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

(70 Posts)
MissM Mon 22-Sep-08 13:19:36

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?

norksinmywaistband Mon 22-Sep-08 13:21:22

I have no answers for you, but couldn't let your post go past without me saying my thoughts are with you and your family.

I am hoping someone who can offer you some comfort and advice comes along soon

MissM Mon 22-Sep-08 13:23:56

And another thing - how is it that complete strangers can be so kind (thank you norks), but people who are supposed friends are too afraid to even ask me how he is? I feel like saying 'you're not going to bloody catch it if you just bloody ask!'

PoorOldEnid Mon 22-Sep-08 13:25:23

can you spend the time putting together some sort of memory book or scrapbook of photos together

and look through it with him before he dies?

MissM Mon 22-Sep-08 13:27:42

He doesn't want anything like that. He wants to talk, a lot, but he also wants to get on with the business of living while he still can. He loves his work and what he does day to day and wants to do everything he is able to until it becomes impossible. Maybe photos later, but right now he just wants to live in the now.

Thank you for the suggestion though. It is a nice one.

Technically it's called 'end stage management' but that's not going to help you. It's horrible isn't it? I spent a lot of time nursing my granny and just wishing she would get on and die because she was in such pain and we were all so tired.

I'm sorry your brother is dying. He sounds like he has so much in his life than he's being ripped away from

You can only take one day at a time and try to concentrate on the time you have left together.

It may be worth talking to MacMillan Cancer Care as well, they did wonders for me, just listening and telling me that everything we were going through was normal.

GooseyLoosey Mon 22-Sep-08 13:27:46

People are afraid to say the wrong thing so they say nothing. If you asked a friend if you could talk to them, I bet they would be relieved to know what you wanted and needed.

My heart goes out to you and your brother.

janestillhere Mon 22-Sep-08 13:27:46

The weird thing is when you look around at everyone else going about their everyday business - you want to scream at them DON'T YOU REALISE WHATS HAPPENING TO ME???
But you don't...you do just get on with it. Because we have to. We have to try and be strong for the person who is ill, yet when you leave, your heart breaks again.
I just wanted to say sorry you are going through this, you WILL survive, the world WILL go on when he goes, but NOTHING can take away the bank of wonderful memories you've built over the years.
The crap times you will remember, but they do fade alittle, honestly.
xxx jane xxx

noonki Mon 22-Sep-08 13:28:12

What a terrible time for you all,

I have little advice too I'm afraid,

but a friend of mine who lost her sister to cancer said that the period before they died was the most stressful time of the whole event. On a positive note she dis say it gave them a chance to talk about things that would never had been brought up if she wasn't ill sucha as that once they managed to have a chat about their childhood together and had a bit of a laugh at realising how different they saw some events.

so sorry for you and all of your family x

I don't know what to say MissM, sad but is your brother under the care of a hospice? Our local hospice has a wonderful outreach service that helps to support the families of their patients as well as providing a lot of practical help for the patient themselves, especially with such things as pain management.

ingles2 Mon 22-Sep-08 13:29:15

Am so very sorry MissM sad
That's a very good idea though Enid. you have a chance MissM to make final memories, and to help your brother finalize things, and say things to those he loves.

policywonk Mon 22-Sep-08 13:29:25

I'm sorry, MissM.

I think this period is called grief. In my experience, in this sort of situation there isn't a big transition to a different sort of distress when the death happens. You are already grieving. It's just that at the moment you are grieving with him, and when he dies you'll be grieving without him.

It is unutterably shit. Do you have children? They are the one thing that makes it a bit less shit, I think.

I think friends/acquaintances don't ask because they don't want to make you cry. If they make you cry then they have to deal with the fact that you're crying, and most people are very uncomfortable in that situation. It doesn't make them bad people though.

PoorOldEnid Mon 22-Sep-08 13:29:37

I meant the scrapbook for YOU actually, not for him.

it will give you something to do.

OrmIrian Mon 22-Sep-08 13:32:01

So sorry MissM.

When FIL was dying DH went into deep depression and ended up on prozac and had counselling. His counsellor told him it was a common reaction - in expectation of bereavment, and not being with his father all the time he wasn't able to 'keep busy' in the way that his step mother was who was actully looking after him. It was bad afterwards too but in some ways less painful - the blow had fallen I suppose.

