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."

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Friday, October 16, 2009

Cancer Care Vs. Surgical Care

I have good and bad news all rolled into one.
Thanks for worrying about me, people.
You should have been worried. I have been miserable.
I’ve had an air leak from the insertion site that hasn’t seemed to improve. My pain was a little out of control, and I had difficulty receiving my medications to control my pain and then being able to move to rehab myself like I knew had to be done.
After any surgery which causes pain in the chest or abdomen there is an increased risk of pneumonia. The pain reduces a person’s ability to take deep breaths, and without the deep breathing, bacteria can accumulate.
People get what is called “atelectasis,” and their breathing is further impaired.
With me all ready having an infiltrate, which was the entire reason for having surgery, I was at increased risk for problems.
From Tuesday until this morning I wasn’t able to do my activities of daily living: getting out of bed, brushing my teeth, fixing my hair, washing myself, walking. I just didn’t have the strength, ability to breath, or pain control to get through.
I just didn’t have the help where I could say, “I’ve had my MSIR, 30 minutes from now I need help washing.”
I actually didn’t even get help when I was gasping for breath, grasping my chest after I’d get back from doing simple care, like brushing my teeth or using the bathroom.
I think they just had no idea what to do so they did nothing or even worse, they hightailed it out of the room hoping it would just go away.
Not being able to breathe is scary, not having intervention in a hospital is even scarier.
Worse yet, all I needed was to be given some oxygen to help me resume my normal levels. As soon as I was moved from the surgical floor to the cancer floor the nurse grabbed me oxygen tubing with extension so I could at a minimum move around my room freely.
WHA-LAW, I’m feeling better. I’m not so scared, because at least now I am reassured that after I move I’ll be able to breathe.
My stories of hospitals past began to haunt me lying in bed day and night.
I remembered how patients would call 911 from surgical unit because they weren’t receiving care at the hospital due to staff shortages.
I remember an NP telling me how Mt. Sinai lost their transplant license after a liver transplant on a surgical floor went into shock and nobody noticed his shakes, tachycardia, and fever before he went into cardiac arrest.
As for me, I lost the call bell when I was sleeping and woke up gasping for breath, screaming for help, and no one came for a half an hour. I couldn’t breathe or move because of the pain. I had no option.
I didn’t get a scheduled medication because it was written down as ophthalmic corticosteroid instead of restasis and the nurse didn’t get their were two names for the medication.
I had visions of me failing to thrive, malingering on this floor, my pain remaining the same and my lungs getting worse as I laid there for days, unable to move or walk, and no person with the time to help me.
The final straw came when my mom returned from Mass. and saw how sick I still was and then my nurse, with the my medical record book in hand, told me, not only that I didn’t have the medication I was asking for ordered, but that if he were to give it to me I would orverdose, and he’d be running for NARCAN.
I sat, flabberghasted, that he would speak to me the way he did, especially when I knew I had the medication I wanted ordered.
My pain control was very meticulously ordered and checked through all the specialties: anesthesia, a pain team, and palliative care.
Everything I needed was ordered, I just wasn’t receiving them due to nursing errors.
My she-bear momma had the charge nurse in my room within minutes and requested a transfer.
My needs as a cancer patient were superseding those of a regular surgical patient, and some of the staff just were unable to adjust and handle the added acuity.
It’s been difficult experiencing the dichotomy of care between a surgical floor and a cancer unit.
I’ve always been interested in things that are seemingly the same, or at least should be superficially: the hospital’s Columbia Presbytarian & Bronx-Lebanon, which reside less than 5 miles apart, the conversations between physicians & their patients vs. conversations with their collegues, and now, the difference in treatment between floors of the same hospital.
The social culture within all these examples differs so extremely you may as well be in a parallel universe.
It really saddens me how many people willing take advantage of others who are less fortunate, who are not able to speak for themselves, and do not have the strength to stand for their basic needs.
I wasn’t even able to speak for myself and I’m an advocate.
It’s a terrible position to be at the whim of a person who is in charge of whether you get out of bed to get to the bathroom or whether or not your pain is in control.
How could anyone then complain?
After my mother and I complained about the care I was receiving I was told I had to keep the very same nurse.
Needless to say, prior to my transfer, had I not called I would not have received my scheduled doses of antibiotics.
And no, they were not administered by the useless nurse who clearly had a chip on his shoulder to begin with.
Health care practitioners have the power to say yes or no to your health status. Not even I could rise up when I’m dependent and demand what I need, what I know is standard care, and risk possibly receiving none at all.
Since I’ve been moved, I’ve finally gotten a shower. I have gotten out of bed for a walk. My ambulatory oxygen levels were checked, and I’m doing okay.
My chest tube drain has been upgraded to something I could take home with me if the leak doesn’t clear.
I’ve improved more in the last 24 hours than I have all week.
I’m now at the point where I can probably be discharged.
I could stay, of course, since I’m still having shortness of breath for no known reason, but haven’t been fully healed before my discharge recently. I just leave for quality of life reasons.
I think that may just be what I do, soon.


