Incurable cancer

Hi  and welcome to the Online Community, although I am always sorry to see folks finding us and so sorry to hear about your diagnosis.

I would be calling your clinic to find out the next steps. A cancer diagnosis like this does bring a lot of confusion, stress and many questions but talking with other people who are on the same type of journey helps a lot.

The Community has various support groups so can I direct you to our Living with incurable cancer - incurable patients only group as this is the place where you will connect with others walking the treatment journey both as patient or family.

Follow the link I've created above then choose ‘click to join' when the page opens.

You can then introduce yourself and post questions selecting '+New' or '+' (depending on your device) you can also join in with existing discussions by clicking on 'reply'. 

It’s always good to talk - our Macmillan Support Services provides lots of ways to connect. The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00. Clicking here will give you more information.

You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

All the very best.

Hello Misjudged,

Many of us here have felt a bit abandoned having been told we're incurable. 

I suggest you get in touch with your allotted nurse at your hospital and ask here what you can expect to happen next.  For my part (oesophagus), I was told that I was incurable but I would "see" (i.e. nowadays a phone call, I suppose) my Oncologist approx three-monthly and have scans 6 monthly.  II suspect that's the common procedure.   When there are changes, which of course can only be for the worst, then I will be given appropriate palliation.

All this was a couple of months ago for me and I had,  stupidly, somehow expected that I was going into some sort of recovery, so it's been difficult for me to accept. 

Getting on with the housekeeping of sorting our your paperwork for how you'll be leaving things for your family, etc. can be a necessary occupation for a while.  Join the Incurable Cancer group here where you will find lots of diverse experiences recounted and people are helpful in answering direct questions -  though each in our own way were are moving along inexorably.

The Lung Cancer group will help with particular issues about your illness.

Very best wishes.

Thanks fortie 

Still trying to come to terms with it all as I'm still working as a hgv driver and don't feel ill  

hi misjudged, sorry for the delay, but I am having so much trouble with this new site.

when I was diagnosed back in March I felt exactly the same I spent about 8 minuets with my consultant and sent for bloods that was the last time I saw my consultant until 2 weeks ago, so I suggest you ring your consultant and ask for a face to face consultation, or at the very least a telephone call, you need answers and you are entitled to be treated as a human being not an incurable, I rang my consultant after about a month as I had heard nothing and she did get back to me, although this shouldn't be up to you to chase them it won't hurt, pick up the phone and get the ball rolling.

it was my perseverance that got me a 2nd CT scan and treatment, so push, push, push

good luck

devon cat