Haircut

I have been desperate for a trim since the operation

I do it myself with a hair trimmer and its a lot of head tilting and slightly awkward positions

Added to that I had to contend with a large scabby scar !

Also there were other small scabs to work around where they fixed my head in a frame for the op

Anyway it took 4 times longer than normal but I managed it and I have a well trimmed bonce :)

Beginning to feel a bit more normal

Out of the la-z-boy and a sleep in bed at last

I manage a nights sleep in bed tonight

I have been sleeping on the la-z-boy since being home as its been a lot more comfortable than trying to lay flat in a bed with difficulty in turning etc

Got this chair just after the first operation.  Has been fantastic for recuperation

Home

I am feeling pretty good considering. I will try and update and fill in the past few days when I feel up to it

The surgeon is very pleased with the outcome

Operation 4/5 done

Operation number 4 done or 5 if you include the Biopsy

I was on the operating table approx 7/8 hrs
They feel they have done a good job

I want to surgery at 8am and woke up in recovery around 6pm. As far as I can remember

I am in in pain where I was laid on my side for so long
My right leg and arm and hip and shoulder
They need me fixed in one spot while they do the operation on my head
The head is fixed in a frame while the operate via the left side of my head / neck behind the ear

I will update more when I feel a bit better

Oddly enough only a little pain from my head so far !

5hr wait to get a bed

I got to the hospital at 3pm. Got a bed at 8pm.
Early start tomorrow for the operation
I have signed the consent so all things underway
In a 3 bed ward by myself so the only snoring will be my own !

Been awhile since my last post - There is a lot of new stuff

The bottom line is that the Chordoma is back and I am booked in for another operation on the 25th January

They have set aside a full day as me being there only surgery that day and there will be 2 surgeons working as a tag team to get to the Chordoma and hopefully remove it

I am going in late the day before for an early morning kick off for the surgery

Today I have put in a few notes and updates using the correct timeline/dates these things occurred. So have a look at the last 4/5 posts to catch up with what has been going on

Neurosurgery Outpatient Visit 2

Revisit to the clinic to get the results of the CT Angiogram and set up a surgery date

The CT Angiogram was OK and surgery date set for 25th January

Neurosurgery Outpatient Visit

Meeting with my consultant to discuss the outcome of the MRI and their proposed treatment

The Chordoma Tumour at the level of C1 just beneath the occipital condyle

They want to do more surgery. Its a bit more difficult this time as they are going in the same area
I have to have a CT angiogram as they need to check the blood flow to my brain as they may need to occlude (cut) one of the veritable artery during the surgery and they need know I have good blood flow as I could suffer a stroke if there is a lack of blood flow

They may have to do surgery around the space of the spinal chord which may need to be patched up I then could get pseudomeningocele


C1 is the top bone of the spine

Oncology Clinic - Results day - Not Good

Since my last MRI there has been a definite increase in size of the "blob" that has been seen on previous MRI scans

That means that this "blob" is Chordoma and not water as they (and I) had hoped

They have booked me in a week from now to see the surgeon in the skull base clinic

There proposal is resection of the cancer if possible and if not fully possible to move is as far away from the brain stem as possible

This will give an apparent clinical advantage when they carry out more radiation

This radiation is likely to be normal radiation rather than proton as
1. They don't believe I will get funding
2. If I did get funding the proton centre may not want to do further radiation

We will cross that bridge after successful surgery

MRI day

Another MRI

Microscope cells

I had a MRI a week or so ago
I have had a no change report from my oncologist on Friday which is good news
They still cannot tell wether the lump they see is Chordoma or water but as its not changed they feel that it likely to be water

I also had a chest/lung CT scan as a precaution and that was ok too

They still believe I will have microscope cells of Chordoma in the area where the new growth occurred back in October 2015
They are are planning for the future if/when there is change
There is talk of more radiation but what/when/where is still unknown

Hopefully there will be no change for years

I feel well and healthy so can't complain

Blimey another MRI !!

