Growing out my hair will take quite awhile but until the top catches up I need to keep the back shorter.
Sunday, 30 April 2017
First haircut
Well 29 weeks post chemo and I got my first real haircut. She cleaned up the back and sides so I feel like I have a more intentional pixie. It was getting pretty thick and mullet like at the back!
Saturday, 29 April 2017
Weight gain and cancer treatment
A lot of people think cancer/cancer treatment makes you lose weight! Well I learned the hard way that wasn't the case. Many women who do breast cancer treatment gain - the chemo puts you into (usually temporary) menopause, and the steroids give you an insatiable hunger and bloating. You are either nauseous or hungry and for me I craved not so healthy foods. Add extreme fatigue and with me a picc line - I was WAY less active during chemo as well. It is so frustrating! The good thing is you lose a lot of the bloat after chemo ends, and if you eat right and exercise you can get your body back after treatment ends.
One more gift from cancer!!
https://www.ihadcancer.com/h3-blog/03-11-2016/5-reminders-for-anyone-struggling-with-weight-gain-from-cancer-treatment
One more gift from cancer!!
https://www.ihadcancer.com/h3-blog/03-11-2016/5-reminders-for-anyone-struggling-with-weight-gain-from-cancer-treatment
Friday, 28 April 2017
Thursday, 27 April 2017
Lace up for love
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1168455&supId=445592507I am doing the Lace up for Love 5km Run/Walk for Wellspring on May 14th! Wellspring is an awesome place that I’ve been spending a lot of time at recently, as you can see from all my posts!!They help people like me cope with their cancer diagnosis and transition back to life after treatment is over. All programs are free for people with a cancer diagnosis, and they rely on fundraising, so I wanted to do the run to give alittle back. :)
Art therapy#4
I had my fourth art therapy session yesterday, and it followed my checkup with doctor easson.
Our first activity was a warm up one with paper cutouts. This is mine but it takes some explanation. It was supposed to be how we felt that day. The green circle is me when I am feeling well. The brown blocks are chemo, radiation and surgery. The blue waves are my mental health. The two hearts are jeff and i, and how he supported me at my appointment that morning (and all the way through). The sun has four rays for the four doctors that helped me. 😊
It's funny because it kind of looks like a nature scene too. The instructor also mentioned that the brown pieces are not touching the others, and maybe that's because it is behind me now.
We then did some painting with acrylic paint. I made two images, the first is a sunset -or maybe a sunrise? With a bridge. I was thinking about crossing the bridge to recovery.
The other is a small ship in the ocean - kind of what having cancer can feel like, trying to fight against the waves and make it through.
The instructor asked me if I thought these are my inside versus outside personas. It kind of caught me by surprise but maybe she has a point! Trying to be strong and "recovered" when I haven't quite made it back to shore yet...
Wednesday, 26 April 2017
Follow up with Dr. Easson
I had my six month follow up with my surgical oncologist today. I felt fine driving there but going up the elevator to the 12th floor I started to have some anxiety. Not a big fan of going there! Jeff was already at work but came over to be with me for the appointment which was nice.
Her fellow talked to me first and did a physical exam. Then Dr. Easson came in to chat. She genuinely cared about how I was doing and checked on my plan for returning to work. I told her I am aiming for July and she said if I am not ready at that time to come talk to her or Dr. Hunter. She said it is better to be fully ready when you go back then go before you are and having to take more time off. She said many women find this stage the hardest part, when you are done treatment and trying to deal with the emotional aspects of everything we have gone through. I appreciated her support.
She said that her and Dr. Conrad will take turns seeing me every 6 months. So I won't see Dr. Easson again until next spring. But I do have to go for a mammogram on May 25th, for my "annual" one - the one last time was my first and was for diagnostic purposes, but this one is a new baseline she said.
It all sounds good to me, and even though the hospital visits aren't that easy to face, I am glad for the ongoing monitoring.
Fear of Recurrence workshop Part 1
On Monday, I went to a Wells Talk at Wellspring on Fear of Recurrence. It is part 1 of 2, and it was really interesting and helpful.
The speaker was a psychologist and spent time up front talking about what a recurrence is (different kinds), what triggers our anxiety or fear, responses to fear (flight, fight, freeze, freak).