Wishing you strength sad

onepieceoflollipop Mon 22-Sep-08 13:32:46

So so sorry MissM. I have no words of wisdom but couldn't just ignore your post.

The only thing I would say (and this is not an excuse for people) is that in these circumstances I might find it hard to know whether your brother just wants to spend time with very close family, or if he would like to see friends too. People do worry about intruding and whether it is the right thing to do.

They might realise that the person doesn't have long, and sometimes it is hard to know what to do for the best for the person who is dying and for close family etc.

I really hope I haven't worded that insensitively, apologies if I have.

paddingtonbear1 Mon 22-Sep-08 13:33:22

so sorry to hear about your brother MissM. My mum died of cancer a few years ago, and we knew she would die months before she did. Her last weeks were very hard, especially for my dad and aunt who were with her all the time. I'm not sure what you can call it, this period, you just have to get through day by day, some days are better than others (for you and them).
You may find that some people close to you avoid the subject because they don't know what to say, they don't like to upset you. I never minded being asked about mum (a colleague used to ask me about her every week), but for some funny reason felt awkward about discussing it with dh!

ingles2 Mon 22-Sep-08 13:36:22

Dpending on the amount of pain he's in.. why don't you organise some special days. Revisit old places, have a picnic, go the beach, that sort of thing. It might help you all cope with this horrible waiting.

FanjolinaJolly Mon 22-Sep-08 13:36:59

Miss M

So sorry to hear about your brother.xx

In answer to your question I'm afraid there are no easy answers.I think you are totally right though and what you are feeling is totally normal,it is a hideous limbo period.Nothing anyone can say will make it any better xx

You say he feels he has very little time,has he been able to discuss his wishes with you,his loved ones?Are you able to discuss your feelings with him openly?

With regard to his pain control is he being regularly re-assessed by the medical/Healthcare team?

Is he currently undergoing chemotherapy,for palliation,or is he currently receiving blood product support?When his is very anaemic or his blood counts are flat this could be making him feel worse with the fatigue and pain.

For yourself have you been offered any kind of support or counselling?The specialist nurses cna be available for families as well as patients.Not everyone wants this but if you feel it would be appropriate you could probably access them for support.MacMillan and Marie-Curie can also be good sources of information.The Cancerbackup may also be of some help.

wotulookinat Mon 22-Sep-08 13:37:01

MissM, I'm sorry that you are losing your brother. I lost my sister 4 years ago to cancer, and the part where she was ill and we knew she wasn't going to get better was bad, and I kept waiting for a miracle.
I know exactly what you mean about friends avoiding the subject. My best friend avoided me all together and we have barely spoken since. I think they just find it awkward and don't know what to say.
I wish I had spoken to my sister more before she went, though, but I felt awkward too.
Please make the most of this time with your brother.

MissM Mon 22-Sep-08 13:38:00

I feel like I'm grieving really. I just go through so many emotions every day and most of all I want to scream STOP but of course I can't do anything to stop it. There is no way to 'prepare' for his death, all I want to do is to stop it from happening and take his pain away. He's not under hospice care - I think he wants to avoid that for as long as he can because he is finding it hard to face up to it. He hates the words 'palliative care', was dreading hearing them from the hospital.

I have started to write down my memories of him before he got ill because I was finding it hard to remember that time.I actually find looking at early photos of him quite tough right now.

Why do these things happen to the people who have the most to live for? I don't know anyone more intelligent, more talented, more full of life and joy and excitement at what the world has to offer than him.

Oh yes, I do have children thank goodness. They are the reason I get up in the morning and carry on. They're very young and don't really understand - my toddler just says 'mummy be happy' when I'm crying.

MissM Mon 22-Sep-08 13:42:29

I keep hoping for a miracle too, but the hospital have told him that al they can do now is to help keep the pain under control.

His friends have actually been wonderful. I don't ask for big long heart to heart from people, but if some people just dropped me an email saying how are things and how's your brother that would be enough.

