I note that on Channel 4 this coming Thursday 8th there is the 1st of a 3 part series called The Mummy Diaries. It’s about Mothers who know they are facing their final 12 months.
I am not a Mother and lost mine to BC when I was 8 so I speak with emotion and a huge respect for all Mothers. I dearly wish that there had been effective treatment and support for my Mother and someone with the foresight to tell her to keep a diary, a Mummy Manual, a memory box, photographs and so on - we had nothing but a handful of personal effects and some dated photographs.
One of the ladies who drowned in Portugal 2 weeks ago used to live down the road from me so it has made me think even more about the brevity of life. I would like all Mothers to contemplate that they could be taken at any time and for them to always keep a Mummy Diary (in whatever form), hopefully for very many years of course, for their children, however young or old, to cherish at the time when the inevitable comes to us all, ideally when we are 99 and struggling with our new lacy suspenders having had one too many!
I hope no one thinks this is morbid, it’s just a well intentioned plea.
Dahlia
This is a very good idea -but for me it is fraught with problems. In common with many on here I mentally did just this thing after diagnosis.I (in my mind) ‘wrote’ letters and notes for my children and grandchild. In these I passed on all my feelings and good advice for life. And then …I did precisely nothing.
I know I should do something to ensure that whatever I want to be passed on IS passed on -but still I do nothing about it. Maybe I’m a lost cause.
Possibly deep down I am still refusing to believe -in the face of all other evidence - that I too will be struggling to get my lacy suspenders on when I’m 99years old. Well maybe -but thats a mental image I may keep with me for some time.
I would like to know what others will do /are doing though.
The write up advertising the programme in the daily mail TV guide was good but i cried reading it so goodness knows what i will be like watching the programme.
My daughter said ‘forgoodness sake mum dont be watching that, you have to believe your fine now’
I think the only people who know how we feel are ourselves and other BC sufferers.
Love the idea of leaving a box for each of them, mine are older but i know they would appreciate it.
I started doing a story of my life last year and in it I’ve covered my grandparents and parents and the kind of life I had as a child, work, getting married, having my son (what his weight was, what time he was born etc) and then about my diagnosis 12 years ago and re-diagnosis 3 years ago.
I lost my mum to b.c. when I was in my 20’s and I can’t ask her things like ‘what time was I born?’ so I thought that if I leave a history of my life (not just about b.c.) our son can look at that when and if he wants to when he’s older.
I think it’s important to leave something and it doesn’t need to be morbid.
Belinda - Just read the Observer/Guardian Link, crying my eyes out trying to not show that to my 3 yr old boy. Don’t know if I will be able to watch it but may record it to be able to watch it in my own time/on my own as like so many of us on this site I am very positive but do hide a lot of emotions from family/friends.
All the families must have been so brave, just like so many on this site.
Going to go and give my nose a good blow and play with my boy for a while before he goes to Nursery.
Thanks for the link to the Observer article Belinda. I thought it was really good. One thing which has really stuck in my head is something the psychologist said…about all the women she interviewed travelling on parallel roads…one road where there is still hope for a cure and another road where they know that probably won’t happen and so they need to prepare for their deaths. I like that metaphor and it rings true for how I experience breast cancer. And it sounds Dahlia as though it may make sense to you.
I don’t have children but I can just about imagine how painful preparing children for your probable death must be…and how painful watching this programme will probably be. But this approach to dealing with death seems so much healthier than that which occurred in the 1950s when I was growing up. (Children never told anything; often excluded from funerals etc.)
I’ve told my children that I will not live for long after trying to avoid for the last 14 months when I was first told it was a case of chemo helping my symptoms rather than any cure. They did tell me in sept 06 I might only live for a few months so have done well.
I’m in the middle of doing memory scrapbooks for them and will do memory boxes as well. I’ve done a separate box of things I can not split up ie certificates and my nursing school badge but don’t know what to do abut my wedding, eternity and engagement ring. I’ve found this difficult to get done over the summer when I was high on steroids but now I know my cancer is regrowing, it has given me the spur to get back to doing this.It is emotionally painful though.
