My husband has stage IV colorectal cancer (diagnosed 8/11/11) and is receiving palliative Chemotherapy. While at the moment he is quite well and is tolerating chemo with few side effects - we won't know for another week whether it is making one spot of difference...
I have a 6 year old and a 9 year old. We are honest with the boys about where things are at, but try to keep things in the present as much as possible. Both boys are aware that their father may die. ('May' is good enough for now.).
I have been very surprised at the lack of support available for primary aged kids. I just assumed there would be something like Canteen or Camp Quality available for them - particularly the older one. There is nothing (I am in regional Victoria).
My 9 year old is having difficulty dealing with what is going on and his behaviour has been terrible. I know that some of it is just because he is 9, but some of it is not. I've a whole range of emotions from him: grief, bargaining, anger... Recently he just wants his father to disappear so he doesn't have to think about cancer.
On another forum topic people have recommended books that may be helpful. I am interested in any other advice or conversation about how to manage young children through this journey.
My husband was dx with grade 3/4 brain tumour 9/10 we had 2 in primary school at the time and I also thought some support would magically appear but other than a couple of chats with school social worker there doesn't appear to be anything. We were not expecting him to live as long as he has and I think my kids behavior is partly confusion as to how to cope with the getting ready for him to be gone and now he is still here. It is all very tough isn't it.
I hope your husband is living 'well'. The whole timeline thing is interesting in its own right. On the one hand you want an idea of how long you have together, on the other hand these are average figures and nobody can tell you which side of 'average' your situation will be on... So, you are preparing for death with a very uncertain timeframe and absolutely no idea about what is about to hit you or how fast your love one is going to deteriorate. I have a whole new view on time now - as I see the weeks disappear in my work calendar, a part of my brain says that is one week closer to losing him (Tony). Your whole way of looking at normal things changes - there is always that elephant in the room. So, I get what you are saying.
We have avoided talking about timelines with the kids. They know that Daddy may die as one possible outcome - but, we emphasise the fact that he is fighting it and that is why we need to give him rest etc while he is having Chemo etc. I have boys, so being quiet is quite an ask from them - I usually have to take them out somewhere or organise play-dates so my husband can get some sleep. The oncologist is more black and white about the fact that Tony WILL definitely die - as the liver tumours will eventually overwhelm him... We have figured that they only need to know that Daddy is dying when the active dying stage begins.
We don't want to give the kids false hope, but at the same time we don't want their childhood to be consumed by grief and we need to try to maintain normal-ish parent-child relationships for as long as possible. So, until Tony is really in obvious decline - we will remain as normal as possible. It is hard enough that I have all the questions.... Kids say things straight though - my 9y.o. told me that he wishes dad wasn't here and he was going to pretend that dad wasn't here! What he was really saying is that he can't deal with thinking about the cancer & dad is a reminder of that... I am gobsmacked that that parents are left to muddle through this on their own.
I am at the beginning of this journey relative to other people on this site, but I can appreciate how the grief fatigue can set in. I have well meaning friends who have said things like "it is good that you are all back to normal now" as my husband is continuing to work as long as he can. Normal? Normal went out the window on the day of this diagnosis! The cancer is there with us every minute of our day... and on nights like tonight when Tony went for a lay-down at 6pm and has slept through, and I am sitting in the lounge room alone with the dogs and goldfish on a Saturday night, I ask myself - Is this my future?
I've also had people say to me: "At least you have time to say goodbye, not like if he was killed in a car accident". This floors me. Yes, I have time to say goodbye, but I have to grieve a living person without being a misery-guts around them and while trying to go on as normally as possible (while preparing finances etc for the inevitable). The 'average' survival rate for people with stage IV colorectal cancer is 24-30 months on Chemo. We are about 4 months in now... this could go on for a very long time yet. If he died tomorrow in a car accident I would still grieve, but in some ways it would be much simpler. This is all very morose isn't it? I am sure that we aren't supposed to think like this, but I find my mind takes me to these places now.
I've rambled on (again!). Look after yourself,
OMG! You and I are living the same weirdness! How do you tell young children that dad can't play because he is sick with a disease that is not going away? As honestly as possible I reckon. I have a 6 and 4 yo. My son was only 7 months when my husband was diagnosed so for him it has never been any different. For my daughter who was three, she remembers before daddy got "the cut". And having to look death and mortality in the face very day is horrible, but I am at a point where I stare it straight down and tell it that it ain't gonna bring me down....I am in control of my feelings, not some maybe.......but there are days and nights where I do nothing but cry at the futile hope I carry and the unfairness of my two beautiful and intelligent children being robbed of a pretty good dad when they have done nothing wrong.....
