Thursday, April 05, 2012

it matters

Last Tuesday was treatment day. After a longer wait than usual (40 minutes -  I don't think I've ever waited that long in more than 6 years of treatment), my name was called and I was asked to go to Pod 3 (this sci-fi evoking nomenclature amuses me greatly, given that the world of cancer care is already pretty bizarre).

Despite my long wait, I noticed that Pods 1 and 2 were completely empty. Pod 3, however, was a different story. All 6 spots were occupied and there appeared to be only two nurses helping us all. 

Have you seen 50-50? I loved that film, and by and large, I found it to be a pretty accurate reflection of my own experience. One thing did raise an eyebrow though - the fact that they seated the patients in the treatment room so close together that their knees could touch. I understand that this likely fiction helped to advance the story but in real life I would never enjoy being so 'up close and personal' with my fellow patients.

For a while, things were almost that bad at the old cancer centre until the construction of the new building began. After that, the din was excruciating but it did block out my neighbours' reports to the nurses on the frequency of their bowel movements.

The move to the new cancer centre has been a huge improvement. I love the light and the air in the new building but most of all, I love the space. During my last couple of visits, though, it has felt like there is a little less space to go around. 

On Tuesday, I cringed as I heard the woman in the bed beside me being grilled about her emotional, physical and financial situation by a community care nurse. I tried to concentrate on my book while the woman across from me was informed that she would need a transfusion. I was very relieved when my own interactions with the nurse were over and I could plug in my ipod and let The Flying Bulger Klezmer Band drown out the voises around me.

I'm a fairly stoic cancer patient and it didn't really occur to me to complain. The nurses were lovely and patient as usual, and they were definitely doing their best to keep on top of everyone's needs. I didn't want to give them a hard time because I was annoyed and embarassed.

But it occurred to me later that these kinds of conditions are also unsafe and unhealthy. I, for one, am extremely reluctant to talk about the intimate changes to my body that are a side effect of treatment, so I can't ask how to mitigate them. My conditioned response in these circumstances is almost always to say "fine!" when asked how I'm doing. These days, that's pretty much the truth but that hasn't always be the case. There was a time, on a quiet treatment day about a year ago that I confided in a nurse that I'd been feeling low. She told me about the counsellors at the psycho-social oncology centre and asked permission to get someone to call me. A few sessions later, I was feeling much better.

I appreciate that I am getting cutting edge treatment and I know that's why I'm still alive. That's why I was initially reluctant to make a fuss about what seem to be little indignities.

But dignity matters. And how we feel as patients has a direct effect on our health. It's not petty or selfish to believe that there should be enough nurses working the floor so that patients don't have to be clustered together.

Maybe I should write someone a letter. Or maybe just a short note and a link to this blog post.


KOB said...

I think it does make a difference. I really notice this when I have to go Nuclean Medicine for scans. That dept is in the hospital basemenet. Most people in the waiting room are probably a little keyed up and jamming the patients in the waiting room cheek by jowl doesn't help. The "hot" room where you get the tracer injection is the back room of a filling station. ... you are right it does make a difference!

laurie said...

jam-packed, windowless waiting rooms are a real test for me - book, ear phones, deep breathing...

Lene said...

you should write a letter. Dignity matters. Privacy matters - hugely. There's supposed to be confidentiality in medical care. A lack of privacy violates that confidentiality. Aside from the principle of the thing, it can (as you mentioned) compromise how willing you are to share important symptoms.

laurie said...

i filled out the feedback form on the website and linked to this post. thanks for the encouragement.

Suzanne Klein said...

Laurie, I think the important thing is whether this is a recurring pattern (a decline in health service provision) or just one bad day (someone called in sick with little notice). If it's the former, we are really in trouble and need to fight back.


laurie said...

Suzanne, that's exactly right. And I am noticing that things are getting worse. There was a vast improvement with the move to the new cancer centre but lately I sense things slipping backwards. (and xo to you!)