Is it near the end?

This is my first time on here & it brings tears to my eyes reading everyone's stories & my heart goes out to you all. 

My mum was diagnosed with terminal NSCLC with mets to the liver on 15 November 2021 (she was originally admitted to hospital for abdo pain so had a scan of her stomach which showed the bottom of her lungs) they then did a full chest X-ray & ct scan. The doctors diagnosed mum as having lung cancer with liver mets & that she had months rather than years left. They discharged her from hospital that day & she had to go back a few days later for a bronchishopie that has confirmed that she has NSCLC & that there's nothing they can do for her. The docs have said that they might be able to offer immunotherapy at some point but at the moment she's not fit enough so they would review her in a few weeks. 
She is now on her 2nd hospital admission since then. Initially  they said she had pneumonia as she was showing high infection markers she also had a blood transfusion as her HB was low along with low sodium levels & on o2 as her saturation levels wer low, the oncologist felt it was the cancer causing her symptoms & doctors decided to discharge her as she just wanted to be at home with my dad (as he has pancreatic cancer & is awaiting his operation).

Mum was home for 4 days before she was admitted to hospital again as we couldn't control her pain & she started to cough up blood, they have put her on 40% oxygen as her saturation levels were so low, her HB & sodium are still very low.

We all feel like we are going around in circles & have no idea what way to turn. We are not really getting any direct answers from the doctors mum is very distressed being in hospital. Yesterday my mum & I had a long chat with a doctor who has agreed that maybe it would be best if mum comes home with palliative care & has now done a TEP from for DNR, non admission to hospital & no IV antibiotics (as her veins keep collapsing).

Mum is in quite a bit of pain mainly upper right abdo & back she gets very tired easily & sleeps a lot but insists that she's not sleeping very well, she's been incontninent a few times & hasn't realised she's messed herself, she's lost a lot of weight & not eating or drinking very much, she struggles to have a conversation & gets distracted very easily she's very confused at times & miss understands what what she's being told, (she phoned a little while ago & said she's being discharged today, upon speaking to the hospital they are getting everything set up so she can come home but it probably won't be today).

Im really scared for my mum I can only imagine what's going through her mind I know she's scared. I want to make the most of the time we have left but am also dying inside watching what is happening to her. We have no idea how long she has left we all want as much time as possible but also don't want her to suffer. 
 

any advice tips or even what to expect would greatly received.

xx

 

  • Hi Sherry 

    I'm in a similar position. My dad was diagnosed with cancer at stage 4 and has been in hospital for a week now. My heart is breaking, I struggle watching him deteriorate, he is bedbound now and struggles to have conversation. I'm finding it really tough and worry about how he must feel and what's running through his mind. 
    I feel so alone but using this forum you realise how many people are going through this 
     

  • Hi there

    I'm so sorry to hear that your mum has had the worst news ever it's horrendous and very scary.

    My husband died in October, diagnosed in late August lung cancer which had spread to various sites in his bones.We thought it was a sore back and shoulder from the big dog pulling the lead, how very wrong we were.

    The disease is evil and it takes our loved ones in a terrible way, and unless you have witnessed a loved with it you haven't got a clue that's for sure.

    Just make every second count albeit with tears in your eyes and your heart breaking and just be there for her.That's all you can do but remember and look after yourself too, go for a walk do something for yourself and don't ever feel guilty for doing it as you have to cope when it comes to the end.

     

    Take care 

    x

  • Hi I'm Rachel. Reading your comment really got me I lost my dad 2013 21st Dec aswell. I wished I could punch cancer. He had prostate,secondary bone cancer then spread bladder/bowel spine. 7 year he fought.  I'm sorry to hear your family are going through this devastating situation.Now I'm not knocking the hospital as such but everytime he was admitted he ended up worse in distress. You say she is pain and her veins keep tissueing I presume this when they canulate her could she not have inter muscular injections or patches. Has she got a socail worker allocated. We had our home adapted for my dad. It horrendous that your not getting full support and heartbreaking that your poor mum is in so much pain well everything your going through I wished I could think of more things to say to help. I dont want this to be took the wrong way but could she go into a hospice my dad used to go in for a rest as it  helped us we nursed him see yook alot to get all the right things put in place but McMillan can get you amazing help I hope I'm not patronising you.  I hope you can get more support they put my dad on the  end of life pathway 3 times but he hung on. It's hard to go through this but try not to distress yourself xx