Hi there ... so sorry you're having such a traumatic time ... how your Dr can leave you like that is (not allowed to swear on here)  you asked about mcmillan... I used to do volunteer work for them, and from what I learned, they do have practical and emotional help too ... and in the last few weeks my bro-in-law they came out twice a day, every day to help wash, dress, and make sure my sister was o. K..

Give them a ring tomorrow and write down all your worries so you don't forget anything ... and have pen , paper on hand for any advice, help they give you ... please reach out. I'm so glad I've not got your Dr.  Mine have all been amazing ... do you have oncology nurses phone number .. they should be able to give you more info too ...

You sound so lovely, I would have been screaming at the system that has left you in the dark ... have you got family or friends to help you through ...well be thinking of you ... sending you a big hug , brave lady ... chrisie   xx 

Thanks I did ring head nurse asked for copy of letter sent to my local GP 

all info I needed to know  said 6-9 months  I wanted  someone to call and  explain what end of life and inbetween would be like  was told McMillan nurse would ring but someone else can't remember who rang talked about a yellow folder no idea what that's about   and she said something about a district nurse   will ring McMillan myself  if they can't help I give up 

I want someone who has experienced people dying of cancer to call round and talk things over I'm not good on the phone  is this possible 

any one got any ideas  ?   

Ring McMillan if you have not heard from them yet.  Don't leave if to others (although they should have got their act together).  Now is not the time to show British reserve and not wanting to make a fuss.  You need and deserve help.  When you are thrown into unknown territory it is frightening but help is available.  Have you got family/friends to help you if you do not feel able to cope?   Use any resources you can lay your hands on. I hope you will feel less stressed once you have got the help that McMillan will give you.

Hi Colleen... don't you give up ... you are one brave lass ... but think you need to talk to mcmillan, on the phone as you the only one who knows you and your thoughts ... once you get the ball rolling, you will get the help and advice you need ... tell them all your worries as they have someone on the phone that needs to know who and what you need ... 

This cancer wants us to give up... it wants us to be angry and keep us down, Im not having treatment and I want to put two fingers up to cancer by living every day, long or short ... it will not keep me down, I may not win in the end but kick it's butt and I'll go down with a smile and two fingers up to that horrific cancer ... 

So you get back on that rollercoaster ride ... keep phoning everyone you can ... G . P / your oncologist team / mcmillan  (tell them you want to talk to someone in your home face to face) and once you know all you need to, live in the day... you can pack in lots of stuff you would like to do ... if you want to keep in touch, I'm on here most days .... you can do this ...don't give up ... big big hug chrisie xx 

Hi Chris 

thanks for your input it helped   have seen a district nurse who will call in once a month unless I need her sooner.  spending Christmas and maybe Newyear at my son/ grandsons   Hard to be comfortable anywhere from home  The left side of my face and throat was swollen three sessions of chemo  two months ago sorted it

but it's started swelling again does everyone have swollen bits of  their body left arm and breast as well   No pain yet thankfully

Hello Colleen; I don't have the experience to answer your question about the swelling but someone who can give you the benefit of their experience will probably be along.  I am really just writing to say that if you are not comfortable away from home then perhaps you should consider going home!  Your son will surely understand this.  I don't think you should be spending your precious time doing anything that causes you problems.  Lots of good wishes to you.