Hi, we are in a similar situation to you.  My husband (43) was well and fit, ended up in hospital with suspected gallstones which instead ended up being stage four cancer of the oesophagus with tumors all through his liver.  We were told without chemo he only had 4 months to live.  Even with chemo, under a year, though we are obviously hoping for longer!  We have two girls,  8 and 12.  Our children being older, it was hard to hide things, so we have been honest from the start.  My younger one hasn't seemed too bothered by it apart from affected by him being really grumpy after chemo (there is a steroid they give him for anti-nausea that makes him very agressive and angry to us all called dexamethasone, watch that one if they give it to you, it made our lives hell!  He now only takes it the day of chemo and gets over the anger quicker, didn't think it was helping that much with the nausea anyway).  She's also been affected by me not feeling up to playing princesses and dolls with her as I used to.. though as time has passed I have been able to go back to it though not as much. Cancer diagnosis really takes your 'spark' away. She's quite matter of fact about Dad going to heaven and meeting him up there later! (Even though we are not religeous they go to a religeous school). My husband is not a believer but I have asked him not to keep saying that to her anymore as it gives her comfort and I feel will help her through. My older one is trickier at 12 years and has just been diagnosed with an eating disorder, they think it may be that its happening due to feeling lack of control in her life- apparently when they can't control something that's happening to them they often turn to controling their eating instead.  I;m trying to get her some counselling through the cancer society here (we live in NZ but are british citizens and thinking of returning as there are some meds and drug trials going on in UK not funded here which is why I am on this forum).  My husband was given his prognosis in may and has been having chemo which appears to have shrunk things down but it is also only pallative care.  It's a weird way to live. We've been trying to spend as much time together as possible, when he's well enough we whip the kids out of school and go away, priorities change.  As time has gone by it has got easier to sleep / eat etc, I've also gone on an antidepressant to cope.  There are some really good books around for kids about this but I've found it too close to home to read any to them yet though I guess I will. 

Hi both,

We have got the same situation as you both. Our kids are older, 12 and 15 but my husband is 41. We found out in June when they suspected gall stones- no symptoms before that. He has stage 4 bowel cancer with  an 8.5cm mass and others in his liver. They won’t operate on either. The chemo is life extending, he’s had 12 bouts now and it’s shrunk to about 3cm. We are now on a chemo break for 3 months although they want him to have a nasty additive in the new year to slow the regrowth. I call it nasty because he had horrendous skin infections on his face from it before; that got him very depressed. We are trying everything naturally too to try to prolong his life, everything from every culture. 

Apart from this horrendous unknowing of the future hanging over our heads, we have been unable to plan in advance as we don’t know how he will be. He is struggling mentally with the change in his life, he cannot work, he is much angrier and although I want the children to enjoy their time with him, it often ends in arguments- there appears to be no fun side to him anymore. It’s so difficult  on them all.

Both our kids know and we keep them updated at every scan and every point. My 12 year old has a book about a parent having cancer. They are both very close to me but they don’t talk about the diagnosis, they want to be as normal as possible, sometimes appearing selfish to others by putting themselves first but I think it’s their coping mechanisms at the moment. As for telling young children, I would get a book that is made especially for that age or make a social story. They won’t really understand the implications, but hopefully that will protect them a bit. It’s awful that kids should have endure this, it’s bad enough for adults. I have heard that stage 4 can go into remission, let’s hope we are all lucky enough to have that happen to us. A few more years of memories would be lovely. Sending love to you all.

