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...