g__day
09-08-2011, 05:28 PM
Hi ladies and gentlemen,
A note to say I survived (jaw resection, lymph removal and jaw reconstruction from my a leg bone - fibular - to treat an incredibly rare cancer found in jaw). My pathology was returned saying all clear in the removed materials! Now here comes a few month's of baby food.
It's nice to be home, very, very nice. After three weeks in hospital I was rather anxious to escape!
The saga started in late March - a wierd growth on the lower left jaw / cheek - that I thought might be a serious boil or infection. Turns out it was a tumour 10 * 10 * 20mm, which was removed surgically in an 100 minute operation in late May. However the pathology - which was checked locally by several heads of pathology and then sent to the USA for confirmation, revealed I had an exceedingly rare cancer - on that has only been documented - worldwide - around 60 times in medical history.
This took things to a whole new level as they say. The only option then is they judge how much of your jaw is affected and add 1/2 inch to this section either end and cut it all out - teeth, bone, skin, musle, nerve and all your lymph nodes. Then if you're truely unlucky they give you radiotheraphy, daily for six weeks to kill everything that exists on that side of your head. So for me that was a removal of 1-2 molars, all left side lymph glands and between 70mm - 100mm of jaw bone. The jaw is wired shut and they splice a leg open between your knee and heel and remove 80% of your entire fibular, plus artery and vein, plus muscle, plus skin grafts for the donor site. Then they re-build you. Typically the jaw removal is 4 hours and the re-build is 8 hours; for a team of 12+ doctors.
In my case the re-build was tricky, the artey and vein didn't take right the first time, and without great blood supply the jaw will die. So all up the operation was 20 hours! Started at 8am, finished midnight.
Recovery is in the critical care unit, where for 6 days they prick your jaw - every hour - to see blood supply is good and healthy. That's six days with the most broken sleep imaginable, in a unit where folk are ranting (always in foreign language), crying out in pain and alarms are going off every tem minutes or so. There are about 6 - 8 patients in the ICU. The lady on my left died on the second night. The guy on my right had an arterial fail on the fourth day - artery kinda exploded as doctor doing a check up; it was like M.A.S.H. - he lived, head doctor was really great but the 4-6 support doctors and nurses were running round uselessly saying we can't find any size 3 arterial clamps / grafts. He rather calmly said, "Well I suggest you look harder and find some" as he knelt over the guy and held his arteries closed with his bare hands. So it was rather exciting.
Sleep deprivation is pure torture. When I awoke I had ten cables and tubes attached, jaw wired shut and my only thought was I survived - now get better. Two weeks without a drink and effectively no sleep was hell. By day four I convinced the doctors to give me ice packs, which was heaven to help regulate pain, heat and being dryer that the Sahara. Day five in the evening Hell nurse arrived and wanted my ice packs to the jaw's blood supply wouldn't be compromised. An epic battle - much like the book Misery - ensued all night; truly a low point on my visit.
So day seven escaped the ICU and went to a regular ward of four where it was much easier to rest. By this stage my face surprisingly looked almost normal. The cut is almost non visible, the plastic surgeon must be amazing! I had been told they will slice you from your ear, under your throat over your chin to your lip, then lift your entire face to remove the jaw (horror). I'd say the total cut is only 3-4 inches, just below the jaw line, and as said invisible.
Day 12 wires came out and a lot of rubber bands attaches to braces mounted into the jaw itself. At least I can open my mouth a few millimeters now.
Day 13 was hell on earth. As I fell to sleep I woke coughing up saliva, this went on for a few hours. I had a suction tube so I was suctioning my mouth dry every few minute so I could breathe without drowning. Called for the doctor - several times. Eventually a nurse turned up with pain meds. I rather clearly stated I'm not in pain, I can't breathe! Anyway by 2 am they found a doctor - who didn't have their stethoscope so they left until 3am. At 3am after 5 minutes they got called away. At 4 am they returned and tried to see in my mouth - using a scapel they held in their hand as a tongue depresser. Thank got the nurses were alert and screamed what are you doing - that's a scapel in your hands! By then I kinda just put my foot down and said get a real doctor. Anyway by 6am the A team arrived, I had totally no sleep by this time and was fighting simply to breathe. He saw all was well except something was flooding the trach site in my neck and would have to be suctioned through the site - about 3 - 5 cm until all excess fluids removed. I passed out by then until about 9am and felt fine afterwards.
Day 14 - face swollen more than an inch - yes its a raging infection, they suction out 40+ ml of puss and guck and book me for emergency surgery to drain the neck and see what's wrong. I hear them hoping its not a super bug and secondly that its not an infection that gets into the metal screws holding my jaw together - if either of these things happens its very long and complex surgery to try and correct. So its another hour or so of surgery and I awake with a drain in my neck and the trachie back in for a day (oh great) - back in ICU. They tell me all fine! Next day results come back its a common infection and its below the jaw line so I'm on strong antibotics for a few weeks but all's basically really well.