We then got into how avoiding fear doesn't heal it. What's important is to adopt a self-loving relationship with yourself. Happiness is an inside job, and you need to love, honour and cherish yourself.
She talked about statistics for a bit, and said they are a story about a group of people, not an individual. They are also not facts. They are taken from studies that are often several years old.
Related to the statistics discussion, she then read this excerpt from "When Breath Becomes Air" - I actually read this whole book months ago in 2 days. It is written by a neurosurgeon who was diagnosed with stage 4 lung cancer.
I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
The reason doctors don’t give patients specific prognoses is not merely because they cannot. The range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer.
What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.
I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I’ve not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on."
Paul Kalanithi is a chief resident in neurological surgery at Stanford University.
We had a discussion about existential authenticity as a group. She said it means "Being real (here) in the now." Fear is very future oriented, and regret is past oriented. What is key is to live in the present, find what is important to you and live your values. No statistics can tell you what will happen to you. People who have dealt with cancer face uncertainty but EVERYONE faces uncertainty. People without cancer perhaps have an illusion of certainty. And mine has been taken away a bit. But how am I going to live with uncertainty? That is what I need to figure out and it is an internal/spiritual problem.
We are all so hung up on doing rather than being. Our intrinsic worth resides in our being, not our doing.
To be continued next week....
Sunday, 23 April 2017
Anna
I came across Anna Craig's blog earlier on in my cancer journey. She was a fellow triple negative breast cancer patient and unfortunately her cancer metastasized. She lived not far from me and I believe she had the same medical oncologist based on her descriptions. She had a strong voice in the "Metavivor" community and was very inspiring. She passed away a few days ago, and leaves behind her husband and her two children. Her writing is beautiful and introspective and compelling. Here is one example.
Over the last two years, I have found awkward peace with my diagnosis. It is a complicated acceptance that has changed the way I look at living. For me, cancer has magnified my humanity and intensified my relationship with mortality.
Dying is integral to the human experience. It is not unusual to have to face death at some point in your life. What is unusual is that I have to face it in my thirties when I just started to get the hang of living. To live so closely with death and dying in your thirties is not normal. It is with this in mind that I choose to live as real as possible. To live exposed and vulnerable so that I am open enough to absorb all that life has to offer. In one moment I can feel like I’m being smothered by darkness and then in an instant without explanation I can be uplifted in the light and hope.
Its in the grey between those contrasting moments where I struggle the most. Life is complicated that way. Complication is human and its real. Living with cancer and uncertainty magnifies this. It creates an urgency to live now and in the present. I find myself desperately trying to capture my potential, grasping and clawing at every opportunity. My cancer has forced me to live in the moment. To live fully in a life that is condensed.
As a culture we tend to celebrate that way of living. We build our inspiration from people who we believe exemplify living life to the fullest. Living this way is exhausting. Living in the moment without confidence in your future can be ominous. It can be complex and conflicting. There is both freedom and oppression in living condensed.
http://www.youngadultcancer.ca/living-condensed-and-without-limitation/
Healing Journey and Return to Work
This past week I went to my third Healing Journey workshop and the focus was on using the mind to heal the body. We spent a lot of time on mental imagery and did an amazing guided meditation too.
Continuing from the previous week, the focus was on moving emotions out of the deeper mind into conscious awareness, and eventually "discharging" some of it through this process, in the hope of reaching a state of fairly constant calm joyfulness, which can only happen when we are not tossed around by uncontrolled thoughts and distress.
In the guided imagery meditation, we got to pick our place (and I picked Sans Souci beach). We added to the mediation a piece about fighting the cancer in our bodies. I focused on seeing my body as a garden, and my mind as the gardener, removing the cancer weeds and leaving intact the healthy plant cells. It really helped me feel more at peace and content.
__
I also went to my first return to work class at Wellspring this week. There were about a dozen people in the class and several that I already know. It was really good, I know I will enjoy it and gain some good coping skills. We did a questionnaire about the readiness to return to work, and we will be revisiting it in the last session to see how far we have come. The questionnaire talked about desire/anxiety to return, confidence to manage workload, the schedule, your boss, etc, energy level, concentration.
