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Wrong Way to Hope
On Tuesday, April 19, 2011, two days before my radioactive isolation, I attended a screening of a film called "Wrong Way to Hope". (Visit their website at: http://www.wrongwaytohope.com). I remember that day as intense. First of all, I was exhausted from the little sleep I had the night before and from being so hypo. I had also had an appointment with my new specialist, a blood test, and a counselling appointment. Plus I was trying to plan a trip to Newfoundland for the healing retreat without any idea of how I was going to pay the new higher plane fare without my AirMiles. (The healing retreat is being organized by Young Adult Cancer Canada: http://www.youngadultcancer.ca). I could have easily gone to bed and curled up and hibernated but, me thought, 'No, I must go.' And go, I did. Well, more like dragged my "hypo" self on to the bus...
The screening was held at Wellspring (Westkirk House at Sunnybrook), the cancer support centre. I wanted to see this screening especially since it was about the adventure trip that young adult cancer survivors took up a river in Oregon, USA. The trip was organized by Mike (cancer survivor) and Bonnie Lang (his wife and supporter). I especially wanted to be at this screening since I wanted to meet other young adult cancer survivors. Finding a young adult cancer patient or survivor is kind of like finding a needle in a haystack. We are so small in number that we are an underserved population in terms of services. In almost all of the workshops, yoga classes, and groups I attend, I am the youngest participant by several years. (I am 33 years old.) So that means many of the young adult cancer patients and survivors are not being served adding to feelings of isolation. I have felt this isolation too. Although I have many loved ones around me, I genuinely seek other people who have faced or are facing cancer. They completely get it!
What's even more sad is that if you have a lengthy cancer treatment (e.g., multiple surgeries, multiple rounds of chemotherapy and radiation that can last months and years), I can only imagine the intensity and length of this isolation. This issue and others were expressed by the survivors in the film. Changes to relationships, identity, and transitions all had a part to play in their cancer journey.
I commend Mike and Bonnie Lang for tackling these issues in their film and for organizing a national tour of the film along with Pat Taylor, producer/director of Chasing Rainbows productions. (You can visit her website at: http://www.chasingrainbowsproduction.com). Organizing a national film tour is a lot of work but very rewarding. (I should know. I organized a nationally touring film festival called ICED IN BLACK: Canadian Black Experiences on Film in 2002 and 2003.)
I am so happy I attended. First, I learned more about the community and support for young adults with cancer. Second, I connected with an anonymous donour to help me pay for my flight to attend the healing retreat in Newfoundland (see my post "Love, Medicine, and Miracles"). I'm so excited to go. Newfoundland will be my 9th province visited. (There are 10 provinces in Canada so Prince Edward Island will be next.)
Pat Taylor (left, Chasing Rainbows), me, and Mike Lang (right, adventure therapy facilitator/cancer survivor/Wrong Way to Hope)
Peter Laneas (left, National Spokesperson, The Canadian Testicular Cancer Association/cancer survivor), Pat Taylor, me, and Mike Lang
The Calm and the Storm
Today I woke up with a little more energy than the day before. I couldn't believe that today finally came-- tonight I would be flying out to Newfoundland to attend a healing retreat. Given that my hair was the hot mess it was, I visited my hairstylist/loctician Glenroy Simmons, aka Blueloc . I hadn't seen Glenroy in about a year. Ever since Strictly Roots closed down and went virtual that is. (You can find Strictly Roots on facebook. I love Glenroy-- he's very skilled at what he does, always knows how to style up my hair, and he's a good friend too. (We played 'Mas in Caribana together in 2009.) So he worked his magic and in no time, PRESTO! My dowdy locs were singing a new tune.
It was such a nice day that I decided to have lunch at Mela Italian Vegetarian Cafe where not only did I eat a scrumptious breaded eggplant panini with herbed tomato sauce and a chocolate macaroon, but I got to practice my Italian. Plus, this place gets extra points. (The chef called me "signorina" which means "young miss".) Click here to see their website.
I decided that I wanted to find some nice silk scarves to brighten my outfit and mood. Glen suggested a few shops in the PATH (Toronto's underground mall). I found a beautiful silk scarf for $ 5.99 at Panache! (I hoped that these were not sweatshop scarves so I decided to make it even I would walk all the way to TEN THOUSAND VILLAGES in the Annex where I knew I could purchase another scarf that would be fairtrade.) I knew that this would be a long walk but it was such a lovely day, 19 degrees Celsius and my first official "Day Out" of Radiation. (Did I say that yesterday?) So I bought a scarf and earrings and a small gift for my mom's birthday (which will double as a Mother's Day gift). You can visit their website at: http://www.tenthousandvillages.ca/ And this is when my body first caught up to me. I felt tired all of a sudden. Really tired. So the helpful saleswoman/volunteer (that's how this store is run), let me sit down and brought me water. (They even offered tea. That's so sweet.) So I sat down, rested until I felt strong enough to go home.
So you get the idea.
My day started pretty calmly... then I got home.
Oh my gosh! I had so much to do in such a short amount of time. I was to fly out to Newfoundland tonight to attend my healing retreat. I quickly assembled my to-do list and got "to-doing", while making adjustments along the way. Somethings I had to take out (no I couldn't make it to the bank, I'd have to do internet and phone banking and no I'm WAY too LATE AND EXHAUSTED to take the public transit to the airport) and others were MUSTS (I must eat).
I am happy to say that I got the most essential things done. My fiance got home and got into action to help me get some things ready. (I hadn't read the THINGS TO BRING LIST until the last minute so his quick fix of my winter boots was helpful.) And before you know it, I was on a plane to Newfoundland.
Adam (my fiance) and I
Gate 153 to Deer Lake, Nfld
Up, up, and away!!!
