Hi all,
After reading this very emotional thread I have asked that this thread be brought to the attention of other members of the team to read and assess.
Kind regards,
Jo, Facilitator
Thanks - as you are aware - us secondaries do feel very much like cinderellas. Services seem to be set up when you are first diagnosed and when you are terminal but the inbetween ‘living with secondaries’, there is so little support especially for the children.
Kate
I would really like help with this topic, as how do you explain to a 4 year old that mummy might not be around and how on earth will she cope with it. Am so frightened for her and how she will get over it, I know they do, but how … My 18 month old is too young still. My heart is being broken into thousands of pieces over all this crap and I am balling my eyes out right now. Think I am having an emotional day today.
Dawn
xx
I know we have a forum for family, partners and friends. Maybe we could have a bit of the website specifically for children? Hmm…
Jenny.
Hi Dawn & eveyone.
Dawn I am sending you my big hugs, at present I seem to be having more emotional days than so called normal days! I know where you are coming from! I am scared how my kids will cope and if they will be able to move on(so to speak)
My daughter is very sensitive and gets very emotional and my son bottles it up or his emotions come out as anger. My husband OMG how the hell is he going to cope, at present he works shifts, so that would mean he would have to give up his job! I am having a hard time at the mo even talking to the OH about anything connected with “C”. He even keeps putting of signing the documents for the life insurance so that they will pay up… I am not sure how I am going to deal with this. I have not talked to the children that the C has come back in my liver and that I wont be around to see them grow up, as at the moment I am mum and have no outward signs of the disease, except baldness of course! I think that I will know when the time is right…
Sorry for going on
Mel
xx
Hi i think it would be great for children to have a site like us when i am out of hospital i will catch up and offer my help ! i put a post on , i have been called in hospital tomorrow booked me in for operation Brain tumour Removed friday …i feel so selfish as all i do is cry my children are hurting to and i dont no how i can say the right things i kept them up with late was this for or them ! i know i have to get through this but they have no one if i dont … what do i say before the opertion to reasure them x i love them so much it hurts…sophie
Hi everyone,
Haven’t been able to post a reply back as this thread is so emotionally hard to read.
Have been thinking though about the lack of support/information out there for children and wondered whether any of you have thought of getting together to put together some sort of booklet/book/pack that would help as unfortunately you really do have first hand experience of what this nightmare is like.
When I was pregnant first time round I read a book called ‘The Fat Ladies Club’ which was written by 5 women who had met in their ante-natal class. They also wrote a second book called ‘The Fat Ladies Club’ - Facing the First Five Years. Sadly, one of the mums died from cancer (can’t remember exactly which type of cancer but don’t think it was breast cancer) so it does touch on the subject of bringing children up without their mum.
There was also the young teen who wrote ‘Chemo and Cakes’ about her experiences of going through cancer treatment and again because of the lack of information for her age group she decided to put together this book - J K Rowling insisted on presenting her (I think she was called Chloe) with a Pride of Britain Award.
Love to you all xxx
I’ve ordered the Dear mum, from you to me journal for my children and also found one for me to complete for my sister. They don’t do one for husbands and I would like to do one for my mum but don’t know whether to get the Dear Daughter one. Has anyone seen inside that one? Will have to cobble one together for my husband i think.
Struggling a bit with some of the questions - like what sort of animal I’d be and as for the bit about the future achievements and dreams, it just makes me cry as what future do i have?
Kate
Jo - facilitator
i brought this subject up at the launch of the new secondary video at Westminster and despite Joan Bakewell trying to get the panel to answer my question about the lack of support for children, no- one would answer. It is obviously a big concern to a lot of us here so I and I’m sure everyone else would be grateful if you could bring this to the attention of your Trustees and Management teams.
I will have to listen to again to the part of my podcast that you broadcast, as i know I talked at length about my children and how they were coping on the actual recording - I realise it was too long to broadcast the whole of my recording but it might be worth your team listening to that as well.
I await with interest your or a trustee/mangement response.
Kate
Hi Kate,
I ordered ‘Dear Mum’ for me and also ‘Grandparents’ Memories’ by Julie Pinnell, to give to my Mum. There are a series of books by her, aimed at all the rellies and I think I prefer the format to the ‘Dear Mum’ one. (May give this to my little sis who will be forty in two weeks and order Julie Pinnell for me.) Have a look on Amazon.
Have to agree with Kate again, in that any pertinent question that was asked at Westminster seemed to be skirted around, in order to stick to the agenda they had decided on. (Key workers.)
Jenny.
I wish there were some way that an organisation like BCC with your huge resources could take ideas proposed by people with breast cancer, run with them and actuallly DO something.
I was at BCC Cancer Voices event on Friday and I used this thread as an example of the wealth of knowledge and experience which people with breast cancer have and how hard it is to get BCC to respond quickly and effectively to ideas proposed in such threads.
It seems to me (and I don’t have children) that the women who have contributed to this thread have provided the makings of a really rich resource to help others struggling with how to talk to their children about their illness and eventual deaths.
