Children and death

Public Archive
21

Hi

i would like to add a comment to this thread if thats okay.

I have 3 children aged 8,5 and 2. i too hope i never have to tell them and pray i live to 100 - i’m 35 at the moment.

anyhow i find this quite difficult to hide as there is constant adverts on TV with young children involved and my kids have recently seen them. I try and change channels but sometimes it too late. It really pisses me off because kids just want to be kids and should be allowed to be kids and not have the fear of death put into them at such a young age.

EG Advert 1. Recently on about kids eating the right portion sizes or if not they might be at risk of getting cancer - well i dont eat loads and am 8st 4 and was 7st 12 at dx. I look at my daughters facial expressions and the oldests face speaks for itself!

EG Advert 2. Mom feeding baby and looks at clock and see’s cancer on the numbers - My kids can read and again eyebrows are raised!

Eg Advert 3. Dad is too ill to take kid for a bike ride as he has cancer - my kids have missed out on a whole year of physical activities with me because of this damn disease and i really don’t think they need reminding.

I’m sorry but i think i’m going off the subject a bit but however much we try to protect them there is always something, someone, somewhere who will picture cancer = death

Love to you all.
Sukes

22

Hi Sukes,

Your comments really got to me. We have just started the summer holidays. Previous years we would have planned out activities, days out, play dates, sleepovers. This year during chemo its all so very different. The children know that I have secondary breast cancer. They are 6 and 10. Their grandmother died of cancer a couple of years ago. We have been as honest and open with them as we can for their ages. Their school has been totally fantastic, sensitively covering cancer as part of their illnesses section of PSHE education for my 10 year olds class. My eldest’s classmates are aware I have cancer although they do not know the details. My eldest is more relieved that they know and feels more supported by them. My children are free to ask us or their teachers or school counsellor any questions they have. I do not believe it is a case of putting the fear of death into them. I could not keep this disease from them, given the side effects I have from chemo I believe their imaginations would have been much worse than the reality. I could never lie to my children about my situation because I know that they would never trust me or my husband again if we lied about something this significant. We try to encourage them to talk about their feelings. Obviously they are reacting to the whole situation in their own ways, but I feel at least I am here now to help guide them through and that the strength of their relationship with their father will help all three of them in the future.

Just my perspective.

Snoogle
x

23

Hi snoogle…my daughter is now an adult but in your shoes I hope I would follow your, I think, shining example. Apart from the usual pet’s deaths my daughter’s friend died of a brain tumour when she was in first school and the children accepted and mourned their friend in an open way. More so than some of the adults. The little girl’s Mum told me years later that some fellow parents had crossed the street to avoid contact at the time. I only see this lady occasionally but she has told me it’s good to feel free to be able to talk to me about her daughter. Some who knew her daughter still won’t mention her, for fear of upsetting. The daughter would have been a young woman in her late 20’s now and there’s a tree in the school playground in her memory which has grown over the years.
Having lived with mets for several years now I have made and lost friends with cancer along the way, many with young children. A very close friend was very honest with her children and the last I heard they are coping well with their loss.
The friend’s daughter visited her Mum after her death with some drawings and wanted an active part in her Mum’s funeral. I have 2 very young grandchildren (babies) and whilst they are much too young to understand at the moment my illness is not hidden or never discussed so in the future they will be able to understand, ask questions.
I hope your chemo is working well…and we get some decent weather for the rest of the summer holidays! Belinda…x PS sorry snoogle reading back through this thread I realise I’ve posted some parts of this message before. I blame my chemo brain…x

24

Hi all

This is such an important issue. I missed this thread first time around, being on holiday, so I’m glad it’s come back. And sorry if I’m going back to the beginning a bit.

(PS. Thanks too, Debsincornwall, for bringing this thread to my attention a week or two ago, and I did write a reply to you, but like several postings at the time it got lost and I hadn’t cottoned on to composing in Word first and then pasting in, and I really couldn’t face composing it all again - sorry. I found your post really moving and, in such awful circumstances, how was it for you and your daughters that your husband died upstairs at home? Were you glad that he was at home? Had you planned for him to be at home? You know why I’m asking this, don’t you, because of Jane’s thread about Horrid Hospice!)

I agree with what Jennywren says about not telling children too much when you are well. What’s the point? After all, we are all going to die sometime, the only difference between us and people without a secondary diagnosis is that we know our lives have been foreshortened, but we don’t know by how much, especially when we’re still relatively well, and there is always that proverbial bus that could knock anyone down at any time, fit or ill.

Kay – think your post is really sensible, and I think I’ll try to talk to my two year old like that.

I go into hospital every 3 weeks for treatment, but as my daughter is still going to nursery full time, she has no knowledge of this.

But I had to stay in hospital recently for a week for a hip op, and she was clearly upset by that, although we chose not to have her visit me (which was hard for me!). When I came home she was very clingy, and in fact has been sleeping in bed with me ever since and refuses to sleep in her own bed. And every now and again she has a ‘sore leg’ like mine, and quite frequently wants to see my scar.