Landed!!!
Where Am I and What Am I Doing Here?
Where am I?
Currently, I am in Gros Morne National Park (specifically Rocky Harbour, Newfoundland) for a healing retreat with Young Adult Cancer Canada.
LESSON: Newfoundland is a province in Canada. It was the last province to join Confederation in 1949 and is currently known as Newfoundland and Labrador.
Last night I arrived by plane to Deer Lake, Newfoundland. The time zone here is 1 1/2 hours ahead of Toronto's time.
Busted
Going through the airport after my radiation treatment, I was warned that I was bound to set off the alarm. (I expected some loud siren to go off with flashing lights and having a swat team lead me into some search room.) It totally wasn't like that. After walking through the scanner, a woman in uniform came up to me and told me I needed a secondary search. She said I could go through the machine or have a pat down. I'll take the machine (hell, yeah! As if I want some strange woman to give me a pat down.). So I walked into some futuristic looking clear machine and stood in this rotating scanning device similar to revolving doors. Then I was instructed to come out. The machine began to compute some data. "I have a medical note," I told the other woman in uniform. She did not respond. Then a human animated silhouette popped up on the screen. The figure was beige in colour but there was a red dot (in the ovarian/intestinal region). "Do you have a belt on?" she asked. "No," I said. Then she told me to go through. (That was so embarassing because I had to go to the bathroom and wondered if my "radioactive" waste was showing up on the screen.)
So as I was waiting for the plane to load, I told the staff member, "I had radioactive treatment. I'm safe to be with the public but I request not to sit beside any children or pregnant women." So after a long wait and being asked to step out of the line, I was seated IN THE EXECUTIVE SECTION. I went to my seat which was empty. No pregnant women, no children. Then I looked behind my seat and I saw woman with a baby on her lap. I told the stewardess that I could not sit there because I had radiation treatment. So she placed me in another seat beside a woman. I sat down beside this woman, looked at her stomach, and thought "no baby bump."
All of a sudden, a young pilot came up to me. "Did you have radiation?" he asked.
"Yes," I replied. (I was thinking that he was going to escort me off the plane.)
"When?" he asked.
"On Thursday," I said.
"Thursday?"
I nodded. "I have a note," I offered.
"Let me see," he replied. I gave him the note. "Did you receive 100?" He asked.
"Yes," I said.
He looked up and began to do calculations in his head. "How much do you weigh, if you don't mind me asking?" I told him. He looked up as if he was doing calculations in his head. "So you should be at about 20 now."
"Wow, you know more than my doctor," I said with a laugh.
"Well, i've seen it all," he said smuggly. I know he liked this challenge.
"I'm pregnant," the woman beside me said.
Oh.
And with that, I quickly got up and apologized for not asking her. The pilot agreed that I would have to move. So did I. I don't want to harm a life.
So there I was, standing inside the plane, seatless.
About five long uncomfortable minutes passed before, the stewardess had asked another passenger to move so I could sit.
What the *&#$ am I doing here?
Executive class is really different. First, I was offered something to drink. Then, I tried to get "THE KING'S SPEECH" to work on my personalized screen. The touchscreen would not drag properly, finally with a lot of effort, it began to work. I was watching it while we waited for the connecting flights.
Finally, the plane began to move. The flight safety video came on and interrupted the movie. That was the end of that. As we sped down the runway and I started to lift off, tears rolled down my chin. (Oh God, not this again.) I was crying and couldn't stop. The emotional floodgates opened and I had no Kleenex. So I used my scarf. I thought about all of the actions that brought me to this moment, the miracles, and the love. There were so many reasons I shouldn't be on this plane but there was no turning back now. I had sponsors pay for me. I finally had my radiation behind me and I had a doctor who said I was safe to fly. I had folks praying for me. I was overwhelmed with gladness. I also remembered my late Aunt Hilma "Jenny" Walker, one of the first flight attendants for Air Jamaica. She would have totally done this adventure. I remember the postcard of the junks (Chinese boats) in Hong Kong when she visited. She was exuberant and had this beautiful zest for life. As we were airborne, they plane stabilized and so did my emotions. The attendant gave us hot steamed face towels. I wiped my face.
The guy sitting beside me was pleasantly chatty. He was middle aged and a returned Newfoundland native who had lived all over Canada and in other countries. I put down my book. We talked about cancer, visiting Jamaica, similarities between Jamaica and Newfoundland (cod fish and "screech" which is Jamaican rum) what to see in Newfoundland, factory farming,... It was a completely easygoing conversation. But just as easily as that conversation began, it ended just as abruptly as soon as the plane landed. He talked to his fellow Newfoundland passengers and he was gone. I said, "Bye!" but he didn't hear.
At the airport, I got my bag and got up my courage to ask another lone passenger if she was by any chance part of the Young Adult Cancer group. "Are you Nadia?" she asked. Yes and with that we decided to share a cab to the Driftwood Inn. (Only thing, it took us a while to get a cab. Unlike Toronto's busy Pearson International Airport, there were not loads of taxis waiting. There were probably one or two cabs. Also, within the half an hour while we waited, the airport was deserted. I guess there were only two cabbies servicing Deer Lake because that night. The driver returned for us after two trips with other passengers to and from the airport.)
"Are yous part of that cancer group?" he asked. Yes, we replied. "Yous twos never met before?" No, we replied. Were there others like us at the hotel?, I asked. "Well, I dropped off this coloured girl?" earlier on. Coloured girl? Do they still use that term out here?
"Well, she wasn't on our plane," I replied. (That was for sure. I did the count on the plane. I was the only Black person, aside from the mixed boy.)
