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Life-limiting illness

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thornbury · 27/08/2026 23:04

Welcome @Tinyhands I hope you get some good news. My dad has prostate cancer too but at 81 they're just monitoring (he's otherwise pretty healthy, apart from a series of skin cancer lesions).

Congrats on the transplant @blossomtoes, I hope it sticks.

@bookwormcrazy glad you've made some progress with the sofa bed. I have a stibborn one here too, and our house is very vertically arranged. I wonder if the day will come that we need a bed downstairs (there's plenty of room, and a WC/shower room).

Things not so good here. DH had 4 cycles of paclitaxel and carboplatin between April and July with a good response on PET after the first 3, then they decided to swap paclitaxel for pemetrexed. You won't believe how quickly his hair has grown back, but he's not celebrating yet in case they have to switch back and it all falls out again. The last four weeks he's really been deteriorating and the team said he just needed to get back on chemo and hope to stick to a tight 3 week cycle going forward (we'd had a bit of a break due to travel and his symptoms). One of the cancerous lymph nodes in the groin is very sore and swollen, and all of the pain relief achieved by radiotherapy in April has been undone lately with a huge resurgence in pain in the back and pelvis, as well as the return of night sweats. Last chemo (new regimen) was 17th Aug, and since then he went downhill further and very quickly, so by Sunday he was absolutely wiped out, but refused to go to Emergency and said he would message the oncologist on Monday, which he did. I got home from work and he was worse still, but continued to refuse to go to hospital, and when he finally got a response from the doc on Tuesday of course she said go straight to Emergency!! He was admitted, so has been there the last three days and they don't think he can be discharged until at least Monday. This has been his first admission since the diagnosis in March, and it really does feel like we've moved on to a next stage - as he said to me, 'This is where it starts.'

So far he's had three RBC transfusions, 2 platelets and a whole load of antibiotics, blood clotting agents (he's coughing up blood but chest CT doesn't show any tumours in lungs), morphine, paracetamol and oxycontin. Today he's been a bit more lucid but still very tired. Nights are busy with constant interruptions to manage the various things being dripped into him and in the daytime it's remarkable if we get 30 minutes without someone coming in for something. I made the mistake of saying yesterday that we'd had a nice quiet spell and within 5 minutes we had the respiratory specialist, nurse and catering assistant in there!!

The goal at the moment is to get his pain under control, reduce or stop the coughing up blood, and get his haemoglobin and platelets back in/close to safe limits. He will need more frequent monitoring with the next cycle as he's clearly susceptible to the possible impact of pemetrexed on blood cells.

We passed the 5 months since diagnosis milestone this week, and with a median survival of 4-15 months for this type of cancer every month that passes makes us feel that it's bringing us closer to an inevitable end point. There have been times in recent weeks where he's been in so much pain and so miserable with it all that he's said he doesn't care if he falls asleep and doesn't wake up again. His oncologist said today that they know there is progression, which is a change from the PET scan on 1 July where it was considered stable and well controlled. We just haven't got data or had a detailed conversation about how it has progressed and whether it's enlarged lesions and/or new lesions.

One of my friends is kindly meeting me in the hospital coffee shop tomorrow for a bit of respite. I've been sitting in his room from around 9am - 7pm daily. It's weird being home alone, even the dog isn't here because we had to drop him with our fabulous dog sitter on the way to Emergency on Tuesday and there's no point in me collecting him at the moment (plus he's having a whale of a time!)

Willowkins · 28/08/2026 00:10

Cancer makes us all pharmaceutical experts @thornbury. I hope your meet-up in the hospital coffee shop gives you a proper break from it all.

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Hisredipad · 28/08/2026 08:47

@thornbury , life your living now is what I was doing about three years ago. Please make sure you find time for yourself. Sitting on Hospital chairs is one of the most uncomfortable things in the world and towards the end of what I didn’t know was the end I took myself off to the Chiropractor once a week and had them put my back back in and manipulate anything that wasn’t quite right back into the right place before it started becoming a problem had taken me there in the first place

I wish I thought about that earlier. It would’ve saved me a lot of discomfort after DH passed. 💐💐💐💐

lastdaysofaugust · 30/08/2026 08:06

Hello everyone. Have been reading your heartbreaking stories Flowers I am joining, this could be long.

