My brother is dying. What do you call this period of just hideous horrible waiting?

[MissM]

After people die it's called grief. What is it called now? Because in my opinion it's worse - you spend time with them and chat to them and don't know if it'll be the last time.

I put a message on here in July saying that m brother's cancer had returned despite a bone marrow transplant and lots of treatment. He feels now that he has very little time - he is in lots of pain and finding life a struggle. He got married three weeks ago and it was the most amazing weekend. Every time I'm with him I wonder how I will survive without him in the world - how the world will go on without him. He has everything ahead of him and a happier and more fulfilled life than the majority of people I know.

What is this horrible horrible time, and how are we supposed to deal with it?

The one piece of advice I wish I was given when my mum was in this position was not to put of hospice care until later..

It was a godsend when my mum actually agreed to go in for a week to help with pain relief. She kept putting it off thinking it would be a step towards the end, which she wasn't ready for. It was far from that. The rest did her a world of good, her pain relieft was sorted which made such a difference when she came home for another 5 months or so.

It also made her realise what a lovely place it was, and actually changed her mind about where she wanted to be at the end. This is the same person that made me promise when my dad died that I would never put her in a home, care etc.. as she hated the rest bite care my dad had to have (this was before my mum had cancer).

It was a lovely place, they helped all of us come to terms with it, and made the best of the time she had left.

Miss M - so sorry.

My only experience of this was being told that my Dad was dying and I did grieve for him before he died, because I knew that I was going to loose him soon, but you do feel weird already grieving for someone who is still alive.

My Dad had a brain hemorrhage and was left paralysed as a result, so I think that I was grieving for who he used to be before he was paralysed ...hope that makes sense and thinking of you.

I have lost a lot of people to cancer too, including my parents and best friend and agree that this time is also grief. My friend was 27 when he died following a failed bone marrow transplant and he too was full of life, love and fun. We spent a lot of time getting on with being alive, even when he was exhausted in hospital. He preferred people to be happy when they were with him and save their tears for other moments - often outside with the amazing nurses. We laughed a lot, despite everything. He used to say that no-one knew exactly when they would die and he wasn't going to stop living just because he had a better idea than most.

This pre-death grief is hard too because you are afraid of what will happen and how much pain there will be. For him there was little pain, he just got more and more tired until everything shut down. My Dad too had a truly peaceful death surrounded by love. Terribly terribly hard though and no escape. But it sounds as if you have a loving family and are a fantastic sister. Your relationship with your brother will not be at an end even when he dies although you'll miss him beyond words, he will always be your brother and the memory of love can give you courage at unexpected times.

You sibling is closer to you genetically than anyone and I can't imagine how it would feel to face losing my own brother. Follow his lead and don't hold back on telling him how much you love him. And take care of yourself too - this is a hard time and it can take its toll on your own health. My sister in law is fighting a brain tumor at the moment and I can see the strain for my husband. Depending on your mood this may seem like a trite use of empty words but I still do believe as Philip Larkin said 'What will survive of us is love'. As time goes on it feels more and more to me that that is true. x

The help you can get from hospices is amazing. I agree totally with Heifer. My mum died in our local hospice in Leeds 13 years ago. She didn't want to go in, but when the time came, they were wonderful. So wonderful in fact that my father is still heavily involved with that hospice to this day.

I feel for you at this time. The last period with my mum was awful...I still hate to think about it now. My thoughts are with you.

i think this time is also called grief, grieving starts from the diagnosis and continues until who knows when.
you will get throu this bit your brother will be your motivation, you may look back and wonder how you got throu it but you will do it.
my husband died 15 weeks today from cancer.

Onlyjoking I am so sorry to hear your news. How are you getting through the days? Thank you all for your kind words. We also spend so much time laughing together - he has a wonderful way with black humour and a mutual friend has called his life an inspiration. When I am with him and my other brother I know that there are no other people in the world that I love and know as much as them (the love for my children is different).

I am afraid of the amount of pain he may experience - he is afraid of it too. MrsBates it helps to hear how peaceful your dad's death was. I wish the same for my brother. I worry about my other brother - they are so incredibly close, have travelled together, share things that no-one else can know. I think he is afraid of completely falling apart.

i think what we found helpful was making memories for me and the kids to keep, we had lots of picnics on steves bed and watched dvds and had the kids birthday partied on and around the bed, we took lots of photos and videos too, cant watch the videos yet but one day we will.

