Moving for Melanoma 2021

 

Dear friends,

 

https://youtu.be/QZ67t8vDOHA

A year ago I asked for support in raising funds so that Ocumel Canada can support Canadian patients. Thank you to the many people, all over the world, for your generosity and kindness. I couldn't believe it!

We have had a wonderful and productive year, thanks to the incredible support you gave. We now have a detailed report on the issues that face ocular melanoma patients across the country.

 

https://saveyourskin.ca/wp-content/uploads/SYSF-Ocular-Melanoma-Survey-Report.pdf

 

The biggest difficulty they face, if they live far from the four treatment centres, is travel costs which are often not covered my medical or private health plans. On Wednesday we were asked if we would cover the hospital costs for three out of province patients who need to start a new treatment in Toronto which has just become available, the first of its kind and the first good news we have ever had for patients with metastasis. We immediately said yes and will now try to change the system so patients are not discouraged from seeking treatment. We help the patient first and then advocate for change.

We now have a private Facebook group with over 100 Canadian patients in it so we can hear their concerns and share information. This builds community where previously there was none. We are learning to support each other.

And so, I am asking again if you are able and willing to help fund our activities as we continue our work. Every dollar we raise goes to cover patient costs. None of it goes to admin or other expenses.

Have a look at my fundraising page this year and please consider helping out.

 

https://saveyourskin.akaraisin.com/ui/moveformelanoma2021/p/66ce5f2cba6b4f2a97e485637e0c7e56

 

 And here is another story of a young man in North Vancouver whom we have helped.

 

https://saveyourskin.ca/laurence-story/?fbclid=IwAR0XuCRdAf79ff8CTBphigDjtZmge2zcTHBxtKMvP4ymnRPAxk7a38hTsMM

 


With gratitude,   Nigel

                                     Christmas 2020  The strangest Christmas of all

 

Dear friends and family, 

 

This has been a year like no other, unless you survived 1918 and have lived to 102! If you are reading this, like me, you have almost made it  through a global pandemic. Hang in there! Two million have not made it through and those are only the ones who got counted. So, I am even more glad than ever before to be alive and to watch the first vaccines arrive at our airports just in time for Christmas.

 

Merry Christmas especially to all of the scientists who have scrambled to do 10 years’ work in 10 months. I hope they can all have a beautiful and celebratory Christmas with close family.

 

And families will spend a lot of time together this Christmas!  Where I live, we can only be with immediate family, so I will be on my own, a first. It will be perfect. More gregarious Christmases will return and be cause for great joy.

 

In many ways, it has been a year that has been a long time coming. We have been taking good luck for granted.  Peace and prosperity are not a given. We have to work hard for both. Widespread world peace for 75 years has been an extraordinary interlude. Imagine enjoying all of it! How lucky can one get!

 

And this is really what is uppermost in my mind. We are a fairly simple species. Together we have imagined an amazing world and then created it all around us. But the greatest work of all, nature itself, has been abuilding for a lot longer than homo sapiens. It will remain after us even though we seem hellbent on destroying the exquisite balance that has allowed so many organisms to coexist. 

 

Below, you will see what brings me the greatest joy this Christmas - a new life, hope for the future, just like Christmas 2000 years ago.  Welcome Rory Rhys Laurel Deacon!

 

Here’s wishing everyone I know, and those I don’t, a peaceful Christmastide and a promise of good health and happiness in the New Year.  With love, Nigel

 

 

Summer 2020

 It is a long time since I put pen to paper. I was having the time of my life and a global pandemic swept in!  Although I have been alive for a long time, I have not seen a global pandemic before. How extraordinary that a tiny virus can sweep all around the world like lightning, penetrate the remotest of places  and bring everyday life to a halt. As we watch it play out, we can see the shift as the virus, which emerged in prosperous societies, moves into disadvantaged groups who do not have the protection of sophisticated medical systems and adequate social protection. A virus has no consciousness and cannot be kind, but we can. I spend most of my time now figuring out what it means to be kind in this new world. It is not so easy. 

