Hello all. Sorry for the delay in writing. The operation was a bit like being run over by a truck. Needed some rest for a while. Thanks to everyone who has sent good wishes.
I write this on the evening of my first day back at work, just under four months after the operation. The tumour was completely removed and was confirmed as benign. I am mostly healed up, still having physiotherapy on my sore neck and shoulder. Still recovering!
Going back to work will require some adjustment I think. On the one hand I still have all the knowledge and experience I had before. On the other, it's a bit scary. Weird.
Have been back at choir now for a couple of weeks. Even went on tour to Kiev (Ukraine, before you ask). That was a bit of a baptism of fire, but I made it. Proud to have done so, and not to have missed a tour yet. Everyone in the choir has been very kind and I appreciate it very much. They are a most excellent bunch. Talented too. Some truly extraordinary performances in Kiev. Elgar's "The Dream of Gerontius" at the Barbican next week looks set to be a corker.
Saw my physio today, Jean, South African lady. She's fab. She announced today that my neck is sufficiently good now to do some proper exercises. Up until now it's been too sore and stiff to do more than massage and manipulate it a lot and stretch it a bit. Some of the floor exercises today were quite tough and I suspect she noticed that I am clearly a stranger to exercise.
My spine st the base of the skull is stable, which is good. The pain, stiffness and such is all in the soft tissues (muscles), and so can be sorted out. Lots of work must ensue to build the neck muscles up. Of course, a couple of pieces of bone have been removed from the spine at the back of my neck (C1 & C2 Laminectomy), so it won't ever be quite as tough as it was. Contact sports are now out, so I'll have to kiss goodbye to my Rugby career. Likewise the Judo. Ho hum. I asked Jean about Bungee-Jumping. Sharp response - NO-ONE should EVER Bungee-jump. If you don't have a neck problem beforehand, you will afterwards. And then there are the cruciate ligaments in your knees...so you have been warned, people, don't do it!
Monday 13 June 2011
Sunday 20 February 2011
Life Goes On - Day 3, Sunday, 20th Feb 2011
Light dawns. Some sleep had been had. A vaguely acceptable day ensues, mainly thanks to the head nurse, Neil, who is a top bloke. I am sure to scrub up and put on a good show of eating and drinking, walking about etc. to convince him that I should be the next one to get out into an ordinary ward (where they have showers, and proper toilets instead of commodes, no catheters in, no monitoring etc)
4:30pm I am out! Naff hospital pyjamas but better than a gown and catheter. Now the process of recovery can really begin.
I am reunited with all my possessions, including this 'phone....
...and at some point soon I suppose I will let you all in to visit. There will be good days and bad days. Even if I had a very very bad time on Saturday, and even if I do nothing else today, I've already done very well today as it is. That's enough. Just need to take it one day at a time. My momma always said so anyways. And today is after all only Day 3...
4:30pm I am out! Naff hospital pyjamas but better than a gown and catheter. Now the process of recovery can really begin.
I am reunited with all my possessions, including this 'phone....
...and at some point soon I suppose I will let you all in to visit. There will be good days and bad days. Even if I had a very very bad time on Saturday, and even if I do nothing else today, I've already done very well today as it is. That's enough. Just need to take it one day at a time. My momma always said so anyways. And today is after all only Day 3...
Life Goes On - Day 2, Saturday, 19th Feb 2011
Indescribable. Spend entire day in a sweat trying to find a way to rest my head and neck. My parents and brother Paul visit. I shock and scare them.
Expect the night to be the same as before. To my surprise the looneys behave and I manage to get a little sleep here and there. Everything is very surreal
Expect the night to be the same as before. To my surprise the looneys behave and I manage to get a little sleep here and there. Everything is very surreal
Life Goes On - Day 1, Friday, 18th Feb 2011
It lives! (that's me). It has been exterminated! (the tumour).
Wake up in recovery at about midnight. Wasn't even aware of going to sleep. Nice chap explains that the op was a big success. I'm not with it.
Sometime later, moved to ICU. In a bed on my back. Neck totally stiff. Head enclosed in something. Rough night, all manner of mayhem going on. Still busy in the daytime too. One of those chaps playing at nurses looks after me. Good bloke, Ed, bit of a no-nonsense matronly attitude that I don't care for though. Doesn't he realise what I've been through?
My brother visits, along with Louise and Caroline. Great of them all but I am far, far from my best. I try to get a message out that I am not ready but it fails to stop Declan. I fear he found it all most upsetting. I know I did.
I feel better while John is there and I get into a chair while we plot the no visitors message. I eat and drink on cue like a Trojan to demonstrate how well I am. Darker later. Much.
Good news! That night I am moved to the High-Dependency Unit. It's not good news at all. Extremely black night. Looneys in the unit, and then there are the patients. No sleep, can't put head down because of neck. They want to take observations all the time round the clock.
Wake up in recovery at about midnight. Wasn't even aware of going to sleep. Nice chap explains that the op was a big success. I'm not with it.
Sometime later, moved to ICU. In a bed on my back. Neck totally stiff. Head enclosed in something. Rough night, all manner of mayhem going on. Still busy in the daytime too. One of those chaps playing at nurses looks after me. Good bloke, Ed, bit of a no-nonsense matronly attitude that I don't care for though. Doesn't he realise what I've been through?
My brother visits, along with Louise and Caroline. Great of them all but I am far, far from my best. I try to get a message out that I am not ready but it fails to stop Declan. I fear he found it all most upsetting. I know I did.
I feel better while John is there and I get into a chair while we plot the no visitors message. I eat and drink on cue like a Trojan to demonstrate how well I am. Darker later. Much.
Good news! That night I am moved to the High-Dependency Unit. It's not good news at all. Extremely black night. Looneys in the unit, and then there are the patients. No sleep, can't put head down because of neck. They want to take observations all the time round the clock.