My daughters teachers and principal have been FABULOUS! The local hospital child psychologist and local area health nurses have been amazing.......so supportive! And my own family have helped immensely. The thing for me that hurts THE MOST is when my mate's husbands come over and get down on the floor and play with my kids, something I have never seen my husband do with my son, and a distant memory for my daughter. It kills me to see how much they respond to that and how much they need a bloke to get down and rumble......I try but it just isn't the same.
I spend late nights on amazon finding self help books on the cheap and the local library too. But I am also learning that you need to look after you......or else the whole family will fall in a heap. I have found courage, determination and strength I never knew I had, but I also have empathy, understanding and tolerance that was missing from my personality before too.
I am also writing a one woman show about this crazy journey....maybe one day young kids will see it and understand that they are not alone and that others are experiencing the madness too......coz it's mad!!!!!
I am sorry that you and your family are having to go through this.
Cancer is an insidious disease, it is cruel and once it is in the body of someone you love, it is in the lives of all the family and friends as well.
My sons are now 8 and 10, at the time of my husband's diagnosis they were 5 and 7. At the time of his death they were 6 and 8.
I chose the approach of being honest with the boys in relation to information, whilst trying to keep it an age appropriate level. Often when a question was asked, I would ask them what they thought the answer was and that would give me an idea of 'where they were at'. It helped me to not overload them with information that they weren't necessarily looking for. It helped me to clarify any misunderstandings that they may have had.
On the occasions that I wasn't sure of how to answer (and there were plenty of them) or didn't know the answer ( ditto), I would tell them I didn't know and that I would find out, or that I needed time to think about it. I always used the 'correct' names for things.
Kids pick up on so much, often (usually) when nothing has been said, they still know that 'something is going on'. I feel if I was honest with them, yes, they may worry, but hopefully it wouldn't be that their minds were running away by imagining all sorts of things........boys imaginations can be pretty full on!!
I made sure that I informed the Principal and class teachers at their school, I had email addresses to keep them in the loop as to what was happening. Open communication was vital and they have been very supportive throughout the last 3 years.
I'm not sure if any of my previous blogs say much about what I said to the boys at various stages of our journey, but perhaps you might like to look at them and see if there is anything there that is helpful to you.
I can say that I am very proud and constantly amazed at how 'well' my two precious boys have 'coped/managed' during their Dad's illness and following his death. They are the reason I get out of bed every day. The routine of school is a very helpful thing for them to have, it gives them a place to go that is a safe and stable environment.
We tried the counselling option, before Greg died, and both boys were VERY reluctant to attend and were even anti me going to see her on my own.
When their world is being turned upside down, they need to know that they can trust and rely on the people within their immediate circle. You will know them better than any counsellor, trust your judgement.
I wish you all strength and wisdom, courage and love,
I have not been online for awhile as things have been going along pretty smoothly for the last few months. My husband had Sirtex therapy in September which has killed off a good number of his liver mets. Unfortunately the Radiologist who did the procedure could not access the right side of his liver, so those tumours are still there. There is no spread anywhere else in his body still. It has given us a glimmer of hope, but as all of us on this journey know - the news can turn around at any time. His next PET scan is at Easter and we'll get the results when we get back from our Easter holiday. That will be a tense appointment as it'll determine whether the 'dead' tumours are still all dead (i.e. not just stunned) and if there are other treatment options - or Sirtex to the right side of his liver. Anyway, he's having fortnightly Chemo, but life is more normal than it has been for awhile. He's still working 3 days a week as a teacher.
Thank you for the replies to my original post. They have confirmed that I am on the right track. My boys are doing remarkably well at the moment. Their school has been fantastic with them. They both refused counselling, and I only saw the Palliative Care counsellor once and spoke to her over the phone. She made me cry - I don't need that now.
I am preferring to live today and worry about the future later. While his health is ok, there is no point wasting time on dwelling on the future. My husband keeps telling me that we all think we are going to live for ever, and we 'think' he's going to die of cancer - but, he could get hit by a bus tomorrow. His black sense of humour gets me through - there is truth in what he is saying. He is remarkably strong and positive.
