Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
Wednesday, May 20, 2009
5 am Wake-up Call
It’s 6 am. I’ve now been dragged, unhappily, back into hospital time.
I was woken up at 5 am for lab draws. I was woken up at 5 am to be stuck with a needle and then I tried to go back to bed.
At least I slept nicely. The ativan and ambien I requested to assist in this must have helped.
Then, after I’d gone back into my slumber, who knows how much time had gone by, but it couldn’t have been very much, the poker was back, for more blood, waking me up when I should be resting.
I’m guessing this second stabbing occurred about 5:30 am since it is 6 am on the dot now, and quite a bit has taken place since my initial waking.
The second stabbing I tried to sleep through, literally. I stuck out my arm from under the sheets and didn’t open my eyes, hoping, that after attempt #2 I could really go back to sleep.
No such luck.
I think I must now be labeled “awake” to the nurses, since mine decided to trek right in with questions about pain.
I’m barely able to talk. I’m barely able to open my eyes. I certainly have not had my coffee, and I won’t be having any of that, because I am NPO (no food allowed).
She immediately starts asking questions about my pain.
I don’t know. I just woke up. I haven’t moved at all. There is no way of know exactly how much pain I am in from my bed without testing the limits a little.
“Oh, so you’re not in pain.” She says.
No, certainly not what I said at all.
“Can I have my oxycontin?”
“I’ll go check.”
My oxycontin is my baseline narcotic painkiller. I take this twice a day to maintain a tolerable pain level. Thanks to the advent of these medications, I am able to live a relatively productive life. Without them, I’d probably be curled in a ball crying somewhere and completely unable to move.
I take narcotics so I can have a semblance of the quality of life I once enjoyed.
However, I watch them carefully.
“We can’t give you the Oxycontin now, you receive your oxycontin at 8am and 8pm. We can give you some morphine for your pain.” The nurse comes in and explains.
At least she’s getting me something, but me, with my crazy, meticulous, anal schedule of narcotic taking, I do not like having to be under the thumbs of rules and guidelines by hospitals, even though I know exactly what they’re for.
I take my oxycontin first, upon getting out of bed, with the hopes that the baseline long lasting release will prevent me from needing to take the morphine.
This is not a thought process the hospital’s share. I understand.
Hospitals need to undergo a huge cultural change along with health care reform.
I see the cultural change happening in individuals everywhere, and hopefully, this will turn into a movement of patient centered care.
As most of us have seen all over the news healthcare is big business. It is big industry. Until now the health care stakeholders were running under the assumption that the consumers, the sick, had to buy into their plan and whatever their plan allowed, at their costs.
Those times are changing and hopefully bringing along this idea of patient centered care whereby tests, medications, surgeries, etc. are done for no other reason than they are in the best interest of the patient.
Five am blood draws on cancer patients with unknown, excruciating abdominal problems would be the first to go in my book.
Blood is drawn at 5am on patients so it will be available when the doctors round at 8 or nine am.
The blood draws are catered to the needs of healthy professionals who want to look at the results when it is most convenient for them.
The timing does not take into consideration that sleep is sometimes the only true pain relief a patient gets (It has been for me) and awakening them thwarts whatever healing process was taking place during this period and stops it in its tracts, violently.
This is an action that is embedded in hospital’s culture all over the country, so much in fact, that it has never been questioned whether it is helpful or harmful for the patient.
I say use common sense on this one. It’s time for a change. It’s time for a lot of changes.