Anyway, that's not the thing to get hung up on. All I want to do now is just be with him all the time. There are just too many things I want to tell him and talk to him about. I am so sorry to those of you on this thread who have lost someone too. I HATE this illness.

wotulookinat Mon 22-Sep-08 13:45:49

It is awful, but your kids will keep you going. My son was born 2 years after I lost my sister - and I wish so much she had got to meet him because she really wanted me to have kids.
Spend as much time with your brother as you can and talk, talk, talk. Create some memories now that you can think of when he is gone - even if it is only sitting together and sharing a smile xxx

minibar Mon 22-Sep-08 13:46:00

Hi Miss M I coldn't let your post go by without saying how sorry I am for you.
My aunty is in the same position as your brother I think - she has cancer and is fading. I think you're right - this period is so hard - I am grieving with my aunty for the life she has lost, if you know what I mean - the things she won't have and the last two years of her life which have been so terrible for her as she dealt with her treatment and failing health.
I have a book about palliative care which is quite good - it is written by a p care nurse who says one of the worst things for her patients is often the pain they witness on the faces of their families and loved-ones.

She suggests trying to talk to person who is dying, to share the memories that belong to the both of you, to help your brother accept that he is dying (apparently many families say things like "when you're better we'll do this or that").
An that most important is to reassure your brother that he won't be alone and you'll be with him at the end and love him to the end.
Sorry for the ramble.......you can borrow the book if you wish....I hope someone else comes on with more sense than me...

Sycamoretree Mon 22-Sep-08 13:48:46

I went through this with my father from Nov to Feb last year/this year. Words cannot describe the agony. As they deteriorate, you begin to question the wisdom of a health system that cannot in any way assist the inevitable. I spent the days wildly vascilating between denial and torrential grief. I REALLY feel for you Miss M. There's no answer, and I know you know this, but it's important to be able to just vent the agony and frustration somewhere, so I hope this thread enables you to do some of that.

How is he at the moment? Is he still up and around? Can he still do stuff, or is he now bed ridden or at a hospice? I just tried to spend the last months of Dad's life saying yes to as much as I could and enabling him to carry out all the little things he felt he needed to before he could "rest", no matter how silly they seemed.

What no one tells you, is that it's impossible to talk to your loved one properly about what's happening, because it's just too cruel. What are they going to say? It hangs over everything - all the usual niceties of life are utterly irrelevant. I thank god for his grandkids and the welcome distraction they provided and the opportunity for lighthearted conversation in the face of such adversity.

Thoughts massively with you through this incredibly tough time.

Countingthegreyhairs Mon 22-Sep-08 13:50:05

So sorry to hear you are going through this Miss M - it's tough - and your brother sounds wonderful, a real fighter ...

Went through something similar with my father and although he did everything in advance he could in a practical way (wills/finances etc) he couldn't really handle it emotionally (old school = didn't want to talk about it) and it left us all a bit "in limbo" because we were half pretending everything was normal when it REALLY patently wasn't. You are doing the right thing by just following what your brother wants. It's hard though...

This is a completely off-the-wall suggestion and may not be right for you but how about doing something creative for yourself? Something that takes concentration like sewing or knitting or learning to play the piano or similar? It sounds like madness but I only suggest it because I had loads of anxious, excess energy at the time when my father was dying, sleep and relaxation were impossible and I found sewing a tapestry really soothing because I had to concentrate. And I had a special "heirloom" I could look at afterwards that reminded me of him. It's not for everyone though I know so forgive me if it's the last thing you feel like doing.

Sending positive thoughts and prayers x

Habbibu Mon 22-Sep-08 13:54:49

MissM - couldn't read this thread and not post. I agree with pw, though my experience of this kind of thing (what a stupid phrase! my apologies) is limited - I think you are grieving, and it's compounded by feeling weird about grieving someone who's still around. I'm so sorry you're all having to go through this - you and your brother sound just great. Wish I had words of wisdom...

Heifer Mon 22-Sep-08 13:58:38

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.

Minniethemoocher Mon 22-Sep-08 14:19:36

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.

MrsBates Mon 22-Sep-08 14:39:40

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

mumof2222222222222222boys Mon 22-Sep-08 14:57:27

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.

Onlyjoking Mon 22-Sep-08 15:08:01

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.

MissM Mon 22-Sep-08 19:27:56

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.

Onlyjoking Mon 22-Sep-08 21:37:13

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.

MissM Tue 23-Sep-08 09:27:06

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).

yorkiemom Tue 23-Sep-08 18:40:47

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

Crunchie Tue 23-Sep-08 18:58:24

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

MissM Tue 23-Sep-08 21:22:53

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 sad

yorkiemom Thu 25-Sep-08 20:39:45

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

lovecamping Thu 25-Sep-08 20:53:43

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 ...

mashedbanana Thu 25-Sep-08 21:27:09

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

MissM Fri 26-Sep-08 00:01:59

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.

