On Live Chat last night, some of us were talking about how you broach the subject of secondary breast cancer to our children. What have you read/said to them, how they react and so on. Abbey and Izzy wondered if there is more that BCC can do to help us in this area. Spike (of Mummies Diaries fame) was part of the chat and we mentioned the Winston’s Wish website as a useful resource. We also discussed memory boxes. (More than this I can’t really remember.)
For my part, being almost three years down the secondary BC line and still feeling and looking very well, I seldom discuss it with my children who are now 6 & 8 years old. When I was diagnosed they were a little young to understand anything. My feeling is that time scales are very different to children and six months can seem a life time. What is the point of causing them grief at the moment while I am well? They know I attend hospital regularly to stop me becoming poorly and my eldest understands that I have breast cancer.
So, I am interested to know how others deal with this subject. Obviously our children are of all ages and we are at many different stages in dealing with this disease so we are all facing different problems.
Look forward to hearing your points of view…
Jenny
x
Hi Jenny
I too would be interested in what people think etc, and was also on the bcc chat last night. My daughter is only 4 and my son is 18 months old, so both too young to tell too much or understand. Obviously my daughter knows “mummy is ill” and goes to hosptial on a regular basis etc, but doesnt know why or what for etc, or what it means.
Not sure what age I should go into more detail as it is such a hard thing to discuss especially when she really wont understand.
I would also like it if anyone could give me a little advice/guidance on memory boxes. I have got 2 of them which i ordered from Winstons Wish but don’t really know where to start and wot sort of things people put in them etc. Sounds really daft I know, but just dont know where to begin and keep putting it off.
Not much help there eh Jenny LOL. But hopefully we will get some great insight from others and advice too.
Take care
Love
Dawn
xxx
Hi
I’d like to jump on board here too, please.
My son is 9 months old - so much, much too young but…
I was dx with 2ndaries 2 days after he was born and have filled in his Birth Book - it has My Birth Story in it, as well as Mummy’s story and Daddy’s story.
It was truly awful filling it in because we couldnt ignore the fact of dx because the story was sooooo different to others.
But, I feel that when he reads it when he’s older, its a bit heavy going and takes the limelight off him iykwim.
My husband wants me to write himself and the baby a letter each - but that is so difficult too. It depends whether you are having a good day or bad day - and things change. I dont want to write them now if I have years left iykwim.
All advice welcome please? I am truly confused.
I have got a copy of BCC’s Mummy’s Lump to explain the original dx but need something further.
Love and Best Wishes
Anne xx
Hi
My children are older, 17 and 14. As I have posted on another thread I had bad news yesterday and am starting chemo again. I have tried to be open with them, my daughter, (the 14 year old) asks difficult questions about cures etc and I think struggles with coming to terms with the reality, not surprising really! My son gives me lots of hugs and hates seeing me upset. I really feel for him as he is trying to do AS levels. We are all a bit distracted I took them to school today as they missed the bus and then had to dash back home as daughter had forgotten something, very unlike her as she is usually so organised.
As mine are older I am trying to focus on family holiday etc which I hope will provide them with good memories and I fully intend to sort out the photo albums!
I am trying to get hold of old family photos so they have a clearer view of my side of the family
Kathryn
Hi everyone
There is a charity called Winston’s Wish which you might find has some helpful information and advice.
They also have a helpline 08452 03 04 05.
Best wishes
Ann
My son was nearly 7 when I was first diagnosed with primary b.c. He’s now 20 and I do wonder how this has affected him as a person as he probably doesn’t have much recollection of the time before my diagnosis.
When I was diagnosed with mets in 2004 he had just started his A levels and it was really hard having to tell him. He’s a very private person and doesn’t say a lot. He hadn’t even told his closest friends (although his girlfriend told them). When I asked him why he hadn’t told them he said it was because he doesn’t want to be treated differently.
Then in 2006 I became seriously ill with my liver and, again, he was 2 weeks into starting uni. I think that’s been the hardest my husband and I have had to face because at that time I was told I only had a certain amount of time left.
We’ve always been upfront with him right from when he was young although we’ve always tailored the information to the age he’s been. I think I feel quite strongly about this because my dad never told me and my brother that my mum was so ill (she was 46 when she died) and it was such a shock to us when she did and we never had the opportunity to say what we wanted to. It took my brother a long time to come to terms with it (she did on his stag night). He was the same age that my son is now.
