Mum has terminal lung cancer, Dont know what to expect

Hi I am new to this forum and have never done anything like this before, however I have no one else I can talk to without upsetting them.  My mum was diagnosed with Lung Cancer in 2013. It was Nsclc, Stage 3a. They said it was non operable but treated her curative with chemo radiation. Luckily the tumour shrunk and became operable. That was in June2014. She has been NED since. Two months ago she found a lump above her collarbone. the  Dr thought it was a cyst as she is fit and well and walks everyday. She has a lot of pain in her right shoulder and has done since the op so we put it down to that as did the Dr. Last week after some more tests we were told she has an aggressive recurrent tumour in her lung which has invaded all the muscle and  tissue  It is inoperable and no longer Curative. Any chemo is just life extending. We are all devastated and I am struggling to come to terms with it. When I am with my mum I feel strong and fine and enjoy being with her., as soon as I go away from her I fall to pieces and keep crying. I don't wanna feel like this and I don't know how to cope or deal with the situation. I'm fine caring for her but I also have 3 children. The worst part is not knowing if she has 6 months 8 months or maybe a year. It is awful living with the uncertainty and Knowing my mum is gonna die. She is only 66. I find it hard to believe as although her pain is so bad she is quite fit. I look at her and I think. How ? Any advice would be appreciated. I'm so sad

  • Hello Maria, 

    I'm so sorry to read about your Mum's diagnosis and it's understandable that you are feeling so shocked by this news. 

    I know that many members of our community would say try to just take each day as it comes and not look too far into the future. I'm sure that some of them will be along soon to offer their word of advice and support. 

    If you think it would help to talk to someone then we do have a team of nurses here that you can call to chat with. They are available Monday to Friday 9am to 5pm on 0808 800 4040.

    Please do come and post here whenever you feel the need to talk or to offload. 

    Thinking of you all, 

    Jenn
    Cancer Chat moderator

  • Hi Maria

    Welcome to the foru but sad to see the reason for you being here.

    My husband had a different incurable cancer (lung linings) but Moderator Jenn is right in saying that coping day to day seemed to work best for me and the family. He was 60 at diagnosis and received palliative ongoing care for his three year journey. You have the added responsibility for your children (mine were adult and had children of their own).  I was certainly fearful of the future but also as to how I would get through it.We 'managed it' as a family and as he did  not like to talk about his illness (too emotional) we tried our best to follow his wishes in keeping things as normal as possible for as long as we were able. There are so many emotions to work through but with support both here on the forum (so much understanding and kindness from strangers who I now consider friends), children and close friends plus the medical palliative care team and GP.community nurses (latter stages) we did our utmost to make memories to take forward, at the same time supporting each other and asking for the extra support as and when we required it.  I cenrtainly could not have managed alone.

    Sending you a virtual hug and wishing you a peaceful day. Jules54

  • Hi Maria,

    I just came across this post, though I know it is from August. I am in the exact same position with my mum, who has incurable lung cancer. She is deteriorating quite rapidly now, having been so strong throughout various clinical trials and other treatments. We still don't know whether she has 3 months, 6 months, a year or whether she might even be around for longer. However at the moment I am so terrified, I think she might not even be here for Christmas. 

    I am the same as you when I am with her I am strong and positive, but when I am by myself I have racing thoughts and anything can make me cry. I'm 28, I don't have a partner or any children, which whilst being a blessing I'm sure in not having to cope with looking after them, means I do not have much distraction when I am at home alone. 

    How is your mum getting on? And how are you coping?

    Anna x

  • Hi Anna, sorry to reply so slowly, things have been quite manic and non stop. I also am sorry to hear your sad news. I feel too young to lose my mum, and i think I would have been even more lost at 28.  It is an awful time and emotionally draining.  how are you and your mum getting on. So over the past few months mum had been having chemo but spent more time in hospital with infections than actually having the chemo. Eventually last month they stopped the chemo and the tumour was not responding to it and the chemo was killing her. She by then could no longer walk and lost so much weight and was becoming very confused, she couldn't even get out of a chair . It was heartbreaking.  We thought she would after stopping chemo get a couple of good months but no it has slowly finished her off. Since stopping chemo she has become weaker and can no longer use her right arm, legs have had it, she is confused all the time and she must be anorexic now, despite eating and drinking. When I first posted this I had no idea what to expect but ive learned don't expect anything because everyone is just so different. Some people  do  not get confused and weak or lose weight , my mum hasn't had any breathing problems which is a blessing as I don't want her to be distressed. Around 4 weeks ago the dr said mum had around 8 weeks left. Some days I see her and I can believe it and other days she seems better and I can't believe it. She is deteriorating rapidly now and I'm gutted and heartbroken. She said she wanted to visit the Scilly isles and I would of loved to take her but she is not well enough. I wish she had said no to chemo and spent her last few months doing stuff rather than suffering the effects of it. But what's done is done. I now just hope it is peaceful . I feel so broken and am so scared that I won't cope because  I already feel like I'm cracking. Im just gonna say it. It's just all really crap. Really really crap. No other way to put it. I hope you have some support around you and I'm thinking of you and your mum and your family, thanks for replying X 

     

     

     

     

  • Hi Anna, just checking in with you and wondering how you are and how your mum has got on. My mum died in my arms on the 17th December, she fought to the end and suffered immense pain for the last four days, the day before she died she was wailing so much and couldnt even respond when I spoke to her so I did just carry on talking to her but because she was wailing it was very distressing and I insisted they put a syringe driver in to ease her pain. I wish I didn't, within the day my mums lungs started depressing and she died while I held her. I'm so totally heart broken. How are you as you are even younger than me and I have my kids to distract me . X 

  • Maria, I am so sorry to hear that you have lost your mum.    I am pleased you were with her and were able to help with her pain relief.  I f she had not had the syringe driver she would have gone on being in pain and I am sure that isn't what you would have wanted.

    Give yourself time to grieve and know you did your very best for your mum. x