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Life-limiting illness

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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:
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bloodywhitecat · 22/07/2020 21:16

No op today, they want to do it via endoscope so are giving him Vit K infusions between now and Friday to improve his blood clotting. Scope first thing Friday morning, the surgeon told him he'd be back on the ward in time for breakfast.

We did have good news though, the cough he's developed is the bilirubin making his lungs itch, I was convinced it had spread to his lungs.

Flowers To all those who need them, I have worked in paediatric palliative care and watched my dad go through a very rapid decline with mesothelioma but nothing prepares you for watching your husband/partner/wife go through it.

IWantToBeNynaeve · 22/07/2020 21:58

Can I join in please, I know everyone else is dealing with a partner with cancer but for me it's my mum. I'm just so tired and stressed from it all. She was diagnosed with stage 4 breast cancer back in Feb 2019, it had spread to her bones by the time we found out. At the time we were told she probably only had 3 to 6 mths to live without treatment but she is still with us 18 mths later, the monthly hormone injections brought her tumour marker right down and basically her cancer is on pause. You'd never know that to see her though, she has been getting increasingly weaker by the month and is now almost completely bed bound. She also has Atrial Fibrillation and this absolutely knocks her sideways when she gets it as she's so weak already. There doesn't seem to be any particular medical reason for her severe decline , the doctor thinks its most likely the fact that she also has arthritis and fibromyalgia as well as the AF and cancer plus she's 74. My 79 yr old dad is her primary carer, and then I go there 4 or 5 days a week to help out and do all the housework etc which is difficult as I have my own family and my dh has MS himself. Its so hard seeing my mum so weak and in pain, she used to be such an active involved sociable person , now she has literally no quality of life left. She can't read, watch TV, talk for long, nothing. All she can do is listen to audio books and sleep. And yet the gp says she's in no imminent danger of dying, unless she gets an infection or something it could be months or more, its like the death of a thousand cuts. I know it's awful to say but I'm at the stage where I feel it would be nearly better if she went, at least she would be at peace and no more pain. Plus selfishly I'd have my life back, for the past 18mths my life and my family have basically been on hold. All the emotional burden of her illness, her sadness, anger , fear, severe anxiety etc falls on me because she has no one else to vent it to. I've one sibling who is not interested and is no help at all so I find it incredibly draining. My poor dh has his own issues with MS and I know he keeps them from me as much as he can because he doesn't want to burden me even more (even though I constantly tell him I want him to share his troubles with me). I think its just weighing me down at the moment because my dad has to go into hospital next week for an operation so I have to move in to their house for the week at least to care for both of them . I'll be obviously taking the week off work and my lovely dh is also taking time off to bring dad to and from the hospital yet my only sibling won't help out in any meaningful way, he just don't see it as his responsibility which I find very unfair. I know you can't make people care but I just can't understand it.

bloodywhitecat · 22/07/2020 22:07

That's sounds like a really tough situation to be in, cancer is an utter bastard. I think sometimes people hang on because they think that's what others want but actually when you speak to the family they don't, they just want the person to be peaceful. That sounds crass and trite but it's not meant to be that way I just don't know how to word it better.

IWantToBeNynaeve · 22/07/2020 22:15

No I know just what you mean and I've heard of it too with other people. My mum is at the stage now though where she doesn't want to die as such (except sometimes when the pain is too bad) but she knows 100% that she's dying and has accepted it. We've talked endlessly about it and she knows we support her and want whats best for her and that we would never look for 'life at any cost. She believes, as do I, that quality is more important than quantity. She has a strong religious faith (I don't myself)but she tells me she doesn't understand why God is making her hang on and on and suffer like this :(

joystir59 · 25/07/2020 16:14

My DW died on 2nd July. Never felt pain like it.

iwantavuvezela · 25/07/2020 16:45

@joystir59 I am so very sorry to hear that you have lost your darling DW - sending you much love and thoughts

notapizzaeater · 25/07/2020 17:06

So sorry to hear that @joystir59 ((hugs))

Frikonastick · 26/07/2020 00:58

My most sincere condolences @joystir59

chinchin77 · 28/07/2020 13:37

As mine @joystir59 my grief is raw, as yours is. I am so sorry for your loss. Take care. @Willowkins has started a new thread on bereavement, grief and healing if you ever feel like popping over. 🌹

notapizzaeater · 28/07/2020 22:46

Shit day, we've had our lovely 12.5 year old dog put to sleep today. We are all in pieces. Add to this DH has in 24 hours has two huge lumps pop up on his shoulder/collarbone (left one was up last night, by this morning the right one has appeared) and he's suddenly got a shake 😭

He's still breathless from last week, hospital want me to monitor and speak to them Thursday.

chinchin77 · 28/07/2020 23:01

I'm so sorry @notapizzaeater that's so sad, grief for our pets is the same for as our humans. Thinking of you 💐. My DH has shoulder lumps - one was a golf ball size and another pea size, the oncologist wasn't too concerned but at the end they decided to try radiotherapy on them, which never happened.

