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

SchrodingersKitty you come across as a kind, considerate person - who has had to face the awful combination of Cancer and Covid-19. For now just take a moment for yourself.

Hope you're all doing ok. DH has a routine X-ray today but I noticed last night his ankles / tummy very swollen so they asked him to pop up to the ward afterwards. On way in to the car he managed to trip,over the puppy and went over on his ankle. Still waiting for results of that but they are getting him a boot so he's obv damaged it. They are keeping him in for the fluid retention - talking about draining it tomorrow ? It's hard as I'm not allowed in and he asks no bloody questions.

Ah @SchrodingersKitty I’m so sorry, my most sincere condolences to you and yours. What a difficult path you have had to navigate for quite some time. I am wishing you comfort and hope you can let the guilt go, you are so undeserving of that.

DH is out of hospital complete with boot on his fractured foot. He's aged overnight 😭. He looks so ill and so weak. His whole lower body is all bloated with fluid. He's being discussed at MDT Tuesday. Renal are ringing us Friday. I'm so scared 😟

Send you a handhold nota and hugs

And he's back in, oxygen level was 72 this morning. Not heard anything, it's so much harder with Covid 😭

I'm none the wiser, he's being treated for high potassium and on IV antibiotics for a chest infection. When he rang me he was almost delirious telling me how he's going to be moved via a boat to a hospital 50 miles away. Phoned the hospital back to speak to one of the nurses asking them to check on him

I don’t know how you are all coping not being able to go into the hospitals, at least here we can no restrictions.

He's got pneumonia, and a pleural effusion. The cancer drugs aren't working. His already crap kidney function is much worse. The doctor has tried to talk to him about end of life but he's still really confused. It's absolutely shite not being able to see him. It's our 27th wedding anniversary tomorrow 😭

@notapizzaeater it must be so hard for you, I hate not being with dh for chemo let alone when he's in hospital.

So I had a shitty conversation with dd's (year 10) school. They have a confirmed case of covid. Dh and I decided if they had any cases we would keep dd home, I rang the school to explain the situation and the student support were fucking awful. If we keep dd off it will go down as unauthorised and we could be fined 😡 I was hoping they would sort out some work for her to do at home, not get threatened with the bloody wag man and a fine! We are keeping her at home until they have no active cases anyway.

Just had a conference call with the doctor and DH / the cancer is progressing - they are keeping him on the drugs in case it’s slowing it down. They are scanning him again to see if there’s enough fluid to drain in his lung. They trying to get him on tablet anti b so he can come home. No other treatment options available. The doctor thinks 2-3 months. He’s coming home on oxygen when he’s out.

@loubieloo4 I'd be bloody furious at the school, they are playing Russian roulette with your family 😭

I'm reading your posts with so much sadness - revisiting this thread is also so very triggering for me. I just hope you are all ok (whatever that means) I'm here with you even if not I am a regular.

Hope everyone is as ok as we can be.

DH is home, we've had the oxygen tanks and concentrators delivered today. The hospital have sent him home with end of life meds 😭😭😭

It's 200 degrees in our room tonight, he's freezing.

He refused to take his meds this morning, he'd decided that they were poisoning hIm - but of course they didn't ask ! The gamma knife doctor rang yesterday, couple of the tumours have grown a little but he thinks he's had a small stroke.

nota this sounds just awful. I'm so sorry. These are difficult times but I hope you will have some time for you

Hubby is home, for the first time last night he used the oxygen at home 😭

He's sleeping 12 hour nights then 3/5 hours in the afternoon plus dropping off every few mins watching tv. It really is like death by a 1000 cuts.

Just waving. No energy to type. Sending all the feelings

@Frikonastick how are you doing ? Have you your results yet ?

We got DP's diagnosis yesterday. Pancreatic cancer. He's a candidate for the Whipple's procedure but without it he will die in the next 6-12 months. How does this happen when he looks so well. I've hidden all the paperwork we were give from Macmillan and Pancreatic Cancer UK yesterday, I have known for months my gut instinct was right but I am still too cowardly to read it. The surgeon opened the conversation with the statement "I have no good news for you"

@bloodywhitecat ((hugs)) my DH didn't do any research or read anything about his cancer, me I could be a mastermind contestant on it !

@bloodywhitecat. our consultant started with, have you any money, because if not, there's nothing we can do for you. So I can empathise with the plank to the side of the head feeling.

@notapizzaeater, yes, its superficially spreading melanoma, im having a second excision on monday. it turns out im also anemic and they think i might have a stomach ulcer which im not sure is right because my stomach doesnt hurt at all. so im having chest xrays and colonoscpy in a couple of weeks.

DH is recovering from his heart attack though, so that something good.

Waiting for a date for surgery is just horrendous. I live in fear of COVID closing the hospitals and him not getting his surgery. People ask me if I am OK and I say yes but I am really not. I don't have many real life friends to hand and I have a damaged relationship with my mum so I don't have much real life support. I can't face picking up the phone to Macmillan or Pancreatic Cancer UK because I know I'll cry and I hate crying. How do you all do this?

@bloodywhitecat I've been following your story. I've no relevant experience to offer but please know that you have many friends here who are standing with you and your DH.

My best friend dragged me kicking and screaming to the local hospice support group, I sat there and cried for 3 hours, full on snotty sobs :(

Where are you in the UK ? Pm me if you'd prefer. Tbh I wouldn't have got this far without my family / friends around. Not that they can do much but just distracting me.

@bloodywhitecat another dh here who refuses to read anything to do with cancer, surgery or chemo! Like @notapizzaeater I could probably win mastermind. Without being sexist I think the menfolk are more pragmatic and just want to get on with it. I have to know all the details and likely options, doesn't help that I'm a nurse. I'm more of an emergency/medicine nurse so had very little knowledge of oncology and surgery.

As to how you get through it, I have no idea 🤷🏼‍♀️ just walk one step in front of the other, day by day. When we had DH's (38 at the time) diagnosis of stage 4 terminal with a life expectancy of 12 months, we took time to go away together alone and with the children. Making memories for want of a better term, I obsessively take photos and videos.

What I have found is that life is so much clearer, the little things really don't matter I can't get worked up about stuff that isn't going to make any difference to our life. In a weird way life is better now, we spend so much quality time doing things we enjoy that we wouldn't of had the time to do before.