I'm afraid my sister has not got much time left with us

One of my two sisters, who’s only 35 and has two small children (7 and 5,5), was diagnosed with primary BC 4 y ago, with 2ndary BC 3y ago (spine, liver and lung mets). The past three years went by with ups and downs; she has had really good periods, but since the beginning of this year, her tumor marker just rose and rose… And then since the first communion of her daughter on the 1st of May (something she had been living towards for the past year) her situation has changed drastically. She started on new chemo for her liver mets in the beginning of May, but since it didn’t produce any effects (only negative side effects), she was put off the treatment early July. They were going to give her a new chemo-treatment after she would return from her holiday in Italy.
Then a new tumor was discovered (5x5cm) on her spine, between her shoulders. From the first day she started radiotherapy (which she had for 5 days) for that tumor, she had to stay in hospital because she could not walk anymore… They gave her cortisone, to reduce the swelling, and it appeared to be better towards the end of that week. She could walk on crutches. So she, her husband, and the two children went on holiday after all (one week later than planned), together with my other sister and her family (she only went because my other sister was also there to support her). We all didn’t think it a marvellous idea, but since her diagnosis isn’t good, we felt that maybe she should get the opportunity to enjoy one last holiday. Well, she didn’t get that opportunity: every day her legs were getting worse over there, and after a couple of days she had to be operated on her tumor in Italy… That was 9 days ago. Apparently, as I heard from my eldest sister, who just got back yesterday, the surgeons had discussed whether they would venture an operation or not, since it was so risky, as my sister was weakened and also has water in her lungs. She was operated on in the end, after all, and last Wednesday she was flewn back to Belgium (for that’s where we are from). That flight was hell for her (but an ambulance for 2 days would have been even worse). So since then she’s been in hospital, I’ve visited her on Thursday and Saturday (we live 2 hours away), and I have the impression she’s getting weaker every day. The past four years, my sister has been tremendously strong, but I think now she realizes that her life is coming closer to an end, she has lost all hope and strength. Since she is so weak, and the wound from the operation has not healed yet, they cannot give her new chemo yet. And meanwhile her liver is just getting worse. She has difficulty breathing when sitting upright to eat (she does not eat much…), for her stomach is so swollen (it looks like she’s pregnant).
She is just lying there, is tired, and has no energy even to listen to the audiobook I brought her. I first thought it would be a matter of months, but I’m afraid it might be closer to a couple of weeks, but really I have no idea. I still hope it might be some months. I don’t know what a realistic diagnosis is in her case.
This is so terrible, for we have been living with the thought of her dying for the last couple of years, but now it’s getting so concrete. I feel so so so sorry for her, and it’s terribly to see her cry and to know that we cannot do anything at all to help her. Just be there,hold her. I feel so guilty that our lives are just going on in the meantime, while she has a husband and two children two say goodbye to, and is all alone with her fears and thoughts…
Her oldest, my 7-year old niece, is very well aware of what is going on. She has become very silent, does not laugh anymore, because she probably realizes that she is about to lose her mother. My brother-in-law is very introvert as well, and I don’t really know how we can support him, as he has never talked to us about my sister’s illness.

Sorry for the long post, I just wanted to write this down. I can talk to friends about what is happening, but no one really can possibly understand what this kind of situation is like.

Hi chickpea

I am sorry to hear what a difficult time your sister is having. I hope writing it all down has been a help and I’m sure you will be getting replies from other forum members. I am just posting to let you know you can always phone our helpline if you think it would be of help to talk to someone about how your are feeling.

Our helpline is free and confidential. It is on 0808 800 6000 and open Monday - Friday, 9am - 5pm
Saturday, 9am - 2pm

Best wishes

Ann

It’s awful for you but you love your sister so much I think you will continue to support her whatever the outcome. She will appreciate whatever you can do and will see things differently from you. It’s so sad, but you are doing the best you can and are to be admired for that. You will be able to support her children when she dies and after because you knew her in childhood too and they will love to know about all the good times you have had before they came into the world.

I am thinking of you and your sister

Mole

Hi chickpea

I’m so sorry to hear about your sister,i’m sure she knows that you will be there for her family.