Thursday 17 February 2011
Tumour Diary, Day 10 - Thu 17th Feb 2011 (UPDATED)
6:10am Might as well give up trying to get sleep. 5 interruptions during the night. 4 times from 3 different people just to get one blood sample (threw my earlier ones away), once for an ECG ("can't find your earlier notes") and then a random power surge that left all the lights blazing on at 5am.
6:20am Just been told I am second on the surgery list, at about 11-12am, and I can have "a wee sleep". Thanks
9:20am How does that poem go? "If you can keep your head while all around you have no clue" or something like that. I'll spare you the details. Just need to be patient.
Consent form signed again. Enough times now to remove all three of my brains
Thanks all for your kind messages :-)
...
They take me down at about 11:45. I hand them my possessions, including this 'phone. Keep me waiting for a while outside theatre. When they put me under I'm not even aware
6:20am Just been told I am second on the surgery list, at about 11-12am, and I can have "a wee sleep". Thanks
9:20am How does that poem go? "If you can keep your head while all around you have no clue" or something like that. I'll spare you the details. Just need to be patient.
Consent form signed again. Enough times now to remove all three of my brains
Thanks all for your kind messages :-)
...
They take me down at about 11:45. I hand them my possessions, including this 'phone. Keep me waiting for a while outside theatre. When they put me under I'm not even aware
Wednesday 16 February 2011
Tumour Diary, Day 9 - Wed 16th Feb 2011
8:55am Morning. Breakfast at home is nice. For those of you more pharmacologically-minded, here is what I've been enjoying with my cereal:
• Dexamethazone 4 Mg - steroid to reduce brain swelling
• Metoclopramide 10mg - for hiccups
• Omeprazole 20mg - for heartburn caused by the steroids
12:40pm Enjoying preparing lunch. Pasta is on the boil. Tortiglioni with an Arrabiatta sauce. Yum
1:45pm More pills. Nice call from Rosie. Off to get hair cut. I figure that if they're going to shave the back of my neck tomorrow then I might as well have the rest of it nice and short for when it all grows back.
3:20pm Great haircut at Henry & Son as always. Deniz is always good for a chat
5pm Many thanks to neighbour Carol for ferrying me about. Also for looking after my plants while I'm "inside". They're in for a treat - not used to such TLC ;-)
6pm Very nice but slightly manic tea at Katharine & Daniel's. Guess that's normal when you have 4 kids...
8pm Great to be able to go and visit someone else in hospital. Popped in to see Rachel, Nick and their new little boy. Sweet
8:45pm Arrive back on the ward at King's to find someone in my room and the nursing staff with no clue about my arrival.
"We thought you'd gone home"
"I'm here to have surgery"
"Oh really? What was your name again?"
Waiting in the day room while they scratch around. Don't worry guys, surgery's not until the morning...
10pm They find me a bed in a room with 3 others. Not a lot of sleep tonight then
10:45pm Gentleman in bed next to mine has Yoda announcing loudly every time he gets a text message. Bet the other inmates love him. If he doesn't find silent mode on his 'phone soon I might have to help him by stamping on it.
Final confirmation of surgery list doesn't come through until 4am so I won't know for definite until I wake. Should be fine, ready as I'll ever be now. No more delays please
• Dexamethazone 4 Mg - steroid to reduce brain swelling
• Metoclopramide 10mg - for hiccups
• Omeprazole 20mg - for heartburn caused by the steroids
12:40pm Enjoying preparing lunch. Pasta is on the boil. Tortiglioni with an Arrabiatta sauce. Yum
1:45pm More pills. Nice call from Rosie. Off to get hair cut. I figure that if they're going to shave the back of my neck tomorrow then I might as well have the rest of it nice and short for when it all grows back.
3:20pm Great haircut at Henry & Son as always. Deniz is always good for a chat
5pm Many thanks to neighbour Carol for ferrying me about. Also for looking after my plants while I'm "inside". They're in for a treat - not used to such TLC ;-)
6pm Very nice but slightly manic tea at Katharine & Daniel's. Guess that's normal when you have 4 kids...
8pm Great to be able to go and visit someone else in hospital. Popped in to see Rachel, Nick and their new little boy. Sweet
8:45pm Arrive back on the ward at King's to find someone in my room and the nursing staff with no clue about my arrival.
"We thought you'd gone home"
"I'm here to have surgery"
"Oh really? What was your name again?"
Waiting in the day room while they scratch around. Don't worry guys, surgery's not until the morning...
10pm They find me a bed in a room with 3 others. Not a lot of sleep tonight then
10:45pm Gentleman in bed next to mine has Yoda announcing loudly every time he gets a text message. Bet the other inmates love him. If he doesn't find silent mode on his 'phone soon I might have to help him by stamping on it.
Final confirmation of surgery list doesn't come through until 4am so I won't know for definite until I wake. Should be fine, ready as I'll ever be now. No more delays please
Tuesday 15 February 2011
Tumour Diary, Day 8 - Tue 15th Feb 2011
8:45am Well yesterday evening was extremely dull, only being allowed to get out of bed at 9. All the nightlife is over round here by then.
On the upside, hope to get out of here today until tomorrow night. Not counting any chickens just yet...
10:50am All systems go. Just need my pills and I'm off...
11:50am So here we are an hour later and no sign. I just cannot believe how slow they are
1:15pm Finally got out. My good friend Jenny most kindly and patiently waits to give me a lift home.
2:45pm Home. Not back into hospital until tomorrow night - hurrah!
Off to Bluewater now for some retail therapy and a reunion with my old mate Kurt - fantastic.
9:10pm Had a great time catching up with Kurt. A superb pick-me-up tonic.
Collected both my new pairs of specs, and although I say so myself, they do look great.
Don't think I'll be going to Oriana rehearsal tomorrow evening. Bit much. Need a quiet run-in before the main event. Also don't have the right music, or stones to bang together
On the upside, hope to get out of here today until tomorrow night. Not counting any chickens just yet...