Hi

It sounds as if you are going thru very similar... we are having problems with the anger too at the moment and I know the whole thing is unfair but I had to actually say to him that I don't want the kids memories of him to be him angry and shouting at them... no one knows how long he will have but we are hoping a lot longer. He finished his chemo and was meant to be having a decent break but a scan showed new large tumors in the liver so straignt into a new regime which has really got him down.  But we are now trying herceptin (not funded here in NZ so $4100 every 3 weeks!) but as he had a strong positive test for her2+ we are hoping it will help - oncologist said it could give him 'short years' instead of probably just months without it.  And you have to hope a new drug may come in, or with diet and nutrition it will extend things out until cancer is finally treated as a 'chronic disease' and you just live with it, what they say the future will be within ten years but needs to happen faster for us!!!  Getting some side effects though like bleeding noses, upset stomach and he's not happy about it.  I kinda think its minor compared to the alternative... but then I am not the one suffering the effects.  We have managed to get my 12 year old into counselling but nothing for the 8 year old yet, I didn't realise quite how much she understood until I heard her talking to her friend at the weekend - "Do you know your date of death?  I don't , but I'm pretty sure I know my Dads, I think it will be next year".  Broke my heart, but I still think it's better to be honest.  It's certainly a weird christmas this year, but back in May we were told he may only have four months left, guess we are lucky to even have him here...it's tough on us all....

Hi,

I had a mixture of heartbreak and positivity reading your post. We had exactly the same conversation regarding anger and memories he's creating, it's so hard. Your daughter'sconversation broke my heart :'-(. 

The targeted drug you mention is given for breast cancer in the UK.  I can't believe it's costing that much. We are spending amount £1500 a month on alternative medicines too, have to try don't we!?!

Yes, got to try anything!  Herceptin is funded in NZ for breastcancer (though only came in this year) but not for oesophagus cancer, though it is funded in UK and Aussie for gastric cancers.   We could move to UK as we are british citizens (the kids aren't, trying to get their british passports sorted out at the moment in case!) but he doesn't want to move, and it would be so hard for the kids too as they have grown up here.  His immediate family live here too and his mum is not keen on us moving away, so much so that she is paying for the treatment at present!  After 3 goes he will have a scan to see if it has done anything.  If it has and we hope so, then decisions will have to be made...  At this stage I will try first with a give-a-little fundraiser and going to papers / womens weeklys etc to raise awareness of how unfair it is that it is not funded for his type of cancer here, some people have said to me it is discrimination!  New Zealand is quite behind in funding cancer drugs that other places have funded for years, with elections next year it's a hot topic for debate at present!  It's really hard on the teens I think to deal with something like this, my little one just believes he will pop up to heaven and she will see him there later, older one understands more.  But is at that age where they are naturally starting to pull away from parents, argue about anything, all hormonal and difficult etc!  But having to carry the unfair guilt of having an arguement with a parent who may not be around much longer is huge. (In fact its really difficult for us too!)  It's nice to be able to talk to someone else going thru the same type of thing, I know nobody here with children our age dealing with it, we go to a cancer support group but they are all older with grown up children, it's really not the same.  And hard on us being the support person, mother, wife, and trying to get everyone thru this plus ourselves somehow!!!!

Also, look out for a drug called dexamethasone, it's a steroid and my hubby gets it for anti-nausea when he has his chemo and it causes serious mood swings and outbursts of anger for several days afterwards.  So bad we have to stay out the house or we all cop it big time, particularly the kids. He gets so mean my 12 year old actually said at one point that she hated him and hoped he WOULD die soon, so heartbreaking and just awful for us to have to go thru this, there's nothing like it and other people really don't understand the implications on the whole family.  When I try to talk to his mum she just says "Oh dear, it must be so awful what he is going through".  Yes it is, but it is horrible for all of us, and while I understand he's in pain, and feeling like crap, and not the 'normal' him, the kids don't, and unfortunately kids always rememeber the bad stuff most!!!!

I agree, it's so refreshing to speak to someone younger. The support groups are all older people who tell us we are 'too young' to have cancer- if only! 

If it works then definitely the fundraising is an excellent way forward. There is no way that it should be funded for some and not others, that's so unfair if they think it will help!!! When is your next scan?

We had dexamethasone but only for 3 days post chemo, I didn't really notice that much of a difference anger wise when he's on it but chemo and teenagers definitely don't mix! I find it exhausting really, it's like having an extra teenager sometimes and yes my kids I'm sure have thought the same as yours! It's so tough for the whole family. I cannot imagine what he must be feeling and thinking. I know it must be horrendous to not be able to do everything you could normally do, I would surely go mad. Like you said, not everyone thinks about the kids or the partners- luckily I have had some good support here. Especially when they have seen some of his anger moments now.  He started counselling last month and I'm sure it will help but I wish it was more frequent. We haven't been able to get counselling for our kids unfortunately. How was your Christmas? I don't know how to pm but you are welcome to if you want to chat more.

