Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

@daffodilsandredwine glad things are getting in place. We kept as much 'normality' as we could. It's hard but I was 'ok' too, I coped when I had a 'job' to do. I think I struggled more when the machines took over as I'd nothing to focus on.

I'm glad you're getting support@daffodilsandredwine . And yes, I second the almost relief of being able to do something practical to help.

Just an update - because the updates from others helped me. I'm lying in bed, DH next to me. He's so thin.. 7 stone.. just bones. I think we're in the last days, but it's so difficult to know. I've asked the District nurse to come - just to check if there's anything he needs.

He wants to be here - in his own bed. I'm giving oral morphine but the pain doesn't seem too bad. He's upset, distressed, but doesn't have the energy to lift a cup now... He's sleeping.
I am very tired - this is hard. But I knew that from those of you who have done this before me. But I think I can do it... He needs me - so I will.

@daffodilsandredwine your post is very moving, I too am thankful for yours and all the other updates since I last posted. I always read them but I can't always write but today I can. I don't know how everyone finds the strength. I hope you can find some sort of rest or peace in the days ahead. It must be an incredible comfort for him to know you are so close.

It takes courage and selflessness and you've clearly got both of those. You've also got us.

Thank you @BloodyMaryisthetruth and @Willowkins .
The nurse came and agreed we are at the end. It's ok. She gave him some morphine and something to suppress a mucous cough which was distressing him.
He's able to ask for sips of water. I'm just here with my laptop and my book. And my daughter... we turn him when he shows he's uncomfortable.

I'll call the nurse again if he seems distressed or in pain and she'll give him some more drugs to help.

I've been so practical up until now - but it suddenly hit me today that this isn't just a "job", something I have to do .... there'll be a loss. I simply cannot imagine the absence.

This thread has been - and still is - a very good place to be. Thank you for it. (I'm going to log off for a bit...) X

Just thought I'd let you know that DH died. I can't say more at the moment - it was yesterday - I knew it was coming - I thought I could cope - but I can't. I am so lucky to have good friends around me.
Thank you for this thread which has helped. X

Those feeling you are experiencing are awful but completely normal, there is no right or wrong way to get through, there is just your way and your way is OK. Lean on those who can be leaned on and forgive yourself what you are feeling.

I am so sorry, it is such a raw, raw pain. Much love and strength to you

I'm so sorry to hear this @daffodilsandredwine
I know it was expected but it's still a shock. Sending you peace and strength for the days ahead.

@daffodilsandredwine nothing ever prepares you for this, even though you 'know' you really don't. Take all the support you need x

I'm so sorry @daffodilsandredwine . You think you're prepared for it but you're not. Sending strength and courage.

You did an amazing job for him.

@daffodilsandredwine so sorry to hear this news. It’s 3 weeks today since my dh died. I have had lots of ups and downs but today was especially sad and I’ve spent the morning crying. I found his fleece that the nurses removed the night he died and am wearing it now. It feels somehow comforting.
I don’t really have any advice as it’s all so new to me. I made lists of things I needed to do when he was at home in the hospital bed as he was often asleep. I’m still working through everything and can’t actually believe it’s only been 3 weeks. It seems so long ago now 😕. I’ve been sorting things and making arrangements non stop and decided I would take today to just rest.
I am glad you have lots of support around you, it’s good to know you’re not alone, even though it feels like it most days x

ERROR - wrong thread

Hi @daffodilsandredwine sorry to hear of your loss. Here if you need us.

I'm so sorry @daffodilsandredwine such a painful time for you.

Thinking of you x

Today I did some of the admin. Registered the death, (the registrar was lovely), spoke to the funeral director, did the Tell Us Once forms... I am completely exhausted.

I would say about the cancer that we were very lucky with the treatment at first. Immunotherapy was wonderful and had completely shrunk the primary tumour. It gave us a year. But the secondary cancer couldn't be treated that way and once the treatment stopped it was very fast.

