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

I can drive

Well I always could drive but was not allowed after the op
Had to report it all to DVLA
DVLA sent me a letter today to advise I was OK to start driving again

Good news

Back to work

For those that are still following the blog a quick update to say I am going back to work on Monday 7th

At first I am working from home and when I get confirmation from DVLA that I can drive normal service of work should be resumed

I will be having a staged return so I can get back into the swing of things without undue stress
There have been a few changes in process to get to grips with

And so the past to the future. It all starts afresh

Its been a week since my final Proton Therapy treatment
Its taken a long time to get to this stage since my original diagnosis in February

There have been some big up and downs along the way

I have kept this blog as a form of diary to myself as well as information for relatives and friends who I hope have found useful
It is difficult to remember times and dates of the various events so the blog has been my memory prompt

There are are lot of people to thank who have helped and supported me through this period
The NHS have generally been great with a few exceptions
The GP surgery unfortunately took way longer than they should have to realise that my repeated visits to them need further investigation. Eventually I was sent to the hospital for further investigation
The hospital investigations revealed I had a Clival Chordoma
Whilst undergoing treatment at Addenbrooke's Hospital I found the consultants, surgeons and most of the nursing staff were very good. Although my nursing care after my second operation was below par

Work were understanding.  I was under the threat of redundancy just before my first op so was worried that I would soon not have a job. I was advised day before op that my job was secure

From the very beginning of the consultations with the neuro team there was mention of Proton Therapy.  Much depended on the surgery outcome as to whether I could even be considered for this treatment

After the surgeries and whilst recovering I was put forward and accepted for treatment in Jacksonville Florida at the University of Florida proton centre.  We had 2 weeks to pack up and leave the UK for the best part of three months

The difficult decision was what to do with the children.  Our youngest boys James and Joshua would be finishing their primary school and starting their secondary school in the period we would be away. Our eldest Thomas would be starting his final yr
After much heartache we decided this was a critical period in their schooling and to miss these periods of school would be tough
Also what would they do in Jacksonville ?.  With me off to treatment every day they would have a lot of bored time.  Luckily we had the help of my sisters Clare and Anne who shared the bulk of care for the boys.  Also thanks to Andy, Kelly and gang. Sue and Dave. My nephew Matthew and Niece Rachel and of course my mum who all did their bit in looking after the boys
We had many many offers of help and we appreciate the kindness of you all

And so to Proton
The kindness and professionalism of all the staff at the proton centre was amazing.  They put a lot of effort to make it a community we were encouraged to join in and take part if we wanted to
We enjoyed the events we attended and the things we did ourselves - we needed to keep busy
We ganged up with a group of fellow patients and careres mainly from The UK
Many thanks to those fellow Brits (you know who you are) we meet who helped to make our time in Jacksonville easier.  We had good times with them.  We already miss you and good luck with your journeys

And so to the future.  It all starts afresh.  I will be having scans periodically to ensure no regrowth. They say if there is no change for 5 yrs I am cured.  Ill drink to that

I am home

I AM HOME !

The lunch bunch

As a Graduate of the Proton treatment I joined other Graduates, Alumni, newbies, patients and carers at the lunch bunch
A lunch laid on every wednesday at the centre

I got up and said a few words about my "journey"

I will attempt to put a few words on here in the next few days describing that journey and the feelings and experiences

Ringing the Chimes - Treatment complete

Today was my last day of treatment at the University of Florida Proton Institute

Some Vid and pics of me ringing the chime of hope - Aud's Chime

My time has come to ring this chime
A simple sound - a simple sign
That tells the world this is my time
To cherish the health that I will find
(Sue Anderson) 

If video not visible click here

Click pics to enlarge

We had a few friends - fellow patients and carers over in the evening for a celebration Chinese meal

Pool day and Barbera Jean's

A lazy day today part by the pool

In the evening went out for a lovely meal with Barry and Jane to Barbara Jean's on the intracoastal waterway
Got a stack of mozi bites !

Jane, Barry and Julie

Georgia - Jekyll Island

We had a trip out to the state of Georgia about an hour or so north of Jacksonville to a place call Jekyll Island Famous as a retreat for rich business people who also built their own mansions the likes of the Goodyears, Rockefellers, and Vanderbilts see The Jekyll Island Club

Click to enlarge pics

Julie with Bill and Mary Ann

Julie and Mary Ann

Biscottis for afternoon cake and goodbye to fellow UK proton patients and carer's

Ronnie and Ted have finished their treatment and are off home this weekend
We went for a afternoon cake fest at Biscottis to say farewell
we will be the next to go in our "group"

Click to enlarge

3,2,1.................I will be done

Only 3 more treatments
Friday, Monday and Tuesday
Hopefully we can get an early flight home

Loooong day at the Proton centre - but the end is in site

I had an treatment time of 11:30 am.  So got their 10:45
On monday you have your vitals done by a nurse and a short consultation by the doctor
The proton gantry I use (red) was running about half an hour behind so we managed to see the doctor at around 11:35 - great I thought we would be off early

The time passed 12 and I popped down to the gantry to see if there was a problem
It turns out they got my time wrong and it should have been 2:30
Also the machine was playing up so there was further delay
I did not get treatment until after 4pm

