Still in Treatment Bells

Yes, the title is correct. I have read a number of End of Treatment Bell posts over the years. This one has a twist.

Today’s post may be unpopular and upset women and men dealing with metastatic cancer. I am sorry if my words cause distress. There is enough of that in your life and mine. I welcome respectful comments and will respond respectfully in turn.

For those readers who aren’t familiar with an end of treatment bell, it is a bell rung by patients at the end of a final treatment to celebrate the occasion.

If you are a new reader, it’s important to know I’ve had metastatic breast cancer from the start of treatment back in 2012.

Prepare for Controversial View #1.

There was a time when I actively advocated for bringing one of these bells to my treatment center. I supported it for others even though I had metastatic cancer. Even if I would never ring it, I wanted others to have the opportunity. I truly didn’t think hearing it would bother me. I thought I would equate the sound as hope for someone’s future. My intentions were good. I didn’t understand the arguments I read from others because my perspective was different. My plan was to set benchmarks in time and ring it purposefully at those points in time.

I didn’t understand.

I have read. I have reflected. I have changed my opinion. I am deeply sorry I haven’t understood and that it’s taken me longer to get where so many are in their beliefs. I was wrong. I am grateful that the idea for a bell was rejected.

I was told no for the exact reasons so many others have mentioned: Some patients would never get to ring it. It would not be sensitive to their needs.

I have read other reasons on social media from those who do have to hear the clanging of end of treatment bells where they receive treatments and these brief accounts have been gut-wrenching to read. There is trauma in the sound that is beyond painful and harsh. One description compared it to being kicked in the teeth. My perspective has changed. Hearing these bells now would make me feel discouraged, depressed, and envious. One person’s celebration would be my despair. I would not feel good about these feelings or thoughts.

I believe the initial intentions of these bells were good, but also that the decisions were not well thought through and inclusive of all patients. The repercussions have not been positive for everyone. I haven’t read anything about end of treatment bells being removed from treatment areas that have them.

Prepare for Controversial View #2.

Ring the bell.

Ring the bell every chance you get. Ring it when you arrive at your office visit appointment, after your office visit, when you enter the treatment area, and when you finish treatment.  Ring it SEVERAL TIMES DURING ONE VISIT. Ring it because it wasn’t intended for us. Ring it because we weren’t valued in the decision.

My point is if they can’t see us (those with metastatic cancer often are the unseen patients in news or fundraiser campaigns), then we are going to be heard every opportunity we have.

Change the meaning of the bell. It would either become meaningless because we are removing its purpose . . . or something else could happen. Is it completely crazy to think over time a shift could occur where the only people ringing the bell would be stage IV metastatic patients? Could ringing it become a reminder that 30% of patients will become metastatic if more research isn’t dedicated to more effective treatments, medications, and a cure for us? Could it be recognition that 10% are already metastatic at the time of diagnosis?

There are die-ins. Protests. There are many forms of advocating for change. A Still in Treatment Bell could be one more way to use our voice.

Does changing the word end to still make you feel differently or pretty much the same?

Ringing the bell would likely not be welcomed. Good. Let more research happen and then maybe no one has to hear it ring. I really don’t want to ring it but I will ring it with a vengeance if one ever appears where I receive treatment.

I imagine I’d shout, “MORE FOR STAGE IV” as I ring the bell. No rhyming poem. No plaque. No explanation. Just a clear and emphatic shout for what is desperately needed.

I imagine I might be told:

“Please don’t ring the bell. It’s for end of treatment survivors.”

“That bell is not for you.”

“The other patients feel uncomfortable with the constant ringing.”

“You are ruining it for other patients.”

 

How I’d hope to respectfully respond:

“Wouldn’t it be something if no one had to ring the bell? More research is needed for all of us. MORE FOR STAGE IV.”

 

Cancer has changed me. There are times I feel like I’m going nuts. Maybe I need to embrace it and live more of the way I feel.

What does that mean?

It means I should bring my own damn bell to ring at treatments. Maybe I will.

 

Consider responding:

  • How have conversations you’ve had been received in places where bells are present?
  • What are your thoughts on still in treatment cymbals?