When I finally arrived in my room, panic set in. "What was I doing here?" I started to get real anxious. What if all the people I meet are hicks? Why did I leave home? I miss my fiance and cats. I just got out of isolation, I didn't even get to spend much time with my fiance. I felt cold. It was four in the morning and I couldn't find the book I was reading. I realized I left my book on a seat on the plane. It was a library book. I began to freak out and search for it. I don't know any of these people on the trip. I will be trapped here for a week. I was feeling hungry (my appetite was just coming back) but the vending machine food did not appeal to me. Where was I? Outside it was too dark to see anything. And on top of all this, I didn't know what time it was. (My cell phone did not reset and the alarm clock in my room was blinking the wrong time.)
Eventually I calmed down enough to grab my big orange journal and I began to write. I wrote about my worries, each and every one and addressed them calmly. (No, maybe I shouldn't have been reading that book about work. Eat that bag of almonds that the passenger gave you. Put on something warm.)
And I fell asleep.
This morning, I hurriedly blogged and despite the brown water that ran from the taps (it eventually ran clear and the Driftwood Inn staff checked it out), a brunch of veggie stir fry at Jungle Jim's with the girl I met at the airport, and then we met the another girl and took a cab to the retreat.
The Driftwood Inn
Brown Newfoundland tap water
Bye bye, bedroom!
Outside my window at the Driftwood Inn
Jungle Jim's
When we arrived at the Deer Lake Hotel, there was a dining room full of participants and organizers full of smiles and positive energy. I knew what I was doing here. I was given a welcome package, we packed the big yellow school bus, and started the speedy two-hour trip to the Ocean View Hotel at Gros Morne National park. Only, our bus driver did it in 1 hour on slick, rainy, hilly roads.
The yellow rocket
Home for the next four days
Newfoundland. I'm ready for you!
My (and my roommate's) room with a beautiful view!
Rocky Harbour Teaser
Posing across the street from the Ocean View Motel in Rocky Harbour, Nfld.
Campfire on the second night.
Gimme' s'more.
Sitting at a lookout point near Lobster Cove Head. I was so scared to go beyond the fence.
The famous peaks of Gros Morne National Park.
Lobster Cove Head lighthouse this way. We've reached our destination.
Lighthouse at Lobster Cove Head, Rocky Harbour, Nfld. (about 4km from the hotel) It's still active but closed since we were there in the off-season.
Standing on the base of stones at the lighthouse.
Another angle.
The sky is changing colour with one sunset.
The sky is changing more colours.
Again.
And again.
What I've Learned So Far
I think Oprah always writes an editor's note with this title on the last page of O, her magazine. Well, I'm going to take a page out of Oprah's book. (No pun intended.) Today is the last day, rather, morning of the retreat. Today, we leave Rocky Harbour (Gros Morne Park) and drive back to Deer Lake. From there, I will take a road trip (7 hours) to St. John's (the provincial capital of Newfoundland) with another participant and two of the organizers and fly out tomorrow night. (The reason we are not flying out tonight from Deer Lake is that the plane tickets were $ 2000. This was the cheaper option. Imagine! De' plane ticket so dear an' we live inna' Canada. It no like we gwine fly a foreign.)
So as I sit here facing the ocean, after my prayer and meditation, I wished to share what I've learned so far on this trip.
1. Cancer is not my fault. (I think part of me was blaming myself for my cancer diagnosis.) Cancer is not my fault.
2. Nature is healing. While here, I have had an amazing time being with nature, sitting outside, going on walks, etc. etc. Sometimes, I forget my symptoms. Don't get me wrong. I still am feeling the effects of my illness through exhaustion, waking up very very early (insomnia), heart palpitations, moodiness, anxiousness, muscle cramps, and loss of appetite at times but the difference is, I don't dwell on it. All I need to do is look at the majestic, snow-capped mountains or the wide-open ocean vista and realize that I'm surrounded by this beauty and I want to soak it all up. When I'm at home, I can return to this place (in my head or in photos) whenever I am sick.
3. Sensitivity and showing emotions are strengths. Just like when I teach my students, sharing your feelings can help you feel better. Now I'm learning that for myself.
4. I am not alone. There are other young adults walking on this cancer journey. I'm with people who get it. (And we are many. In Canada, 7,000 young adults are diagnosed with cancer ever year.)
5. Let go. Everyone here did not "plan" on having cancer. We all found out in different ways. In our young adult years, the time when you are trying to establish your career, identity, family, income, etc. is not the time when we plan to get sick. So sometimes athough we make the best plans, we have to yield and let go because things usually roll out the way they should. (Often not the way you planned them.)
More amazing photos to post soon. And no, they will not be all of me. (I had to ask permission of the people I met to post their photos. It's the courteous thing to do.)
Rocky Harbour Retreat Highlights
I was a little bit skeptical about this at the beginning. The confidence that I had coming to the retreat melted away and all the fears came that first night. I began to wonder if I should even be there. Besides I have thyroid cancer (aka the best cancer). I didn't know if mine was serious enough to come to a cancer retreat. (LIES!) Other participants at the retreat were told that they had the best cancer too. And there were still others who thought they did not have it as bad as the next person. But what I learned was that CANCER is CANCER. We all have been impacted by our diagnosis in some way. There was a lot of sharing, small groups, and fun times. We ate really well and this was the first vegan outing I ever had. (By the way, I developed some vegan survival skills.) I have not cried so much since my diagnosis as I did that weekend nor have I laughed so much. I CANCERvivors really know how to have fun. We had a talent show. (A sense of humour is absolutely necessary when you have cancer.) And when I needed to take a nap or a break, it was TOTALLY okay. Everyone understood why. I came to this retreat, a little concerned, worried, and not sure how I was going to be (feel). I go home feeling more clearheaded, prepared, and with new friends! (I posted some photos of the friends I made. Others were not posted if I did not get to ask for their permission.)
