Hello lisals, I haven't got the same type of cancer that you have got, and I can't really give you any advice, but I Noticed that you have not had any replies and I just wanted to let you know that you are not alone.  Have you  tried asking your MacMillan nurses for advice on how to  cope with your particular type of cancer?  Good luck mate and let us know how you get on, x

Thanks so much for replying!  That's so kind, I was feeling a bit lonely out there in the www!  My CNS is attacking it from the treatment side rather than symptom, which is wait and see what the chemo does.  Trouble is the chemo doesn't seem to be doing much and they've already had to reduce it to 80% to avoid hospitalisation after I have it each time!  I'm gonna ask about Ekectrochemotherapy, something the nurses on here sent through a link about and see if that's an option!  My face is literally melting away!  I look like a villain from a Marvel Comics Blockbuster!  

Are you happy to talk about your cancer? I wonder how you're doing?

I rang the nurse line before posting this, tbh, she just kept saying she didn't really know much about it.  Your links were fab though, I've emailed my CNS and asked her if we can table it for discussion at my next treatment day.

Thanks so much ...and lovely to get a reply.

Lx

Hi Lisals, yes I am happy to talk about my cancer.  Well, I have had breast cancer twice, and it was in remission for quite a while but I was recently told that it has spread in to my lymph nodes and my lungs.  As ypu probably know, this is stage 4, and at this point I can not be cured, I am now in the palliative care stage.  I must say that I don't actually feel ill.........I mean, yes I get aches and pains and I sometimes feel nauseous and very tired, but I am still able to take care of my husband who is himself dangerously ill, and I am his carer.  We don't have children, in fact we only have each other and my biggest worry is what will happen to him if I go first, but of course, I know that the best I can do is take each day as it comes and TRY not to worry too much about the future.  I really hope you get the help you need lisa, it sounds like a nightmare what you are going through, and I am sure that other folks on here who are going the same thing will give you some good advice.  Please feel free to speak to me whenever you want lisa, good luck mate, Violet, xx

It's so strange to be told you're dying when you don't actually feel that physically ill.  Don't get me wrong, I'm not planning on going hand gliding tomorrow or for a run but apart from this great lump on my face, the rest of me looks and feels quite healthy!  I think that makes it harder to accept the terminality in some ways.  You're so right about worrying about who you leave behind.  In some ways I'd be quite happy to go now but the thought of how my children will cope without me can be crushing at times.  I'm doing all I can to put in physical, emotional and financial support so they're not completely floundering when I go.... but that's been a lot harder than it looks..it's actually a full time job this preparing to die malarkey!  I definitely put off the boring bits....will .. funeral...finances and am spending far too much time having coffee and cake (whilst I can still get it down my gob!) I think I'll be less anxious if I get some of the more sensible things done.  I'm sorry to hear your cancer came back and that you're now palliative.  It's tough when you give up that last grain of hope.  Please know I'm always here if you'd like to reach out, have a rant or just not be alone.  In a weird way it's nice to talk to someone at the same stage...a previous head and neck group I joined was full of survivors and though their questions were completely valid for them, they seemed so trivial to me!  I wanted to scream 'just be glad you're gonna live'. Then I'd check myself and realise I'd be the same in their circumstances. Anyway, just wanted to say I'm here for you on the journey too if it helps and you want to, but no pressure either way.  The last thing you want is a crazy stalker on line! Lol!  Take care Violet ️