I am so sad for you Onlyjoking. It must be very tough. Videos sound like a good idea, although I'm not sure I could watch them for a while either! I hope it starts to get easier for you eventually. (I was going to say 'soon' but I can imagine it gets harder before it gets easier).

MissM, my heart goes out to you. I have just gone through the same thing with my dad, who died on the 10th September. He too had cancer, and as soon as he was diagnosed in Jan 2008 the greiving started.
I really think that this grieving does start even before the person goes.

It is very sad, and sometimes the pain seems to much to bear, but somewhere you do find the strenght to carry on.

The only advise I'd give you, is to spend as much time as you want/can with your brother, and tell him everything you want him to know. I can take a little bit of comfort knowing that my dad knew how he was loved.

You should'nt worry about your brother being in any pain. My dad had a syringe driver fitted, and this really did get his pain relief under control. Your brother should be the same, and all the nursing staff are really good about this, and your brother should be made as comfortable asd possible.

We kept dad at home, and he passed away very peacefully in his own bed, with his own mom and dad, his 8 children, and his wife (and macmillan nurse) all by his side.

I know how painful this is, and I wish you lots of love and strenght xx

OK I will say my peice, my mum is dying too. She was diagnosed with Throat cancer and liver cancer about 16/17 months ago. It was never going to be curable only 'containable'.

So what am I calling the time I have with her now??

It is the MOST PRECIOUS time I have ever had with my mum, I am telling her everything, my hopes/fears/dreams, I am telling her how proud I am of what she gave me - my strength of character comes straight from her. I am talking about how lucky I am I have had her as a parent, how she enabled me to live a happy life, in fact it was my mum and dad who gave me the ability to be happy with my lot!!

This time is the opportunity to make extra memeories, to do fun stuff - we went for tea at Fortnums with the kids in the summer.

For my children too it is a special time - they are 7 and 9 and know Grandma is ill and will die sooner rather than later - hopefully at least another 6 months. For them they just love spending time with her, I don'thave many memories of my grandparents - they died when I was 6 and 8. It was sudden for my grandma and I regret not knowing her at all.

I am sooo thankful for these extra months, it is the chance to imprint on me and my kids minds what my mum is like.

I know it hasn't got to the really bad stage yet, she is not in too much pain all the time, and she is coping well so far. But we do talk about plans for the future, we do laugh and joke in a 'black' way. She thinks it funny how my dad is finally clearing up his study after YEARS of nagging. He has already said he will move when she goes

So be thanksful for everyday, do crazy stuff, see movies/plays, go and try great restaurants and visit places if you can. It is a horrible time, but as I have said to my mum I am happy to have every extra day - but she is not allowed to die before February as I have no free time in my diary until then

Crunchie you are right, and the last year with my brother has ironically been one of the best we have ever had. We have done some wonderful things and laughed a lot. I have valued every second I've had with him and every phone conversation. It's just now that it's come to a matter of weeks, or perhaps even days, that it has become so painful and hard to bear.

Yorkiemom I am so sorry that you have just lost your dad. Your message is so dignified and comforting - hard to be when you must be feeling so dreadful. Thank you.

My brother had a fit today which means the cancer is now in his brain. He told me that this was his worse fear. He was just begging for just a bit more time, just a bit more

Oh MissM I know the pain you are feeling, and I feel so dreadfully sorry for you.

I don't think anyone knows exactly how long they have, but wnen you know its not long, you have to grasp every moment.

I wish there was something I could say to make you feel better, but unfortunately I don't have any miracle answers. All I did in your situation, and even now, is to just take things a day at a time.
When you feel like crying, have a good sob, you are allowed to feel angry and sad.Then dry your eyes, and give your brother a big hug.

I wish you love and strenght xx

MissM - i dont know what to say. reading yr thread and some of the posts is making me wonder about my situation.

my sister died suddenly about 13 mths ago and it still hurts most days. i feel angry and upset that i never got a chance to tell her how much she is loved. i often wonder what i would have done if we had know she was dying. i do wish i had more time with her - you are probably wishing the same thing.

if i had my time again and had a little time before she died, i would have told her every day how much she meant to me and helped her fulfill any and every dream she had.

infact, my dad has serious health issues and me & my other sister have promised that we would make his life better in anyway we could - the small and big stuff. we recently brought him a garden chair because his old one had broken.

sorry that i've rambled, i'm so sorry ...

i'm going through similar with my aunty.its really hard isn't it.she wants things to go on as normal but i find it hard especially talking about the future knowing she won't be here to be a part of it.you will be in my thoughts take care xx

The cancer is in his brain now - I was there today when the consultant told him that his fits are being caused by the tumour and possibly others. The only option is radiation on his entire brain - which might or might not buy him a few days or weeks. Or nothing. What kind of choice is that? Very very exhausted, very very sad. Don't want this to be happening to anyone.