You are in my thoughts and prayers,you never lose the ones you love
Eleanor

Hi chickpea

I am so sorry to hear about your sister, what can we say that can make you feel better.
When we have secondaries we know one day we will have to face the pain and sadness that we will put our loved ones through you sound like you are having to be the strong one, like Eleanor said I am sure your sister knows you will be there for her family.
I will be praying for you through this very difficult time.

Love Debsxxx

Oh chickpea,

I’m so sorry to read about the distress that you, your sister and her family are suffering and your feelings of helplessness.

I understand your sister is now in Belgium so am not sure what provision is available there but in the UK, we have MacMillan or palliative care nurses and social workers who can provide information and emotional support to very ill cancer patients and their families. Is there anything similar attached to your sister’s hospital?

I have secondary cancer and I am sure that when I become very ill, I would like family and friends to visit me and support me by just being there and being open with me. Have you felt able to talk to your sister about how much she knows or feels. If she is receptive to this, perhaps you could ask her if there is anything special she would like you to do for her in the future, particularly as regards the children or her husband.

I do so feel for you and hope that there is some support you can draw on.

Take care.

Wendy x

Hi Chickpea
I am thinking about you and your sister and family, it must be terrible for all of you

Hi Chickpea
I feel so much for you … I know that feeling of helplessness too as I lost my daughter 8 weeks ago today to this awful disease. It does help writing it all down though I know that and the wonderful people on here will help you through it … they certainly helped me … the only people who truly understand. Keep writing as we will keep reading and supporting you.
Love Sue x

Thanks everyone for all your support, really.

Wendy: Well, my sister does get a lot of support from a hospital psychologist, who is attached to the hospital especially for patients with cancer - and their relatives. (In addition, she used to work at that very hospital as a head nurse -until she got ill-, so a lot of former colleagues surround her as well). My mother too has already talked to this psychologist about my sister’s illness, for she really felt the need. We, including my sister, apparently, think it would be a good idea if my brother in law would do the same, but he prefers not to. As I said, he is very introvert. My brother in law lost his father as an 18-year-old, and about a year after my sister was first diagnosed with BC, also his mother got BC (luckily, she is doing fine now). I think he has a really hard time talking about loss, and it seems like he is only just beginning to realize the seriousness of my sister’s situation. I think he’s been trying to deny it up to now, and I have the impression that in additioin, my sister is trying very hard to spare him from reality.

As for such delicate conversations with my sister: I really haven’t dared to touch upon “the” topic yet (it is something one prefers to postpone until “it really gets bad”, I have the feeling). I would like to, though. What makes it difficult is that I’m hardly ever alone with her. There is always someone else around. I was alone with her last Thursday, however, and then she was much more emotional than usual. She is more fragile in such moments, which makes it seem more difficult to breach a subject like the future of her children and husband, but at the same time, it will have to be such a moment when I decide to do so. I would just like to reassure her that they will do ok in life, that we will do our utmost to be there for them, and that we will keep her memory alive when being together with them.

I’m so sorry for you and your family. All I can say is that it took four days for my father to die as he took a sudden turn and ended up on morphine. We all took turns to sit with him alone where we could talk to him in private and assure him that my mother would be cared for. I didn’t just talk about his death, I spoke about my memories of him throughout my life and some very funny stories about times we had shared. My only regret is that I didn’t do it sooner as I think he was so drugged up that he probably couldn’t hear me!
Your sister knows that you will care for her children so maybe keep it to happy memories that you shared!

God bless
xxx

Hi Chickpea

Please use this time to tell your sister all the things in the world you want to tell her…tell her you love her…talk about her children and their futures. Perhaps if you can break the silence around talking about ‘the’ topic then others who love will also be able to.

So often when people are dying everyone pretends they are not. The person dying doesn’t mention it for fear of upsetting people, and the relatives don’t mention it for fear of upsetting the person dying. Everyone knows what no one is talking about and I think that can make an awful time even worse.

Thinking of you at this hard hard time.

