Operation on Friday

Hi love I was actually put to sleep for my brain opp still a bit left in there as it was too deep, (grade 4) was in hospital for 12 days 13 months ago it’s a long operation and your husband will be pretty rough after the treatment so maybe quite scary for your young kids, it’s usually just 1 person going to visit at a time maybe different from each hospital mine was Sheffield, Iv been through radiotherapy and chemotherapy which has put the tumour on hold from growing back at the moment so defo a good option after his operation, if you would like to ask me anything about the opp, side effects of treatment etc that’s no problem, hope he does well love.

Hi Dave!

thank you so much for the answer! I’m glad to hear your tumour is on hold 13 months after the op! 
I would love to hear if you were allowed a visitor on the same day as the op and in what sense you were rough after the procedure? Any tips how to recover well? And yes please tell me what you wish someone had told you ahead of it all! 
thank you so much and I wish you al the best! 

Hi Bella,

Like Dave my wife's tumour was very deep so they put her under. The rules in the ICU wards do tend to be very strict so I'd imagine it might be one visitor per patient. She went into theatre at 8.30am and came out around 2. They then waited for her to pass all the neurological checks before I could see her. At that point she was on a very high dose of dexamethasone so was much more concerned with food than anything else! That was on a Friday and we picked up her up on the Sunday and she never went to a "normal" ward so our kids never saw her in hospital.

When you do pick him up one thing I wasn't really ready for was the size of the wound and the bruising in her face. It might be different for your husband as it might be less invasive. I got a bit teary when I first saw her without the bandages which wasn't really what she needed. 

Make sure your phone is charged and that wherever you decide to wait you have a decent signal. All the best!

Chris

Morning love, I was told that visitors wasn’t allowed due to covid etc I was the first operation of the day my partner dropped me off at the hospital outside the brain waiting room as it was entering straight from the car park so I went in on my own they was quite a few of us there we all had to be there for 7am and had to wait for a nurse to lead us to the operation room I was actually the first one so was around 8am when I was in the operation room getting set up with lots of nurses and surgeons had the injection that makes you relaxed had a nurse holding my hand as quite scary once set up they injected me and asleep in seconds not too sure how long the operation was… maybe 5 hours I think I was in the recovery room then they transferred me to the ward it was dark by that time I was shattered but hard for me to get to sleep due to other people doing loud snoring plus I don’t usually get headaches but mine was massive due to the operation so was having tablets etc that knock you out I was in head pain too but only so many drugs throughout the day that was given by the nurses.

the second day a wife arrived to see one of the other guys yet I was told no visitors allowed so asked the nurse and she said only one person is allowed to visit so my partner started to visit me while I was in there after she finished work but was so tired sometimes fell asleep while holding her hand visitors were only allowed to stay for 1 hour.

I just wanted the tumour removed the scans they did leading up to my operation they thought grade 2 it took a month for the results to come back to me after the tumour was part removed and was grade 4 which is the worst result ever 12-18 months to live if I had the radiotherapy then chemotherapy they always have to tell you the lowest limits but you could live for years  

the part of brain removed effects my short term memory plus I never use to cry unless I lost a family member but now I do when I think about things due to the part removed effects that too.

so I finished all my treatment in October and my sleeping pattern still messed up plus started ringing in the ear same side as the operation at 4 weeks in to the physiotherapy and that will now last forever, I’m 49 now and had a massive garden party in may just in case I didn’t make it to 50 so this year if still ok will be having another garden party, I love parties lol. All the best to you your husband and family, if they is anything else you would like to know just give me a shout.

Hey Bella,

My wife's experience (awake craniotomy) was a bit different to Dave and to Branoc's wife.  Perhaps because it was awake - perhaps because it was nearer to the surface.

If I recall, Fi went in at about 2PM (she was on standby - which was nerve-wracking in itself) and emerged at about 8PM - though I think she had been in recovery for about 45 minutes before I was notified.  I went down and saw her in recovery and stayed with her till they put her onto the neuro ward.  She had to be in her own room because pre-surgery she was given a light sensitive dye to drink (to highlight the tumour, I think) so had to be kept in a dimly lit room until she had passed it all out.  I think I stayed with her till the wee small hours to settle her to sleep and then went home.  (Though knowing her she made me stay all night - I can't remember.)

