Wednesday, May 22, 2013

7 Months On.....

My scan this week Monday 20th May had me a little stressed for the two whole days I had to wait for results. Wednesday came around finally, but I had to wait all day for news, I figured no phone call must be good news. The morning of the results, I did my usual Wednesday ride with Matthew Collins, 35km loop. We froze as it was about 2degrees. To start the day I thought I'd entertain Matty and those at the traffic lights by trying to clip into my pedals and turn the corner at the same time. Not a good combination of gross motor skill movement. BANG!! Fell off side ways, Matty was laughing his head off and this continued until we parted ways. I am fine, bruised hip. Back to the Scan..... it was ok, however, once they finished they asked me to hop back on the bed, as they needed to re-scan my liver. Their reason was because they needed a better image…… well call me paranoid, but Stage 4 Melanoma patients take these comments as if there is something wrong.
About to leave Benalla during the Tour de Cure ride earlier this month.
As Lisa drove me to the clinic I was quiet with nerves, Zahlia our youngest was in her seat talking away. The results came back.... and as one of my friends said to me.... 'they (the results) are a bit of a mix bag of lollies’. You'll understand why..... I was very anxious about these scans for reasons mentioned. I feel awesome and this includes my mind. The results showed two tumours present that have been there since this terrible beast mutated back in October 2012. One tumour is the same size as the previous scan 13mm, this is in my bowel area, the other is 18mm and grown 3mm since last scan, it is in my chest area not in or on the lungs. Here is the ‘mixed bag’, can’t say this made me happy to hear. The good news why they re-scanned was just that a re-scan and all is fine with my liver. No new tumours present anywhere in my body, very happy about this.

The brain is all clear and this pleased the oncologist and the rest of the results did as well, bloods are pristine. I would have loved NED to be said by my oncologist (no evidence of disease) but I'll take the results I have. Lisa my beautiful wife is extremely happy, this is a guide as to how I should feel. She has been amazing and this week she is in party mode again with our youngest turning 2 this coming weekend.
Zahlia our Youngest, who turns two this weekend. 
Generally my health, positivity and happiness are great. I am working as hard as ever and presenting at an E-learning Conference in Melbourne this weekend.

I have been riding an average of 140+km a week. For me this is a sign of moving forward from the beast the beckons within. I give my girls a huge hug and kiss each night and I thank whomever for what positive things that are happening to me.

If and when the Dabrafenib drug stops working the oncologist has Plan ‘B’ ready to go and this is the Yervoy treatment which isn't on the PBS yet ($120000 for initial treatment), but hopefully it will be by the time I may need it. My oncologist did hand us the Yervoy information booklet, I have read some of it. But keeping the rest for when needed, staying positive and working with what is happening now. The handing over of the booklet alarmed me…. Why is this being handed to me? Does he know something or is he keeping something from me? I walked to the car after the appointment reminded my inner self that this illness I have, is terminal and one day the drugs won’t work. But healthy mind, healthy body. 

Many unexpected things are heading my way as a result of my illness. I have been invited to talk to a school group about resilience, determination and my journey so far. This is at a school where an old colleague of mine is Head of. I am looking forward to completing this presentation. Given I am still not driving, my lovely wife will be taking me out to this school. This will be a nice time for Lisa and I to spend chatting and enjoying each others company, I might even annoy her along the way with my iTunes play list she dislikes! 

I am also looking forward to meeting and supporting a Facebook friend, I have befriended Scott De Young. He is a young father of three who is in need of the drug Yervoy. He has Melanoma Stage 4 similar to my illness, but unfortunately he cannot take the Dabrafenib Medication. If you haven’t heard his story or would like to support somehow click on the link.

My wife and I want to support Scott and his family by sharing our stories and journey's.

I am keen to race again soon, either crit race (bike racing) or duathlon’s. In the coming months my goals are to keep healthy and stay positive in all ways, support Scott De Young and present about e-learning and education at a variety of Conferences or schools. Spend quality time with the girls and my gorgeous wife and enjoying Zahlia's birthday. 
‘Attitude is everything’

A quote that was sent to me by Janine De Paiva
‘With the right attitude, greatness can be achieved and a cure for Cancer can be found.’

My gorgeous wife. 

Friday, May 3, 2013

The Tour de Cure Ride finally here.

Words are going to be hard to describe my recent time with the Tour de Cure Ride. Raising Money for Cancer research. For those of you who might not be sure but one of the dads, Dennis Gentilin from my school was involved in the Signature ride this year completing The Tour de Cure Signature ride, 1540km in total. I was invited as a guest rider for stages 6 and 7, 325km total.

My wonderful father, Michael Jones drove me up to Bendigo to meet the peloton for briefing and stay for the two nights to ride Stages 6/7 (Stage 6 = 190km). 
Officeworks team I rode with.
My wonderful dad who drove and supported me for the ride, superstar!
 As part of the tour each night the riders have a community dinner. On this night we had a dinner at a pub in Bendigo. At the dinner, category jerseys are handed out and a reflection of the day is shared with the group along with handing a $5000 cheque to the local Centre for Cancer treatment. This amazed me, at each town or city they stopped at this was done. Phenomenal!!!

