I am a 60 year old breast cancer survivor. I was diagnosed with Stage 2A carcino sarcoma of the breast, underwent mastectomy, 6 cycles of chemotherapy and 16 rounds of radiation. There were many difficult challenges along my cancer illness journey. I went to many of my appointments alone as loved ones could not leave work to accompany me. I spent many daytime hours alone and feeling generally unwell.
I had several life threatening treatment complications during treatment including: cellulitis forming in my mastectomy site 3 weeks after surgery; a blood clot in my left chest before my first chemotherapy treatment; four bouts of febrile neutropenia (life threatening low white blood cell counts with infection and fever); and chemo complications including two episodes of thrush; acid reflux; and a malfunctioning port.
When my daughter was getting married after my first chemotherapy treatment and my son and his wife were moving into their first home, I was too sick to enjoy either experience.
I was also placed on six weeks of house isolation during my last two cycles of chemotherapy because I was so infection prone.
After treatment I had to deal with post treatment complications from surgery and radiation. I continue to live with permanent damage to my right torso from cut and radiated tissues impairing my strength, range of motion and flexibility. Because I had cancer, I lost my corporate job and was forced into early retirement. As well, several years after completing treatment I was diagnosed with cancer PTSD.
I also live with some cognitive impairments caused by the treatments, including short term memory loss, the inability to complete math calculations without mistakes, and the daily reminder of the after effects of cancer when I look in a mirror. I live with the fear of recurrence every day.
Explaining what it was like to go through a cancer journey and living as a survivor with permanent treatment complications is lost on most people, including family. The only people who truly understand what it’s like are other cancer patients who have been through similar experiences
My advice for others is ask a lot of questions of your healthcare providers so that you truly understand what is being discussed with you. When possible, use the services of a nurse navigator or educator. Lean on the nurses who are assigned to your doctors for advice and help. Use people who are available—such as dieticians, psychosocial oncology counsellors, family and friends—for emotional support. If recovery/therapy courses are offered in your area, enrol in them. When possible, take someone with you to medical appointments as a second set of eyes and ears to record key points of the conversation. If you are provided the option, take up on the offer to record the discussion if you are comfortable with “reliving” the discussion later. You cannot control how your body is going to react to toxic chemotherapy, so be prepared for complications and bone up on knowing what they may be so that you are prepared to recognize what they are if you are encountering them. Expect the unexpected when undergoing cancer treatment.
Complications arise that you were hoping to avoid. If you are unable to eat, eat anything that you can tolerate for sustenance. I ended up living on toast, scrambled eggs and mashed potatoes because that’s what agreed with me.
The silver lining in my cancer cloud has been to take my lived experiences and use them to improve healthcare for other cancer patients. Healthcare change comes slowly but I know that I am making a difference in giving voice to improve cancer care for patients who feel they have no voice.