Hey gang, nice to be back in your inbox again. We’ve had a busy couple of weeks at RealTime Cancer, thanks to the extensive coverage on the study of cancer in young adults released last Tuesday.

As the study proclaims it is the most comprehensive study ever done in Canada involving young adults and cancer. This is a huge step for all young adults dealing with the unique issues that come along with a cancer diagnosis; people are paying attention. And as you may have guessed, I have some definite opinions about the study and the messages that have been put out in the media.

So I thought I’d share them with you.

On our web site and in this message you’ll find a collection of links to information about the report and the media coverage that has resulted from its release. But in this message, I want to hit on a few of the key points that jumped out at me.

First, the fact that a significant percentage of the country is talking about young adults dealing with cancer is huge; a massive push in awareness both towards improving things for young adults and for RealTime Cancer’s programs. Here’s a big thumbs up to those who committed the resources and did the research.

Secondly, although this is a huge step, I was troubled and even a little frustrated to see that the first message and headline in the study was a positive statement about incidence rates, when the fact is that young adults have to deal with significant and unique challenges when diagnosed with cancer. I’ll qualify this by stating the obvious; I’m not a scientific researcher and approach this topic from a survivor’s perspective. Suffice it to say that I would have chosen another message; maybe something along the lines of “Cancer is different for young adults, different approach required”.

Thirdly, the study looks at young adults aged 20-44 years. This isn’t something I’ll delve into much but in my opinion, this is a stretch. In addition, another charity released a position connected to this report highlighting its definition of young adults as being 20-49 years of age; another significant stretch, in my opinion.

My purpose for raising this issue is not to instigate the dialogue on the definition of young adult for the purposes of cancer programs, though it is one we constantly discuss at RealTime Cancer. My purpose is to point out that some of the major messages pulled from this report can be disputed if you adjust the definition of “young adult”.

For example, a message that I pulled directly from a study done by Dr. Archie Bleyer, a member of RTC’s health advisory board, states that incidence rates in young adults aged 15-29 years has been increasing faster while mortality rates have been increasing slower in the past 25-30 years than those in younger and older age groups.

Not to get too distracted by that point but it is one I felt I should make here. I chose not to have this discussion with the media in the past few days as it would surely have clouded the issue. Hopefully it hasn’t for you.

My fourth and final point is that another very positive thing this report has done is to allow RealTime Cancer and young adult survivors to voice their opinions about why cancer is different for young adults. These issues are the same as the things you’ll read on our web site and that I write

about: fertility, finances, dating/relationships, education and career have all come up in the past week.

As for next steps, it is my understanding that Cancer Care Ontario, the driving force behind this study, is planning another extensive look into what adjustments are required to better service young adults. This would be another HUGE step towards the actual implementation of programs focused on the needs of young adults within the Canadian healthcare system.

Outside the system in the community, where RealTime Cancer operates, I know very clearly many of the things that need to happen.

We have been saying for a long time that there is a “gap” in the cancer community and young adults are the ones caught in it. It is the sole reason RealTime Cancer exists.

And this gap is most evident when looking at community support programs. For example, in 2005, RealTime Cancer raised $75 per new young adult cancer diagnosis (roughly 2000 a year between 15-30 years). However, if you were to look at the annual revenues of most major national cancer charities and then look at their target audience (i.e. the number of new cancer patients in their target audience diagnosed each year), you’ll discover they raise at least $1,000 per cancer diagnosis each year; some raise more than $1,500 per patient.

We know that we have a long way to go to level the playing field, so to speak, and provide young adults with similar community support programs as are available for younger and older patients. But RTC’s mission is crystal clear: create more awareness of the issues and of our programs and raise more money to allow for the growth of our programs and to help more young adults deal. The details of how that will flow occupy more of my time these days than ever.

I can’t help but continue to feel that the best is yet to come and, as long as you’re interested, you can count on me sharing those details with you.

If you’re interested to see more of the coverage from the past few days, the following links maybe of interest.

