Life expectancy- stage 4 lung cancer experience

Thank you for your replies.

I used this forum to try and predict Mums life expectancy and reading through the posts really helped, so I knew I had to write my own experience on here.

Mum was diagnosed with stage 4 lung cancer on 13th June and died on August 15th. We did not find out what type of cancer it was as she had COPD, asthma, angina and it just wasn’t worth it. When we found out she didn’t seem hugely different than the other times she had been in hospital and the cancer was missed on so many previous scans, it was right by her heart and she always had chest infections so they assumed it was always that causing the dark blur. 

She was great, had to be on oxygen 24/7 and we wouldn’t leave her side but overall, herself! but then went into hospital as her sodium was low and caught shingles. I don’t think this had much of an effect on her timeline to be honest. About 10 days before she passed, she was more tired and confused. She then went to sleep and barely spoke from the Friday, she died on the Wednesday. The Tuesday before we washed her and she was lifeless. We stopped all medication and took her off her mask around the Saturday because she just couldn’t swallow. Signs to watch out for are confusion, being unable to swallow, becoming more tired and towards the end - the white fingertips. Everyone’s experience is different but Mums last 2.5 weeks were when she started getting confused and it went downhill from there.

She died peacefully cuddled up to me and my sister and I’m forever thankful for that. I think the anxiety of her passing at the wrong moment, without us, was the worst. 

I wish I followed my gut and left work sooner (I worked mornings up until the Friday before).

Mum wanted to celebrate Christmas early and although it was originally arranged for 11th August, we luckily moved it to the 15th July. It was great, she actually went 3 hours without oxygen (we didn’t realise!) and stayed out until 11pm. We are so lucky to of had that day, so many came and Mum was showed how loved she was whilst she was still here. I’d advise anyone to do this - build a memory that shows them going out with a bang. 

She lived with me during the last moments and my biggest regret is that I was too strong, sometimes I wish I cried my heart out and told her how scared I was to live without her. I wish she heard that from me but I know she knew deep down.

We’re lucky Mum was the strong little soul she was but I suppose that makes it so much harder without her.

The primrose nurses were the best people to get advice from, better than the doctors. Make sure everything is done how you want, you know them better than anyone else!

 

Hope this helps someone and feel free to ask questions. This forum helped me so much! Xx

  • Hi..my brother is sadly in his final days I believe. He was diagnosed last May 2020 and immediately started treatment, however the position of his tumour meant it was inoperable. He had immunotherapy, chemotherapy and radiotherapy at various stages. At one time we thought it was working as tumour reduced, but afraid it returned and has now spread to his lymph nodes and brain. Covid meant there were only a few times during the year that I could see him at a distance and no hugs or kisses of course. But he has for most of the time been well and managed to enjoy a few interests. He has gone rapidly downhill since just before Easter when he had severe tremors down his leftside. That's when we were told it was in his brain. He is now on anti seizure drugs, and morphine and very tired unable to hold much concentration, and his mobility greatly affected. Thankfully says he has no pain. His Son of 36 cares for him at home and is doing amazingly well. The local Hospice is involved and also are brilliant. He has just recently unfortunately produced a bit of blood on coughing, not eating much or drinking water either  and all in all he has changed so much in the last two weeks that I fear we have very little time with him. I feel it's important to have people he loves with him now ..despite the Covid restrictions. We have already been unable to fulfill some of his wishes, like a BBQ at my house and getting him back out in the garden again with family as the lifting of those restrictions came too late. We are beyond the stage now where we have to protect him from Covid so in his end of life days he needs us and we need to be together. This Covid 19 has robbed us of so much family time that we will never get back. I know I'm not alone in my experience but sometimes feel so alone in my thoughts. God bless everyone who is affected by Cancer,  those diagnosed, their families, those hoping for the best and those bravely coping with the worst .

