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!
dear catlady, your onc to date has not been brilliant - i would not start believing his comments now. however, a truly scary thing to hear - i don't know how i will cope when i hear those words but i am sure similar to you. i too feel i have a brainy cancer that adapts very quickly, but i need to wait and see if this latest treatment works. hospice visit is good they will help you with management and will be a safety net for you if you need them.
Hi Helen...you have been through so much over last few weeks..no wonder its all getting to you....Its so hard to get it right...to get as much as possible out of palliative/hospice services....without it reminding you of whats around the corner for us all......but truely no one knows when that will be....just been watching Clive James on breakfast....he had been told he was going to die with a terminal illness 2 years ago.......he was on with presenter reading poetry he has just written and talking about his grand-daughter.....frail but still hanging on in there.....no one knows!!...Take carexx
Sending big hugs , will be thinking of you and remembering you in my prayers. Marie xxxxx
Thank you , Helen, Nicky and Janete, for your support.
Strange thing though once I had cyber shouted the phone started to ring with appointments. It just felt ridiculous that part of my stress is sorting things out and thinking there are things they are not telling me, a little paranoid
However,I do think about those ladies out there who for one reason or another are unable to sort through the mess of appointments.
On the Poldark theme I actually think the first series was better, the tension just isn't there. Honestly the books are brilliant if they do keep to the story a lovely young doctor should be coming to Cornwall. Oh dear , I think my naughty alter ego is going to get naughty again !
Thank you once again I don't know how I managed before I started talking to you , take care