Tag Archives: UFPTI

Final proton done!

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Today’s ringing of the bell marks our last treatment and the end of our proton beam journey here in Jacksonville, Florida! 🙂 39 treatments, 73 days so far (although feels like more!) and we are ready to return home to the UK this weekend.

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I can’t thank the University of Florida Proton Therapy Institute’s staff enough for helping us through this long journey.

My backside however is not looking forward to the journey home, I will spare you the pictures of that for now!

Special mentions go to: –

Dr. Ronny Rotondo (Top guy!)

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Karen Lopez-Bunk (Top Lady!)

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Tracy Edwards (Sorry forgot to get a picture with you so website photo will have to do!)

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Bradlee Robbert (Too funny…….for the touuuurrrr)

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All members of staff treating in the yellow room (guys I will be shooting you soon on Xbox Live/PS4!) Matt, Al, Heather – Cold Hands, Morgan, Zac & all the others I missed the names of!)

Justin Pigg (My first Radiologist, shame he moved rooms during my treatment!) The nicest guy anyone could meet….ever!

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Friends we have met along the way (James, Tyne & boys, Bob & Sabrina, Kim, Chris & girls) hopefully friends for life 🙂

Bob Mower (Fellow Chordoma Patient from Coventry, UK) Only person I have ever met with the same condition as me in the same area! we are definatly 1 in a million!

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And last but not least my family, Gem & Lauren have been there every step of the way…..

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Looking forward to a well earned rest and Xmas at home with all the family….hopefully early ish 2015 colostomy reversal & the end (for now) of this incredible Chordoma journey.

 

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Cyclotron Broken Down At UFPTI :(

An extra treatment day was put on yesterday (Sunday 23rd November) to keep up with treatments over the ‘Thanksgiving Holidays’ unfortunately we were called and advised the cyclotron had broken down and was being repaired so no treatments would happen that day 😦

Forward to today (Monday 24th November) and we got a phone call at 08:30am to let us know the machine is still down and they would call us later in the day to advise of timings etc. We received a call from them later in the morning bringing my Doctors appointment forward to today at 13:30 (from Wednesday) during the visit I caught up with a radiologist who explained a leak had been detected and repairs were underway with hopes to re-start appointments later this evening (treating through the night)

Well it’s 21:35 now and we have just heard from them to state no treatments again today 😦

Let’s hope they get back on track tomorrow as today was my only contingency day, 8 more treatments to go with only 7 treatment days before we fly back!

CT Simulation – UFPTI

A bit later today @ 9:30am thankfully!

Had CT Simulation today (including dye) and the body mould made for me, took around an hour or so. Lots of marks put on me for when they line me up on my return in a few weeks! Treatment starts 9th October!!

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Filled up the car with ‘gas’ tonight, $34 from empty (£19!) 🙂

Tried out KFC tonight, what are mash & gravy and biscuits all about? 🙂

First Consultation – UFPTI, Jacksonville, Florida, USA

First Consultation today at 8am! we made it through rush hour traffic and did not get lost!

8:00am Denise Sikes – sign consents
8:30am Karen Lopez-Bunk (RN for Dr. Rotondo)
9:30am Dr. Ronny Rotondo (consultation) Top Guy!

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11:30 Tracy Edwards – Social services
12:00 noon Labs (UF Health Hospital on campus) Bloods

After that we headed back to the apartment for lunch then ventured out to Publix for some food shopping, I did not know you needed a new pair of shoes after each visit to the supermarket here (worn out after all the walking!)

After that we tried out Burger King 🙂 (well you have to try them all!)

Hire Car Pick-Up/Proton Centre Tour – Jacksonville, Florida, USA

Had a lie in today after the travelling yesterday!

Called for a cab to pick us up (all cabs paid for by Proton Centre) and take us across town to Enterprise where our hire car was ready to be picked up, also arranged by Proton Centre. Arriving at Enterprise we were greeted by a very nice lady called Karlyn who did all the paperwork and escorted us to our car, we have a Toyota Corolla for now but she said this can be changed during our visit if we wish.

Drove to Proton Centre (well got lost on the way!) for a tour at 4pm, met Bradlee who showed us around (we were the only people for the tour that day) The centre is amazing, well I guess thats what you get when you have to pay for health care! Tour lasted around 1 hour and there were plenty of times to ask questions along the way. We also met Tracy Edwards (our Social Worker) who kitted us out with a Sat-Nav, Hairdryer & Mobile Phone, also met Judy Taylor Holland (Director, Patient Intakes) for a chat, was great to meet all after the last month or so emailing them!

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Headed back to apartment after working out sat-nav, we got lost once but made it back in the end!

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First meal out we tried McDonalds (original!) Big Mac’s are $2 at the moment! 🙂