My Appointment
My Appointment Had my appointment at UCH London yesterday.
Well, zoladex injections and chemo to start off with. I have numerous large liver mets and they were very honest with me that they are not confident that treatment will work. But I have to give this my all and just hope and pray.
Had been dealing with this ok until yesterday but now I have just lost the plot. Unable to cope- keep crying.
Think I need time to get my head around this. Not going to be easy.
I feel so sad.
Feel sad for you too I’m so sorry to hear your news - I can understand your distress. It is a hard time for you all and for this to happen so quickly. Finding it hard to say anything to you as it is making me cry too.
I was diagnosed in april 05 and have had numeous secondaries appearing - in september 06 I was told I might only live a few months and now it’s 9 months later so you can never tell how effective chemo is until you’ve had it.
What chemo are you having and when is it starting? At least when it is starting you will feel something is being done to help you and psychologically that helps.
I did post a reply to your previous question but found today it’s not there so don’t know what happened there - sorry about that as I feel I’ve neglected you!!
I know this is a horrible thought but in the long run it might help you. Have you been referred to a MacMillan nurse? Mine is so helpful and just really I use her as a sounding board and she helps me to get hold of extra money from charities for treats that otherwise we couldn’t afford. My children are 10 and 7 and are struggling . The hospice social worker has been really helpful in that as well. Again, I know that is a horrible thought but there are people out there that can help you and your partner and your little one.
I’ve also claimed DLA under Special Rules and I would have thought you would qualify for that and that is why the Mac nurses are so helpful.
Hope that hasn’t upset you more but I expect it has. I just thought some practical suggestions might help you get your head round this.
I’m really truly sorry for you and your family and if I can help you with any questions or things that are happening re chemo or anything else, please post and I’ll make sure my post appears next time.
Hope you are not alone today and that you’ve friends or family that can be with you today. It can be lonely with secondaries as often people don’t know what to say to you but I’m sure there are people you know that can give you support. I’ve been amazed by the people that have helped us and really want to and again can be surprised by people who you think would help you and then don’t!!
Please don’t be alone today and hope the chemo does give you fantstic results without too many side effects.
Thinking of you and as I said I’m so sorry that this has happened so quickly.
Kate
hope someone else posts Hi again
Hope somebody else will reply as they will have more experience of liver mets than me.
Thinking of you
Kate
Sending you HUGS!! It’s OK to be scared, cry, kick, scream whatever you feel like doing. I know so many of us seem very upbeat on here but believe you me we have our bad days. I know everyone’s situation is different and we don’t know what is in the cards for us but I wanted to tell you about a lady that the drs told her she wouldn’t live. She post on a site called www.bca.ns.ca/forum she signs on ans Judi in Ann Arbor MI. Her last posting was on May 12. If you go to look you will have to go back in the pages. I think I first went back 4 days then 7 then 10 and she posted with a heading called Hey All. This is and open forum and you can just go read if you want. She is now at her 6 years mark and started with extensive liver, lung and bone mets and was put in intensive care and almost died. She still works travels and says she is still worried about getting wrinkles. The drs had given her no hope. Don’t give up!!! Funnyface
Thanks Hello
Thanks for the replies. Means a lot to me.
Had a bad 2 days but bit better today. Just not sure how to be with friends and family.
Any advice?
Hi maxwellsmummy I understand your position and just want to say that you WILL come to terms with your situation. It takes time but it does happen. In the meantime, tell your friends and family only what you are happy with. Not all my friends know my diagnosis, some know the full story and some only know parts. I try and keep many of my family at arms length re: illness simply because I hate fuss. I have not told my two children (7&5) the full extent of things and as time goes by, I find this less necessary. When I become more ill I know I will have to address this but for now, I just want normal family life, for them to remember.
Regarding chemo and the docs response; they cannot give you an absolute yes or no, it will work. It may work, it may not. If not, there are many more options to try and while it is EXTREMELY disheartening when treatments fail (and I know this) they will usually find something that works for you eventually. You just have to trawl through the options. Advanced breast cancer is not an immediate death sentence and there are results indicating slightly improved survival times slowly emerging from ongoing research. Many more drugs are being trialled and some of these sound very promising.
I have extensive liver mets and have been very well for two years now. I first went to the docs on the day before my daughters fourth birthday and didn’t know then if I would see her begin school. She will be six in two weeks time. I never knew I would be sitting here now planning a very pink party, spending whole days when I don’t give my cancer more than a passing thought.
Good Luck with everything, and keep coming back here - we know just what you are going through.
Jenny
xx
So Sorry Felt sad at your news. It is hard to know what to do, I personally find this site great as well as using their peer support where you can speak directly to someone in a similar position.
You know your family, friends and yourself best so it is hard to give good advice as to how to deal with them. I personally decided to be open and honest with EVERYONE the reason being that I had witnessed a work coleague who told no one and it was such a shock to all when we found out that instead of her returning to work, she had in fact days to live. I also couldn’t cope with remembering who knew what and putting that strain onto those close to me. If you choose this route, try to prepare yourself for their reactions.
I personally found that everyone was great, some were a little pitying at first but I soon showed them that I was ok - I used the analogy that if I’d been killed in a car crash I would not have had the opportunity that I had now to do and say the things that I wanted.
Be prepared for some reactions. My parents-in-law were always crying and hugging me when they heard the news, but that was their way of coping and after a couple of weeks they recovered and have been great. Half my family tried to just change the subject and didn’t want to talk about it, whilst the other half coped quite well. My oldest friends have been great, keeping in touch but not ‘swamping’ me.
Kate’s advice is spot on - try to get help from McMillan / breast care nurse and set into motion the DLA and whatever other help you can get.
Also learn to be a little selfish and try to delegate things, you need to keep as much of your energy in order to give the chemo the best chance of working.
Finally, I know things seem bleak but it is possible to fight this and feel well again. I know of lots of stories, including myself, where the docs have given only a few months but where people have survived much much longer.
Thinking of you
R
Just to add I have told my daughter as much as I can. I have never lied to her - again I got great support from my Mcmillan nurse and my social worker who operates out of the local Hospice.
Take care
R x