Ray and I.
Hiking to the lookout.
Doing a little karaoke. Since the operation, my singing voice is still a bit mashed. (I sing in a lower register now and there are some notes I can't reach.) So I was a little self-conscious to say the least. However the participants were very encouraging and some also had voice changes as a result of their treatments. It was such a forgiving audience. I sang "Groove is in the Heart" by Dee-Lite and "Take My Breath Away" by Berlin.
Getting ready for the Polar Bear Dip.
The brave 'uns- Josh and Mikey.
Amy and I met at the airport that first night in Deer Lake and cabbed it to the motel. I know so many Amys.
Steph, my roommate, and I.
Steph, me, and Joey.
Those are really my feet. Proof that I was really there at Gros Morne Park.
More proof.
Robin, Joey, and I shared this wonderful view.
Below that edge was huge drop off cliff. I made sure that I stayed safely back.
Enjoying the fresh cool air.
I was really there.
One of Rocky Harbour's cemeteries.
Heading back...
In this beautiful place, there were so many for sale signs.
Last Gros Morne sunset.
Me, Julie, and Josh-- the three musketeers.
Tamarah, my Haitian sister, and I. We were so happy that we were not the only Black girls in Newfoundland that weekend. (LOL)
I took a leap of faith to come here.
Bye Gros Morne.
The golden coach awaits.
The trip back to Deer Lake.
More beautiful sights.
My one and only moose sighting during the whole trip. Poor thing got scared and ran away.
Landed in St. John's
I landed in St. John's last night after a 10 hour road trip with Christina (one of the YACC retreat participants) and Karine and Angie (retreat organizers). We made a few stops for lunch, boutique browsing, taking pictures, and McDonald's sundaes. (My darned sweet tooth! Christina gave me a Lactase since my body has forgotten how to digest dairy.) I slept much of the way. I love long car rides. Just like a baby, I'm soothed by the sound of the car engine. We past by miles and miles of wide open spaces and hilly roads, the skies framed by trees on the mountain sides. At one point, I woke up and I thought I was in Jurassic Park. There were no people and no sign of human existence in these spaces. Newfoundland has these spots where you feel like it's just you and nature. The people here call Newfoundland "The Rock". Jamaicans call Jamaica "Jam Rock". I am observing that there are other similarities between Jamaica and Newfoundland including the Newfie codfish which is such a staple in Jamaica (and much of the Caribbean) as well as the "screech" (Jamaican rum) which is so popular here but it's also the spirit of the people. Both people are very warm here and hospitable but they also tell you like it is. No beating around the bush. They come across as very genuine. The older folks always greet you and the young adults (which there seems to be so many around the downtown core) are always ready to help. The other thing about Newfoundland is the accent. It is so distinct and in some parts, you have to listen really closely. It reminds me of Jamaican patois sometimes. There is a Newfie folk song called, "I's the b'y" and I tried to sing a Jamaican version of the same tune with "I's de' bwoy". The Newfoundland accent is sometimes Irish sounding, sometimes French sounding, and reminds me of a Bajan (Barbadian) accent. Also, like Jamaica in some parts, the houses in St. John's are multi-coloured. Yesterday, we drove through an old fishing village in St. John's called Quidi Vidi (pronounced Kiddie Viddie). The roads were so narrow, hilly, steep, and winding kind of like Muirhouse-Top Buxton (St. Ann's, Jamaica) where my mother and her family are from. Last night, Christina and I went to Piatto where I had a cheeseless pizza and she had a salad. This morning, we are off to Sprout, a vegetarian restaurant, for breakfast. Can't wait! I will post more photos really soon!
Jaunt in St. John's
Since I booked my plane ticket so close to the date of departure, the prices to fly had skyrocketed. The ticket that would have once cost me $ 650 was now about $ 1900 if I were to fly out of Deer Lake. So the best price for us last minute folk was to drive from Deer Lake to St. John's and fly back to Toronto from there. In order to do that, I had to spend a night in St. John's. Luckily, I had company. Christina, another retreat participant, also was flying back to Toronto on the same flight. Karine and Angie, organisers of the Young Adult Cancer Canada (YACC) retreat, drove us to St. John's. (YACC is based in St. John's.)
No beating around the bush here. (The church was called Miracle Temple.) This was spotted on our road trip from Deer Lake to St. John's. The trip was 637 km long and took us about 10 hours in total including all of the stops. We drove on Highway 1 TransCanada Highway.
Quidi Vidi (pronounced Kiddie Viddie) Lake
Christina and I in front of the lake.
Me in front of Quidi Vidi Lake.
The actual site of Quidi Vidi (old fishing village) reminded me of Jamaica. Although it feels "closed in" and secluded, it is part of the provincial capital of St. John's.
Quidi Vidi.
We finally arrive at the HI (Hostelling International)- St. John's City Hostel. I've stayed at hostels all across Canada when I was running my festival years ago. HI-Hostels are clean, simple, and much cheaper than a hotel.
The steep hills of the streets in St. John's, Newfoundland.
Yes, those are stairs on the sidewalk to go up the hill.
The Sprout. Only the premiere one and only vegetarian/vegan restaurant in St. John's. As soon as I knew I was coming to Newfoundland, I looked up the veggie restaurants on the internet.
Christina and I are so happy to finally get a seat after waiting for 30 minutes. But it was worth it since we got to sit right at the front in the sunshine.
Sipping my precious green tea.
My beautiful meal of vegan Shepherd pie and green salad.
Christina had mango juice with mineral water and miso noodle soup with rice crackers.
