Don't know if its a bit of a come down because of the chemo, but what started out as a okay day had gone down hill.

I got a call from the gp receptionist saying that there were some forms for me to collect. I did and it was all about palative care and then down my mood went. I can't seem to split palative and terminal. Did anybody else go through this after being told.

Yes, I too have been through this and although it sounds scary its not if taken in the right context.  I was given a care plan to write of how I would like things done at end of life, ie stay at home/go to hospital, rules I wished people to abide by, etc.  I have worked all my life with the elderly where these things were a part of my job so it wasnt such a shock in my case.  I look at it that everyone dies at some point and we should all make our wishes known (ill or not) so that families know them if needed.   The palliative nurses and McMillan like to make themselves known to us - so I met them all but also told them that I didnt really feel I was ready for thier input at this moment in time and I would contact them if and when I was ready.  They now have the info they need so arrangements can be swiftly put in place if needed.  The McMillan nurses are actually brill because you are now entitled to PIP and if you ask them, they will arrange all the forms with your GP and get that benefit underway for you.  They will also assign you a nurse who can answer your questions and pop in for a chat if you need one.

Palliative care can go on for years Tonim so dont worry about the terminology - it means what you have already been told - not cureable but treatable and many people live for a very long time with this disease.   We are lucky cos we also get some help provided along the way if we want it.  I have been 'palliative' for 3yrs now and plan to be here a lot longer yet!  My way of coping with things I know but I have used this time to buy presents and pack away memory boxes for my children and hubby cos I feel comforted that I have the time to do that.  Remember you are  living with this disease, NOT dying from it!

What a difference a day makes for sure - and tomorrow will be a better one for you!

Take care my friend x

Hi tonim

I know my imput is from a former 'carer' point of view but would like to add to what the lovely max has already stated.  My friend was diagosed with primary breast cancer in her early thirties and in the following 23+ years had treatment after treatment, took her teaching degree, taught 5yr olds and then had secondaries in her bones, liver, lungs.  She was classed as palliative care for over 5 years and achieved so much that she wanted to do during that time.  Like Max she put in place everything for her family that would make it easier when her time came and then got on with living (and loving) her life.  

As for my husband he to was 'palliative' for nearly three years and being a private and proud  man chose not to share his feelings or wishes. Thus I still wonder if I got it right. I think they call it Catch 22.

Easy for me to say I know but Palliative is just a word. You are moving forward with treatment and the forum is here for the 'offloading moments' when hiccups happen. Sending a virtual hug. Jules

Good luck with the scan on Monday, Max56 - I'm routing for you!  I had my Docetaxel yesterday and God, I hate it!  My main thing about it is feeling that I don't enjoy any food - living on ice cream, Ovaltine and soup! Everything else either tastes vile or tasteless like eating cardboard!  Only one Session of Docetaxel to go on 6 June and then back on the hormone tablets.  I really shouldn't moan after my good news this week - I am really lucky In spite of it all when a lot of people are going through worse times.

Hi Tonim ....  its an understatement to say 'its been a bit hard' sweetheart - its been a massive shock for you I know, and having to research treatment options yourself and try to come to terms with the news is overwhelming!  I was lucky to have a really lovely cancer nurse assigned to me when I got the news and her help was invaluable (I do not have one now at my new clinic sadly).  Hopefully your GP or McMillan can suggest a source to help you.  Does your local hospital have a Big C Centre?  Always remember that the forum here have lovely nurses who you can call on a freephone number - they are very supportive.  Keep in touch and much love to you and your family x

Hi lovestosing ....  Hope you dont feel too bad after the D drug - i agree that its a harsh one!  I have been on various chemo drugs for around 3.5yrs now and have found this the hardest one - but that could be accumulative I guess and not just a particular drug.  I dont find I have lost taste but I dont feel hungry very often and certainly cant eat a large amount in one sitting - still fat though haha!  What I do eat soon reappears the other end!  Has your hair gone? because after 4 cycles I still have quite a lot of hair which is very strange.  I had my hair cut VERY short expecting it to be gone after cycle 2 -  the chemo staff are quite baffled too.

Thank you for your good wishes for Monday - I should be used to things by now but I still feel terrified every time scan time comes around.  Take care and speak soon x

Hi Max56 - yes the hair's gone!  It's funny how you dread that but it's not the worst thing - the rotten Docetaxel is!  I was dreading wearing a wig but now I don't like to take it off at the end of the day as having no hair reminds me of my illness.  Having had 3 FEC and 2 Docetaxels, I'm starting to see some fluff coming in and I've been looking at some snazzy new short hairstyles online that I might go for when the hair comes back - always good to be prepared!