Nifty Fifty

Today marks my 100TH post! Numbers are significant in my life. There are lab numbers. Survivorversaries. Birthdays. I remember dates for all sorts of events in my life.

Two numbers of significance in my life are 50 and 50,000.

I will celebrate my 50th birthday in 2020.

Yes, there will be a party.

I am raising $50,000 for metastatic breast cancer research at UW Carbone to celebrate such an important milestone in my life.

Today, I take the opportunity for some self-promotion devoted to achieving my goal. I would call it selfish self-promotion, but that’s only partly true. It’s true I’d love to benefit. The funds raised will all go to research and that hopefully means many will benefit. Most of today’s blog highlights information on my fundraising page. If you haven’t seen it, today’s the day.

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My goal: Raise $50,000 For

Stage IV Breast Cancer Research

To Celebrate My 50th Birthday

 

My Diagnosis

I have been living with cancer ever since my diagnosis on March 14, 2012. Tests, scans, and biopsies were thrown at me one after the other in quick succession to determine what stage was to be attached to my diagnosis. On April 13, 2012, the day I started chemotherapy, I learned I was stage IV.

Facts and Research

Stage IV cancer means cancer has spread, or metastasized, to an area other than the primary site where it originated. Breast cancer that is contained to the breast and is stopped there doesn’t kill people.

Metastatic cancer kills people.

The facts are:

  • 10% of patients already are stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits . . . unless you know precisely where the money is directed and for what purposes. That leaves too many breast cancer patients feeling isolated, forgotten, or that our lives aren’t worth as much as early-stage lives.

Putting more funds toward research, more treatments, and more options for stage IV lifers benefits ALL breast cancer patients. 100% of donations to Nifty 50 directly benefit metastatic breast cancer research at UW Carbone.

The UW Carbone Cancer Center

Thank goodness for the UW Carbone Cancer Center. The UW Carbone Cancer Center where I receive all my care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will always receive quality care and the best treatments available.

Initially, I received 12 cycles of chemotherapy for six months. I took several different anti-cancer and oral chemo pills for several years afterward. For the past three and a half years (and counting) I’ve gone back to more formal chemotherapy treatments and infusions. There have been over one hundred of these. I will have more. I need more.

My Mission

Part of my purpose is to change perceptions on stage IV cancer. People are living longer and stronger with this awful disease thanks to continued advances in cancer research . . . research that must continue.

I have created a space for myself where I focus on living in unrelenting wellness. I do my best to disregard medical timelines and ignore medical statistics. I strive to think outside the medical box and I’ve developed a mindset dedicated toward surviving, thriving, and living well with cancer. I live and lead by example. I work hard to be active whether it’s summer or winter, rain or shine.

My mom passed away from metastatic breast cancer in 2013. She would be very pleased with how well I’m doing today.

I know I will always be in treatment.

When one treatment fails me, I need to move on to another one with the hope it will be more effective and effective for longer.

Research equals hope. Research, however, is extremely expensive.

I am hopeful cancer researchers are on the cusp of making the next great breakthrough in treating, and eventually curing, breast cancer.

I am always hopeful.

Go to my Nifty 50 page to make a secure donation.

DONATE HERE

Thanks so much for your support.

Patients Have Names

I transferred from a smaller cancer clinic setting to a cancer center in a major hospital late last summer. I still believe I am getting excellent medical care.

There are some differences, differences I don’t like. They stem from the sheer newness of my experiences and the size of the cancer center. In time, the newness hopefully will feel more familiar. The gargantuan feel of the hospital maybe will feel smaller as I’ll only go where I need to be.

I’m not so sure about the size. There are two waiting rooms for labs. I’m given a pager that lights up and vibrates when it’s my turn like the ones used in restaurants when your table is ready. Sure, it’s a way to keep things moving quickly and it provides some privacy, but I have a perfectly usable first name. Then I go to another level for the breast center clinic where I wait in another waiting room. After the office visit, I trek upstairs again and get comfortable in a third waiting room where I wait for treatment. I check in at some type of reception area each time. So far, I have had moderate to long waits in each of my waiting rooms with no updates as to how much longer I’ll be waiting. I took my time between waiting rooms two and three last time and went to the germateria for lunch. I still had a good wait when I made it to the last waiting room.

