Before You Start Treatment

1) Build Your Care Team

Choose your hospital/doctor

Cancer staging and protocols are universal, but doctors take small (and life-changing) liberties through the treatment process. It’s an art and not a science. We moved to New York to be at the best possible hospital with the best doctors for cervical cancer.

Reach out to the main phone line on hospital websites to set up consultations.

My best advice is to start when you’d want to end up - in the best possible care in case anything were to happen.

I would recommend choosing a hospital with a cancer-specific ER. Not all of them do, and it makes a massive difference if you need it.

Be realistic about clinical trials/concierge doctors

The majority of clinical trials are not available unless you’ve failed ‘standard of care’ treatment (likely chemotherapy and/or radiation). There is potential for ‘compassionate use’, n-of-1 care, expanded access, targeted trials based on mutations, but these typically become an option later, when you and your team know more about how your cancer responds.

Concierge doctors and experimental therapies can absolutely play a role, but they are not a shortcut around the hard part. Standard-of-care treatments are often the fastest path to shrinking or controlling the disease so that you even qualify for something more cutting-edge.

Consider second opinions

Cancer care and recommendations are all standardized nationwide based on the grading of your cancer, but some doctors may interpret your scans differently if you are borderline.

Make sure you get the actual slides from the lab to expedite review by other hospitals.

Designate your advocate and primary support person

Ideally, you will need one person who will be there with you for every appointment. Some hospitals offer patient advocates as a service. I found it very difficult to process or remember anything that doctors said during our meetings. They will provide notes after, but it’s helpful to have someone in the room with you at all times.

My mom primarily played this role for me and has been unbelievable, but my family also jumped in to support.

This person should be aware of your overall treatment plan and needs.

Ideally, this person can also help you manage medication.

Identify backup support roles (transport, food, meds)

You will need to consider how you get to the hospital and set up a system for meal trains and support.

Some friends have used CaringBridge and Meal Train for this function.

A lot of people will show up for you at the start of treatment, make sure you plan for midway and later in the treatment. It’s not that people don’t care; they just get busy with their lives.

Find a mentor with your cancer type

We were fortunate to have a few contacts who had also recently suffered from cervical cancer. It was very useful to have someone to trade notes with on their exact experience.

If you don’t know someone, I would recommend reaching out to Imerman Angels.

2) Reduce the Information Flow In

Mute the noise

There is a LOT of noise out there about alternative cancer treatments and cancer cures that do not have a scientific basis. Many of these treatments have not been proven effective and may not apply to your specific type of cancer.

Designate one friend or family member to field these suggestions (or set up a separate email account to consolidate these).

Chemotherapy and radiation may be barbaric, but they are effective and proven therapies.

There is a lot of intrigue about novel and new therapies, but they are not proven yet, and often not available until after you fail the standard line of treatment.

Do not go down a Google rabbit hole

Do not look at statistics. You are not a number. It’s helpful to be realistic about what you are facing, but do not let it define you.

I found it very helpful to reduce my intake of anything that wasn’t about my health or directly tied to my getting better during this time.

You don’t want to disconnect yourself from the world (see next section), but you want to take care of your mental state.

3) Control the Information Flow Out

Come up with a communication plan

I appreciate and understand the desire to go through this on your own. At first, I thought ‘I’m strong enough,’ ‘I’ve been sick before, ‘I can handle this, and so forth, but here are a few things I’ve learned along the way:

It could be much harder than you expect: Neither you nor the doctors will know precisely how you will handle each treatment round. Think about what you will need in the worst-case scenario. Think about how your friends may feel if you don’t share it with them.

People don’t know how to show up for you if you don’t tell them: Everyone wants to support, but no one knows how to unless you share what you need.

Helping helps the helper: People want to show up. It allows them to feel close to you and gives them a sense of purpose during a time when everyone feels powerless.

Plan for continuity

When you are first diagnosed, everyone will want to help, but to ensure people are there for you when you need them most, it’s crucial to provide frequent updates.

It’s helpful to have a friend at this stage who can jump in to provide updates when necessary.

Respect your energy

Worth mentioning that I found it exhausting to have visitors. I am usually a very social person, but I lost the capacity to hold space for others during treatment. I preferred to receive outreach digitally.

Establish your framework

There are a number of things to consider:

How will you deliver updates?

How can you manage conversations? You may not have the energy to manage conversations with all of the well-wishers.

What can your friends do so you know you’re loved and thought of during treatment?

Where do you need them to help you?

MY ‘WE LOVE LOU’ SUPPORT SYSTEM

My mom made sure that my core needs (appointments, food, errands) were met, so I just needed love, amusement, and support from my friends. I set my system up in the following way:

Substack - public updates, I find writing very therapeutic, and it calmed me down to know that if something adverse happened during treatment, my story would still be out there

WhatsApp - private updates. I created a WhatsApp community for my friends with multiple channels:

Announcements Channel - Admin posts only

I created a Google Doc with Cancer FAQs - all of the questions about my treatment, doctors, etc. that I didn’t want to talk about but that people often asked.

