My teenage son died - AMA

[aloneinthenight]

My son died from cancer when he was 14.

We are so bad at handling grief in the UK.

People never know what to say, and feel uncomfortable, or worry about getting things wrong.

So ask me anything you like and I promise I won't mind.

Thanks for answering OP.

It must just be so incredibly challenging dealing with the ever changing dynamics you are all experiencing.

@aloneinthenight His mum messaged back after a couple of minutes and I sent across all the pictures I had. She's been so sweet and we're now both in tears.
I'm so glad I read this thread tonight.

Thank you so much for sharing your story.
Once again, I'm so sorry for the loss of your beautiful boy xxx

Oh @SouperNoodle that's so lovely to hear. Well done 🥰

That's really beautiful and I think that's a very healthy way of processing what happened. 😊

@aloneinthenight I am so sorry for the los of your son. My eldest son died aged 18 from brain cancer, nearly 9 years ago.

So much of what you have written here today is exactly how I feel.

My other son (now 25) is only just now, 9 years on, just beginning to process/grieve/ask difficult questions about his brothers illness and death. He was only 13-15 when his brother was diagnosed to when he died. We have spent many years tiptoeing around each other, trying to protect each other from this pain. My son is now ready to face it all and I'm now having to relive it all to help him through it.

It took us about 4/5 years to sort out our sons headstone. Finding the right 10 or 12 words that sum up your child or your love for your child that you can only engrave once and for all eternity was an impossible task.

I hate visiting his grave. It's a beautiful graveyard, beautiful church, lovely village. I have visions of going there,sitting and chatting with him, feeling him. The reality is I go there, place a kiss on his headstone, tidy anything up, stand blankly at his grave and leave as quickly as I can. I don't gain Anu comfort going there, I don't feel him there, it's still a shock to read his name in the headstone. I talk to him in my garden, at night, up at the stars.

There is so much I'd love to talk to you about. It's still a relief to talk to someone who understands, when I don't have to protect them or me. When I can say it as it is.

@minmooch I'm so sorry you've also lost your lovely boy.

I completely agree about the grave. It's just so weird and I don't like it. It's not that I find it upsetting, more that I just don't know what I'm supposed to do with it.

Sometimes I buy myself flowers, rather than taking flowers there. That feels like a better use of my money and a better way of keeping him with me. A lovely cheery jug of daffodils on my table is much better.

Also, we have reserved the spot next to him which is just wrong. Everytime we go we have to stand on our own grave.

@minmooch I've sent you a DM.

I have another question if that’s ok. Not one you have to answer if you don’t want to.

Do you ever wish someone else’s kid had died? Instead of yours. Or feel really resentful of people who haven’t had a child who died?

I guess I can imagine being filled with absolute rage at something like this happening to me and wouldn’t know where to put that. So might put it onto other people.

It's a really good question.

It's not fair, none of it is fair but I've never gone so far as to wish someone else's child has died.

I do regularly think that other people's children aren't as good as mine. I do secretly get a bit grumpy about unremarkable or unpleasant children. DH and I often mutter 'he's just not as good' about other children which we allow ourselves to do without feeling guilty.

One thing I do have an unhealthy rage about is boarding school. I've never particularly been in favour but I have a couple of friends whose children go to boarding school and I can't quite get past it. It feels unfair they they don't want their children and I wasn't allowed to keep mine.

I know that's not a very fair opinion to have, and not a reflection of their feelings or motives, but it feels like a good focus for my rage.

And people who treat their children badly, or who put too much pressure on them.

So on the whole, my rage gets directed towards other parents rather than their children.

This has made this entire thread worth it. Well done 👏

This is such a helpful thread.Thank you so much for creating it OP.

Hi OP.

May I share this podcast with you where the comedian Rob Delaney talks about the death of his son. I find listening to other people’s experiences useful as I’m not a talker. The podcast is based on his recent book.

podcasts.apple.com/gb/podcast/how-to-fail-with-elizabeth-day/id1407451189?i=1000583240307

I can imagine all of that. I totally get the boarding school thing. I don’t really get sending your kids away anyway.

@aloneinthenight this thread has made me cry. I am so so sorry for the loss of your son x no other words. Xx

I'm so sorry @aloneinthenight

Like @GHS78 my son is also in treatment for ALL. He has a particularly aggressive kind so we were offered to try immunotherapy. But, as we're the first people to ever do it at this stage in treatment there is no prognosis they can give us. The fear of relapse is ever present, but I am eternally grateful we still have him.

