Little introduction

Hi Mordred, Welcome to the Group. I can see you are at the angry stage! There are many stages to work through on this roller coaster that is cancer. I've just welcomed Sparks to the group also, so maybe with being at a similar place in your journey, you could help one another. At the beginning of an incurable diagnosis your head is all over the place and at the moment Covid isn't helping. Please don't think you have been forgotten, tell them how you feel and ask if there is anything you can try. There are some great new drugs here that were unknown and unlicensed even 4 or 5 years ago. If you see the palliative care team, ask them or ask your GP. These days you have to fight for yourself I'm afraid if your oncologist doesn't. You are entitled to a second opinion and whoever you see may have some ideas. Don't get angry, get active!

My sell by date passed long ago and I'm not alone here. I tried an untested, unlicensed drug, yes it had side effects but I'm still here to tell the tale!!

Hi all, especially the newbies, Incurable does sound hard to begin with and you are right it does seem to be an endless round of appointments etc but, it gets less and you will learn to live with it and accept your new normal eventually. You and we are all living with cancer not dying with it! My incurable diagnosis has been changed to inactive cancer, it might wake up one day, I take the medication every day and for now it’s in a deep sleep. There are as been said lots of us exceeding all expectations and boy are we all pleased. In the early days we would have felt devastated just like some of you are now but I promise it does get better and your mindset changes. Often the side effects of treatment make you feel worse than the cancer did but over time they seem to improve as well.                               So I just want to say welcome and be patient we will do our best to help any way we can and we will listen we hope you will be able to laugh as well before too long. Anyway I have managed to get on here a few times today after I changed my password again so hopefully the sites ok again now.                                                   Love and hugs to all.                                 Maggie xx

Thanks  Maggie. Still in limbo. Incurable. The liquid morphine helps! X

@Mordred I suppose I don't feel either sidelined or forgotten. Yes at first I was angry, raging at the future I felt had been taken from me when others seemed to carry on oblivious to everything. Also the 'why me?' thing I didn't feel I deserved this outcome but as time passed I changed. My friend Daloni said that after diagnosis she had spent too much precious time dying and not enough living. This really resonated with me. I am 56, there are others on here much younger with young children. I won't get to see any grandchildren or my kids get married unless they hurry up! But at least I got to see them into adulthood. 

I have a very supportive local hospice, I am still getting palliative treatment, although it won't cure me I get a bit longer to live. I do have family and I am bloody determined to enjoy every sunny day, every gin and tonic, every flowering plant, bird song and as much laughter as I can fit in. I am only human, I do cry and have wobbles but I refuse to let cancer take away any more than it already has. 

Thank you for your message I need reminding sometimes of these things when I am feeling sorry for myself 

Ruth 

Hi there you are spot on with your comments you do tend to forget sometimes what you have now when you are in a dark place as I call it and it's so often the case you forget the simple appreciations of life like bird song etc I grab those moments with both hands and yes important don't let the cancer take any more away than it has already take care 

Hi ,

I'm sorry that you have ended up on this group but as the others have said you are very welcome.

When I was first diagnosed I was told that my cancer was terminal.  I spent quite a long time believing this and initially it was a real struggle.  I spent a lot of time crying, angry and feeling sorry for myself.  I then realised that I needed to start thinking about my son and child and that helped me to start moving forward again.  After a while I was advised that the person who told me I was terminal was incorrect and using outdated knowledge and should have kept his mouth shut.  I was in fact incurable as my cancer was treatable.

I appreciate that this is not the situation in your case but as most people only cope with my treatment for a couple of years then my options were severely limited.  Over the years since then I have remained on the treatment and other options have been developed.

I have talked to many people on the site with other cancers including others who were told that they were terminal with lung cancer.  I think that whilst they all accepted that they had a cancer in them what they did not accept was that this was going to stop them enjoying themselves.  They have used the diagnosis to motivate them to do things that they had been putting off, as if not now when?  I have enjoyed trying a few new things and certainly carried on doing the things that I did previously.  Holidays, theatre, parties, meals out, meeting friends (regularly), joining a choir.  Others have got pets, started hobbies and crafts, studied or taken up meditation.  As people become more limited they adapt, electric bikes, powered wheelchairs, cruises rather than walking holidays, reading via a tablet, audio books.  It is still possible to find enjoyment in things.  We are all dying, it is just that some of us have been told it might come a bit quicker than previously anticipated.

No one is saying that you have to be cheerful all the time or the life and soul of the party but if your time is limited then perhaps think about how you want to use it.

I think that all of us have the hope that a cure will be developed and for some this does happen.  The people who trialled the drug I take would have expected to die within 18 months before joining the trial.  There are several people who have moved from palliative to treatable.

You might want to try talking to your GP or the Macmillan helpline (0808 00 00 00) to see if you can access counselling.  Your GP can also prescribe a short course of medication if this might assist.  The Macmillan helpline can assist emotionally but also practically, they helped my with my early medical retirement and claiming life insurance and benefits and I highly recommend them.

Once people have got over the initial shock they sometimes find meditation or mindfulness helpful.

I believe that someone else mentioned second opinions and trials.  You are certainly entitled to a second opinion and could ask your GP about this.  The Cancer research UK website can probably indicate who the lung cancer specialists are and they are also a good place to find out about any trials being run currently.

I hope that you are starting to get you head around your situation now and starting to find your way forward.  Please feel free to come back either for a chat, a rant or to find out any specific information.

All the best,

Gragon

Hi ,

It's good to see you on this group.  I hope that you are coping a bit better with the side effects of the treatment now.  Sometimes they can be managed better with experience.

I hope that your appointment next month goes well,

All the best,

Gragon