Mmmmm... once I talked to the St. John's guys who sat beside us, one was so generous enough to let me sample the dessert from his plate. I quickly changed my original choice (Chocolate cashew cake) to a spicy brownie which I'm eating here.
Beloved spicy brownie. I kept asking the staff about the secret ingredient. There was crushed pepper on the brownie but there was this irresistible toffee taste to the brownie itself and the chocolate was not too bitter or overwhelming.
Proof that Jamaicans can be found everywhere!
Piatto was where I had my cheeseless pizza the night before.
Beautiful art that pays tribute to the early settlers and the fishing industry.
The first of many stops at St. John's souvenir shops. The Tickle Trunk is the name of Mr. Dress Up's costume trunk. (If you grew up on Canadian television, you'll get the reference to the CBC show "Mr. Dress Up".) Sorry to say, I didn't see an actual tickle trunk there.
Down Home souvenir shop.
There were these bricks that had names of different people embedded in the sidewalk. A walk of fame? No, more like a memorial walk.
Newfoundland Supreme Court.
St. John's harbour.
Boat in the harbour.
You can see rocky hills in the St. John's harbour.
The famous rainbow-coloured houses of St. John's.
More rainbow-coloured houses.
A unique sculpture at St. John's harbour.
The story behind the salted Newfoundland codfish or "saltfish" and how it got to be a staple in the Caribbean.
Easternmost point of Canada #1. This is as close to the edge as I would go.
Easternmost point of Canada #2. That is Christina who went to the edge. Christina is pretty brave to go to the edge. She has two artificial knees and hips and is a six-year cancer survivor. Don't let her pretty smile fool you. She's one tough cookie.
Easternmost point of Canada #3.
Easternmost point of Canada #4.
Easternmost point of Canada #5.
Easternmost point of Canada #6.
The moss that grows on the Easternmost point of Canada.
Standing at the Easternmost point of Canada. I love the natural ruggedness of this country.
Standing at Signal Hill. It sits at the height of St. John's and you can look down and see the metropolis spread. Cyclists actively ride up here and there is such sense of community up here. (There are lots of tourists.)
Signal Hill is the place where on 12 December 1901, the first transatlantic wireless transmission was received here by Guglielmo Marconi in an abandoned fever and Diphtheria hospital, which has since been destroyed by fire. The transmission, in Morse code, originated from his Poldhu Wireless Station, Cornwall, UK. (Thanks wikipedia.)
Back to Life, Back to Reality
This song title could not be more fitting. (Soul II Soul sang it right in 1989.) I arrived late last night in Toronto. Christina and her mom dropped me home. (So sweet.) We had a lovely day yesterday in St. John's. (Again, I promise to post the photos today.) This morning, I did my meditation but I am feeling really tired but the reality is there was still stuff to figure out. I went to an appeal hearing this morning for my sick benefits, then I went to the government office to follow-up on paper work for sick benefits, and now I'm home making phone calls, e-mails, eating lunch. Sometimes my healing recovery feels like a job as I make it to all my appointments, cooperate with the forms and paperwork, as well as phone calls, supporting documents, etc. etc. The nice thing is although I'm exhausted, I feel like I can handle things one... at... a... time. My lengthy to-do list is slowly getting complete. Also, I'm making sure that I give myself breathing room (for naps and to just catch my breath and sit). Even if I had to cancel the art therapy session today, it's okay. I will be going to the Writing Healing group though. The blue-grey Labradorite ring that I purchased in St. John's yesterday is a physical reminder that I can take the peacefulness of Newfoundland with me.
A New Reality
I just got back from my Writing for the Health of It class at the Cancer Support Centre. I don't remember much of the class since I slept through most of it. I was sooooooo tired. At the end of the class, I left and tried to find a different room to nap in. Laying there, I felt soooo embarassed. I have never fallen asleep through such a small, personal class where everyone is sharing their work (and life experiences). I returned to the first room, I apologized to the instructor. She and a participant said that it was okay and commended me for giving my body what it needed. I guess the feeling of embarassment (and lack of control over my tiredness) was too much because then I began to cry. (I'm becoming such a cry baby these days. Darned tears and hormones.) Thankfully, the instructor and participant were very understanding. I dried my tears and came home to have another nap.
The Healing Journey
The Healing Journey: An active response to the crisis of cancer is a series of courses and workshops founded by Alastair Cunningham, O.C., PhD, CPsych. Dr. Cunningham was a researcher who had at first specialized in cancer but after his own diagnosis with cancer, then switched his focus to the psychosocial impact of this disease. I am currently taking the Healing Journey, Part 1 through a cancer support centre after it was recommended to me by a survivor. He explained that the course could help me figure out with some of the "now what?" that I was experiencing. I found the following diagrams in my Healing Journey Workbook to be helpful in understanding the impact of cancer.
This diagram helps to illustrate how one's life must change to hinder the growth of cancer. These changes can take the forms of such things as lifestyle, relationships, nutrition, self-care, and exercise. In the Part 1 of the course, we focus on meditation, relaxation, mental imagery, and stress management. All of these factors work towards hindering the growth of cancer.
This diagram is excellent as it shows how cancer impacts different aspects of one's life. It might be a little hard to see but the concentric circles, radiate from the centre as levels. These levels are: Body, Conscious mind, Deeper mind, Social, and Spiritual. Beyond the physical aspects one may experience with cancer (e.g., detection, diagnosis, surgery, chemotherapy, radiation, physical healing), there is a huge and much larger other part. The cancer sends ripple effects to everything else so one may question, reevaluate, contemplate, and reflect on these aspects of their lives much differently after the diagnosis and treatment.
I find this stuff fascinating. Besides the fact that I am actually going through it now, I love learning about it too. Another way of putting my Honour's Bachelor of Arts degree in Psychology to use, I guess. (Sometimes, I'm not too sure how to use this degree.)