DH died at home - which was what he wanted - and it was good in most ways but not dissimilar to what happened to you and your DH @Timesnearlyup

The decline sounds similar - and the coughing and the mucus and the inability to sit up. (And the horrific weight loss).

We also had conflicting advice and although most of the team were good, when I really needed them at 2am they couldn't come. I was frantic as DH was in pain and I didn't know what to do.

I would have really valued someone to sit with me that last night - a doctor who could give the really strong stuff if necessary or do something to help. I have to live with the fact that the end was difficult.

Before that though, being at home was good. The kids ( young adults) were very much part of things and DH's friends could visit and I could work from the bedroom. It was good. But the last few days were hard.

I'll stay on the thread for a while I think as it has helped me and I hope I can help others.

@daffodilsandredwine you’ve done amazing to register the death so quickly. My dh’s last night was awful too. I won’t go into details, you were there with him and did everything you could, he was where he wanted to be.
I think everything has hit me hard today, I’ve practically had a breakdown tonight. I think I’ve been doing too much and it finally caught up on me today. Hopefully tomorrow will be a little better for both of us.
one thing I did do as dh wasn’t pension age was claim a Bereavement payment online. They paid really quickly too, if you’re eligible make sure you claim it. I think it was called Bereavement Support Payment.

@Timesnearlyup I can understand that it catches up with you. And I'm really sorry to hear this. And I hope you do feel a bit better after a night's sleep.
I'm trying to do everything as it stops me thinking. I'm trying to block the flashbacks. (You understand)
Our GP was very efficient and certified the death the morning he died - sent everything through to the registrar and I made an appointment. (When my mother died it took much longer). It's just luck sometimes.

Thanks for the tip about bereavement payment - I'll see if I'm eligible.

Today is another sorting things out day.

@daffodilsandredwine i applied online through Gov.uk and they called me when I was driving home from registering dh’s death and said I needed to get the death certificate and our marriage certificate scanned at the nearest job centre. I was literally driving past the Job Centre when they called so I took them in & think I had the payment a few days later. It helps!

Hello all. It's been a long time since I posted (maybe even under a different username, I change regularly)
DH (NHL) is currently inpatient undergoing a last chance trial and he has a PET scan today to see if it has worked. He's only day 14 after treatment and normally they wouldn't scan until day 30 but from his blood work they can't see any activity from the treatment administered so they want to scan and see what's going on. There's a chance he is one of the extremely lucky ones who have no signs of the treatment working and yet it does. Or possibly it hasn't worked. His scan is in an hour and we should receive the results later this afternoon.
I'm a wreck, I don't know how to get through these next few hours ? Am at home right now and going to head to the hospital in a couple of hours to wait with him for the results and I just feel this huge sense of dread.
He feels pretty well, considering. He was actually allowed home this weekend and we spent a lovely couple of days just us, relaxing, laughing, it felt like normal and now I can't even get my head around what I might hear later on today. It's so overwhelming. I don't know how to keep from spontaneously crying ??

@stormonaspringmorn I really hope he's one of the lucky ones and that you've had news by now.

Hi @stormonaspringmorn how are things now?

After long delays with the PET scan we finally saw the consultant this evening and she was pleased that the mass has shrunk a little and looks a little less active. She was still confused as to why they couldn't see activity in the blood (it was a trial for a new type of CAR-T therapy using donor cells for anyone interested) but she's pleased it's at least heading in the right direction although not taking the path she was expecting - though I guess this is the whole point of a trial??
We will know more on the day 30 scan in a couple of weeks but for now I can breathe a little. 🙏🏼
Am back home now with a glass of wine and a French choc mousse to make everything better

Fantastic news @stormonaspringmorn time to relax what a day

How is everyone doing,haven't posted for a while. Struggling to know what do for the best anymore regarding being at work, seeing friends, school run people etc. Anyone have any tips for dealing with normal people doing nice things holidays fun plans while we live this utterly shit alternative life? Really getting to me now. Only trivial though I know, it could be worse for DP medically but that just makes me feel guilty and ungrateful for not being happy now. Sorry just need to whine somewhere argh.