I have read and re-read this thread and it is, to my mind the very worst, aspect of dealing with terminal illness. If there were just me to consider, or other adults, I would be OK and accept it as my c**p lot in life. I think I would be able to come to terms with it and prepare myself. But more than anything in this world, I want to see my children grow and I cannot bear the thought of not seeing them grow up (from a purely selfish perspective). When they were born, I could not believe my good fortune in having not one but two beautiful children when I had all but given up any thoughts of being a mother. I always felt there would be a price to pay… I am not saying this in order to blame myself for anything - just always had this ‘just my luck’ thing in the back of my head, ‘I should have known…’ . I never won a good raffle prize but I picked a winning ticket in the cancer lottery.
Well, I have just sorted out my crafty bits and intend to do a scrapbook of daughters ballet show last weekend, with her, in order to get the ball rolling again. I love doing crafty stuff but the thought that I was having to do it in ‘memory box’ context has stopped me of late. I’ve often thought of doing a diary (not blog) but it is the getting started that is the hard bit - as are letters.
Swissmiss - you are not hijacking at all.
Kate, your posts are insightful, useful and poignant as ever. I will be pinching half your ideas…
Nicky - I think it may be far more difficult to tell teenagers as they are in such an emotional space at that age to begin with. I knew ladies, who are sadly now gone, who had wonderfully supportive teenage children. I think often of them and wonder how they are doing.
Dawn - I may get the Winstons Wishes boxes too. I still have things like Disneyland tickets, loads of school certificates which could go in and I think the ‘I’m proud of you cards’ are a lovely idea. I think I may put in bits of junk (but fave) jewellry, perfume, music we have loved… Just got to get started.
One thing we are often told of, is the resilience of children and that they do cope amazingly well with whatever is thrown at them but this does not make it any easier to bear the thought of not being there for them.
I’ve changed my clinic app until late this afternoon in order to see the children ham their way through a concert first. I will be thinking of you all and hoping we all get to enjoy many more such events.
Love Jenny
x
Hello All,
I too find this the hardest part of this disease…I have a 7 year old daughter who was who was 5 when I was diagnosed and just starting Infant School. We had the added complication of her Dad leaving a couple of months later but I have always been honest with her as I had read in all the leaflets that that was the best thing to do.
I tried to tell her in simple terms that the Doctors were trying to make me better but when the medecin stops working I would ‘go and live with god’. One of the hardest things I ever had to do. After watching the Mummy Diaries I ordered most of what they sold…I have filled the Memory Box with bits and bobs and written the little cards…I have also done a scrap book and tried to show just how much I love her and how much love I felt from her and I have tried to make it so clear that I didn’t want to leave her. A friend of mine also bought me a book Dear Mum…from you to me… which is lovely and is about your life as a child/growing up and what you would wish for your child growing up…she loves reading the bits I have filled in so far. I do think in my case I had a bee in my bonnet about writing everything down as I was the only one who was really around through the age of 1-5 and knew so many things about those years that no one else knew (partner and I had split once before !!). Think that made it easier for me to do as no way did I want to die without her knowing little bits and pieces about her childhood so far. With everything I have done/written I just want her to have no doubt in her mind of the huge love I have for her how important she is my life.
Recently I was trying to find some support for her and found it so difficult. Winstons Wish only deal with people from that area and there didn’t seem to be anyone around Surrey. Most things are geared to older children. I made contact with our local Hospice and they have been so good to me but don’t offer any support to my daughter until I run out of treatment options and are passed from the hospital to the hospice. A think its to do with a time thing and not knowing how long we have she should be focusing on the well time not the future unwell time if that makes sense…When my sister in law spoke to the Macmillan they said that my situation was unusual ie. having secondary BC with a young child which we both thought to be a bit strange as there seem to be so many mums with young children…but they could offer us very little as well apart from leaflets which I already have. I was completely lost and found it difficult to believe that there was nothing around but don’t know if I am missing something !!
