Monday, July 25, 2016

Here we go again......

There are constant and inevitable reminders of the fact that, yes, all of this really happened. 

My body is scarred and in several places grossly misshapen. 





My girls know a lot about cancer for their own good and I realised that although I had grown comfortable with discussing cancer at times unaware of them in ear shot.  There are medical bills that regularly remind us of what impacts on us as a family and I still need seizure medication as I have a scarring on my brain from previous surgery and regular appointments, scans, bloods and the unknown is there.  I can’t forget these things. I feel guilty that I brought cancer into our family and my heart breaks when I see how much it effects and places pressure on Lisa. She is a strong, amazing and resilient person……however my guilt is tearing at me by bringing cancer into her life and our girls. No one deserves this, especially my wife and three girls.


Being reminded that cancer was in our life reoccurred once more. The past month has been brutal, emotional draining and sitting in limbo is an easy way of describing it.

After my routine 3 monthly CT scan, it revealed that my only tumour that has been in my body for a few months, in the lymph nodes near my right lung had grown from 1.3cm to 2.6cm. This was it……time to remove this sucker….my oncologist decide to get this removed. My hesitation was evident, another surgery, recovery and time in hospital away from my family. 

Lisa and I met with the surgeon, I truly went in thinking 'open me up and cut the sucker out and clearing me of melanoma once and for all'. He needed to cut small piece of rib, access the tumour and take it, along with the top lobe of my right lung. This would see me lose 10% of my lung capacity. This truly messed with my head. The surgeon organised for me to have a PET scan to determine the exact size of the tumour and how close it was to my lung.

The reminder was here……I get scananxiety with all scans, but PET scans are the worst anxiety of them all.

In reality the PET scan was perfect timing, as the results revealed a NEW 1.3mm size tumour in my Adrenal Gland near my left Kidney.

My oncologist and surgeon reassessed things as a result of the latest scan results, it was decided to not have surgery and start a new treatment…..Keytruda.


It was now a new word and immunotherapy treatment I needed to learn about……..learning more about what was about to happen once again, educating Lisa and I on melanoma’s new immunotherapy  treatment once again….extending our oncology education and vernacular.

The relief of not having surgery was good, however, it then reaffirmed that Dabrafenib was no longer working and my body had worked out a way of beating the drug to bring back the cancer. Knowing that I have options out there is very good and well, but it still resonates that I have incurable cancer…… you then question;

"Will I see my girls grow up and achieve all the things in life that I wish for them?”
"Will Lisa and I grow old together?"
"How will the family cope with all of this?"

Dabrafenib had been my “miracle” for just under 3 years, longer than what specialists thought it would last.

Keytruda was a new treatment and now on the Government PBS. For me it involves spending an hour, every three weeks having an IV placed in my arm for the hour and then life as normal for the day….side effects listed included: the usual, rash, stomach complaints, fevers, constipation, fatigue and hair loss.

One week in I was feeling ok…..none of the mentioned side effects had occurred, however bruising and pain in the kidney area near the tumour….the worst pain I have felt…..What keytruda does is boost your T-Cells (immune cells) to hit and target the cancer/tumours…..apparently it inflames them and they get angry. I am hoping this is what is happening.

My pain could only be controlled with Panadol or strong panadine….not Anti-inflammatory meds.





Fatigue was kicking in….I have kept working full time, however my passion to cycle and desire to cycle 220km a week has taken a back seat…..this is a different sort of pain…..to miss the bike and physical exercise is an emotional toll on me. I love riding, but love it even more with mates that keep me riding hard and mates who get my bike back on the road to fitness and recovery. 

Whether it is cold, wet or foggy, I love it. 



After the second week since treatment my pain was managed and I didn’t feel as bad. It is a dose every three weeks for two years. Fingers crossed it does its job.

Before all of these dramas that melanoma and cancer brought into our life….. the weeks before were full of family birthdays and time of celebrating. 

Kalita turned 7, and I turned 41…..and it was on my birthday that the oncologist rang with the news that spread in disease has occurred. We even attended a Disney on Ice Concert as a family during the school holiday. 



The girls are all doing well and Lisa is somehow keeping everything in order.

I am working hard with the new job, meeting the new challenges with excitement and it is still an amazing job. On this note, CompNow who; I work for have been very supportive of what we are going through. The travel is long but very rewarding, I do miss the family when I am away. 




Cancer makes everything real…..I have moments when I think about the next phase of a life without cancer…..I visualize life without all of this and my health being 150% normal. The girls growing up and graduating from primary, secondary school and me walking each one of them down the aisle at their weddings, Lisa and I growing old, and somehow I maintain my cycling to complete more Tour De Cure rides to raise money for cancer research.

Hoping we have a light at the end filled with positivity.



REMEMBER TO HUG YOUR LOVED ONE'S XXX


8 comments:

  1. Oh Nathan, your strength and resilience never cease to amaze me. Your love for Lisa and your beautiful girls is tangible. Sending lots of love and prayers.

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    Replies
    1. Thanks so much for your kind words. The love is what is getting me on Track. To see my girls grow up is what is making me get into better health.

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  2. Hi Nathan, I have been watching your blogs over the years very carefully and I was so glad that you were going so well on Dabrafenib. Keytruda is meant to be amazing so I hope this brings you the response that will last. Were you ever on the combination of Dabrafenib/Trametinib? The reason I ask is because my husband has been on the combo for nearly three years now and is NED. Julie

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  3. Hi Julie, thanks for reading and following my blog....I wasn't on a combination, just Dabrafenib and it was doing amazingly well, just had small growth that took me onto Keytruda. Since being off Dabrafenib, I have had some brain tumours removed that has left my left leg with minimal movement. Liking it to a stroke. Dabrafenib was doing some great work on that brain, mets, now its rehab time to learn to walk again. Fingers crossed, no more set backs. I hope that your husband stays NED for a long time to come. I was NED for about 18months or so and plan to get back there soon. All the very best.

    Nathan.

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    1. Wishing you all the best Nathan. The drugs are all pretty amazing and hopefully after this setback you will be on the path to recovery. Thinking of you and your family at this time. X

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    2. Wishing you all the best Nathan. The drugs are all pretty amazing and hopefully after this setback you will be on the path to recovery. Thinking of you and your family at this time. X

      Delete
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