terminal illness what do u say and do?

[hermykne]

my SIL has been diagnosed with 16wks to live, and its 2 wks into that period now.
she lives aboard and we will hopefully get to see her in july. she has one ds with my BIL who is only little.
its stage IV breast cancer which is now in her bones, aorund her heart, on her brain lining, and on her eyes. absolutely horrendous. and so very very sad. and hard when we're so far apart.
what should i do ? what should i say?
and how bad will it be ?
any experience or ideas appreciated.

bump

How awful for you all, there are no words but I am so sorry that you and your family have to deal with this. I take it she is quite young as well. I would take my lead from your SIL when I see her but what would you like to say?

We have a local centre which has a befriending service - with training for volunteers - to help those living with terminal illness. You may not have time to take the course, but if you have one locally, they may have time to have a chat with you.

If it were me, I think I might focus on practicalities. Reassure her that you love her lo, even though you are in different countries, and that you will be happy to have your neice/nephew to stay whenever possible. (Your db might be pleased to know that that will be a possibility for future summer hols from school, which might be hard to cover through work.)

The rest will depend upon how close you are to your sil, and how much you might be able to share with her - so hard to advise from a distance. I believe that I would want to be able to pass on advice about bringing up my children - practical things, like writing a list of my favourite books for them to read, or of places to visit that I loved, or of putting together a photoalbum for them with thoughts and memories in for them to read. Maybe you could take some photos with you of your dsil, so that a) you were prepared if she wanted to take up this idea and b) you could have time together looking at them anyway.

For 'afterwards' do be aware of OJ's wonderful advice to bereaved folk on the bereavement threads.

Be honest. Tell her how much you love and her and have enjoyed having her in your life. Reassure you that you and DH will be there to support BIL and nephew in any way you can.

No idea how bad it will be sorry. The last two people I have known who died of cancer have passed away suddenly and painlessly (one in his sleep). The best you can hope for, I suppose.

Take care, its gonna be tough.

cancer backup/macmillian do a book talking to people with advanced cancer (terminal) if you have a look on the website you can read on line, every situation is different i guess and dependant on lots of things like your relationship to the person that is dying, what is important it to kind of be lead by them but give them opportunities to talk whilst balancing that with if its your need or their.
take into account that they maybe confused like my DH was and may NOT be aware they are going to die. support the BIL so that he can best support his wife, dont expect that they will ask for what they need cos they won't ask cos they wont have a clear idea and it is exhusting trying to think of stuff.
give me a shout if i can help anymore, my husband died last june from a terminal brain tumour.

i think it is usual when cancer goes to the brain that people go into a coma so the end is more peaceful in that respect.

thank you very much for those little bits of advice, really really great, i wouldnt have thought of the book thing and that is lovely.

OJ thank you and I am really sorry for you, i think i may have seen that but I have been away from mumsnet for awhile.

my aunts in loros as she has a matter of weeks maybe days,i wrote her a letter as i'm very close to her and tonight i've made an album of photos right from when she was a baby until now including every family member.i'm going to see her tomorrow.
i also have a friend who was told in feb that she had 3 months to live [secondarys on her brain]she has 2 dc's 4 and 2.she is still battling on and is doing well considering.
i will be thinking of you and your family x

Follow her lead but be aware:
She will be very tired and may doze off while you are talking- just keep talking she will be aware.
She will forgetful and will be stumbling over words and memories - a bit like somebdy who has just had a stroke
Make sure your visit is planned and well announced in advanced she may want time to get ready

Also consider whether July is soon enough - 16 weeks seems very precise, when my wife was in her final stages she was given 2 - 8 weeks and died after 4 and as OJ says was in a coma for the last week, though we were told that even at this stage she would be aware of sound and touch around her.

DIOM makes a good point about people still being aware even if they are in a coma.
i think the thing about people having a terminal illness is that people often want to offer hope when sadly there is none and you have to allow for the person to tell you how it really is as lots of people will down play it.

again thank you very much,
DIOM we cant get there any sooner due to my dhs work, his mum is going out nxt wk and then us after 2 wks. i know its closer to the latter part of the 16wks which is scary.

but again many thnks

Sory to hear your news.My SIL died in march of cancer.The hospital provided a bed for her at home.She wasnt expected to live past the weekend,but hung on for a few days more.The day before she died she was virtually out of it because of the increasing amounts of morphine.It was a very sad time for everyone ,but SIL just died very peacefully in the end.

Oh how awful

I have been in a similar situation and I asked what I could do to help practically (ended up having to help my friend arrange her funeral, but she was determined to do it and I think it helped her accept things).

I was also told very forcefully that my friend didn't want to hear sympathy or sadness, there wasn't time and she didn't have the energy to take on the sadness of others and she wanted to see everyone first and talk about utter rubbish instead.