Wrapped In
I attended a workshop on how to tie head wraps held at Princess Margaret Hospital, a leading cancer care facility in Toronto. This workshop was delivered by Naza of For the People Canada. I had seen Naza with her t-shirt and headwrap displays at countless festivals in Toronto over the years, namely Afrofest. I always wanted to learn more ways to wrap my hair so when I was at Gilda's Club, another cancer support facility, and saw a pamphlet advertising the head wrap workshop, I knew I had to participate. When most people think of cancer, they associate it with hairloss. However this is not always the case. Patients who receive chemotherapy treatments often lose their hair. Some of these women cover it using wigs, hats, or other head garments. Cancer patients, like me, who receive radiation, may have hair thinning and very little hairloss. Regardless, hair wraps offer a beautiful headcovering alternative to express oneself culturally.
When I was there, I met Naza, an enthusiastic petite young East African-Canadian woman. There were a few other women who attended, almost all of whom were Caribbean-Canadians like myself. Besides the most obvious thing we shared in common (our skin colour), we also wore our hair (or until very recently) in dredlocks. At the workshop, I learned more about support activities for cancer patients and head wrap tying techniques. This workshop was free to cancer patients and I also got this free conscious head wrap too. (Free is the operative word here.) We also talked about the need for cancer advocacy and awareness in the African-Caribbean Canadian community since cancer is still a very taboo topic. We recognize that there are people in the Black community who have cancer but it remains hidden and nobody talks about it. We recognize that needs to change especially since a cancer diagnosis can be so isolating (which does not help the healing process) and early detection is the best prevention.
STYLE ONE
STYLE TWO
Thyroid Cancer Patient Forum June 14
span style="font-weight:bold;">Thyroid Cancer: Navigating Support and Education Resources for Patients
Time Tuesday, June 14 · 11:00am - 12:30pm
Location
WOMEN’S COLLEGE HOSPITAL, Toronto, ON
76 Grenville Street, Labyrinth Room (main floor)
Toronto ON M5S 1B2
Facilitator: Dr. Catherine M. Kelly
Dr. Catherine M. Kelly will discuss the resources available to thyroid cancer patients as they face physical and emotional challenges during their cancer journey. Topics will include thyroid hormone replacement, radio-active iodine, surgery options, the low iodine diet, and emotional support needs.
Dr. Catherine Kelly, MD, FRCPC is a Clinical Educator and an Associate Professor of Medicine at the University of Toronto. She is the Division Director of Endocrinology at Women’s College Hospital.
For more information, visit the Wellspring website.
THYROID CANCER CANADA PATIENT FORUM MAY 28, 2011
THYROID CANCER CANADA
Patients Forum (morning)
Annual General Meeting (AGM) (afternoon)
Date: Saturday May 28, 2011
Time: Patients Forum 9:00 -12:00 am, AGM 1:00-4:00pm
Location: Burlington Arts Centre
1333 Lakeshore Road
Burlington, ON L7S 1A9
(exit the QEW at North Shore Blvd. E.)
Room: Shoreline/Rotary-Lakeside Room
Click here to see the flyer.
This past week has been a challenging one. At no other time during my recovery have I felt more tired and worn out. Each day, I have a nap and today I had two naps. Each nap lasts about 2-3 hours. I'm in touch again with my inner baby bear. Each day I feel progressively more and more tired and it is feeling more difficult to do stuff. I am learning a lot about slowing down and not being too hard on myself. It's really hard because sometimes it feels like life is passing me by while I sleep. I don't like this feeling and I want to be a part of all that is going on, but my body is telling me otherwise and I am learning to listen to it more. The body is very intelligent, how soon I forget that.
So I have given myself even more permission to slow down and do less. Even a day filled with appointments and support groups will get exhausting and be counterproductive. I really need to be right now. I am consciously slowing down even more. This healing will take time.
Yesterday, I went to the Patient Forum presented by Thyroid Cancer Canada in Burlington. Burlington is about 1 hour away from Toronto and above all days, this was the day I forgot to take my Eltroxin. (Eltroxin is a thyroid hormone pill.) Since I had a total thyroidectomy, I will be dependent on a daily dose of this pill for the rest of my life. So the lack of Eltroxin did not help my fatigue at all. I have learned that I will need to keep a back-up supply of Eltroxin in my purse for instances like these.
The attendees included supporters, patients, and survivors. The patients and survivors ranged from the very recent patients who still had their stitches and stiff necks to veterans who had been beyond their five year mark. I was amazed with how many other young women were there. Many of the folks in the room were older than 50 but there was still a sizeable young population including a few men.
The first speaker was Dr. Meera Luthra, an endocrinolgist and assistant professor in Hamilton who presented "An Overview of the Treatment and Follow-up of Thyroid Cancer." I got a better understanding of how to interpret my blood test results in regards to the TSH, T3, and T4 levels. I also learned that the recurrence rate of thyroid cancer is 30% at 30 years. I was also reminded that thyroid cancer would require lifelong surveillance so that no matter where I move or where I live, I will need to have my Tg checked regularly.
My favourite part of the presentation was by Shalimar Manuel, BScHE, MA. Shalimar is a thyroid cancer survivor and I first learned about her in this short video.
I also read Shalimar's Butterfly Tale in the Young Adult Cancer Canada Profile section here. Shali had attended the same retreat that I did twice and also as a presenter.
Shali has not only chosen to share her thyroid cancer experience, she has decided to focus her graduate studies on it. She completed her Master of Arts degree at Dalhousie University entitled, "Surviving=Thriving: Exploring the impact of thyroid cancer on young women's quality of life." Her two research questions were:
1. How has the experience of having well-differentiated thyroid cancer impacted young women's perceptions of their quality of life?