Frikonastick · 29/07/2020 00:07

@notapizzaeater thats so shit. I'm so sorry. they are such a source of comfort so its a double kick in the shins isnt it.

Frikonastick · 29/07/2020 00:08

hi @chinchin77, thinking of you xxx

Willowkins · 29/07/2020 21:43

I sometimes think I started the worst thread ever and why anyone would want to join a thread with such unrelenting sadness I can't imagine. Except that this is real. And it's important to be with people who really get what you're dealing with.
Much love to both joystir59 and notapizzaeater

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notapizzaeater · 29/07/2020 23:32

Absolutely we need somewhere save to share our darkest thoughts.

Just to add to my shit shit week, DH was finally weaned off his steroids this week (which was also starting to affect his mobility and strength) and he's back to square 1. He spent ages washing his hands in the downstairs loo then walked into the garage looking for the loo. He's made lots and lots of these mistakes today. I need to phone the hospital first thing to find out options. He couldn't open his email on his work phone tonight.

He's still breathless with anything more than about 20 steps.

It's just one thing after another, it really is death by a thousand cuts ..... he's really is such an intelligent bloke and he's like a toddler at the min.

chinchin77 · 30/07/2020 09:30

Oh @notapizzaeater this is just so sad. The loss of dignity is heartbreaking. Much love and strength to you.

notapizzaeater · 30/07/2020 21:53

Well DH got took to hospital today in an ambulance, the doctor thinks he might have had a stroke or something is def going on in his brain. He's just had a ct and waiting fir results. I'm not allowed that at all so sat at home waiting.

chinchin77 · 30/07/2020 23:20

I'm here if you need me. Will you be able to visit in Hospital?

Frikonastick · 31/07/2020 01:06

@notapizzaeater thinking of you xxx

Willowkins · 31/07/2020 07:24

Just caught up with this. How are you nota? Did you get any sleep?

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notapizzaeater · 31/07/2020 08:56

They started him back on steroids (that we’d just tapered him off) and moved him at 5.30 off acute admissions to the cancer ward (he rang to tell me ! When I said it’s 5.30 he said I didn’t realise it’s so late ???) he’s just rang again to say his canula has leaked blood everywhere (they gave him something in case of blood clot in lungs presume warfirin) so can I take more clothes in - he’s not seen anyone yet so don’t know what they thinking or seen x

I slept on and off - was exhausted as been up lots night before checking his blood sugar

notapizzaeater · 31/07/2020 14:15

He's seen the doctor (but he's still confused so not sure if it's right !)

He thinks they've ruled out a stroke, they think either his brain tumours have regrown or he's got new tumours - sorting out mri for him. Not allowed out this weekend and no visitors 😭

The breathless they think his primary tumour has changed shape (?)

I've asked the doctor to ring me

notapizzaeater · 31/07/2020 21:50

I’ve spoken to the doctor / they aren’t sure if the breathlessness is a blood clot or because the original tumour has changed shape so could be pushing on an airway. They can’t check his chest for blood clots as they need to use contrast and they can’t because of his kidneys so they are going to use an ultrasound on his legs tomorrow. If it is a blood clot they can’t treat it as the tumours he had gamma knifed at Xmas are much more swollen than before and a couple of them have bled so they cannot treat blood clots (which we don’t know if he has but normally they would just treat them in case). They’ve put him on huge doses of steroids to try and get the swelling down - he’s in at least for the weekend - big meeting Tuesday where they will decide next steps.

chinchin77 · 31/07/2020 22:17

Oh @notapizzaeater my thoughts are with you - the bastardly cancer gets through the body like a set of dominos. Sending strength to you 💐

joystir59 · 02/08/2020 08:20

@notapizzaeater thinking of you and sending you a huge hug.