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  #1  
Old 1 Jun 2012
Susan Johnson's Avatar
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Grant's health

Those of you who don't subscribe to the newsletter may not be aware of Grant's medical issues, so here it is, from Susan's perspective!

Grant was diagnosed with aggressive prostate cancer just before Christmas, after a sharp rise in PSA level and other indicators prompted a biopsy and other tests. Thus began several months of further testing, differing diagnoses and treatment recommendations, depending on which medical specialist we consulted with. Surgeons recommend surgery (cut it out!), radiologists recommend radiation (burn it out!), and chemical oncologists recommend chemotherapy (poison it!).

Actually, because of the stage that Grant's cancer is at, the specialists all recommended 2 out of 3 - surgery and radiation OR radiation and hormones OR chemo and surgery! Look at where the prostate is located. It is in a very sensitive area, and all these treatments come with significant risks to QOL (Quality of Life) :-(

So, after a lot of anxious research and consultations, we were able to get him into a clinical trial in Vancouver. He was randomized into the group that gets 4 months of chemotherapy and hormone therapy followed by a prostatectomy. His surgery will be done by the best surgeon in Vancouver, one of the best in North America, so we're very encouraged, as the skill of the surgeon is key to reducing the risks to QOL...

He started the chemo in late March. Fatigue is the most significant side effect. He's on a 3-week cycle, and for 2 of every 3 weeks he has to stay away from other people because he's very susceptible to infection, and he's only able to work a few hours a day. Then the week before his next cycle he's got more energy and can work a normal day (that's a 7-8 hour day, not his usual 10-12 hours). He's had other side effects, including loss of beard and most of his hair, but he's tolerating them okay, and his PSA has dropped every cycle, so the poison is working! After a short time to recover from the chemo, he's scheduled for surgery at the end of August (the week after the Canwest meeting!), and we're hoping he'll be recovered enough to travel to California in October.

We have three reasons for sharing all this with you. First off, Grant won't have his last chemo treatment until early July, so that has completely messed up our travel plans! We won't be getting to any UK or European meetings this year. We're very thankful we have wonderful local organizers - Jens (Germany), Liam, Jochen and Drew (Ireland), Sam and Iain (Ripley), Dimitris (Greece), and Shane (Australia), plus lots of volunteers - so we know the meetings will be great. We'll try to do a Skype call just to say hi (though Grant hasn't been seen without a beard since he was old enough to grow one, so it may be audio only ;-)

The second reason is to encourage all you guys who are 40+ to get your PSA tested annually and keep an eye on the trajectory. A rising PSA level is an early warning that your prostate is unhappy about something, possibly prostatitis or a benign growth but possibly cancer. Most men will get prostate cancer eventually, but not all men with prostate cancer will need treatment immediately. It's usually a slow growing cancer and 'active surveillance' may be an option. Having a simple PSA blood test gives you advance warning, and knowledge is power. By the time your physician can feel the tumor it will be much further advanced and the treatment options will be much less pleasant!

Finally, you are our extended family, all over the world, and we thought it important that you should know why we've been so quiet lately.

The cancer has not been all bad news, we've found it has brought us closer together and made us more appreciative of life's joys. But for the next few months at least, we're not doing as much work as usual (caregiving takes a lot of time too). For those who didn't know, HU is not a big multinational with heaps of staff - there's just Grant and I, with very occasional part-time help on the newsletter and spreadsheets, and our local meeting organizers and volunteers. So we do what we can, and we're no longer beating ourselves up about what we don't get done. Oh, yes, in our spare time we moved house again in January, and maybe you noticed the website looks a bit different ;-)

Since we're homebound for awhile, our focus for the next few months will be on the website, which still needs work on the Search function, enabling the new community features, blogging functionality and the shipping database. We will also be applying the new style to the existing blogs, meetings pages and the newsletter, but that's not as easy as you'd think! So still lots to do, and we still need volunteers to give us feedback, and later to help with testing. We need several teams for all this, we're not expecting anyone to be involved with all of it. If you have some spare time over the next few months and want to help, please get in touch!

Cheers,
Susan
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  #2  
Old 1 Jun 2012
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I can't volunteer to help out with anything, since mostly I just get in the way and make whatever comes my way more complicated and irrational, but I'm wishing the absolute best for you both: health, pleasure, and steadily accumulating wisdom!

Mark
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  #3  
Old 1 Jun 2012
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Susan

I saw this in the newsletter - please send my best to Grant, I am sure he will be okay - looks like you guys have a good plan
thanks for sharing this with us.
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Old 1 Jun 2012
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Wow, that some (bad) news.

Grant and Susan: the very best from me and I hope to see you, both, in good health next year.

Pieter
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  #5  
Old 1 Jun 2012
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Thanks for the information. Get well soon Grant. Kisses and hugs to both!
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  #6  
Old 1 Jun 2012
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Best of luck, and thanks for your massive contributions thus far!
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  #7  
Old 1 Jun 2012
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Sorry to hear this, Get Well Soon Grant!

Thinking of you both,

Ian (of "The Two Ian's"!)
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Old 1 Jun 2012
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wish you fast recovery and all the best...many more positive energy winds from Turkey to you also...There are some more developments expected to be done to the Bikers'World which can be realised by the way you leaded and we feel all these are in your ideas and targets...We need your ideas,plannings,organisations not only for bikers world but also for a more friendly and peaceful world....─░stanbul Bikers Club...
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  #9  
Old 1 Jun 2012
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Man, that sucks. Get well soon, Grant! Good thing you're not in the US. That'd cost you a couple hundred thousand dollars.

-Dave
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  #10  
Old 1 Jun 2012
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3 score and 10

Susan and Grant,
Many thanks for sharing this information with us!
Such times are never easy, but committing to writing can be very therapeutic.

Out of these problems do come new ways of viewing the world and continuing to make our own personal way in the world.

Very best wishes for the medical treatment during the duration - from on crocked rider to another!!
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  #11  
Old 1 Jun 2012
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Sorry to hear of this. Best wishes to Grant for a successful recovery, and our thoughts are with both of you.

David & Sarah Shield.
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  #12  
Old 1 Jun 2012
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Get well soon Grant!
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  #13  
Old 1 Jun 2012
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Hello Suzan and Grant,

I am very sorry to hear this but I am happy that you got a good medical team taking care of Grant. Best wishes to Grant for a full recovery.
Also best wishes for Susan, because for you it is a difficult time too.
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Old 1 Jun 2012
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Wishing you all the best for a speedy recovery.
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Old 1 Jun 2012
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Our best wishes go to Grant. Good luck with your treatment and get well soon!
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