Chemotherapy side effects greatly improved with help from "palliative care" - "Palliative care" is amazing! - Encounters and background

I am currently in the middle of my 4th cycle out of a total of 6 cycles of chemotherapy. This treatment is by no means easy, and I am troubled by side effects every day.

In the midst of this, I had one of the happiest experiences since being diagnosed with cancer. That is, this time the side effects, which had only been getting worse, were significantly reduced by having a palliative care doctor prescribe medication for me. I would like to introduce the background of how I met the palliative care doctor.

First, I will introduce the current state of my treatment.

I am currently a double cancer patient with stage 3 ovarian cancer and stage 2 endometrial cancer. I have undergone a total hysterectomy and oophorectomy, and I am currently in the 4th cycle of TC chemotherapy.

Before starting chemotherapy, I was told that side effects would begin to appear 3 days after the infusion. My case was no exception, and I experience very strong numbness in my hands and feet from about 3 days to 2 weeks after the chemotherapy infusion.

With each cycle from the 1st to the 3rd, the numbness worsened significantly. Each time, I suffered every day from the fear that I might become unable to walk.

Worsening numbness in hands and feet and the physical and mental burden

In the first cycle, it was just mild numbness and a dullness of sensation. However, it worsened as the treatment progressed.

The tingling pain felt in the fingertips and toes gradually became stronger, and especially when going down long stairs at the station, I go down step by step, taking my time while holding onto the handrail so as not to lose my footing, because I go down without any sensation from the knees down.

From the soles of my feet, which bear my weight, up to my knees, it feels like I am wearing thick socks of tingling numbness, and when my knees lose their strength, I worry that I might not be able to control my feet well to place them on the step below when going down stairs, and I am gripped by the fear that I might tumble down the long stairs.

My family tells me that I should just stay home and not go to work or my children's school events, but I want to go no matter what, thinking that I might not be alive to see my children's next sports festival or school festival.

Part of me was keeping my sanity only with the desire to work as I have until now and pay for my children's school expenses even for one more day.

In such a situation, when the numbness in my hands and feet became severe and it became painful to walk, the anxiety that "I might never be able to walk again" weighed heavily on my heart.

Keeping a record in a diary

Since I started keeping this note diary so as not to forget the pain and anxiety I feel every day since I found out I had cancer, I tried not to miss any changes in myself by recording the intensity of the pain, the location of the numbness, and my daily physical condition and emotions in detail.

What I realized after actually writing the diary was that although I kept complaining to my attending physician and the palliative care doctor that the numbness in my hands and feet was "painful, painful," in reality, it was not "pain" but the "numbness" that was painful.

When I had an interview with the palliative care doctor during the 3rd cycle, I conveyed to the doctor and the nurse in detail how it was painful based on my diary, and I also conveyed that my attending physician had told me, "If you can consult with palliative care about some measures before the 4th cycle of chemotherapy, it might be easier to get through the 4th cycle. Please consult with the palliative care doctor thoroughly."

How I kept the records is recorded in the YouTube video above and in the diary below.

What is palliative care?

Palliative care is medical care that aims not to treat the disease itself, but to alleviate the patient's pain and symptoms and improve their quality of life.

The National Cancer Center website states: 'It is an approach that improves the quality of life (QOL) of patients and their families facing problems associated with life-threatening illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.'

How I came to visit the palliative care outpatient clinic

In my case, after my total hysterectomy and oophorectomy, when the anesthesia wore off, I was in such agony that I was writhing in pain even though it was still more than 6 hours until I could take the next painkiller. My attending physician consulted with a palliative care doctor to find a painkiller that would work for me, and that was the start of me receiving regular palliative care consultations since my surgery.

Specifically, during chemotherapy, I have consultations with my attending physician on the day of chemotherapy administration and two weeks later during the bone marrow suppression period, and I also have appointments for palliative care on those same days.

At first, I thought palliative care was something you only received when cancer had progressed to the point where it could no longer be treated, so just saying I was going to a palliative care appointment made me feel like I was being told I had terminal cancer, and I felt gloomy on my own.

Also, at first, I was sometimes unsure about what I should consult them about, but little by little, I became able to consult them about my pain and suffering separately from my attending physician, and they have been a great support to me.

Palliative care consultations and medication prescriptions

I had been receiving regular palliative care consultations from my surgery and hospitalization until the 3rd cycle, but no medication was prescribed, and the consultations proceeded with me seeking advice on how to improve things like numbness.

At the consultation before entering the 4th cycle, they listened sincerely as I strongly complained about the numbness with notes in hand, and for the first time, we decided to try medication.

The progress after taking the medication is as follows.

State of numbness in hands and feet during the 4th cycle

• Day before chemotherapy: Take medication: Numbness in hands and feet is the same as always

• Day of chemotherapy: Take medication: Numbness in hands and feet is the same as always

• 1 day after chemotherapy: Take medication: Numbness in hands and feet is the same as always

• 2 days after chemotherapy: Take medication: Numbness in hands and feet is the same as always

• 3 days after chemotherapy: Take medication: Numbness in hands and feet is the same as always; as usual, it feels like the numbness is starting to get worse around this time

• 4 days after chemotherapy: Take medication: Numbness in hands and feet is the same as always, but it is not getting as strong as it usually does

• 5 days after chemotherapy, taking the medication - Numbness in hands and feet, which usually gets stronger at this point, did not get stronger.

• 6 days after chemotherapy, taking the medication - Numbness in hands and feet, which usually gets stronger at this point, did not get stronger.

• 7 to 10 days after chemotherapy - Taking the medication, numbness in hands and feet, which usually gets stronger at this point, did not get stronger.

For the 4th cycle, I started taking the medication prescribed for numbness in my hands and feet from the day before chemotherapy.

Since I started taking this medication, the numbness in my hands and feet from the chemotherapy has gradually improved.

Changes and crises averted

I had assumed that side effects would accumulate and become more severe with each cycle, so I am realizing the effectiveness of palliative care as the numbness in the 4th cycle has been significantly reduced compared to the 1st through 3rd cycles.

The fact that my symptoms improved as the cycles progressed brought me a great sense of relief. As the treatment progressed, my mental state was also weakening, but thanks to palliative care, I gained hope that I could overcome this pain.

Chemotherapy is extremely difficult both physically and mentally, and anxiety about side effects is a heavy burden. However, I realized that by working with palliative care specialists, side effects can be greatly improved. It was an experience that taught me that not enduring pain or anxiety and seeking appropriate support is a great help in getting through the course of treatment.

Living with cancer will be a long road ahead, and while I don't think the situation will improve even if it doesn't get worse, I want to extend my comfortable time as much as possible with the help of those around me.

Thismagazineis a record of my daily life and my family's life after I was diagnosed with ovarian cancer and endometrial cancer at age 49. Living with my daughter (1st year of high school), daughter (2nd year of junior high), husband, and a cat. A working mom. I am trying to figure things out every day, hoping to keep my life healthy for even one more day.💦
▼ My cancer battle records are summarized in the magazine below.

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