Sorry for the long post but I worry so much about her future…while pretending to her we have nothing to worry about at the mo…
Jetty x
Jetty
You have really summed up my quandry here.I really understand what you are saying, It sounds like your sister in law has been some help to you which is something…
I went to my GP and asked for some additional support through mcmaillan and nerved myself to ask about a hospice and they basically pushed me back. I have tried some counselling, but there is nothing for my son there. There is a local cancer support centre - but cant see him getting much out reflexology etc. I really feel completely lost here on this subject and my husband simply shrugs his shoulders. He is terribly upset by my distress at this - but simply doesnt know what to do.
One of the things that made me cry is how thourough Kate has been and how she has put so much time and love and thought into it. I am not sure I could do this - but I can’t really figure out a way to do this for my son. I really have to think about what to do here and how to do it
Jenny - its funny how we think and how everyones different…I know people who take it as their due to have all the good things in life and are totally amazed, shocked if they stub their toe or have a headache…we have certainly won the crap prize here.
love to all
cathy
Hi all
I have been reading this thread with great interest and sympathy, although I don’t have any children – such a challenge to inform, support, involve, reassure and prepare children, especially younger ones, for our futures – my heart goes out to everyone facing this challenge.
I wondered if the Lavender Trust might have anything to help, and found they’ve done a book called “Mummy’s Lump”, available from the BCC publications department. No content available on this site, but it looks to be focused on primary BC. Also found a book called “Why Mum?: A Small Child Dealing with a Big Problem” by Catherine Thornton, who wrote the book when she found there was nothing for her to use to talk to her 7-year-old when she was dx with BC – a few second-hand copies available on Amazon.
Marilyn x
Thank you for all your suggestions and thoughts. Thinking of leaving my son is the hardest thing about this horrible situation, and as he is only 3, I ahve not told him too much yet, although he has been to the hospital with me and met my onclogist ( I couldn’t get a baby sitter). I was expecting him to have loads of questions, but seems to accept that I go to the hospital for special medicine to keep me well, but sometimes, because it is very strong, can also sometimes make me very tired and grumpy! I haven’t started a memory box yet, but have written a sort of dairy about my life, meeting his Dad, his birth, and important days like his first birthday, holidays etc.
I am upset that some of the women who have posted have not been able to get any support- locally to me there is a Marie-Curie hospice with a child worker who I know I can talk to even though I am still having active treatment.She has also said that she can support teachers etc if needed. There are obviusly a lot of people without this support, andI think BCC need to look at what they can do to help- the new book being advertised by them doesn’t match my situation at all, as I was daignosed with secondaries at the same time as my primary, so haven’t had a mastectomy.
India
Hi Ladies,
It is really good to be able to share some of your wonderful ideas, but heart-wrenching at the same time.
I have finally bought some boxes (TKMaxx) and started putting a few things in (I had kept their first doll/cuddly toy and a favourite book each from when they were little) and I’ve put in a notebook each. I found I kept putting off writing ‘the letter’ because in my mind it had to be so perfect. Instead I’ve decided to start the notebook and just write in little thoughts as they arise. I started by writing down funny things they’d said which I had kept on scraps of paper. On another page their favourite toys or games they played, and friends they had at nursery etc. Now I’ll add other thoughts such as my daughter just had her school prom, so I’ll write about how we chose the dress and how she looked and how proud I was. I think I might be able to keep adding little bits without the pressure. I got some of those cards from Winstons Wish too, so I’ll add some of those. I really like Kate’s idea of taking photos of jewellery and other favourite things and saying why they’re important to you. Maybe when I get told I’m nearing the end I’ll be able to write those letters…
I was surprised when my husband asked me to do something for him too. It hadn’t crossed my mind, but that will be a lovely thing to do for him if I can bring myself to.
