Wednesday, 29 June 2011

The Next Steps

The next steps depend on what the genetic testing shows as the treatment options are quite different depending on whether I have a certain genetic mutation or not. Exactly what the options are, and where they can be done are all still uncertain. However, here are some certainties.
1. I have been in contact with some of the very best people in the world about this, and will contact some more. Money issues aside, I know I can be seen at Mayo immediately and they have a very effective program. I would have to stay there for an extended period of time, as they would treat me 3 weeks out of every 4 (for how many months I do now know). The Oxford group appear to be in direct contact with the lab over my test results as they seem to know at least as much as I do about its status.
2. The Sydney Melanoma clinic is extremely good. That may well be a treatment location option for me.
3. There have been some very recent extremely significant breakthroughs in the treatment of this disease. The genetic testing I am getting done has only been conducted by Labtests once before in this country – an indication of how new this all is.
4. I have yet to speak with an Auckland oncologist about this. Hopefully this will happen very quickly once the test result is known. That said, the Head and Neck surgeon has been in discussion with a couple of oncologists and they are up to speed on my case.

People have often described me as a pessimist. I would look at something to be done and immediately identify the issues and problems that would likely interfere with the success of whatever was being attempted (and then focus on how to overcomes these things). I never considered that to be pessimistic – I always considered myself to be a realist. With that in mind, here is what I want to say. Having done some reading and communicated with some of the best around, there is not a shred of doubt in my mind that I will get better. I don’t think I have ever been more certain of anything in my life than I am on this. I can see me completely well again taking part completely in life pain and symptom free. I don’t yet know the path that I have to take to get there, but I know there are a few of them available to me. I have no time for doubters, I have no room for pessimism.

To all of you that have rung me, visited me and sent me emails, I am deeply grateful – more than I can possibly say. I am so deeply indebted to those of you that have started, and contributed to, the trust fund to help defray some of the costs of my upcoming treatment. The only way I can repay you is to not fail you, and failing people has never been in my makeup.

I know some of you are praying for me – that is a first. I know some of you have shed a tear or two. There are others cheering me on – something that has only happened occasionally for me during some of my sporting endeavours. To you all, I say I will take your prayers, your tears, your cheers and anything else you want to send my way.

A number of you have sent me emails and many have found it difficult, some probably impossible, to know what to say. To you wonderful email writers, thank you. Even if I did not get around to replying individually, they all meant a lot to me – please keep them coming. To those who have not known what to say, you don’t have to say anything except a simple hello. I have had so many wonderful emails with so many wonderful stories, offers of help and encouragement. One line in one of the emails said
“Fight the Beast”. I plan to do that very soon!

Lead up to the Diagnosis

Towards the end of 2010 I noticed a lump on the back of my neck. Nothing sore, just a lump. My family wanted me to get it seen ASAP, so I went to my GP who was convinced it was just something called a reactive lymph node. Happens quite frequently – seems if you get a small cut or infection nearby your lymph nodes can just swell up a bit. It had all the signs of being a reactive lymph node. The strategy was to wait and come back a few weeks later if it was not going down. The guy that cuts my hair also commented on the lump in my neck and said he often sees people with lots of lumps in their neck, and then they just go away. So all-in-all something more common than I thought and nothing to worry about.

I eventually went back to the GP, and there was nothing new to change his mind about his initial diagnosis. Just to be sure though, he recommended getting a fine needle biopsy of the site in a few weeks if it still was not going away. I arranged an appointment for this and the specialist looked carefully at my neck and said that it was just a reactive lymph node. I think there may even have been more than one lump by now but that was of no concern at all to him. He said he was unlikely to be able to get much from a small needle biopsy, but if I really wanted him to try he would give it one go. To me that was diagnosis confirmed, and so I left.

I then began my sabbatical and associated travel. My most recent trip was a 7 week excursion to the US and UK connecting up several visits and conferences. I left on April 14th with my son who stayed with me for the first two weeks. Between work commitments, we managed to see the Grand Canyon, catch a couple of days skiing in Salt Lake City and bike around San Francisco. I found it very uncomfortable wearing a ski helmet due to the pressure this put on one of my neck lumps, but otherwise no problems at all. Another lump, more visible below the hairline than the others, had begun to appear, and I decided it was time to be a bit more aggressive about getting something done about them when I got back to NZ.

During the middle part of my trip in the US, I began to feel a bit of nausea after eating, and part of my gut would ache a bit. The US is not known for its small meals and I just thought I was overeating and also eating at times my body wasn’t used to (due to the travel), so I tried harder than normal to eat as best I could.

I met up with my wife and daughter in London for 12 days towards the end of my trip. My son was now staying at home on his own for the first time in his life, which was great for everyone, and we shared delightful emails between us on his experiences running the house. I had a number of work commitments in London, but Patti and Xanthe really enjoyed touring the city together, and I would catch up with them in the evenings. My abdominal discomfort was present just about every day, although I was generally symptom free in the mornings.

On my way back to NZ, I was to spend a few days with a work colleague in Irvine whilst Patti went home to NZ. Xanthe stayed with me and greatly enjoyed playing with my colleague’s daughter. I felt incredibly lethargic during this visit but put that down to accumulation of work and jetlag. Whilst in Irvine I rang NZ to get an appointment with my GP. My gut discomfort was also present most of the day, particularly after eating. I played amateur doctor with my colleague and his wife and a gastric or duodenal ulcer appeared to be a possible explanation for my gut symptom.

I saw my GP on Friday June 6th and explained my symptoms. He expressed his disappointment that the lab had not done a fine needle biopsy and he reordered one of these. This time it would be done – I was not to leave until the lab did it. He also suggested I get an endoscopy done – basically a camera stuck down my throat to see what was going on.