Over the course of these first two weeks about every day or so they remove a line / tube. Neck fluids, IV, arterial line, cathade (wee tube), pain drip, trachie Oxygen tube. After the second operation the ICU nurse knocks out the fluid line in my veins. Calls a doctor who tries 3 time to insert a line - bloody painful and fails. Mind you the guy took three attempts to get a tournique on - so I had no confidence in him and as for a real doctor. A new male nurse tries twice and fails both times, after shaving my arm bare. He's worried I'm too dehydrated so he calls an anithest who eventually arrives and gets it on the first attempt. I make sure they put enough plaster gauze on it so this thing can't come out again.
The next week is all recovery - finding I'm able to walk a few hundred yards with only a moderate if any limp and some tiredness. Sleeping much better, although totally sick of feed tube in my nose and 3 injections of blood thinners they shoot into my legs each day - talk about bruised legs. Finally get to see the leg they removed the bone from; - its like a thin red biro line on my leg, plus a 50 * 100 mm patch where they did a skin graft and a 70 + 80 * 5mm hourglass scar below it that (it goes in maybe 5mm where they removed the bone, muscle and artery) to rebuild my jaw then applied the skin graft too so it would heal - make me want to puke when I first saw it!
Day 16 first shower - I feel like gold, but every exposed cut has to be wrapped in layer of plastic.
Day 20 back home - and I actually feel great, but tired and its exhausting to eat - well swallow / suck. Wife cooked a lamb roast - then blended all my food into baby mush. Try eating when you jaw will only open a few millimeters and you have a dozen or so rubber bands holding your jaws in position.
So really now I just have to regain muscle and recover body wieght - probably lost only 3kgs in hospital, but I thing I'll lose more until jaws free to move. Oh and I found taking out the braces - which are wired into the jaws themselves - is another minor operation in itself. All the trachie scars and neck drains should heal over in the next few days / a week or so. It's disguisting to sneeze and have to try and get fluids to exit through your nose not neck!
So that's it - pretty raw, but I'm amazed at how well its gone. Looking in the mirror now only a small part of my jaw looks swollen and their are no visible scars on my neck, jaw line looks perfect. I wanted to get my brown belt in Aikido this year (next grading) but I'll just have to slowly start building weight, balance and fitiness to get back into it - club has been really supportive and keen to see me back. I can't wait until I can eat something normally; doctors say eating a thick steak is about 90 - 100 days away for me. Being on antibiotics means a beer, wine or spirits is also about a week or two away.
But life goes on well and each day is simply a lot better that the day before it. It's all a coast from here!
Great to be back and be given the all clear after the operations,
Matthew
A note to say I survived (jaw resection, lymph removal and jaw reconstruction from my a leg bone - fibular - to treat an incredibly rare cancer found in jaw). My pathology was returned saying all clear in the removed materials! Now here comes a few month's of baby food.
It's nice to be home, very, very nice. After three weeks in hospital I was rather anxious to escape!
The saga started in late March - a wierd growth on the lower left jaw / cheek - that I thought might be a serious boil or infection. Turns out it was a tumour 10 * 10 * 20mm, which was removed surgically in an 100 minute operation in late May. However the pathology - which was checked locally by several heads of pathology and then sent to the USA for confirmation, revealed I had an exceedingly rare cancer - on that has only been documented - worldwide - around 60 times in medical history.
This took things to a whole new level as they say. The only option then is they judge how much of your jaw is affected and add 1/2 inch to this section either end and cut it all out - teeth, bone, skin, musle, nerve and all your lymph nodes. Then if you're truely unlucky they give you radiotheraphy, daily for six weeks to kill everything that exists on that side of your head. So for me that was a removal of 1-2 molars, all left side lymph glands and between 70mm - 100mm of jaw bone. The jaw is wired shut and they splice a leg open between your knee and heel and remove 80% of your entire fibular, plus artery and vein, plus muscle, plus skin grafts for the donor site. Then they re-build you. Typically the jaw removal is 4 hours and the re-build is 8 hours; for a team of 12+ doctors.
In my case the re-build was tricky, the artey and vein didn't take right the first time, and without great blood supply the jaw will die. So all up the operation was 20 hours! Started at 8am, finished midnight.
Recovery is in the critical care unit, where for 6 days they prick your jaw - every hour - to see blood supply is good and healthy. That's six days with the most broken sleep imaginable, in a unit where folk are ranting (always in foreign language), crying out in pain and alarms are going off every tem minutes or so. There are about 6 - 8 patients in the ICU. The lady on my left died on the second night. The guy on my right had an arterial fail on the fourth day - artery kinda exploded as doctor doing a check up; it was like M.A.S.H. - he lived, head doctor was really great but the 4-6 support doctors and nurses were running round uselessly saying we can't find any size 3 arterial clamps / grafts. He rather calmly said, "Well I suggest you look harder and find some" as he knelt over the guy and held his arteries closed with his bare hands. So it was rather exciting.
