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.

So sorry to hear your son is going through all this. I used to work within the university sector, and unfortunatly this is not uncommon. While they should be able to manage it themselves usually, reach out to the Students Union Activities or Wellbeing team (ideally the manager). All societies have to agree to a code of conduct within themselves and the union ( usually linked to behaviour, attitude , teamwork) to gain funding / assess / room space , and it sounds this this individual has gone too far. If you reach out to them , highlight your sons current situation and what is currently happening and can they step in, they should be able to support asap - this things happens more than you think, and if they know they usually step in very quickly. Good luck.

Get him to contact student union when he feels upto it , there should be some form of student conduct for the societies , hopefully he’s also got support from student services for his wellbeing as well.

He's ok and has support. As I understand it these groups and socs are not official ones. They have multiple insta and WhatsApp chats.

I'm glad your son has had his operation. Fingers crossed he has a steady recovery. I'm sorry he has this added stress. I hope he can put it to the back of his mind. My son is 4 weeks post operation. We've had a few ups and down but it's amazing how the brain recovers.

Great to know and I wish your son the best recovery 💕

How did you find the anti seizure meds? I think they are making my son a bit emotional, anxious, angry.

They make him very tired and bit forgetful. They've just been increased as he's not had a good week and think he's been having small seizures. Apparently the seizures can happen after the operation as the brain has been through trauma. I get him to take B6 tablets as I read that in America it is regularly taken to balance out mood etc.

Thank you, we have a liaison nurse. I will ask advice as there's no mention of post op seizure in any info we have.

All the best for your son 💕

So glad to read the op went well @MumtoDS!!

As for the uni drama, some people are just playground bullies and never manage to grow up.

Your DS doesn't need that shit right now. Fingers crossed it doesn't aet him backwards.

DS just showed me screenshots of the group chat he's no longer on. It's unbelievable 😡 in the shots DS says he doesn't want involvement in conflict citing post op recovery needs and impact on mental health and one complete ar --says DS has 'victim syndrome'

Good mate suggests he come off Insta completely for a short time. Some lovely support texts from proper mates

Your poor DS op, Glad he’s home and recovering.

I have no words for those causing him so much extra stress (and you) . I’d be going nuclear at this point and I’m not one to get involved in my adult children’s lives too much but it’s appalling behaviour. Glad his real friends are stepping up.

Absolutely disgraceful. They should be ashamed of themselves.

Unfortunately the sheer barbaric nature if narcissists no longer surprises me.

Glad he has a good bu ch rallying round though.

I've only just seen your thread & read it all. I'm sorry I wasn't able to offer a hug & handhold in the early days. But they're here if you need them now 🤗 🤚🏼

thank god the surgery went so well 💕

it's great he has such good actual friends.

the University twat needs putting in his place. The Student Union should still be able to help if it's an unofficial group.

However, stepping away from it all might be for the best. He can reconnect with some of the others when he's up to it.

concentrate his energy on getting well & the real people in his life. Brain surgery at 20 is one way to learn to focus on what's important in life.

not utter cunts who get their egos stroked by doing shit like this. He's a disgusting little nobody that DS shouldn't waste his time on.

🤗💕

I’d suggest getting the SU and any pastoral team at uni involved with the society chat situation. Regardless of whether it’s an ‘official’ society or not, this behaviour really doesn’t reflect well on the university and I imagine they’ll want to have words.

It takes a special kind of person to pick on someone recovering from brain surgery. Best wishes to your son xx

Sending u a handhold and virtual hug.

How apalling that your son is suffering at the hands of a student society. May I suggest that you find out who the Head of student support and welfare is. It will likely be on the university student portal or website, or switchboard should be able to tell you. Explain to them by email what is happening and include the screenshots. I promise you it will be taken seriously and will contravene the code of condict for students.

I'm so glad the operation went well - how scary for all of you. It must be a massive relief now.

It's hard to believe that people like that roam the world, isn't it? I do think he should take it further or allow you to do that on his behalf. Where your son might feel he can cope with it, that kind of bullying might not be tolerable for someone else and could cause depression and low self worth. That person needs to be held accountable for their actions.

Oh the other hand, how lucky you are to have a lovely son - imagine having a child who behaves like that? I'd be so ashamed.

Hi OP, I have only just seen this thread, I’m so glad your son made it through his procedure ok.

My friend had a very similar experience: had a random seizure in her mid-20’s and a scan found a tumour. She had to undergo radiotherapy treatment alongside her awake craniotomy to remove the tumour, which she had done about 5/6 years ago now. Since the surgery she has had about four or five convulsive seizures but thankfully it hasn’t been due to a tumour recurrence, just an unfortunate complication of having had the initial tumour and the surgery (she still takes anti-convulsant medication). Since the surgery she has gone on to get married and have a child and she works full time in the NHS so life is going well for her and apart from the very infrequent times she has her seizures she is doing really, really well.

I’m sorry your son is having to deal with all the crap with the Uni and his social media groups, it’s the last thing he needs I’m sure! I wish him a gentle recovery x

He's doing well today. Getting more sleep and feeling less anxiety 🤞 Online bullsh--t should not happen, dealing with it after the trauma of brain surgery is difficult.

Sending thoughts and love. How lovely to hear that he has supportive friends like that.

Oh gosh, sorry OP - I wrote that ^ after reading your first few posts and I hadn't realised they were from a while ago. Have seen your updates now. I hope the original supportive friends are still bringing him love, and that you are all feeling supported and that things improve soon. x

I’m glad your son has had his surgery and is recovering well. My best friend has a tumour also. She was 30 when she was diagnosed. It’s an astrocytoma, a type of low grade glioma. She had surgery which went well but was very tired following surgery. The levetiracetam is a hard drug to manage too as it does increase emotions and cause fatigue.
Shes about 4.5 post surgery now, working and doing well. There was a recurrence of her seizures and also her tumour about a year ago and she was put on vorasedinib. This is a new drug only licenced on the nhs for a few weeks. But significantly helps those with low grade gliomas. It has halted the regrowth of her tumour and she can carry on as she was.
Hopefully your son will be offered it if he has this type of tumour

Glad the surgery went well.

However this stupid callous message shows exactly what type of people run these groups.

they need to be front and centre and they feel threatened by your ds being unwell and getting attention.

Sad little fuck wits they are but glad to hear your ds had some proper friends by his side.

Poor DS and the online drama. From experience the shock of it all will really hit you once hes home safe. So brace for it and take it easy for a while.

He is home now and he's reached the tired stage