On Monday night I "attended" a Tweet chat on Twitter called #bcsm (Breast Cancer Social Media). Basically, it's an hour long event on Twitter every Monday night at 9pm EST, and is attended by anyone who's interested in talking about breast cancer. If you missed it or would like to know more, here's a round-up and transcript of last Monday's chat by @jodyms who co-hosts and blogs at Women With Cancer. You can join the chat just by adding #bcsm to your tweets,
One of the really great things about this forum, is that it's also attended by health care professionals, and is a fabulous opportunity for patients, like me, to connect with these folks in a forum that doesn't involve an invoice or a fight with the health insurance company. It's really interesting to get a perspective from the "other side of the desk" so to speak and to also share mine.
After the chat, I read the transcript and was struck by a comment from one of the doctors in attendance.
More and more oncologist see Stage IV as a chronic disease that one can live a really long time with -- QUALITY TIME #bcsmLet me just preface by saying that I completely understand that the comment came from a place of kindness and compassion, perhaps to try and ease the fears of those in attendance who are living with Stage IV disease.
But on the other hand the comment did cause my blood pressure to spike somewhat.
Is this really the belief of most oncologists? Because if it is then then I'm putting my hand up to say that there may be a DEEP chasm from what oncologists believe to what metastatic cancer patients are really thinking.
Firstly, I don't see metastatic breast cancer as a "chronic disease". I believe that to refer to it in this manner does a huge disservice to the work of the metastatic breast cancer advocates. The "chronic disease" argument invalidates our concerns about current treatments and our very real fears of dying of breast cancer, and completely hides the fact that metastatic breast cancer patients still do not have a game changing drug designed to specifically prevent initial and new metastatic tumors. And the same could be said for many other Stage IV cancers actually.
What we do have is a long list of incrementally and temporarily successful drugs designed to shrink tumors, none of which provide a cure, and none of which are known to actually prevent new metastases. The drugs buy us time, more for some patients, less for others, and there is no way to know which one's will actually work, for whom, and for how long. So we just keep working down the list of drugs until we perchance get the miracle of N.E.D. (No Evidence of Disease), or as is more likely, we exhaust our options and then say enough is enough and end our lives apparently and invariably with "grace and dignity". Is this really what "chronic disease" looks like?
In the metastatic breast cancer setting, how is a "really long time"defined and what does "quality time" really mean? I suspect that if a patient were asked, their definitions and understanding of these terms might be wildly different to that of their medical team and indeed that of family and friends.
"A really long time" in the world of chemotherapy drug development is termed "overall survival" and is generally measured in months, not years. To the statistician, a metastatic breast cancer diagnosis might mean average survival of about three years. To the actual patient, we say "screw statistics" and hang on for dear life to the belief that we're going to be the ones who beat the odds. And some of us do, but there's also many that don't. For me, the question of what a "really long time" looks like is something I prefer not to dwell on. Hopefully it means years, maybe even a decade or two or three, but no one really knows. I just hope that it is a "really long time".
And "quality time"? Quality time to me means
- not having to go to chemotherapy every week
- not having to obsess over my bowel movements
- not having to wrangle with Nurse Ratched or Nurse Useless
- not having to deal with mystery secondary illnesses that of course could not possibly be related to cancer treatment
- not having to worry about cascade side effects of drugs taken to combat chemotherapy side effects and cancer symptoms
- not having to waste time dealing with health insurance and billing issues
- having a left arm that actually works and doesn't cause me pain 24/7
- having hair to brush and style
- not having to be ruled by an alarm clock and pills that must be taken on time
- not having my life put on hold every three months whilst we wait for scan results
- being able to sit in the sun without having to worry about chemo-induced sunburn
- being able to go on vacation without having to think about proximity to hospitals et al
- not having to ask family members to help me with household chores and grocery shopping
- not having to worry at forty years old, about the same issues that concern senior citizens
- having the energy to stay up past 10pm
- not having to worry full stop
Now there may be many of you who disagree with my reaction to this particular comment. And that's fine. I welcome the discussion. We can all learn from each other. So let's keep talking about this. Let's add our voice and be heard in forums like #bcsm. Hope to "see" you there for the next chat.
Every voice matters.
Now back to summer hiatus and some QUALITY time !