Horizons Unlimited - The HUBB

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! :rain:

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