Moments of Joy (photos only, no text) - Everyone. I stayed off social media for the entirety of my treatment, so I loved this.

Poetry, Short Stories & Other - Everyone. Space to share short poems or short things to read.

Resolutions - Everyone. I thought it would be fun if anyone wanted to take on challenges alongside me.

Lou Flock - NYC/SF - Everyone. City-specific groups for local friends to convene.

4) Prepare Your Home for Healing

I liked having different ‘spaces’ around my home where I could go to make it feel like I was moving around, even though I really didn’t have the energy to move far. This is what helped me a lot:

Bed

Soft sheets: Your skin may get very sensitive. Avoid anything scratchy. I prefer soft linen sheets.

Noise machine: Someone gave this to me, and it was a godsend for NYC

Eye mask: I love to sleep with a loose weighted eye mask to calm me down. If I’m traveling or in the hospital, I also have one that fastens to my head to block out light.

Weighted blanket: It’s been a game-changer for me to reduce anxiety.

Heating pad: Comforting during cold spells from anemia

Bathroom

Maternity pads and diapers (cervical cancer only). I bled a lot.

Non-scented organic lotions and creams. I became more sensitive to scents during treatment.

Aquaphor for radiation burns.

Soft toothbrush. I found that my gums got more sensitive.

Dry mouth mouthwash: Some chemos give me dry mouth, so I recommend staying ahead of this to avoid mouth sores.

Ditch the razor: Certain chemotherapies cause you to bleed more heavily, so I avoided shaving during treatment.

Space to watch TV

FIELD NOTE

_I thought I could get through cancer just by reading, and that was a colossal mistake. I spent a lot of time watching TV. I loved the Great British Baking Show, Derby Girls, Gilded Age, and Drops of God._

You want to find a mix of shows where you don’t need to follow the plot and ones that are fully immersive, depending on how you’re feeling.

Space for projects/reading

It’s nice to have an outlet. Painting supplies, drawing supplies, journaling stuff. I barely got through a whole book, but I liked being able to read part of a chapter of something whenever I had energy.

5) Set Up Your Daily Logistics

Establish a plan for transportation for every appointment

Ensure you are always covered with support at every appointment, ideally from your advocate or friends.

Meal support

Set up a meal train or grocery service. Make sure you are stocked with bone broth and other comforting and nutritious foods.

Medication organization

I keep my meds instructions in the Notes app of my iPhone, but a shared Google Doc with your advocate could also be helpful here.

You will likely be given several different types of medicines for side effects.

Pillboxes help you stay organized.

Prepare your ER “go-bag”

I was at the ER every week during my first round of treatment, and barely went during my second. I think it’s variable, but it’s best to be prepared.

Regardless of the reason for your visit, it will likely be a lengthy stay. My hospital had a dedicated ER for cancer patients, which made a massive difference for me

Have a bag ready to go with core essentials:

Noise-cancelling headphones

Something to entertain yourself: Books to read / iPad to watch movies/computer / audiobook, or podcast

Ginger nausea chews

Snacks, protein bars

Fuzzy socks

Blanket (optional, they will give you one, but I like to have mine for comfort)

Overnight essentials (you never know): Eyemask, Toothbrush/toothpaste

Wear comfy clothes. I lived in my cancer uniform (next section).

6) Body Prep

Egg freezing

If you wish to have this future option, doctors will recommend egg retrieval as soon as possible, so as not to delay treatment. This, unfortunately, was not an option for me. But here are two places that we found along the way: CCRM Fertility, Chick Mission

Get your cancer uniform

I lived in sweatpant sets and simply rotated through multiple colors. It was a great relief not to have to think about what to wear, and also to wear something that could be easily washed.

Ideally, you want something that doesn’t have metal anywhere (so you can just wear it straight into radiation appointments)

I did not get a port in the first round, so it was just important for me to be able to roll up my sleeves easily for IVs

For the second round, when I had a port, I wore low-cut tank tops and a cardigan.

Decide if you need a port

FIELD NOTE

If the option is given to you to get a port, I would recommend it. I didn’t get one, and knowing what I know now, I wish I had.

I ended up needing a lot of blood transfusions and additional hydration, and every single time, I required a new IV stick. By the end of treatment, my veins were scarred and difficult to access; nurses sometimes needed 3-4 attempts to find a working vein.

A port is a small device (about the size of a quarter) placed under your skin, usually just below your collarbone. It connects to a large vein near your heart. Once it heals, you barely notice it’s there, and you can shower, swim, and go about your normal life. It requires a minor surgical procedure (outpatient, usually local anesthesia with sedation) and carries a risk of infection or blood clots.