Valerie said...

That is so crappy, Hillary. I'm speechless.

Anonymous said...

I am shocked and flabbergasted about your experience in light of all you have already been through these past years. Thanks for blogging during your most horrible experience so we can all learn about hospitals. So glad you are finally feeling better. I had a feeling that you were doing poorly when we had not heard from you in the last couple of days. I have a feeling today will be even better for you

Anonymous said...

As a nurse, I just want to say that I am sorry for the care you received. However, you have to know (and would, I would think) that what is expected of us sometimes IS more than we can handle, and it is often management/supervisors, not the staff, that are to blame. Maybe you should go further up the chain of command--you may get better results.

JANE OWEN said...

Anonymous nurse,

Your post just scares the hell out of me. I pray that there are not to many like you. I bet you wouldn't let someone you love go though what Hill went though just because they " would have to know" She was to ill to take care of herself. OMG Please step up to the plate.

I'm so afraid...


Anonymous said...

Unfortunately, one bad apple can spoil the whole bunch, as the saying goes. Hillary, herself, can attest that there are great nurses at DHMC, and unfortunately for her, she happened to be burdened with the one who was that particular apple. Based upon what I heard from both Hill and Nancy, the situation with this nurse was not "more than he could handle", but a choice that he made. Hill, you looked much better Thursday night than Monday night, and I am so glad that you have been moved to your "home unit". Look forward to hearing that you have returned to your real home soon.
Laura (and Doc)

Anonymous said...

just learning to comment.

Jessie O said...

I've never faced stakes as high as yours, but I'm constantly appalled by how much I need to advocate for myself to get what I need--when information (my chart) is at my care teams' fingertips. If I didn't know exactly what drugs I took and when--especially during my inpatient stays, I have no idea who would have figured it out. Frick, ARRA. Enough with the road improvements. Hire more nurses so everyone can start thinking clearly. Rock on Hilary. You kick my butt in a good way. You inspire me to keep demanding, keep insisting, keep knowing that i'm worth good care and attentive teams. And I can and WILL get real about it when people let me down and still be a good person. and you manage to look so cute doing it.

feel better!

Anonymous said...

Jesse is so right about being your own advocate even though the information is right in your chart. On one hand it is easier and quicker for a nurse to just ask a patient something than to scramble through a large chart of info but what happened to Hillary was so horrific - my father would be on the phone to the head of the hospital screaming. What happens when we get too sick to speak up. Hillary is lucky enough to have her mom show up and get the head nurse in on it. But what if we are alone. Dr. and Rn's seem to have a chart allergy. Even my gyn asks me the same family history every year and every year I give her the same information. One time I told her all that was already in my chart and she said it was just easier to take it again then to look at the chart - geeze.