10:50am All systems go. Just need my pills and I'm off...
11:50am So here we are an hour later and no sign. I just cannot believe how slow they are
1:15pm Finally got out. My good friend Jenny most kindly and patiently waits to give me a lift home.
2:45pm Home. Not back into hospital until tomorrow night - hurrah!
Off to Bluewater now for some retail therapy and a reunion with my old mate Kurt - fantastic.
9:10pm Had a great time catching up with Kurt. A superb pick-me-up tonic.
Collected both my new pairs of specs, and although I say so myself, they do look great.
Don't think I'll be going to Oriana rehearsal tomorrow evening. Bit much. Need a quiet run-in before the main event. Also don't have the right music, or stones to bang together
Monday 14 February 2011
Tumour Diary, Day 7 - Mon 14th Feb 2011
6:45am Just been told I'm not Nil By Mouth any more. That suggests no surgery today. Will get confirmation
8:05am No sign of going anywhere and the nursing staff are sure I'm not Nil By Mouth. There isn't really any doubt that there will be no surgery today. Once I've had breakfast there definitely won't be
8:25am Just had a chat with the anaesthetist. He seems to think all systems are go. Trying to confirm one way or the other
8:35am Seen the registrar. Crossed wires here. Surgery going ahead. Good job no breakfast yet. Better get packed up and ready
8:45am Signing off now. All the mix-up has put us behind schedule. See you afterwards
9:35am Belay that order. Consultant and NV Registrar been in. Seems they want to do another angiogram today instead. Plan is review it tomorrow, op probably Thursday. Might even let me out overnight Tues-Weds. Only just got gown and stockings on too. Still NBM for angiogram :-(
10:10am Need a break. IPlayer here I come
Bill "the Brain" pops in for a chat. He hasn't heard the latest. Fill him in as best I can. He's going to see what he he can find out. Has his own problems though - his wife has her c-section tomorrow. In the same hospital - I should pop down and say Hi
11:30am Doze. Observations
12:00pm Radiologist visits. Explains angiogram and risks. 1/500 of stroke. Joy. Sign consent form. He does say I could have some light food. Garçon!
1:40pm One cheese and tom sandwich demolished. Now for the "Rich Chocolate Truffle Mousse".
2:35pm Apparently they will come for me to do the angiogram in the next 15 minutes. Hm. Hospital minutes maybe
3:45pm A Mr Declan Flynn called. Thoroughly decent chap, genial conversation.
4:30pm Off we go down to Neuroradiology. Fun and games with needles, long catheters, dyes and enormous machines.
5:30pm All done, back in my room. Following the angiogram I now have to remain horizontal until 7pm, at which point I am allowed up to the dizzying angle of 25 degrees. From 9 I can get up. They have brought me a cup of tea with a straw, however from this position I fear it isn't going to be long enough.
7:40pm Feeling pleased with myself. Managed to eat soup, Jerk Chicken, rice and beans all in a horizontal position with just my fingers and a straw, with no assistance. Dread to think what my face looks like though. Won't find out until I get up later and all the bits of cold food appear
8:05am No sign of going anywhere and the nursing staff are sure I'm not Nil By Mouth. There isn't really any doubt that there will be no surgery today. Once I've had breakfast there definitely won't be
8:25am Just had a chat with the anaesthetist. He seems to think all systems are go. Trying to confirm one way or the other
8:35am Seen the registrar. Crossed wires here. Surgery going ahead. Good job no breakfast yet. Better get packed up and ready
8:45am Signing off now. All the mix-up has put us behind schedule. See you afterwards
9:35am Belay that order. Consultant and NV Registrar been in. Seems they want to do another angiogram today instead. Plan is review it tomorrow, op probably Thursday. Might even let me out overnight Tues-Weds. Only just got gown and stockings on too. Still NBM for angiogram :-(
10:10am Need a break. IPlayer here I come
Bill "the Brain" pops in for a chat. He hasn't heard the latest. Fill him in as best I can. He's going to see what he he can find out. Has his own problems though - his wife has her c-section tomorrow. In the same hospital - I should pop down and say Hi
11:30am Doze. Observations
12:00pm Radiologist visits. Explains angiogram and risks. 1/500 of stroke. Joy. Sign consent form. He does say I could have some light food. Garçon!
1:40pm One cheese and tom sandwich demolished. Now for the "Rich Chocolate Truffle Mousse".
2:35pm Apparently they will come for me to do the angiogram in the next 15 minutes. Hm. Hospital minutes maybe
3:45pm A Mr Declan Flynn called. Thoroughly decent chap, genial conversation.
4:30pm Off we go down to Neuroradiology. Fun and games with needles, long catheters, dyes and enormous machines.
5:30pm All done, back in my room. Following the angiogram I now have to remain horizontal until 7pm, at which point I am allowed up to the dizzying angle of 25 degrees. From 9 I can get up. They have brought me a cup of tea with a straw, however from this position I fear it isn't going to be long enough.
7:40pm Feeling pleased with myself. Managed to eat soup, Jerk Chicken, rice and beans all in a horizontal position with just my fingers and a straw, with no assistance. Dread to think what my face looks like though. Won't find out until I get up later and all the bits of cold food appear
Sunday 13 February 2011
Tumour Diary Day 6 - Sun 13th Feb 2011
11:00am Trying to relax at my folks. Little nephew William (15 months) is helping to provide a welcome distraction
...
10:00pm Back in my room at King's, on-schedule. Fresh name tag, so now I belong to them once more.
10:20pm Oops almost forgot to pay the deposit for the choir tour to Kiev. Just squeaked it in.
10:25pm Time to shave methinks. Won't have time in the morning and it's important to look your best for these things, don't you find?
11:20pm Better get to bed I guess. Early start tomorrow. Toodle-pip
...
10:00pm Back in my room at King's, on-schedule. Fresh name tag, so now I belong to them once more.