Cathy - I wonder if there’s some way you can introduce your son to the idea of death generally, as a start? Using books or stories (which i guess he may not relate to) or talking about any animals or people who have died or ‘gone away forever’? It is shocking that there is no help available. Have you tried the relevant national society for his condition? (being cagey - not sure if you have shared it on here) they may have some ideas or resources perhaps. Your experience of not being bad enough to get the help yet, and the help that is available not being very relevant sounds like just the same old story for us secondaries ladies.
Swissmiss - I think you are right and you had better tell your son something before he starts school. The playground has no boundaries. Perhaps if you just told him that it is cancer, but cancer doesn’t always kill people even though that is what many (ignorant) people think. Then if other kids come out with the C word at least he has an understanding that there are shades or severity and lots of treatment options. Later on you can be more specific about your situation when you have specific info to give him. As someone said, time passes slowly in children’s lives and none of us know how long we will go on being reasonably well, which as far as my children are concerned is how I want them to view it at the moment. What I mean is I have no qualms about focusing on my wellness while I am well, and not jumping the gun and telling them about the later eventualities until we are facing them.
I’m off to look for that ‘dear Mum’ book. I’ve got lots of books on my wish list at amazon, ready. I looked for the ones Winston’s wish recommended, and then Amazon came up with loads more suggestions. Now I need to find one for teens.
Wish i could give you all a hug
love Jacquie
A friend of mine who died of cancer left several letters for her daughters to be given to them on important birthdays in the future. I also saw a film (My Life without me I think) where a woman left tapes to be listened to each birthday or Xmas.
Jane
Jacquie
Have just sent off a detailed query as you suggested-
thanks for the idea
Cathy
Hi All
Marilyn and Jetty thank you both so much for the info on the Dear Mum from me to you and the Why Mum?: A Small Child Dealing with a Big Problem" by Catherine Thornton. I have been on and found them and have ordered them too. Hopefully will help me start my boxes and get me moving with it all, although i am hoping and intending to be here for some time yet.
This is a very moving thread and think it helps each and everyone of us to talk about it and get ideas from others in the same boat. Kates post is amazing and I am speechless really, as she has covered every aspect and sounds like her children will have so much to keep them in touch with kate it is unbelieveable if that makes sense.
I hope that BCC can come up with more help though with the secondary diagnosis aspect, as the Mummy’s Lump book which arrived today is primarily about primary bc, and does not cover secondaries.
Lots of love
Dawn
xx
PS. Good luck Cathy and hope you get some good info xx
Thanks all, I have ordered ‘Dear Mum’ and also the Grandparent version for my mum (Amazon will wonder what hit them…) Time to take bull by the horns and start preparations (though I did say to onc today ‘I won’t be going anywhere for the next few years?’, and he agreed - yippee). I feel strengthened by the wonderful suggestions from everyone and want to put together a legacy of me for my children.
Also discussed the nature of this thread with onc, and support for secondary breast cancer (or lack of) in general, and he has given me names of people to talk to about being involved in supporting women in our area. Don’t know where this will lead but he was quite keen and I am quite excited. I never wanted to be a crusader for BC but having listened to very right-on bunch of mummies near me going on about the Moonwalk for months now (and always changing subject as I approach) I was becoming quite angry and thought they don’t know what support is - so maybe I should put money where mouth is and try and do something really supportive. Anyway, I need to sleep on that one and put it into some reasonable perspective. Onc also said there are some new groups being set up in our area which I take to include secondary groups - so watch this space, Cambridge Ladies.
Jennyx
My friends friend who is dying of Cancer of the small intestine has made up the boxes already with photos, cards and things from there childhoods, but also she has written and I am not sure about this one, as I think for the child it could be upsetting, but I guess its a personal choice, but she had gone out and bought special cards for there 18th, 21st birthdays and I think also special gifts.
