Tuesday, April 29, 2008

Advocacy

I'm trying to reclaim my bionic body. It's hard. And it's surprising and frustrating that there's not all that much support out there. It's been difficult trying to register for this post-op mastectomy physiotherapy group that this city claims to have at various health clinics. Yesterday, I went to one that not only claimed was held on the 4th Monday of every month, but also specifically listed "April 28th" as the date--to be told that I was completely wrong, and the woman who runs the group even called me this morning to apologize, but still made me feel like I was in the wrong. Then I tried to register for another group that's being held at another clinic next Wednesday morning, only to be shunted off to someone's voicemail--twice--with no return call confirming my registration.

I'm currently reading Living in the Postmastectomy Body, which has been helpful in learning some exercises to help me deal with the lymphedema. In the book, the author says that even though all the oncologists and surgeons always tell breast cancer surgery patients that they might experience lymphedema, that pretty much all breast cancer patients who've had any lymph nodes removed will experience this condition. This makes me feel that doctors should spend more time talking with their patients about this so that they can expect it and know beforehand what to do when it happens. It's really true that if one hasn't had this surgery, one really doesn't know what kind of discomfort and pain is on the way. It's almost as if medical professionals are there to just do their job--which is to treat the cancer--and then leave the patient to herself afterwards to deal with what might happen.

I also found some information for post-op exercises at the Patient Guide to Breast Care. So I was able to print these out and follow them. Two more resources that I found are Alicethenics, which is a very gentle exercise program (with very low production quality--but anyway, whatever), and Pilates Therapeutics Breast Cancer Survivor's Guide to Physical Restoration, which I haven't received yet but ordered yesterday. I'm excited to get this DVD because my focus now is to just get movement back. I list these resources because there might be some of you out there who are in search of this information, which I know now from experience is so hard to come by.

I also had my first acupuncture appointment today since surgery. It made me feel relaxed, and I even fell asleep for a moment, only to wake myself up with some weird gurgling I was making. I'm sure the other two women in the room who were receiving acupuncture were amused.

One last thing--I was at a friend's son's birthday party the other day, and she works at the cancer agency. One of her co-workers was telling me that she received a call from some man in Abbottsford who was expressing anger that the cancer agency's literature is available in Punjabi and Chinese (in fact, Dude was instrumental in having the literature available in these languages when he volunteered with the cancer agency 20 years ago!)--basically, this man in Abbottsford was saying that it should only be available in English, and that if you have cancer and don't know English, then you should learn it! What kind of racist, small-minded people are out there? And I was telling her that in fact, I think more should be done to help cancer patients who aren't fluent in English because in my experience in going for chemo, I've seen more people struggling with their treatments because they weren't able to communicate their reactions to the nurses. The cancer agency needs more people who speak different languages to be able to help anyone who needs help, period.

So I guess what I'm saying is that even in a place like Vancouver where we have top-notch facilitates for cancer patients, there's room for improvement--which is also saying that overall, more needs to be look at in terms of a patient-centered model for treatment, rather than just merely attacking the illness. Because even in the best-case scenario where the cancer is defeated, there's still a human being left to pick up the pieces.

1 comment:

Becca said...

a woman I work with had specialized massage to help with her lymphodema after her mastectomy and chemo...you should look into that. she said it helped a lot