Page 3 | My teenage son died - AMA

aloneinthenight · 2023-01-28T17:37:48+00:00

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.

HelloViroids · 28/01/2023 21:15

So sorry for your loss OP.

One of my oldest friend’s son has terminal cancer - he’s primary age. Her DH is still working and high earning so I dont think they need money, is there anything else you suggest I do/say? Other than “am thinking of you”?!

Original poster

aloneinthenight · 28/01/2023 21:15

yaboreme · 28/01/2023 21:09

I'm so sorry for your unimaginable loss. 14 is so young and must cause utter heartache everyday.

Was your son Ill before he found out he had cancer? How did you find out?

Also, I wanted to say after reading your thread that im not religious either but truly believe that presence can be felt with the wind and skies, I always felt silly saying it but I sometimes think that it's a passed loved one giving me a little nod

He was a bit off colour and then was ill for a few days. We thought he had glandular fever and the GP ordered blood tests. It was a very swift diagnosis.

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WoeBeCome · 28/01/2023 21:17

How is your other son? One of my biggest fears is not only one of my kids dying, but also what the impact would be on my other child. It must be hard to manage your own grief as well as your surviving son’s

Original poster

aloneinthenight · 28/01/2023 21:17

Riverlee · 28/01/2023 21:13

Love to you all. Is there any reason you posted this now? His birthday? Anniversary of when he died?

I only ask because my son was seriously ill in GOSH twenty years ago. At the end of January, every year, I always become a bit introspect as I remember the time. I sure it affects my mood slightly, but I don’t talk about it. Ds, thankfully recovered and has no lasting health problems. I wondered whether there any particular trigger for you posting this now.

It's a tough time of year.

We were sorting out his headstone today which I think is something no one thinks about.

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Original poster

aloneinthenight · 28/01/2023 21:21

HelloViroids · 28/01/2023 21:15

So sorry for your loss OP.

One of my oldest friend’s son has terminal cancer - he’s primary age. Her DH is still working and high earning so I dont think they need money, is there anything else you suggest I do/say? Other than “am thinking of you”?!

Maybe ask what distractions she'd like.

I love a picture of a dog in a jumper.

There's a line between telling people your shit that they don't have capacity to care about, but also making them feel connected to the real world.

That's a tough call that you can't get right every day to be honest.

I would say though, ask 'how is today' rather than 'how are you'

The answer to how are you is always going to be shit but how is today allows a bit more scope for chat or opening up.

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Original poster

aloneinthenight · 28/01/2023 21:24

WoeBeCome · 28/01/2023 21:17

How is your other son? One of my biggest fears is not only one of my kids dying, but also what the impact would be on my other child. It must be hard to manage your own grief as well as your surviving son’s

He has been remarkable and I have incredible gratitude for that.

We talk a lot and he knows he can say what he needs. I worry a lot on how it will effect him as he gets older, and am determined to make sure I am there for him, and not irreparably broken.

But he sees me upset and I tell him when I'm finding things difficult.

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Cherrypies · 28/01/2023 21:26

Hello
Very sorry for such a huge loss, for you and your family.
May I ask did you have a thread from your sons bedside, in ICU think ı remember it, everyone was so compassionate and willing your son to improve.

Sorry, if it was not you.
It just stayed with me.

Original poster

aloneinthenight · 28/01/2023 21:27

In some ways there are positives. We have a different perspective. We are very close and feel things more deliberately I think.

He knows I'm never going to give him a hard time about exams etc, but also he knows that it's not worth wasting time on silly things.

I'm very proud of him, and the family we have changed into.

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GHS78 · 28/01/2023 21:27

So sorry for your loss and thank you for the thread, it’s been really interesting to read. Particularly as my son is currently on treatment for ALL. I generally try not to think about the possibility of him not making it as it sends me into a bit of spiral, but I don’t know that it’s a very healthy way to approach his treatment. Had you considered the idea that he might not make it before it happened or did you try and stay positive? Do you wish you had thought about it more?

Riverlee · 28/01/2023 21:28

You mention you are sorting out his headstone? Was you son’s death recent?