Dawn, oh how I share your sentiments. How I hate the thought of losing them, so to speak. Sometimes I really worry about how they will manage without me, and I find that really upsetting. Of course, I know that they will manage and I’m not indispensable, but sometimes I feel hubby can be a bit too controlling and impatient, and I fear he doesn’t remember (!) what it is to be a small child. His mother has told me he was born an old man! Sometimes he has no sense of humour!

Something I think hubby and I will disagree on is faith. I am atheist/humanist. He is by default Catholic although I doubt it really has any significance for him day to day. But what do we tell our daughter? That mummy will go to heaven, be an angel, or a star??? Or that mummy has gone and that’s it. It sounds like a no-brainer really, that we should tell her mummy is in heaven, watching over her, always with her.

The other thing, and I don’t know how I feel about this, is that we are seriously looking at trying to get her into a Catholic school (for better schooling), and she will therefore absorb a Catholic religious outlook. Of course, whether or not she chooses to believe will be up to her. And I guess that’s ok. I certainly don’t want to impose my lack of belief onto her, especially if faith will give her some comfort. Sometimes I wish I did believe, as I know it comforts others. Sorry, rambling off track a bit.

Thanks for bearing with me.

Alison x

25

Thanks Belinda.

Reading your post actually made me think about the ‘friends’ who haven’t spoken to me more than once since learning of my diagnosis. Of old friends who are true and solid and supportive and who have shown actions beyond mere suggestions of helping. And there are those who I didn’t realise were friends who have been there for us as a family since diagnosis. Sometimes people just can’t cope or just don’t know what to say. From my own experiences of losing loved ones for a variety of reasons it is always better to hear someone say that they don’t know what to say but acknowledge the loss rather than to be avoided by someone completely. I guess I now know who will be there for my husband and children and who won’t, so in a strange way that is a comfort.

Snoogle
x

26

I too am thinking about friends/colleagues who have not been in contact (other than the obligatory Christmas Card) since my secondary dx. As you say though, Snoogle, there are also those people whom I considered really only acquaitances who have come up trumps over the last two years, and offered so much support to me and to my family. I too have some people who really don’t know what to say but are there all the same - it is actually why I try not to take offence if they do say something which isn’t quite right as I’d rather that they did that than ignore me.

SOunds difficult, Alison, with your daughter at the moment and must be upsetting knowing she’s so clingy when you think about what the future might bring. My experience with preschool children is that they tend to be much more accepting of difficult things than we might expect provided they understand the facts. My guess is that she doesn’t really understand why you “disappeared” and that means she’s worrying that it will happen again. If you feel I can help at all (using my professional knowledge for what it’s worth!) then pm me.
Do you know the story “No Matter What” by Debi Gliori? It’s a particular favourite of mine - have mentioned it on other threads! - and deals with how a mother’s love for her children continues “no matter what” including when she dies. That compares a mum’s love to starlight. Think it is a very good way of introducing the idea of death without the ideas of “going to heaven” if you don’t want that.

As I said, much less difficult with “children” in their 20s, though if anyone has any idea of how to get my 24 year old son to open up a bit, then let me know! He won’t talk about my illness at all.

Kay xx

27

@ snoogle

Thank you so much for your posts. We’ve got a four year old daughter who has already noticed the change since my wife’s diagnosis in early October. She said she wanted the “normal, special days” back; when we went to the park as a family or just shopping together. Before Mummy had to go to the hospital regularly, didn’t have to wear maks to prevent infections and picked her up from nursery.

We’ve also noticed the same with other people. Some people have been wonderful but others have been really terrible in their lack of any sort of sympathy or acknowledgement. I shoudln’t be judegemental though, because before cancer touched my family I would probably have been like that myself…Not something I’m proud to admit, I can tell you all…

28

thanks charlieray,

For us it has been about finding a ‘new normal’. It has taken time and we are probably not there completely yet, probably never will be. I am fortunate that, so far, my treatment has worked as well as we could have hoped and we are now facing decisions about treatments that were not considered appropriate at diagnosis. So possibly more to explain to our children.

It is still possible to have special days. Has your wife applied for disablility living allowance? She should automatically get the care element if she has secondary breast cancer, just needs to obtain form DS1500 from gp or oncologist (don’t be scared off that the form states less than 6 months - I got mine 9 months ago!). She may be able to apply for the mobility aspect, I do not know your personal details. If she gets mobility at higher rate she can apply for an disabled badge (helps with parkign close to places and obtaining some free parking). I also got a letter from my gp which we use at theme parks and the like for exit passes. There are always ways round to trying to do fun things with your kids, its just more of an effort and doesn’t get done as often.

