Devastated

Hi Serina ,

  Welcome to the board and I'm so sorry to hear your news.  I have a team of nurses (I'm based in South Wales) and a keyworker that I can call.  If you haven't had any information like that then I'd get in touch with the hospital and ask them what the plan is, I would personally be polite but very firm. 

In our local cancer centre (Velindre in Cardiff) they have mental health support through Maggies.  Maybe you have a Maggies in your local area that you can get in touch with as I believe they also have the Maggies centres in local communities?  Others may be able to offer more specific support with regards to who to contact. 

The only one tip I can give is to take each step at a time.... that's the way I've been managing.  The first step, based on what you've said above, would be to get in touch with the hospital today and ask who your care team is and then get in touch with them to ask what the plan is.

I hope you get some answers quickly.

Sending you good wishes.

Cerysm.

Hi Serina,

I would echo CerysM and say the hospital has a duty of care towards you regardless of the prognosis. I too am incurable with no active treatment other than monitoring scans but I maintain a dialogue with my care team. I have also found engaging with various national and local cancer support groups has helped. I also self-referred to my local hospice which brought in further support, although I’m not intending on leaving just yet.

People view the world in different ways but for me I found my prognosis has brought empowerment but empowerment also requires acceptance. But none of that means you stop living, quite the opposite. Get some good support in place (your local surgery should have a nominated cancer GP and may be even a specialist nurse) and go out and live! I’m off this evening to a Fire & Feast event for pizza round the fire pit in some local woods, organised by a local cancer charity support group.

Again, echoing CerysM start with the hospital and your local GP surgery re a care plan and take it from there.

All the best.

Maninbath (Tom)

Hi Serina 

I think you should give our helpline a call . 0808 808 0000.

You definitely need support or know who to turn to . It is very hard to tell on a forum how big the spread is in each area and how compromises that is to your current health . My own mum dealt with a spread for 15 years and showed up in a few locations but did not start to limit her life until it reached a tipping point .

Are they planning on referring you to an oncologist? 
Our helpline staff could get one of the nurses to speak to you . Please do give them a call ,

Court 

Hi Cerysm,  thanks for replying.  I've got the number for the Colorectal Macmillan nurses but that's it.  There are four of them but when you phone you get an answer phone and have to wait for them to call back.  I have no contact with the oncology team at all and that is what is lacking. I'm going to call them tomorrow.  I feel that once I know if I can have chemo I can start to deal with things. This limbo land is too much. Thanks for your advice. Xx

Hi Tom, thanks for getting back to me.  I still haven't been told whether I can have chemo yet. I think when I have that information I'll take your advice about contacting other groups... maybe there's one near me.  Hopefully that'll make me feel more positive and at peace with things.

Thanks again for your help.

Serina

Thanks. I think I'll do that. X

If things don’t move quicker for you there is Pals who will raise the question on your behalf .

take care ,

Court 

https://www.bowelcanceruk.org.uk/about-bowel-cancer/advanced-bowel-cancer/about-advanced-bowel-cancer/

This is quite a good read to show various treatment approaches even with a spread .

Court 

Hi Serina,

 The Colorectal nurses are my key workers if that's any help, I always have to leave a message if I have a question but my team do get back to me, mostly the same day as well.  If I were you I would definitely give them a call and ask the plan and who else you can contact. 

Good luck!

Cerysm

That's a great read. Thanks.