time- I'd like to talk about her much more tbh! I have one friend who lost her husband 4 years ago who really gets it, but most others try to be flippant or don't say much. For me I'm still in shock, it's still raw, it's still unbelievable even though I'm moving forward with my life. There are two of me, one weeping at her side, not accepting her imminent death, the other glimpsing optimism about my own ongoing life.

@Joystir59: Yes, I'm still I'm shock too. I keep going with things and feel reasonably content, but I don't think I really believe it all happened. I often think I must come over as quite mad, but that people are too polite to say so! Our DS (21) finally feels ready to have grief therapy, and has found it fairly helpful. I had a couple of bouts early on, but I'm not sure it did much for me.

Hello. Reading through all your posts is heart-wrenching. I'm so sorry for what you're all going though. But the empathy and support here is wonderful to witness.

One question. My beloved husband of has just been diagnosed with a progressive lung disease for which there is no treatment, and no cure. Not cancer. It is terminal but the timescale is uncertain. We've been told maybe 3 years. There is no hope of recovery, just slow deterioration.

Do I belong on this thread? Thank you for your time.

That sounds awful thisgardenlife. I don't think it's the disease which binds us (and anyway cancer includes lots of different diseases) but rather the shared experience of caring for someone we love and knowing we're going to lose them and maybe losing a little bit of ourselves in the process. If that sounds like you, then yes I think you belong.

Well, it’s been a pretty horrendous few weeks. Oncologist confirmed on Tuesday that DH has 6-8 months. We had to go into the office and clear all his things out. It was a very very bad day.

@thisgardenlife, you are definitely among friends here x

Oh Frik I'm so sorry you had to go through that. Clearing out his office seems so final.

I'm so sorry to hear that, Frik. Clearing his office must have been very hard.

@thisgardenlife: this group got me through some very hard days. There are times when you just need to talk to other people who know exactly what you are going through. I'm sure you will find it very supportive.

@Frikonastick ((gentle hugs)) that's shit ! Make sure you look after you too.

@thisgardenlife welcome to the club we don't want to be in but we are ! It's good to 'talk' to people who 'get' it.

How did you all cope with work? I took a three month leave of absence to cope, but I start back next week. I am feeling extremely stressed about missing that time with DH. Also, my job is quite high powered, not like ceo or anything, but high pressure and stress. I’m actually scared I can’t do it at all.

@Frikonastick I didn't, my bosses where great and sent me home with the instruction not to come back and make the most of the time.