LovelyDear Fri 26-Sep-08 00:18:37

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.

pushki Fri 26-Sep-08 17:59:47

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.

MissM Sun 28-Sep-08 21:24:48

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?

Cammelia Sun 28-Sep-08 21:32:07

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 sad. 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.

daffodill6 Sun 28-Sep-08 22:06:59

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

MissM Sun 28-Sep-08 22:07:37

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.

Cammelia Mon 29-Sep-08 14:23:53

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.

newgirl Mon 29-Sep-08 14:40:07

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

MissM Mon 29-Sep-08 21:59:07

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!

Blandmum Mon 29-Sep-08 22:03:58

So sorry to read your news.

YOu will cope, for the hardenst of reasons, you don't have ano option sad Are you linked up with a Macmillan Nurse and/or a local hospice? they can be great at helping people to live until they die.

Dh managed a balloon flight a week before he died.

But it is hard for you. Sending evey best wish

MissM Tue 30-Sep-08 16:24:04

Does anyone know about anything that is written about this time before someone dies? There's loads written about grief and bereavement, but I can't find anything that I can relate to now. Except the kind of things you guys who have been through it are saying. There don't even seem to be any books (I mean fiction) that describes these feelings. Or perhaps I'm not looking hard enough.

Can't see my brother until Thursday and I'm finding that tough.

pushki Tue 30-Sep-08 16:53:42

Miss M - just checking this thread again today and sorry to hear your brother is not so good - and scared. That was one of the hardest things to deal with when my brother said to me "I'm scared" - at the time I just hugged him and said we were too, but that we were all with him and loved him so much. Was that enough for him now I wonder - just as he did not want to talk about dying I did not want to bring it up - but I do replay that moment with him a lot and somehow wish I had had the strength myself to ask him a bit more what he was scared of. But others have said that maybe that was enough for him to feel loved and with all his family around him. I will never know - we were incredibly close as the only siblings - he probably was protecting me as much as anything as my big brother!! You asked 'how have i learnt to live with his loss?' Thats not easy to answer as I still don't think I have truly, 5 years on. No one apart from my DH would probably know how much it still hurts and how angry I feel still for him and his family. Not having any other siblings as well has left me with this incredible feeling of lonlieness - inspite of the love of my DH and my two boys and parents, a difficult thing to describe. Growing up all my life with my brother - there's something so so special about that relationship. Of course I try and look at the positives - like yours, he packed a lot in - ironically had reduced his work hours just before being diagnosed so he could be at home more and go mountain biking. He felt he was at the best stage of his life I remember him telling me a month before diagnosis. Sorry - I hope this is not too sad for you - but you asked?!!! I am thinking of you lots x

tengreenbottles Tue 30-Sep-08 18:32:04

I looked afterr a young man who was dying of cancer and he said that the time before you go means you get to say goodbye to people and plan your own funeral ,so you arnt sent off to really dreary or tacky songs ,he fancied smoke gets in your eyes at his cremmation ! He was a really lovely funny bloke and it was a real privelage to look after him . Spend all the time you can before with your brother before he moves on to whatever it is we move on to

MissM Tue 30-Sep-08 21:46:26

Pushki I found your message so moving. My brother said on Saturday he had nothing to hold on to now, nothing comforting. I told him that so many people loved him that he wasn't alone. He said that was a comfort - I hope so because it's so true. At his wedding there was so much love for him and his wife it was quite overwhelming.

I am so sorry that your brother was your only one. My only comfort when I feel so unhappy is that I have another brother and that there are two of us to help one another through this. All three of us are very close and I feel such relief that I won't be left alone. I am so sorry that you were, and I can relate to what you are saying completely. Anger is probably my main emotion, that and helplessness.

MissM Tue 30-Sep-08 21:48:01

He also said that he didn't want to leave us all behind. I wanted to say 'we don't want you to leave us either', but I just couldn't. Having read what you say again I think I need to try to say it to him.

pushki Tue 30-Sep-08 22:34:36

Miss M - thanks for your kind words especially when you are going through it all at the moment. I think you should try and say that to him - as his sister whatever you say with love will mean a lot to him I'm sure. Absolutely heartbreaking - I think the worst thing is the fear that he is scared, lonely, in discomfort. Just try and be there with him, touching, hugging him, just being quietly by his side - it must be a great comfort when it is from the people he most loves. Look after yourself, do what feels right at the moment.