Finally I'd say, expect the unexpected, sometimes people seem to be rallying and then die suddenly. Lots of people send everyone home and then die alone and perhaps unconsciously that's a choice.

Also I was in a coma for three weeks and I could hear everything so like others have said keep communicating, while there is a pulse there is a person.

mummylin do you mind me asking how long your SIL had been sick or grade IV if it was b/c.
I know one cant compare cases but just i'm curious.
wmmc thanks re the chat tip.

my SIL visited her oncologist on fri last and shes been give 12 to 25 wks by him irrespective of treatment. so scary.

my sil had breast cancer 16 yrs ago and was seemingly cured.3yrs ago her back started to ache and eventually she was diagnosed with cancer in her spine.The specialist told her that although he couldnt cure it ,he could give her treatment which would help to keep it at bay.About 12 months ago they decided to give her chemo for the first time,she was due to have 6 sessions.after only 4 of them it had to be stopped owing to something with her blood platelets.They gave her transfusions and she eventually started on another course of chemo.She lost her hair after the first session of this,in feb this year she had trouble breathing and had to go into hosp to have her lungs drained of fluid,this happened again 2 weeks later,then it was found to be more cancer,she was given 4 weeks to live on the monday ,but by thursday this had changed to she wasnt expected to live past the weekend.The hospital arranged a special bed for her to have at home[ one that rippled] so that all her friends and family could visit her.On the saturday we went to visit and she was able to chat quite a lot with us,but by sunday afternoon they had to put her on morphine,we again went to visit her on tues but by this time the morphine had been upped and she was asleep the whole time ,but we did continue to speak to her and we also held her hand in case she knew we were there. She passed away the day after we last saw her very peacefully.It was very sad but she had been through a lot with great dignity.She had been through enough and even on the saturday she said to me and dh,s other sister" i hope this dosent go on for too long " She got her wish,she had suffered enough.

maybe just send cards/photos/drawings from the children for now...sometimes you can say subtle things in a card which maybe hard to say out loud.

I lost my mum to ovarian cancer a few months back...she was in hospital after surgery where they were unable to remove all of the cancer so we knew it was "terminal".. she was expected to come home in 7 days...go back for chemo in a few months and just see what she got...we "imagined" she would get a year or so?

However she didnt do well after surgery and we never got a prognosis until the the day before she died...which ranged from a couple of months, to a few weeks, to a week, to the end of the weekend...she was gone a few hours later. All of the expert opinions varied and this was within 12 hrs of death. I am pleased she didnt get the "best" prognosis at this point she was so ill, in so much pain my first thought was 2 months is too long. My only point really is that all may not go to plan. Be prepared for a tough time. I am still taumatised by my mothers final hours. They were very bleak...but I am relieved that the sun did not rise on another day of this horror. Take care of each other at this devasating time.

i am very sorry that you and your family find yourselves in this situation.

So sorry Hermykne. There's some great advice on here.

If I were going to leave my children I think I'd like someone to put together a book about me with photos and pictures. Lots of real memories to bring me back for them to know.

I am very sorry to hear about your sil.Lots of good advice given on here.

Both cancerbacup and Macmillan organisations can offer good support and advice for patients and relatives alike.Cancerbackup have a website and also a freephone number on the site,I think it is open from 8-8 and they can offer support and counselling.Hopefully the hospital she is in has some kind of pyschological support service.

As far as what to say,I would be guided by her.From experience with people with end stage disease,some want to chat about "Normal life",some will want to talk about their illness and preparing for death,take it as it comes.The important thing is to be there for her,and take each day as it comes.She may have "Good days" when she can chat and things or other days where she will be sleepy and incapaciated.I don't think there is necessarily any "Right or wrong" in this situation.

Additionally "16 weeks" is a very precise figure,and it could be that she could hang on a little longer or it could be sooner,no one can say and everyone is an individual.

I am so sorry you are in this situation xxx

,mumsnetters thank you so much for your very kind words, and really brilliant advice, i will be using it all in the wks ahead.

I am so sorry to hear this hermy, its an awful situation to be in. My friend's sister died recently of a similar thing and she really needed reassurance that the whole family would be there for her children for the long term. She needed to know that she would be talked about as a real person and not put on a pedastel as some wonderful saint for her kids to have to try and live up to for rest of their lives. She wanted to keep her memory very, very real for her children. She wanted ressurance that she would not die alone. She also planned her funeral.

I am not saying this is what your SIL will want but my friend's sister really, really needed to talk and be understood and be reassured.

Perhaps in the meantime you could write her a letter. Tell her how much she means to you and what you will be able to do to help her family cope with her loss.

So sorry