Thanks suze xxxxx I am calling my onc tomorrow cos if something doesn’t change I am goin to end up confronting them which I don’t want or need right
now. I just don’t get this assumption that my time is so
short. God it’s exhausting.
Hi Signet, So sorry to hear you are still having such a bad time. I can’t imagine what on earth this nurse thinks she is doing by saying all this negative stuff to you. Nobody knows how long any of us have left but you certainly don’t need someone telling you that it’s not much! My GP did that to me when I was first diagnosed, he had me dead within a few weeks and literally gave me no hope at all. But I’m having the treatment and I’m still here and feeling quite well, so don’t let anyone tell you otherwise. Do anything you feel like doing with your kids, why on earth she’s telling you not to do things with them is beyond me. I’m very sorry to hear about your Aunt dying. I know how hard it must be for you, I would suggest you ask for a different nurse next time and tell your ONC how they are making you feel. Good luck sweetheart, be kind to yourself, we’re all thinking of you. Lotsa love, Dianne x x x
Hi again signet,
Sorry that it happened again. Just scream out loud as much as you like, nobody can cope with the relentless talks like that. Sorry about your aunt, too. Sounds like it’s one things after other, no wonder you are feeling down and exhausted.
Re “isn’t enough time” and your prognosis on the other thread. The professionals don’t always got it right! And please don’t think you are just part of the statistics. There are lots of ladies on this site just goes on and on and please try and think you could be one of them.
I had an elderly male friend, who was dx with a tumour on his bladder. His dr told him that he had only 3 weeks to live last dec! But, after an risky op and 3 months of overdose chemo (by accident!) and another risky op, he’s now in remission! So, try and fight off those negativities and stay positive. Ignore the statistics and the negative talks (I knew how hard it was because I’ve been there myself to a certain degree).
Completely agree with Dianne, ask for a different nurse next time if you can or just don’t turn up at your appt. I’m not going to tolerate things like this if I were you. PM me anytime if you like.
Take care xx
Hi to all and apologies for jumping onto this thread but we’re (my Julie and I) feeling really down since since Julie was dx with secondaries in liver and bones. Her onc has arranged for Xeloda (Cap?) to start next wed but given the way Julie is feeling I’m worried she will not be fit enough to travel to hospital.
Does anyone have any ideas to help with her apitite? She’s feeling very weak and has eaten virtually nothing for the past 5 day. Her fluid intake is also vastly reduced, she just doesn’t feel like anything (although she say’s she feels hungry/thirsty).
Onc has put her on steroids (been on these for a week now).
Any one else had similar experiences?
Desperate Husband!
Hi black-n-Tan
I hope someone is along shortly who might be able to offer advice. I just wanted to say that it might be worth phoning the bc nurse or GP tomorrow for suggestions. There are drinks you can get that have all the vitamins etc you need in them that night help they could advise.
I do hope that things improve for you and Julie gets to start her meds next week.
Lots of love Anne
Hi I agree and would say considering it’s ber
days now she really needs help even with a dietician??? Def call bcn and tell her what’s happening.
Sounds also like she is struggling mentally too and I have had my partner and myself referred
to a psychologist who is based at the cancer centre in Edinburgh to
help us face our fears x
sometimes it’s just too much on both of you to talk together so a psychologist can see you apart and together which will maybe help u deal with it better xx
let us know how you get on xxxxx
Hi Black and Tan, I’m so sorry that you’ve had to join us. I was dx in Jan with liver and spine mets and at first I couldn’t eat. (I think it was mainly fear) I knew that I had to eat as I was very thin so I started by having a sachet of porridge in the morning - the one called ‘Oats so simple’. I also got a carton of something called Pro-Cal which are sachets that you add to your food and they build you up. You can get it on prescription from the Doctor. I had to force myself to eat anything at first but then it got easier and now I eat normally. I agree with Ann that you should speak to the Doctor as there are lots of different things available which may help. Once Julie gets used to the chemo, things will hopefully improve dramatically in terms of how she feels. Please let us know how she gets on next week, we’ll all be thinking of her.
Signet, glad you have got something sorted with the psychologist and hope you are feeling better today.
It’s supposed to be a lovely weekend, so take good care of yourselves everybody and enjoy it. Lotsa love, Dianne x x x
Enjoy
Signet, I’m so sorry you’re still having to put up with negative attitudes from nurses. Please try to keep strong. They don’t know how long you have, no-one does, but even if they genuinely think your time is likely to be shorter rather than longer, what do they hope to accomplish by having you continually upset ? Your onc sounds much more positive & hopeful & is bound to know more than them. I hope you’re still around for a long time, if only to stick 2 fingers up to them. Sorry too about OH, I think sometimes our partners can be so scared that they go into a form of denial, & act out of character. Really hope the psych can help you both. My condolences also on the death of your aunt. You are having such a lot to cope with - I’m amazed how brave you are.
