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

Farewell to a fellow brit

After treatment today joined a few of the other British here for a farewell afternoon tea as Sandra had finished her treatment and is on her way home this weekend.  Good luck to her and success in her treatment

Barbara Jean's Restaurant - And a blue moon over the ocean

Julie with Bill and Mary-Ann

Went out for a meal to a "locals" restaurant with our local friends Bill and Mary-Ann
Lovely evening

On the restaurants deck backing on to the intracoastal water

Ponte Vedra Beach moon rise

After the meal drove to watch the blue moon rise at Ponte Vedra beach
We had a lovely walk along the beach
It got a bit too dark to go to far

$5 million ish for these houses

Getting a bit dark - time to leave the beach

Fort Clinch state park

We went to Fort Clinch state park today
On Amelia island just north of fernandina beach
Nice fort
Lovely beach
We saw an Alligator in the wild

Click to enlarge

Week 4....... Done

Yea...another week done

The sick side effect has reduced a fair bit.  Still get a odd feeling but much improved over the week
The taste in the mouth has also reduced
Still find certain foods a real turn off and never really fancy food, but I am eating OK

After todays treatment we went for a late lunch to the River Brewery Company
With a view of the St Johns river
After the meal took the JTA Skyway (you tube vid) monorail to the other side of the river

We had a little walk around the Jacksonville Landings and finally took the river boat back to where we parked


While on the ferry they had a 5 min warning of an impending rain storm.  They dropped the sides of the boat to stop the rain coming in. The heavens opened and they had to shelter the boat under a bridge to protect it from and possible lightning strike

Click to enlarge

View from River city brewing

Storm Brewing

Getting darker

Protected under the bridge

Where has the view gone

All clear just about to leave the boat

Another 'Cracking' thunderstorm

This one went on for over 2 hrs
Lightning flash after lightning flash. Great fun

Had David and Sue over for a meal.  Chicken stuffing and veg.  The yorkshire puds failed due to incorrect flour !

Thunderstorm

We have plenty of early afternoon thunderstorms here which last a few minutes with a huge deluge of rain
We had a tornado drop the other week.  We saw the forming of it to the east of us while we were driving back from the proton centre
Last night we had a huge thunderstorm which lasted for a couple of hours.  A huge amount of rain which stopped the satellite dish receiving any channels
So we watched the storm from our balcony instead

Click to enlarge

Lightning from our balcony

Week 4 of Proton - Tasty - Not

Just about to leave for todays Proton treatment

My taste buds are still not right
Can't stand bread at the moment.  The bread here is quite different to ours although the french bread is tolerable
Breakfast used to be a couple of slices of bread and marmalade - now its cornflakes
Lunch would normally be a sandwich of some kind - now I have a taste for scrambled eggs with ham and onion - lets see how long that lasts
I never feel like having anything particular for the evening meal so Julie surprises me !

I sometimes have cravings for a particular food then when I have it its not as enjoyable as the thought of having it !

Even the tap water tastes bad to me - I have bottled water
I can't find a soft drink that I enjoy the taste off

And everything I eat or drink leaves an aftertaste that takes ages to go

None of this is particularly a problem its just a little annoying
I can still eat and drink - Just don't really enjoy it as I used to

Gone to the dogs

Jacksonville dog racing

Joined a group from the Proton centre for an evening buffet and greyhound racing at the Orange park dog track

We came out $38.20 ahead after 15 races. Picked the winner 7 races out of 15

Our boys picked the first 3 winners and Julie the rest.  I failed to pick a winner

Week 3 ...... done

Another week of treatment over
Still have the same side effects of a nausea feeling plus a bad mouth taste after eating
Appetite not quite the same
A new addition to the side effects is a couple of red patches on my face/neck where they are treating me

Cosy tea rooms, Jaxsonville

Joined a group of other British patients and carers to afternoon tea in the Cosy tea rooms
A lady originally from Palmers Green opened the tea rooms when she came to Jacksonville with her husband
A huge selection of teas.  Scones and cakes
I am not a tea drinker so went with a potato and leek soup with a sausage in pastry and salad. Very nice
Julie went with Buckingham Palace tea and scones

Homesick

Its been over a month here now and we are getting very homesick
We are missing the kids like mad

We try and keep occupied by going out on trips and the cinema etc. Otherwise we would go stir crazy
Our routine is very monotonous.  Dictated by the daily treatment
I think that if we were childless or the kids had already left home things would feel different
As a couple here we would be doing fine
It would be just like being at home with sunshine and a beach down the road

The lack of background noise that the kids give us is one of the missing elements
The hugs and kisses and all the other little things that happen at home

Skype and facetime are fantastic but no replacement

Only 7ish weeks to go

World War Z

Went out last night and watched World War Z
We enjoyed the film

Life's a beach

Took a drive to the Kathryn Abbey Hanna Park and spent the afternoon on the beach

Very hot.  Due to my treatment I am not allowed to put suntan cream on my head or neck area so have to wear a wide brimmed hat and keep under cover
We had beach chairs and umbrella so I kept undercover

Click to enlarge

Offshore wildlife

NO chance

NFL The Jaguars scrimmage

The Jacksonville Jaguars the local NFL American Football team had a pre season open day to show of the players etc
We went with other UK people who are also having proton treatment

We did the full USA football thing hot dog, drink, etc
We had no clue what was going on but was great fun anyway
The stadium had a great atmosphere

Some pics click to see full size

Week 2 Complete

Week 2 of the treatment now complete
Being on the gantry is now quite normal and I tend to nod off whilst lying down on the table



The only issue is that they give you a rubber ring to hold on to across your chest.  If i doze of my grip releases which makes me jump !
I have to try and stay awake as moving is not allowed during treatment

They have velcro straps which I will have to try next week






My side effects so far is a sickish feeling in my stomach.  Food no longer tastes nice.  I always after eating have a bad taste in my mouth that takes ages to disappear
Nothing horrendous but uncomfortable

Maggianos little Italy

We went out for a lovely meal tonight at Maggianos little Italy

The little extra in the deal is that if you order one of their standard pastas you can order another which they give you at the end of the night to take home - Friday night meal sorted