  • I'm so genuinely sorry for what you and your family are going through . I lost my husband in January, and my brother in February, both to lung cancer , The pain and suffering is emotionally draining, seeing them determined to fight to stay with us , making sure I was going to be ok , it breaks my heart . My husband and I, had a year of lockdown together, laid on the bed most days just cuddling, all our family came daily, it was too late to protect him from covid , My husband fought for two and half years , but looking back , he was not well before his diagnosis, but just thought , late fifties tiredness. He quickly deteriorated from Xmas day , stopped eating and drinking , couldn't take his medication, he fought and fought to stay with us , they gave him a driver on the 5th , but was still in pain , they gave him a second driver with methadone in , on the 6th , teatime.   On the 7th  my gorgeous husband was struggling for breath and gurgling, I asked my daughter in law , to help me sit him up , we propped him up , and he took three last sighs of breath and in that moment my world fell apart . I hope this is not offending anyone. I am struggling with coping, we had his funeral on the 25th , but my lovely brother was too poorly to get out of the car , he wanted to be there for me ,  exactly one week later , my wonderful brother passed , I think he gave up , when my husband passed . We have a wonderful supportive family, our sons and grandchildren are amazing, but I'm trying to act like I'm ok , I'm back at work part time, just to fill a few hours , because the rest of the time I'm cuddling my husbands ashes , I put them in bed with me every night.  Cry myself to sleep , I can't imagine life without him , I don't want to burden my family, they have partners and wives to talk to , so if I say I'm not ok , they get worried, . People keep saying it gets easier, but I miss him more every day. And I feel guilty because I haven't grieved properly for my brother, as the grief is all consuming for my husband . I love them both dearly, The loss is too much . I don't want medication , as people say I might need , I know this is a process, my tears just keep flowing, my heart is broken, I feel drained, I miss them both so much .   Sorry if I've upset anyone, it's honestly not my intention. 

  • Bless you ....you certainly haven't upset me although your story is upsetting and dreadfully sad. Our lives can sometimes deal us what at the time are unbearable challenges. And the problem with grief is although it's something we all go through we don't do it in the same way. I'm sure you will find your way through eventually. I do think expressing ourselves in this way helps, because as you say it is always difficult to open up completely to family. They too are going through grief and none of us know the best way to help. I'm trying to deal with my feelings as a sister(the only one who has been with him all his life) but also as an aunt who has been as close as a mum to his children since they were teenagers.  So we are always watching out for others feelings and trying to navigate a way through. Take care, and look after yourself, and I hope you find the strength from somewhere to build your life again for your children and the future generations because although it stands still for awhile, life does go on. I'm sure your brother and your husband would want you to find happiness again. X

  • Hi,i want to talk to someone who will be honest with me,my mum was diagnosed with stage 4 lung cancer 18 months ago, it was also found in her rib,she has had emunotherpy  and radiation,  she has been on morphine tablets twice a day and the oromorph when needed,we went to the hospital last week to be told it is now in her liver and is active( dont know what that means).

    They suggested she goes into a Hospice with the intention of getting her meds right so she has no pain.she is very stubborn and has not been telling them because she says they too busy and doesn't want to bother them lol.

    They have given her stronger oramorph but still she needs more,can any one tell me if we are coming to the end ?

  • My dad has just been diagnosed with stage 4 lung cancer. We've been told he has about 3 months left. 
    He is nearly 89. And like your mum has COPD and Angina and Diabetes.  He thought he had a chest infection and due to covid he had a telephone appointment. He had antibiotics and steroids. It ended up he had 4 loads of antibiotics and 3 loads of steroids and not once seen by a doctor until I phoned his surgery and asked them to go and see him. Doctor took one look at Dad and he was put into hospital with pneumonia. But it turned out to be Lung cancer. 
    I'm so scared for him. I can't bare the thought of not being with him because I don't want him to ever be alone. We lost my mam to Ovarian Cancer 25 yrs ago so he lives in sheltered housing and wants to go home there. I want to carry out his wishes and let him be at home but my brothers don't want him to.  I do feel because I'm the youngest and the only girl they think they can treat me like I'm 5.  Anyway I'm dealing with that part of it. And standing my ground and remind them that he is my dad too. 
    I hope you don't mind me asking, but how accurate were they with the timescale they gave your mum?  
    I'm really sorry for your loss. 

  • Sending all my love to you! Yes please keep pushing for your dads wishes to be met. It's hard with siblings. My mum was here for exactly 9 weeks xx