After my issues with wound care, I want to share an update about my journey. I was released from the hospital with clear instructions on how to take care of my wound. I also had an appointment to see Wound Care the next week. On Thursday, I received a call about a cancellation. The nurse offered me an earlier appointment on Friday instead of Sunday. I quickly accepted the chance to see a professional. I thought I was doing okay, but having someone check my wound gave me reassurance that it was healing well.
I saw four different nurses over the next six weeks. Each one had a different approach to dressing and the education that they emphasized. They each took pictures to ensure continuity of care as well.
They gave me lots of advice on how to provide additional care. One included a handout on how to ensure that I was eating adequate protein. In one of those "you can teach an old dog new tricks," I realized that pumpkin seeds and chia seeds are a much greater source of protein than I had realized. I was already using them but this handout encouraged me to add a spoonful to my salad or morning cereal. On another occasion, I got a lesson in changing my N95 masks more regularly. That reminded me that I was am still immuno-compromised and I need to prevent Covid infections in particular.
I saw the surgeon twice in this time and he was very pleased with how quickly the wound was healing. We had a discussion about the seton removal in six months. I will need to take another break in the maintenance chemo. I will be out of commission for about a month when that happens
Mid July I had a meeting with my oncologist. Despite a bit of runny nose, the remnants of a cold that I feared was covid (but tested negative), we made the decision to proceed. I restarted the carboplatin/pemetrexed treatment for an additional three cycles. Though the previous side effects had been minor I was not looking forward to the whipsaw of dexamethasone with its loss of inhibition and hiccups. The return of metal mouth, the loss of appetite were all deterrents.
But it all went smoothly. The nurse slid the IV in quickly and easily. Though there was a little shuffling around a ride to the cancer center, that all worked out too. Though the hiccups lasted a few days after I finished the dexamethsone, I seem to have found ways to manage them. Medication and making sure I don't eat too late at night helps.
Given that my abscess indicates lowered immunity, the oncologist added Gastrofil to the treatment. The purpose is to boost production of white blood cells by the bone marrow. The most common side effect is low back pain and achy joints. When I was filling the prescription, the pharmacist mentioned that she had taken it. Achy hips gave her the most trouble. It was a challenging thought as I was trying to work back into running. I had a training session with a nurse as this is a subcutaneous self injection. By day 2 my hips were hurting and I developed a cough and runny nose. The crowd-sourced suggestion was to try Claritin. That worked magic. I had to cut my obligations on Day 3 short but Day 4 was my birthday trip to Nanaimo.
As my birthday approached, people asked how I planned to celebrate, even though I didn’t talk about it much. I had purchased my traditional confetti angel food cake. That was the only thing that I had in mind. Then I heard a group of men were assembling backpacks for chemo patients in Nanaimo. Done under the auspices of Sea Wolves, an offshoot of the Man Up to Cancer group which takes wolves as its theme, I was curious. The group offered to pick me up from the ferry if I came across. A trip on the water, being around a group of men, and doing something for cancer patients, how could I say no? As a close friend said, "That's a very 'Angus' thing to do." And it was.
I had lunch on the ferry of poutine and a pastry cup filled with blueberries topped with whipped cream. Yumm. The group spent time assembling the backpacks. I knew a couple of them but i made some new friends. Amazing how they had gathered sponsors and put this whole thing together. One of the greatest challenges for men facing cancer is to know that they are not alone. These backpacks represent men reaching out and saying we are here for you. Whether it is practical needs or just someone to talk to, these men's groups represent hope.
My summer plans to visit Sandy in Manitoba and Evan in Alberta fell through as I realized the challenges of treatment and additional medication. It would make time frames too tight to be enjoyable. I'm looking forward to a busy fall again. Still into all that I want to fit some time with my boys.
The fall begins with the World Conference on Lung Cancer in San Diego. I'll enjoy renewing old acquaintances. I will have the opportunity to talk about my experience with "Chemotherapy for EGFR Patients." This is a hot topic right now as research has shown better outcomes if patients have chemotherapy in parallel to osimertinib.
From there on October 6, I will be running again in the Run for the Cure, and I am speaking again. Shortly after that, it is off to Halifax. This is another in-person gathering of CMA Patient Voice. The meeting coincides with a conference on Physician Health that I had reviewed abstracts for. On my way home I will make a brief stop in Toronto and be a part of the Health eMatters conference.
For the last few months I have been involved in planning for the development of the National Action Plan for Lung Cancer. When we put the date on the calendar for November, I wondered if I would be there. Somehow as the day draws closer, it becomes more real. The summit is being organized by researchers, patients, and not for profit organizations. Through a process of national survey and a refining poll we will come away from the day with a National Plan. The Action Plan will stimulate research, diagnosis and treatment of lung cancer in Canada. By identifying clear areas of need we hope to stimulate more interest and funding.
On turning 66. This was a birthday I never thought I would see. I found myself reflecting on this birthday moment more than I usually do. I found myself looking back over the past few years. Things have happened so fast in many ways. Often I'm asked how to get involved in advocacy? I don't have a good answer for that other than my own story. It started with me telling my story, chronicling the events that happened as I wandered along this strange journey called cancer.
At first, I didn't meet many other lung cancer patients. I saw two things. Lung cancer patients don't last long very often. That fact stops them from forming advocacy groups or a lot of the other supports that other types of cancer have. Second, the stigma that surrounds lung cancer makes it difficult to speak about.
When I was offered the chance to be part of the "Wrong Question" campaign, I said, "Yes." I was sick and tired of answering the question, "were you a smoker?" Though by people who knew me it was often framed as "But you weren't a smoker were you?" Over the years my answer has been refined to "If you have lungs, you can get lung cancer." That campaign is back. Fellow patients sent me pictures of an ad in the local bus system.
Still when I looked at the prognosis I was given I knew that I needed to do things in a hurry. The added spur to that hurry was watching my wife die in six weeks. I began to live in the present. I found myself doing things that I had always wanted to do - writing and painting. As I did that I took on more and more roles within the cancer community. My criteria for saying yes became simple. Would it make a difference to lung cancer awareness? Did I have something to contribute to the discussion?
I just added a meeting date to my calendar for January 2025. As I did so I wondered if I would still be here. That wondering still happens despite living with this disease for the last six years.
Thank you for all the support and encouragement that each of you provide.