Original poster

aloneinthenight · 28/01/2023 21:28

Cherrypies · 28/01/2023 21:26

Hello
Very sorry for such a huge loss, for you and your family.
May I ask did you have a thread from your sons bedside, in ICU think ı remember it, everyone was so compassionate and willing your son to improve.

Sorry, if it was not you.
It just stayed with me.

Yes that was me. He wasn't in ICU but we were in isolation because of Covid and he was very poorly. He came through that but died a month later.

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WoeBeCome · 28/01/2023 21:30

aloneinthenight · 28/01/2023 21:24

He has been remarkable and I have incredible gratitude for that.

We talk a lot and he knows he can say what he needs. I worry a lot on how it will effect him as he gets older, and am determined to make sure I am there for him, and not irreparably broken.

But he sees me upset and I tell him when I'm finding things difficult.

Show quote history

Thank you for answering. I also like your option of asking someone ‘how is today?’

Original poster

aloneinthenight · 28/01/2023 21:35

GHS78 · 28/01/2023 21:27

So sorry for your loss and thank you for the thread, it’s been really interesting to read. Particularly as my son is currently on treatment for ALL. I generally try not to think about the possibility of him not making it as it sends me into a bit of spiral, but I don’t know that it’s a very healthy way to approach his treatment. Had you considered the idea that he might not make it before it happened or did you try and stay positive? Do you wish you had thought about it more?

I'm so sorry and I do hope that things go well for you.

At the beginning we were told it was 'the good cancer' and we were all very positive. But nothing went right. He didn't respond to chemotherapy at all and never got into remission in induction/consolidation. He had a particularly aggressive kind.

I don't think we could have handled things any other way.

I was very insistent right from the start that I didn't want odds or statistics at any point. I had one child and I only cared about that one. My focus was always 'what is needed today' and not to think too far into the future. I don't really regret that.

And also, all the 'making memories' stuff you feel compelled to pack in.

I miss watching films together, I miss hot chocolate and pancakes. I don't miss day trips and big events.

But I wish I'd taken more photos.

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Original poster

aloneinthenight · 28/01/2023 21:37

Riverlee · 28/01/2023 21:28

You mention you are sorting out his headstone? Was you son’s death recent?

It's been nearly 3 years. That still feels very recent but isn't really.

The headstone has taken us a long time to decide on and not something we've been keen to do if I'm honest.

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LittleJules59 · 28/01/2023 21:42

I'm so sorry. I can't imagine the grief. All my love.

Plonkety · 28/01/2023 21:45

Thank you OP. This is a very insightful and helpful thread that's already helping me work out some ways of helping my sister in ways that will actuallymake a difference and matter.

I'll be honest. I'm tired of seeing the same comments from other people on her social media...
You're a fighter
Kick cancers arse
You can beat this
You're too strong
You've got this
You'll win this battle
It didn't get you last time, it won't this time
Etc etc

It makes me feel, probably unnecessarily and wrongly, that they are accusing her of being weak, pathetic and not fighting hard enough if she doesn't make it. It's such a lot of pressure to put on someone in such a vulnerable position who has no option but to hope and pray the treatment works.Which it quite often doesn't. She has absolutely no control over this and is at the mercy of the treatment currently available. Treatment that often doesn't, and hasn't, worked for others.

I want to scream at these people to stop putting so much pressure on someone who doesn't need this right now. Even though i know they're very well intentioned and only trying to be supportive & encouraging. But she she hasn't had any training for this. She hasn't been working out and building up her physical strength to fight this enemy. She's relying entirely on hope.

GuppytheCat · 28/01/2023 21:47

Thank you for this thread. I can offer only a rather grumpy dog in a jumper.

Original poster

aloneinthenight · 28/01/2023 21:49

Plonkety · 28/01/2023 21:45

Thank you OP. This is a very insightful and helpful thread that's already helping me work out some ways of helping my sister in ways that will actuallymake a difference and matter.

I'll be honest. I'm tired of seeing the same comments from other people on her social media...
You're a fighter
Kick cancers arse
You can beat this
You're too strong
You've got this
You'll win this battle
It didn't get you last time, it won't this time
Etc etc

It makes me feel, probably unnecessarily and wrongly, that they are accusing her of being weak, pathetic and not fighting hard enough if she doesn't make it. It's such a lot of pressure to put on someone in such a vulnerable position who has no option but to hope and pray the treatment works.Which it quite often doesn't. She has absolutely no control over this and is at the mercy of the treatment currently available. Treatment that often doesn't, and hasn't, worked for others.

