bout de papier, Vol. 32, No. 2 (2022), pp. 29–31
FSD 41. CAN YOU NAME IT without referring to the Foreign Service Directive (FSD) handbook? It’s the one for health care travel where “the standards of medical care … are inadequate in comparison with those in Canada.” Like most of us, I didn’t think much about getting seriously ill on post. If anything, I was more focused on accidents, since the simple act of crossing the street in many countries makes you realise how fragile our bodies are. In Delhi, where my spouse Jim Stone and I were posted from 2015 to 2018, there were so many immediate threats — car accidents; feral, possibly rabid, dogs; potholes in the sidewalks; and motorcycles on the sidewalks …
However, in 2019, I learned about FSD 41 intimately. In 2018, Jim was cross-posted to Dakar, and in July 2019, I was diagnosed with stage 2 breast cancer. I’d noticed something odd one morning and was able to see my GP late that afternoon. The GP found a lump I hadn’t noticed and sent me for a mammogram. The radiologist was concerned and suggested going abroad for a biopsy. While the mission sent me the text of FSD 41, which is very terse, a friend who had used FSD 41 to travel for a diagnostic test a few months earlier walked me through the steps. I called the responsible medical officer at Health Canada (“don’t call the general number, they don’t give you the correct information”). After sending him barely legible scans of my x-ray and ultrasound, he recommended that the Head of Mission approve FSD 41 travel for the biopsy. I was given the choice of London or Paris. I was deep in denial that this could be anything serious and decided I’d prefer a quick weekender in London, one of my favourite cities. I was put in touch with Health Canada’s fixer there, a well-connected GP who got me an appointment with the London Breast Institute (LBI) within days.
Less than two weeks after my initial GP visit in Dakar, I arrived in London after a sleepless flight. I did have a moment of panic as I was packing my two-day suitcase: “What if it’s cancer?” Jim replied, “It will be fine.” I was too early to check in to my hotel, so I dropped my bags and walked to the clinic. I arrived at the clinic unslept, unshowered, and unaccompanied. Private clinics in London have espresso makers and cookies in the waiting rooms, which helped me stay awake. After the biopsy and a new set of scans with higher-resolution machines, I met the surgeon. The first words out of his mouth were, “You have Stage 0 breast cancer (DCIS or ductal carcinoma in situ) and you need a mastectomy.” I was stunned. I was not expecting a diagnosis and treatment options yet — I came for the biopsy, not a diagnosis. But DCIS can be diagnosed from a mammogram alone. The surgeon softened the blow somewhat by telling me it was unlikely that there would be more cancer. I was in so much shock I was incapable of hailing a cab to get me back to the hotel, where I burst into tears while I checked in to my shoebox hotel room.
checked in to my shoebox hotel room.
Two days later I returned to the LBI for the biopsy results. To my further dismay, the doctor announced I also had Stage 2 cancer, far more serious than the DCIS. Jim got on the next flight to London, arriving less than 24 hours later. The following week, the pathology results arrived which meant I could start the treatment: 12 weeks of IV chemotherapy followed by a mastectomy and a year of two IV antibody (immunotherapy) drugs every three weeks. Depending on how the cancer reacted to the initial chemo, more chemo or radiation might be necessary. The cancer was aggressive, which the doctor said meant that it would “eat up” the chemotherapy, so my prognosis was good.
As the plans for my cancer treatment came together, the doctor at Health Canada outlined my choices: treatment in London, Dakar, or Ottawa, or termination of the posting. While none of these were ideal, Dakar was far and above my first choice. It was home. I didn’t want to stay in London, although I had grown to trust my medical team, and I didn’t want to go to Ottawa. I wanted to be with my husband, my apartment, the life I’d created in Dakar. Ending the posting early was the worst possible option. The cross-posting the previous year from Delhi to Dakar had been intensely stressful. I had already started chemo. How would I manage to do the inventory and organize things for packing up with my rapidly diminishing energy? Our tenants were on a one-year lease, which we couldn’t break, so we’d have to live in temporary accommodation and move back into our home later.
Jim stayed with me in London for two weeks, and every day we would talk through these options and strategize how to continue the treatment at home. Health Canada was hesitant to let us return to Dakar but did not forbid it. I had long discussions about whether getting my treatment in Dakar was foolish or wise. I was concerned about the availability of the drugs and things going wrong. Using my contacts, I eventually found a cancerologue in Dakar, who agreed to take me on while I continued under the primary care of my London oncologist. When Jim returned to Dakar, he interviewed the cancerologue and toured the clinic, which looked acceptable. We decided to take the chance. Nevertheless, the threat of being sent home hung over us the whole time.
Meanwhile, I had my first treatment in London a week after the surgical insertion of a portacath under my collarbone that connected to my jugular vein through which the drugs would be administered. An allergic reaction to both my chemotherapy drug and one of the two antibodies postponed my return to Dakar. Reactions to the chemo drug are not rare, and the following week I received a different, much more expensive formulation that my body tolerated. My oncologist figured my reaction to the antibody drug was similar to what some of us get with a flu shot, and that l’d probably be fine the next time, which I was. However, since I was only getting the antibodies every three weeks, I had to extend my stay in London to get the second dose there. The delay meant I spent more than five weeks in London, more than half of them alone. By the time I left I was losing copious amounts of hair and had become fairly lethargic. The overnight flight back to Dakar through Casablanca was among the most difficult I’ve taken.
