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

Check the home care, my DH came home (only lasted 48 hours) but the hospital couldn't get Marie Curie involved and even if they had I was warned it would be fir 3 nights only. The only care they could get was 4 x daily visits from carers plus 1 x daily district nurse visit (to top up syringe driver). DH was diabetic, I had to take control of his blood sugars and injections. I was much happier he was home tbh, he didn't want to die in hospital (when he was brought home he was non responsive). Our hospice likewise only had 1 x hourly visit each day, DH spent a month in there over Xmas / New Year - tbh it was lovely and they helped tremendously with the pain relief. He came home ok for 3 days before being blue lighted into hospital fir 3 days before I got him home,

Have you room for a hospital bed ? They are huge, ours went into the living room which meant he was close by so was lovely and I slept on the sofa at the side of him. It took them a week to collect it afterwards which was traumatic 😓

There isn't a right answer only what's right for you.
My DH didn't make it home from the hospice but he was comfortable and had 24 hour nursing care. I was spared having the black van come to the house.

Thank you for your thoughts.

Lots of conversations and tears today.

We have agreed that the hospice would be the best thing initially as they really want to tweak his meds and move him from top up pain relief given through a port in his syringe driver to via his peg, which will be easier to manage if he does come home.

But trying not to think that far ahead.

The hospice does look lovely though and I think he will be very comfortable there.

They're also talking about doing some blood tests and possibly a scan to see if they can give us more of a prognosis. They didn't expect him to still be with us now, but he seems to have bounced back a bit - well, quite a lot really. I sat at his bedside last month for two days holding his hand as they said he was going then. Now he doesn't seem much worse than he did two months ago. I know the eventual outcome will be the same but it's so confusing.

Been a mess this week, crying at random times. Tried watching the Kate Garraway thing about her husband, had to switch it off.

Bloody new advert for Airbnb keeps being on telly with Dolly singing 'I will always love you' - I'm in tears every bloody time .......

notapizzaeater I know what you mean. It's "I'll never love again" (from a Star is Born) that gets me every time.

And you know, I don't remember crying much during - we were being so strong and capable - but I think we need the tears now. They're proof of our love and our loss. They release us.
Big hugs from me.

I haven’t been posting on here in awhile , things had been relatively stable but last Thursday I walked into Guys hospital with my husband (there had been some worrying symptoms on mother’s day and I took him to A and E to get checked out) + then had a further MRI scan and on Thursday went to get the results of his MRI scan -was told the cancer had moved from brain and was now also in meninges area (reason for all the symptoms which I bought was an effect of radiotherapy) and now terminal.
Not even a week later I’m sitting in our front room, which now has a hospital bed in it, and my husband is on end of life care - he has gone down so rapidly, today has remained mostly unconscious and just breathing. I’m really not sure how this happened all so fast .
To complicate matters (if that is even possible) family that flew out to visit are stuck in quarantine outside Heathrow (although allowed one 24 hour compassionate visit to see him).
This is really hard

((Hugs)) @iwantavuvezela

My DH went downhill super fast - none of us where expecting it or ready for it. Hope his family get to spend some time with him. By the time we got DH home he was totally non responsive to everything 😭

Hang on in there vuvezela. I hope the family's compassionate visit happens quickly. Maybe use that to have some down time for yourself.

Thank you - yes his family came immediacy on the Sunday and spend that night and Monday with us - my husband was able to recognise them, was conscious, and all the end of life care was put in place whilst they were there. They have been allowed a further 6 hours and they came to say their “goodbyes”. For now my husband is breathing and still - but he is a young man - 55 - so strong heart which will probably keep him going for awhile. It’s heartbreaking, it’s ending, I did not expect it this quickly or in this way, but as we walk these journeys with our partners & family we learn we are capable and able behind what we ever thought. Our house is overflowing with love, calm, music, flowers, candles burning - it’s a beautiful space and I am just here to honour and love this man brimming with integrity and honour. For now, it’s my chance to shoulder the rest, he had to do the cancer so I’ve got this.
To everyone else somewhere on this journey I send love and strength

iwantavuvuzala it sounds like you have created a wonderful love-filled environment for him. Sending love and peace to you both.

@iwantavuvezela, i thank you for your love and strength, and send it back to you twofold. All the love and light to you xxx

For now, it’s my chance to shoulder the rest, he had to do the cancer so I’ve got this

Sending you a little bit of extra love and strength vuvezela

@iwantavuvezela hope you're doing as well as you can xx

Thank you - my husband died yesterday in the early hours of the morning - he was loved and safe until the end. I awoke suddenly at 2.20 by the absence of his breathing and knew he had gone.

The house is quiet, and I realised how much time there is now in a day.. The hospital bed is still in our front room, the pillow lies with his head indentation. My hand follows the shape of it.

((Hugs)) so sorry for your loss.

I had to chase the hospital bed - they left it in the front room for about 10 days before they collected it.

If you need a chat/rant/cry please shout ....

