Brian
Brian made a post on our cancer support forum that he intends to post to his blog on his condition having oral surgery this past week. I’m going to re-post the story here since I believe it has some good information related to how similar our cancers are. I’m sure he will get this info up on his blog soon but due to network issues in the hospital it will have to wait I’m guessing until he is released.
Here is his post:
I had intended to post this to my blog so everyone could get an update but the mad hotspot here won’t let me log in so hope you don’t mind if I have you a quick update here..I’m still around…battered and sore but felling better by the hour.
here’s my blog post, I’ll put it in when I have proper email and internet acces.
Day 1
Well actually its day 5, the 1st time I’ve felt well enough and mobile enough to haul out the laptop..sadly no wifi connection in the room, but there is a pay network hotspot way down in the hospital reception… I left my wallet at home with my cards, so will have to get Bina to bring it in I’ll try to make a posting today..Mum’s here though so I dunno why the rest of you will be reading this 
Seems wrong to start off with today, and not give you a timetable of events but tbh the last few days are a bit of a jumble so best I just explain the best I can remember. I do really feel a lot better today, over the last few days 1 by 1, I’ve had drips drains and catheters removed and as I type this I just have one drain left which will be removed soon.
So…what was it like? Painful of course, incredibly sore, despite the numbing of half my face due to the nerves being tickled and prodded, I still have all my facial nerves intact and they are starting to reconnect at different rates usually preceded with pain. My tongue is half numb still so speaking is a bit slurred but have been told that will resolve itself soon
I have no idea what’s going on in my mouth because the numb side is of course the side where the work was done, but it feels a bit like a big swollen mass at the moment, we’ll have to wait a few more days till the swelling does down to get a better idea.
The surgeon is a bit confused by the pain tbh. Everything above the wound is fairly numb and not too bad, but a few inches below is very raw and swollen.(well everything is but swollen and painful below the wound)
The actual surgery took 5 hours I’m told, and it was quite a surreal experience. Unlike in the UK where you go in, settle down for a few hours, get a pre med, have a quick visit with a surgeon, then get taken down to the anaesthetist. Here we booked in…were shown the room where I would be spending the next 6 or 7 days and basically left to it. About an hour before hand they dropped off some very fetching paper pants and a poppit fastening gown, and gave me a file to take down to the surgeon to discuss what he was going to do.
That was fine, he re-stated pretty much everything he mentioned before and we asked a few more questions about healing rates and so on.
Back to the room…and then told it was set for 12-45 and to get into my paper pants 15 mins before…oh and go to the toilet 1st.
Gulp
Bina stayed with me till they wheeled me out of the room..still no pre-med, and I was wheeled straight down to the actual theatre where of course in typical Dutch fashion everyone introduced themselves…..odd..
I then shuffled onto the op table, fitting my head into a head rest, this was hard and uncomfortable but kept my head nice and still….still no pre-med.
Then they started fitting me with IV’s and strapping me in while still awake….finally the white stuff was pumped in and I was out cold….
5 hours later…
Recovery was awful….since I had swallowed a couple of bucket loads of blood I was very nauseous and they could not give me enough morphine to do the job because that increases the nausea…of course the numb face at least meant I was not screaming the house down.
I’ve never been happier to see Bina and Jodie at that point, unable to say much, in incredible pain and trying hard to breath as my mouth was full of bloody and sticky choking mucus. I grabbed their hands as they stood either side of me and felt immediately better. Both of them wearing sterile hat and gown, which really made Jodies bum look huge???
Things get a bit vague at that point, thoughts are very muddled and I was in distress a few times as I struggled to breath/avoid throwing up,
But eventually things must have stabilised, the surgeon came to see me and wanted to see me doing kiss and smile moves…not too successfully; then they wheeled me back up to the room, where in a few moments of lucidity I worked out that I had all my tubes and drains in place. 2 in the neck, an IV in my wrist and foot , a couple of nasal tubes, which I didn’t understand at 1st, 1 was Oxygen, the other was feeding.
I wasn’t able to wash out my mouth so the thick congealed blood coating my mouth and tongue was stopping any fresh saliva from being produced. The gave me a damp cloth though which I put in my mouth and rubbed my tongue as hard as possible to get it clean…it came out black with congealed blood and took several goes to get something close to clear.