My children are 10 and 7 and have lots of emotional support/counselling at school which has made a huge difference to how they cope and this is especially true of my youngest son who has just moved to junior school as he got no support from the infants at all. They do get sad and clingy at times but the majority of the time, they just play happily and the whole atmosphere of our life has improved since they knew the truth and we’ve been open about it. They had already guessed and it is destructive to family life ot hide such a big secret. My inlaws feel they should not have been told but my mum and sister is supportive of our decision and it has helped us cope better as a family. We do get support from a hospice social worker or else I’m not sure we could have done this on our own.
I think it is important to get personal info/memory books/ photos done as there have been so many women here on site who were well one month but dead the next. Sorry to put that so bluntly but it does happen and I think we should all be aware that this disease is so unpredictable, we need to be prepared for all eventualities.
I found out recently that my hubby’s ex landlady who is 76 mother died when she was 7. She did not know what was happening and all she knew was her mum would disappear into hospital, come home for a while and then go back in. One day, she was told she was dead and didn’t go tot he funeral or anything. She feels it is important that children know the truth from her own experience.
I will watch the programmes but know I will cry especially as I know one of the women involved.
Kate
Hi All
Dont know if I will watch the program, my OH gets very alarmed when I go down this road. My BC isnt terminal so he doesnt see the point. But for a while we didnt know it hadnt spread and like us all its often there with every ache and pain. I decided to do some kind of letter/diary for my boy (3.5) and baby girl (9 month) but along the lines that we will all look at it when they are 18, or getting married or seomthing and laugh. Havent made a will yet but have told OH what I want him to do. The baby books I did reluctantly as someone bought them for us have now become sacred. I havent linked any of the family diary to the BC, just events that happen to us all. I think I will do a seperate medical list of events in case they ever need it for their own histories etc. My grandmother died of BC at 50 and it was very painful for my mum (24 at the time) to remember the details so I could fill in the genetics form. I`d hate for her to have to tell my daughter about my BC.
Dont know if its me but with BC month and the C4 programs there are reminders all over - this aft I am heading to the dentist, hope to be safe there from any reminders and am looking forward to the normality of that !
I totally agree with you and have done the same. I was at the BCC Secondary Taskforce campaign (spoke about the stats and the letter I’d had from Alan Johnson’s office) and remember you talking.
I was told exactly the same as you - last September I was told I had about 3 months to live but am still here like you and we don’t know what’s round the corner - none of us do.
We’ve always been honest with our son right from when he first knew I had primary b.c. (6 years old) because they do pick things up and seem to be able to sense that something’s not right at home so I agree totally with you that I feel the best way is for them to know the truth.
I’ve kept all my son’s stuff from when he was first born and will have all of this plus the ‘book’ I’ve done for him so he can look at it when he’s ready.
I’m one of the 5 mum’s taking part in the documentary the “Mummy Diaries” and I just wanted to add a comment.
Whilst it might appear that the documentary is sad, I have watched 2 out of the 3 episodes and there has been some joy as well as sadness. Having met all the families, I think I speak for everyone when I say that we have thoroughly enjoyed making the series even though the subject matter deals with life and death. The children have also enjoyed taking part and I think they have received a lot of support from Julie Stokes and all those involved in making the programme. Julie Stokes is the founder of Winston’s Wish which is a wonderful charity that offers support to children and families going through a bereavement.
I do hope that a lot of women going through a similar experience can watch the documentary because it is about how families cope under immense stress when a family member has a terminal illness. I feel that the aim of the programme is to show how different people cope in this situation especially using some of the techniques that Julie Stokes has introduced such as the memory boxes and the mummy manual. In fact Julie suggests that all families create memory boxes even if they are not going through a similar situation. They can be great fun and the children love to go through the photos and cards.
We have tried to be as open with our children as possible but this does not suit everyone.