I don't think it will be ICU - just a plain old neuro ward - aftercare for surface brain surgery is not actually that complicated... your husband will need to metabolise all the sedatives, painkillers, etc.,demonstrate that he has no infections and that there is no evidence of damage or bleeding and that he has support at home and then he will be allowed out.  In Fi's case, she came out the following evening - she would not have allowed our kids in to see her anyway - but I would have thought you are better off waiting till hubby gets home. 

Awake craniotomy is quite precise because they are constantly talking to the person and can tell if they are removing something functional and just stop - so the likelihood of them doing damage is less than if someone is fully sedated.  However this all depends on where the tumour is and what other things it has affected.  I guess it is entirely possible that your husband might have to stay in for a few days.

The surgical team were lovely, the nurses were lovely - we were very well cared for throughout.

Fi recovered really well after surgery and got through her radio and chemo really well over the subsequent months.

Take a book or have some mindless movies downloaded on your phone.  Make sure you know where the cafe's are.  As others have said, make sure you sit somewhere you have phone signal.

Bless you both - big hugs... it's going to be fine.  Just one of the weirdest days of your life. :)

Pete

Hi Bella 44

I hope everything goes smoothly on Friday. As one of the others said it will be a long surreal day for you. My husband had his surgery at the height of COVID so there was zero visiting. He was able to speak briefly to me on the phone but was very tired and confused that night and the following day. He had his surgery on the Wed and was discharged home on the Friday at teatime. 

Hopefully the hospital will let you visit on Friday. I'm sure they'll let you know as soon as they can. They'll likely phone you when he's in recovery after the op. Keep your phone handy and stay in a strong signal area. My husband's op was 8.30 am and I never heard anything til mid-afternoon but everyone's surgery is different and it takes as long as it takes.

As for taking the kids to visit - maybe not the best idea the first day you see him. See him for yourself and make a judgement call from there. there's no right or wrong on that one but you want to make sure that the kids visit goes smoothly and nothing is going to distress them. Its such a lot for them to take on board. it's a lot for anyone to take on board.

Keep asking those questions that are floating around. We're all here to help answer them and remember the helpline is only a call away too.

sending love and hugs. Stay strong. You're coping so much better here than you give yourself credit for- you'll just need to trust me on that.

love n hugs

Wee Me xx

Hey Bella44...

Thinking of you both.  Hope today went OK and that you both get a decent night's sleep tonight.

Pete

Thank you Pete for thinking of us! It was indeed a very surreal and long day. The operation went really well, they took out more than they thought they could, but sadly the pre op scan showed the tumour is spreading aggressively and was now in 5 locations, and there is still quite a bit left after the op. I couldn’t see him tonight as it was too late but will see him tomorrow. I can’t believe how aggressive this b&@£tard is. So awful. He’s just turned 51 and we have 3 young kids- so sad! Thanks again for the thought, hope you’re ok? X

Hey Bella44...

Glad that the operation went well - sorry to hear the news from the scan.  I suspect that they will summon you back in a couple of weeks to have the staples taken out and to have a chat about next steps.  In Fi's case this was radio and chemo - but they might have a different plan for your husband depending on the site and what they think they can get away with.  In any case, the operation will have done a lot of good so it's good to have that done.

Yes... It's an awful disease.  Makes me angry and upset reading everyone's stories on here.  But I also know that is only half the story and that there is hope for everyone on here and that there is infinite human potential to make joy even in the midst of something negative.  And I know that because I've walked it - and you will too.

I hope you get some sleep tonight and that you have a good day tomorrow.

Pete

HI Bella44

Glad the op went well. One step at a time here. Baby steps too over the next few days. It's a huge amount for you all to process. 

For the first few days/couple of weeks, my husband seemed worse after the surgery but as he recovered from the op there was improvement so don't be disheartened if he seems worse when you see him today. Remember yesterday was a long surreal day for him too.

Love n hugs

Wee Me xx