Wednesday, December 4, 2013

An Update on my Melanoma Journey:

Life throws us challenges.

How did people go with the challenge I left you in the last post? Keep the challenge going.

Just this week I had a check up, which outlined that my blood results were excellent. They indicated no further progress. The other good news from this appointment was that the medication I have been on (Dabrafenib), as a compassionate patient since December 2012, has now been listed on the Australian Government’s PBS, which means the medication/treatment is proving successful and allows other melanoma patients access to this medication/treatment.

My oncologist said I am looking fit, healthy and can’t see any progression of the disease happening too soon. He mentioned that if I do progress, I would be placed on a trial called PD-1 and this trial could run for the next year or two.  He feels that I won’t need the trial in the next 12 months or so. He is that confident in how well I am doing and cannot believe how much I have achieved this past 12 months.

Last weekend I raced in my first my first criterium bike race in over a year. To say I was excited is an understatement. I finished well and have learnt a few things….stay off the front to conserve energy…...also 'anything is possible no hurdle is too big'. My riding buddy Matthew Collins came along to the race as support has took the photos below. I have been riding well and clocking the K’s up……doing an average of 150k’s a week. I have also registered for the Tour De Cure ride in 2014, again as a guest rider for two days. Donations are welcome head to this link: Tour De Cure 

That's me at the front.  
video
My again at the front. 

I am truly feeling great and probably need to slow down a little. Like everyone I am looking forward to Christmas with the family and celebrating another Christmas and enjoying this time with loved ones. I especially take this Christmas as special…last year some people probably thought 2012 Christmas was probably my last one….however I am here for this one and many more to come.

Christmas 2012

My Melanoma Support group meetings have been going really well. My parents have been to all meetings. We’ve had a number of people and their partners attend also. These meetings have been held at my place of work on the second Wednesday of each month. 

I also presented my Melanoma Journey to the Middle School students and staff at my school. Another wonderful experience....an opportunity that I thoroughly enjoyed.

I also cannot believe my two eldest girls are finishing their first year of school and kinder. This is something I hope to continue to see in the future. I hold onto these moments and never let them go. Moments like these should be treasured whether you are ill or not.

I would like to take this opportunity to thank everyone for their support over the past year and Lisa and I wish you all a Merry Christmas and Happy New Year. 

I have scans first week of January.


Remember to hug your loved one's. Love to all. x

Wednesday, November 20, 2013

A few emotional moments and reminders.


It has been an interesting, busy and emotional week or so.
My support group is going really well and I am enjoying the opportunity to host and share ideas of health and motivation.

In the past week a mate of mine from my school days, his brother Damian ‘Dards’ Williams a fellow Stage 4 Melanoma Patient, passed away. He was only 32 Years of age and battled this disease for the past 14 months, after 10 years ago having a primary removed. A lovely guy married for 12 months or so.

I met him for coffee a few times and discussed his treatment and health. He and I were on the same drug and things looked good for him many times during this period of 14 months. However, eventually it went pear shaped and the dabrafenib didn’t work anymore for him.

I was very saddened to hear he passed. Many reasons, young married guy, and a connection we had with school and Melanoma, same treatment. His passing has hit home with me…..Is this going to happen to me? Will dabrafenib not work one day? I do have Plan ‘B’ there if its needed. This is reassuring!

I did attend the funeral which was an amazing service! Aidy, his brother spoke very well about Damian. My dad came with me as support and I am grateful for this. I was fine, not emotional or thinking negative at all….I did have times of self talk and thinking ‘I am not going yet, I am here for a long time, not a short time’.

Times like this again recalibrate your life and make you appreciate and have gratitude for what is around and what I have. I am thankful for my family, Lisa, the girls and my ability to do the things I love.

Another emotional time was the news that a parent at school who has cancer received some bad news…. Her cancer has spread. I am close to this family and have taught one of their children. I am sending all positive thoughts to her and want her to know she has a lot to live for and I think the world of her as does her family and community. Stay strong and do everything possible to heal and fight. We need you here.

All of these mentioned times have made me more motivated to fight and keep positive. Life sends us challenges and we need to tackle them as best we can. Some challenges we don’t need, but this is where the fighting spirit rises to the top and gets us face to face with what is important.

I was talking with my mum and dad the other day (my parents are amazing people and great support for my wife, girls and I) they mentioned that people they bump into many people who ask and seem to think that I am cured….because I am working, training and look great….I wish this was true…I am not cured and yes I do feel great and am at a fitness that I am happy with…my health is as good as it will be until I am cured or in remission.

It is hard to explain how I feel about what people think. I feel at times people must think I am fraud or putting it all on…..this is not the case. I have been dealt this hand in life and dealing with it my way….head strong and with determination to win.

