Hello ladies
I am fairly new to the secondaries side. I got my secondary dx late October with some bone mets and then 2 weeks ago got the second whammy of my liver joining in (in fact it had been iffy in November, but due to a few reasons I never got to hear about it then).
When I had my primary dx just over a year ago, I talked about it with my then 5 year old daughter. We read the book “Mummy’s Lump” and she did my lymphodeama exercises with me, drank my fresh juices and understood a bit about many of my treatments.
Now, she is obviously aware that I am not well and that I have had surgery to my spine and it is all breast-cancer related. She doesn’t know about my liver (but not many people do) and wouldn’t understand about it anyway as that is advanced biology for a 6 year old. But she does talk of doing things “when I am better”.
I know that we none of us know what the future holds and I sincerely hope that I get to join the Stable Mabels soon. but the reality is that I will be on Cap or some other drug for the rest of my life and the chances of me ever having the same energy levels/capabilities as her friends’ mums is pretty low. She is very understanding of me sometimes using crutches etc and I don’t want to scare her, but I do feel that sometimes I am “lying” to her. So, how much have any of you felt you need to share with any young children? And how do you tell them that mummy is never going to be completely well again?
Sue
Can anyone see this? Or do I need to bump it to make it visible?
Dear AmysMum
You may find it helps to talk this over with our Helpline staff. Opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000. Calls are free and confidential.
Very best wishes
Janet
BCC Moderator
Hi Amysmum
We’ve also got a list of resources on this topic on our website here Search Results | Breast Cancer Now
It includes books for parents/carers, books for children and some useful organisations and websites.
Best wishes
Leah
Hi Sue,
the information that Leah refers to above is very good. Also, you may be able to get more information from your hospital team on this - where I am there is a family worker in the hospital specifically for people with cancer and their children, who has given me some excellent advice at tough times. Perhaps worth checking what support they offer where you are?
all the best
christine
Thank Leah (and Christone)
I will probably buy a book or 2 (or maybe borrow them fro the cancer info centre at the hopsital if they have them).
I had forgotten about the family worker at the hospital. I didn’t really need her during my primary treatment, as we didn’t really need any practical help and Amy coped very well. We are still fairly OK on the practical side, but although Amy knows that I am not completely well, she is not aware of the long-term prognosis. I guess introducing her to the family worker now might be a good idea, so she is familiar with her when she does need her.
Sue
Hello Sue
What a tough call to make - how do you explain something so difficult to such a young child. I remember your post saying that you could longer lift her - that really bought home the grim reality of this disease.
Getting advice from the experts, as Christine suggested, is a really good move they will be able to give you some guidance and be there for Amy should she need it. I worked in a Hospice setting up a county wide bereavement support organisation and Children and families definitely benefited from Family workers being involved from an early stage.
the only other thought is to possibly deal with explaining your illness on a need to know basis. answer all questions simply and honestly avoiding adding more than the question demands. Sometimes children (and adults) need to digest a block of infomation before moving on to more. A friend of mine had aggressive Lymphoma - when she was undergoing treatment her daughter asked her if she was going to die - she said that everyone does die sooner or later and she was going to try and not to die for a longtime. I must confess I felt like crying when she related this conversation to me.
I know Amy will value having you by her side, even if you can not lift her physically. You are being a great Mum to her and that will stay whatever happens.
Sorry for being so slow to respond to your post - fear of putting my foot in my mouth.
Hold you and Amy in my thoughts - Jacquix
Hi ssue sorry only saw this now. I had chemo today so will be brief. 
I have a 5 and 7 yr old. Original diagnosis in 2008 when son was 11 months. Recurrance in sept 2011.
We tell them I have bad cells. The doctor gives me strong medicine to help control the bad cells but he can’t get rid of them entirely. I tell them when I have my strong medicine and that it makes me feel tired. I am lucky in that I find the treatment bearable. Outside of that I am superwoman. I try and do as much as I can with them and keep the medical part of my life away from them. I don’t want them to have their only memoriesvasca poorly mummy so I do all of my medical stuff and resting while they are at school. I won’t lie it’s a bummer but as long as we keep the lines of communication open and try and let them be children as much as possible then we are doing a good job. It breaks my heart. Wishing you and us all strength and healing xxx
Just to add swanie speaks a huge sense x