CTV story - http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20060912/cancer_study_060912/20060912?hub=CanadaAM “>http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20060912/cancer_study_060912/20060912?hub=CanadaAM

CBC story - http://www.cbc.ca/cp/health/060912/x091204.html

Global story (from the week of the retreat, two weeks ago, second line, third item in) - http://video.canada.com/?&cat=Global Quebec

Always…

Live life. Love life.

Geoff

Hey gang, hope this finds you all very well and that you haven’t forgotten me altogether! I’m back after an unexpected absence resulting from the significant adjustments we’ve made to the RealTime Cancer web site. In that process we got a new mail server, that was not functioning until this week. So here I am.

If you haven’t checked out the new site, please do, we’d love to know what you think. It’s a work in progress but thanks to the great people at Triware Solutions we’re making solid progress.

What’s new? I’ll answer that quickly.

You’ll see by my subject “odds” that I going to talk about odds. For some time I’ve always enjoyed being the underdog, before cancer, and still now love the underdog. Last week I was thinking about my odds, of doing any number of things. When it hit me that since my diagnosis there are a number of examples when the odds were stacked against me and I pulled through, and also when they were in my favour and I didn’t.

First big example, my first transplant, the one I debated having for a month, ultimately decided to have as I was told my chances of a cure (staying in remission for 5 more years) were 70%, while just 20% without. What happened… I relapsed just over 2 years later.

After my first transplant I ended up in ICU on life-support, given less than a 2% chance of coming out… I came out. (7 years ago last week)

Second transplant in 2001, I was told that likely my first remission will be my longest, which was just over 2 years. I’m now a month and half away from celebrating my 5th transplant anniversary on October 10th.

* Editors note: the doc that actually did my second transplant was not the one who told me the above info, but instead he actually gave me a recent study, at the time, which highlighted that roughly 50% of patients having a second transplant were cured. (i.e. lived 5 years post-

transplant)

My final example of beating the odds is truly another miracle that is my life… the reason I debated having that first transplant is because I was unable to bank sperm prior to it, thus eliminating any real possibility of having my own kids. Transplant patients are 99% sterile after the procedure. And now I’ve had two transplants!

My fertility nurse told me she’s never heard of anyone’s sperm coming back after two transplants. However, throughout the past 8 years I’ve done regular tests to see if I have any sperm. Always nothing.

Then in April 2005 I was tested and had 0.2 million sperm with very low motility!! A super low count and not very active, but I had some!! A long story short… Karen, my wife, and I went to see a fertility doc last Fall to begin discussing our options for starting a family at which time we were reassured that with counts like mine we were effectively using birth control and we would not get pregnant naturally.

So what happens less than two months later… we get pregnant naturally!!

The news came with shock and excitement, and while the shock has faded, only slightly, the excitement grows daily. Karen is due on October 12th, and I’m pulling for a delivery two days early, which would be a very cool coincidence (if I believed in coincidences).

I do want to apologize for not getting this news out earlier, by the time my old email group was down we were just getting ready to tell those outside our close circle, so I figured my first email to you in months had to cover this.

We’re jacked, I’m jacked, everyone’s jacked!! There’s still in some shock going around but as Karen’s belly grows that wears off, slowly.

I guess in hindsight I should have known that I’d be able to beat the odds again, but I honestly was not allowing myself to think about it.

Perhaps because it was too painful, frustrating, infuriating, I don’t know.

The due date is drawing near and I’m doing my best impersonation of a handyman and trying to finish the basement. Why finish the basement says you? Cause the soon to be nursery is full of stuff that is going in the basement! It will get done, and it will all work out, I know that, but just in case I’ve been making a deal with the baby… it doesn’t arrive until at least 4:00 pm on September 26th, after which all my major commitments are done and when it is four I’ll give it lots of money for candy. If the baby is anything like its mother I’m safe, but only time will tell and I know it will arrive when it’s ready.

I promise more updates on this in the coming months, and on all other significant things in the life of me and RealTime Cancer.

Always…

Live life. Love life.

Geoff