I want to scream at these people to stop putting so much pressure on someone who doesn't need this right now. Even though i know they're very well intentioned and only trying to be supportive & encouraging. But she she hasn't had any training for this. She hasn't been working out and building up her physical strength to fight this enemy. She's relying entirely on hope.

I can't tell you how much I hate this language. People think they're being helpful but it's really not.

If there is a battle, it's between cancer and science, the person has no power at all.

But people need to feel there is far more control than there is.

My boy didn't lose anything, and wasn't beaten.

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GHS78 · 28/01/2023 21:52

aloneinthenight · 28/01/2023 21:35

I'm so sorry and I do hope that things go well for you.

At the beginning we were told it was 'the good cancer' and we were all very positive. But nothing went right. He didn't respond to chemotherapy at all and never got into remission in induction/consolidation. He had a particularly aggressive kind.

I don't think we could have handled things any other way.

I was very insistent right from the start that I didn't want odds or statistics at any point. I had one child and I only cared about that one. My focus was always 'what is needed today' and not to think too far into the future. I don't really regret that.

And also, all the 'making memories' stuff you feel compelled to pack in.

I miss watching films together, I miss hot chocolate and pancakes. I don't miss day trips and big events.

But I wish I'd taken more photos.

Show quote history

That’s so interesting, thank you for taking the time to reply. There’s a lot that resonates in what you’ve said and a lot to think about. Days out for us have been very difficult since diagnosis due to his mood and side effects, but I feel guilty if we don’t do things. So it’s reassuring to hear that those are not something you look back on and miss.

Eyeofthestorm7 · 28/01/2023 21:53

I am so very sorry for your loss. Thank you for your openness OP and helping us to think how to be better at this ‘holding space’. I do find it hard to put my desire aside to make someone feel better somehow (and myself more comfortable) even though that’s not possible sometimes. But when I’m the one grieving it is absolutely precious when someone gives that moment to be really heard and held. I also am going to use ‘how is today’ as ‘how are you’ can feel pressured with expectation of improvement. I hope you can find the words for your DS’s headstone. Thank you

Original poster

aloneinthenight · 28/01/2023 21:53

Steroids are the work of the devil.

Vile, vile things.

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Duckingella · 28/01/2023 21:56

I'm so sorry;he sounds like a wonderful boy.I have friends who have lost children;I never expect them to be shy about talking about them around me and I love to hear about them;they are relevant;they are a part of my friends lives even though they may not be physically here.

I lost my brother as a child and I wasn't allowed to grieve for him,I wasn't allowed to talk about him through fear of upsetting my controlling abusive father.

It's scarred me deeply as a person which is why I don't ignore other people's loses.

1983Louise · 28/01/2023 21:57

I think losing a child is the biggest loss you can have. If anyone can carry on with life afterwards it certainly shows an inner strength. Wishing you nothing but love, no one should ever go through that pain xx

OrderItFromZanzibar · 28/01/2023 21:59

Thank you for creating this thread.

I don't have a question that I can think of. My sibling was diagnosed with untreatable cancer in their early 30's. I'm terrified of the future, particularly how my parents will cope when things start declining. I'm not sure I'll be strong enough to look after myself and them. I guess I do have a question...do you think there's anything that you discussed with your son that helped them mentally? I'm too scared to discuss any of it with my sibling in case it upsets them or they don't want to talk about it but likewise I'm worried they haven't discussed things with me as they want to spare MY feelings and emotions.

Original poster

aloneinthenight · 28/01/2023 22:00

Duckingella · 28/01/2023 21:56

I'm so sorry;he sounds like a wonderful boy.I have friends who have lost children;I never expect them to be shy about talking about them around me and I love to hear about them;they are relevant;they are a part of my friends lives even though they may not be physically here.

I lost my brother as a child and I wasn't allowed to grieve for him,I wasn't allowed to talk about him through fear of upsetting my controlling abusive father.

It's scarred me deeply as a person which is why I don't ignore other people's loses.

I'm so sorry about your brother - that sounds really hard.

I hope you are able to talk about him now.

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