Hi my sister was diagnosed with bc in 2007 and after chemo and a mastectomy we thought she was good and had won the battle. In December she was diagnosed with liver and bone mets. We were all heartbroken and shocked but we thought she could fight this too. She started having chemo weekly and everything was going so well and her onc was delighted with her progress until she developed a chest infection at the end of Jan which turned out to be pneumonia. We were told that this would kill her and to prepare for the worst. As ever she fought it and was out of hospital after 12 days. We thought she was on the mend but disaster then when her lungs started to fill up with fluid and they’ve told us she can’t have more chemo and there’s nothing else they can do except keep her comfortable with the help of pallitive care. I can’t believe that nothing more can be done for her. Her belly and legs are swollen and full of fluid and she’s on otamorph. Shes really struggling with her breathing and needs oxygen all the time. I just feel absolutely heartbroken at the thought of losing her and to make matters worse I am getting married in June and she helped me plan the whole thing. It’s just so unfair!!
Dear Cbaby, welcome to the BCC forums
I am very sorry to read that you are having such a difficult time at the moment, I am sure your fellow users will along soon with support and information for you.
In addition, please do call our helpliners, here you can talk your concerns through with someone in confidence, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000
Take care
Lucy
Hi Cbaby14, I would like to send a hug and love to you all, I am sure others will be along soon to offer you their thoughts, please keep posting and let us know how things are for all of you. Love junieliz x
Hi
So sorry to hear about your sister.
I suppose the first thing to consider is how aggressive does your sister want to be with treatment? I say this as a 50 year old stage IV woman myself with liver, lung and bone mets. My experience of talking to other stage IV women who are further down the line than myself is that while some want to fight to the bitter end regardless of the toll on their physical and mental state, others decide that the time has come to accept and do whatever they can to feel comfortable and pain free.
I know how much you and your family want your sister to carry on but please make sure this is what she wants for herself and that she is not just hanging on for others. She is the most important person here.
Developing pneumonia alongside the chemo has obviously taken its’ toll. It sounds like she has ascites from the liver mets. Are the palliative / hospice team involved? They will be able to assess her and see what they can to to make her more comfortable. It may be that her lungs and belly can be drained of fluid which would make her breathing easier. If she is in pain, she needs to be assessed and this sorted out.
At the moment, it sounds like she is in no fit state for chemo, however it could be that if she has the fluid drained she might improve and get to the stage where she could have more chemo. She might want to think about getting a second opinion, if that’s what she wants to do.
I’m sorry there are no easy answers here. I’m sure she is so grateful to have her caring sister by her side, being her advocate.
Big hugs to you all
Laurie x
Hi Cbaby
I have the unfortunate draw that your sister has had, I was given a few weeks to live at christmas, still here… I haven’t had pneumonia but have had a wrotten cold that I thought may wipe me out. My stomach is about 8 months pregnant but its not from fluid, its the liver growing and the organs shufflinf around to make room. My stomach has halfed in size and gone an odd shape too. At the moment I want to live and am enjoying the best social life I have ever had, with people poppoing in each day to say HI. I am on steroids which has made me weak and I live in fear of not being able to get out, my mobility car is a god send as I can get in and out of there with no trouble and someone has kindly offered me a wheelchair, so i may be ok iif i have someone around to get it in and out.
Your sister has to work out what she wants…its her decesion. I am still on Tamoxifen, small dose steroids and chemo if and when I think my body can take it. Its Capecitabine, an oral tablet, perhaps she can ask fr this to be looked at. I does have side effects but you have to weigh out whether you want to live with them or not. I have 2 children so I will hold onto goals that I have set myself for as long as possible, for my sake as well as there’s.
I have a sort of 'blog going on here ‘i seem to be in a real surreal place’ maybe that may help you understand whats going on in her head a little, although we are all different… I have everything that I can, sorted and in order, even planned my funeral to an extent.
I hope this helps a little bit, please feel free to PM me, if you want to ask any questions.
Clare xxx
Hi Cbaby,
so very sorry to read about your sister. You are right, it isn’t fair, this disease is cruel and unpredictable, robbing people of confidence, fertility and sometimes life itself. Alesta and Potmaid are both wise women who know from the inside what it is like to live with secondary breast cancer, and how devastating it is to realise that you may not live to see things that you have looked forward to.
No-one can say how long your sister has left, no-one apart from her can make the choices about what further interventions to accept. I know it’s no consolation, but I honestly believe she will not be taken from you until both she and those of you who love her are as ready as you can be for that to happen. Of course you love her and don’t want to lose her; of course you want her to be at your wedding… and of course you don’t want her to suffer… so you probably are tearing yourself apart trying to balance these semeingly conflicting factors. I am sure she knows that you love her, and that she too would like to be at your wedding. There is no right answer here… you have to do/be what is authentic for you to be/do. For now, treasure each precious day, try to find some ‘golden moments’ to remember in the future; don’t fear laughter or smiles, they are health-giving, but don’t be afriad to cry or shout either.
I wish I could make it all right for you, but of course I can’t. I do know that with your love, and that of her friends and family, your sister will be best able to face whatever the future holds.
Take care and a big hug.
Hello Cbaby. Alesta 29 has made all the point I would have made, so I will just convey my sympathy, and prey she will be made comfortable.
This is a very tough time for you, and you may feel the need to talk to someone who understands what has happened and is going on - so if you feel the need to talk, maybe you could give bcc a call.
Thanks for all your support and comments. Palliative care have said that the fluid can’t be drained. She was on steroids but was taken off these 2weeks ago after a bad nose bleed and coughing up blood. She can’t walk by herself and now needs a wheelchair for the loo etc. She’s mostly drowsy and sleepy with the oramorph. At least shes not in any pain but it just seems like shes getting weaker by the day!
Hi Cbaby,
Sorry to hear about your situation. It is very similar to my own and I too have a sister who is very upset about my latest decline.
It is only natural to want to keep her with you for as long as possible, especially when the illness becomes truly life limiting so quickly. My family and friends cannot quite believe how rapid my decline has been, neither can I to a certain extent. I have been living on borrowed time for over 2 years now so it shouldn’t have come as such a big shock, but of course it has. Looks like I not invincible after all!
There are some very wise words on here from ladies in a similar situation. I am also sending you hugs and hoping that you are able to spend as much time with your sister as possible, I am sure it will help.
Sue x