2. From a health promotion perspective, what, if any, programs and services are needed to increase support for young adult women thyroid cancer survivors and their loved ones?
This information is so necessary, especially given that thyroid cancer has the fastest growing rate of occurence and is the # 5 cancer in women and the #1 cancer in young women.
Shalimar summarizes her findings under the overarching theme that: Thyroid cancer is biographically disruptive. Under this theme, she has identified 3 key themes:
1) Disruption of Taken-for-Granted Assumptions and Behaviours
- Lost Sense of invincibility
- Lost Trust in Body
- Lost Sense of Control
- Changes to Faith
- Increased Appreciation
2) Lost Sense of Normalcy
- Feeling Different from Pre-Cancer Selves
- Feeling Stigmatized and Alienated
- Changes in Social Roles and Relationships
- Changes to Career Paths
- Struggling to Regain a Sense of Normalcy
3) Need for Increased Psychosocial Support
- Gaps in Emotional Support
- Gaps in Informational Support
- Gaps in Instrumental Support
I think that this above list (or parts of it) could be incorporated within the standard lists of thyroid cancer side effects and symptoms. These standard lists do not incorporate the psychosocial impact of having a thyroid cancer diagnosis. The emphasis for most endocrinologists seems to be that this is the "best cancer" and that it has a 95-99% cure rate. Unfortunately, this causes a huge oversight that the impact of the disease has on the patient including the length of time for recovery as well as the interruption it causes to daily functions.
The thing that Shali shared which mattered most to me is that the healing does take time. Many of the thyroid patients experienced increased fatigue even at the year mark. They experienced tiredness even when their endos (endocrinologists) were saying that it wasn't because of their operation. Plus, some of them wondered whether or not they would feel normal again. Currently, I am experiencing all of these things. I was happy to hear that I was not the only one experiencing this high level of fatigue, that it is normal, and that I will eventually come out of it. Things will eventually normalize and balance out. That was such a relief because I was being hard on myself about my fatigue.
I asked Shali if her thesis was on the internet but she said that she could send it to me through e-mail. If you would like to see it, please e-mail me at: bluebutterflyblog33@gmail.com and I will send it to you.
Shali gave me a copy and I look forward to reading it.
The conference also allowed me, for the first time, to connect with so many thyroid cancer patients and survivors within my age group. Just like the Young Adult Cancer Canada Retreat Yourself in Newfoundland this year, I was meeting people again who "got it". Often, the first thing we discussed were our scars and how we have treated them. Thyroid cancer scars can be quite visible. Unless a patient wears a scarf or turtle neck, the scar can be quite detectable. According to many, they said Meaty (my scar) looked good for having been operated on January 26th this year. One woman had an almost invisible scar from her February surgery. (I looked on in envy.) She said it was Bio-Oil and Vitamin E. A few other survivors sang the praises of Bio-Oil. I've got to find me some of this Bio-Oil. We talked about how the surgery impacted our singing and speaking voices. One patient said her laryngeal nerve was damaged so ultimately her vocal chord was partially paralyzed. I am still mourning the change in my voice a bit. My voice is still recovering. On another note, I even met a woman who had the same surgeon as me. We expressed difficulties in feeling understood by our endos.
A few survivors had or were preparing to have a second surgery or multiple surgeries. (Having gone through it once already, I would find that so terrifying now. Luckily, my cancer was detected last fall with the fine needle biopsy.) Some of the women's cancers were not detected until after a partial lobectomy (or hemi-thyroidectomy) surgery so they would need to have a second surgery to remove the entire thyroid. I think I am blessed that I had a skilled surgeon and all my tests revealed the cancer early so I only had the one surgery. My surgery was relatively simple (aside from the lymph node and 3 of 4 parathyroid removal) compared to others who had neck dissections to remove larger tumours (greater than 4 centimetres) and numerous lymph nodes (greater than 20). I commend these survivors for their optimism and positivity. We have all had different challenges with this and shared strategies to cope.
Attending this annual event really helped me to gain an appreciation for the advocacy required to get public attention for thyroid cancer. It is hard to believe that thyroid cancer is occurring more than any other form of cancer and is the number one cancer in young women, yet I and most of my peers know very little about it. I met two survivors and patients who came up to me and said they read this blog. I felt great when I heard this and it reminded me of why I created this blog and how important it is to I share my own story, information, and connect with other survivors.
As I continue to recover, I am learning so much. Physically, I require a lot of rest and focus on my self-care but psychosocially, writing is becoming more and more a medium for me to connect with others. I am finding a lot of things difficult to do these days. Thankfully, I have still been able to write through this process.
I end with Shali's words of advice for Moving forward:
1. Be present and know it's okay to struggle.
2. Let go of "should have's" and "supposed to's".
3. Seek support if needed.
4. Self-care.
5. Self-advocate.
These are great words of advice for anyone not just thyroid cancer patients. Couldn't have been said any better!
Group Art
I wish to share this beautiful mural of a garden completed in pastels, chalk, paint, and markers. I attended an art therapy group for cancer patients and survivors for the last several weeks and on the last day we completed this work together. This was an amazing experience for me. Although it was not my first encounter with art therapy (I have participated in individual art therapy years ago), but it was my first group experience. I must say that it is especially rewarding since we all share our stories and offer each other support on this journey. Often, I connected with things with others. I am now more inspired to do more art boldly and shamelessly.