Do a photoshoot (I’m serious)

I did two photo shoots before I first started treatment. I wasn’t sure what I would look or feel like after. It may seem very silly in the moment, but it helped me a lot mentally when I was at my worst to know I had documented my past self. When I lost my hair, I also did another photoshoot to remind myself that I could be beautiful in any situation.

Find a masseuse

Find a masseuse with oncology experience. They need to be gentle, and it’s best to check with your oncologist before getting a massage, but it helped me a lot.

Find an acupuncturist

Acupuncture helps minimize the effects of treatments significantly. I’ve used it to reduce nausea, neuropathy in my hands and feet, increase my energy and strength, and so forth.

Get ice booties and gloves

Not every chemotherapy causes neuropathy. Check with your oncologist to see whether yours does.

To prevent this, I wore booties and gloves filled with ice packs during relevant treatments. These can be purchased on Amazon.

Prepare for hair loss (if relevant)

Not every chemotherapy causes hair loss. For the ones that do, hair loss typically begins 2-4 weeks after your first chemo treatment. Ask your oncologist what to expect with your specific regimen.

COLD CAPS

I chose not to wear a cold cap for a couple of reasons:

It added significant time to my therapy

There was still less than a 50% chance of my keeping more than half of my hair. I preferred to be completely bald rather than to have random bald spots.

WHAT DO YOU DO WHEN IT FALLS OUT?

When I made a decision not to have a cold cap, I cut my hair short before treatment started. It helped make the transition less jarring.

When hair dies, before it falls out, it becomes straw-like. It’s incredibly unnerving. Try not to touch it too much and wash it with gentle shampoo.

About four weeks into my treatment, I decided to shave my head. I found it to be incredibly liberating.

WIGS AND HEAD COVERINGS

Your head will get cold without hair. I often wear a hat when I go outside as a result.

If you want a wig, get fitted before you lose your hair so they can match your natural color and style.

You ideally want a human-hair wig versus acrylic (most costume ones)

The wig should fit snugly with a velvet band. Custom wigs can be made with different cap sizes, depending on the size of your head and the length of your neck

EYEBROWS, EYELASHES

I’ve found that I can get away with being bald without looking sick as long as my eyebrows and eyelashes are strong enough.

I recommend getting a brow pen that matches your hair color

Your hair will fall out in stages, so you have time to practice how to apply realistic hair strokes. It doesn’t happen all at once.

I have not had much luck with fake eyelashes, but I have found that eyeliner helps.

7) Build a Safety Net

Create your mental bubble

Do whatever you need to do to mentally put yourself in a bubble. The treatments are brutal, but you are fighting the same war as chemoradiation.

CALMING MUSIC PLAYLISTS

I love ambient: Nils Frahm, Brian Eno, Hiroshi Yoshimura

Plant music playlists

RETURN TO YOUR BREATH

Box breathing

Meditation - I use a couple of different apps (for different purposes):

Joe Dispenza (you can buy meditations online)

Expand by Monroe (go-to for meditations, they have several health-specific ones)

Calm (bedtime stories, emergency calm meditations)

Waking Up (philosophical discussions on life)

Identify therapist support early

If you don’t already have a therapist, I think it’s essential to find one, especially one with experience with cancer.

I was too exhausted to speak with mine for most of the treatment, but was very grateful that they checked in frequently.

Establish spiritual / church connections

It was a great help to know that I was in people’s prayer circles and to have someone to speak to about spiritual matters.

If you’re not well enough to make it to a church, most churches offer livestreaming.

8) Prepare to Stay Proactive, Not Reactive

Speak up early, often, and loud if needed

You are the expert in your experience. If something isn’t right, speak up. Here are some examples of how:

Bring someone to appointments who takes notes and asks questions

Track symptoms daily

Ask “What does success look like for this round?”

Know your escalation plan: “What gets me sent to the ER?”

Understand when to expect scan results and decision points

Advocate for comfort (nausea, pain relief, hydration. Don’t suffer in silence)

Start parallel path planning

Stay proactive about the path ahead. Ask a friend or family member to help you here.

You can pursue the best treatment now and quietly plan for what may come next.

Get genomic/tumor testing done early.

Keep a running list of trial options for later (many require standard of care first)

Build relationships with specialists and researchers in your cancer type

Revisit options each scan cycle

Treat the cancer you have today. Prepare for the cancer you might be facing tomorrow.

9) Quick Start Checklist

Choose a care team

Advocate assigned

Second opinion + slides requested

Communication plan active

Home comfort zones set

Meal + transport support arranged

Med organization system working

Go-bag packed

Emotional/spiritual support in place