When he was younger we had to contend with the remarks of the other children which really upset him, plus the fact that I couldn’t go to parents evening, etc. But there’s always a way round things and the school were brilliant. Also, his university have been brilliant and have told him that if he ever needs time out then he just has to say. I think the bottom line for him (and I was the same with my mum) was that he desperately needs me to be well
Hi everyone
I can’t believe the timing of this thread! I had thought my daughters (19 and 17) were coping very well since I was dx with 2ndaries in April but have been really saddened today to hear my eldest has seen her GP this morning about being depressed and needed counselling. We do talk a lot but this must have been something she felt she couldn’t burden me with. I then spoke to my younger daughter when I got home from work and she said it does get too much at times. She said the pressure is there all the time and it only needs something extra to tip the balance. She’s also going through AS levels but I’m hoping she’s not getting too stressed about them.
I will check out the Winston’s Wish website as I said I would find who they can talk to. Obviously a general counsellor will be OK but I think someone linked to a breast and/or other cancer would help. I’m also going to speak to my BC nurses and support to see what they can offer.
I suppose I didn’t see this coming as I’m coping well with all of this as I did when I was 1st dx with primary bc in 2003.
Oh dear there’s always something extra that we don’t expect.
Nicky
Hi Ladies
I also really struggled what to say to kids and I have to be honest it was the worst thing I’ve ever done. My three are 14, 11 and 9, which I found hard, I probably would have told the oldest in a different way but thought it was best to tell them all same. The secondary dx as it was with others, was the week after the primary, I hadn’t even considered secondaries, and as they could tell something was wrong ( they had seen my mum cry ) after the 1st appt at breast clinic, I jumped in and told them I had breast cancer, I’d have a mastectomy and chemo, then should be O.K.
But double shock and the week later I had to say I wouldn’t be having op.
I told them cancer was too difficult to remove as it was touching the bone and bits of it had gone into other places, so the doctor was going to make it go asleep for as long as possible then each time it woke give me more chemo to make sleep again.
Also thought of memory boxes but also keep putting it off.
Take Care and any new ideas I’d love to know,
Liz x
Hi Nicky and Liz
I can totally relate to what both of you are saying and I don’t think it gets any easier when they’re older because they totally understand what’s going on. I asked our son if he wanted to know when I go for scans, etc and he said yes definitely but he never initiates a conversation. He’ll text me and ask if I’m okay but finds it hard to open up.
My breast care nurse offered to talk to him in 2004 but he said he didn’t want to talk to her. Also, the uni have a support service and he’s declined that so I have to respect that he’s (hopefully) working it out in his own way.
I haven’t done a memory box but have done a ‘letter’ to him which I update from time to time. I started with my childhood and who my grandparents were and really just put down what’s happened in my life. There’s a lot of stuff that I wish I could ask my mum about now (which, at 26 I didn’t even think of) and all that information is now lost as my dad can’t remember a lot of it.
It’s still quite emotional writing it and I was amazed that the last entry I’d made was in September 2006 and how things have changed/improved since then.
Hi
I immediately thought of doing the ‘goodbye’ letters when I was 1st dx with 2ndaries but I kept getting upset, particularly in the car and thought it would be better if I could see where I was going! I talked to my girls at the time and did use the old phrase ’ I could be hit by a bus’ to try and put things in perspective. This was before I read the thread ’ Why are bus drivers so bad?’ (or similar) on here which did make me laugh and maybe I shouldn’t say it. I have decided to put off this side of things until I know things are getting bad and I really hope that’s many years down the line. However I am giving out little cards to them, and my hubby, for special events (exams, athletics championships etc) so they can keep them, but they’re not morbid as they are current and I’m feeling fine. NEXT have a couple of lovely sets of small cards with photos of dogs and cats which are really cute/funny and they’re just the right size for a few words.
Again, I’m trying to keep things as normal as possible for me and my family and I did think it was working - obviously not as well as I’d hoped. My girls were 14 and 12 when I had my 1st dx and accepted what I said and, as I didn’t have major surgery or chemo, I don’t think it affected them so much. Also they are more aware now and maybe have read some bad things even though I told them not to look at the web. I think I will get them to check out these forums though as they have really inspired me and may put things into perspective for them as well - I’ve also had a great laugh at some of the comments.
We are hoping to go on holiday later in the year when I’m over chemo and hopefully this will help them see it’s life as usual.
Take care
Nicky x
Hi All
I really feel for you ladies with very small children, I think myself lucky that mine were 16 and 12 when I was first dx in Dec 2001, and have lots of time with them disease free, having said that it was really hard telling them, we all sat down and obviously everyone was terribly upset, my eldest didn’t want to go to school the next day, I phoned the school and told them and the were very good and explained if the children needed time out or needed to speak to anyone. One teacher even got her sister to phone me as she had already been through bc. Life became normal again for a few years after treatment had finished I was then dx with secondaries in May 2006 my eldest by then was 21 and at Uni and my youngest 17 at college. We made a decision not to tell the eldest until she had finished her exams as was back at home which we found difficult when speaking to her on the phone, my youngest was very upset and thought we had put this all behind us. She still finds it difficult if i’m having a bad day or feel unwell, she is now working. My eldest is very good at being strong for us all but she must have bad days but keeps it well hidden.