10:20pm Oops almost forgot to pay the deposit for the choir tour to Kiev. Just squeaked it in.
10:25pm Time to shave methinks. Won't have time in the morning and it's important to look your best for these things, don't you find?
11:20pm Better get to bed I guess. Early start tomorrow. Toodle-pip
Saturday 12 February 2011
Tumour Diary, Day 5 - Sat 12th Feb 2011
5am LIGHTS ON. Time to take blood from an artery to measure blood gases. The doctor has an extremely good bedside manner so I let her off the disturbance pretty quickly. Even if it does take her 2 goes to get the sample - ouch.
Doze off.
6am LIGHTS ON. Doctor Charming returns. Seems she has had a couple of equipment failures that mean she will have to do it all over again, in the other arm this time. Two attempts again. I am very understanding ;-)
8:15am Munched my breakfast already. Just need the Registrar to come and let me go. Fingers crossed!
11:45am Seen the Docs. Been given all the gory details and nasty possible outcomes. Asked lots of questions, including about being able to keep the bits of bone they remove afterwards, which some of the more macabre of you have suggested.Signed the consent form. Confirmed that I can come back to the same room tomorrow night.
Free to go. Outtahere!
6:55pm Chilling at my folks. Had nice visit from Beth, an old friend. Looking forward to meal out tonight
Doze off.
6am LIGHTS ON. Doctor Charming returns. Seems she has had a couple of equipment failures that mean she will have to do it all over again, in the other arm this time. Two attempts again. I am very understanding ;-)
8:15am Munched my breakfast already. Just need the Registrar to come and let me go. Fingers crossed!
11:45am Seen the Docs. Been given all the gory details and nasty possible outcomes. Asked lots of questions, including about being able to keep the bits of bone they remove afterwards, which some of the more macabre of you have suggested.Signed the consent form. Confirmed that I can come back to the same room tomorrow night.
Free to go. Outtahere!
6:55pm Chilling at my folks. Had nice visit from Beth, an old friend. Looking forward to meal out tonight
Friday 11 February 2011
Tumour Diary, Day 4 - Fri 11th Feb 2011
6:30am!! Observations. Don't care about b****y BP. Why do they have to turn all the lights on?! Need more sleep
8:15am BREAKFAST at last
9:00am Registrar arrives. Going to confirm that I can go home for the weekend. Would want me back on Sunday night though. Says he'll get back to me in half an hour. Hope he's got a new watch since yesterday
10:30am Consultant and Registrar come to see me together - I am honoured. Shame the news isn't that great. Because they didn't get the oxygen saturation readings overnight last night they want to do it tonight, so I won't get out until tomorrow now. Bugger.
However they will let me out for the rest of the day. If the slow hospital wheels will start turning...
11:45am Cannula out. I intend to be not far behind, as soon as I pack my bags
11:55am Nice surprise flying visit from Ruth Maglovski - lovely friend!
12:20pm Packing bag again. Suppose I might be able to fit lunch in before I go...
1:10pm Dressed, packed, fed and watered. Plan:
1) Try and confirm that the necessary equipment will be here tonight so I'm not wasting my time again
2) Walk out the door
3) Home
4) Shower!
5) Sort out stuff for weekend and for following few weeks (expect 2 weeks recovery in hospital followed by another 2 weeks, probably with my folks)
6) Social activity! Any suggestions?
7) Return to King's for overnight monitoring
5:33pm At home, car loaded up. Attempting to solicit an evening's fun in the Camberwell/East Dulwich area from 6:45pm onwards until I turn back into a pumpkin
7:05pm Gobsmacked. Second day in a row they have failed to get hold of the right piece of kit. When I see them the surgeons will be getting a piece of my mind. And that's before the operation.
Fortunately the sterling nursing staff have rallied round and obtained an alternative machine that they will set up during the night and record the results manually at half-hour intervals - shouldn't wake me up.
Now off to Jazz at the Crypt, St Giles, Camberwell. Cool venue, great music and really nice food. Scraped together a couple of friends to come along. Need some relaxation!
10:01pm Very nice time at the Crypt. Good food, most pleasant food, lovely company. Thanks to Claire and Catherine for joining me. And also to Gillian, who was about to drive down when she discovered that her car had been stolen!
Back in my cell for the night now. Hope the monitoring is successful and I can get away in the morning.
8:15am BREAKFAST at last
9:00am Registrar arrives. Going to confirm that I can go home for the weekend. Would want me back on Sunday night though. Says he'll get back to me in half an hour. Hope he's got a new watch since yesterday
10:30am Consultant and Registrar come to see me together - I am honoured. Shame the news isn't that great. Because they didn't get the oxygen saturation readings overnight last night they want to do it tonight, so I won't get out until tomorrow now. Bugger.
However they will let me out for the rest of the day. If the slow hospital wheels will start turning...
11:45am Cannula out. I intend to be not far behind, as soon as I pack my bags
11:55am Nice surprise flying visit from Ruth Maglovski - lovely friend!
12:20pm Packing bag again. Suppose I might be able to fit lunch in before I go...
1:10pm Dressed, packed, fed and watered. Plan:
1) Try and confirm that the necessary equipment will be here tonight so I'm not wasting my time again
2) Walk out the door
3) Home
4) Shower!
5) Sort out stuff for weekend and for following few weeks (expect 2 weeks recovery in hospital followed by another 2 weeks, probably with my folks)
6) Social activity! Any suggestions?
7) Return to King's for overnight monitoring
5:33pm At home, car loaded up. Attempting to solicit an evening's fun in the Camberwell/East Dulwich area from 6:45pm onwards until I turn back into a pumpkin
7:05pm Gobsmacked. Second day in a row they have failed to get hold of the right piece of kit. When I see them the surgeons will be getting a piece of my mind. And that's before the operation.