I feel confident about the growing doctor-patient relationship I am developing with my new oncologist. It’s different from the one I had with my former oncologist, but it should be as she is a unique person. Oncologists are not one size fits all just as patients are not.

The treatment area is where I’m identifying more of a repetitive insensitivity issue.

It’s less personal. An identification bracelet is strapped on and it’s scanned to populate my personal information. It beeps. Every time. I hate that bracelet. It’s one of many factors that make me feel like I’m an illness. I will move past it.

I have a name and I’d like for my nurses to use it.

On my first visit there, the nurses noted it was my first treatment so I needed to be watched for a possible allergic reaction. No, it was only my first treatment at that facility. It was my 10th with this protocol and my 109th overall. For whatever reason, this important data wasn’t coming up. It’s a distinction I happen to think is worth knowing and should be correctly documented. Could just be me. Talking to me, bringing the patient’s voice into the discussion provides meaningful, not to mention accurate, information.

I know I have to give up comparing how my new place is different from my old place, but I never had to wear an ID bracelet in the old place. Everyone knew me. They took a genuine interest in me. We knew things about one another’s lives on personal levels. If an appointment needed to be changed, I was called. Here, I get a letter informing me appointments have already been changed without consulting me if the changes work for me.

Patients also have telephones by the way. It’s a good thing I’m not working and have a little more flexibility.

There’s more. Most of the nurses just swing in and out of my treatment cubicle and it’s all business. Some tell me who they are; some do not. Some are friendly; others not so much. I usually have more than just one per visit because they are running around caring for multiple patients at a time. I’ve asked for their names. My bracelet gets scanned and apparently that’s sufficient.

I have a name.

I am more than my ID bracelet. I am not a number. I am not an illness, and I am so much more than a patient. When multiple nurses shuffle in and out, it makes me feel like I’m not assigned to any nurse specifically. I feel like I’m an inanimate object on an assembly line. Truthfully, I feel a little bit that way when I have to visit three different areas on one visit. I feel that way when I’m not consulted about appointment changes. Asking if bigger is better in terms of patient care is a whole other topic.

I have had a couple of very friendly nurses. They visit with me and I do feel like I’m starting to get to know them and build connections. Personal connections and positive relationships make my health care better. I know their names. I recognize them. It helps me feel like I belong. Patients have names and it’s not unreasonable for nurses to use them. I empathize that they are spread thin and have a lot on their plate. I get that a lot is asked of them. I know from visits with my nurse friends at my old place how they are often left out of the loop with decisions that affect them. I know that more and more is being asked of them and that they have to do more with less. I know that some of these decisions don’t put the interests of the patients first. I know they referred to me as family. I felt the same and I miss them. I know all their names (Karen, Sue, the two Brookes, Kari, the two Ambers, Amanda, Sandy, Kay, Kelly, Justin, Nina, and Beth).

Is knowing a patient’s name too much to ask? I don’t think so.

As a teacher, calling a student by their name lets the student know you recognize them, that you care about them and their success, and it fosters a sense of trust. Students feel comfortable and, oh, I don’t know, it has a positive impact on learning. If I were a parent, I would not want my child to have a teacher who didn’t know their name. I would like my nurses to know who I am. I believe being recognized, feeling cared for, and trusting your healthcare providers will have a positive impact on care given and care received.

Going forward, I will be proactive and introduce myself, letting my nurses know that using my name makes me feel valued. I won’t be able to change the three different areas I visit when I’m there. I won’t be able to change how long I wait. I won’t be able to ditch the ID bracelet. I may not even be able to do much about whether nurses take my encouragement to use my name. All I can do is try.

Update: Most of this post was drafted about one month ago. My past two visits have been more positive in terms of my interactions with my treatment nurses. Situations change. I hope mine has changed for the better. I could have chosen not to publish this post, but I went ahead with it because it’s important to remember patients aren’t numbers, or statistics, or are treated like part of the equipment we are hooked up to when receiving treatment. We are people. We have feelings. We have names.