We had to list our 3 biggest challenges for returning and we discussed challenges as a group. Mine were around the current director, work-life balance and stamina/concentration for a full work day. We all had similar concerns! We also talked about benefits of returning too though - and that helped to focus on some of the good things too :). It will be nice to get my full salary again. LTIP is of course a great thing, but sometimes it has been tight for me to manage on 70% of my salary. In addition to more money - There is definitely a sense of fulfillment I get from work that I don't get from other things and I know that. It will be good to take that on again when I am ready.
The facilitator did say a gradual return to work is critical, over 6, 8 or even 12 weeks.
The facilitator talked about the iceberg metaphor which really resonated with me. All people see when you go back to work is the tip of the iceberg - mainly your external physical state - and that looks fine. I think I look pretty "fine" on the outside - my hair is growing back, I am in a pretty good shape physically now etc. Going back to work, I must be "back to normal" right?
What people don't see is the rest of the iceberg under the water, which has things like worry, anxiety, emotional distress, fatigue, brain fog, etc. Right now is my time to experience and process everything I have been through, and deal with the rest of the iceberg.
I am very thankful that I have an employer that has allowed me to be off work for the cancer treatment and recuperation period. Part of me does feel a tiny bit of guilt not being back to work yet. BUT - I have been with the government for 14 years now, and have compromised my own personal time, health and life on numerous occasions to get work done for the organization. This is my time right now and I need it. By doing this work with Wellspring I will be in a better state of readiness when I go back.
Continuing from the previous week, the focus was on moving emotions out of the deeper mind into conscious awareness, and eventually "discharging" some of it through this process, in the hope of reaching a state of fairly constant calm joyfulness, which can only happen when we are not tossed around by uncontrolled thoughts and distress.
In the guided imagery meditation, we got to pick our place (and I picked Sans Souci beach). We added to the mediation a piece about fighting the cancer in our bodies. I focused on seeing my body as a garden, and my mind as the gardener, removing the cancer weeds and leaving intact the healthy plant cells. It really helped me feel more at peace and content.
__
I also went to my first return to work class at Wellspring this week. There were about a dozen people in the class and several that I already know. It was really good, I know I will enjoy it and gain some good coping skills. We did a questionnaire about the readiness to return to work, and we will be revisiting it in the last session to see how far we have come. The questionnaire talked about desire/anxiety to return, confidence to manage workload, the schedule, your boss, etc, energy level, concentration.
We had to list our 3 biggest challenges for returning and we discussed challenges as a group. Mine were around the current director, work-life balance and stamina/concentration for a full work day. We all had similar concerns! We also talked about benefits of returning too though - and that helped to focus on some of the good things too :). It will be nice to get my full salary again. LTIP is of course a great thing, but sometimes it has been tight for me to manage on 70% of my salary. In addition to more money - There is definitely a sense of fulfillment I get from work that I don't get from other things and I know that. It will be good to take that on again when I am ready.
The facilitator did say a gradual return to work is critical, over 6, 8 or even 12 weeks.
The facilitator talked about the iceberg metaphor which really resonated with me. All people see when you go back to work is the tip of the iceberg - mainly your external physical state - and that looks fine. I think I look pretty "fine" on the outside - my hair is growing back, I am in a pretty good shape physically now etc. Going back to work, I must be "back to normal" right?
What people don't see is the rest of the iceberg under the water, which has things like worry, anxiety, emotional distress, fatigue, brain fog, etc. Right now is my time to experience and process everything I have been through, and deal with the rest of the iceberg.
I am very thankful that I have an employer that has allowed me to be off work for the cancer treatment and recuperation period. Part of me does feel a tiny bit of guilt not being back to work yet. BUT - I have been with the government for 14 years now, and have compromised my own personal time, health and life on numerous occasions to get work done for the organization. This is my time right now and I need it. By doing this work with Wellspring I will be in a better state of readiness when I go back.
Friday, 21 April 2017
Art therapy weeks 2 and 3
Art therapy is going well!