There were a few more patients from the UK having their first day today so had a chat with them about our mutual experiences
Everyone naturally has a story to tell of their journey so far
We are all grateful of the fact the NHS recognise and fund this treatment for our disease

After today I have six more treatments - counting down the days
We are hopeful we can get out flight moved forward so we can get home soon after treatment finishes

Farewell to Seb and Sue

We went to Perfect rack billiards to say farewell to fellow brit patient Seb and his family who are on their way home this week
Seb played some music as it was open mic night at the bar
His brother and girlfriend also played a set
I had a beer (don't tell my doctor)
We had a lovely evening

Out on the town

We went out on the town last night to The Jacksonville Landings with Sue and David

Some pics. Click to enlarge

View of the Jaguars stadium (top left) from the Berkman Plaza

St Johns River bridges

St Johns River bridges

Jacksonville Landings

A bridge 

David and Sue

Paul and Julie

The hospital next door to the proton centre

The no smoking sign plays second fiddle to the no gun sign

The 1 in 3 million gang

At the moment there are 4 of us at the proton centre from the UK all with Clival Chordoma
Considering how rare it is what are the odds of 4 of us being treated at the same time at the same place
Ronnie and Ted have just completed their treatment and I have about 8 to go and Sue round 15 to go

Click to enlarge

Ted, Ronnie, Me and Sue.  The Clival Chordoma four

At the completion of treatment you ring the chime to commemorate

Ronnie ringing the bell

Ted Ringing the bell

More Brits abroad

Brits abroad

Some of my fellow British patients and carers. At the Proton centre

Click to enlarge

Linda Sue and Julie

Ted and David

Ronnie and Linda

Ronnie's Graduate speech at the wednesday lunch

Proton resumes

After a long weekend here due to the Labour day holiday on Monday the Proton centre reopens

Only 12 more treatments to go (edit only 11 to go. After a meeting today with Dr Malyapa we found out I am having 41 treatments not 42 as I had previously thought)

The end is in sight

Labour day weekend

Peter and Lisa.  Julia's brother and his wife joined us for the weekend
They live just north of San Francisco and flew down to South Carolina to see Lisa's Mum and brothers for couple of days then drove down to see us for the weekend

Friday we went out for a meal at Cap's on the water

Click to enlarge pics

Julie

Lisa and Peter

Julie and Lisa

Peter and me gurning

Saturday we went up to Kingsly Plantation and down the road had lunch at the Sand Dollar

In the afternoon we drove onto the beach at Huguenot Park and had a swim in the sea

After a siesta at home we had a meal at Maggianos Little Italy near where we live

Lisa Peter and Julie @ Kingsley plantation

Peter and Lisa at Maggianos

Sunday we had a stroll along Ponte Vedra inn and club beach (where Peter and Lisa were staying) followed by lunch in the golf club

Peter and Lisa then left for Orlando for their flight home tomorrow

Julie and I relaxed on the beach for the afternoon

We had a great weekend

Lisa and Peter

Callow Saints

One of my fellow UK patients Seb from Aylsbury finished his treatment this week
He is a very keen musicians and has a band called the Callow Saints
The Proton centre organised the use of an auditorium within the hospital grounds
Amps and drums were borrowed
They sounded great

Click to enlarge

Seb

Callow Saints

My youngest boys back home - we miss them so much

My youngest boys have been away with my sister Anne and my mum for the past week or so in Uttoxeter for a week and then Ely fof a couple of days
Anne does dog agility with her 3 dogs
She sent me these pics of Joshua and James

Click to enlarge

Treatment 26 - Out with the old in with the new

Today saw a change in my treatment - For the past 25 treatments I have been having 6 proton zaps.  3 on the left and 3 on the right side of my head

These pics show the rough shape of where the protons have been sent into my head.  As you can see it covers a large area. This is to ensure that if the Chordoma had spread in the bone it is killed off
This is not burning of the skin from the proton beam but rather agitation of the blood vessels under the skin causing the redness.  I have a matching mark on the other side
I use Aloe vera leaf extract and Nivia to keep the skin moisturised

The next 17 treatments are more concentrated directly on the tumor area

Therefore the 6 brass apertures and 6 compensators are disposed off (the brass ones are melted down and reused)

One of the old compensators

One of the old apertures

I have 6 new apertures and compensators with smaller beam areas

The fields they use and position on my head has also changed 2 on the right and 3 on the left and 1 through the back of my neck
The shape mark on my face is already beginning to shrink

Seaworld Orlando

For the weekend we went to Orlando - Specifically to have a look around Seaworld

There are many parks in Orlando, Disney, Universal studios etc - most of which consists of lots of rides.  Something specifically I am not allowed to do (not that I would particularly want to anyway)
Plus those places are mainly for kids and not having the kids with us if we went there it would not seem quite right

So we thought a happy medium was to go to Seaworld which other than the afternoon rain was great. It is more shows than rides

Talking of shows the best place we have ever been to for shows is The Grand Park of the Puy du Fou in western France. No sea creatures but plenty of other animals, birds and action - worth a visit if you are in the area

A few pics of Seaworld.  Click to enlarge