 

One way that I have been able to continue to be kind is to keep working at building support for people who, out of the blue, get diagnosed with ocular melanoma. I continue to be extraordinarily well and strong, but that is not the normal journey.  Ocumel Canada, from modest beginnings in January 2019, has gone from strength to strength. We now have a private Facebook group of more than 70  Canadian patients. My original dream was that I could find maybe 10 people! Every week we attract new members, mostly through word of mouth. We are about to publish the first report ever on ocular melanoma services across Canada. We are just starting to organize a global symposium on ocular melanoma that will bring experts and patients from all corners of the  world together. For me, that is what kindness looks like at the moment.

If you would like to lend a hand, I am starting an annual fundraising campaign so that we can continue and expand our advocacy. All contributions go the helping patients. There are no overheads. My time and creativity are free!

Sending peace and love to all,  Nigel

https://saveyourskin.akaraisin.com/ui/moveformelanoma2020/participant/5218425?Lang=en-CA

Merry Christmas and Happy New Year!

The Year That Was

Christmas is nigh and a new year will follow quickly on its heels. Time flies, ever faster. Goodness, I almost feel dizzy! At times, I feel I am the luckiest person on earth. Next year I will mark the tenth anniversary of a dire cancer diagnosis. How could I possibly be still here?

2019 has been a splendid year in my life. Almost everything seems to have gone right. I spent the early part of the year giving my NZ sister a hand as she got a new hip. She is now flying on all cylinders again!

Ocumel Canada launched in January. The idea had been hatching for some time. I have met some extraordinary people on my cancer journey. While cancer may have hurt them or their loved ones, they have found ways to change the conversation, advocate for change and build hope. I continue to come across Canadians who get an ocular melanoma diagnosis and need support and encouragement as they try to figure out the best way forward. The more we work together, the faster the storyline will take on a positive tone. This horrible disease will yield to science and hope. I feel the change happening.

In the Fall my son got married in Sorrento, on the Amalfi Coast, a dream wedding in a dream location. I also took the opportunity  to check in with all of my far flung siblings and some very good friends. I even got to spend time in Ethiopia with a new member of my family! We explored the Roof of Africa, a spectacular and extraordinary place, full of rain and cloud and exotic flora and fauna. Ethiopia is on the threshold of an extraordinary renaissance, constrained only by the old enemies, ignorance, poverty and ethnic nationalism. Will the dream come true? Will a new, prosperous democracy emerge on the last continent to prosper? I will hope for that.

And so, 2020 will soon be here. May you and your loved ones be happy to greet it and may you enjoy family and friends over the coming days. Life really is what we make it! 

Love and peace always,  Nigel

Relaunch!

My favourite photo of 2019

Father's Day on  Mystic Beach







Dear friends, I have been quiet for a long time and that is not at all like me! It is time to reach out and catch up.

Ocumel Canada, a dream for some time but now a reality, is up and running. Have a look at our website if you have time. The day to day work of advocacy for and support of Canadian ocular melanoma patients is now part of my day to day life. It is immensely rewarding. Although the cancer is very rare, I have made contact with many Canadians living with it. And sadly, some have left us during this year too. I  become more and more aware of our need for organization, advocacy and activism. Outcomes could be better. It is a group that would be very easy to ignore. We can do a lot more than we are doing.

With that in mind, I need to rustle up some money in order to build our advocacy efforts. On Saturday, September 14, 2019 a small team of brave people will walk along the Victoria Harbour with me in Victoria as part of Move for Melanoma, a cross Canada venture. If you would like to support us, please visit https://saveyourskin.akaraisin.com/ui/moveformelanoma2019/participant/5218425
Moral support is as important as financial support to me!

On September 20, I leave for a visit to all of my far flung siblings and to attend my son's wedding on the Amalfi Coast in Italy on October 16. Another highlight of the trip will be a visit to Ethiopia to hike the Roof of Africa, another long time  dream. I will of course blog as I go along! What joy and excitement lie ahead!

With love,  Nigel

https://youtu.be/j33EHBt_iGk

Christmas 2018

Dear friends and family, Christmas is here!

Santa Claus' arrival is imminent and the excitement is palpable and growing! Memories of happy childhood Christmases flood back. Presents, good food, family, spiritual observations ( probably in that order!)  - the essential ingredients. Peace and love, hopefully even forgiveness, permeate the atmosphere. 