I left London with almost $15,000 worth of chemotherapy in my carry on — most precious cargo — because it was not available in Senegal. The two antibody drugs were approved in Senegal but had to be ordered by the pharmacy from France and Germany three weeks in advance. We soon got into a schedule of picking up the drugs the day before my treatment and ordering the next batch at the same time, paying the full $10,000 cost up front. Allianz, our insurer, only reimbursed us for the drug costs at 80% (co-pay 20%) because they were provided outside of a clinic. Jim could only request reimbursement once the clinic provided proof that the drugs were administered. After we paid $3000 out of pocket for the co-pay, the catastrophic drug coverage clause was triggered, and Allianz covered 100% of the cost.
Not only did I have to bring my own drugs to the clinic, but we had to bring supplies including the needle, saline, and tubing. The first time Jim went to three different pharmacies and still couldn’t find all the items on the list. We eventually got the hang of this too, buying six-packs of saline.
When I left London, the plan was to return after finishing the remaining eight weeks of chemotherapy for the mastectomy. However, once I finished the chemo in early October, there was a confusing exchange of emails with Health Canada and Global Affairs Canada (GAC) about whether FSD 41 would cover the trip for the mastectomy. Was it considered follow up treatment that wouldn’t be covered by FSD 41? Or part of the original treatment? It was suggested that I go back to London for some scans and then my case would be re-evaluated, although it was clear that the next step was surgery. In the end, my trip to London for the surgery was approved for FSD 41, but the confusion about whether and how that would happen caused agonizing stress that I could barely handle. By the time I finished the 12 weeks of chemo, I had counted about 25 side effects, but none were as bad as negotiating my future with GAC.
Everyone waits anxiously for the pathology report after cancer surgery. Although the pre-surgery scans indicated that the cancer had responded well to the chemo, only the pathology was able to give a clear answer on whether I would need further treatment. The possibility of more treatment — harsher chemo or radiotherapy, or both — scared me less than the question of where it would happen. I felt I had reached the end of GAC’s patience and that if I needed further treatment, I would have to return to Canada for it. I packed my bags in Dakar with the possibility in the back of my head that I might not return again. So, my relief when we finally received the pathology reports, at 4 p.m. on a Friday afternoon before Jim’s flight back to Dakar, was twofold when it indicated a complete pathological response to the chemotherapy. The best news possible! I would still have to continue the immunotherapy every three weeks until the following summer, but there was no further treatment.
I was not allowed to fly until two weeks after the surgery, due to the risk of blood clots. When I returned to Dakar, I promptly fell and broke my foot due to chemo clumsiness, while Jim was on a business trip to Mauritania. By this point I was used to managing my medical issues on my own. Jim came back in time to drive me to the appointment where a fibreglass cast was put on my foot, a cast I wore for three weeks. The only advice I received from the doctor when he cut the cast off was to walk barefoot in the sand and always wear “baskets” (running shoes). My physiotherapist-chiropractor, ironically at whose office I broke my foot, helped me rehabilitate my foot and walk again.
By February 2020, I was finally feeling stronger, recovering from the worst of the chemo side effects and walking longer distances without pain. We were planning a celebratory trip to Portugal but abandoned those plans when COVID hit Europe. On March 17, when we got our order to evacuate Senegal in less than 36 hours, I felt my life fall apart for —— the second time in less than nine months.
We left Dakar the day before my antibody treatment, which had already been paid for. Back in Ottawa, it took me a month to make the arrangements with the Ottawa Hospital to continue them. When I was finally able to speak to an oncologist, he said it was acceptable to wait up to 8 weeks between treatments, so my health did not suffer from the delay. However, my mental health did, from the frustration and worry. I’ve been told that the Ontario medical system is very good at dealing with breast cancer. It is less good at dealing with someone coming from abroad and needing to continue treatment. Especially during a pandemic, to be fair.
It took Jim several months of correspondence with the pharmacy to be refunded the cost of the unused antibody drugs. Luckily for us, there was another woman in Dakar receiving this treatment, so the pharmacy considered a refund. Lucky, also, that Jim grabbed the receipt when we frantically packed our suitcases. However, they would not reverse the charge on the credit card, insisting on refunding it in cash. The spouse of one of the few remaining staff at the embassy helped us out. It was a great relief when the last of the money transfers showed up in Jim’s bank account.
I had my last antibody treatment in August 2020 and celebrated by ceremonially burning the black ribbed tank top I bought at a charity shop in London and worn to every treatment but the first. I continue to be in Ottawa on medical leave dealing with long-term side effects of the chemotherapy. More than anything, I feel grateful. Grateful that the cancer was caught early, that it was eminently treatable, that it responded well to the treatment, that I didn’t need further chemo or radiation, that I was able to stay in Dakar when it mattered most. I’m grateful to have received excellent cancer care in three countries on three continents.
Originally published in bout de papier, Vol. 32, No. 2 (2022), pp. 29–31. Read the rest of this issue →
