Police Incident

Note to self: No matter how well I might feel I'm coping with my ever-changing life, there is always something darker lurking just below the surface. In addition to fear of where the next twist in my medical journey is going to take me, there is an unshakeable sense of impending doom. For example, I cannot get past the thought that this is likely my last Christmas. I need to find a safe outlet for all of that. In the meantime, recent brain-related issues have brought some of the frustration associated with those thoughts to the fore. In a roundabout way, I'm grateful in that the experience has oddly helped me cope somewhat better on an entirely new level. But not without some added emotional pain and frustration along the way.

My last post focused on how well I've recovered from my most recent surgery. A remarkable thing indeed, although I mis-wrote that I was eating lunch shortly after departing from the post-surgery recovery room. For the record, I wasn't even allowed water that first day - although I did opt for a couple of oral meds so my throat didn't completely dry up. Other than that, I had nothing more than a couple of sponge swabs to suck on. The first time I was allowed any amount of fluids let alone solids was the next day. That's when Ellen took the photo of me and my lunch tray.

I continued to improve until the afternoon of my second radiation treatment. That day I couldn't walk the four blocks from the Cancer Agency to Donna's place. I had to take a taxi. When I arrived at her condo, I went straight to bed and didn't wake up until it was time to go to the Agency for the next treatment the following morning. When I was at home for a break over the weekend, I was pretty much confined to bed.

Full-brain radiation results in an unbearable amount of swelling in the brain, far more than the surgery itself created. Migranes became a regular occurance as did nausea and subsequent vomiting. Head not at all happy. Nor was my sacrum largely due to the amount of time I had to sit on or get on and off a very hard x-ray table - halfway up or down was the worst as that's when the skin pulls tightest in that area of the body and the pelvic area bones take the most weight and strain. Walking wasn't particularly comfortable either. So it was decided that my sacrum should also receive a hit of radiation. That came on the final day of treatment, following the usual two-sided blast to the brain. I could actually feel the laser burning my skin and heating up the bone throughout the process, and the sacrum/pelvic area was even more tender when I wiggled my way off the x-ray table. Suddenly all radiation-related side effects were intensified. Dexamethasone dosage was doubled but I also needed hydromorphone (dilaudid) to help keep the pain under control. Not a happy time for brain, butt, tummy or any other part of my person.

As luck would have it, all this was taking place as the BC Cancer Foundation was ramping up its annual Christmas campaign. Everywhere I went in the Agency I was pursued by folks wanting me to buy raffle tickets or books or what have you. Lost count of the number of signs pleading for donations. More nausea set in as a result.

I used to be a regular donor to the BC Cancer Foundation and every/any other cancer-related charity. I also volunteered my time, much of it while undergoing initial chemo and radiation treatments. I thought I was doing a good thing, honouring family members and friends who had cancer. It was also a way of honouring my parents' philanthropy in that same direction - Dad started the volunteer driver program in South Surrey and was a regular driver himself. For several years he co-ordinated one of the largest door-to-door fundraising campaigns in that same area, and both he and Mom put in copious hours handling hundreds of blossoms on Daffadil Days. As I stated in an earlier post, in time I began to question the increasing corporatisation of all of these organizations' funding campaigns. And, yes, the Vim & Vigour thing continues to be a very big sore on my backside.

It has been some time since I made regular visits to the Vancouver agency campuses thanks to the ability to have many of my non-trial chemos administered through the hospital in Sechelt. Suddenly, for 10 straight days, everywhere I went I was subjected to V&V magazine as well as constant pleas for funds. In addition, the local media was finally telling the world what I already knew: that the BC Cancer Foundation does not give nearly the amount of money to research it says it does.

Understand, I think it is wonderful that the BCCF gives around 70% of what it raises to research. I would simply appreciate it if they were more honest about where the remaining money goes.

[[Don't believe me? Check out the Foundation's annual documents filed with the Canada Revenue Agency*. I was especially taken aback by the amount channeled into fundraising - akin to driving around asking for gas money so you can ask for gas money, no? Compensation lavished on senior personnel was another eye-opener. No thought that charity begins at home with these folks it seems. The cost of obtaining the rights for V&V (the lovely Amy at McMurray Publishing in Phoenix, AZ told me the BCCF bought the exclusive rights "for that jurisdiction" so at least no other local medical patients are subjected to the rag) is buried somewhere in the reported administraton fees. Yes, getting a mag this way is far less expensive than producing one from scratch, but that is yet another use of funds purportedly raised for research which are not going to their intended use. As for the recent coupling with Enbridge for one of the Foundation's major fundraisers, well that's a great way to have job security, no? But I digress.]]

