My friends, although l don’t post here very often l am an avid reader of posts but am now afraid i need some help. First dx with BC in Sept 03 ( bad case ). I am typing this from my hospital bed as my spinal cord is crushed and spine full of tumours. I had an op on my spine which had complications and actually made things worse. They are now working hard to get me home for my last few weeks/months. l hope l have enough time to prepare everything to make it easy for my husband and 11 year old daughter. l know this is a morbid subject but can anybody advise any reading material which might help me. Any ideas greatly appreciated. love to all xxxx
II am so sorry to read this post - how I admire you for your thoughs for your husband and daughter. The following is a couple of paragraphs from Winston’s Wish - easily found on Google. It may be worth contacting them and they may have publications to help.
Huge hugs and love to you…
Heather
Quote:
If you would like more information, or would like to talk about supporting a child when someone is seriously ill, please ring the Winston’s Wish Helpline (08452 03 04 05).
We have a book for adults supporting a child facing the death or serious illness of someone close to them which is called ‘As Big As It Gets’. We also have a book for 5 to 11-year-olds called ‘The Secret C’ which explains cancer. Both publications can be ordered on-line.Unquote
Jacqui,
Im so sorry to hear that you have reached this point. I feel rubbish as I dont know what to say except that Im thinking of you and you will be in prayers and thoughts (hope you dont mind). I just wanted you to know that you’re not alone, Im sure lots of people will post you today, all trying to give you some comfort and practical help. My heart goes out to your and your family.
Take care,
Pauline x
Hi Jacqui
I think you are doing the right thing to prepare yourself and your family for your dying and death. I don’t think you’re ‘morbid’ at all, although I do think that open personal anticipation and preparation for one’s own death is taboo in this society so it can be hard to do
I’m not in your position (I do have breast cancer) but I have always had an academic interest in dying. (academic sounds cold…what I mean is I have long been interested in the process of death and dying from sociological, philosphical and other perspectives’. Earlier this year I started a brilliant OU course on the subject.)
I love a book by Christina Middlebrook which is called: Seeing the Crab.: A Memoir of Dyimg before I do. Its out of print but you can find a second hand copy of it on Amazon… The author was a Jungian therapist dying of breast cancer, and I think is an extarordinary account, particularly her last chapter which she calls ‘The Dier’
You might also find the poetry of Julia Darling, a poet who died of breast cancer a couple of years ago to be helpful. Google her name and you’ll find her website.
I hope so much for you that you have the time to complete all the really unfinished business you need to prepare…to say all the things you want to the people you love and that they too can say all they need.
my very best wishes
Jane
Hello Jacqui, I’m so sorry to read your news. I have bone mets, it’s not a morbid subject at all, even before our diagnosis we were all always going to die it’s such a shame that it’s sometimes taboo to talk of death. I hope you will be as comfortable and as pain free as is possible. The fact that you have posted here from your hospital bed shows, to me, that you are already making this time easier to bear for your husband and daughter.
Jane has mentioned Julia Darling, I was in email contact with Julia and have some of her poetry books. I’ve kept them and hope my daughter will find some comfort from them one day when I’m no longer here.
I had a very close friend who died last summer from bc mets. She had young children, one close to your daughter’s age. I have seen and know the children are coping well. I hope this posting helps.
Lots of Love Jacqui.
Belinda. xx
Hi Jacqui
I dont come into this forum usually as i am not brave enough, if that makes sense.
However i do want to post here.
All the other posts are great and i hope will be a comfort and help to you. I just love Julia Darling and have her on my favourites on aol.
when her diaries were done on Radio 4 it was so moving and fantastic.
Jane i would be very interested in your course you have done about dying. do they ever mention religion or an after life??
I know you don’t believe in either from some postings i have read.
One book Jacqui I would recommend is the Bible. I know you may think i am crazy but it talks about death so much but gives hope for an after life.
I am NOT a religious nut and would never throw my relgious beliefs down peoples throats, but consider it.
I have seen many friends and my own mum die, they all had a faith which i feel helped them.
My own Mother looked forward to no pain and heaven.
