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Straight from the horse’s mouth

Thank you Haidee for starting this series of blogs off and for providing a very informative channel. For this blog I want to first follow up on the CRC theme, and I have two more examples.

 

In the area of computer systems and electronics, we use a system called CRC; Cyclic Redundancy Checking, where we add extra bits of data as check codes to go with the data that is either stored or sent somewhere. The check codes are created by a cyclic algorithm which goes through the data and generates a series of bits which is then added to the data that is needed to be sent. Upon reception of data from either communication or memory, the same algorithm is run over the data and the resulting code compared to the stored code that was appended to the data. If there is a mismatch, then it indicates an error in communication or storage. More sophisticated versions of this system have more bits of data added to the stored or transmitted data to allow for minor corrections to be made. So the extra bits of data added are known as the redundant bits because they do not convey any further information. All this stuff can be read up in many information theory textbooks, which obviously most of the world and our politicians don’t read as then they would know what information actually is.

 

Now this CRC system is a lot like how our genetics work. We have extra genes which act as error detection and correction genes, so that when mutations occur, things can be automatically fixed up. This is a very hand-wavy description as I don’t know much about genetics! In my situation, with my type of cancer, it looks like a gene that does error checking and correction in my DNA is deficient. Because of this, I am more vulnerable to developing cancer. So I am a mutant - but not one with special powers! Instead, one that makes me susceptible to cancer. The fact is, we are all mutants as we have many mutations in our genes and it’s probably best we don’t know what they do. This all seems pretty dire, but my oncologist said that having this mutation means my therapy is more likely to work well. So a bit of a silver lining under a dark cloud.

 

This dark cloud has been quite overwhelming at times as nobody expects to get cancer, and my whole life is completely turned upside down. From a theological and philosophical perspective, the rubber has hit the road. I am thankful that I have a strong foundation and have answers to the difficult questions but I still don’t like it and it hurts a lot. I am just hoping and praying for a good outcome and that I may have many more years with my loved ones.

 

It is not only my life that has been turned upside down, this has had a massive impact on Christine and our children. It is devastating to think of your children losing their father, I know this all too well as I lost my dad when he was only 67. Even more devastating to think that Christine could be on her own in a few years. We have reached our golden years, you know, kids left home, cash in the bank etc, so we were really looking forward to running away together and doing things that we wanted to do rather than having everything dictated by our employment. I was calling this semi-retirement. Not that we wouldn’t work, but we would only do the work we wanted to do. This was the dream, but all shattered for now.

 

For myself, I feel I have done a lot and travelled etc. so there is not much more I need to achieve. However, I feel one of my main purposes in life is to be there for my children and grandchildren. That is what hurts me immensely, that I may not see the grandchildren grow to maturity. My boys and I have a few tech business activities on the go that I am heavily involved in and that I really want to see them make into a success. One of the most important things as a parent is to see your children succeed. They all have already done extremely well and I am very proud of them. Together as a family, we’re all hurting and sharing this burden together.

 

I was supposed to be travelling overseas again, catching up with old colleagues, instead I am pretty much in isolation and my academic research and teaching career has come to a sudden halt. I am currently still involved in organising and co-charing an international conference in Singapore due to be held in a few months, but now I can’t even go.

 

Thankfully, I have still been able to do some work for the organisations I am involved in, which is great as it is a good distraction to the reality of my situation. Many times I stop and suddenly remember: crap, I have cancer. Things got even tougher this last week as I developed a chest infection and had to go onto antibiotics. This is very frustrating for a person who hardly ever got sick in the past. I’ve had to get used to constant probing and blood tests, not great for someone who is afraid of needles! But today I am feeling a lot better and am ready for my next infusion on Wednesday. The little bit of pain I had started to feel before the treatment appears to be subsiding. My tiredness and nausea have reduced significantly, so these are all positive signs that things may be going in the right direction.

 

This leads me to my second CRC, which I have called Circumference Round Centre. In other words, how big is my pot. Over the last half a year or so I had actually been losing weight and was more tired than usual; Christine even commented about it several times, but I just put it down to burning the candle at both ends with all the things I was involved in. Even though my appetite has reduced, it appears I have again put on some weight, another good sign which my oncologist was pleased with. This is all due to the great care that Christine is putting into feeding me and making sure I eat healthy and to being home all the time and not far from a pantry full of goodies sent to me by kind and caring colleagues.

 

One of the very difficult things I had to do was to write many emails to my colleagues and friends scattered all around the world announcing my diagnosis. I have been overwhelmed with the expresses of concern and support from everyone and am thankful that others have stepped up to take over many of the things that I was doing.

 

I am very hopeful that this treatment will work and that I will be able to once again see you all face to face. Just like during lock down, one of the hardest things was the lack of face to face contact with people. I still am spending several hours a week on Zoom, but it’s not the same as sitting around a table and sharing a meal. Also, being quite a practical person, I miss the hands on in the lab. But after a few rounds of treatment, all going well I hope to be able to pop back to Wellington again to get back to the lab.

 

 

Thank you all for your love and support and the many encouraging messages that both Christine and I have received.

 

Love to you all,

Robin

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