Some kind of booklet/on-line resource would be great…it just needs someone to pick up the ideas explored here and run with them…fast. Everything seems to take for ever at BCC…taskforces, and consultation events, and meetings, and promises, and long lead ins for leaflets, and agendas which never change but don’t move forward either…it is so so frustratiing…particularly on a range of issues which affect women with advanced breast cancer who want more than workshops on tying headscarves.
I think Swissmiss’s idea of a group of women writing a resource about and for children is just great…and surely part of BCC’s role should be to make this happen.
Jane
hI all
I decided at the start of my dx I would be completly honest with kids (14, 11, 9) and I was, but now just been dx with brain met I feel this is too much for them. But I’m terrified they will find out off someone else. I’ve told family its on a strict need to know rule, but I have such a large extended family I’m worried. I really can’t tell them this yet
Liz x
Hi everyone
Thankyou for contributing to this thread, I will forward your comments on to the relevant people and we’ll get back to you as soon as possible.
Kind regards
Lucy
Found I was thinking about some of the issues in this thread lots, as I travelled round the country this last week. Decided there were really 3 parts to it, and which parts children could deal with at any one time depended hugely on their age.
Felt there was an issue over just helping them cope with the current treatment and the fact that we can’t do with them as much as in the past. Part of this is obviously knowing that things have changed but how much info to give them at any one stage is really difficult. Just as you were saying, Liz, sometimes it just seems too much information to give at that moment.
Also the issue of how to prepare them for our death and when to start that - time is such a complicated concept and young children are really not going to understand the uncertainty of when it might happen.
And finally how to prepare things that will help them after our deaths ie memory boxes etc. This is what my older “children” can’t cope with at all but obviously from what several people have said, younger children like to be involved in etc.
Have also been wondering whether my special needs background could help, Cathy, with some ideas for your son. Have got some vague thoughts which I will email you.
Think the idea of putting together some kind of resource is great - hopefully BCC will move forward with this one.
Kay
This is great Kay, a breakdown of the issues instead of just the blanket problem.
Thanks,
Jenny
x
Hi
Just wanted to say thanks for the “breakdown” Kay, makes a lot of sense.
Take care
Liz x
I am really finding this difficult at the moment. My last scan results were not good and I have now srarted Xeloda, in a way I have calmed down as treatment is now under way and I find that it is the period in limbo that is worst. I have had major rants at my teenagers for not pulling their weight (lying on the sofa watching Friends while I heave the shoppig in ! ) and I find it hard to deal with the fact that while I know that they are worried sick about me and the future they will still exhibit normal teenage behaviour.
I do still want things to carry on with as much normality as possible ,but feel that we probably all need some sort of safety valve, perhaps in terms of counselling. The kids school have been very good in the past but I may also see if our local cancer centre has any resource aimed at young people
My Best Wishes to everyone coping with this problem
Kathryn
I know what you mean Katie as my son is now 20 but he’s lived with this since he was 7 (mets 4 years ago) but he just won’t talk except to ask me how my scan went etc which I’m always honest with.
My breast care nurse (who is also a friend) has offered to talk to him but he doesn’t want to, also the uni have offered but he’s declined that as well.
He’s not depressed or unhappy and I’ve come to realise that he’s actually dealing with it in the way that’s right for him. Not many of his friends know about me and when I asked him he said it was because he doesn’t want them to treat him any differently.
I can understand this as my mum died at 46 to breast cancer (I was 26) and I didn’t really want to know much because I so desperately needed her to be well (bit of an ostrich really!) but that was how I felt at the time.
In lots of ways when he was 7 it was easier because we just told him I had bad cells and he accepted it at face value.
hi Kay and everyone
I cant remember who started this thread - but thanks for it , because you brought to the front what is our primary concern and seeing how everyone deals with it or finds it difficult is a help.
kay - I will look out for your mail, I am in New York at moment for work (really!!)
and dont have access to my prvate mail so it will be a little while before I see it.
love to all
cathy
Hi Cathy (and others!)
Haven’t actually had enough brain power to think through my thoughts and email you yet Cathy - and now you’ve given me a reason to delay it even further! My excuse is that I am preparing for 13 transition reviews at the provision where I work, (all at the beginning of next week!) and that is taking up all my available brain power!
New York sounds exciting but also tiring - hope you are managing to enjoy it.
Interesting what you said, Carol, about being a bit of an ostrich when you were dealing with your mother’s illness. It’s what I feel about my 3 really (particularly my son who is 23). He says he has put “it” in a box in a corner of his mind and will deal with it when he has to - in fact he added “when you are ill”. I did correct that! But it explains as well the lack of help around the house (and the trail of glasses/shoes/beer bottles/crisp packets etc). A little unfair on him perhaps as he will always help if I ask him to do something specific. He definitely wants though (and needs?) things to continue along normal lines for as long as possible, which is after all my own way of coping with things. I just haven’t been able to move him on o my “new form” of normality. Complicated isn’t it?
Love to all K xx