when you get melanoma, you don’t get one doctor, you get a group of doctors. in recent months, i’ve worked to expand that group to be a multi-disciplinary team of practitioners, both in conventional hospitals and integrative care facilities. i’m in the even more unusual situation of having care in two countries. initially, it is very overwhelming. all of a sudden you have a new and unwanted job, and you need to manage a large team of practitioners, and their varying styles. the information is also confusing and sometimes conflicting, so curating all that information and facilitating communication becomes a central part of your day. PLUS, there are insurance issues… but that is for another post. it is a scary and vulnerable feeling to be living fully in the hands of others.
drafting your team is pretty intense, and it is all happening when you are deep in grief. it is a world that i knew nothing about until i was thrust into it. i didn’t even know there were different types of oncologists, and i definitely didn’t know that patients had any agency or choice in the situation.
a lot of patients will tell you to “shop around” and find the best oncologist for your disease. in some ways, i did this. last may, when we discovered the cancer had moved to my lymph nodes, my oncologist in bangkok did not exude confidence for me. he was approximately 98 years old. he looked like doc from ‘back to the future’ and was surrounded by stacks of papers up to his eyebrows. when he was rifling through files and books to look up the most recent data on melanoma, i knew we were in trouble. he had never even administered immunotherapy! this was not the right doctor for me. we researched the melanoma specialists in canada, and made the decision that it made the most sense for me to be based in ottawa. i was reassured that there were a few specialists at the ottawa hospital, and we were able to get in quickly for appointments.
the team outlined below do not include my personal safety net of people that provide me with emotional support, practical support and informational support. in some ways, these people are even more integral to my physical and emotional wellbeing than the doctors. this part has been tough since being back in bangkok. i don’t hear from people as much and when i do i find myself too tired at the end of the day to write texts and emails. with the time difference, phone calls are minimal. luckily, i’ve got blogs, books and other resources that i can turn to if i’m getting desperate. i’ve even recently joined a couple of online groups for cancer support, and i’ve got some contacts at the melanoma institute of australia. having those connections and the most current information does significantly reduce anxiety.
a few of the members of my team:
surgical oncologist: this is a surgeon that specializes in cancer. i loved my surgical oncologist. she spent lots of time with me, and saw me quickly. she even answered my emails! she performed my axilla lymph node dissection back in june. i completely trusted her and in some ways i wish i could have continued working with her (but for now, i don’t need her anymore).
medical oncologist: this is the person you see the most regularly, at least while you are on treatment. he manages my care throughout, officially offers the diagnosis, helps make treatment decisions and manages my side effects. i have one in canada, and now one in bangkok. my medical oncologist (med onc, for short) in ottawa is professional, intelligent and very busy. i have a lot of respect for him and trust his opinion immensely. i worry he doesn’t understand my unusual life, and how difficult it is for me to be in ottawa. my medical oncologist in bangkok is funny. she doesn’t take herself too seriously and she encourages me to lighten up. she also isn’t an expert in melanoma, so i take that with a slight grain of salt….! luckily, they are in touch, so all she is doing is carrying out the plan as it was created in ottawa.
physiotherapist: after my surgery in the summer, i saw a physiotherapist to a) work on my range of motion with my left arm and b) prevent lymphedema. she worked closely with my surgical oncologist, and helped empower me to believe i could be able to exercise again. after a lymph node excision, it is very difficult to go back to very heavy weight lifting as i was doing before (because of the risk of lymphedema), but she helped me to take the first steps. this was not an automatic referral after the surgery, and i absolutely think it should be.
massage therapist: after my surgery, i continued to have pudginess in and around my armpit. i did not know if it was the beginning of lymphedema, and i wanted to speak to an expert. as well, i naturally hold tension and anxiety in my back and i was desperate for a massage. my physiotherapist referred me to a massage therapist that specialized in lymphedema… and i had sweet, sweet relief. since returning to thailand, the land of massage, i have avoided having my head/back/neck/shoulders done. i am back to desperately craving a massage but don’t feel comfortable having one until i can find someone i can communicate clearly with. it is not worth the risk.
counselor: i’ve always been an advocate for addressing mental health, even when i wasn’t in crisis. this was an early priority of mine. finding the right counselor is kind of like dating – it is about fit. one counselor told me i was presenting too well (ugh, hello – it is called over functioning – and it is a coping mechanism you stupid $%&ing idiot). the next counselor i saw for quite some time was a lovely person, but she spent most of the time telling me that everything i was experiencing was ‘typical’ or ‘normal’ under the circumstances. while i agree with her, i need to be pushed beyond that. it’s like, so what? most recently i found a counselor based at the melanoma institute in australia. we met on skype, which was different. she is VERY expensive but i believe she will be worth every penny. she was very direct, and she was willing to go that next step beyond ‘normalizing’. she reminded me that i can’t problem solve cancer; but that i can minimize the distress associated with the uncertainty, and she will be my co-pilot.
naturopath: i saw someone based at the ottawa integrated cancer centre. we talked about making my body as inhospitable as possible to cancer. there is lots to say here, so at at some point in the future i will do a whole post on nutrition and conscious adjustments i’ve made to my diet. i’ve also recently been struggling with some digestion issues, which could be thailand-related but is likely immunotherapy-related.
acupunturist/traditional chinese medicine (TCM) practitioner: out of all the complimentary therapies that i have tried, acupuncture has been the most surprising. i find it very grounding and soothing. i have no idea if it is actually working, but the consults with the practitioner have helped me to see cancer in a different light. he explains that acupuncture does not cure cancer, but ensures that the soil (our bodies) is healthy and nourished. i wish i could teleport him from ottawa to bangkok. i have reached out to some local contacts to see if i could find a TCM practitioner based here in bangkok, but so far, i haven’t found someone who specializes in cancer and who speaks english.
cancer coach: this is an amazing free resource at the ottawa regional cancer foundation. having been a learning coach in an educational environment, i am a deep believer that having a thinking partner can help support planning, reflecting and problem solving. the great thing is that they are free of charge, and they are not only available for the person who has cancer, but to anyone in their family. if you know someone in the ottawa area who would benefit – please tell them about this resource.
yoga: ALL my yoga teachers have been a life savers for me. not only does going to yoga give me physical activity, but it is also is good for my mind. i found a safe haven in ottawa at prana shanti; and i’ve found a lovely studio here in bangkok called yogatique.
when people ask me what i was doing for those six months in canada when i wasn’t working, i tell them i was mostly going to appointments. i’m surprised i had any time to fit anything else in! i also appreciated seeing all these doctors/teachers/practitioners, because each provided emotional support in different ways. on the downside, it does get expensive, and not everything is covered. plus, i didn’t want to become too dependent so that i was afraid to be on my own.
since being back in bangkok, i had to get over my initial fears of losing some members of this team that i had worked hard to build. starting again from scratch is a lot of energy and work. in my ideal world, i would have each of these resources in both places; but that just isn’t practical. another hard part of being back in bangkok is that there are not as many options for complimentary treatments. even though i’m in the land of ‘eastern medicine’ it does not seem to be readily available for expats. i have had to be creative and even use some video calls to deal with distance.
thanks to all of you reading who are also on my team. i know i’ve got so many people rooting for me and cheering for me all around the world. i’m grateful for the support that is shown in so many different ways. i could not get through my days, my appointments, or my fears without you all.
*photo taken in dhobi gat, an open air laundromat in mumbai, india. i visited in february 2014. i did my own laundry when i was back in canada. now that i’m back in bangkok another integral member of my team is helping me, my mae bahn. forever grateful that someone else is doing my ironing!