DH started grumbling about some back pain last summer and then he fell over at the start of this year. The pain seemed to ‘shift’ to his hip. I have to admit I did think he was exaggerating and I remember around Easter getting if I’m honest extremely fed up. I’ve always done the lions share of childcare and house stuff but I was doing more and more and more and it was interspersed with near constant groans and exclamations of pain; all we talked about was how much pain DH was in. It did start to really affect me mentally if I’m honest. By the time May and June rolled around any semblance of normality had gone. I was doing everything and getting more and more tired and probably grouchy as a result.

It was still a shock when DH went for a test in mid June which found cancer in his hip bone. Further tests established a mass between his lungs (that explains the back pain from last summer) but it seemed to take forever for anything to be organised. Finally, five weeks after the initial diagnosis he had a biopsy; another two weeks went by and the results of this biopsy came back and it was established it was a type of lung cancer which has spread to the bones, so stage 4. But before treatment can be established they needed to do a further biopsy to test for mutations. So another biopsy was done two weeks ago and the results of that are now back - inconclusive - so a surgical biopsy is being arranged now. I think we both feel that we’ve been sitting around waiting since mid June.

DH is both in denial and also very negative ‘I’m screwed either way’ was his response after the news about the biopsy Sad it’s horrible to see him like this. However I also identify with @bookwormcrazy as his worst moods are for us. He doesn’t shout or anything like that but he behaves as if our presence is a near constant irritation. He is still working but has switched to fully remote working. This is horrific as he has to work from the main family area of the house and it’s all open plan so I’ve had DH sat in the lounge all summer holidays on his laptop looking at spreadsheets and taking teams calls from 830 in the morning to sometimes 7 in the evening. He’s also working at weekends. He barely leaves the house except to go to hospital appointments: I think the only time he’s been out since hearing the news about the diagnosis have been twice to a pub with friends who came to see him and once to our DDs birthday party in mid July: that’s it. He can’t walk far at all so of course that’s very difficult and I don’t really know where he’d go. I feel like I don’t know him any more. I don’t know what to say or what to suggest. I feel like I’m walking on egg shells a bit around him. At th same time he won’t talk about things that probably do need talking about like finances and provisions for the children.

The unknown is a huge problem. I can see from ChatGPT that he could live years like this and that in many ways is as frightening as him dying. Of course I don’t mean I want him to die but I can pretend the current situation is a healthy one for anybody and it’s really affecting our five year old. I’m worried he’s developing some serious behavioural problems as this summer has been awful and he wasn’t really like this before. He’s so angry. The younger one is OK I think but DH is a bit more patient with her as she’s a bit calmer and gentler and also being younger and a girl helps (sexist but true.)

I love my children and DH and I am devastated it’s happened to us all but the effort it’s taken to hold everything together for everybody has been massive. I can’t even cry about it. I’m just a bit numb.

I am back at work next week/ this week; I’m part time as I have our three year old on non working days so that helps. But I don’t honestly know how long I’ll be back for, or how much longer I can keep this facade up!

Hisredipad · 30/08/2026 13:08

@lastdaysofaugust i’m really sorry for the situations you find yourself in. I’m also not really sure how you deal with it. I would imagine someone will come along soon and maybe offer some advice.

One thing that did occur to me is that perhaps you could privately arrange a meeting with the local hospice services and see what they offer

They were very good to me and looked after me just as well as they did DH in his final months. I found out during DH last month that our hospice offers much more in the way of in the Home care then they do actually at the centre. This was quite surprising really as I just assumed it was a place for people to go to pass away. I found that this was so far from the truth. It may have helped me to have been involved with them maybe in DH’s last year.

Not only did they have services for at home care they also had lots of other things like just chatting sessions and sessions for children and to relieve the burdens of the situations that unfortunately you find yourself in.

Obviously contact in the hospice is a very daunting experience, but I also found that they do actually offer long-term pain relief care for people that we’re not expected to die in the short term. Recently our hospice has dropped the word hospice from its name and it’s just known as the lady who it was named after. I think this is in a bid to enable the local people to use it services without thinking it just belongs at the end of life.

Thinking of you and wishing you all the best 💐💐💐

notapizzaeater · 30/08/2026 13:25

I’ve commented on your original thread, my DH had lung cancer that spread to his bones. He also had to have a guided biopsy (ended up being kept in hospital overnight)

my best friend ‘kidnapped’ me and took me to the hospice, I really was a prisoner but actually they where so good for me, I could cry without it upsetting DH and talk about all my fears, they had support for DS. Unfortunately for us it was just as Covid started so lots of things stopped. He did have a months stay to get his pain under control (which they did) whilst he was still reasonably well, I remember getting a phone call to say they’d ‘lost’ him, they’d suggested he went for a walk expecting him to just go in the grounds, he’d set off and managed a 3 mile walk in the area! They didn’t suggest That again 🤣🤣

we’re all hear to hold your hand x

lastdaysofaugust · 30/08/2026 13:29

I’ve been googling hospices and drawing a blank - the only local one is the one in our hospital and while individuals have been helpful the overall picture has been well, a bit crap really. Certainly can’t see anyone coming to support us at home, and DH would be unlikely to accept it anyway.