Fortunately the sterling nursing staff have rallied round and obtained an alternative machine that they will set up during the night and record the results manually at half-hour intervals - shouldn't wake me up.
Now off to Jazz at the Crypt, St Giles, Camberwell. Cool venue, great music and really nice food. Scraped together a couple of friends to come along. Need some relaxation!
10:01pm Very nice time at the Crypt. Good food, most pleasant food, lovely company. Thanks to Claire and Catherine for joining me. And also to Gillian, who was about to drive down when she discovered that her car had been stolen!
Back in my cell for the night now. Hope the monitoring is successful and I can get away in the morning.
Thursday 10 February 2011
Tumour Diary, Day 3 - Thu 10th Feb 2011
7:25am Observations. BP - no idea. Trying to get back to sleep
7:30am Registrar arrives. Says he will discuss situation with Consultant and return in an hour. Guess I should make a list of questions so I don't forget (no breakfast to distract me, of course):
* Please show me my scans and explain them
* When will the operation be? If today, at what time?
* Please describe in detail what you plan to do
* How long will the operation take?
* Are there risks? Complications?
* How long will the recovery period be? What are the things I will need to recover from?
* How long before I can go home? Any special care needs I will have?
* After care/follow-up?
8:30 Nurse brings me my steroid tablets (to help with any brain swelling). Allowed the tiniest sip of water to take them
9:25am No sign of the Registrar. Still waiting. Bill "the Brain" just popped in. He shares my concern about the apparent lack of planning/transparency. Says this isn't the kind of operation you just "fit in", and if I haven't heard anything in an hour I am to call him.
10:45am No news. Called Bill. He's on the case.
11:25am Bill rings back. He has appointed someone to find out "yea or nay" for definite for today, thinks his gut feel is probably "nay". Will call him in half an hour - would be good to be able to have lunch!
12:15pm Shower. Ditch the fetid stockings - hooray!
12:45pm Wow. Gone from news blackout to information overload! Consultant has finally been to see me and talked me through the scans. First thing is there will be no op today (food!). It's a four-hour procedure so they will know by tonight if there's a slot tomorrow. If not Friday they will release me over the weekend. They will definitely do it within the next week i.e. Thursday latest.
Key points (not for the squeamish):
I have a cystic haemangioblastoma in the lower brain stem/upper cervical spinal cord (c1).
There is a birthmark/lesion on the rear left surface of the spinal column behind the c1 vertebra. Blood leaking from it inside the spinal column has formed a large cyst slap bang in the middle of the cord.
To see the cyst on the scans, it looks big, to the extent that I was amazed that my symptoms aren't much more serious. The doctors share this view, which is why they rushed me in here as soon as they saw it.
The thing itself is benign, but given the size of it, its location and the fact that it is growing, it has to be dealt with swiftly.
Usually the primary approach with one of these cysts is to insert a catheter to drain it, then seal off the blood supply with glue.
The location in this case makes this method impossible. Surgery is the only option.
The approach will be to open a window in the neck and cut away the c1 vertebra at the back and go through the sheath around the spinal column to gain access to the site.
The cyst will then be drained and plugged with glue. The "birthmark" will be removed also.
Obviously care has to be taken not to damage the nerves any further and not to disrupt the blood supply to the spinal cord. Then it's just a question of closing everything up. The vertebra will not be replaced - apparently lots of people have this removed, both children and adults, with no ill effects. The neck muscles provide adequate protection.
So, doesn't sound too bad, does it? What makes it serious is the size and position of the cyst right in the middle of the spinal cord, plus the high vascularity of the area (lots of blood vessels).
Chances of the procedure being a success are 95%. What this means is that I would expect to be much the same as I am now. Existing nerve damage, consisting of stretching caused by the cyst, will not be repaired. They will not rule out an improvement, but they do not expect it. The main benefit will be no worsening of the condition.
A worst-case scenario is that a disaster occurs resulting in loss of blood supply to the spinal column and nerve death. I would be paralysed from the neck down and on a ventilator for the rest of my days. They estimate the chances of this as remote, at 1 in 500 or less.
So, lots to think about there.
Bill "the Brain" is coming to see me later for a chat. All visits gratefully received.
2pm They want to monitor my Oxygen saturation levels, not sure why. Have to have a little machine clamped onto my index finger all the time
3pm No visitors yet. Must be time for the tea trolley soon...
3:15pm My neighbour Carol arrives for a nice surprise visit.
3:55pm Carol departs, Caroline arrives. She's a rather lovely choir friend. Brings me posh coffee, funny reading material and her delightful conversation. We talk gory brain stuff for ages
4:30pm Another one of my lovely neighbours arrives - Kirsty. Brief but welcome surprise. I'm doing very well today
5:30pm Member of the surgical team arrives to inform me that there will be no possibility of surgery until Monday - hopefully can get a weekend pass to go and visit my folks
6pm Louise arrives bearing generous gifts. She made the mistake of asking me what I wanted, and then proceeded to actually try and get it for me, when I wasn't being 100% serious. So I got green grapes (as requested) and Duchy Originals organic toffee x 2 (I asked for Thorton's Original Special Toffee partly as a joke) plus some special chocolate brownies. Must remember in future that when Louise asks what you want, she will actually try and get it for you. Feel bad now...
7pm Fran and Kate arrive, followed shortly by Caroline M with a nice card.
I think the hospital staff are a little bemused by all the attention I'm getting. No complaints here...
9:15pm Visitors are away. Time to catch up on some correspondence.
Hopefully in the morning can get away home...
11pm Corrected the nursing staff on their misapprehension that I need to be Nil By Mouth again from midnight
11:05pm Apparently it's not oxygen saturation they want to measure overnight, but pulse oximetry, whatever that is [actually the same thing - Ed]. Anyway someone forgot to order the right piece of kit before the relevant department closed, so no monitoring of that will be happening tonight. In the morning they'd better not even for a second entertain the idea that I can stay here another night for them to monitor it. Apparently it's a portable jobby anyway, so I could just take it with me...