I am training well, riding a lot and hitting some solid rides with Matty Collins my mate. Running is continuing along with hitting the gym more frequently….just to get the arms and chest back.  Lisa and the girls are well, clearly we are all looking forward to the end of the school year and another Christmas. I have bloods in two weeks and will keep you posted.

I have a question for you all and a challenge…..What are you most grateful for in life? When you are out and about take some time to stop and appreciate what is around you or those around you. Do something kind for a work colleague…..a small token of appreciation….a coffee pod, chocolate, flower, note something little. That is your challenge.

In our busy lives we forget to stop and breathe the air and smell the roses.

Try hard to not sweat the small things.


Remember to hug your loved one's. Love to all. x

Friday, November 1, 2013

A Reminder....

A Reminder....

It’s been a while since the last post. I am sure you will all agree that Lisa’s post was sensational and very heart felt. Sunsmart Australia actually added it to their website and monthly newsletter. Thanks for the post my beautiful wife.

When I read it, I didn’t realize how bad I was or how disjointed from the world I was physically and emotionally. It made me again realize how important life is and why we all shouldn’t take things for granted and love the one’s close to you…especially your family.

It was also Lisa's Birthday in October and last year I missed it (with reason) and I was definitely going to make it up to her this year. It was a great day had at home with family and friends. The girls made a cake for Lisa with her help. They used special drawing pens to decorate it. Thanks to all those who helped. 



Love this photo

Cake Decorated by the Girls
Lisa and her school friends
Lisa and her cousin Louise
A lot has happened since the last post. I decided to start a Melanoma Support Group here in Melbourne. Melanoma Australia and in particular Jay Allen from Melanoma Australia gave me all the guidance and encouragement to start this group. My work place Carey Grammar was kind enough to allow the group to meet every second Wednesday of the month at school. This was a huge relief as trying to hire and organize a place unfamiliar to me would have been a challenge.

Our first meeting was well attended. Lisa came along, as did my parents and Jay flew down from Sydney. Scott De Young a fellow Melanoma patient was away with his family and unfortunately couldn’t attend, however it was great to meet his parents and hopefully we meet Scott and his wife at our next meeting. We also had four other Melanoma Warriors there. It was great to meet others and spend time sharing stories and learning about what has worked for each person. Support is minimal in Melbourne for Melanoma, hence me starting this group.

I have also completed another presentation on my journey to a gym in Balwyn (Inspired Fitness). Once again I loved sharing my story and found it beneficial to share what has happened to me and my family…..I did get emotional at times. There is a post interview of the night here:


The girls and Lisa are well……the girls are growing up fast……I cannot believe Ariella’s first year of school is almost over. Lisa is, as always-busy being a mum and businesswomen…. And somehow finds time to train. She ran an amazing half marathon last month in 1hr49min. I’m very proud of her achievement. I was very happy to run the 10km at the same event with a mate Matty Jones (no relation). I finished and ran 43min37sec. Nowhere near my PB of 38min. But happy to be competing!
It was also great to see my younger brother Reardon there to watch me finish.

Finished
Matty and I. 

Lisa and I
My gorgeous and amazing Wife..
I am training hard… still riding a number of times a week and had a few solid hit outs with friends in the past month…roughly riding about 135km a week, feeling strong and fit. Running is being maintained. I am hoping to race a Crit. race (cycle race) this weekend. Keep you posted. Lisa has entered the City2Sea run in Melbourne. I’m sure she’ll run well!

Work is extremely busy. But fun! We have reports to write….class lists for 2014 to sort…..end of year concerts, assemblies. Only 7 weeks till the end! I cannot believe I have worked a full year with my illness there in the background.

As for my cancer… well I was reminded that I still have cancer this week. I felt very ordinary in the head all week and wasn’t due for scans until Monday….however my head was sore and annoying me. I felt like there was a brain tumour present. I decided to call my oncologist and organize my scans to be moved to this week…he was on holidays, so I spoke with his Locum and she advised me to have scans moved to as early as possible.

My head was aching and I felt strange….I rescheduled and was just mentally preparing for the worst… the morning of the scans, I left for work preparing my mind that I’d be in hospital that afternoon….as I do each morning I hugged and kissed the girls and Lisa, holding back my tears.

The anxiety and nerves are very hard to explain….I worked the morning and headed off around lunchtime to Epworth for the scans…my head was feeling very ordinary and my mindset was not great. This mindset disappointed me. I am extremely positive about this illness and think of good thoughts as much as I can.

The arrangement with the Locum and I was for her to call or text me when she had the results. I went home after the scans and was distracted by Ariella’s School Art Show…a great Art Show. This was a great distraction.