That was the 1st couple of days basically, swallowing was agony, and breathing occasionally become difficult as the thick goo in my mouth would choke me with no easy way to cough and swallow the accumulated and very very sticky gunk
Sleep didn’t come easily and the next 48 hours or so were spent watching the worlds slowest clock on the wall tick seconds away as I tried in vein to find some way to be comfortable on what is supposed to be a state of the art hospital bed (bed goes up bed goes down). I simply couldn’t get cosy. Desperate for sleep and on only mild painkillers there was just no way to drop off and I existed on snatched 5 min naps before waking with a start trying to clear my throat and breath.
Anyway…A nice opiate based injection in the leg one morning gave me 2 hours of blissful painfree sleep (and some very vivid coloured dreams) and I started to feel better.
I got a 1st look at my face which is not a pretty sight at the best of times, and wow….massive angry looking scar with around 30 staples and a huge amount of swelling in the jaw area. At one point the cling film substance they put over the wound to keep everything in place was starting to choke me as my face swelled and swelled pulling it tight across my throat.
All this is normal of course, 4-5 days of swelling are expected and it should start to die down after the weekend.
Mum turned up on Thursday night, she had this trip planned long before the cancer diagnosis so we all agreed she should still come over and we’ll see how things go, but it was clear when she saw me she was a bit shocked at the state of my swollen face. But after a few mins of chatting she was ok.
I’m talking, albeit with some difficulty as my tongue is still numb on one side and I don’t have full lip control but I am at least understandable, so when mum whipped out a video camera to take in the scene I couldn’t resist spouting as many filthy expletives as I was able….something for her to remember ?
I can’t really listen to my ipod either as my right ear is totally numb and it feels too freekingly odd to put an ear piece in. So mostly I am watching TV in the room…one of the benefits of being a solo occupant.
1 by 1 my various tubes have come out…I asked them keep the catheter in for a few days longer than they planned, part from honest fear but also because for the 1st few days I was weak as a kitten and tired in seconds..I mean that, even a few seconds worth of lucid movement resulted in a need for a 2 hour lie down (no sleep though due to the discomfort), so best to let the bag take the effort and avoid pissing the bed.
The feeding tube somehow got pulled out of position while I was asleep and ended up pumping complan type stuff into my chest. The nurse removed it , revealing the bottom 2 inches or so had been sitting in blood, with the intention of putting a new one in, but I just couldn’t cope with the re-insert so I was allowed to leave it off. So I might lose a few pounds in weight….big deal.
Oh they said the catheter does not hurt when they remove it…that’s a lie….well kinda its not so much pain as…..as……deeply unpleasant. I was peeing again normally a few hours later. Never been so happy to have a stand up pee before.
Eating was possible yesterday but frankly just too painful, so I only managed a couple of small spoonfuls of yogurt. Today is much better, swallowing still hurts but not as much and I managed a full yogurt breakfast and a soup and yogurt lunch. The inside of my mouth is swelling up quite a bit today though and I can’t quite close my mouth without effort, so I don’t expect to be chewing for a few more days
So everyday, I’m getting a bit better, I can get up and move about now for longer than a few seconds before needing a lie down. So far about 20 mins…setting up this laptop and typing a page wiped me out for a couple of hours though.
My right arm is starting to get a bit weak, as I was warned, due to the shoulder nerves in my neck, being moved around. No pain (yet) just a feeling of weakness that will get worse then get better.
Bina has taken pics of me in various states, pretty much every day, with a fuck you cancer theme to them, which should become apparent when I post them.
I am able to pull my emails on my phone, though annoyingly I’ve never worked out how to send messages, and the emails of support are really inspiring. Thank you all for the kind wishes and words of support.
So that’s round 2 over…I seem to have won that, the section of jaw removed, along with 3 teeth had the cancer contained, I keep my facial nerves intact and the lymph glands all “appeared” to be clear and healthy. The pathology takes 2 weeks so we’ll know then if we’ve dealt it a knock out blow!
That’s it….never realised typing could be so tiring…am going to go have a 2 hour lie down then watch Dr Who (I at least get BBC tv here).. I’ll post this as soon as I am able but it might not be till I get out and am back home.