I have questioned God so much and probably still will but i know when i face the end i will face it believing in an after life.
My Mum was in Marie Curie unconscious with a morphine drip. a guy from her church was singing to her a song ‘Turn your eyes upon Jesus look full in His wonderful face and the things of earth will grow strangely dim in the light of His glorious face’ She smiled the most wonderful smile. died the next day but i honestly know i will see her again.
Sorry if this is a bit much for some people but the good thing is we are all different in our beliefs and i hope folk dont mind me sharing.
I respect those who dont believe as i do.
thinking of you hun
Ruthxxx
Hello Jacqui,
Sorry to hear your news and you are being very brave. Unfortunately, this isn’t a disease that just kills older women but also young women with school age children.
If you also need a list of practical stuff to do, this might be useful:
direct.gov.uk/en/Rightsandresponsibilities/index.htm?cids=Google_PPC&cre=Rights_and_Responsibilities
Best wishes,
Holey.
hi jacqui,
have no reading material to recommend.
But wanted to say how very sorry i am for you and your family that you have reached this point.
My thoughts are with you.
karen x
so sorry to hear off you in this way , we all wish you happiness in your new life pain free . i have lost 2 friends with this awful disease and their children have done so well their mums would of been so proud ! as you will be off your daughter and husband. smile they will always remember a smile ! take care hugs and kisses sophie
Hi Jacqui,
I have no great answers, I just wanted to let you know that I am thinking about you. I am overseas and don’t have my own computer connection, but felt an urgent need to come on today and make sure that JaneRA was ok. I never knew you were poorly.
I did read an interview once with a women, who I think starred in the movie ‘My life without me’ and she said that she wished that her Mum, who died of cancer all too young, had done what the woman in the movie had done (I think that she wrote letters to her children for each of their birthdays until they were 21). I am not sure of the exact story line though, because the movie has always been one I have avoided.
Best wishes,
Christine
You are not being morbid, I’m sure most of us have given our death some thought. I have recently been spending quite a bit of time sorting out things for myself and truly feel better for it. I’ve planned where I wish to be buried and taken my family to see it, a woodland burial site. I’ve written down my wishes, not exactly a living will but about not wanting prolonged stay in certain hospitals etc. I’ve chosen music and poetry and the type of funeral I’d like and I’ve also written down practical points for my husband about pensions etc. and monies he would be due. It hasn’t been easy but my family have felt so much better having the onus taken away from them.
Good luck, it’s not easy but hope you feel better for giving these things some thought. I also found the ‘natural death handbook’ a helpful read.
Love Twinkle xoxo
just to say i admire your strength, i too have written my wishes for my funeral, this i did when i was first diognosed, mychildren are grown up now the youngest is 17 oldest 35 so im not in your position re your little one i myself am a spiritualist and truly believe we never die but are always near our loved ones even if not in human form. i know everyone does have differant veiws on afterlife , i do wish you and your faily all the best and will send up a prayer for your ease of passing. much love to you .lynn xx
All is Well
Death is nothing at all,
I have only slipped into the next room.
I am I, and you are you.
Whatever we were to each other,
that we still are.
Call me by my old familiar name,
speak to me in the easy way
you always used to.
Put no difference in your tone,
wear no forced air of solemnity or sorrow.
Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word
that it always was,
let it be spoken without effect,
without the trace of a shadow on it.
Life means all that it ever meant.
It is the same as it ever was;
there is unbroken continuity.
Why should I be out of mind
because I am out of sight?
I am waiting for you, for an interval,
somewhere very near
just around the corner.
Memories
Memories are the loveliest thing,
they last from day to day.
they can’t get lost,
they don’t wear out
and can’t be given away.
God Bless you Jacqui …Linda xxxx
Jacqui
I have no words of wisdom but I just want you to know that you and your family are in my thoughts. My own battle is only just beginning.
Lots of hugs
Fiona
Jacqui
You are being incredibly brave and practical. I was told I was close to death so I did all the practical stuff re:
Made a will.
I’m in a pension scheme so made sure that HO had all of the up to date stuff.
