Move For Melanoma
Dear friends,
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.
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
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