Sorry to waffle on, it is never easy what ever the age they do not want to lose their mums.
I watched Mummys Diaries and thought it was brilliant, for you ladies thinking about memory boxes it is a very hard thing to think about and unfortunately can not come up with any advise, I have thought long and hard as to whether I should do one even now mine are older or even write them a letter but what do you say just that I love you with all my heart and would never ever wish to leave you.
Sending you all loads and loads of hugs
Beli x
Hi All
just as for you all -This is a terribly difficult thing for me- but in a different way (as some of you know) as my son is seriously disabled and doesn’t understand. He does just about understand that something is wrong and i am ill but thats as far as it gos, he is 12… I e mailed winstons wish but the advice wasn’t really that helpful for my specific situation, although I would say they replied in a very kind and thoughtful way.
So really I simply dont know what to do or how to handle this one . Its been a bit helpful to me to see that others have the same dilemma but for different reasons,
Would love it if BCC could do something on this.
love to all ,
Cathy
Hi Jenny,
Sorry, feel like I am ambushing this thread as I have a primary DX at this time - but I was just interested in how other people deal with telling their children.
My children are aged 4 and almost 2 - I was diagnosed when I was 30 weeks pregnant with my youngest child having lost my daughter (aged 4) three months earlier to cancer. I haven’t told my children about my illness because having lost their sister I am sure they would automatically think that they were going to lose their mum as well. Like you, I don’t want to burden them at this age but my eldest will be starting school in September and I will have no control over what is said to him in the playground - so do I tell him before someone else does? I try to explain all sorts of things to my children in a manner in which they understand but am at a loss as to what to do here. Any suggestions would be very welcome. Love xxx
We were in a different position when I first diagnosed in April 05. The twins were going to be 8 the next week and my youngest was just 5 weeks off his 5th birthday. Their 3 yr old cousin had died from liver cancer 6 months before I was diagnosed so they knew cancer killed and that was there biggest concern. my son actually calculated how long his couisn had lived for with cancer which was 22 months.
Initially, we explained that I had cnacer and would need chemo and lose hair but they knew all this from their cousin anyway. I was diagnosed with secondaries in Sept 06 and was told I would only live a few months. For some reason I felt that was n ot true so just told the childrn that my cancer had returned and needed more chemo. It was obvious I was Ill as I was so short of breath and couldn’t walk properly because of an undetected bony met!!! We’ve always been ‘honest’ in that we’ve said my cancer is spreading and that I will have chemo until I die but we got forced into telling them the truth as my son’s friend overheard his mum’s conversation about me dying and came into school the next day and said he was sorry to hear that I was dying. My son was obviously upset we hadn’t told him but seem to understand why we hadn’t told him.
Since Oct 07, we have told them i will die and it will be later this year now. It some ways it has helped a lot being honest as we can talk about the future without me and they ask me some strange questions. My youngest has been most effected and has huge bowel and emotional problems but now he is at junior school, he is seeing the counsellor there which has helped enormously and we are seeing a psychologist re his bowels. My daughter has an emotional literacy support assistant and they get support from the hospice social worker. The hospice social worker has also done some work with hubby and the children which has helped.
In our area we have a local kind of Winston’s Wish and I will involve them soon as my health is worsening and I’m losing so much weight so that will help.
We talk about my funeral and what is going to happen to the disabled space outside the house!!! I’ve tried to make as many memories as possible and used as many charities as I can as money is so tight for us so have been on a sail4cancer holiday and a day out. Used the honeyrose appeal for photos and used grants from macmillan etc for my mobility scooter and other bits and pieces.
I’ve been making scrapbooks for them and will write them letters about what it was like when they were babies etc as they like those tales anyway. In my memory boxes at the moment, I’ve got things like mothers day cards they made and birthday cards I sent and postcards etc I’ve sent. I’ve also got photos of some of my jewellery and ornaments and written why they are so im[portant to me emotionally -def not worth anyhting financially. I’ve done a photobook and box for my hubby with all the card etc in. I’ve also bought cards from Winston’s wish that say 'I’m proud of you when … etc. that has helped me focus. I’m also doing an album of my life so that they know what I did when I was younger. I’m 46 and been with my hubby only 15 years so have a lot of life he doesn’t know about!!!
I’ve also got a box where I’ve put my nursing badges and certifictaes etc.
I’m going to put in some photos in each box and some perfume. I’ve put in some of the bridesmaid material for some reason. The children know about these boxes and tell me what they want in them as well.
