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.

Yes, lots of good wishes for calm, positivity and a sense that things are getting done x

Just fyi…they may give him some medicines (benzodiazapenes) during the op that wont put him to sleep but will make him not bothered about what he hears/feels etc. its weird stuff. So he might be able to talk about it afterwards but in a very detached way..which is strange to hear as a relative, unless you understand the drugs. Sending big hugs for you all

Thank you. 💕

That's very helpful, thank you x

I think that's in the literature and will have been discussed with the speech therapist who is in op with him

Gosh I didn't realise they did craniotomies awake! What a scary thing to be facing. Hopefully all goes well and it is benign OP x

Hello - I'd like to join the "club" if I may. Son in law had a seizure last weekend, completely out of the blue, MRI shows tumour in left side of brain but thankfully full body scan is clear. DD is 6 mths pregnant with a slightly complicated first pregnancy and this news has been really hard to deal with. Waiting to hear from neurologists re next step / treatment plan. May need a virtual hug at some point but sending my good wishes to anyone out there facing such horrible situations.

Sending love to you all 💕

This is quite similar to where we were 4 weeks + ago. In many ways it still feels unreal. Focus on taking it step by step, it's hard to be strong but you will find it.

🙏 and 💕

Time for a big update.

DS had surgery yesterday. We arrived at the hospital at 7am. He texted he was 'going through' at 7:50. By 3pm we'd walked Brick Lane and drunk coffee until our early start was a distant memory and we were in the hotel waiting for a call. At 3:30 the surgeon called. She was very pleased with how the op went
and described DS as an excellent awake surgery patient. Said we should expect a call from the ward after 5, saying we could visit. DS himself texted at 4:30 to hello and please bring charger and pjs.

He was quite tired yesterday and a bit grumpy. Didn't like that the socks and 'headband' (bandage) made him look like he was in rehearsals for musical theatre 🤣 Today he's sitting in a chair, still not keen on the outfit, eating apple crumble and receiving visits from us and his uni friends. The hospital team are very happy with his progress and once he's had various tests they can discharge. Probably tomorrow.

At the moment we are still waiting for confirmation of any changes, permanent or temporary. But the surgeon was optimistic ahead of the tests and he doesn't seem to have any memory or cognitive difficulty as events past and present have been discussed in conversation.

Thanks to you all for being there x

Sending positive energy your way to your family

That’s an excellent update @MumtoDS . What an absolute trooper your DS is.

What a great update! Well done to your son and to his family and friends for of course being there for him in every which way.

Such a positive update . I love that he was able to text you himself asking for his charger 😊. Wishing you all the very best.

Ah OP. Sending lots of love. "Excellent awake patient" did make me chuckle. Speedy recovery vibes and lots of handheld x

Sorry my tales sparse in detail
lad I used to work with a tumour operated on all fine and that was years ago

Oh, that is a good update. Best wishes to him.

What an excellent update. Sending best wishes and hope for eveyrhting to stay on a positive trajectory.

My friend’s 19yo son had a brain tumour that was in a position challenging to operate. It took 11 hours, it was benign thank g-d, and he is making a slow recovery at home but will ultimately be fine. Thinking of you x

Hope he continues well. DS is 20 and his surgery took 5 hours. We were told it was rare to have a tumour at his age, although there seem to be quite a few similarly aged teens and twenties Mumsnetters know about.

Prior to surgery, I wasn't reading research or info very much. I had thought 3cm was small, but now know that's medium sized. Larger than either of the 2 recent celeb brain tumour patients, Davina Macall and Miles Jupp. The latter had same place tumour as DS. I don't think either had awake surgery.

A bit of an update and some woe.

DS continues well health wise, resting up at home having been discharged 2 days after surgery. Friday was a long day of tests and assessments before discharge. There was OT/physio, speech, vision etc. An MRI scan confirmed that all of the tumour has been removed. It's 🤞🤞🤞🙏 for the pathology, but it looking encouraging so far.

Unfortunately, the dreaded curse that is social media is making an intrusion into DS's recovery. He had numerous visitors during his hospital stay, which was lovely. Unfortunately, there was simultaneously a recurrence of a disagreement centring on a power play within a uni soc group chat. The admin person accused DS and a couple of other people of 'plotting'. It's all completely ridiculous, DS replied to this allegation by saying it's untrue and could they also remember he's just had brain surgery and really not in the zone to have been 'plotting' anything over the last 5 weeks. So the admin took him out of the group chat. Poor DS is disproportionately upset by this because his meds do increase anxiety and he's just had major surgery. We really don't need this now 😢

It's getting worse, the guy has removed DS from 2 committees

I’m so sorry to read this. My friends son had a brain tumour in his early teens. It was successfully operated on and he’s now fully recovered, high achieving 18 year old. It is a huge worry but the outcome really can be positive.

This pressure isn't good for his mental health and post op recovery. I don't get why social media and group chats get so toxic

How can he do that?

The guy who is the person in charge is the founder of the socs just took him off committee and the group chats.

That's outrageous. Your poor DS. Honestly what is that person thinking?
Sending you a massive hug. I read your thread when you started it so I've just been gobbling up all the updates and it all sounds very optimistic and I'm delighted he's got through the surgery so well. 💐

I don't know what to suggest about the group thing. Maybe best ignored if DS can see his way to seeing how irrelevant and out of line this person is.