Jules. xx
When i come onto this website and the forum i usually just click on the ‘have i got breast cancer?’ section.I found a lump last week and go for my scan next Thursday.Anyway i saw this thread before i went in and clicked on it through curiousity.I can’t believe what i have just read.It’s very hard to say without sounding patronising but i have never been so…i don’t know what the word is…amazed,inspired,humbled,encouraged…i really don’t know.You are all just the most incredible women.I really think that Kate’s post should be published in some way.I can’t begin to imagine what you are going through with your dilemmas but there is one thing i would perhaps suggest.I would go to every post you’ve ever written in here and print it out.If you were to put them in a box,maybe for when your children are older,they could read them and realise how you were feeling about your illness,your situation and them.Reading all your posts showed your overwhelming love for your children and the posts are beautiful.Again,desperately not wanting to be patronising,you should be so proud of yourselves as women and mothers.I send you all and your families so much love X
I have 2 young girls, I was dx with secondary bc in my lungs and liver in February this year - as well as in my chest wall and lymph node on under collar bone.
I didn’t string a sentence together for about the first week after dx and all i could think about was not being around for my children aged 9 and 6. However I have developed this inner strength, which I’m sure a lot of you have too, and am absolutely determined to be here for as long as possible because I cannot bare the thought of my kids growing up without a Mum.
I have told them that the cancer has returned and that I need more medicine to keep me better and to keep the cancer from growing. I have triple negative so chemo is my only option - although this type of bc responds very well to chemo and there are a lot of options available.
I am fortunate to have a Maggies Centre close by and always come out of there with a sense of hope - we just all have to hope that the research is one step of us needing it. My advice is if you can’t get something in this country go somewhere where you can, I have started fundraising just in case this situation arises with me and within the last month have raised over £5000. If I don’t need it then the money will all go the places such as MacMillian Nurses, Maggies, Cancer Research and of course Breast Cancer so it can only be a good thing.
Germany anf America seem to license drugs a lot quicker than in this country - I live in Scotland and was astonished to find out that if you live in England and your onc believes that a drug could help you that is licensed in the UK then he can go to the Trust and fight your corner even although it has not been officially rubber stamped by NICE. In Scotland my onc cannot under any circumstances do this if it is not rubber stamped by the Scottish Medical Consortium then there is nothing the Onc can do. I have taken this up with my MSP and am currently awaiting on a reply from the Scottish Health Minister regarding this.
Sorry I have kind of went off on a rant about issues not concerning kids. I too write little diaries that have happened throughout the day and the type of nature they both have, what funny things they ask and say etc Sometimes I find writing these extremely difficult other days I find it okay. I have shoe boxes at the moment that I put little things they have made me in etc.
However - I hope to be around to see piles of diaries and boxes!!
Diane
Hi all
I’ve been reading this thread since it started but haven’t posted because my children are older (26, 23, 21) and fully (or as fully as most people) understand what is going on and what the outcome will be. That has its own problems and it has been agonising recently at times having to tell them things have progressed and I am back on the chemo as they know all the implications of that. My youngest in particular has so much to cope with without all this - uni finals in a week, job interviews, finding flats to share next year etc.
Did decide to post though because of what Jules said about her friend getting birthday cards etc for the future. Mine are all past those important birthdays but I have bought a few wedding and baby cards (they have all expressed a desire at some stage to get married and have a family!). Am still not absolutely sure about it - when I had counselling last year, I did talk about it and whether I would spoil these special days by doing this. The counsellor was quite clear though that in her opinion it would be at these special events that thoughts would inevitably turn to me and having a “message” of some sort would help. My husband has also said he dreads the thought that I won’t be alongside him at these key family events. My children seem to like the idea of the memory boxes - though they don’t like me setting them up right now but would prefer me to leave it (bit of denial?).
My husband (like someone else’s - can’t now see which post) has also asked me to make him a memory box. I’ve put in all of them just bits and bobs that will bring back happy memories (tissue paper that came floating down in the theatre when we went to see Lord of the Rings; programmes from events; photos etc) plus some poetry that has special meaning. I’ve started writing some of the cards from Winston’s Wish and I also want to write letters but don’t feel able to do that at the moment. My mother also knitted a christening shawl for my eldest child when she was born and I would like to do that for each of them as well. Not sure though how it would be taken if they can’t have their own children for some reason.