In week 2 we had to paint ourselves as a tree. I did a palm tree :). I feel like a palm tree is an ideal state, it stands tall and is fairly resilient to tropical storms and wind, but it also reminds me of Jamaica and I love lying on the beach watching the palm tree sway in the wind. Resilient and goes with the flow!
In week 3 we worked with sculpty and clay. I made a few things and I might paint them next time once they dry. I made a Christmas ornament that has a leaf on it and says "hope, faith, love". I did a healing heart stone. I did a tree in clay and also a turtle in clay. The turtle reminds me of the ones we saw in the pond in Jamaica and it is also a reminder to slow down and take care of myself going forward. One of my friends in the class said to put it in my office when I go back to work so it is a reminder for me!
Really liking the art therapy process.
Wednesday, 19 April 2017
Sunday, 16 April 2017
Friday, 14 April 2017
Wednesday, 12 April 2017
Session with Doctor Hunter & Healing Journey Session #2
I had a session with Dr. Hunter this week. It's been a couple months since we have met, as I didn't have any more time booked and so getting more sessions arranged took some time! He is so busy, he can only see people once a month basically. It is sad there is such high demand for him.
The session focused on two things that have been on my mind a lot, which is fear of recurrence and returning to work. Not necessarily new topics but now that treatment is done, I am thinking about both a lot more.
I told him about how the AYA lectureship triggered me and we went into it in more depth. He said there are two ways to go with fear of recurrence/death and one is to get busy with your life and not think about it, or look it straight on and try to process what you are feeling. I said I didn't think I could turn my head, so we talked about it more in the session. I think what I struggle with a lot is not having control and dealing with the fear.
I know my cousin Carmen didn't want to die. I know I don't want to either. It is so unbelievable unfair that cancer took her away. I think about her and her husband and her daughter a lot.
For me, it is frustrating to have the fear in the back of my mind. I don't want to feel that way. I wish I was one of those people that could turn their head. Every little symptom, ache, pain, etc makes me worry it is cancer, as unrealistic as that is. I know I did all I could and treatment gave me the best possible chance.
We talked about my guiding principles - I have started to write them out. The number one priority for me is to have harmony, balance and well-being. This will be more important to keep focus on when I return to work. I don't want to become the workaholic I was, or be so consumed by work again. And I think from a health perspective I can't. Stress is a killer and my health is number one.
I worry about being able to perform at the same level as I once did. Because I do plan to insist on work-life balance. And I do think I still have some chemo brain too. Dr. Hunter said that it's just like lifting weights, you won't be able to lift 50 pounds on day one. You have to retain and rebuild your muscles again. That made me feel a bit better, as I do worry I will be expected to be 100% immediately.
The other thing is I have changed. I might not be the same person at work that I once was. As someone who gave everything to their job and their staff - I have a different perspective now. A more selfish perspective. Because I have to remember my guiding principles and live my life for me, now more than ever. I won't know until I try it though, if this particular job is still for me.
We talked about working the things that are important to me into my life even after I go back to work. Like taking care of me through exercise and eating well, meditation and healing practices - this can't take a backseat when I go back. Like travelling - making it a priority to take time off, paid or unpaid, and see the places I want to see. I need to establish my own personal boundaries, so I am not pushed too hard and I don't forget what is important to me.
I think a lot of these feelings are common in people who have gone through cancer. You've been given a second chance and you want to make the most of it. I feel a sense of urgency, to do all that I want to do.
__
I also had my second healing journey session this week, and it was about managing your thoughts. Perfect topic for where I am right now. The facilitator talked about how thinking is a voluntary act (we choose what we think) and all emotions are preceded by thought. We can control our emotions by controlling our thoughts.
To manage thoughts and feelings:
1) acknowledge the thought - and be aware of the emotions that follow
2) express the thoughts and feelings - through talking to others, writing about them, exercising or playing music, doing relaxation exercises like deep breathing, meditation, guided imagery
3) substitute more positive thoughts and actions - e.g.: replace "There is nothing I can do" with "I will do everything I can to help myself"
It sounds so logical but this really helped me and I think it will help me with my difficult thoughts about the cancer returning. As a shortcut to remember the 3 steps, she said to think: Identify, Discharge and Replace.
We ended the session with a guided imagery meditation, and the healing circle.