7:30am Registrar arrives. Says he will discuss situation with Consultant and return in an hour. Guess I should make a list of questions so I don't forget (no breakfast to distract me, of course):
* Please show me my scans and explain them
* When will the operation be? If today, at what time?
* Please describe in detail what you plan to do
* How long will the operation take?
* Are there risks? Complications?
* How long will the recovery period be? What are the things I will need to recover from?
* How long before I can go home? Any special care needs I will have?
* After care/follow-up?
8:30 Nurse brings me my steroid tablets (to help with any brain swelling). Allowed the tiniest sip of water to take them
9:25am No sign of the Registrar. Still waiting. Bill "the Brain" just popped in. He shares my concern about the apparent lack of planning/transparency. Says this isn't the kind of operation you just "fit in", and if I haven't heard anything in an hour I am to call him.
10:45am No news. Called Bill. He's on the case.
11:25am Bill rings back. He has appointed someone to find out "yea or nay" for definite for today, thinks his gut feel is probably "nay". Will call him in half an hour - would be good to be able to have lunch!
12:15pm Shower. Ditch the fetid stockings - hooray!
12:45pm Wow. Gone from news blackout to information overload! Consultant has finally been to see me and talked me through the scans. First thing is there will be no op today (food!). It's a four-hour procedure so they will know by tonight if there's a slot tomorrow. If not Friday they will release me over the weekend. They will definitely do it within the next week i.e. Thursday latest.
Key points (not for the squeamish):
I have a cystic haemangioblastoma in the lower brain stem/upper cervical spinal cord (c1).
There is a birthmark/lesion on the rear left surface of the spinal column behind the c1 vertebra. Blood leaking from it inside the spinal column has formed a large cyst slap bang in the middle of the cord.
To see the cyst on the scans, it looks big, to the extent that I was amazed that my symptoms aren't much more serious. The doctors share this view, which is why they rushed me in here as soon as they saw it.
The thing itself is benign, but given the size of it, its location and the fact that it is growing, it has to be dealt with swiftly.
Usually the primary approach with one of these cysts is to insert a catheter to drain it, then seal off the blood supply with glue.
The location in this case makes this method impossible. Surgery is the only option.
The approach will be to open a window in the neck and cut away the c1 vertebra at the back and go through the sheath around the spinal column to gain access to the site.
The cyst will then be drained and plugged with glue. The "birthmark" will be removed also.
Obviously care has to be taken not to damage the nerves any further and not to disrupt the blood supply to the spinal cord. Then it's just a question of closing everything up. The vertebra will not be replaced - apparently lots of people have this removed, both children and adults, with no ill effects. The neck muscles provide adequate protection.
So, doesn't sound too bad, does it? What makes it serious is the size and position of the cyst right in the middle of the spinal cord, plus the high vascularity of the area (lots of blood vessels).
Chances of the procedure being a success are 95%. What this means is that I would expect to be much the same as I am now. Existing nerve damage, consisting of stretching caused by the cyst, will not be repaired. They will not rule out an improvement, but they do not expect it. The main benefit will be no worsening of the condition.
A worst-case scenario is that a disaster occurs resulting in loss of blood supply to the spinal column and nerve death. I would be paralysed from the neck down and on a ventilator for the rest of my days. They estimate the chances of this as remote, at 1 in 500 or less.
So, lots to think about there.
Bill "the Brain" is coming to see me later for a chat. All visits gratefully received.
2pm They want to monitor my Oxygen saturation levels, not sure why. Have to have a little machine clamped onto my index finger all the time
3pm No visitors yet. Must be time for the tea trolley soon...
3:15pm My neighbour Carol arrives for a nice surprise visit.
3:55pm Carol departs, Caroline arrives. She's a rather lovely choir friend. Brings me posh coffee, funny reading material and her delightful conversation. We talk gory brain stuff for ages
4:30pm Another one of my lovely neighbours arrives - Kirsty. Brief but welcome surprise. I'm doing very well today
5:30pm Member of the surgical team arrives to inform me that there will be no possibility of surgery until Monday - hopefully can get a weekend pass to go and visit my folks
6pm Louise arrives bearing generous gifts. She made the mistake of asking me what I wanted, and then proceeded to actually try and get it for me, when I wasn't being 100% serious. So I got green grapes (as requested) and Duchy Originals organic toffee x 2 (I asked for Thorton's Original Special Toffee partly as a joke) plus some special chocolate brownies. Must remember in future that when Louise asks what you want, she will actually try and get it for you. Feel bad now...
7pm Fran and Kate arrive, followed shortly by Caroline M with a nice card.
I think the hospital staff are a little bemused by all the attention I'm getting. No complaints here...
9:15pm Visitors are away. Time to catch up on some correspondence.
Hopefully in the morning can get away home...
11pm Corrected the nursing staff on their misapprehension that I need to be Nil By Mouth again from midnight
11:05pm Apparently it's not oxygen saturation they want to measure overnight, but pulse oximetry, whatever that is [actually the same thing - Ed]. Anyway someone forgot to order the right piece of kit before the relevant department closed, so no monitoring of that will be happening tonight. In the morning they'd better not even for a second entertain the idea that I can stay here another night for them to monitor it. Apparently it's a portable jobby anyway, so I could just take it with me...
Wednesday 9 February 2011
Tumour Diary, Day 2 - Wed 9th Feb 2011
6:34am About 3 hours' sleep. Woken by Registrar to get me to stick my tongue out at him for 10 seconds. "You can go back to sleep now". Thanks mate. Try to get back to sleep
7am Nurse in for observations. Good news - BP is normal. Try to get back to sleep
7:30am "Stranglish" nurse is back. Must take steroids before breakfast. Try to get back to sleep
8am Up and decent, ready for food!
8:15am No sign yet...