I feel for you - I am 35, with two boys 2 and 4. I've been through the same surgery, and then chemo. Mine was stage 3. Future still rather uncertain. 

Its not been easy. The eldest boy wanted to know what had happened to me - we've tried to answer his questions as they come along. He calls my stoma "Daddy's second bottom". Both will ask on occasions to see it - and want to show it to other people. My eldest very soon picked up when I was going to hospital for "Yucky medicine" (aka chemo). I asked him why he called it that - I had never heard him say "yucky" before - he replied, "Because it makes you ill." 

The MacMillan team have bene brilliant and they have a book about telling kids about cancer which my wife found helpful.

I lived through my Mum having breast cancer when I was 13, so I have seen both sides. I remember reading the kids book "A Monster Calls" several years after, and could really identify with it. May be worth getting a copy and taking a look at it. There are also several good children's books out there, although we havn't personally given any to our boys. 

As for memories - spend as much time with them as possible, doing what they want to do - not what you want to do. The memories are for them to remmeber you, and they are far more likely to remmeber you doing the things they want to do, even if they seem little and boring. Get photos taken with them as soon as possible, photos once chemo start are not the way you want to be remembered by them. think about making memory boxes for them, or buying them presents for future birthdays to be kept for them if you should die sooner rather than later. These are things we have looked at and considered. 

Dear Everyone who has posted I am so sad to read all your stories but angry as well that everyone diagnosed is below the "expected age of someone to have bowel cancer".  My son was diagnosed with stage 4 bowel cancer and liver mets, he was actually sent home from A&E as they said he was not ill enough to be there.  He had been vomitting for 12 hours and in extreme pain, they gave him pain killers and sent him home saying you will be ok in the morning.  We managed to get an out of hours doctor to have him admitted to a surgical ward and from that moment our lives changed dramatically.  All I can say to you is cherish the time each day is a special day make memories take photos my biggest regret is that I did not take many videos of him talking but we did a lot of things.  He got married 10 days after his bowel tumour operation wedding was already planned.   He filled very day unless it was the 3 days in hosptial chemo week.  I wish you all well, it is a very hard road and with young children so difficult.  love lesliexx

It is a cruel destructive and very frightening disease to be diagnosed with at any age. I lost my mother to Breast cancer 8 years ago, bless her, she fought right to the end insisting no hospices for her. Although the doctor at that time agreed with my mother that this was nowhere nearly over even though it was clear my mother had fought so bravely, her body was tired and she could hardly move even the nurses looks told me she really should be in a hospice. She died at home where she wanted to be surrounded by her daughters and her granddaughter, my daughter.

My daughter was diagnosed with colon cancer in October last year. She is 35 years old.

It has shattered me. When they were doing all the scans to see if it had spread it was the most frightening experience. (Luckily it had not spread to other parts). She had had bleeding for months and assumed it was her piles. When she went for her investigations they found a very large polyp and a few smaller ones. She was told how unlikely it was to be cancer by her own GP and the doctors treating her.

Four weeks went by... yes, it was the last thing we had all expected. My reaction was "are you joking me"

It was my worst fear becoming a reality for us. I'm still in shock and falling to pieces with the fear. She has  children, 12 8 and 4.. Her husband left her after12 years together which some have suggested it was the shock and stress of him going that may have caused the cancer by having such a low immune system due to her not taking care of herself when he left.

She had the colostomy 4 weeks ago, she has a stoma which she finds very hard to accept although this is only temporary....  we are waiting for results in a few days time to see if the lymph nodes in her bowel are clear.

I am finding it extremely hard to be strong for her and my grandchildren and the worst part is looking at my daughter knowing what she is feeling and fearing....I wished it was me going through it not her. I dont want to wake up sometimes. Im tired of constant struggles in my life, but, it is what it is, cant do anything  about whats in store for you.

I have read alot of your stories and it is so sad and cruel, everyone is different with their experience of cancer, my dad has it too, a slow growing prostrate cancer apparantly. He is 83, but, still.....  what is life all about? Curbainxxx