The session focused on two things that have been on my mind a lot, which is fear of recurrence and returning to work. Not necessarily new topics but now that treatment is done, I am thinking about both a lot more.
I told him about how the AYA lectureship triggered me and we went into it in more depth. He said there are two ways to go with fear of recurrence/death and one is to get busy with your life and not think about it, or look it straight on and try to process what you are feeling. I said I didn't think I could turn my head, so we talked about it more in the session. I think what I struggle with a lot is not having control and dealing with the fear.
I know my cousin Carmen didn't want to die. I know I don't want to either. It is so unbelievable unfair that cancer took her away. I think about her and her husband and her daughter a lot.
For me, it is frustrating to have the fear in the back of my mind. I don't want to feel that way. I wish I was one of those people that could turn their head. Every little symptom, ache, pain, etc makes me worry it is cancer, as unrealistic as that is. I know I did all I could and treatment gave me the best possible chance.
We talked about my guiding principles - I have started to write them out. The number one priority for me is to have harmony, balance and well-being. This will be more important to keep focus on when I return to work. I don't want to become the workaholic I was, or be so consumed by work again. And I think from a health perspective I can't. Stress is a killer and my health is number one.
I worry about being able to perform at the same level as I once did. Because I do plan to insist on work-life balance. And I do think I still have some chemo brain too. Dr. Hunter said that it's just like lifting weights, you won't be able to lift 50 pounds on day one. You have to retain and rebuild your muscles again. That made me feel a bit better, as I do worry I will be expected to be 100% immediately.
The other thing is I have changed. I might not be the same person at work that I once was. As someone who gave everything to their job and their staff - I have a different perspective now. A more selfish perspective. Because I have to remember my guiding principles and live my life for me, now more than ever. I won't know until I try it though, if this particular job is still for me.
We talked about working the things that are important to me into my life even after I go back to work. Like taking care of me through exercise and eating well, meditation and healing practices - this can't take a backseat when I go back. Like travelling - making it a priority to take time off, paid or unpaid, and see the places I want to see. I need to establish my own personal boundaries, so I am not pushed too hard and I don't forget what is important to me.
I think a lot of these feelings are common in people who have gone through cancer. You've been given a second chance and you want to make the most of it. I feel a sense of urgency, to do all that I want to do.
__
I also had my second healing journey session this week, and it was about managing your thoughts. Perfect topic for where I am right now. The facilitator talked about how thinking is a voluntary act (we choose what we think) and all emotions are preceded by thought. We can control our emotions by controlling our thoughts.
To manage thoughts and feelings:
1) acknowledge the thought - and be aware of the emotions that follow
2) express the thoughts and feelings - through talking to others, writing about them, exercising or playing music, doing relaxation exercises like deep breathing, meditation, guided imagery
3) substitute more positive thoughts and actions - e.g.: replace "There is nothing I can do" with "I will do everything I can to help myself"
It sounds so logical but this really helped me and I think it will help me with my difficult thoughts about the cancer returning. As a shortcut to remember the 3 steps, she said to think: Identify, Discharge and Replace.
We ended the session with a guided imagery meditation, and the healing circle.
Sunday, 9 April 2017
Saturday, 8 April 2017
Thursday, 6 April 2017
Art therapy and the Healing Journey
This week I did my first session of art therapy and also the first of 4 healing journey workshops at wellspring.
Art therapy was pretty cool, for the first session we did photo collages - something easy to start. Basically the instruction was to put together a collage of images or things that resonate with you. I did 2, and they focused on things that make me happy and help me heal - music, traveling, nature, my garden, walking Mimi, the ocean, the beach, butterflies, the cottage.
The Healing Journey was helpful too, this first level that I am in is focused on dealing with cancer stress. The facilitator talked about the roller coaster of emotions we have with a cancer diagnosis. There was a discussion of "What is healing" and how it is different than "curing." Healing is physical, emotional, social and spiritual, and is the process "to make whole." Its beyond the state of disease, it is about reaching a state of harmony, balance and well-being.
There was a bit of discussion amongst the group as well, and everything people said I could relate to - e.g.: post treatment feeling worse (at least emotionally) - being numb during treatment and now feeling like what is next. How after the relief of being done treatment you need to give yourself space to fall apart - and to heal.