8:30am Consultant rings. Explains that the tumour is a cyst that has grown up around a birthmark. Benign. Not in a good place, but removable. Both tumour and birthmark must go.
They want to do an angiogram today to get some more info. All good news, except...Nil By Mouth. Noooooo!
10am Shower with "Surgical Scrub". Nice. In a surgical gown now, just need the stockings and the ensemble is complete
10:30am Young geeky doctor arrives and proceeds to do all the familiar poking and prodding. Yawn. I perk up when he suggests it might not be necessary for me to be NBM...
10:45am More blood taken. Only a handful this time
11:15am Another formful of questions, strangely familiar...
11:30am Observations. BP up again
11:35am Got my TED stockings on at last. Am made up
12:15pm Doesn't look like lunch will be forthcoming. Time for a nap instead
2pm No news. Bored
2:35pm Tessa arrives - my first visitor - hurrah! All-round fantastic person, and funny too. Perfect pick-me-up
3pm Porter arrives to take me for CT scan. Fortunately Tessa was about to go anyway.
3:40pm After much deferring to urgent stroke victims, finally get CT with contrast
4pm At last out of the hateful military-issue gown and back into civvies. Just in time for my brother John's arrival. Most welcome.
Also welcome is the lifting of the Food & Drink ASBO - Hurrah! Nurses scurry off to rustle up tea and toast. Where are those house-elves when you need them?
Consultant's Registrar arrives to confirm what we already know. Says he is off to review CT results and either he or the Consultant himself will return later.
4:20 Rachel arrives - with millionaire shortbread! Highly favoured lady. Hope all goes well with the birth of her second son, on Friday, if they induce...
4:45 Fran and Louise arrive - now we are 5. A proper party, except for the absence of gin.
They bring generous presents; Louise has loaded an ipod with an eclectic music selection and brings it complete with charger - how fab is that? Not to be outdone, at my request Fran has brought not one but two toothbrushes, plus some trashy chicklit novel she found abandoned on the train. I'm being unkind; she also brought some really great books too. Anyway what really matters is that they came. Special friends
5ish Rachel leaves and Declan arrives. Very pleased to see him (as always). We are all very well entertained by "the Special One". Generous lifting of spirits all round.
6pm John leaves, followed a bit later by the gels. Fortunately John notifies us that he has left his bag behind before the gels set off, so they take it and return it to him at Victoria. Result.
6:30pm Dinner arrives and Declan graciously bows out; he can no longer make himself heard over the loud troughing noises anyway.
6:33pm Dinner finished. 'Nuff said.
6:40pm Bill "the Brain" rings. He is concerned that no-one has come to see me with a plan of action yet.
7pm Observations. BP highish but I am getting a bit stressed not knowing what is going on.
Time for some Bookface before starting to phone back all the nice people who 'phoned and left messages.
8:15pm Still no word from the consultants. According to the nurses I am to be NBM after midnight and they will try and fit in surgery tomorrow.Concerned now that there doesn't seem to be a clearly-defined plan, or if there is, no-one has communicated it to me...
8:30pm Katharine & Daniel arrive for a welcome visit. Really appreciate all they are doing - amazing friends. Well, more like family really. Lovely cards made by godtwins Tom & Miriam (7). Seem to be having some trouble maintaining the stiff upper lip as I write this - must be a side-effect of the tumour
9:30pm Visitors depart. Must call back well-wishers.
11:50 Calls made and thanks expressed. Observations taken - BP highish but acceptable.
NBM in 10 mins. Hmm, now what can I scoff before bed?
7am Nurse in for observations. Good news - BP is normal. Try to get back to sleep
7:30am "Stranglish" nurse is back. Must take steroids before breakfast. Try to get back to sleep
8am Up and decent, ready for food!
8:15am No sign yet...
8:30am Consultant rings. Explains that the tumour is a cyst that has grown up around a birthmark. Benign. Not in a good place, but removable. Both tumour and birthmark must go.
They want to do an angiogram today to get some more info. All good news, except...Nil By Mouth. Noooooo!
10am Shower with "Surgical Scrub". Nice. In a surgical gown now, just need the stockings and the ensemble is complete
10:30am Young geeky doctor arrives and proceeds to do all the familiar poking and prodding. Yawn. I perk up when he suggests it might not be necessary for me to be NBM...
10:45am More blood taken. Only a handful this time
11:15am Another formful of questions, strangely familiar...
11:30am Observations. BP up again
11:35am Got my TED stockings on at last. Am made up
12:15pm Doesn't look like lunch will be forthcoming. Time for a nap instead
2pm No news. Bored
2:35pm Tessa arrives - my first visitor - hurrah! All-round fantastic person, and funny too. Perfect pick-me-up
3pm Porter arrives to take me for CT scan. Fortunately Tessa was about to go anyway.
3:40pm After much deferring to urgent stroke victims, finally get CT with contrast
4pm At last out of the hateful military-issue gown and back into civvies. Just in time for my brother John's arrival. Most welcome.
Also welcome is the lifting of the Food & Drink ASBO - Hurrah! Nurses scurry off to rustle up tea and toast. Where are those house-elves when you need them?
Consultant's Registrar arrives to confirm what we already know. Says he is off to review CT results and either he or the Consultant himself will return later.
4:20 Rachel arrives - with millionaire shortbread! Highly favoured lady. Hope all goes well with the birth of her second son, on Friday, if they induce...
4:45 Fran and Louise arrive - now we are 5. A proper party, except for the absence of gin.
They bring generous presents; Louise has loaded an ipod with an eclectic music selection and brings it complete with charger - how fab is that? Not to be outdone, at my request Fran has brought not one but two toothbrushes, plus some trashy chicklit novel she found abandoned on the train. I'm being unkind; she also brought some really great books too. Anyway what really matters is that they came. Special friends
5ish Rachel leaves and Declan arrives. Very pleased to see him (as always). We are all very well entertained by "the Special One". Generous lifting of spirits all round.