Sleep deprivation is pure torture. When I awoke I had ten cables and tubes attached, jaw wired shut and my only thought was I survived - now get better. Two weeks without a drink and effectively no sleep was hell. By day four I convinced the doctors to give me ice packs, which was heaven to help regulate pain, heat and being dryer that the Sahara. Day five in the evening Hell nurse arrived and wanted my ice packs to the jaw's blood supply wouldn't be compromised. An epic battle - much like the book Misery - ensued all night; truly a low point on my visit.
So day seven escaped the ICU and went to a regular ward of four where it was much easier to rest. By this stage my face surprisingly looked almost normal. The cut is almost non visible, the plastic surgeon must be amazing! I had been told they will slice you from your ear, under your throat over your chin to your lip, then lift your entire face to remove the jaw (horror). I'd say the total cut is only 3-4 inches, just below the jaw line, and as said invisible.
Day 12 wires came out and a lot of rubber bands attaches to braces mounted into the jaw itself. At least I can open my mouth a few millimeters now.
Day 13 was hell on earth. As I fell to sleep I woke coughing up saliva, this went on for a few hours. I had a suction tube so I was suctioning my mouth dry every few minute so I could breathe without drowning. Called for the doctor - several times. Eventually a nurse turned up with pain meds. I rather clearly stated I'm not in pain, I can't breathe! Anyway by 2 am they found a doctor - who didn't have their stethoscope so they left until 3am. At 3am after 5 minutes they got called away. At 4 am they returned and tried to see in my mouth - using a scapel they held in their hand as a tongue depresser. Thank got the nurses were alert and screamed what are you doing - that's a scapel in your hands! By then I kinda just put my foot down and said get a real doctor. Anyway by 6am the A team arrived, I had totally no sleep by this time and was fighting simply to breathe. He saw all was well except something was flooding the trach site in my neck and would have to be suctioned through the site - about 3 - 5 cm until all excess fluids removed. I passed out by then until about 9am and felt fine afterwards.
Day 14 - face swollen more than an inch - yes its a raging infection, they suction out 40+ ml of puss and guck and book me for emergency surgery to drain the neck and see what's wrong. I hear them hoping its not a super bug and secondly that its not an infection that gets into the metal screws holding my jaw together - if either of these things happens its very long and complex surgery to try and correct. So its another hour or so of surgery and I awake with a drain in my neck and the trachie back in for a day (oh great) - back in ICU. They tell me all fine! Next day results come back its a common infection and its below the jaw line so I'm on strong antibotics for a few weeks but all's basically really well.
Over the course of these first two weeks about every day or so they remove a line / tube. Neck fluids, IV, arterial line, cathade (wee tube), pain drip, trachie Oxygen tube. After the second operation the ICU nurse knocks out the fluid line in my veins. Calls a doctor who tries 3 time to insert a line - bloody painful and fails. Mind you the guy took three attempts to get a tournique on - so I had no confidence in him and as for a real doctor. A new male nurse tries twice and fails both times, after shaving my arm bare. He's worried I'm too dehydrated so he calls an anithest who eventually arrives and gets it on the first attempt. I make sure they put enough plaster gauze on it so this thing can't come out again.
The next week is all recovery - finding I'm able to walk a few hundred yards with only a moderate if any limp and some tiredness. Sleeping much better, although totally sick of feed tube in my nose and 3 injections of blood thinners they shoot into my legs each day - talk about bruised legs. Finally get to see the leg they removed the bone from; - its like a thin red biro line on my leg, plus a 50 * 100 mm patch where they did a skin graft and a 70 + 80 * 5mm hourglass scar below it that (it goes in maybe 5mm where they removed the bone, muscle and artery) to rebuild my jaw then applied the skin graft too so it would heal - make me want to puke when I first saw it!
Day 16 first shower - I feel like gold, but every exposed cut has to be wrapped in layer of plastic.
Day 20 back home - and I actually feel great, but tired and its exhausting to eat - well swallow / suck. Wife cooked a lamb roast - then blended all my food into baby mush. Try eating when you jaw will only open a few millimeters and you have a dozen or so rubber bands holding your jaws in position.
So really now I just have to regain muscle and recover body wieght - probably lost only 3kgs in hospital, but I thing I'll lose more until jaws free to move. Oh and I found taking out the braces - which are wired into the jaws themselves - is another minor operation in itself. All the trachie scars and neck drains should heal over in the next few days / a week or so. It's disguisting to sneeze and have to try and get fluids to exit through your nose not neck!
So that's it - pretty raw, but I'm amazed at how well its gone. Looking in the mirror now only a small part of my jaw looks swollen and their are no visible scars on my neck, jaw line looks perfect. I wanted to get my brown belt in Aikido this year (next grading) but I'll just have to slowly start building weight, balance and fitiness to get back into it - club has been really supportive and keen to see me back. I can't wait until I can eat something normally; doctors say eating a thick steak is about 90 - 100 days away for me. Being on antibiotics means a beer, wine or spirits is also about a week or two away.
But life goes on well and each day is simply a lot better that the day before it. It's all a coast from here!
Great to be back and be given the all clear after the operations,
Matthew