After a morning ride the next day, I went to work as normal.  The phone call I was waiting for came after lunch….Good News…..nothing on the brain and the last tumour in the lymph nodes of my chest has shrunk. Not sure by how much…I will get formal report results Wednesday.

RELIEF for all of us!! I still have a funny head….and will investigate this next week. I think it scar tissue flaring up and causing pain.

This episode has made me feel more aware of this melanoma beast that beckons from within …… I felt like this was a reminder of; ‘The journey is not over and this beast is around… As I say, it has picked the wrong person to hang around’.

I will keep you posted on formal results next blog.

I hope everyone’s well. Enjoy Cup Weekend. 

Finish with a photo of my Team's Success in the AFL Premiership.


Remember to hug your loved one's. Love to all. x






Tuesday, October 1, 2013

12 months on from my wife's perspective.


12 Months on: My Wife's Perspective. 

As promised my beautiful wife is writing this entry from her thoughts and feelings of the last 12 months. 

Also great win by my Mighty Hawks.....Had to add this in. Went to the game and had an amazing time. Thanks.




Well one year ago today our life as we knew it changed forever. When Nathan received a phone all from his oncologist asking him to come in two days early, my heart sank. My suspicions were confirmed. In the lead up to this scan, Nathan hadn't  been himself and I remember thinking to myself if these next scans were clear, he was going to cop an earful from myself about his behaviour. To my horror, the scans revealed four brain tumours in the frontal lobe of his brain (the area controlling behaviour), which explained his changes in behaviour.....and meant I couldn't yell at him!!!!!

In the proceeding one to two months, life was incredibly hard. To see Nathan go from a fit and healthy husband and dad, to someone who lost control of his body in just a matter of days, was frightening. One of his tumours bled and this resulted in Nathan losing control of one side of his body. He lost vision, he couldn't move his arm or leg, he lost all independence. This meant he couldn't walk, feed himself, bathe himself or even toilet himself. Just days before he was riding 100km+ and now this. It was heartbreaking. His zest for life had vanished...what saddened me most was that he even stopped asking how our beautiful daughters were. I knew we were in a bad place and we had a long road ahead of us to get through it. 

I was torn. I wanted to be with the love of my life, the man of my dreams and be there to help him through this extremely tough time, and for the majority of this time I was. However, at home were our three gorgeous girls, then, five, three and one, wondering why their daddy was in hospital for so long and why their mummy wasn't around for them either. Our family and friends were amazingly supportive and helped us out in hundreds of ways. I was in the hospital the majority of the day, then I'd come home to have dinner with the girls and get them to bed, then I was back in the hospital once they were asleep. I was exhausted, running on empty, but I wasn't the one lying in hospital with this horrible disease, so I had it easy! 



Two brain surgeries later and things began to improve. I began to see that fight and drive that Nathan is famous for come back into him. Day by day his movement returned....and thankfully his ability to carry out everyday tasks. His ability to show emotion and interest in the people he loves most also began to return which was also a huge relief. Ariella, Kalita and Zahlia were able to interact with their daddy again...everyone was much happier.

Over the next month Nathan fought hard and recovered well and at last he came home. We were all so relieved and happy to have daddy home and enjoyed every moment together....until we suffered another blow when we found out Nathan also had a bowel tumour. So it was back into hospital and surgery again. I felt like this  was spiralling out of control, out of our control. Melanoma is a horrid thing, but again Nathan fought hard and before we knew it Nathan was back home again. 

We have Dabrafanib to thank for being here twelve months later. This drug is a miracle drug. I do believe though that it would not be working as effectively as it is without the strength and determination of Nath. Despite what he has been through, he is still the fittest person i know. To look at him all you see is a fit, motivated, determined and healthy looking 38 year old father and husband. We, look like a normal family going about our normal lives.

These past twelve months have been the worst of my life, but it hasn't been all bad. Yes we have been dealt an horrendous blow in our lives, no words can really describe how unfair it is for Nath to have stage 4 metastatic melanoma. However, it has taught us some valuable lessons in life and bought us a lot closer to many people. There really is no need to worry about the little things that bother us. We need not worry about what may happen in the future, because it may never happen. We need to appreciate everything and everyone in life. Live life for today as every second that you spend with the people that you love is so so precious and should be appreciated.

