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

@notapizzaeater that is very shit. I really hope they get pain under control quickly. Christmas is such a pressure cooker anyway. With a terminal illness it becomes so much worse. I’m juggling everyone else expectations of ‘the Season’ and wondering whether I’ll get a call in the night.

@notapizzaeater I hope yesterday's move went ok and your dh is now a lot more comfortable. I was thinking of you all day. Please please take care of yourself too.
Are you able to visit him in the hospice?
Unmumsnetty hugs from me 💜💜💜

@TooOldforBouncyCastles and @notapizzaeater love to you both. To all going through such hard times especially in these times.
We’ve had so many bumps in the road, dads biopsy results are now to be given Christmas Eve... 🙁

@LavenderBee @loubieloo4 @TooOldforBouncyCastles

He’s in and settled / was allowed in for a few hours yesterday whilst doctor admitted him. They’ve started him immediately on steroids to try and reduce the pain. We’ve not had the official CT results from oncology yet but the doctor yesterday told us his primary tumour has grown and all the little ‘areas of concern’ on the last ct are now full blown lung tumours :(

DS and I are allowed an hours visit a day so will see him this afternoon.

So sorry @notapizzaeater. This is just so horrible and Covid restrictions are dreadful. I fully appreciate the need to protect staff and other patients but one of the longer Covid consequences will be to people’s ability to grieve because of enforced separation.

@LavenderBee that’s crap timing

Thanks @TooOldforBouncyCastles isn’t it just x
@notapizzaeater I’m so sorry to hear this.. am thinking of you xx

@notapizzaeater I'm so sorry xx I check this post to see what's going on. I'm five months into grief, and it's just a huge pile of shit. Am here for you 💕

How is today @notapizzaeater?
Very drowsy sister today. She wakes very briefly so you need to hover and catch that moment to pass fluids to her. One mouthful if you’re lucky then asleep again. I wonder how long this can go on for

@TooOldforBouncyCastles it's rubbish, he's still in so much pain 😥

MDT meeting Wednesday to hopefully go through options

That’s not good. How distressing for you all and Wednesday must seem like a long way off.

Apparently the nurse who visits every day thinks sister’s new position (leaning to one side) is due to the tumour. No idea in what way this is happening (she has mets in her spine but is it this or something else) but I thought her hand on that side was a bit weaker tonight and she looked a bit drawn ? In pain...who knows because she can’t say. It’s absolutely shite to watch a loved one suffer.

@TooOldforBouncyCastles it is, it really is. It's death by a thousand cuts. Have they done any new x rays / ct for your sister to check ?

No and there are no intentions to because they don’t plan to treat. Moving her to hospital would be quite traumatic. She’s been in her bed and barely moves other than for personal care since beginning of December. The decision was that any investigation is not going to help but will cause pain and discomfort. It does mean we don’t really have a clue what’s going on tumour wise.

@TooOldforBouncyCastles would they not consider pallative radiotherapy ? My DH had this on his ribs 6 months ago and it made an instant pain relief.

She can’t cooperate and would get up and wander off in the middle of any procedure unless sedated when first diagnosed. She’s too ill to do this now but it would still be traumatic for her because she doesn’t understand. I’d not like to see her moved now tbh.

I’m sitting and watching her wondering if the regularly two missed breaths are significant. It’s a waiting game now. I don’t know if it will happen today or tomorrow or next week or the week after that. Some moments I don’t feel like it’s going to happen at all.

She can be slack jawed and missing the odd breath. Her SATS are at 85 -90 but pulse is good. Then she wakes, turns her head and looks at me. Very occasional drinks but often appears to struggle with that. Apart from missing the odd breaths she’s breathing well.

I’m torturing myself with trying to be present as much as possible but also juggle family and work. Christmas seems like a nightmare of pretence. The world is still turning and I feel like I’m going mad.

@TooOldforBouncyCastles that's really tough on you, you need to take care of yourself.

They can't get DH pain under control so he's stopping in the hospice - they are putting Christmas dinner on for DS and me, so I've shoe horned the turkey into the freezer. DS and I had pigs in blankets with giant Yorkshire's for tea. Will try and eat everything else up over the week.

How did MDT go?

We don't know yet, hospice chasing the doctors for a clue ., grrrrrr

I hope you hear today. No news is far worse than even bad news in my experience

Hope you've all had as good as Christmas as you can have.

Ours was bittersweet. He was in so much pain it is heartbreaking to watch. Because of COVID we ate Xmas dinner on our knees in his room with him. He managed 2 hours before it was too much. The hospice are brilliant, keep swopping drugs trying to find a combination that works. I'm allowed in for a Hour a day - I've rubbed his back today and all I can feel is bones 😢😭

The hospice are chasing oncology for results but Xmas isn't helping.

I stayed with sister until 1.45pm and then went home. My DD is 18 but really upset at not having her older siblings home for Christmas (Covid related). She’s very close to my sister helping me look after her and take her out regularly so she’s very sad about things. Our first Christmas without Mum...so I felt total conflict about where to spend Christmas Day ...she needed me as well. However sister’s two carers were run off their feet looking after 7 others and cooking a meal so me being there meant a lot. In the end we had a quietly strained making the best of it Christmas.

Sister has been about 4 weeks without eating and in the last week has reduced fluids considerably but still taking them mainly in the form of liquid medication. She needs several anticonvulsants and currently has two syringe drivers but takes two others in liquid form. I’d rather she just had drinks she enjoyed but the risk of her not getting meds is too high and further syringe drivers isn’t great either. Her skin has reacted to the two she has.
She looks quite unwell and sleeps a lot. Mostly she looks really really unwell but occasionally she wakes and looks brighter. I still think it could be tonight, tomorrow, next week but surely not a month away?

Your Christmas sounds similarly challenging @notapizzaeater but worse as it’s a parent and husband. It’s the most stressful time

Bad couple of days, got there yesterday and couldn't wake DH up, he'd open his eyes and go straight back to sleep. When we got him awake he was. Dry confused. Blood oxygen was low, Doctors called and they think he's starting a chest infection so started him straight away on anti b. He's still struggling with the pain 😭. Our oncologist is hopefully back tomorrow so they are chasing them. Been in today and he's still confused but not as much. He's really down being away from home but until they get pain sorted he can't come out.

Similar tale here. Oxygen SAT very low, won’t wake up and breathing has changed. Pain levels very hard to assess. Seems to be nauseous and agitated this morning. The hospice at home service were contacted last Thursday and were ringing back. We rang again today because of the agitation and breathing changes but struggled to get through to anyone as it appears shut down for Christmas???
I think myself and carers would really value the input of a clinical professional. I hope they get to us tomorrow and no crises in the night.
Dying in the middle of a pandemic is shite but it’s doubly shite if over a Christmas bank holiday weekend.
I feel ill and drained. I’ve got an eye infection and cannot do anything because GP and pharmacy shut. I think I’ll be sat bedside tomorrow so I’m hoping it resolves itself overnight.
@notapizzaeater how are your DC coping?

@TooOldforBouncyCastles DS is 18 with autism - he 'knows' but doesn't 'know' IYSWIM DH still looks perfectly ok unless you actually touched him you wouldn't notice his missing bum, legs, arms. We keep talking about it so it's not a shock.

Hope they sort something out tomorrow

That’s incredibly hard for you to manage. I’m juggling DD18 who doesn’t have autism and I still feel exhausted by meeting her needs for reassurance.
Bed for me. I anticipate a long day tomorrow. I hope you get better news