I'm so so sorry for your loss. But thank you for starting this thread and giving us, who have genuine fear of losing their children, a reason to show you can continue and you will survive ❤️

Sending you all my very best wishes and I hope things go well for you all.

I know treatments are moving forward and getting better all the time.

We now have a charity for my son to raise funds for research, and it's good to hear of people who might one day benefit from it.

Thank you for this. I love him but haven't heard it.

@aloneinthenight i am so so sorry for your loss xxx

Rob did quite a few interviews about his son. He speaks so candidly and beautifully. They are very raw to listen to, I found (over a decade after my child died), but his words were very insightful.

@blankittyblank I’m sorry you are going through this with your child. Wishing you much strength.

I’m really sorry to hear your son died. I can’t even imagine what losing a child must be like, but I was a child when my first parent died and after the initial couple of weeks I went back to school like nothing had happened and it was so odd. It was in the 80s and no-one really talked about ‘stuff’. My form tutor tried, bless her, but I just said we were fine for money!! I didn’t want to go there…
Were you working outside the home when it happened, how were you supported by your company (or your husband and his)?
Times have thankfully changed but grief is still a bastard.
And agree with the cancer/battle language - I hate it too.

I'm so sorry that happened. A friend of mine's Mum died in the 80s and I'm sure her experience was similar.

I was self-employed when he was diagnosed and stopped pretty much completely. We could claim DLA after 3 months but it wasn't much.

I went back to work a couple of months after he died but I've found it very difficult. I'm probably only now getting back up to speed.

I'm a limited company so I didn't even get anything through the Covid payments (which would have solved a lot to be honest).

My husband's company was great but he didn't take much time off. I wish he'd taken more but also glad he was able to keep things on an even keel.

Financially we're quite screwed now and I'm trying to pay back the credit cards I wracked up over the past few years.

It's rubbish, on top of everything else, that we can't afford nice things.

Thank you for sharing this OP, you’ve just put my experience of grief into clarity. I never realised that feeling this was what provided me with a sense of peace.

Thankyou for sharing your story too. It’s been quite an emotional read. My heart goes out to you, truly.

Hi, I don't know if you are still coming back to this thread OP but if so may I firstly say how sorry I am that your DS has died. That must hurt so, so much.

If you're still taking questions, I hope I'm ok to ask whether or not you still feel joy? Do you have moments of contentment or is your heart always too heavy? Do you sleep well? Is it true that time eases the pain at all?

It must truly be the worst thing that can happen to a human being.

My friend's DD is currently undergoing treatment for cancer. She has relapsed and the prognosis is poor.

Will obviously do everything I can to support the family should the worst thing happen.

Thank you for this thread and your honesty. Best wishes to you.

@Bugsy73 it's a really good question.

Yes I do feel joy still, and I could even say more than before.

My world is a lot smaller but I find joy in a sunny day, a really good cup of tea. I read a lot and find joy in that. I also laugh a lot still and still feel joy for my surviving child. We're probably overall more contented than other families because we don't care about the small stuff.

It's a cliche to say it makes you appreciate things more but it does. I think i now feel everything more intensely.

Everything is heavier though and everything is edged with that sadness, even if it lifts for a while.

I'm less good at small talk though. I always used to be quite sociable but now I can't stand inane chit chat.

I sleep well most of the time. I was so exhausted after months of hospital stays that I slept a lot straight after he died.

Now I prioritise my sleep religiously. I cannot cope if I'm tired, I completely unravel.

I still have nightmares occasionally, as does my husband. I also dream of him to occasionally which I love. And some mornings I wake up and forget he died.

Time doesn't ease the pain at all, but you get used to carrying it so it's not so awkward and uncomfortable.

I'm so sorry about your friend's daughter. I hope things work out for her but I'm sure you'll be there for her Childhood cancer is an utter bastard in every respect.

Thank you for responding. It's a comfort to know that you have managed to carry the positivity that he brought to you, forward into your new reality and that this is a possibility for those going through the same.
Such a terrible thing for you to have happened to you. I can imagine how lovely it is to seem him in your dreams.

Thanks again xxx