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Elaine Stewart



  6 years ago, May 1st, 2014, was the day we got the news that my healthy, active and very fit husband Larry had stage 1 lung cancer. It was a huge shock!! He was a never-smoker and in fact hated smoking. Once over the initial shock, I thought, well we are lucky, they found it early and a right upper lobectomy will take care of it.  
 
The robotic surgery went extremely well and he was out of hospital in three days, however, it turned out to be a lot more complicated than that. Since the cancer was situated right against the wall of the pleura, our oncologist at the Juravinski Cancer Center suggested four months of doublet chemotherapy. My husband decided that he wanted to do that. That is when it became clear to me that being a caregiver to a cancer patient is very challenging.
 
The side effects of chemotherapy were hard for him to cope with. Constipation, low blood counts, extremely low magnesium, fatigue and loss of appetite were his main complications and he needed 4 hour IV infusions of magnesium every other day. What ensued was a fight with CCAC to set these infusions up, and two very unpleasant visits to the emergency room. I quickly learned that there is a total disconnect between cancer care and what actually happens to our loved one when they are in emergency. 
 
Since I am a retired medical technologist, I learned how to remove stitches, give injections, and set up my husband’s magnesium IV. I did this so that things could be done at our convenience instead of waiting for home care to show up. I was fully supported in this by our wonderful home care nurse from St. Joseph Hospital in Hamilton.
 
What followed was a one-year clinical trial of an immunotherapy drug. We were still being followed by this trial and during a follow up, at year three, a second lung cancer was discovered. A wedge resection of the right lower lobe was performed, again by robotic surgery, and he was home by three day.
 
Because of another clinical trial a stump clot was discovered, and three months of heparin injections followed. A follow up CT scan in 2018 because of the clot turned out to be the worst day yet of our cancer journey. There were now tumours in his left lung and one brain met. He was now stage 4 and we were stunned. This cancer was different from the first one. It was EGFR positive, Exon 21, L858r. He immediately started on afatinib 40mg, in hopes that it would take care of the small brain metastasis.
 
The side effects were bad; diarrhea, fatigue and lost of appetite. This led to a week in hospital with potassium so low the doctor thought his heart might stop, and his kidneys were not functioning well. But the afatinib did the trick, the follow up MRI was clear, and has stayed cleared for 18 months now. The dose of afatinib was reduced to 30 mg and he is still on that today. Side effects have been minimal with occasional bouts of diarrhea, a mild skin rash and a runny nose. 
 
COVID-19 brought us one of the scarier times in my husband’s journey. He had a retinal stroke on April 1st and we ended up back at the Juravinski Hospital emergency room. I am the one who has all the medical information, but could not go with him due to the pandemic.  I had to wait in the car from 4:30 – 10:00 pm. My husband was eventually admitted into a ward room with three other people. No one was wearing PPE, not the doctors, nurses, cleaning staff or food service providers. All of these people were moving in and out of the room with no protection. Having really only one lung and being 80 years old, he was at very high risk to get the COVID-19 virus.
 
I wondered, Why was he admitted? Why was he not worked up as an outpatient? Why was he not on the cancer ward? Why was he not in a private room? Why was he not given a script for a blood thinner and sent home?  Again, we experienced a total discard for his cancer by ER doctors.   
 
For the most part we can do the things we want to do, or could until COVID-19 invaded. We have great support from our children and a small but dependable group of friends whose company we enjoy and miss now. We both joined a gym and find exercise and fresh air to be good for the body and the soul. During this six-year journey, we have continued to travel and taken 4-5 cruises.
 
We are also very grateful to the Canadian Health Care system that the most we have had to pay out of pocket is for parking and that this journey has not forced us into bankruptcy. 
 
There are times, however, when I wish there was someone who was in my same situation with whom I could talk about issues that concern caregivers, because all the focus of support is really on the patient but cancer doesn’t just affect the patient, it affects the whole family. The fact that my husband looks healthy and strong doesn’t ease my anxiety. There have been countless sleepless nights wondering how I will manage financially without his pension, and without the stability he brings to our family and me.
 
My one wish for the future is that GP’s will keep lung cancer in mind as a diagnosis for non-smokers so that they can be diagnosed at early stage where surgery can be curative instead of Stage 4.