Jennalee Tue 04-Nov-08 20:21:38

I found this post by typing in my brother is dying. I was looking for someone who could understand what I am going through. My brother Jeff is 43 he has head and neck cancer and only is expected to live another few weeks. This period is so hard for our family we are all so devistaed by this. We only found out he had cancer 3 months ago. Everything has happened so fast and we are all still in shock. I don't know if it will help to know someone is going through what I am but I am willing to find out. My brother is very precious to me, he is my little brother. We have had some incredible talks and I am spending all the time I can with him. But I do want to find someone who knows how I am feeling about losing my brother.

pushki Tue 04-Nov-08 20:44:19

I'm so sorry Jennalee to read your post about your brother. Sadly there are a few of us on this thread and a couple of others who have lost a brother. My only older brother died aged 40 just over 5 years ago now from prostate cancer (sadly younger men do get this disease as well). We had a year after diagnosis till he died - but he went downhill very rapidly in the last month - so came as a real shock in the end.

It is just bloody horrible - no real comforting words to ease the pain at this stage - you are doing the right thing by trying to spend as much time with him and you will really value that and the talks you are managing to have. I still wish I had spent more time with him in the last few weeks, so do make the most of it - he will find it so comforting I am sure to have his big sister with him.

Just put everything else on hold if at all possible at the moment, accept any help from friends, take some time off work , and also make sure you look after yourself and the rest of your family. Have you got access to anybody like Macmillan nurses/ hospice? We didn't unfortunately as no one really predicted his prognosis that accurately and do wish he had more in the way of palliative care - although ironically our mum has worked in as a nurse in a hospice for over 30 years - so she knew really he was dying and looked after him so well - can't imagine how hard it was for her to know what was going to happen.

Keep posting if it helps and will keep in touch to offer you any thoughts and support. Take care.

MissM Thu 06-Nov-08 19:56:22

Jennalee I've just seen this after coming back to this board after a bit. My brother who is the subject of this thread died on 17th October of non-Hodgkins lymphoma. I wish I could help you feel better but I can't. The period before he died was dreadful, now it is worse But it does help to speak to people who know how this feels. I don't know anyone in RL who has lost a sibling and although friends who have lost parents can empathise in some ways it's impossible to know how it feels to lose your little brother. I started my eulogy at his funeral with 'He was my little brother'.

It's agony, but I hope that as I start to come through this initial phase I will remember that some of the last times I spent with him were good. Please spend as much time with him as you are able and don't worry if you can't think of anything to say. Just be his sister as you always have been and say what you need to.

I wish I could make you feel better. I am so sorry that I can't, and that you have to go through this too.

VaginaShmergina Fri 07-Nov-08 22:12:06

Excuse me jumping in but I found your thread some time ago MissM when you first posted and have had it on my watched list.

I am so sorry you lost your brother, my deepest sympathies to you and your familiy.

I too have lost a brother and other young members of my family and am currently on a thread for bereaved siblings that another MN'er has started up, I foolishly have started typing this before getting the link.

It may be of some use to you or others who have posted here to post on the other thread. I am 19 years down the road from losing my brother, but I can tell you it's a bumpy and unpredictable one.

Again my sympathy to you all and I will go and get the link now.

VaginaShmergina Fri 07-Nov-08 22:13:08
MissM Sat 08-Nov-08 17:00:50

Thank you so much. I will have a proper look when I don't have a toddler sitting on my lap! Have had a very low day today - it's just so unpredictable how I'll be from one day to the next at the moment. But I guess you know that.

JenCraig Sun 09-Nov-08 22:13:21

I am so sorry for all of your losses. I appreciate all of you for responding to my above post. I don't feel so alone and I know someone is out there with hope of making it through this. I changed my nick name so if your confussed this is Jennalee. Thank you to all of you who care.