So so sad for you. I lost my Mum to cancer and had a year or so with her when we knew they couldn't cure it. she was elderly, so the difference the illness made to her everyday life was less that it must be for your brother, if you see what i mean. i can't imagine the thought of losing one of my brothers or sisters. i certainly didn't get any sadder after she died, it was just as bad in anticipation as it was in reality. is that comforting? maybe not. but don't worry too much about the pain control, the hospice or nurses will be able to help tremendously. just look after yourself, make sure you don't expect too much from yourself for a long while. your children will be surprisingly robust. mine were 1 and 5 when she died and saw me crying A LOT but i don't think they remember at all.

MissM - feel very sad for you and have some idea of what you are going through. My brother died aged 40 from prostate cancer 5 years ago now - and what you have said about your dear brother sounds so sadly familiar. I think it is a form of grief - the knowing he is going to die but not when or how. Like yours, my brother did not want any palliative care and did not like to really talk about dying - I found the most comforting things for both of us were just spending time together. He would tell me how much it meant that I and our parents were around in the last few days - doing simple things like giving his feet a massage! I have felt since he died bad that I did not talk more to him about things and tell him how much he meant to me - if I had that time again I would try to do that. He and your brother again sound similar - so positive about life, kind, ironically incredibly fit even when diagnosed and a loving father to two little girls. None of it still makes sense and its all crap basically - and lots of other swear words. So sorry to hear that he now has brain mets - my thoughts are with you and your brother and family.

To everyone who has offered such kind words. I have been with my brother and our family this weekend and it has been unbearably painful. He is shockingly thin and the tumours are visible all over his body. The radiation he is having for his brain has left him exhausted and feeling hopeless. That is the worse thing - seeing him having lost hope. His hope and positivity and energy has seen us all through the last year and seeing him broken is the worst thing there is. We know we have hardly any time now. My children kissed him today and the toddler danced to his music and he told me how much he loved to see that. I keep telling him how much people love him - how many people love him - to try and help him face this with less fear. He is very scared.

I felt angry today seeing people walking around getting on with life. Angry that they could do that and he can't. It isn't a nice way to feel.

Pushki thank you for your message. I am so sorry that you have been through this too. How have you learnt to live with the loss?

MissM I've been there too, right where you are now. My brother died when he was 40 from canacer. We had 3 and a half years from diagnosis (terminal, chemo bought him some time) till he died. It was living in limbo, I felt. Knowing the inevitable but not being able to do anything about it. It was still a shock the day he actually died even though we knew the time had come.

This was 7 years ago this month.

So sorry MissM . I have a little idea of what you are going through, as my DB has was diagnosed with advanced colon cancer four years ago, though he is in remission at the moment.
I wish I could offer you some comfort, but there is nothing to say except to wish you strength to deal with this.

Cancer is awful but also amazingly liberating. I've lost my mother and best friend in the last ten years to this appalling disease.

In the final stages its humbling but in earlier stges it does allow you to do the things you've always dreamed of. ie sod it all!!

Mis M - enjoy the time you have .. go to the places where there are memories, spend time with important people, help make momentoes for the future but ..for me.. no one lives forever and what you have now is not a rehearsal Keep strong.... keep positive

He also had four years from diagnosis until now. It helps to know that we aren't the only family going through this terrible thing, but I wish that none of us had to. Doesn't it feel so horribly helpless, that things are rushing towards the inevitable, and you are utterly powerless to do anything except watch.

I am so sad to hear all your stories.

daffodil, you're right. The living in limbo was how it felt for my brother's wife, siblings and parents.

My brother did lots of things with his 3 children that he had originally planned to do at some point "in the future". He packed loads into those 3 years, including skiing down a black run he'd previously been too scared to do.

MIssM - i am in tears reading this. All I can say is that you are not alone - i went through this painful time with my best friend earlier this year, and others have posted here too. People may not always say the right thing but lots of us know how much it hurts and how much you want it to be different.

take care of yourself too x

My brother has also packed more life into the past four years than most of us will do in a lifetime. His life is an inspiration to his family and friends. I am looking at a photo of my niece and daughter on a weekend we all had away back in August and am realising what a wonderful time we had, and also how much life has to go on. I guess I just have to read back on this later and remind myself!