There was also a story that the facilitator read, called "The Elephant and the Sculptor."
"An indian sculptor who was famous for his life-sized statues of elephants was visited by a prince, who was intrigued by the man's skill at carving these giant animals. He asked the sculptor, How do you make them so alive? The sculptor replied, Great Prince, when I first quarry a piece of granite from the banks of the river, I set it down in my working place and study it, for weeks if need be, from every angle. While at first I see nothing by shapeless rock, gradually an outline begins to reveal itself to me - I sense that there is an elephant in there, eager to be free from the stone around him.
Only then do I start to work. For many weeks I work at the stone, always focussing on the outline, which becomes clearer and clearer with each passing day. I sense that the big fellow strains to be free. I know then that the single thing I must do is chip away at the stone, removing every part that is not elephant. What remains then must, be, can only be, the true elephant."
The session ended with a healing circle, where we all stand together and the facilitator talked about a healing light passing through each of us all around the circle. It was very calming.
Art therapy was pretty cool, for the first session we did photo collages - something easy to start. Basically the instruction was to put together a collage of images or things that resonate with you. I did 2, and they focused on things that make me happy and help me heal - music, traveling, nature, my garden, walking Mimi, the ocean, the beach, butterflies, the cottage.
The Healing Journey was helpful too, this first level that I am in is focused on dealing with cancer stress. The facilitator talked about the roller coaster of emotions we have with a cancer diagnosis. There was a discussion of "What is healing" and how it is different than "curing." Healing is physical, emotional, social and spiritual, and is the process "to make whole." Its beyond the state of disease, it is about reaching a state of harmony, balance and well-being.
There was a bit of discussion amongst the group as well, and everything people said I could relate to - e.g.: post treatment feeling worse (at least emotionally) - being numb during treatment and now feeling like what is next. How after the relief of being done treatment you need to give yourself space to fall apart - and to heal.
There was also a story that the facilitator read, called "The Elephant and the Sculptor."
"An indian sculptor who was famous for his life-sized statues of elephants was visited by a prince, who was intrigued by the man's skill at carving these giant animals. He asked the sculptor, How do you make them so alive? The sculptor replied, Great Prince, when I first quarry a piece of granite from the banks of the river, I set it down in my working place and study it, for weeks if need be, from every angle. While at first I see nothing by shapeless rock, gradually an outline begins to reveal itself to me - I sense that there is an elephant in there, eager to be free from the stone around him.
Only then do I start to work. For many weeks I work at the stone, always focussing on the outline, which becomes clearer and clearer with each passing day. I sense that the big fellow strains to be free. I know then that the single thing I must do is chip away at the stone, removing every part that is not elephant. What remains then must, be, can only be, the true elephant."
The session ended with a healing circle, where we all stand together and the facilitator talked about a healing light passing through each of us all around the circle. It was very calming.
Wednesday, 5 April 2017
passage by Pema Chodron
“There is a story of a woman running away from tigers. She runs and runs and the tigers are getting closer and closer. When she comes to the edge of a cliff, she sees some vines there, so she climbs down and holds on to the vines. Looking down, she sees that there are tigers below her as well. She then notices that a mouse is gnawing away at the vine to which she is clinging. She also sees a beautiful little bunch of strawberries close to her, growing out of a clump of grass. She looks up and she looks down. She looks at the mouse.
Then she just takes a strawberry, puts it in her mouth, and enjoys it thoroughly.
Tigers above, tigers below. This is actually the predicament that we are always in, in terms of our birth and death. Each moment is just what it is. It might be the only moment of our life; it might be the only strawberry we’ll ever eat. We could get depressed about it, or we could finally appreciate it and delight in the preciousness of every single moment of our life.”
Monday, 3 April 2017
AYA awards
Today I went to the AYA (Adolescent and Young Adult) Michael Kamin Hart awards at Princess Margaret. It was actually a lectureship and then a short ceremony for handing out the certificates and awards to the nominated staff.
