Helen, so glad to hear you are feeling a little better about things..its unbelievable the problems you have had. You are a very special lady. Take care.x
Sianie, please dont feel guilty for ranting on here and you never need to apologise. I know exactly how your mum feels and i have a pretty good idea of how you feel as i too have a beautiful caring daughter and it truly breaks my heart to know what i am putting her through. Everyone tells me i shouldnt feel guilty..i didnt ask for this...but you cant help it. I'm sure all your mum wants to do is crawl into a hole and not be a worry to anyone..thats certainyl how i feel a lot of the time. I'm sure she will rally soon...i know its very hard on you but all you can do is just keep loving her and coaxing her. Believe me, however bad things get she has a daughter who she loves very much and of whom she is very proud!! People who have no experience of this disease have no idea of the devastting effect it has on the whole family.
Sending love and hugs to everyone.x
Belinda, I hope the chemo doesn't knock it down on Friday. You need a little break. I'm not liking my chemo. Every time on my second dose of the cycle my white count is down, so I have to go back the next day for the neulasta. Just tired of infusions and injections. Sure miss just swallowing xeloda. I wish they had more oral chemos.
Yes I agree, I think we must be able to be honest here, in some respects it's the only place we can be, Marie xxxx
Helen I have been thinking of you lots. I met a school friend today who is a nurse , she was quite shocked by some of my experiences
eg "Madam , you have secondary breast cancer , there is no cure it can only be managed next."My husband and I were then led out the room . I wasn't even called by my name ! It still makes me cross along with where it had spread to being sent to me in a letter , not told in a consultation. I did change my onc.
Sorry if I'm sounding off again, but I think this is more to to with my anxiety than thw big C .
I think we we would all 'cope' a little better if there was a little bit mpre understanding. I apologise to all the caring good staff I know there are lots of you doing a fantastic job, just please have a word with the insensitive ones, especially Helen's onc.
love Marie xxx
Oh Helen, Your onc sounds depressing. I would check out the hospice to see what they have to offer. Then I would make my choices from there. Meanwhile you need to concentrate on what makes you happy and go for it! Hugs, Funnyface
Hi Helen, I go to a hospice to get my denosub inj every 4 weeks. My nurse is great and always lets us know of anything new coming up. It is good to get to know everyone and they really know a lot about pain relief etc . After a while its gets familiar and is lots better than hospital. I wish you luck xxx
Sianie, the chemo I was on for liver mets was vinorelbine and it worked very well. I had eight cycles but onc took me off it to give me a break as I was having low blood counts I am now on faslodex which is a hormone treatment given by monthly injection.I should find out in four weeks if it is working. I he so because it is an easy treatment! The onc has something else lined up for me if not and I feel I can always go back to vinorelbine. Different tx work for different people. Your mum could get something that works for years and if not there are lots of treatments out there. Good luck sianie. Hopefully your mum will soon get in a better place and then you can feel better too.
Lots of love. Sheila.xxx
Helen, what is that man like!! You need an optimistic onc not a negative one. Hi doesn't seem to be forward thinking. When I saw him two weeks ago he had ordered eribulin for me before it was going off the drugs fund. It had gone to appeal so I will find out on Thursday when I see him. Wbr. He does that there are many other tx to try. He also says that he has patients 4 & 5 years out of w b r who are still doing fine. I have bone, lung and liver mets beside recently found brain mets and if we can sort brain out and keep cancer in the rest of the body under control I should also be able to keep stable for a while to come. If there are any mets showing after treatment I could possibly have stereotactic to get rid of the ones left..
Don't let your onc let you down. You Need to have confidence in your team.
Sending you a massive hug and be assertive with that insensitive man!
Hope everyone else is doing okay and that your tx are going okay. Can't write any more as wbr are making me very very tired but only 3to go!
Lots of love Sheila. Xxx
Hello, ladies, just to wish everyone else having tests/results/treatments today the best of luck and no se's! Hugs, Barton.x.
Helen - so sorry to hear what that nasty Onc has said to you! Yes, angry eyes definitely needed! I think, if you can bear it, go with Nicky's suggestion and try the hospice once to see how it is. As she suggests, you don't have to go again if you don't want to/find it too much, too soon. I can fully understand your reluctance, and, of course, I'm guilty of "do what I say, not do what I do" syndrome (I would be extremely reluctant myself, too). Hugs and all best wishes, Barton.x.
Oh Helen, I didn't know he has said that - more angry eyes I think are needed. As the others have said he hasn't been right so far! However I can imagine how visiting the hospice may upset you - or the thought of visiting it anyway. I went to our local hospice 7 years ago when I had my initial secondary dx to get some much needed relaxation therapy and it was a lovely, friendly place. I haven't been since but I know of lots of other ladies who visit their local hospice frequently and one thing they are so good at is pain relief, something you've been suffering from. I think you should try and go with an open mind and if it's not the place for you to re-visit then don't. If you find it soothing or a place to be calm in then use everything they can offer you!
Take care and be kind to yourself - more peanut M & M's may be necessary.
ps Hi to everyone else - hope you're not being blown away today!