As dippykate mentioned, she knew a lady who’s mother died when she was 7 and was basically kept in the dark. She wished she’d known more. There was also an article in the Sunday Times (4 November) where Roland White wrote a piece about when his mother died. He said “I can still remember the heavy silence that fell in the car when I asked the question, How’s Mummy?”. He didn’t go to his mother’s funeral either and was showered with gifts instead. To see the full article, follow this link:
I hope the documentary gives an insight into how other women are coping in this situation and that it helps fellow cancer sufferers know that they are not alone. I have been keeping a blog of my cancer experience, (the web address can be found in the Observer article) in the hope that it will help other people. I have had emails from people giving me words of encouragement and today I received an email from a chap who had seen the article in the Observer and then went to my blog. He said that what I have been going through mirrors closely to his mother’s experience and he was going to show her the blog because he didn’t want her to feel alone which she sometimes seems to.
I think its brilliant that you’re involved in this project…the philosophy behind it is I think spot on…Winstons Wish sounds like a much needed charity.
Have read your blog too…its appalling that you’re having to get treatment in Germany.
I saw this today too - I don’t think I’ll be able to watch it. I need some advice though. My partner’s first wife passed away from secondary breast cancer a few years ago when their three children were young - his youngest was seven. They’re all older now, but only in their early teens and it has been hard for them to see me being diagnosed as well. I really don’t want them to watch it as I think it will really upset them - his middle child seems to be the worst affected by her mother’s death but won’t speak about it. She has had counselling at the school, but I think that’s now stopped as she wouldn’t say anything. She spends quite a lot of time in her room from about 8.00 pm watching tv and I don’t think this will be good for her. Or maybe it will? I just don’t know and really need some help and advice. We all get on really well and all live together with my three boys (younger) - so eight of us. Also, my OH was so brilliant to me when I was diagnosed, but it was SO hard for him - I don’t want him to watch it either as I can’t bear seeing him upset. Alison (his wife) did leave letters for all of them BTW. I just want everyone to be as happy as they can be.
Maybe I should just suggest a family meal out that evening to celebrate Thursday?
After much deliberating I plucked up the courage and watched it. Yes I cried and Yes it brought back memories of that awful night when I told my 8 year old daugthter and 6 year old son mummy has breast cancer, but I thought the programme was shot and edited just right. I was so pleased they didn’t intrude on Pam’s last days or death and the filming of her children going through their boxes was very moving and those little treasures meant so much to them.
I watched the programme and am so glad that i did,I was deeply moved and felt I had to watch it,if just to glimpse some sort of understanding and insight into the dreadful realities of this disease…L… x
I think it put across very convincingly that you shouldn’t lie to your children. They will often have worked it out for themselves and not talking about it doesn’t help them.
The bit I disagreed with, was explicit instructions about the dentist, bedtimes etc. For goodness sake, you have to trust their father to manage these things in the future. If you treat him like a total idiot, the children will pick up on it and give him no respect.
Apart from ensuring I leave some recent photos, I won’t be doing anything similar myself. My teenage daughter is quite capable of collecting up anything of mine that she wishes to keep. For younger children, there are some useful suggestions.
Yes I watched the programme and thought it was really sensitively and powerfully produced. Yes I cried but it was uplifting too…I agree with Holey that truth telling is so important.
I also think the whole thing about memory boxes and diaries etc is really imporatnt…not only for young children but also maybe for older ones and for adults too! I have no children, no close biological family and a partner I have been with for just 11 of my 58 years. My life has been fragmented in many ways and hasn’t followed a conventional family path. I’m intending to leave scrapbooks and photos about my life for my partner…and bits of the mundane too…perhaps not everyone’s approach to a premature end but it kind of gives meaning to me and may help her afterwards.
I thought Julia Stokes from Winston’s Wish was brilliant.
I watched the programme on channel 4 +1, as I didn’t want to watch whilst my son was still up. My husband and I both cried. It is a beautifully produced programme and I greatly admire the families who are involved.