We recently returned from a magical holiday in Palm Cove. It was the perfect example of living in the moment and enjoying every moment with the people that you love. Last weekend, Nath's beloved Hawks won the AFL Grand Final. This time last year, the Hawks lost the Grand Final and the day after we had some devastating news. This year the Hawks won, it's an omen I hope for a good year ahead. A positive, healthy attitude is the key to success...success in living life to the full and for longevity. We are going to beat this because Nathan is the most determined, motivated person I know. Cancer has picked the wrong person to reside in. My husband, my love of my life  and my children's daddy will fight this little sucker out of his body. He has done an amazing job up until now, I am so proud of everything that he has achieved in life, but especially in these last 12 months. I love you very much as do your beautiful girls, Ariella, Kalita and Zahlia.



In a word, melanoma sucks. Live each day like its your last, hug your loved ones and please make sure you put some sunscreen on yourself, and your children.

Monday, September 23, 2013

DÉJÀ VU


It’s holiday time for me now Term 3 is done…massive term!

I did say that Lisa was writing the next blog entry, but she will do the next entry.
I am doing really well… we have just returned from a wonderful family holiday in Palm Cove. It was a fantastic break for all of us. The girls loved the time, swimming and mixing with other children at the resort.

Lisa needed this break and I think she was relaxed and has come back recharged.
I have come back recharged also and feel more relaxed.

The girls travelled really well and enjoyed the flight. The trip home was a little different. In the last hour of the flight, Kalita was ill and vomited all over Lisa. The cabin crew were amazing cleaned everything up and assisted in getting rid of the smell. This was the only spoiler of the trip.

It was great to catch up with people I haven’t seen in a while. On the plane I bumped into an old Uni mate Scott O’Keefe who was staying in Palm Cove also. Another old school friend who I do see back in Melbourne was Scott La Faletta and his family. We ended up catching up with them for a few swims, dinner and watched the hawks cats game with them. Lisa, the girls and I also caught up with a colleague Vikki Porter who head to Palm Cove twice a year.











DÉJÀ VU
I don’t believe in rituals or superstition… and I hope it isn’t something that can occur for me….in the next few weeks/months.

I am coming up to 12 months since my terrible Stage 4 diagnoses and to say I have mixed emotions is an understatement…..It appears patterns are following the same as last year and I hope the final pattern doesn’t occur like last year…… Here is the pattern so far that is almost the same as last year: - family holiday same time last year (Different place), Lisa and I are training hard for Melbourne Marathon events, Lisa the half and 10km for me, have been doing some presentations to schools or conferences, the last one is that my team the Mighty Hawks are again in the Grandfinal and I have a ticket again from the same person as last year. Hopefully they win this year…….they owe me one. Also Lisa’s Birthday is coming up. I think you can see why I see it as déjà vu…..and hope the pattern stops there.

I am excited and thankful for all that has been achieved since my diagnoses. I am really thankful each day of how lucky I am to be in this situation and current health and how well I am progressing. I only have one tumor left, compared to 6 or 7 this time last year.  
Reminders of 12 Months ago 
Reminders of 12 Months ago 
My Support and will to beat this disease. 
HEALTH AND FITNESS:
I have been training really well, riding an average of 140km a week with some solid rides and combining this with running 15km a per week and pushing some good times and distances. I am nowhere near the form or fitness of previous years. The Melbourne 10km event is on the 13th October and I am excited to be running this with a good mate Matty Jones…..the aim is to finish and hopefully run under 45min. It is hard to accept this time given my PB for 10km is 38min. But at the Late Great Jim Stynes said, ‘When faced with death your ego takes a back seat’. And this is true. I need to put my ego and former glory running days behind me and be appreciative of actually being able to run, ride, work and spend time with my family.

Melbourne Marathon organises wanted me to do an article for our local paper based on the event theme of ‘Anything is Possible’….. so I decided to it…..the only regret I have is the ridiculous photo that was taken and published for his article….I have copped grief for it and rightly so….see for yourself.
Article in the Manningham Leader Newspaper. Yes a very ridiculous pose. 
What’s next?
I have blood test and results in two weeks…… an educational presentation to a school during the holidays……watch the hawks hopefully win the 2013 premiership…… spend time with the girls……celebrate Lisa’s birthday which I was in hospital for last year and understandably forgot her birthday. This year I want to make it up to her ……. I am also presenting my story a local gym and their members and this should round off a busy month.

DO I HAVE CANCER?
I do have to ask myself….if I actually have Cancer…..there are days when I feel flat and less active….but is this because of what I am doing or my body fighting Cancer and the determination to fight on….. with all I do and how I feel I seriously think life has changed and I know I am not where I used to be…..but the body is slowly returning to its former self……. Fitness is my bench mark for me…..if I feel fit and active I feel the cancer is not there…..and this is why I question, do I have Cancer? It is a mind set that has placed me in this position of feeling really good.

Remember to hug your loved one's. Love to all. x
GO HAWKS!!! 
GO HAWKS!!!