One of the most stressful elements of a cancer diagnosis is the financial impact that it can have on your life short-term and long-term. If you are lucky enough to have a good health benefits plan, often times you can claim disability insurance through treatment and beyond. However, for those who are self-employed, the collateral damage of a cancer diagnosis is financially and professionally devastating. We interviewed lighting designer and Rethinker Lesley in a two-part series to get her take on coping with cancer and surviving self-employment.
Being Diagnosed While Self-Employed
I was diagnosed with Grade 3 Breast Cancer in 2004. The treatments at Princess Margaret Hospital in Toronto, included six months of chemotherapy, two surgeries, four weeks of radiation with a one-week radiation ‘boost’ after the four weeks were completed.
Being self-employed certainly had its financial challenges once I received the diagnosis. My hope was to continue to work as a Theatre, Opera and Industrial Lighting Designer through the treatments if possible. When we are in production on a show, we work daily from 8:00 am to 11:00 pm for extended periods of time. I understood that the side effects from chemotherapy and radiation treatments might prevent me from working these long hours.
A Unique Set Of Financial Challenges
Since I owned a home I would have to continue to pay weekly mortgage payments, monthly utility costs, home insurance coverage, internet, phone and cable bills, etc. Prior to starting treatments, I researched government financial help options. As a self-employed artist I knew that I was not eligible for Employment Insurance benefits and I did not have private health insurance coverage. When I spoke to a Services Canada Centre representative I was told that I would have to sell my house, sell my car, cash in my RRSP’s, and have no savings in order for the government to support me. I was shocked and saddened to hear this since I had spent many years contributing to our Canadian culture as a Lighting Designer and a teacher of Theatre Lighting Design and Technology. Due to this lack of government support, I seriously considered selling my house prior to the start of my chemotherapy treatments. My Mom talked me out of this and promised that she, my Dad and my sister would help to support me. I was very grateful to my family for this help.
I knew that my family would not be able to continue to support me long term. I was also aware as a self-employed artist that my absence from the theatre world for a long period of time would be detrimental to my professional career. Therefore I made a decision to accept design contracts in Halifax and Toronto after I completed chemotherapy. This was a hard decision to make as my energy was greatly affected by the chemotherapy treatments and I knew that it would be challenging to work the long, pressure filled hours needed to complete a lighting design. Yet, I also saw these lighting design opportunities as a gift – a good escape from the world of cancer treatments, doctor’s appointments and clinic visits at PMH. My need to earn an income meant delaying the second surgery for a number of weeks which was not easy for my Surgical Oncologist to understand and accept. As it happened I designed the lighting for a concert at Massey Hall in Toronto the night before the second surgery, which kept my mind focused on things other than this surgery!
Although I did not sell my house while undergoing treatments, I knew that I would have to at the end of radiation treatments. I followed through with this and was grateful to sell my house to help with my financial situation. Due to the high cost of housing in Toronto, I was not able to purchase another house. I spent the next four years renting an apartment and in 2009, I was able to purchase a new condo in downtown Toronto. In order to make a reasonable down payment, I cashed in a portion of my RRSP’s, which I continue to pay off today.
Advice For Self-Employed Women Just Diagnosed With Breast Cancer
Ask for help and accept help:
Accept help graciously in whatever form it takes. Breast Cancer taught me to ask for help. I was continually amazed by the generosity of my extended family, close friends and work colleagues. I worked hard to understand that some family members, friends and work colleagues may find it difficult to help. Please try to not judge their decisions. I tried to find ways to stay connected that worked best for them.
If possible – try to keep your business running while you are undergoing treatment:
Seriously consider hiring temporary help to assist your business. You may have close family members or friends that you trust who could step in to help. Please take advantage of their support. You may also have a close business associate who can help when you are not able to complete the work.
Try to complete the large tasks at work prior to starting your treatments for breast cancer. If you decide to continue to participate in your business once you start your treatments it will be easier to manage the smaller jobs each day.
Remember to be flexible with your work schedule and try to work from home wherever possible. This will be very helpful on the days where you are not feeling well or may be low in energy. Work colleagues who know your circumstances will be understanding, supportive and adaptable.
Know your healthcare coverage:
Check your provincial and private health plan to familiarize yourself with the coverage offered. If you don’t have private healthcare coverage understand the different types of plans and options available to you and decide what supplementary health insurance you need. Familiarize yourself with what happens when you apply for coverage, when you make a claim and identify questions to ask the health insurer’s representative.
I did not have private health insurance when I started my treatments. I often had to rely on the chemotherapy nurses’ generosity in providing me with compassionate access to expensive and necessary prescription drugs that were not covered by OHIP. This meant that I would sit in the clinic at the end of my chemotherapy sessions, waiting to see the chemotherapy nurse and hope that the drugs would be available to me at no cost.
Research Federal Government, Provincial Government, Municipal Government and private sponsored financial options for lost income due to Breast Cancer:
Look closely at each level of government within your province to understand the assistance offered to self-employed women undergoing treatment for breast cancer. Also, research private foundations and organizations which may fund self-employed women.
Consult a financial advisor:
Meet with a financial advisor and look at options for accessing money, which you may need as you move through your treatments. Look at your RRSP’s, Tax Free Savings Account, Investments, etc. with your financial advisor to see how you can use your money to ease the financial burden of breast cancer treatments. Please be aware of any tax implications as you look at these various options.
Keep a file of your medical records from diagnosis to end of treatment:
It is wise to keep hard copies or electronic copies of your medical reports – including lab, drug, diagnostic imaging and clinical health information. In Ontario each specialist will have access to your Electronic Health Record and can print out hard copies or you can access test results etc. online. As recently as May, 2018 my medial records from 2004 – 2005 were needed to diagnose the long term side effects of chemotherapy.
You are your own BEST ADVOCATE:
Throughout your treatments you will be meeting with a team of specialists headed by your Oncologist. From your Family Practitioner to your Oncologist, Pathologist, Surgical Oncologist, Radiologist and Specialist Nurses – it is important that your needs be heard. So speak up so that your needs are heard, your rights are understood and your problems are resolved.
During my treatment I asked for a second opinion from a Surgical Oncologist. The Radiologist did not want to write up the order to make this happen. I told her that I would not leave her office until I was granted a second opinion. I sat for an hour waiting for this to happen, despite the fact that I felt nauseous from chemotherapy. I was glad that I got a second opinion, which allowed me to make the best decision for my treatment.
Your MENTAL HEALTH is important!:
Your life changes forever the moment you receive your breast cancer diagnosis. It is important to remember that our bodies are strong, resilient and have the ability to repair themselves. I am still amazed that we can have ‘toxic’ medicine administered through chemotherapy and that eventually our bodies begin to heal.
Stay tuned for part 2 when Lesley discusses resources for financial aid and what she learned through the process.
Lesley is a Theatre, Opera and Industrial Lighting Designer. She is currently working on launching a graduate level theatre design school in Toronto called ‘Design Incubator’.