I am hoping to put together a leaflet and I am wondering if you can help with any comments you can add.
After my experience of how people - husbands, children, family and friends were with me when diagnosed and going through surgery, chemo and now radiotherapy I thought it would be good to have such a leaflet, maybe to give out at diagnosis to the family which will help to deal with how the patient feels and the support they need at that time, such as emotional care, being careful how you word things, compassion etc.
Thanks - its just from my own upsetting experiences and I think that the only time the whole family may actually sit and read any literature is when they have been hit with the diagnosis and want to learn and to help the patient.
Hi Liz i think that is a wonderful idea, have you thought about approaching this site re-them doing a piece on how you would like to be a part of the information that they give out at hospitals? to do this on your own would cost so much money, i really think you need the backing of a large organisation to help you, unless you are just planning on targeting your own hospital, but it is really good for newly diagnosed women to hear from other bc patients on how they have coped and what to expect. let us know how you get on
Alisonxxxx
Do you have a cancer network group (the patient partnership part) in your area? The only reason why I ask this is because they are the ones that could really help in doing this and you would gain a lot more input into creating a leaflet and backup with producing it.
I did a ‘life after treatment’ booklet with the input of some of the health professionals, we had it funded by the Cancer Network Board and it now goes out to all patients (regardless of whether they’re breast cancer patients or other types of cancer) once they’ve finished their treatment.
Some of the charities do produce booklets (such as Macmillan and Cancerbackup) but it’s knowing that they exist in the first place and patients aren’t always made aware of them.
Backup do a free leaflet for families affected by breast cancer and I think Breast cancer care recently produced one for partners, it included a gay couple I know
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Thanks for your input. I have a friend who suggested I do this leaflet after my experiences and she has NHS knowledge and has spoken to some contacts and they think it is a good idea but it looks like things have been covered before. I will let you know the outcome.
Thanks Lucy for your info too.
Love to you all. (off for rads now - 3 more to go !!! then herceptin for a year )
There’s a really good book by Deborah Hutton called What can I do to help? published by Macmillan. Written by the author when she was terminally ill with lung cancer and packed with good ideas (plus contributions from a mixed group of the great and the good…including Tony Benn, Mo Mowlam, the Bishop of London, Ruby Wax, Rabbi Julia Neuberger.) My only critissm of it is that the author seeemd to have an enormously large circle of tremendous freinds and neighbours ready to cook tasty meals at the drop of a hat…not everyone’s experience!
Good idea Liz but I’d say don’t reinvent the wheel…there’s already a lot of good stuff out tthere.
I really like the Deborah Hutton book but it is a little bit ‘Country Living’ as Jane says. Huge amounts of home cooking left on the doorstep. It is also full of what not to do to help, which is great. A picture of Deborah hugging her young daughter haunts me still.
I have picked up really useful info on this subject at hospital, there is plenty to choose from and it is quite prominently displayed.