Black-n Tan, so sorry I have no ideas about the appetite really, lost mine completely toward the end of chemo & it was weeks before I actually felt like eating anything; however, a lot of years ago I worked in a chemist where there were a couple of things the pharmacist would recommend to stimulate the appetite. Can’t remember specifics but maybe a talk with your local pharmacist might help. No need to tell you & Julie I’m sure that the drinking is so important, even if she has to force herself. Maybe ice lollies might help here ?
Wish you both all the best.
Hi, I’m really overwelmed with the responses received to this post, it’s reassuring to see there are other experiencing similar difficulties and are able and willing to share their experiences.
Today we had a visit from the local Loros Nurse who was very helpful as I ran through my list of things I needed help with. We’ve been persribed something to help with the sickness feeling and some high calorie drinks/deserts. She also gave some good advice on the best times for Julie to take her other medication, especially the steroids which may have been the reason for the broken nights.
Hopfully I’ll manage to find the time and courage to continue reading these realy helpful and “hope giving” messages and keep you kind ladies updated on our progress through this very difficult time.
Best regards
Hi Signet
Sorry I haven’t posted earlier, but I see that you have been given lots of really good advice and support already. Both occasions I have received ‘bad news’ re secondaries, the oncologist has said “I’m so sorry!” repeatedly and I have left thinking I am dying, then I have come on here and so many people have lifted my spirits and given me stories of hope.
I think that the medical profession think of ‘text book’ cases and what is likely to happen, but we are the ones living with it, who are the only ones who can really offer support or advice and more importantly inspirational stories to keep us going. What a shame we can’t find a miracle cure and all have our cancer halted in its tracks…because there would be so many of us applying for jobs in the health service! who could do a better job!
As to your other half, he is probably very frightened, quite understandably. My main worries are not how I will die, but how my husband and son will cope without me! My tears are never for myself, just intense sadness for what my son will miss out on by not having a mother or extreme jealousy at the thought of another woman taking over my life, my house, my family’s affections ( sorry have to stop the tears are flowing already!)
Take care and keep asking for help and support from people who genuinely know and care about what you’re going through.
Take care and enjoy the weekend with your lovely children, doing what YOU want to do!
Nicky xxxx
Hi Signet and everyoen else,
I’ve just read the post about the comments your nurse said about not going back to work!!! I was diagnosed with liver, bone, brain and bone mets a year ago and now I am looking for a new job. In October when my chemo finished my onc even said he would be happy for me to go back to work then - I was working in Moscow! I didn’t but could have. I would just tell them to get lost and listen to those who support you.
Louise
Hi all, I’ve posted this link from Breast Cancer Network Australia many times but the site has changed it’s pages and this is the new link, bcna.org.au/sites/default/files/messages_advanced_cancer_0.pdf these are stories of women coping, living well with all types of breast cancer secondaries. I often re-read them when I’m having a wobbly time…xx
Hi Signet - I do wonder if some of these nurses go on training courses on how to be negative! I haven’t seen a palliative care nurse but when I was first dx’ed with bone mets 18 months ago, the Macmillan nurse (and to a certain extent one of the breast care nurses) was just as you’ve described - bleak and negative and making me feel as though I was on my way out within the week. I remember telling her about people on this site living for years with secondaries and she just shrugged it off. She rang me a few times but I told her I’d contact her should I need her in the future - we really don’t need that sort of talk, do we??? Like yours, my onc is always very positive and optimistic - just wish the nurses would follow suit.
Take care - and go back to work if YOU want to, you don’t have to do as you’re told, it’s your life, live it your way. Also can’t believe you were told off for doing things with your children - appalling!
Lesley xx
To All
Whilst awaiting the doctor I would just like to express my thanks to this forum for all the advice and touching comments I’ve read.
Sadly, Julie has just this hour passed away.
Although there are many sad stories surrounding this dreadful disease I can sincerely say that since her initial dx (Feb 2006) through to her final breadth she suffered no pain. Julie slipped away from me in my arms.
My very best wishes go out to all you lovely ladies.
Regards
Chris
In memory of Julie, 20 July 1958 - 23 May 2010
Chris
So sorry for your loss. Will be thinking of you and your family today.
Debx
Dear Chris, I’m so very sorry to read your sad news.
Julie will always live in your heart. Thinking of you and all your family. My sincere condolences, Belinda.x
Dear Chris
May I pass on sincere condolences from all at Breast Cancer Care.
Take care
Lucy
Dear Chris,
So sorry to hear of your loss.
Snoogle
Chris
That is just so awful…words can’t express how sorry I feel. I was reading your posts last night, thinking what a lovely caring husband you must be. Please take comfort in thinking that Julie will have thought the same.
Wishing you strength at this very difficult time,
Nicky xx
Dear Chris
Terribly sad news. Thinking of you.
Alison x