Officeworks team member Martin Duffy was hosting the night and asked me to share my story and journey to date. This I did find easy, but at times emotional. The room was dead silent and I think I was accepted into the Tour Groups as a cyclist with Cancer, before a cancer patient who rides. Martin and Dennis gave me a lot of confidence and comfort in being apart of this tour.

What I experienced on this tour is as I said earlier, hard to explain in words. The group and Tour de Cure organization was a well-oiled machine from day one to the end. A Kitchen van follows the peloton each day to every town to cater supply food for the 60+ riders and support crew breakfast. A long with this the Vittoria coffee van follows us, we had at our disposal free coffee at each stop. Support vehicles rear and front for the two large pelotons. Radio mikes for two riders in each peloton.

I was riding the two days and had hit day 6 of the whole tour, I was riding with the Officeworks team and this was thanks to Martin Duffy at Officeworks.

Sean Young and his team at Peak Cycles in Heidelberg recently serviced my bike. Sean has been an amazing support for me with gathering generous donations from many walks of life. Whilst on this note thanks to those who donated! My target was $3500 for cancer research and I achieved $3850. So again thanks to all involved.

My journey on the bike was about to begin. Day 6 required us to be at Camp Hill Primary school for breakfast and be part of the back drop for Channel 7’s Sunrise live cross, as Mark Beretta was part of the ride and needed to fulfill his media duties for his sports report on Sunrise.

We had a wonderful breakfast and once this had ended we were required to host the Tour de Cure School presentation about; being healthy, being fit and being happy to prevent cancer. It was a  great presentation completed by all involved. We rolled out as part of peloton 1 for a 190km journey and a time trial (TT) at the 57km mark for 17km. This was fun more on this later.

Clear skies and very brisk air temperature, greeted us for the start of the ride. Perfect riding conditions really. We rolled out at 9am and headed north to Benalla. I was anxious, but very excited. I clipped in and high fived the students from Camp Hill Primary as I headed out of the school gates.
Team photo. 
Local Press photo taken at Camp Hill Primary. 
The lead car led us safely through Bendigo and got us rolling on the road. The pace was surprisingly a moderate pace of about an average around 30km/h. I was sitting middle of the peloton and feeling good. The weather was magic and the temperature was warming up, the only thing that gave us a challenge was the crosswind. I forgot to mention that on this ride we all were wearing pink jersey’s to commemorate hitting the $10million mark for the 6 years of the tour starting. AMAZING effort! As a father of three girls pink was a colour I am used to seeing and evening wearing. Photo below.
Rolling out of Camp Hill Primary in Bendigo 190km Day

Lovely in Pink. 

Rolling out and ready to go.
The 57km mark arrived very quickly and the teams TT were on. We singled up and rolled off the line, taking turns at the front. I was feeling great and this was evident when I hit the front for my turn, my fresh legs powered forward and the team called me back to slow the pace down. Not sure were we placed over all, but what I do know is that we (Officeworks) had an amazing time riding together and rotating turns on the front. At the end of the TT I had to pinch myself and see if this was all real, because again I was achieving things that I really shouldn’t be doing given my illness. Once again I felt like an athlete again and not a melanoma patient. The joys of riding and being fit again! My worries had seemed all gone.
Lunch followed the TT and then we hit the road again heading towards Benalla. The pace picked up once again at times hitting 38km/h, I felt very good still and my legs still fresh.

Our roll into Benalla was late, but I felt I had achieved half my goal of riding two big days. Dinner was at the Benalla Bowls club. Dad and I sat down and enjoyed the company of fellow riders sharing stories from the day. The banter and mate ship was very evident.
Don't be fooled by the blue skies, it was freezing. 
Day Two was 140km Benalla to Albury. Both stages were ridden in perfect weather conditions, a part from the brisk starts. Surprisingly my legs felt good. A little tender, but ready to hit the day. Each peloton ride I have ridden next to a variety of people sharing stories of their lives and this was a great way to meet people and share my journey with them.
Dennis Gentilin and I
This stage ride was well ridden by all and I wished I had more time to ride with people. What do I take from this amazing accomplishment and Tour ride? Well no matter how ill you are or what challenges you have things can be achieved. I didn’t think I’d be able to ride two days in a row at 30km/h for more than 100km each day. I don’t feel like I have cancer and I hope those who met me felt a sense of pride in what I had a achieved… I know I feel quietly proud in this recent accomplishment. I missed my wife and girls whilst away and thank them and workplace and fantastic father for driving and being my support for the two days. Thanks again to Martin Duffy and Dennis Gentilin, my short time on the tour was one of the best things  I have ever done. Thanks for the chance to do this. I wish the Tour riders a safe and enjoyable ride for the remainder of the Tour.