I didn't know the topic of the lectureship in advance so I was a bit surprised when it was focused on end of life for AYA patients and how to support them through this diagnosis. It was led by a psychiatrist, and a lot of it did resonate with me in terms of facing your own mortality and the feelings associated with that. It was a bit hard to sit through though, I kept thinking about Carmen and I am not that far out from treatment myself, so I think I was a bit sensitive. I do get that they are educating their staff on this though, most of the room was hospital staff, and that of course is a benefit. It is more than just the medical side of things. AYA patients, especially those with a terminal diagnosis, face many different challenges and grieve their life being cut short. They need someone who will listen, who is compassionate, and who will help them navigate the time they have left, with as little pain as possible.
A couple things the doctor lectured about did really resonate with me.
One was when she said AYA patients feel robbed in the sense that they now worry about their own mortality. It is not something the average person from 18-39 worries about, and there is a lot of grief related to the "old you" and life before the cancer diagnosis. She also talked about anticipatory grief for those that are mourning their future. Pretty heavy stuff, but she also went into the do's and don'ts of caring for AYA terminal patients and I am sure people took things away from her material.
In another part of the lecture, she talked about how doctors think about their patients quite a bit, when they aren't with them. Whether it is planning treatment or ordering and reviewing test results, etc. It made me think of times when Dr. Amir said things that demonstrated this to me. For example, when I arrived for my first chemo I had done my bone scan the day or two before. He had looked at the scans himself before he saw me next, and he said that they looked good to him, but he had to wait for the radiologist to confirm, "because they go to school for XX years to be able to do that" - and he smiled. I liked that he was eager to look at my test results, even if it wasn't the official process, and that he took the time to try to reassure me when he saw me. He listened and remembered details too. When I took that one week break, I came back in and he asked right away "How was the cottage?" It's the little things that go a long way to show a doctor genuinely cares.
Finally the lecture wrapped up and the ceremony began. I think there were maybe a dozen nominations, and it was interesting to hear some of the nominators words for each. There were doctors, nurses, psychiatrists, social workers, and radiation techs nominated. Dr. Amir came in at the end for the certificates, I expect he didn't have time to attend the full event. He looked really happy when he accepted the certificate, and I am glad I got to see that. I am glad I nominated him. He is a great doctor, and deserves the recognition! I am hoping he appreciated the nomination.
Saturday, 1 April 2017
Follow up with Dr. Conrad
On Wednesday I had my follow up with my radiation oncologist, Dr. Conrad. I met with her and her fellow and got a full physical exam which was good - I always feel better when someone else does it even though I am doing monthly self exams. They asked me a bunch of questions too about possible symptoms I have, including bone pain, night sweats, unexplained weight loss, etc. I believe these are questions related to metastatic breast cancer symptoms and luckily I don't have any. Coincidentally I also saw an article about these symptoms posted on one of my groups so I will share it here for reference.
http://www.medicalnewstoday.com/articles/316558.php
It wasn't a difficult appointment by any means but for some reason I was emotional being there. I guess just going back to the hospital will always be a trigger. I remember sitting in that room when I had just done my first chemo, and I met Dr. Conrad for the first time. I got great news that day because my other scans were all clear. It isn't a bad memory but I remember how awful I felt symptom wise, I was so nauseous and tense with worry about everything I was going through, until I got that good news. It's been quite the roller coaster and I am still reflecting on it all.
I hope that the follow ups get easier but who knows. I know from other survivors I have come to know, they feel much the same. Its like you hold your breath with every physical exam, every mammogram, etc. I don't think it ever really goes away. You know first hand how quickly things can change.
http://www.medicalnewstoday.com/articles/316558.php
It wasn't a difficult appointment by any means but for some reason I was emotional being there. I guess just going back to the hospital will always be a trigger. I remember sitting in that room when I had just done my first chemo, and I met Dr. Conrad for the first time. I got great news that day because my other scans were all clear. It isn't a bad memory but I remember how awful I felt symptom wise, I was so nauseous and tense with worry about everything I was going through, until I got that good news. It's been quite the roller coaster and I am still reflecting on it all.
I hope that the follow ups get easier but who knows. I know from other survivors I have come to know, they feel much the same. Its like you hold your breath with every physical exam, every mammogram, etc. I don't think it ever really goes away. You know first hand how quickly things can change.
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