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Life expectancy- stage 4 lung cancer experience

30 Oct 2018 18:43

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

Life expectancy- stage 4 lung cancer experience

1 Nov 2018 19:38 in response to Limafoxtrot

I just wanted to stop by to say that I found your story so inspirational. What a lovely way to make the most of the precious time you had with your mum. I'm sure many others going through a similar experience will find comfort in reading your story so thank you for taking the time to share it with us

With very best wishes

Moderator Sarah

Life expectancy- stage 4 lung cancer experience

1 Nov 2018 20:57 in response to Limafoxtrot

Thank you so much for posting this. My best friend is stage 4 (diagnosed mid September) and can’t have treatment because of her medical health. She’s on oxygen 24/7 and isn't really eating but is bright enough in herself. I feel so ineffective as she’s very strong and we are all trying to make memories for her grandchildren and family/friends. I have no idea how long she has left but the hospice nurse has said maybe Christmas - she so wants to see her grandchildren open presents and I’ve said to her daughter if we need to bring it forward we will so it was lovely to read about your mum’s Christmas. 

She was very lucky to have you all so attentive and to pass surrounded by love. Thank you for sharing and I wish you all well in the time to  come xx

Life expectancy- stage 4 lung cancer experience

3 Nov 2018 23:41 in response to Limafoxtrot

I’m so sorry for your loss.  I keep crying on my mum and behaving like a 3 year old - I’m 48 - I feel terrible for doing it ... I guess either way we don’t feel good.  I am happy you created good memories I will do the same xx thank you 

Life expectancy- stage 4 lung cancer experience

28 Feb 2019 00:35 in response to Limafoxtrot

Hello,

Thank you for your post.

It touched me xxx

My Mum has been diagnosed with stage 4 lung cancer. They cannot treat her to due her varying levels of confusion.

Somedays she is great and others not so good.

I want to bring her home and spend all the time we can together making memories.

I will update our journey and share all our great times.

 

Thank you again.

Life expectancy- stage 4 lung cancer experience

21 May 2019 18:53 in response to Limafoxtrot

What a intimate and heartfelt post. 

Thank you for sharing your story. My dad gets his results this Thursday 23rd May. I’m keeping every bloody thing crossed that his hot spots on his sternum and lower lobe left lung shadow is not small cell cancer. I really appreciate the honesty of your journey with your mum BLESS YOU

Life expectancy- stage 4 lung cancer experience

21 May 2019 20:26 in response to lisavp

Thank you everyone for your responses.

my thoughts are with you, I hope you get the results you want xx

Life expectancy- stage 4 lung cancer experience

12 Nov 2019 17:51 in response to Bronbronnie

My mum was diagnosed last week... confirmed on Friday and I am in bits. Her planned PET scan was cancelled as in further reporting she already has liver metastasis so stage 4 but having a bronchoscopy tomorrow anyway. She in remarkable health considering.. it was an opportunist chest x ray for a  persistent cough and not symptomatic in any other way... but I am in bits. Grief is new to me... and fear... and overwhelming sadness keeps hitting me in waves. I'm not ready to lose her ..I am 51... and she's so full of life I just can't deal. I'm sitting in a train in my journey home.. I live a distance from her but am juggling my work to allow me to be there as much as humanly possible and my brothers and my daughter are tag teaming her investigations as they are closer . I am just so lost already... trying to be normal and carry on as if  there is no major elephant in the room and I just can't. 

Life expectancy- stage 4 lung cancer experience

20 Nov 2019 23:19 in response to MrsFluffybunny

Relate so much to your post. Found out my Dad has advanced lung cancer, due a bronchoscopy next week. Also new to grief, very blessed to have had him for my 47 years. He told me I have to be strong for him, he doesn’t want to see me upset. How the hell I’ll find the strength I don’t know, but I have to for him. Sending you a big welsh cwtch. 

Life expectancy- stage 4 lung cancer experience

14 Jun 2020 09:36 in response to Limafoxtrot

Thank you for sharing your story with us, a lovely thing to do with your mum. My mother in law has been diagnosed with stage 4 June 12th we were told 5pm Friday evening so still a lot of unanswered questions Sad her lung is full to the top with fluid so will be drained Tuesday so hopefully she will be more comfy. We know it has spread to her Liver it's It’s just so sad completely shocked us all.

Thank you for all sharing your stories ❤️

Life expectancy- stage 4 lung cancer experience

14 Jun 2020 12:14 in response to sarah-13

So sorry to hear this. My only advice is to do as much as you can, as soon as you can whilst she feels able. We found comfort in doing as mum wished and had an open house for visitors. She got very tired very quickly. I imagine all you are doing now is trying to work out if there is anything you can do and if not, the golden question of how long. Be blunt with the Macmillan nurses, ask all the questions you can. If the doctors are not answering your questions, stamp your feet a bit. Sometimes they are vague and 5 minutes a day just isn't enough. They stopped medication of my mums once and me and my sister locked myself in their office until they explained why (it was accidental!) and they administered it. Family knows best. Feel free to talk to me if needed. I obsessed over this forum but I really needed it at the time xx

Life expectancy- stage 4 lung cancer experience

26 Jun 2020 07:47 in response to Limafoxtrot

Thank you for sharing your story. It has helped me. Mum was diagnosed 2 years ago with lung cancer. They were not going to do any treatment as mum has other various health issues but she told the doctor that she was not ready to die! So they have her one bout of targeting radiotherapy and it worked!. Fast track to February this year. Mum was losing a lot of weight. I hadn't noticed at first as I am with her all the time. Her voice had gone really quiet and you could hardly hear her. I thought this was a side effect of her Parkinson's. We had 5 letters cancelling mums cancer review with the cancer nurse. I contacted the Parkinson's nurse to see about mums voice and that maybe her meds need changing and she came out to visit mum. She said in her voice had nothing to do with Parkinson's as it sounded too hoarse. So I contacted cancer nurse. By this time covid had hit so nurse wouldn't see mum so I asked if she could have a CT scan. Following week she had one and on 5th May the doctor called me to say mum has 2 to 3 months at the most. I am heartbroken. I am looking after her myself and every day can be a challenge. She is so frail but is a fighter.  We have just celebrated her 81st birthday with a social distance garden party with her sons and their families which she enjoyed. In a way I am sorry the doctor gave us a time frame as I am on a count down now. 

Life expectancy- stage 4 lung cancer experience

28 Jun 2020 00:32 in response to Limafoxtrot

Hi friend. Just read your message , what a fantastic person you are just reading this brought tears to my eyes. I hav only been on this site for a couple of weeks or so but i am so thankful i did as the people i have come across and their courage and strength just shows what we can do if we all talk and come together and not let this horrible c word take over our lives..i wish you and your family all the very best.xxlgod bless.xxx