Checked that my address book was up to date and that my husband knew where it was.Also that he knew where all important paperwork is.
Stared writing a ‘mummy manual’ in a loose leaf file - just writing everything that I could think of - it was very comforting - eg what size my daughter is and what are the best clothes shops, where to get her hair cut, how to do the washing, recipes for some favourite meals, thoughts as to what I would have done for my daughter’s wedding, list of people to contact on my death. Just anything that was on my mind.
My husband and I visited a local funeral director and they took us through what the choices were - I did this because my husband and his family have never had to deal with this before whilst I have with my parents/ grandmother. I found this useful but simply telling your husband your thoughts is enough.
Winston’s Wish gives ideas for a memory box which I have been adding to, however if possible, just try and do some little things together which will form a nice memory - my daughter just loves to bake cakes with me.
I also got some help from my Mac Millan nurse and was appointed a social worker which is where I was advised to do the above.
Try and be as open as you can with your daughter - never lie to her. You know her best. Children are incredibly resilient, in fact they often may appear selfish in these circumstances thinking how this all affects them e.g can’t go out as often .
Lastly be kind to yourself and don’t expect to get everything done - you may not feel well enough or simply find doing some of the above too upsetting. Also prioritise those closest to you, and accept any offers of help.
My thoughts are with you and your family. I hope that you can keep strong.
Lots of hugs
Ruth x
Hi Jacqui19
Im also sorry to hear you are reaching this stage now, I too am preparing as the doctors have told me I have a poor prognosis and after a month in hospital just about got home and comfortable, not sure for how long but taking it day by day which is all we can do now.
I dont have children so cant really comment but preparing my husband, dad, sisters etc has been hard but finally I think its hitting home that I dont have long and things need to be organised.
What I have done is written a comprehensive ‘wish list/instruction list’ for when I die for my husband, it says all things on there from finances to things like what to do with my clothes and personal things . Its on the computer so everytime I think of something I just add it on as I go. Its about 4 pages now!! It makes me feel better knowing that he wont have to think of much afterwards as its all there.
The only thing that I have read that may be of interest kind of explains what might happen after death is called “same soul, many bodies” by Brian L. Weiss. He has done many past life regressions, its an interesting read and definatly opened my mind.
Thinking of you
Take care
Love LaraC
HI Jacqui and Lara
I am drawn to this section every time I come onto the website and I pray to God that I will be as brave as you 2 ladies when my time comes.
I have nothing to add but just want you to know that probably lots of ladies are reading your messages as we all know one day it is going to be us.
Lara, I would definitely have to put an instruction list for my husband - we have lived in the same house for 25 years and he still does not know where anything is! I think my instruction list would be miles long but I would happily do it if it helped all my loved ones when I am gone.
Thank you ladies for sharing your thoughts at this sad time in your lives.
Love Roz xx
HI Jacqui and Lara,
I think you are being very practical and thoughtful of your family. I know someone who made a booklet with thoughts and photos for her young daughter with reminders of things they had shared or done together. She also did things about thoughts for the future, and wrote out special poems etc. I even may start to do something along these lines for my children as my prognosis is 6 months to 2years. However, I am hoping and expecting the longer period.
Big hugs to you.
Treakle xx
Hi Jacqui and Lara,
Just wanted to send you both big hugs. I found this rhyme conforting when my Grandad died:-
Our Family chain is broken
Nothing seems the same
But as God calls us one by one
The links shall join again…
Love to you both
Katyx
My dear friends, thank you so much for your words of support and advice. I am still in hosp but they are hoping to get me home in a week or so and hopefully be able to manage in a wheelchair for part of the day. I do feel ok about dying the hardest part is leaving the ones you love to cope but deep inside me l know they will . I have taken on board your ideas about poetry, memory boxes etc and dare l say l am almost looking forward to planning my own funeral ( l was always a bit of control freak ). Nobody can really give me a timescale so l guess l am in Gods hands. If you girls don’t mind I will continue to keep you updated as l always feel you know and understand my thoughts more than anybody else in the world. love to you all . Jacqui xx