I have one thought about your situation and hope you don’t mind me making a suggestion. You say that your daughter is four and refer to nursery, does this mean that your daughter has not started primary education yet. I appreciate that if this is the case that you might already have put in your preference forms, some counties vary, our forms had to be in before October half-term for both secondary and primary schools (we have applied for a place for our eldest at secondary school). The reason I mention this is that my oncologist supported our application under exceptional arrangements for the school at which we believe she will receive the optimum social, emotional and practical support in light of my illness. This will put her higher up the priority list. Even if your application has already gone in you may be able to contact your education department and explain your situation. Apologies if this is irrelevant for you. It’s just we don’t always get a good steer from normal sources when it comes to things like this.

I hope that your wife is responding well to treatment, chemo and other treatments are tough and they take their toll. I finished chemo a few months ago and am still recovering from the chemo, let alone dealing with the cancer itself and the treatments i am still on.

I don’t think enough people realise how tough this disease is on partners.

I wish you all well.

Snoogle x

29

hope you don’t mind my adding my bit to this thread…it resonates a bit with me right now.
I am fine -post rads and on tamoxifen and all well at latest check up (WLE and SNB in May). When I was 13 my younger brother died of cancer - he was nursed at home and died within about six months after diagnosis. I knew he was very ill but never asked what was wrong or whether he would die - no one mentioned cancer or told me anything -because I hadn’t asked and I was too afraid to ask myself. When he died it was a shock for me -though I do think I’d thought something bad might happen but quickly pushed it out of my head. It was too unbearable to have anyone know so I didn’t tell anyone at school - effectively I pushed it out of my mind and was desperate to carry on as normal - there felt to me that there was a huge stigma in being ‘different’ and having this labelling me.
I so wish there had been some kind of grief counselling as I am now,and have been for many years,dealing with all kinds of fallout from this. Really what I’m saying is that children need to be able to express how they feel,but in a way so that they aren’t frightened -and allowed to get the grief out - I so wish I had been able to.
Sorry if this is a bit garbled and apologies for the hijack.

30

I have been honest with my children and answer any questions that they have.

When I was dx in 2004 the outlook didn’t seem all that good, the surgeon was pessimistic and my odds of reaching 5 years before chemo or radiotherapy were 13%, which were brought up to 50 percent when the tamoxfin was added in. I had a couple of close calls with septicemia and on my last FEC chemo was neutrophenic and became septic from a bacteria from the Hickman line. My children were 4 -6 and 10 in 2004. I thought they understood, the main lasting effect of that horrendous year for them was the fact that I lost my hair.

Having now been diagnosed with bone mets (June 09) I realise that they hadn’t really understood and had to start from scratch really. The first question was would I lose my hair!

What I have told them is that now that the cancer has come back, I can’t be cured, it will not get better but there are treatments to try and slow/control. I answer any questions, there haven’t been many so far. Two of my boys have special needs and the eldest has had a increase in his OCD but I am not sure if this is because he has started college or a mixture of everything. I am a single parent, although they see their dad on a regular basis. When I was diagnosed, two of my cousins were also dx’d within a month, so help has been very thin on the ground. Unfortunately cancer has devasted our family and usually up till 2004, when myself and my cousins were dx’ed, the cancer was found and a few months later the person was gone. We averaged losing 3 family members a year for a while, different cancers. So thought I had a very clear idea of what happened, which has now changed since a week ago when I came here. I also realised that things have changed. The last poor outcome had been in 1993.

I hadn’t realised that life goes on once secondary’s hit. There are so many good stories on here, I feel I have jumped the gun a little and also maybe given less hope to my boys then I could have. I know that I have been living in limbo that is for sure.

Sadly, I also feel I have wasted the cancer free time from dx as I have been waiting to succumb! I am still a little bit in that mind set and I need to sort out my thinking.

I do believe in honesty with children but in age considered terms. Very waffly post, sorry. I am on a bit of a learning curve myself.

My mother died from BC in 1984, she didn’t want us to know she had cancer, we were told by her GP but it was a secret and we had to keep it like that from others in the family. It was awful and my mother was so isolated with her illnes because she didn’t want to scare us. We missed 15 months of being able to act normally with my mum and I swore that I would be honest if anything like that happened to me.

31

Thanks very much once again, snoogle.

We live in Germany so a lot of the UK information is not directly relevant to, but thanks anyway, I’m sure you’ll have pointed a lot of other people in the right direction! In case you were wondering, I use this site because I am British and I feel I really speak the same language here! (The Germans do have got a sense of humour it’s just - different…) I would also like to wish you and your family all the best in confronting this awful disease.

Daffy, I am amazed at your strength in the face of so many losses to cancer - you must be an incredibly strong person to come through all of this. I felt really humble reading your post and I would also like to send my best wishes to you and your family.

32

Thank you for your kind words CharlieRay. I can’t say it has been easy but you do get up and go on again.

Reading back in this thread I noticed that your daughter was missing the normal times. I haven’t the energy to be a very active mother to my boys since 2004 but have found ways around it.

I play online games with them. Board games, drawing. These have become special times now. I leave the football and active stuff for when they see their dad. Just listening to them read or reading with them can be special. Just a few ideas that might help.

Best wishes to you and your family.