The letters are going to be hard and I must do them. the children love their photo albums and have helped make them so some pages do look very odd but hopefully they will remember that we did that together.
We also renewed our wedding vows last oct so that was something we were all involved in as I wanted to see my daughter in a bridesmaid dress and the boys in a suit. it was an emotional day but well worth it.
Sorry - have wandered off the point.
I think you need to be as honest as you can in context with their age. School gossip does go around so in some ways they need to be prepared but as for the under 4s, I haven’t a clue and agree it is soemthing that should be looked into as well as those with disabled children. I have mixed feelings about when you tell them you are incurable as nobody knows how long they have when diagnosed with secondaries.
Unfortunately, I’ve lost several friends here on this site in under 3 months and one case in 4 weeks after secondary diagnosis so feel perhaps it is better for the older ones to know that the cancer has returned or is spreading and that you don’t know the future but won’t be here probably when they are an adult.
The junior school was very helpful in their support but the infant school were useless. the secondary school the twins are going we chose because they have an excellent reputation for supporting children with emotional needs and we got in on my medical grounds.
I was a health visitor but i don’t think my training has helped me deal with this issue at all but you may strike likely and have someone there who has experience. the hospice and their workers definately have been the best for us.
Sorry I missed the chat last night.
Love to you all
kate
Oh Kate
I cant write anthing much as I am at work and I will probably cry now if I do, but your children have been very very lucky to have you as their mother,
XX
cathy
I visited the Foundling Hospital Museum in London today (a place where abandoned children were looked after in the 18th and 19th centuries.)
By one of the exhibits there were these words:
“There are two lasting bequests we can give our children. One is roots. The other is wings.”
And I thought of you Kate, and how much you have done to ensure that your children have those roots and wings to see them through the rest of their lives.
I don’t have children but it seems to me these words are just so right for all of you who have posted here.
And it would be great if BCC could get a project going on this, focusing perhaps on younger children and children with disabilities.
Jane
I went for a mamogram on an ‘innocent’ looking little lump, was admitted on the Tuesday and operated on the next day. It was my intention to pop home for a few things on the Tuesday (after being booked into the ward etc) and tell my daughter that I was being held in for investigations and tell her about the breast cancer and the op when it was all safely over the next day. I got home to find that my father had gone round, in my absence and told my daughter (aged 14) ‘your mother has cancer!’ and then left. There was only my daughter and the cleaner in when I got home. The cleaner was tiptoeing around the house and didn’t know whether to stay and clean or run away!
Instead of trying to get my head around my diagnosis, prepare myself for the coming operation and all the turbulent emotions that you are going through - I had to pacify my poor shell-shocked daughter. I often wonder what affect that must have had on her, poor thing. Whatever you all decide to do it will be better than the way my child was told, but she has survived. It took me a long time to forgive my father though.
Blondie
Hi all
Just been reading these treads again (husband watcthing footy), and have been crying doing so.I really hope BCC can come up with something. Kate you’ve given me lots of things to think about, I’ll be getting some of the " I’m proud " cards.
Sending love to all and Thanks for all the support.
Take Care Liz x
DippyKate.
Hi Kate,
I just wanted to come an & say what a wonderful inspiration you are! I was dx July 07 with Bc then March 08 with liver mets. They have informed me that me cancer is a rapid aggressive cancer and should prepare my family! HOW? This has been hard for me as I am 35yrs old and have been in denial since they told myself & OH. It has sort of really started to sink in the last few days that I may not be here next year! How the hell can I prepare my amazing gorgeuos children 8 & 10 that their mum does not want to leave them but has no real choice, except that I am going to fight all the way! I cant stop crying! I hide and have recently started pushing my close friends away so I dont hurt them! Tell you the truth I’m scared!.. After reading your thread I cried and cried and realised that I to need to do something…
I have avoided up to know talking about it! I have told people on here and friends etc… but not how I feel! I am not sure but how do you cope with your own emotions?
I have this great knack of putting on a bravado that I’m ok when inside I am in bits! I dont even talk to my hubby as he is also struggling and with my added emotions I dont think he could cope.
I am so sorry for rambling on but I feel lost ans sometimes alone, and can only express how I feel when I type it down! Does this sound daft or what…
I better go now and find some tissue…
Hugs
Mel
x
I have just read this thread and am in tears. My girls are aged 4 & 7 and even this morning the little one asked would I be well for the summer holidays - I tried to explain that the string medicine I’m having should help to make be better for a while. But she is too young to really understand.
When I was diagnosed I thought I would be gone very quickly and started wrihting things down - thoughts, feelings etc. I will have a look into the memory boxes - they sound a great idea.
Geraldine