This has been a wonderful year. I found myself in Canada in January, not my favourite month to be home. In February I had two romantic weeks in Puerto Vallarta with my friend. The weather was glorious and there is lots to see and do there. I had one nice trip out of town, with relatives of my friend,  to a beautiful beach north of Puerto Vallarta and I did think how nice it might be to have a holiday there as Puerto Vallarta has become very urban and busy.  

In April I attended an ocular melanoma conference in Denver, Colorado to reconnect with my many new friends and keep up with the science of, and research into, the disease. I spent a few days afterwards with very special friends who live just north of Denver. 

We had a perfect summer in Victoria, starting in April. The weather was so dry that we had very serious problems with forest fires throughout the province. Climate change is trying so hard to get our attention. Will we listen? Do people care?

I spent lots of time on the mainland as my friend lives over there and this gave me many opportunities to spend time with Geoff and his partner Aileen. They are just home from a very exciting trip to Nepal and Bhutan where they did some serious trekking in the Himalayas. 

In August I returned to Africa, always a very meaningful event for me. I travelled through many countries, several of which I had never visited before. Highlights were a visit with some of our closest relatives, the mountain gorillas, a visit deep into the Okavango Delta, climbing up the sand dunes on the Namibian coast, seeing the remains of our illustrious earliest forbears in both South Africa and Ethiopia, and spending lots of time with the animals and birds that make Africa by far the most beautiful continent. 

I have close family in South Africa and it is always a special pleasure to spend time with them. I also rediscovered a first cousin in Uganda whom I had not seen for perhaps thirty years. 

The most exciting project of the year though for me has been the formation of a national advocacy body for ocular melanoma, to support patients and caregivers and encourage progress in the care of those who find themselves living with this rare and dangerous disease. I was diagnosed with it in 2010 and developed metastasis in 2012 so I consider myself very lucky indeed to be alive. The official launch of Ocumel Canada will take place at the beginning of January. Now the hard work begins in earnest.

And so I find myself yet again eager to embrace the mystery and excitement of another year of living with passion. What a privilege to be alive and well!   Best wishes for a happy festive season.  Peace and love, Nigel

Ethiopia

Ethiopia has a very distinct history within Africa. It has never been colonized. The Italian fascists occupied the country for five years during WW2 but left quickly and the emperor of the time, Haile Selassie, resumed his reign. Ethiopia also has a long history of repelling invaders. 

Ethiopians are not one distinct ethnic group. Over 80 languages are spoken and there is enormous geographic and cultural diversity. Christianity came early to Ethiopia,  in the 4th century CE, and two thirds of the population belong to the Ethiopian Orthodox Church. The church has a powerful influence and still gives the country very conservative mores. It is surprising to see the devotion of even its young people, praying fervently in and around the churches, kissing gates and windows, bowing before icons and asking passing priests for a blessing. The priest offers the cross and the penitent kisses it and is touched by it. 

The population is high, over 100 000 000, and Addis Ababa is a sprawling, mostly uninteresting megalopolis. Land cannot be privately owned but is leased. The highlands are intensely cultivated, almost everywhere the eye can see and 70% of the population still lives in rural areas. 

The emperor was overthrown in 1974 and replaced by a communist regime, now mostly known for a campaign of terror and mass murder. It was replaced by a democratic government but one party has dominated until today. It is extraordinary that slaves, which numbered in the millions, were not freed until 1942. With such a different social history, a visit is well worthwhile. 

There is an evident gentleness about the people, and manners are very important. Greetings are elaborate with much shoulder touching while handshaking! The man hug must have come from here! Women seem to be surprisingly equal for Africa and are everywhere involved in commerce and industry. The young seem to have little to do in the towns and cities though and given how numerous they are, this must create a lot of social stress.

It is very challenging to be an independent tourist here as information does not abound and most people just hire someone to take them around everywhere. Everyone seems to be a 'guide'! When I have chatted with potential guides I have quickly concluded they have neither the linguistic skills nor the background knowledge to be helpful and would better be described as drivers. I have chosen to proceed on my own and have had a wonderful time. Those offering help have not been a persistent nuisance. I feel no danger, day or night.

The weather is lovely in October as the rainy season is now over, it is green everywhere and temperatures are moderate on the high plateau. There is much history to be explored, starting with the Kingdom of Axum near the northern border with Eritrea.