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Life-limiting illness

What to do / what to say and more importantly what NOT

11 replies

forumdonkey · 20/03/2016 11:57

I've come across the boards for help and advice. I am in search of how best to support my friend, 40, who has just been diagnosed with cancer, primary unknown. I was reading another thread and interested to read real experiences of what people appreciated and positively hated, eg 'breezy texts - how are you?' etc

To all you lovely posters who have been there or supported loved ones please can you give me your honest experiences of what helped and what you positively hated.

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throckenholt · 21/03/2016 14:59

Ask her what she wants - let her take the lead.

So basically just let her know you are there for her in any way she wants and let her decide what she wants (it will likely change over time).

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forumdonkey · 21/03/2016 17:36

Thank you throckenholt It was on the back of another thread on here but I didn't want to hijack that one. Posters said they hated the breezy 'how are you? Let me know if you need anything?' texts. I was interested what really pissed people off and what made a difference to them.

She knows that there is no pressure to reply to texts etc and we are going to be guided by her but I can't see her saying 'your texts make me feel like shit' because she'll know they are meant well and wouldn't offend - if that makes sense.

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throckenholt · 22/03/2016 18:43

How about a thinking of you comment, and maybe a hope you are enjoying the sun today, or something along those lines.

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Daffyduck1 · 23/03/2016 18:24

My Dh is terminally ill. What I would love for people to do (but sadly not happening) is:

  • call round to the house for a chat. I find it hard to motivate myself to ring people but find it much easier to talk to someone in person about how I'm feeling. It's nice to have a hug and sympathy. It also helps having less time to think and worry about things or at least get someone else's thoughts on my concerns.
  • take me out for a coffee/lunch without me having to ask/ arrange it.
  • help with the children by taking them out for a few hours to give me time for a bath or to spend quality time with DH watching a film or even just sleep.
  • turn up and tidy the house/attack the huge ironing pile/cook a meal/mow the lawn

-sit with DH while I go food shopping, attend school meetings etc.
You sound like a lovely friend.
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Indantherene · 23/03/2016 19:25

It's difficult. What I hated was the "is there anything I can do?" comments because quite honestly (a) no there isn't, and (b) I don't want to be the one having to think about it.

I think Daffy has really hit the nail on the head. You want someone who will just get on and do something, without your having to ask them. I'd have liked someone to drive me to chemo and back, but DH was looking after DD. Or someone to come over and sit with DD so DH could take me.

We found out about the Chemo Cookery club too late after the event; it would have been nice to have had something a bit special to eat when I was too tired to want to, or had a mouth full of ulcers.

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Imnotaslimjim · 23/03/2016 19:31

Offer something with substance rather than a "here if you need it". Make a dinner that can be reheated easily, or if you bake make some cupcakes so she has something nice to nibble on if she feels up to it.

Don't offer something you can't fulfil I.E a lift to hospital for treatment if you work fulltime and you can't get the time off

You're a lovely friend to be so concerned to get it right

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cedricsneer · 23/03/2016 19:40

My friend has secondary breast cancer and roughly a year prognosis.

She has said that my occasional food drops (large batches that can be frozen/ things that the kids eat), occasional frivolous gifts etc have been good.

She says the single most helpful thing is to preface every text telling her not to feel the need to respond. She also likes talking about what she would like to do to the house/normal stuff we shared before is good. I have also offered to help when she has mentioned making memory books etc.

this blog was really helpful to me.

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forumdonkey · 25/03/2016 00:11

Thank you all so much for your replies. It is so helpful to hear your thoughts and suggestions from your real experiences, it makes a difference to know how to be positively helpful and meaningful.

Unfortunately in the few months she's moved making it more difficult to see her as often as I'd like so text and calls are main communication, which she knows we don't expect reply if she doesn't feel like it. Seeing her is far easier than over the phone and I've seen her tonight and we've had long deep conversation and laugh.

Thank you for telling me all the practical things I can do that will help. I also appreciate knowing what to avoid doing and saying.

This is just the beginning of the journey and she has yet to start treatment so if there is anything that you can add to help me help her I am grateful for even the smallest help and suggestions how I can. We both said this evening how neither of us had any real experience of cancer before now, so it's very much learning curve.

Once again thank you all for taking the time to help me

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whatisforteamum · 29/03/2016 09:44

Hi im sorry about your friend.Both my parents have advanced cancer and the "get well soon " cards pissed them off as they knew they were incurable!!.Cakes have been gratefully recieved and neighbours or my brother cutting the grass when they felt too exhausted from treatment.
For the whole chemo treatment my sis made a hamper with mouth losenges and a music shuffle thing with fav tunes on and things to help make it easier.
They love to be independant however i became the bread and milk shopper.

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throckenholt · 30/03/2016 14:38

Can you arrange food shopping delivery for her sometimes - save her the hassle.

Send her piccies that will make her smile.

Arrange for some audio books ? Maybe should would like to listen but doesn't have the energy to read.

Send her a bunch of flowers now and again.

Just stuff to brighten her day when she is feeling low.

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NellyMelly · 13/07/2016 22:25

Your friend will know that people are trying to be kind and that they might not understand how being asked 'are you ok' is not the best opening statement but the very fact that someone has reached out, itself a supportive gesture and will help your friend. People don't know what to say and nothing will make her feel better so just a nice thinking of you is good to read

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