Fatigue and Fire

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!