Lung cancer

Hello Darts. Everyone on here has asked themselves the same question but we all get through.

This forum has given me my life back, I have stopped the 24/7 worrying, all down to the support and understanding from the people on here. You will get plenty of answers too.

You may be asked to fill in some profile information so people with the same troubles can tell you their stories and how they managed.

Best wishes.

Hi Darts

Welcome though sorry you have had to come here

I never ever wanted to know my prognosis, and still don't,  every one has to do what they think is right for them.

When my chemo was finished and was told, it has not worked, i just said now what, another type of treatment, which was immunotherapy, which i had every three weeks for two years.

For me it worked but not for every one i am afraid.

You will get a lot of support from this group, we are all going threw a horrendous journey which we had no choice in. We have to have faith in our oncologist its there job to do the best for us and i am sure they do,

Take Care Ellie xx 

Hi and welcome to the group. I do hope your scan results are good. However if I were you, I would not ask for a prognosis! No one really knows anyway! My oncologist told me I was stage4 and my husband asked "that's not too bad then if there are about 12 stages" My oncologist answered "I'm so very sorry but there are only 4 stages and we would give Annette 5-7 months"! Now I knew how many stages there were but didn't expect my husband to ask! I was asked if I'd try a trial drug, I said I'd try anything. I've been so lucky, as said, the same drugs/treatment, don't work for everyone, but you can be the lucky one. I got my prognosis in 2013 so I'm well passed my sell be date! Good luck!

, Hi and welcome.

I have NSCLC stage IV as it had spread to lymph nodes and later brain. They did give me around a year to live. Well that was 5 years ago now, i'm still here and well alive. I always are very excited about new results from a scan ..as i want to know, because then i know what's happening and can go on with it. But still after such a long time, it's not easy..What sort of LC do you got? Mets?? Chemo did not work for me, but then immuno theraapy did. There are now so many new drugs, so don't give up so fast!!

Pet

PS if you find spelling mistakes, you can keep them!

Thank you  I have a large tumour on my left lung it's in all the nodes and on my spine. Like the rest its harder because you can't be with  family. I have come to terms with the end  but my children  can't that's what is so hard

Hello and another welcome to the group.

I am now classed as treatable but incurable but was initially told that I was terminal and like you struggled mainly with what my family would do and how I was letting down my son somehow.  I think no child likes to think of a parent dying no matter how old they are, it is a difficult thing to accept openly.  Perhaps the best you might accept initially is that they humour you and go along with your wishes to sort things out and discuss this with them.  However after that, for you as much as for them, I would suggest that you get on with living your life and enjoying your time with them and trying to give them lots of happy memories to remember you by.

Make plans to spend time with them doing things that you are still capable of doing that they will enjoy as well.  I don't know how old they are (another benefit of filling out your profile is people can talk more accurately about your situation) but if you can't be with them then facetime, skype etc but see if you can arrange something fun like meeting online for drinks or some other activity.  If you can get together then things like barbeques, walks etc are good.  It is all a bit more difficult as we are still in lock down but as this lifts then you will have more opportunities.  Do not avoid booking things in case you are not about.  If you have died perhaps whatever it is can be refunded or given to someone else.  If the date arrives and you would have been well enough to go you will be disappointed that you did not take the chance and book it.  Enjoy your life whilst you are still living.

Your family will accept your illness more as you become less able but might never be able to discuss this with you or say it to your face as they may feel that this is somehow a demonstration of a lack of faith.  Lots of people talk about battling cancer but the reality for me is that  I might battle the side effects of medication but I endure the cancer.  Nevertheless my family will not want to act in any way which they might see as undermining me.

If you have a Macmillan nurse you might invite your family to talk to them (after discussing it with the nurse of course) as they may be a bit more accepting of the information coming from someone else and feel more able to accept what is said.  If you have not got a Macmillan nurse or the equivalent then if you ask your GP or oncologist they can make a referral for you.

Wishing you all the best,

Gragon x

Thank you. At the moment I am trying to finish the house so there's lots to keep me busy I have just tiled the bathroom, can't get a plumber  need electricians, hopefully as lockdown stops the jobs will be done so my kids don't need to do later. All my plans for family holidays went same as everyone else. I wanted to make memories but with all this can't make new ones yet but they have years of good memories we are a close family and in a way I'm glad the grandchildren don't see me on bad days. I try and stay positive most of the time I just get days where I can't 

Having a good day today

Thank you 

I found out last week that I had moved from incurable to terminal  I have small cell lung cancer with mets to my bones, liver and now brain. It was a numbing blow. I have never asked for a prognosis and am trying to take each day as it comes. I find it So hard. I don’t have kids but am close to my sisters and their kids And have a small group of devoted friends- and I feel so guilty that I am putting everyone through this pain.  

Hi

I have never wanted a prognosis. I think it’s a finger in the wind in most cases as treatments are changing so rapidly these days we never know what’s round the corner. 

There have been times when a prognosis has been useful for a particular purpose, for example it was entirely clinically justified a few years ago for my oncologist to make the case to my mortgage life insurers that I had less than a year to live. The policy paid out. That was in 2016. Similarly, I am on PIP benefits under the less than six months to live rule, helped by my hospice. But new treatments have kept me going longer. I feel as though I live between the lines sometimes.

I am now getting to the stage where there’s nothing left to try. I’m on a last ditch attempt using a chemo I’m already resistant to. Apparently it might keep things under control for a while.

So I do try to live each day as it comes. By which I mean I look for the joy in each day. These might be small joys such as a nice cup of tea with the sun on my face or a phone call from a friend. Planning an outing even if I know I might not make it gives me something to look forward to. If I make it, great. If not, I still have happy memories of looking forward to it. It’s all a question of putting my head on the right way round. 

I find that meditation and daily exercise are crucial. My state of mind soon starts to slip if I try to leave these out. Sure there are days when exercise is not much more than walking to the end of the garden but I figure I’m still walking to the end of the garden and how lucky I am to have a garden. 

None of this is easy. Letting go of guilt is not easy. It requires some hard work. But it is possible. 

xxx

Hi

I am really sorry to hear your news. That is a devastating blow. It’s good to hear you are close to your sisters. I rely on mine more than I care to admit. My children are 16 and 19 and find my illness very hard to accept. My sisters don’t find it easy but at least they are adults and we’ve been able to talk and be upfront about how best they can help me. I’ve described it as walking alongside me. I don’t want to go on this journey but I have no choice and I would like them with me if they want to come. 

Having these conversations has been hard and often they have come as a result of more practical issues such as going through my will or appointing them power of attorney. These formal occasions of discussing the practical, legal details have opened the door to softer conversations about staying close. 

You are bound to feel guilty for putting family and friends through this pain. But do try to turn the tables and think how you’d feel if the situation were reversed and it was your sister needed help and support through a terminal illness. It can really help to do this. 

I find as I get sicker that I need more and more help. One of my sisters says I make it easy for people by asking for specific help, whether it’s with food or cleaning or days I need an adult in the house for the kids. I think she’s right and there’s something important about asking the right person for the right thing. It’s no good me asking a nervous driver for a lift into London for a hospital appointment for example. 

It will take time for your new situation to feel real. It always does, like waiting for a snow globe to settle.  I do hope that you’ll find your sisters and friends alongside you as it does 

xxx