From my experience, the BC Cancer Foundation is not at all interested in hearing from anyone who is not fully supportive of their tactics. I've filled out every survery, every comment card, sent emails, met with patient support reps at the Agency, and done pretty much everything else I can think of to get someone to understand that not all cancer patients like being pawns in the ongoing deception. No response. (If you are an articulate young person or a young mother with young children who says anything remotely positive about the Foundation or the research it purports to fund, you are whisked onto the lecture circuit so fast it will make your head spin. Personally I'm waiting for a wide-eyed pet to be the next Foundation spokesperson - nothing rakes in the dollars quite like kids and animals!) Sooooo when approached repeatedly for donations and having V&V thrown in my face for 10 straight days, I opted to try the only avenue I hadn't yet approached. Following my treatment, I walked to the nearest BC Cancer Foundation office to try to make my case in person.

As it happened, the closest office was on Heather Street, almost directly across from the BC Cancer Agency where I get my treatments. Nobody was in the front office area, so I had to call out before anyone came to see what I wanted. That's when I was informed that I was standing in the event planning office. That's all they did there, plan fund-raising events. And sell merchandise bearing the BC Cancer Foundation logo. Since nobody there would be able to address my concerns, the nice man who came to talk to me offered to get the business card of BCCF President and CEO, Douglas Nelson. The man asked me to wait until he got back and then left the building. For some reason I felt that would be a good time to tell the other staff members that they were making a living on the backs of the sick and dying, and that they should be ashamed of their role in the deceptive practices of their employer. That's when two attractive young women marched up and told me to leave. I refused on the grounds their superior had told me to wait. That's when one of them laughed - likely a nervous laugh, but a laugh just the same. Then she started rolling her eyes. That's when I dropped the first F-bomb as in "what the f*** is so funny?" or "what the f*** are you laughing at?". She responded by calling the police. The officer showed up at the same time as Mr. Nelson (and a bizarre woman who said nothing but was constantly shoving a box of tissues at me - how much does it cost the BCCF to have an offical Kleenex holder? FYI, the tissues are not standard hospital issue one-ply but triple-ply and the same colour as my paper panties. Wonder how many research dollars are diverted to fancy nose wipes.)

The officer left after less than a minute. He obviously concurred with my insistance that I wasn't bad but merely very angry and that his time and the city's resources would be better spent if he would pursue some nerdowell evildoer.

For his part, Mr. Nelson may have sat with me for a time, but he didn't hear a thing I said. Rather, he responded to each question, each comment with a well-rehearsed pat answer (in the media these are called talking points). Once again my concerns were totally blown off.

But there is a happy ending to all of this.

Not only were my family members and friends spared news footage of my possible arrest for disturbing the peace by demanding the BC Cancer Foundation be more truthful in its remarks about the amount of money which actually goes to cancer research (closer to $23million not the much touted $50+million the BCCF claims - see that T3010 for proof) but I discovered a way to bypass the BCCF altogether and, thereby, ensure my donations for research actually go to researchers. It is heartbreaking to know that most if not all cancer researchers are forced by the current system of fundraising to spend more time seeking funding than doing any form of research. How do I know? I have friends who just happen to be cancer researchers. They also tell me there is often not enough money for basic office and lab supplies let alone salaries for researchers. A very sad state of affairs.

I am hoping that, somehow, the BCCF learns to be more sensitive to the affect its various activities have on many of the people it claims to be helping. There has to be some forum for bad players like me who don't feel comfortable quietly accepting the current way of doing things. Nobody likes to be used or abused or disrespected. People who are ill far less so. I also have little doubt that the majority of donors - who are not counted among the healthy wealthy who insist on getting something in return for their dollars be it their name emblazed on a building or invitations to lavish gala events - like being deceived re where their donation actually goes. Given the BCCF's track record, I truly doubt ticking the "research" box on a form in any way ensures an attached donation is used solely for that purpose.

So here's the happy ending:
I've learned of a way to give to cancer research without having to go through the BC Cancer Foundation or any other agency. Yes, Virginia, it is possible to given a donation directly to a researcher or research team. I found my donation destination via a simple Google search. Log onto the BC Cancer Research Centre website (http://www.bccrc.ca/) and click on the Departments and Programs page, or do a search for a specific cancer or research field. If you contact the researcher/research team directly, they will tell you the best way to donate to them directly. Okay, so you might not get your name on a building, or even a tax receipt, but at least you'll know your donation is going where you intended it to go.

*  http://www.cra-arc.gc.ca/ebci/haip/srch/charity-eng.action?r=http%3A%2F%2Fwww.cra-arc.gc.ca%3A80%2Febci%2Fhaip%2Fsrch%2Fbasicsearchresult-eng.action%3Fk%3Dbc%2520cancer%2520foundation%2520%26s%3Dregistered%26%3DSearch%26p%3D1%26b%3Dtrue%26&bn=118818434RR0001   Click on the T3010 for details as submitted by the BCCF.