Welcome to the Cancer Chat community VixVix247 although I'm really sorry to hear your mam is in the latter stages of advanced lung cancer.

There are many discussions about steroids and end of life care on the forum so do be sure to use the 'search forum' option in the purple bar to have a look and join in on any that resonate with your situation but if you'd like some medical input and explanations about the changes that will occur once your mam's course of steroids ends then do be sure to get in touch with our team of cancer nurses. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

I know nothing I can say can make this situation any better but I hope knowing that we're here for you and sending our strength and support your way can offer some small comfort at this very difficult time.

Kind regards,

Steph, Cancer Chat Moderator

Hello Vix, I'm so sorry to hear about your mum. I'm searching for answer myself as we are in exactly the same situation with my mother in law. I was wondering how your mum is doing since you posted this question? xx

Hello,

So sorry to hear about your mil. 

Well, I'm so sorry but in our experience the boost was very temporary. I posted that question on the 11th October and she went downhill very quickly after about a week of feeling better. She became bedbound and incontinent by I think the 21st Oct and died at home on the 1st November. She deteriorated very quickly and even with two drivers in by the end it was hard to keep on top of her pain and hallucinations. Also there was (and still is) a huge shortage of carers and night sitters so if they want to be at home at the end I would start to investigate the support you can get with the district nurses now as it was very hard to line anything up. 

Honestly it's been such a hard experience so I am sending lots of love and strength your way. I would 100% prioritise time together if she's feeling well, we did and I am so pleased we did. 

ALSO this is just our experience so please know it might be different for your mother in law. I read "With the end in mind" in the week or so before mam died and I found it helpful to have an idea of what possible things to expect as I had never been through supporting someone at the end of life before. 

Really hope you are doing okay, know this time of year is very difficult. 

Vix x 

Hi Vix

thank you so much for taking the time to reply, and in such detail, during what must be an incredibly difficult time for you. I am so sorry to hear your mum has passed, and that it happened so quickly after your post. It seems your mum and my mother in law are almost mirrored in terms of their type of cancer, prognosis, etc... she is currently bed bound 99% of the time. Very reduced urine output so only gets up once a day maybe to Wee. She has a blocked bowel now, zero bowel sounds the nurse said. She's been on a driver for about 3 weeks but she had a second driver fitted yesterday for extra meds as she was having to call the district nurses out once or twice a day on top of their usual daily visit to refresh the driver meds, purely due to the pain she was in. In three weeks they still haven't quite managed to get her anywhere remotely pain free... she had a port fitted also this week for her injections on top of the drivers, but when the hospice team came out yesterday to assess again they said that steroids are now required, so she will have her first steroid injections today, one in each arm. 
Everything I read on here tells me she will likely perk up but then have a big crash and will start to slip away from there... I have been trying to prepare my wife for this, so this chat forum has been a godsend the last 12 months every step of the way. I think loved ones start to fret and panic near the end desperately clinging onto any advice or information they can get from others in the same boat, as it were... she actually wants to die in the Hospice so I think as soon as a bed is available she will be going in, so we are just waiting on the call to tell us. But I can't see her coming out of there. She's declined drastically in the last four weeks. Even more so since the week leading up to Christmas. The nurse even told my wife yesterday to start thinking about taking time off work "now" as it will be sooner than we think, so this seems to link up with your own experience Vix and the advice and information you've so kindly given to me with your reply. 
 

Taking the time to reply to me during your own grieving period means the world to me. Thank you from the bottom of my heart. I'm so sorry you lost your mum. Sending huge amounts of love to you x

So after four days of a chattier happier lady, the nurses have started to reduce her steroids (only a little bit still) and we are told a bed has become available in the hospice in the next couple of days. Some confusion is creeping in, a few instances of seeing things like spiders on webs and the curtains jumping out at her, and she sometimes dribbles a bit of water when she's trying to sip from her bottle / cup. Despite the steroids she's still been bed bound, only getting up once or twice to use the commode with the help of the hospice carers at home. Still very sleepy. I very much doubt she will be coming out of the hospice ... but I also read that patients will only be given a bed for a couple of weeks or so in a hospice setting before being sent home or sent to a care home etc so I'm wondering if she has less time than we thought or that perhaps the hospice will indeed want to discharge her home after some treatment despite her already being in her final weeks anyway? 
 

All so confusing :( 

Hi there Pepper,

I'm sorry to hear about your dad. Nobody deserves to go through this, and I want to extend my thoughts and sympathies to you and your family at this time. 
 

As for our experience with hospice, sadly (and possibly thankfully) the stay was very short... my mother in law declined so fast once she was moved into hospice. It's like she gave up. She was moved in on the Thursday, and by the Saturday night at 9:37pm she was gone. The hospice itself was more "medical" than I was expecting. I'm not sure why but I thought it would be more of a home-away-from-home vibe but that was my young niave mindset I suppose. She was looked after, given whatever meds she needed or asked for to keep her comfortable, and when it was "imminent" we were called in and basically left alone in the room all day Saturday as the hours ticked away... after she had passed the empathy, sympathy, dignity and care provided to us all was brilliant. Truly wonderful souls, hospice staff. 
 

if you have any specific questions I'd be happy to help you. Don't hesitate to ask. You are in my thoughts. X

Thank you so much for your honest and thoughtful reply Kimmykins. As I'm sure you could guess from the time of my message, we didn't have a good night with dad. He had today gone to hospital so I wonder if he will come home or straight to a hospice. 
 

Once again, thank you so much and I'm sorry that you have had the experience to be able to talk to me about it so eloquently.