6pm John leaves, followed a bit later by the gels. Fortunately John notifies us that he has left his bag behind before the gels set off, so they take it and return it to him at Victoria. Result.
6:30pm Dinner arrives and Declan graciously bows out; he can no longer make himself heard over the loud troughing noises anyway.
6:33pm Dinner finished. 'Nuff said.
6:40pm Bill "the Brain" rings. He is concerned that no-one has come to see me with a plan of action yet.
7pm Observations. BP highish but I am getting a bit stressed not knowing what is going on.
Time for some Bookface before starting to phone back all the nice people who 'phoned and left messages.
8:15pm Still no word from the consultants. According to the nurses I am to be NBM after midnight and they will try and fit in surgery tomorrow.Concerned now that there doesn't seem to be a clearly-defined plan, or if there is, no-one has communicated it to me...
8:30pm Katharine & Daniel arrive for a welcome visit. Really appreciate all they are doing - amazing friends. Well, more like family really. Lovely cards made by godtwins Tom & Miriam (7). Seem to be having some trouble maintaining the stiff upper lip as I write this - must be a side-effect of the tumour
9:30pm Visitors depart. Must call back well-wishers.
11:50 Calls made and thanks expressed. Observations taken - BP highish but acceptable.
NBM in 10 mins. Hmm, now what can I scoff before bed?
Tumour Diary, Day 1 - Feb 8th 2011
Messages from the consultant on my answerphone when I got home from work. I'd had MRI scans 10 days ago on head and neck. They just got the results and summoned me in immediately. Tumour with cyst down where the head joins the neck. All they will say is - "not in a very good place".
7:10pm Start 'phoning family. Just get on with it as quickly as possible. Nightmare is not a strong enough word. Start packing a bag. Rang boss at work.
7:35pm Ring my good friends Katharine and Daniel. Immediately they insist on driving me to the hospital. (when Katharine insists, you don't refuse). God bless them!
9:10pm Arrive at King's College Hospital. As instructed, go to A&E because beds are in short supply. And this is the NHS BEFORE George Osborne takes an axe to it...
9:30pm Registered. Lots of kind messages coming in. Starting to sink in; get a tiny bit emotional for a second or two, but then get a grip.Waiting for my fantastic friend whom I shall call "Bill the Brain" to arrive. Bill's a Neurosurgeon at King's and has driven in from home specially to see me. Complete hero. Sees me safely into a treatment room and offers reassuring feedback about the problem and potential treatment.
10:30pm They've been pulling and prodding me, hitting me with hammers, even poking me in the eyes! Taken a load of blood (nearly an armful). Nurse sprayed some on the couch and my trousers for good measure. At least now I look like a proper A&E patient, covered in blood
11:00pm The long wait for a bed continues. Daniel still here keeping me company. Trooper!
12:45 Daniel off home. Observations taken again (3rd time). Blood Pressure, which was a bit high before, has gone down a bit.
1:00am Wheeled to one of the Neurosurgery wards where a bed has come free. Room to myself with ensuite. Luxury!
1:45am More observations. BP a bit better. MRSA swabs - fun. Not. Nice nurse brings most welcome tea and biscuits.
2:00am Now sporting ill-fitting fetching pale green NHS pyjamas. Different nurse asks me lots of questions from a form. His English pronunciation is slightly foreign to me so we have fun while I try and figure out what the hell he is on about, e.g.
"How many pills do you have?"
"Pills? None"
"No, pills when you sleep" (points at bed)
"Oh, pillows! 2 is fine, thank you" etc.
2:30am Typing up this diary while waiting for yet more blood to be taken - good job I still have quite a bit left. Some sleep would be nice.
2:45am It appears I misunderstood my English-strangling friend. No more blood-letting until the morning. To bed!
7:10pm Start 'phoning family. Just get on with it as quickly as possible. Nightmare is not a strong enough word. Start packing a bag. Rang boss at work.
7:35pm Ring my good friends Katharine and Daniel. Immediately they insist on driving me to the hospital. (when Katharine insists, you don't refuse). God bless them!
9:10pm Arrive at King's College Hospital. As instructed, go to A&E because beds are in short supply. And this is the NHS BEFORE George Osborne takes an axe to it...
9:30pm Registered. Lots of kind messages coming in. Starting to sink in; get a tiny bit emotional for a second or two, but then get a grip.Waiting for my fantastic friend whom I shall call "Bill the Brain" to arrive. Bill's a Neurosurgeon at King's and has driven in from home specially to see me. Complete hero. Sees me safely into a treatment room and offers reassuring feedback about the problem and potential treatment.
10:30pm They've been pulling and prodding me, hitting me with hammers, even poking me in the eyes! Taken a load of blood (nearly an armful). Nurse sprayed some on the couch and my trousers for good measure. At least now I look like a proper A&E patient, covered in blood
11:00pm The long wait for a bed continues. Daniel still here keeping me company. Trooper!
12:45 Daniel off home. Observations taken again (3rd time). Blood Pressure, which was a bit high before, has gone down a bit.
1:00am Wheeled to one of the Neurosurgery wards where a bed has come free. Room to myself with ensuite. Luxury!
1:45am More observations. BP a bit better. MRSA swabs - fun. Not. Nice nurse brings most welcome tea and biscuits.
2:00am Now sporting ill-fitting fetching pale green NHS pyjamas. Different nurse asks me lots of questions from a form. His English pronunciation is slightly foreign to me so we have fun while I try and figure out what the hell he is on about, e.g.
"How many pills do you have?"
"Pills? None"
"No, pills when you sleep" (points at bed)
"Oh, pillows! 2 is fine, thank you" etc.
2:30am Typing up this diary while waiting for yet more blood to be taken - good job I still have quite a bit left. Some sleep would be nice.
2:45am It appears I misunderstood my English-strangling friend. No more blood-letting until the morning. To bed!
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