Willowkins · 30/08/2026 13:40

Hi @lastdaysofaugust Welcome to our little club and sorry for the reason you're here. It's important I think to know that you're not alone. All these thoughts and feelings, that are hiding behind the facade, are ones we recognise from experience so take a deep breath and feel safe here.

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lastdaysofaugust · 30/08/2026 14:18

Thanks @Willowkins . It’s the worst, isn’t it? It isn’t just losing a life partner but it’s happening to you as well but you have no control at all.

Willowkins · 30/08/2026 14:54

No control but don't forget also trying to be strong for everyone at the same time. It's unrealistic to think we can pull off that balancing trick without some cost.
I think (part-time) work can be good - it saved me when I was going through this as it gave me something else to think about and I got a lot of support.

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thornbury · 30/08/2026 19:12

Hello @lastdaysofaugust and welcome. Plenty of support for you here. Your discovery of DH's cancer is similar to our situation, started with hip pain and turned out to be Cancer of Unknown Primary with widely disseminated bone metastases. He thought he'd hurt himself while running.

DH is still in hospital, hopefully home tomorrow. There is minimal staffing on Sundays and he couldn't see the nurse from Pain Clinic or the pulmonologist so not so much progress today. If they can get the pain under control, he apparently feels much better, if only he can stay awake long enough to notice! When he comes home, he will still be moving very delicately and unable to walk far or to do anything around the house, which will bug him because he likes things just so and my standards are not as high. I am torn about going into work, I have always said if he is well enough to work (WFH), then he is well enough for me to work. Having said that, his WFH is now likely to be interspersed with long rest periods and we are both clear that he cannot manage to take the dog out for his lunchtime toilet visit.

@Hisredipad I am pleased to report that no hospital chair for me - I have a nice padded bench with cushions (wipe clean pleather, but still) and I could even lie down on it if I wanted! One of the benefits of being in a private hospital.

bookwormcrazy · 30/08/2026 20:19

I could not recommend a hospice more, even if they are just supporting you at home. They have given me such a huge and personalised amount of support over the past 2 days. They might be a bit elusive before it really is time you need them but when it comes to the crunch I cannot fault them.

Unfortunately my husband is at the end. He has declined a significant amount and so fast in the last 2 days. His 6 1/2 year fight is now over and he has been given all the meds and sedation to keep him comfortable. I think it will be a surprise if he makes it through the night.

lastdaysofaugust · 30/08/2026 20:43

@bookwormcrazy i am so sorry. May he and you both have some peace in his final hours Flowers

notapizzaeater · 30/08/2026 20:53

((Hugs)) never a good time but for my DH it was a bittersweet release x

Willowkins · 30/08/2026 22:03

@bookwormcrazy sending you a handhold while you go through this last stage

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Evenstar · 30/08/2026 22:07

Wishing you strength and peace for the end of the journey 💐

bookwormcrazy · 30/08/2026 22:24

Thank you everyone. I have been sent a “watcher” as I have barely slept for 2 nights. He has kicked me out upstairs to bed with the dogs as he is not a dog fan, but on the understanding he gets me if anything changes. I’m not sure I like this but I do desperately need some sleep.

BIossomtoes · Yesterday 14:25

Sending you all love @bookwormcrazy. So very tough for you. You’re in my thoughts.

I feel a bit fraudulent posting here now but I have to update you. Mr B is being discharged on Wednesday all being well. Just 13 days after his transplant surgery. The new liver is making itself at home and is working hard on his behalf. The bump in the road last week was exactly that and resolved very quickly.

Our gratitude to the donor’s family is infinite. There will undoubtedly be more bumps in the road and consequent bouts of anxiety but the news is positive now. It makes me feel so much for those of you facing appalling outcomes. I’m sending you strength. 💐

Willowkins · Yesterday 18:23

@BIossomtoes please don't think that for a minute. The truth is that your news gives hope and light in what would otherwise be a very dark place and we're genuinely happy for you.

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