Must be well over 20 now

A weather history of when I was in the USA

https://www.wunderground.com/history/airport/KJAX/2013/7/5/CustomHistory.html?dayend=18&monthend=9&yearend=2013&req_city=&req_state=&req_statename=&reqdb.zip=&reqdb.magic=&reqdb.wmo=&MR=1

CT Chest Scan

One of the places this cancer is known to spread or metastasize to is the lung

So they have arrange a chest CT to make sure there is no issues there

Yet Another MRI

I have had loads of these - I wonder what they cost ?

MRI Results. Not so good

I had the results of my latest MRI which has revealed a potential reoccurrence in the same area of the last operation

The doctor went through all the possible treatment plans and courses of action

At the moment they are on a wait and see approach as the "blob" as I have christened it is bigger than it should be so soon after my op so they are not sure what is is

They are to schedule another MRI in 2 months to see if there is any change

Chordoma does not normally grow that quick

MRI time again

They had trouble putting the needle in for the contrast part of the scan
2 attempts on one arm and 1 attempt on the other before going for a vein in the hand
I feel like a pin cussion

Finally MRI result

2 months after my MRI I got to see the surgeon and results
MRI OK
I had a look at the scan you can see the path through the side of my head to the area of the Chordoma removal

Back to work

I went back to work last week. So now into my second week
I have been mostly working from home and have been given a shorter day than normal so I have just about been keeping up to date. Due to the type of work that I have been getting I am in my office for most of the day
Still feel tired - probably as I am now sitting at a desk all day
I stop frequently to get up and move about
My right arm and wrist hurt due the the mouse and keyboard use - not used to it
Look forward to getting jobs which take me out of the house
This will probably be better for me a mix of outside work and desk work
At least I am back to work

MRI

Had an MRI my first since the latest operation
They had trouble as always finding a vein for the contrast scan injection
They did not fit a cannula this time.  The last few MRIs they did as it was a new protocol
I think they were running behind so the just injected the dye whilst in the MRI unit

Healing up. Looking good

The scar has been healing up ok
It is still tender to touch especially at the skull area
Desperate to have a hair cut but as I use clippers concerned I will hurt myself. Will have to go to a barber for the first time in years
Generally fell well in myself. Still get tired - I guess the more I do the more I get tired vicious - circle :)

First outing

Went out for the first time today
Julie drove me to St Ives where we had a wonder around the xmas fair and a light lunch at a cafe
Nice to get out and some very fresh cold air in my lungs

Craniotomy

Apparently I have had a craniotomy

I did not even realise that's the op I was having

I must have missed that discussion with the doc

Anyway staples are out and the scar beginning to look better

I feel pretty good generally  Still tired and have struggled to fully get flat in bed so have sleeped in the lazyBoy

I also have what feels like a blocked left ear. Although it seems like the hearing is affected I don't think it actually is. The doc could not see any issue. Maybe it's the swelling. I will see how it goes

35 Staples

I cant believe how big the surgery cut is on my head/neck
They used 35 staples on the cut to close it up
Have they never heard of keyhole surgery !

Op Time

Had the op. Under the knife for 5 hrs this time

The doc is pleased the result

Removed all they could find

10000 Hits

I just noticed the site has had over 10000 hits
I made the site hidden from search engines in march 2014 as there was nothing much going on
So only those who new the address or stumbled upon it by mistake could find it
This month I reinstated it and quickly the new views have taken the total to over 10000

I hope that the info has helped those who are suffering with this dreadful disease
and those who are caring for and connected to loved ones who have Chordoma

Operation 3/4

Operation scheduled

For November 12
I have to be up bright and early and in the hospital by 7am

The are going to go in via the left side of my head/neck

Chordoma returns

I went for my regular MRI scan a week ago. They scanned me for ages and had to do a few again because the pictures they were getting were not clear enough

Today I went to see my oncologist who advised the tumor had returned
The size is about 1cm by .5cm and they think the way forward is to remove it

I have an appointment next week with the surgeon so will see what he says and what / how they want to go forward

The Blog

Around march 2014 I stopped updating the blog as there was not a great deal to report

I was having 3 monthly MRI scans for the first year after my proton treatment and then then went to 3 scans a year this last year
After this last scan I was expecting to go for 6 month or yearly checks

MRI 2 Booked

My next MRI is booked for the end of march