VaginaShmergina Mon 10-Nov-08 17:54:06

Jennalee/JenCraig, how is your brother, how are you doing ?

cookiemonstress Thu 13-Nov-08 12:52:04

I just wanted to say thank you. THis thread has saved my day. My mum has terminal ovarian cancer and after a bit of good spell, it is now moving fast and aggressively. It's a matter of when and not if... She lives a long long way from me which makes it hard to process. We found out the day after we returned from holiday in september and although on the surface I have been dealing with it, underneath I have deliberately kept it at arms length because it's too big to process.. This week however i have had a series of small anxiety attacks and felt as if I am going mad. Reading this thread makes me realise that what I'm feeling is fear and grief and I am not loosing the plot. In a short ten mins it has focussed my mind on what i need to do now.
I can't write much more as am shortly off to a meeting and in danger of crying at my desk but my thoughts go out to everyone on this thread and I want to say thank you again for sharing your stories. I can't tell how much that has helped me today.

sphil Wed 17-Dec-08 09:32:54

I have found this thread a great comfort too. I've posted about my Mum's terminal cancer in 'Health' because I didn't think I could post here until she dies. But this says so much more about how I'm feeling. My mother isn't outwardly ill yet - just more tired than usual - but we've been left in no doubt by the doctors as to the severity of her illness. She hasn't seen the cancer team yet (due to hear about appointment today) so we've had this weird week of limbo where it's become increasingly hard to believe that there's anything wrong.

evansmummy Wed 17-Dec-08 10:15:34

JenCraig, how are you and your brother? Thinking of you xx PS Do come and post on the thread that was linked above when you feel ready.

KimiKay Fri 19-Dec-08 00:46:07

My mother just passed from lung cancer after a long bout of kidney failure and I have to say that there is no feeling you have while this is happening that is not justified. The only difference I guess is that due to the kidney failure, she wasn't always "with us" if you know what I mean. I prayed and prayed and cried for just one more day, one more hour before she passed that she would look at me and know who I was, who my children were, tell us she loved us. Two weeks before she died, I had two hours where she knew us. She said she knew she was dieing, but she wasn't afraid. She was ready to go. I can't say for sure what its like to lose a brother, but my mothers death has changed me in a profound way. I had to decide to stop all heroic measures, but I felt it was what she wanted. She was in pain, she didn't know where she was and all we were doing was making her die longer. So, we decided to stop all medication except for pain meds on a Monday----a very tearful Monday. Each one of her children had their "moment" with her. Can I say without anyone thinking I'm crazy that I could feel her pain, her anxiety, literally. She had an irregular heart rate one night in the middle of the night and took her to the ER. There was no time to call me, my sisters just took her. At that very moment, I woke up out of a sound sleep because I felt my heart like it had went down the hill of a rollercoaster and all I could see was her face. I knew she was dieing and I jumped out of my bed and fell to my knees in pain, the pain in my chest was so intense. All I could say was "My momma, something is wrong!" and he begged me to call but I was too afraid.

Another night, I heard her call my name like she was in my kitchen, the way she would call my name when I was a child and she was looking for me to come in for supper. I had countless dreams of her reaching into the light to take someones hand, I don't know who, but she would look at me and pull back. The night she took a turn for the worse, I was already awake because I had a dream that she was creeping into the light and turning to look at me like "is it okay?". I was crying my eyes out when the phone rang. The nurse said she was showing all the signs that it was the end. But I knew before they did.

What I can tell you about a terminally ill loved one is that they know. They know when its time, they need you to tell them its okay to go. They want you to be okay without them. Its okay to cry, but they want to know that you will "forgive" them for leaving. That night I went in to my mother. She was way past speaking to anyone. We sat with her for 27 hours. She had not moved, she just breathed that funny sound in her chest. There was no movement, no tremor, nothing. Suddenly, I felt that feeling in my heart again and I looked up and she closed her mouth. I ran to her and I got in the bed and I held her close. I just started talking in her ear-I love you momma, we're hear with you, your husband is waiting for you and your mother. We will all be okay, we will take care of everything, we don't want you to be in pain momma, you can let go. I told her I would never forget her, I would tell my children about her, how much she loved them, how much I loved her, how much she loved Christmas. She died in my arms at 4:57 pm on September 29, 2008. What I felt was guilty for feeling relief that she would never feel pain again. Happy that her struggle was over, but still so selfish that I wanted her hear with me. I was torn. But what I can tell you is that I know you are sad and you are worried and scared, but you have to let them know that its okay to die, that you will take care of everything and you will never ever forget them as long as you live. My sympathy to you, this is going to be hard. The hardest thing I have ever done was hold my mother in her arms while she took her last breath. But she held me when I took my first, I owed that much to her.

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