I took a redundancy from a very stressful job just before Xmas, and now I am looking for a job I want to be in. My husband's insurance and Super has paid out, so we don't have a mortgage or loans any more. Strangely, we are in a good spot right now. Lets just enjoy it while it lasts!
Take care everyone - this is not a fun journey, but having somewhere to write down thoughts and know that you are not alone is very helpful.
Hi there. Reading your story is positive for me. My wife has just been diagnosed with myeloma and we have two kids 4 and 8. Everyone is worried about my wife as of course am I, but I am really worried for the effects of this on the kids. Feeling pretty protective of them at the moment. Other people seem so focused on the cancer that the kids are forgotten or maybe people just dont want to think about that side of it. Anyway thanks for sharing. Helps me be able to feel positive.
Sorry to hear about your wife's diagnosis. I understand where you are at. It is a difficult and strange place to be in. The journey is not linear - there will be ups and downs. In my experience kids are amazingly resilient - and they will need you to be the constant in their life. I don't hide my emotions from them and I give them the space to talk & cry if needed. Kids are often forgotten - and so are spouses. It is an awful lot to take in and it isn't easy as treatment goes on.
Things have calmed down for us in the last 6 months as Tony has been stable, but he had a PET scan yesterday which dictates what happens next - always a difficult time. We don't get the results until next Wednesday. I have a job interview on the same day, so I'm not sure I'll get to the appointment which is not all that good. Tony has "chemo brain" (yep, it is real) and I am not convinced I'll hear the full story / outcome.
Without knowing your wife's prognosis, I would recommend linking in with Palliative care early. They are not only there for the last laps so to speak. We had a great GP who recommended this - initially both of us were horrified at the prospect. They can provide some confronting, but important information about what is 'normal' - e.g. I was desperate for my husband to starting journalling etc for my kids, but they advised that 95% of people can't / won't do this because they can't face it (even mum's who you'd expect it from). I get that now, so I've stopped asking. They also have some resources (can get them on the Cancer Council website) that may help your older child - although my almost 8 year old still doesn't really get the 'death' concept.
The Palliative Care people told me about activities they do with kids to, for example create memory books about their parent who has passed away. This made me feel better. They also told me about their experience of working with kids and how they cope after their parent dies. This reduced my anxiety quite a bit. As a parent you want to protect your kids, but there are some things you just can't protect them from.
My kids know that sometimes bad things happen to good people, and it isn't necessarily anyone's fault (my older son wanted someone / something to blame). I am honest with them about what is going on, but keep it in the 'now' - i.e. I don't go too far ahead. They know death is a possibility / probability even, but they also know their dad loves them and is fighting very hard. One of my girlfriends died of Melanoma just before Xmas, and they had the benefit of knowing how hard she fought (initial prognosis 7 months, survived more than 3 years) to be there as long as possible for her 12 year old son.
The cancer council has financial advisors who can help access super etc (it is means tested - even though we were originally told it was 'free'. It cost us about $2K - but, we accessed 4 super funds & insurance - all paid out without hassle except REST which required a bit more of a push). We also got the early pay out fees waived on our mortgage on compassionate grounds - we had our mortgage with AMP and I couldn't speak more highly of them.
Everyone's journey is different. I hope that your wife can be cured, or at least show the bastards (the tumours) who is boss for as long as possible! As my husband says, we all have to die of something... we'd just like to do it on our terms! Have faith in your own strength - it is pretty amazing what you can get through. Always happy to chat, so send me a message if needed. I find knowing that I am not the only person out there going through this enormously helpful for coping with my own journey.
With love & best wishes,
Thank you for this post- it has been helpful- even though my children are only 1 & 4
Scott- I am so sorry to hear your wife's diagnosis. You have a rough road ahead, pull your family support close, and allow help (even if you are stubborn)
My husband is 35 with brain cancer (I am 31)
It's shit- we are so young, and our fricken kids are so young- and yet we have to go through this SHIT! This unimaginable nightmare!
Expect some of your friends to fall away, they struggle to understand how hard this journey is. And thats ok, everyone copes the best way they can.
Spend lots of quality time with your kids, esp. one on one time.
Expect that sometimes, you will lose your temper- be quick to address it & tell your children that you still love them & you are sorry for losing your temper. (Some days just feel so frustrating!!)
And most of all, take time to relax with your wife, maybe a nice quiet dinner.
Anyway- feel free to message me if you ever need to chat- or just rant away.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.