I'm scared

Hi Den64 welcome to the group but sorry you have had to join us here. 
I think planning your funeral and writing a will is important for everyone, not just us incurables. I had a friend who passed away very suddenly at the age of 50, and her husband was so upset about the fact that he just didn’t know what her wishes were, as they hadn’t even discussed it. It is good to write the will, plan the funeral, then forget about it, it’s done and you don’t have to think about it again. 
I can understand how scared you must be about treatment stopping, is there any reason why you think that may happen for you or are you just worrying that it might? Maybe you need to talk to someone about your worries. Do you have a maggies centre near you ? They are usually close to the hospital. Or you can call the MacMillan support line on 0808 808 00 00.

Some people in the group have joined groups via their local hospice. The hospice is there to support you to live as well as possible with an incurable disease. They have lots of activities daily that you may be able to attend where you can meet other people who are in the same situation as yourself. This may be a good idea if you do not have a maggies centre near you. Your GP has to make a referral for you. I myself did physio at my local hospice and was surprised as it wasn’t what I was expecting at all. 

Im sure others will be along to welcome you to our group soon. There is usually someone here to chat too. 

Hi@ Den64.  It is scary, particularly at the beginning of your cancer journey.  I was terrified that I had nothing in place and simply wasn't ready.  As chellesimo  has said, having plans in place is so important.  It allowed me to sleep at night again and stop thinking about dying; now I concentrate on living as best I can.  The focus is on what I can do, not worrying about what I can't.

Some of the treatments can be rough, but worth putting up with the side effects when they are working.  I had good results initially.  My tumour is now classed as stable, which actually means growing slowly. I can't answer your question about the treatment stopping working but I know it will happen sometime and I don't worry about it, no one knows how long they have really.  I should add that I do know what is likely medically, my oncology team put me in touch with the local hospice and they have been here to see me.  You can always ask for a referral, it might help.

You are not alone here.

Thank you Chellesimo for your supportive response. I will try to only concentrate on what needs to be done .

Thank you SandyN for your supportive reply. It's so scary when you're on your own, feeling that you have to think about yourself.

It’s scary being diagnosed with incurable cancer and it does take some adjustment. However many of us live fairly normal lives for quite some time despite being incurable - I have been incurable since 2022 and have at least for now a stable remission. So unless you have been told you have only a short time, it may be just as important to plan for how to live well and enjoy the time you do have.

Planning for later is worth doing. As well as getting a will sorted out, it’s worth putting a lasting power of attorney in place, assuming you have trusted family or friends who are able to act on your behalf if it becomes necessary. You need 2 of these, 1 for medical matters, and 1 for financial matters. They can be completed online then printed off for the various signatures. You also need another person, who knows you, but isn’t a named attorney to confirm you are not being coerced into doing it. It’s straightforward but there is a delay before they are registered and can be used, so important to do whilst you have capacity. It’s also useful to document what you want and don’t want to happen, there are various ways of formalising this, but the simplest is to talk it through with your attorney(s).

If and when treatment stops working, there may be other treatment lines to try. I know someone with secondary breast cancer on her 17th line of treatment! I also have secondary breast cancer but unfortunately of a type with far fewer treatment options. I guess we will all reach the point where we either run out of options or decide the side effects are not worth it for the benefits. At that point you would need to have palliative care in place and as others have said, contact with a hospice is helpful. I haven’t investigated that as my need doesn’t seem imminent, hopefully yours isn’t either.

Personally I haven’t worried about funeral plans. I have no religious faith so once I have gone I believe I am gone. I have however attended a friend’s living wake, where he was able to get everyone he cared for together a couple of weeks before he died. I thought that was a fantastic idea and will do something similar if my circumstances allow it.