Really feel for you ladies with younger children and all the difficulties of knowing how much to tell them when. Thinking of you all.
Kay xx
Hi all , this is great subject to in time …
i have 2 children 12 and 16 ,i was dignosed in 2002 with breast cancer , 2004 bone caner spine i have just found out i have brain tumour 2008 , imy son gets really angry and my daughter goes quite , i f
ind this is the hardest thing to do to tell my children … i am on my own so their concerned are more that most i supposed , i dont think their is enough to help are children is if any of you have advise i would to read it …
thanks sophie
Sophie - I don’t know what area of the country you live in. I think there are different systems in different areas.
That must be so hard on your own with your children. How do you cope?
My immediate thoughts are -
Do your schools have a school counsellor? Although mine are younger, they have seen a school counsellor - properly trained children’s counsellor not just a learning assistant and that has helped a lot. I would talk to the school or school nurse and see what help is available in your area.
I used to work in a Young Person’s clinic where we had a counsellor as well and Connexions might have counsellors who could help. Connexions seem to work with different sectors of young people in different areas so may not be any help in this area.
Do you have access to the hospice or MacMillan nurse? They have social workers who can work with children as well. Mine have found ours very helpful and have access to good books etc as well as being able to do specific work.
I was told of a website/forum that is for teenagers whose parents have a life threatening/serious which is supposed to be helpful but can’t remember what it is called but the MacMillan Centre told me about it so it must be well monitored or they wouldn’t recommend it.
I’ve been seeing the hospice now for 20 months now and they have been such a huge support to us. I would ask to be referred to one - it doesn’t mean that you are about to die - they have access to all sorts of help and you sound as if you need some help. It is wrong that you are not getting help with your children. Anger is such a common reaction to bad news and illness - my hubby doesn’t seem able to move on from that stage at all so it must be really hard with a 12 yr old with all those hormones flying about.
Your school should be able to access some help for your son and daughter as if they are suffering emotionally then their academic work suffers so they are often good at supporting children if they know what is happening - shame it is half term.
Thinking of you and hope someone else has ideas for you.
Kate
Hi kate,
yes i do find it hard but i have to think of how my children feel they must find it hard as they are still children this horrible disease has made them grow up because i need help ! i have wonderful friends and great mum and dad, thoe my son says if anything happens he feels he cant live with his gran and grandad as it would constantly upset him thinking of me…he says he is not ready to be without me i can understand all this…
i am with hospice and yes they are great support for all…i do support from both schools they have what they call learning mentours they are a great suppose and allow my children to talk to them about anything whn ever they need as i feel they talk to the mentours more openly as they are scared of upsetting me.
My son mentioned respone do have families who take children in who have termial illness, to help them have a break probably to give them a break from me as well as me getting a break to but i would be really hurt if this happens as this is my job i love being a mum and there is no book to tell us are we on the right course we ave to just hope…
my daughter has just took in then said nothing she seems to need time to think and we probably come back with some questions … i hope she does will give her time then approach her carefully … but son is just angry and upset he has a lot one at moment with gcse my consultant offered to send a letter to schools for chuldren to give a little help at this difficult time so i think i will take them up on it… sorry for going on cant stop the tears just thinking of how they must be feeling…
sophiexxxxxxxx
Hi everyone, I was just googling on this subject a bit and I found these two links through Cancerbackup. I don’t know if they may be useful for some of the older children? There is not so much for younger children but then they are not so computer literate anyway.
For children aged 12-16
riprap.org.uk/
Are you aged 13-25?
Are you a sibling or child of a person with cancer?
Do you think you’re alone?
siblinks.org/
Jenny
x
P.S. There is also a link on Cancerbackup for a site for younger children but it is American. I’ll have a look at it later and see what it looks like.
Jx
Hi Jenny thanks will have a good look thanks again xx still no question from daughter really worried bt son seems to talking about it more xx