Mum 64, NSCLC 9cm tumour over heart, inoperable diagnosed September 2012 given 5 to 6 months

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Mum 64, NSCLC 9cm tumour over heart, inoperable diagnosed September 2012 given 5 to 6 months

Is there anybody that can give me an idea of what to expect now that mum is palliative, has all over body pains, new and changing almost weekly, weight loss and eating still but little and not often, mum is still fairly mobile, but is becoming physically weaker by the week, sleeps a lot of the day or is resting a lot. Lots of depression and pain! She wants to go places and do things but her body punishes her when she tries! We want to know about the progression and and idea of what's coming!
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

I cannot offer any suggestions or information .I just want to say that I'm sorry that this is happening to your mum and can only imagine how you feel .
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

Thankyou for the kind words.
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

Hi Sal First of all, I am so sorry to hear of your news. My mum passed away from breast cancer after a 3 month prognosis in August last year. One of the most devastating things is that our family wasn't the first and won't be the last to feel such pain, so my thoughts are with you and your family. I understand your desire to know what happens next. My mum and I were both very much like that too - very organised. I recall mum often saying, "they said three months, its been one and a half and I'm still walking! what is this all about!" I guess it happens differently for everyone, and depends on a lot of factors - what meds your mum is on, and whether she is staying at home or going to a hospice. My first recommendation would be to talk to your palliative care nurse - our family always respected them for their honesty, and they really do know what they are talking about. How much do you want to know in terms of physical change? It can be a lot to take in at once, but I found knowing what to expect helped me. I just don't want to frighten you. Like your mum, my mum slept and rested a lot. This is often a side effect of meds, but my mum said she was "readying herself" or "packing her bags". It frightened me a lot when some days mum would only wake up for a bit in the morning or the afternoon. As the cancer progressed, mum was more and more tired. Towards the end, it was a blessing to have a conversation with her, or for mum to stay awake while I showered her. This is okay, you need to let her rest, and don't push her - your mum doesn't need anymore pain than she already has. In terms of pain levels, it does get worse, and as an onlooker its devastating. The fact is, things get worse. Have faith that there are tremendous amounts of medication out there to help. The palliative care nurse can help you with this - and really make sure your mum makes use of it. Sometimes my mum would be a trooper and say it didn't hurt as much as we knew it did - but again, the help is there. I guess the third thing that was a huge change for me and I can't really come to grips with still to this point, is the side effects of the really strong pain killers. One being the sleepiness which I mentioned earlier, but the other being kind of high. Mum started talking about funny stuff that didn't quite make sense, like dreamland. She told my 15 year old brother to "go to the girlfriend bank". You've got to giggle at that stuff with her, but its also heartbreaking because thats not something my mum would say. Its like she got delirious with the meds. This happened towards the end, and made me feel like id lost my mum before she physically went. The only advice I can offer you, is to not rush things. Don't feel like all of a sudden you have to be sad or be with your mum or that you need to squeeze everything in. Enjoy each others company - ask about weddings, pregnancy or girl stuff. Chat, drink cups of tea, and soak up what you need to from your mum. My mum and I had a bit of a tradition - drinking baileys on ice in the afternoon with a tiny snack (what you said about appetite is spot on). But try to make the most of the little things, as pleasures come hard to find when you're restrained to your bed, but you can make it a happy time too. Best of luck, I'm so sorry that this has to happen to your family. Be strong for your mum, and look after yourself. If you need anything I'm here. Emma xx
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

Hi Emma, Thankyou for your reply, and I am too sorry that you have lost your Mum. It sounds like you did have a good relationship and have some nice memories to keep forever. I appreciate the few things you said about the physical changes and the pain increasing. Since I joined this group, Mums pain has moved and the palliative nurse thinks that its now in her bones, but I dont think Mum wants to get a scan etc to confirm it as she hates going for tests. I havent seen Mum for a few weeks and even she herself says that shes getting weaker some days and resting more, although she managed to have a short walk along the beach the other day. I dont mind hearing about different things that happen as the time will go on, because I like to be prepared, I am a bit of a control freak and its not helping that I have no control over this. I guess I am too wondering how long she may be bedridden for and also if morphene means the beginning of the end. Atm she is on oxycondone but she sees another palliative dr on Thursday and seems to think that he may change her meds again, but dont know what comes after it.
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

Hi, Firstly so sorry about yr mum. I can relate to what yr going through. On 21st January this year my mum was diagnosed with nsclc stage 4 and its gone to her bones in al least 5 places and to the adrenal gland. It's such a horrible disease and I'm still in shock that I have to watch my mum go through this. Do u live near your mum? We are just trying to get mum out of pain and comfortable, and trying to spend time with her.
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

Hi Sal, first of all I am so sorry that your mum is going through this. My dad was diagnosed with advanced NSCLC in Dec, and it has been an enormous roller coaster ride. Like yourself I want to know what will happen as the disease progresses and I have found it very hard to get definite answers from the professionals. It's like they don't want to tell you how bad things will get. My dad is suffering at the moment, the cancer has spread to his bones and the pain medication is either not working or he is 'as high as a kite'. He was halfway through his chemo when the pain became unbearable and he has been in hospital for the last two weeks. I'm at a loss as what to do and how to cope and if we're doing the right thing. I find it hard to talk to people who aren't going through it as its such a difficult reality to understand. There are so many things you cannot explain. I'm new to this site and find the experience of others very helpful. I wish you strength and love at this time and enjoy every precious moment you have with your mum.
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

Sorry to hear about yr dad Krystal. My mums also got nsclc with bone mets. I know exactly what yr going through. My mums in a lot of pain and she's having chemo but considering stopping treatment as she feels she is over it. It's so hard watching a parent go through this. My mum has moved in with our family so we can care for her. I'm also finding mums very moody and has started to remove herself from social interaction a lot. She's still mobile and showering herself but I really have no idea how long she has got left. She has 7 different bone metS that we know of. This disease really sucks and it's so scary to think of what's next.
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Re: Mum 64, NSCLC 9cm tumour over heart, inoperable ...

I'm so sorry Wallyo. I can understand your mum wishing to stop chemo. I'm at that stage where I don't know if chemo is the best thing for my dad. He wants to do whatever he can to stay with us for longer but then he doesn't want to be in pain. The chemo is slowing down the lung cancer but the bone mets continue to grow. He has 8 mets and the lower back, hip is the one causing so much pain. We found radiation worked in the beginning but its not working now and the morphine isn't doing so well either. He is also starting to get moody but its understandable considering what they are going through. It is definitely hard to see your parents go through this and no one prepares you for it. It's also hard not knowing what's going to happen or how long they will be here for. Somedays you feel so alone even though your friends are their for you. It's such a destructive disease. I try to talk about normal everyday things with my dad so were not talking about cancer all the time and how he is doing. Try and keep your mum positive and do as much as you can while she's still mobile. My dad is in bed most days and you begin to miss the little things that they could do. Also as the pain meds increase you miss being able to talk to them as they just get drowsy and confused. It's really hard and like you I just don't know what to expect.
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