Correct usage of the "End of Life" forum?

Forgive me if I’m a touch oversensitive as I experience the worst deterioration of my health to date and fear that I may not see the year out. However, my understanding was that this section of the forum was for people with secondaries to discuss the matters which concern them regarding the end of their lives: how to communicate with young ones and loved ones, memory boxes, hospice care, funeral wishes, approaches to death etc - things that worry us about death and its approach.

Personally, I don’t think it is appropriate to use this section of the forum for any other type of discussion. Please think about the message your post sends when it is posted here and consider if it really is the correct category to use.

I find it distasteful and distressing to see messages of support (well-intentioned, I know) in the End of Life section of the Secondaries Forum instead of in the usual places. For me, the message I read is “you are dying” “we know you are dying”. It does not need to be spelt out any further by putting it in a category called End of Life. To be at the end of one’s life is a very frightening place to be but you still need a bit of hope. Some of us have come back from the brink in spectacular style. Don’t write us off in the End of Life hole.

There is a section called In Memoriam (or, In Memory) which is the correct place for tributes for forum members and family members who have died.

This is just my humble opinion and I speak only for myself. I don’t intend to be confrontational or cause offence - just provoke some thought.

x

Ripley,

I agree with you. I have secondaries but do not feel that I am likely to die in the near future, so will not be posting in this forum just yet.

When I really do feel my time is up, I don’t want to hear from anyone who doesn’t already know me well and that communicate should be made privately and directly.

Holeybones.

Is it me you are referring to about the Debsincornwall post??

If it is, please explain what i have done wrong again!! Which section should i have put my post in?

Surely the end of life is something we all look to, particularly with secondaries.

i was trying to offer a hope for the future, not to write debs off now. I am desperately hoping and praying for more time for debs and all of us.
I just wanted to encourage people to offer stories of spiritual hope.
Dealing with death is something terrifying to everyone but if we cant talk about it on this thread, where can we??
I was always told the way to deal with fear is to confront it. “Shake your demons by the hand and invite them in for tea”.

Also the notion of love and symbols like butterflies is something I hope to discuss with my 12 year old daughter.

I am sorry if i have upset anyone.Julie xxx

LOL Juliet - I am asking “is it I”!! I posted news of the loss of Deirdre here cos there are so many forums I didn’t spot the In Memory one when I was looking. Also there was the thread about the death of Geobar as well. Obviously both of those threads are in the wrong place and I think someone did ask if the Moderator could move it to the correct forum. No response there from mods! I would be quite happy for my thread to be moved to In Memory. But I don’t think we should get too hung up on where posts are put.

MODERATOR PLEASE MOVE my ‘Farewell Deirdre’ thread to the appropriate forum.

dawnhc

Ripley, Hi, I’m Molly.

i was always the class clown and it was considered quite shocking news that I of all people were on their way out!

it was a shock to ME and it’s taken me a year to get my head around it. A friend did a nice thing. she set up a group on facebook for people to post memories and photos while i was still around to laugh and appreciate them rather than talking about me in past tense after the inevitable has happened.

it’s really distressing to see those words cos up until the last few month i’ve been laughing doing stuff and fighting like a trouper - smiling at the well meaning but patronizing messages of hope fron bone fide well-wishers! i’ve felt really poorly since march.

i’m 39, and i’ve never asked why me?! but i DO grieve for the time i’ll not get to spend with my gorgeous husband of 3 years, and i DO get upset when i think i won’t see my 3 cheeky little nephews grow up and ring their aunty from town in promtu and invite themselves and their mate for tea… And am i crying while i’m typing this? Too bloomin’ right i am!

AS the year turned, i got an hinkling that 2010 would be my last. And as it’s spread to my brain, no matter how good i feel, i could go at any time… everytime a seizure starts i think it… it’s a blessing to wake up being lay on and squashed by my cats next to the husband who vowed to stand by me ‘in sickness and in health’ …

let’s have some health please, let’s have a fine summer - let’s make as many memories as i can. Im 40 next year AND it falls on a Saturday. You see that’s fate - i was meant to celebrate…X

I cannot find the words to express my feelings towards my diagnosis of breast cancer. I know I should not be on this particular site as I have primary breast cancer but more than likely will reach the final stage at some point. Why have we got breast cancer? Why can they not cure it? why is there not a dignified way out? Two years into my diagnosis and I still feel so bitter so angry…

Bi Yellow, please don’t waste the life you have left however long or shirt with negativity. I know it’s hard when nature/God has selectedyou to bear this dreadful disease. My Aunty (unrelatd - dads sister in law) got it 2 years before me and she’s fine.(8 years remission) Look at Kylie , Caroline Monk andOlivia Newton John. Just try to carry on with your life as tho it never happened. I know it changes ur outlook on life - but try to make it positive and make the most of everything. Please look up a poem called Slo Dance by David Weatherfiield. If it says young girl with cancer hoax it’s the same one. Since 05ive lived my life by it . Hope this helps you. They say if we live to be 90 then 1 in 3 women will get BC. It’s frustrating that something almost as common as a cold has no cure but that’s it unfortunately?! Me personally I blame processed foods and try to buy organic now. A friend at hospital cut out dairy 5 years ago. Fit as a fiddle and only on herceptin. A report she read about Chinese/Asian women don’t get BC as they have no dairy in their diet?! Look into thngs by all means but please don’t let this blasted disease take over your life. Don’t allow it to beat you! I know I’m going but nobody said I had to do it quietly! Big kiss Yellow X

I think the Slo Dance poem is very apt. Yellow, there are no guarantees with life - how long we will live or how good our health will be. Cancer is horrible, but there are many other killers out there too. I watched my father, aged 48 die from a stroke and my mother from heart failure. You have had primary breast cancer so hopefully no spread. You many never get secondaries or if you do, you may be so old that you will die of something else before. You say there is no “cure” for cancer and strictly speaking, there isn’t. But there are loads of different treatments that work well for many people and allow them to live a reasonable life. Try and live for the moment - easier said than done, but otherwise you will miss out on so much,.

Hi Molster / cathy59

thank you so much for your comments. I am coming up to the second year of my diagnosis and getting a little scared and still tend to rant. I feel that if there was a prize for bitterness anger and hatered I would win it hands down. My wish is that one day women will no longer die of breast cancer and that if will blasted out of the atmosphere for good. love to you all.

One of my best friends died recently[jax 1961] and one of her other friends read the poem ‘Slow Dance’ by David Weatherford at her funeral.It sends a message to all of us I feel.

I’m having Slow Dance read at mine for the very same reason. I wrote one myself called Girl anterrupted. I was 3 and angle when I was first diagnosed., my personal circumstances have handed since by I was about m worries and concerns at the time x

Sorry, I lose my site with double vision and that didn’t make sense. It should have read… I WAS 33 and single at the time of writing the poem and my personal circumstances have changed since then xxx