We made it [through our thyroidectomies]!!!! Chrissy, Nadia (me), and Lynn are all smiles. I met these ladies at the Thyroid Cancer Patients' Forum in May and now they are here at another Thyroid Cancer Patients' Forum today in Toronto. This forum was organized by Wellspring cancer support centre and held at Women's College Hospital. The talk was called "Thyroid Cancer: Navigating Support and Education Resources for Patients" presented by Dr. Catherine M. Kelly, MD, FRCPC a Clinical Educator and an Associate Professor of Medicine at the University of Toronto. She is the Division Director of Endocrinology at Women’s College Hospital. Often at these forums, there is a lot of clinical talk and then after you get to share information and concerns with other patients and survivors. This particular forum today was pretty intimate with only about 7 of us patients in attendance. (I recognized 4 of these patients, myself included. :-) I had a number of my questions answered and I must say I'm a little pissed. First, there are so many ways to "kill a horse" (or treat thyroid cancer, I know an ironic phrase for a vegan) depending on the endocrinologist and their experience, research studies, the surgeon's skill, intuition, and the direction of the wind, also seems to be a factor. All jokes aside (no seriously, can the side of the bed you wake up on be a factor?), is it possible that my experience of looking for other opinions related to my radiation dose were all for not? If you read this post, you'll get the idea. According to Dr. Kelly, she also agrees with the studies that have come out which do not indicate a difference in the effectiveness of a RAI dose of 30 miC versus one of 100 miC. You know when you here something over and over again and the lightbulb starts to come on? Well, this is what happens when I attend a forum like this. I learn more about my illness and how I can access better care. I am also so thankful to meet other thry'vors (thyroid cancer survivors) who have lots of information and knowledge to share. Chrissy recommended some excellent scar treatments (like Dermatix and silicone bandages) which I might be able to use in place of the steroid injections that my surgeon suggested. (Again, if the less invasive treatments don't work, I can always do the steroid injections.) Then Lynn recommended a good book that I have been meaning to read called "EVERYTHING CHANGES: The Insiders Guide to Cancer in Your 20s and 30s" by thyroid cancer survivor, Kairol Rosenthal. This book contains many stories from young adults also dealing with various cancers. Definitely, a summer read. (I'm currently reading two other books already so Rosenthal's book will have to be next.)
I am so thankful for this forum, the wisdom of patients and survivors, and the many options out there for treatment. I am also so thankful that Chrissy and I could have lunch and share our experiences and resources. I leave this day once again inspired.
Thai Cooking At Wellspring
I attended a Thai Cooking workshop at Wellspring Cancer Support Centre today. Our instructor was Lisa Shamai of Lisa's Kitchen. I learned to make some delicious meals and got great recipes too. I got to taste these amazing dishes and guess what? No animals here baby, just vegan goodness.
I handrolled these Thai Fresh Spring Rolls myself. They were amazingly good with this simple dipping sauce of lime juice, maple syrup, coriander leaves, and chili pepper. A pansy and a mint leaf were delicately placed on the rice paper before I wrapped these babies to give them a delicate touch.
This Green Mango Salad was delightful and refreshing. Lisa held the fish sauce for me (due to my allergy and vegan-y) but I loved every bite of chopped peanuts and cashews. Sweet and slightly sour and perfectly Thai. Yum!
The Thai Spring Soup was a little bitter for my taste due to the composition of the broth. Lisa taught me a new technique and one that I read about last night in Vegan on the Cheap by Robin Robertson-- how to make your own broth. It's so cheap and simple, I wondered why I didn't discover this ages ago. Take all of your vegetable scraps like carrot peels, potato skins, celery leaves and boil them to make broth. This broth can be frozen and stored and reused, plus, you know what goes into it. You can also decide to add fruit peoples depending on the soup you wish to add it to. Lisa used lime peels for this soup (hence the bitter taste), however you may use pineapple, mango, lemon, and/or orange peels.
Painting at Princess Margaret Hospital
I attended a Painting Workshop at Princess Margaret Hospital, a cancer research hospital located in Toronto. It was organized by Youth In Time, a collective of workshops and classes for young adults with cancer, and the Art for Cancer Foundation. I learned about it first from Paulene Harvey, facilitator of Youth In Time. The lovely thing about this program is that it is free.
I loved this opportunity to express my creativity. Cid Palacio, our instructor, encouraged us to pain abstractly. I experimented, played, and imagined with the colours-- first, in black and white and then in colour paints.
Here is a video about this experience:
Creating from Within-workshop of July 12,2011
Experimenting with splashes of value
I loved using the knife to slather on paint like butter on bread.
I experimented with different ways to apply the paint and mix colours.
Then we were to imagine a garden. I painted one with pink and coral flowers and bright sunshine. I imagine myself walking a long a path and soaking up the sunshine, feeling the warmth on my skin.
Neck Check for Thyroid Cancer Awareness September 25, 2011
There is an upcoming event organized by Thyroid Cancer Canada called the
NECK CHECK FOR THYROID CANCER AWARENESS- TORONTO
Time
Saturday, September 10 · 9:30am - 6:00pm
Location
Sherway Gardens Shopping Mall, Sears Court
25 The West Mall
Created By
Thyroid Cancer Canada
More Info
Visit Thyroid Cancer Canada's booth in the Sears Court. Meet representatives of TCC, get information about thyroid cancer, and have your neck checked for thyroid nodules by specialist surgeons (members of TCC's Medical Advisory Panel).
Drs. Irving Rosen and Raymond Ng, specialist surgeons will be available to answer your questions about neck nodules.
For details, see http://www.thyroidcancercanada.org/tcc-upcoming-events.php
NOTE: If you have a weak stomach or are weary of having a thyroidectomy, do not watch the youtube video clip attached to this link. I'm glad that I avoided these operation videos before my surgery since their is a clip of a "freshly removed" thyroid complete with nodules. Thanks but no thanks.