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

MRI Results

6 months since Clival operation
3 months since PBT

1st MRI result all clear :)

Now to enjoy Christmas

The pills have it

After visiting the Doctor last week and getting a better handle on how to use the various pain control tablets I have I am pleased to report I have NO PAIN

Fantastic

Visit to the Doctor

For pain control in my gums, teeth

Gave me a concise guide to the best way to control the pain I have been getting

A great explanation of Proton Therapy

Click on this link to see the graphic properly

http://iuhealth.org/proton-therapy-center/for-patients/proton-therapy-a-closer-look/

Visit to the Dentist

Lots of gum and teeth pain - Dentist found....Nothing
Pain was upper left.  Then went to lower left and right

Put me in a course of antibiotics. Made no diffrence

Side Effects - I've had a few

Since the end of my proton treatment I have had various side effects

About 6 weeks after the end of treatment for 2 weeks I felt pretty rough

Side effects experienced (in no particular order)

Very tender skin on various parts of my head

Very tired at times

Slight nausea

General upset stomach

Food tastes awful

Little appetite

Bad after taste from food

Jaw ache, Mainly LHS, Temple, Ear

Teeth ache, Gum ache

Ear ache

General light ache in the legs (flu like ache)

Cold feet or Cold hands

Very dry mouth over night

Mucus in throat, nose

Occasional loss of sound

We got a dog - Meet Bourbon

Blasted past 7000 hits

Amazingly the blog has blasted past 7000 hits in only a week or so. There is often more than 20 new hits a day
Thank you to all who have contacted me via the contact form.  Those that have been recently diagnosed with Chordoma or have a friend or relative with a Chordoma diagnosis please feel free to ask any questions I would be happy to help if I can

I will try and do a weekly update of any changes or news in my world as things are still changing in me

1st MRI Booked

I have been to see my Oncology Professor and have had my first MRI scan booked for the end of December with a review of the results the next day

What next

Just a quick note to say thanks to all those that have been viewing and commenting on the blog

The blog has had nearly 7000 hits since I started it.

Now that I have had all the treatment and the journey back to health is over the blog will not be updated very much as there is not to much to say

The next big step is an oncology consult and the first MRI scan since completion of treatment

The idea is that the MRI should show no regrowth of the tumour.  I will be having regular scans over the next few years

I will update the blog with the results as and when I get them

Thanks again for your support over this difficult time

Paul