@iwantavuvezela, my most heartfelt condolences to you and yours xxx

So sorry to hear this iwantavuvezela

@ClashCityRocker

Hello. I hope you don't mind the intrusion but noone in real life understands the current dilemma.

My beloved husband is currently receiving end of life care in hospital following failed treatment for head and neck cancer.

He currently has a tracheostomy and is peg fed, and has been for the last seven months - pretty much since he was diagnosed, although the trachy is a more recent addition.

The hospital have been great in many ways, however the ward he is on has been exceptionally quiet due to covid. As he needs pain relief every two hours in addition to the syringe driver there are concerns that when the ward becomes busier this won't be feasible and could leave him in pain.

So the options are hospice or hospice at home.

Our natural instinct is to get him home, however I don't know whether my/our desire to spend as much time together as possible in the last few days/weeks is making us not look at this objectively. The cons of being at home:

• they have mentioned having a nurse present at all times, 24 hours a day. I'm not sure why, as even the nurses have said he doesn't require any nursing care beyond changing his trachy inner once or twice a day and pain relief. I can administer pain relief through his peg which has been confirmed by the ward nurses.

• the house is small - one useable bedroom (which is where I'd sleep), a lounge/diner and a kitchen which we could probably squeeze a table in. Where would a nurse go? I just can't see how it would be practical.

• he is at risk of a catastrophic bleed due to the location of the tumour. Aside from the devstation of losing him, this would be hugely distressing at home.

-can I cope? I think so. I have done so far. And actually with 24/7 nurses it'll be a damn sight less than I was doing before. Even with what I believe is the more usual package of district nurse/Marie curie I would have a lot more support.

So considering the hospice. It looks lovely, he would have his own room and some outside space and of course access to specialist nursing care and equipment 24/7. Cons:

• Visiting in the time of covid. Currently one hour prebooked visits, lateral flow test before visit. And of course, if cases go up again who knows what will happen. At the hospital I am able to come and go as I please and currently spend around eight hours a day with him and have been able to stay overnight. Only one visitor allowed per day and only two different visitors in total.

• Travel is approximately an hour each way via public transport. I don't think this is a huge issue but would feel better if he was closer.

• Even at the final stage, no overnight visits. If he's actively dying, I'm turfed out at 8pm when visiting ends. Although I'm not sure how strictly this is enforced in practice.

It would be lovely to have him home - to be able to sit and Potter about around him, watch telly without the pressure of being in 'visiting' mode.

He is very much still himself, sleeping a bit more, can't talk clearly due to the tumour but communicates with writing and an app. Still takes pleasure out of things.

They gave him days to weeks to live at the begining of February. At present he seems as well now as he did back then, but we did have a blip initially when his breathing chanced ad I got the phone call so very aware it could all change in a moment.

My husband initially was adamant about going home, but is now considering whether the hospice might be the better option (it's mostly the 24/7 nurse in the house that has changed his mind on that one.)

We are having a chat with the palliative team today and have a list of questions.

Can anyone think of anything I may not have considered?

Please forgive my intrusion in this thread. I wanted to let you know ClashCityRocker that my FIL passed away from throat cancer several years ago now. He was at home until the end, which came about due to a catastrophic bleed due to the location of the cancer. Aside from the fact that he was deeply loved and is missed terribly, his manner of death was profoundly traumatic for all of us who witnessed it. My brother-in-law stayed at the house to clean up and he continues to suffer nightmares and flashbacks. It is something I will never, ever forget. Please do exactly what feels right to you; please don't think I for one moment would want to tell you what to do as it's such a personal and upsetting decision. I just wanted to give you another perspective. Much love to you and your family.

So sorry for your loss vevuzala. I am glad you were able to give him some peaceful final days.

Thank you for sharing your experience starlia. That does indeed sound deeply traumatic and has really given me food for thought. I want to go into it with my eyes as open as possible.

Still waiting for a hospice bed as an interim measure to getting him home or possibly staying in the hospice. DH's condition is stable at the moment but of course that can change like a lightswitch. He is needing pain top ups every two hours via injection, which is a barrier to getting him home. He may be able to move to having the oxycontin through his peg instead, but he hasn't found this as effective. He's convinced he will need less pain relief at home as this has been the case for previous admissions but it's just too much of a gamble to take.

I am hoping that if and when he gets to the hospice he will maybe feel more settled there and more accepting that coming home may not be practical, or in both his or my best interests.

I've put my big girl pants on today and fetched DH ashes home, how can a whole person be such a small box ?

@notapizzaeater But the whole person isn't there...he's in your heart, in the hearts of all those who loved him and in the places that he loved.
Well done for collecting him.💐

Well done nota - and it's perfectly okay to take things at the pace that suits you.

So very sorry for your loss, iwantavuvuzela, and glad that the quiet and peace of his dying was a comfort to you.

Well I've had my shiny new knee, I was on the ceiling all the time, kept thinking 'what if I don't wake up' the realisation that I'm the only parent left is petrifying .....