Jane

ah chickpea ,i feel for you at this moment ,i recently lost my sister and a bro in law (on the same day) and i was with my dear sister when she passed .id been with her and watched her gradually deteriarate untill she was too weak to even get out of bed ,we shared memories of childhood and her boys and my kids ,so had a lot of time to get things sorted so to speak .just be there for her whenever you can ,let her cry talk laugh whatever .you will treasure the time you had to tell each other how you really feel .and it makes the passing easier knowing that all has been said .maybe your bro in law is keeping it all in for the family and will need help and support when everything is over .i really feel sad for you as its so hard to watch someone you love weaken and slip away.remeber we are all here thinking of you and if you need support just come on here and there is always a reply for you .much love and hugs .
lynn x

hi lynn, I’m so sorry to hear that you lost two loved ones on the very same day… life can be so cruel…
dear chrissie and jane: I think you’re both so right that talking about memories and what is about to come is important.

Yesterday evening I heard my sis on the phone (her voice has become so weak that it’s difficult to understand her at times - whereas she and my other sister usually talk and laugh way too loud for my sensitive ears…), and she asked me if I could help her tomorrow with writing down a letter for her daughter, who’s going on a summer camp next week (she has great difficulty writing herself, due to the pain she suffers (she gets morphine plasters now) and the position she’s lying in). She also mentioned a little booklet she had bought and had planned to write in every now and then (for the children) - something she had mostly postponed, she said. She would ask her husband to bring it to hospital, so she could continue writing in it. So I actually think she very much wants to talk about it all, and I feel kind of relieved by that.

Chickpea, I am so sorry. Is your sister older or younger than you? I have an older sister who feels desperately guilty and protective that I have BC and she hasn’t. I understand that, although I too would be devastated if it was happening to her. I am glad she wants to write and to talk, it will mean so much for the family. I feel heartbroken for you all and you will be deep in my thoughts.

Best wishes Jilly xxx

Sending my love and prayers for you chickpea. I have been at this stage with both my mum and sister and although every moment is precious it is emotionally draining, I feel for you and your family especially the kids.
If your sister is interested in doing something for the kids (with your help of course) there is a good website called “WINSTONS WISH” if you go there and click on the tab at the side for “THE MUMMY DIARIES” there are a few ideas. She may not feel up to it but I thought it was worth a mention.
I will try my best to post the link here but not sure it will work…so here goes…

winstonswish.org.uk/mainsection.asp?section=000100010010&pagetitle=Serious+Illness
Take care,
Lizxx

Hi all I was so sad when I read this …I lost my parents with 8 weeks apart which was bad enuff but two on the same day that is beyond comprehension .I too sat with Mum and Dad and chatted away …mum was given 4 weeks but only lived 6 days the longest of my life and then dad gave up cos he awnted to be with her .
it is very very draining you are exhausted mentally and as Liz says every second is precious …the thought of leaving kids behind must be the hardest part my sis in law was ten when she lost her mum to bc at 46 …it was very very sad .She would have loved to have had a letter or something from her but she didnt ,it would have made all the difference I am certain of that just by things she has said over the years she is 40 herself now
Life is so cruel sometimes love to you all and thinking of you ,…Maz xxxx

Chickpea darling…

please if you have time printof my thread and let your beautiful sister see I am fighting my battle…a very hard one…similar in a way except I was first dx in Jan this year and told 2 weeks ago to give up…my liver is enlarged too and I look very preggers and now us a wheelchair but my 20mth old and 6yr old and the fact this is MY LIFE I am going to fight this for as long as I can…hard it is byt I MUST give it my all.I wish I could sit and hold your sister and telll her however tough we are here…here with her she has such a loving family…sorry if these words seem a bit out there but I ahve hd chemo and am very tired tooo from blood transfusion…

hold her love her and you are all in my thoughts…

Love xxxxxxxxxxxxxxxxxxxxxxxx

dear Paula

sorry you have such a time on your hands but you are living your life to the full despite everything, I admire you for spending time helping chickpea and for having the guts to keep going

Mole

Paula,

My thoughts are with you at this really difficult time,you have made me realise that life is very short and to make the most of it,
your children are blessed with having you as their mum,something they will never forget.Godblessxx

Dearest Paula…my thoughts too are with you and your family …you must be quite young which makes it even harder …I am praying for a miracle for you xxxxxxxxxxxx
Maz