My fine need biopsy was done on Wed June 8th. I remember well the doctor telling me that what she had extracted were not lymph cells, “so that is good news”. When asked what they were she said the only way to be sure was to have them removed. In hindsight I think she already knew.

I saw my GP again on Thursday June 9th. I had some good news. I had obtained approval to get the endoscopy done privately as it was something that had occurred to me whilst overseas and thus covered by my medical travel insurance. I would thus not have to wait too long for my endoscopy. His comment to me was “I am afraid I have some bad news”. On the computer screen was the report from the doctor who did the fine needle biopsy. The words that stood out to me were “metatastic melanoma”. I told Patti that afternoon.

I saw a Head and Neck surgeon on Friday June 10th who fitted me in, as a matter of urgency, to his already busy schedule. We had to get an urgent PET CT done to see whether the disease was localised to the neck, or had spread internally. As I have learnt, of particular interest in this disease, is the location of the primary site, and despite inspecting me carefully, no primary site could be found.

My endoscopy was performed on the morning of June 15th (done in the public health system, thanks to a cancellation from another patient) and a single polyp in my stomach (“likely melanoma”) was found. My PET CT was performed on the evening of Thursday June 16th (it was a 4 week wait for the scan in the public system, so I paid what was necessary to get it done faster). Whilst awaiting clearance to leave, a friend and medical specialist who had been waiting for me during the procedure, came and told me that I had Mets in both sides of my liver and some in my lungs. The worst had been confirmed.

On the morning of June 17th I saw the entire head and neck team at Auckland Hospital (21 people in the room with me at once). Removing the neck nodes was now not a priority – we must attack, with drugs, not surgery, what is inside me. The consensus seems to be that the primary site of the melanoma was in my stomach and it was developing inside me before it became visible on my neck.

On Monday June 20th, the Head and Neck surgeon whom I had first seen took out one of my neck nodes and I delivered it to labtests for something called BRAF testing. This is a genetic test, the results of which will determine the next stage of my treatment. As I write this the results of the BRAF test are not yet available. It took most of the week to get the sample to Australia (where the final testing is done) due to the ash cloud which had delayed some flights. My sample was still awaiting clearance through local customs last time I heard (Monday this week).

Last weekend, I broke the news to Zeke and Xanthe. Up to that point, very few people had known, as I had wanted to protect my kids for as long as possible. Noone wants to cause their own children pain, but this was unavoidable. I then sent out an email to a number of people informing them of what was wrong with me.


I am a 47 man. I never smoked, never drank and my only two vices were a fondness for sweet things (cake and chocolates) and diet coke. Some might say I am an endorphin addict since I have always enjoyed exercise – the tougher and harder the better. I am a lifetime member of Les Mills and regularly attend a couple of the hardest circuit classes around. I have built a small gym in my house and outfitted it with a weight cage, cross trainer, rowing machine and a bike on a wind trainer. Most mornings I will spend about an hour down in my gym on one of the cardio machines, watching TV at the same time, all before going to work. A good day will see me train both in the morning and at night. My perfect start to a weekend day is to get up before the family and go and watch a game of rugby or league whilst trying to bike or set a new PB on my cross trainer.

I am married to an amazing women Patti who I first started going out with 30 years ago whilst we were both in the same senior year of our high school. She is unbelievably witty, charming and a delight to be around. Most people that meet us wonder how I managed to get someone so great. I don’t believe in soul mates, but if I did, she would be mine.

We have two children. My son Zeke is going to be 17 later this year. He has inherited much of his mother’s wonderful personality, but there are some of my good bits in there too. We are still a very crucial part of his life and he keeps us very engaged with all his sporting and academic activities. He has found a perfect balance between all the demands of someone who is good at lots of things. It is wonderful seeing him going through his life at this stage, and we enjoy so many laughs together. I could not imagine a better son.

My daughter Xanthe is 10 and she has to be one of the sweetest people to ever walk this earth. She is so caring, especially with young children around. I don’t think she has a mean thought or cell in her entire body. I imagine this is how her mother was when she was 10. There is a very strong bond between Patti and Xanthe and they play and laugh together like two best friends. It is a joy to watch.

I am an academic and have just finished doing 3 years as Head of Department (HOD) and am now on sabbatical. I work in an amazing gem of a department with some great people. To me the department is like an extension to my family. One of the true pleasures I get out of being an academic is helping other people and this was something I could do more effectively whilst being HOD. I truly enjoyed seeing the achievements made by the various staff within the Department. I remember smiling to myself for days when I had heard about certain promotions and new appointments. I also greatly enjoyed interacting with the students and our Department is small enough that it is possible to get to know the students very well. I still have contact with some of the students I taught or interacted with 20 or more years ago and on a recent trip to the UK one of my highlights was meeting up again with two former students from one of the earlier classes.

On my research side, things are going incredibly well. I have a fantastic group of postdocs and graduate students, all different but all working so well together as a team. They are also like part of the family to me. My group is well funded, having secured a multitude of grants, and we are at the cutting edge of what we do. So many studies/experiments/simulations that are being done by them are true world-firsts. The publications/conferences etc are queuing up out the door. Far from peaking, this work is actually in its infancy. There is so much more we can and need to do and I can see so much opportunity for us. I need my group to double/treble/quadruple in size if I am to keep up with all the opportunities that I can see before us. This little gut research group of mine down in NZ has made a big impact on the world scene, and we are being noticed.

Life is so good.

Or at least it was until 11.20am on Thursday June 9, 2011.