How do you deal with this with young children? I am having a real hard time telling them I won't be around much longer...they are too young to understand...anyone in this situation?
FormerMember
Hi
I am so very sorry to hear you have this added burden. My kids are now 14 and 19 but have been living with cancer for five and a half years and were 9 and 14 at the start. I suspect yours are younger?
Our dear friend has a very young daughter but we’ve not heard from her in a while. I’ve tagged her so I hope she’ll be able to get back to you.
There’s a useful Macmillan booklet you can download here
The people who’ve helped me most in how I’ve dealt with talking to my children have been the nurses - first the clinical nurse specialist I talked to when I was diagnosed and then the hospice nurses. My policy has always been to be honest with them but only in so far as they are able to understand.
So can I ask very gently, if your children are too young to understand that you won’t be around much longer, do they need to know this? You’re alive today which is, after all, what matters most. And who knows? You might be around longer than you imagine. I’ve been living with incurable cancer for three and a half years now - much longer than I thought I’d last. There are enough people in this community who are well past their sell by dates to give us all hope
I too am so sorry you're dealing with this. I have a young family and it's been the hardest part of having cancer. I was told to tell them I was dying last year (I had a very short expiry date predicted). My children were 6, 8 and 10 and it was heartbreaking. My (only just turned) 6 year old howled but didn't really get it. She's been the most matter of fact throughout the whole process. My psychologist told me children recover very well from a trauma like this and it's often much more difficult for us. She said children don't fully understand the concept of death until 7. She did advise that ensuring they were prepared was important as a shock is harder for them to process. They also fear more if they're not told what's happening in a way they understand and is appropriate. So hard.
I was also told to keep telling them that they will always be looked after and loved by a grown up they know (we've made plans for that too). That's the hard bit for me, I'd prefer it was me!
How old are your children?
School has been a big help, a safe place and consistency for them. I've also had access to play therapy for all of mine and I can definitely see the benefit of that.
Conversely, I have been getting better as I tried an alternative treatment so things are not as bleak as they were and that too was very confusing for them. My youngest kept asking why I was still here. She also said she was looking for a new wife for daddy!
I tell them the truth that I'm still unwell, still need medicine and I hope it will keep helping (not curing) for a while yet. I don't offer false hope and I don't make promises. When they ask to go to (Disneyland) I say, we can try and make a plan but if I'm not well we may have to change our plans, they're very gracious when that happens as their intuition is remarkable. They know when I'm struggling even if I think I'm doing a good job of hiding it.
There are others too with little ones, please know you're not alone. Let us know how you're getting on. I really hope you have the help around you that you need.
can I ask you what kind of treatment you are doing and what alternative therapies that will be great to know. I am willing to try anything my kids are only five and nine and it’s very hard on my nine year old really. She does not understand what dying means and she is so scared it is breaking my heart. I don’t want to leave her.
Hi . So sorry you find yourself in this position. I am in my 30s with 2 young children (3 & 9) I was diagnosed at the outset with secondaries. It has been incredibly hard and I still have times I struggle with it all but I decided that I didn't want to share the news of the incurable status with many people (there is only about 10 people that know) and my children don't know yet. My cancer is not a secret but don't see it should make a difference to others.
My children are aware that I am ill. My oldest knows about my treatments etc but we felt she had enough to deal with with that than spending her time wondering if I would be there when she got home from school etc or worrying anytime plans changed. There will be a time that we will but at present I didn't feel there was a benefit to her to know or worry. We take each day as it comes. Currently I am feeling well so It is a very personal decision and don't think there is any right or wrong. School have also been very helpful in giving her additional support too.
We fill our time (that isn't appointments etc) with fun things, we live for the day and try to create lots of happy memories with the family. Regardless of cancer we all only live once so need to make the most of it.
Treatment wise. I've had some hormones etc and am about to start chemo 4. Unfortunately my cancer is being a bit of an ar** and not responding for any great period of time but I'm not planning on giving up anytime soon. Just need to find the right one.
Apologies for the slow reply - had a crazy busy week with children starting school, my treatment and a funeral (cancer) so gave myself a few days off cancer to recharge.
How are you doing?
To answer your questions about alternative treatment - in my original post I was referring to the immunotherapy (I'm on pembrolizumab) that I managed to get as I was resistant to chemotherapy but it wasn't easy and I have had to go privately for it as the NHS refused it for me. I believe it's opening up but I'm not that knowledgeable about who it suits and which cancers it can be prescribed for. I did some research on which dr's were worth seeing, requested a second opinion and thankfully she had some options. I'm not that keen on researching the treatments as I am not medically trained. I do ask lots of questions though.
I haven't researched anything else as I'm trusting my oncologist with that.
At the moment I'm stable but the side effects are tricky. I'm struggling to get my head around incurable but stable (never satisfied) and the limbo land that puts me in and it's awful knowing that my children are watching me struggle (despite my best efforts to hide it all). We have lots of times of 'normal' and I'm advised that those are what the children remember - the everyday loving acts of kindness.
I hope you're okay. I'm sorry this is your reality too.
