DS has tumour, here for a handhold

[MumtoDS]

Just here for a handhold, not wanting any scary insights right now.

DS - young adult - had a seizure earlier this week and the cause turns out to be a brain lesion/tumour. He stabilised very quickly and even before given the steroids. Surgery has been scheduled for about 5 weeks time. He has some regular meds to take, there will be preparatory appointments to attend and advice is to carry on with life with a few lifestyle adjustments like no alcohol, no driving, good sleep schedule.

DH and I in shock, DS also obvs. DH and I have gone into our coping modes. Mine is trying to be organised and practical. This can mean I act a bit detached, but more that I just don't think beyond the next step/arrangement and my reassurance responses are automatic not addressing detail if I can help it.

DS has lovely friends who have rallied round him super quick. A beautifully effusive card just arrived. All of them are just amazing young people.

We are telling close family and friends. This is fine, but with certain friends it's a bit difficult. My closest female friend is epileptic and I knew she'd share her story again. I fully understand why, but it was the wrong time for me to hear it, if that makes sense. My closest male friend used to be a paramedic and is very good at knowing what to say, so very grateful for this.

I name changed for this because I just want a handhold. I'm not even sure why an anonymous hug is important, but feel it is.

@MumtoDS Very sorry to hear about DS. Good to hear though that he has lovely supportive friends.

Sending support, it's ok to take each day as it comes and to share or not share, whatever you need.

And in case it helps I have two good friends who had brain tumours in their twenties and years later are very much thriving.

Yes, that does help as DS is 20s and they said 'very young' for this. Although, the same night there was a young woman there not much older in similar position

Not a bad day. DS continues well. DH told his siblings. They were fab, as expected. Nice messages are great but emotionally tiring and I'm flagging at this point.I confided in a friend that was my Dad's neighbour. She's a medic, it really helped.

I could have written your original post word for word as that was me and my son 5 years ago. He was 18 and is happy and healthy now. I too coped by being practical and getting through the next steps. It is one of my regrets that I was not more emotionally available to my son at the time but I don’t think he noticed or needed that from me, just something I wish I’d done differently. At the time I had to keep my emotions tightly bottled up or I was worried I’d go to pieces. My son had seizures also which is how the tumour was found. He’s seizure free now and recovered smoothly and is happy and healthy. He does have a big scar but his hair and caps mostly hide it and he doesn’t mind if people ask. I wish you all the best for you and your boy.

Thank you, this helps a lot. DS is 20, so pretty similar.

We are very fortunate to have great family and friends. His friends continue to be amazing. The medic one is maybe a bit too emotional. Probs more their friendship than his medical knowledge.

My friend had a tunour out a couple of years ago and life is fine and normal for her now !

The phone calls to set up pre op appointments have started. DS was in the middle of uni coursework. His reaction to fear seems to be grumpy ness. Almost comes across as doesn't want to do something. Not his usual manner at all.

Made me very anxious, just have to keep saying 'this is not about me'.

But we've got through today and grumpiness only lasts a short time.

He did a lot of uni work and making pre op arrangements stuff too.

Now we are laughing at Mum's silly programme - MAFSAU

Thinking of you all, a very worrying time. I can assure you from first hand experience that they can be completely benign, my uncles was removed 37 years ago and never recurred (he’s over 80 now.) unfortunately other people are not so fortunate

My son is 27 and he has his operation to remove his brain tumour on Friday. Like you we won't know the type of tumour until it is removed. We have been through a whole range of emotions and think it will get worse over next couple of days. He is on keppra now to stop the seizures. This makes him tired and a bit forgetful. Wishing you all the best.

Hope all goes well for you and your DS. Our emotions are all over the place. DS is on Levetiracetam, he doesn't seem very tired now that it's a week since the A&E admission.

I met up with a friend whose son had surgery in 2023 and has a shunt. It was interesting to hear they were also under the London hospitals team, which I hadn't realised. Whilst the circs were a bit different to ours it was good to hear positive feedback

Coming on to update. We have 2 possible op dates. DS has completed and submitted uni coursework. 3 pre op appointments done and 3 more booked. We carry on as normal. I'm wfh for the moment because I find it easier to avoid over sharing in person. Awake surgery is a strong possibility. I find saying this very difficult but was reassured by the leaflet. DS and DH likewise.

This happened to a friend's son in his early 20s. It was very scary but the tumour was removed and he is totally fine now. He had some counselling afterwards x

It's good you have the possible op dates. My DS had his operation. He is doing well considering what he's been through. Preliminary results show the tumour as low grade and they got it all out. He will have another MRI in 3 months. If you want any more information please contact me. Best of luck ❤️

Thanks for replies, it's very helpful to hear from those in similar positions. DS has a therapist because he struggled a lot with emotions having lost an uncle and 3 remaining grandparents in a short space if time. She's fab and gives him a place to talk outside family grief.

Sending monumentally huge hugs @MumtoDS. It is a scary time, just take things a day at a time, even an hour or a minute.

Be kind to yourself, processing and coping is not being detached, it is simply doing what you need to get by without falling apart!

Good luck for your son's surgery, will keep everything crossed for the most positive of outcomes for you all ❤

One of my best friends had a tumour in 2024. Small, benign, just above ear (but his was on the right hand side). Totally successful removal and while he still had to have physio for a long time (the tumour affected his balance and gave him tinnitus even though it was tiny), he is doing very well now. Rollercoaster of emotions for us all.
I wish you and your family all the best.

Hello, all you kind and supportive Mumsnetters. Here for an update.

Surgery is next week. DS has completed his uni year - coursework and exams. Huge bravery and resilience beyond anything reasonable. Loads of preparatory scans, mapping, IQ and psychology, opthalmology, speech therapist consultation, pre op etc. He remains well and will have awake craniotomy.

I will try to keep everyone in the loop here, but be forgiving if not. But for now any words of wisdom and encouragement from you would be fab.

All thoughts with you. Hope everything goes really well.

Hopefully others will be along with wiser words but I just want you to know I am rooting for DS and thinking of you

Thank you 💕💕

Thank you 💕💕

Sending much love and a handhold. I’m praying that everything goes well next week and your DS has a really good outcome from the surgery. 🌻

Thank you 💕💕