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Looking For Light in a Dark Room

AnnaCraigby Anna Craig, Living with Cancer

Over the past decade, the young adult cancer movement has been breaking ground in providing support and services for individuals under forty with a cancer diagnosis. The Young Adult Cancer movement is important and invaluable. Although many organizations provide excellent, innovative programming there is a big hole in services for metastatic and advanced young adult cancer patients.

Over the past two years, since my diagnosis of metastatic breast cancer, I have attended many YA cancer events, programming and conferences. I was lucky enough to meet Alicia Murchant at one of these conferences. Alicia has advanced ovarian cancer and like me has found that there is a substantial hole in young adult cancer services. I cannot describe in words how meaningful connecting with her has been for me.  Until our meeting, I felt like I was in a deep dark hole alone.  I would go to YA cancer events and feel isolated and alone.  Like the skeleton in the closet that no one wants to address. Meeting Alicia has made a huge impact in my life. No longer am I alone. Alicia just gets it. She understands the nuances in my darkest thoughts and my struggles with trying to come to terms with a stage four diagnosis. Without explanation she understands how loaded accomplishments are and the importance of creating a legacy. Alicia has been a long time advocate for young adults with metastatic and advanced cancer and meeting her has ignited my voice and empowered me to become one too. Most importantly my relationship with Alicia has taught me how important community and networks are. A community of people who are going through the same journey, dealing with similar things, and just get it.

The problems that exist in Young Adult programming are not owned by one organization alone.  For the majority, cancer is a hard bump in the road.  One of the significant questions for the young adult population is how to get your feet back on the ground after your life has been turned upside down by a cancer diagnosis.  This, for the most part, is a strength and the focus of existing YA organizations.  As such, they are very good at supporting and inspiring the majority.

Saying that, there is still an immense gap in support for those of us who are living with chronic and will one day be terminal cancer.  This gap reinforces and leads to feelings of isolation. The voice of the majority tends to conceal the voice of the minority. More than once I have met men and women, years into their journey that have never met another young adult with advanced/metastatic cancer. I don’t believe that existing cancer organizations purposely intend to contribute to this, but the lack of inclusivity and space for those of us living with incurable cancer contributes greatly to the problem.

Feelings of isolation can lead to individuals opting out. It’s not necessarily because of the differences between the two YA populations. Although I wish my cancer was just a bump in the road it does not harm me to be around individuals dealing with that reality. There are commonalities between both populations. Our lives are interrupted. Our treatments although different in duration are similar in nature. Segregation is not the answer. Both communities have a lot to give each other. It is also important for the majority to know that you can live with advanced cancer. Metastatic/advanced cancer is not an automatic death sentence. As such, I believe the way forward is through collaboration and balancing integration with specialization.

Young adult cancer organizations need to make a conscious decision in regards to their mandate. To choose to provide inclusive programming and support for the YA cancer community as a whole or to focus on providing support for YAs who are getting through and beyond cancer.  To provide inclusive support, there needs to be careful and detailed examination of what is being promoted, written, developed, acted upon and said.  Words have power and meaning and can set the groundwork for change.

First off, the term Survivor needs to be explored.  No matter how you choose to define it, it can be an isolating term.  The dictionary definition of survivor is as follows: “a person who survives, especially a person remaining alive after an event in which others have died”.  The cancer community as a whole loves to use this term.  It expresses clearly the cancer experience for the majority of people.  Cancer is something to get over, it can be an empowering experience, a catalyst for life change.  There is an impact from using that term for people like me, whose cancer experience will culminate with my death.  It plain and simple contributes to our perceived isolation.  It places us on the outside enviously looking in.  It reinforces our tragic circumstances and divides us from our young adult cancer peers.

Terms like ‘living with’ need to be added to mission statements that talk about empowering individuals to move through and beyond a cancer experience.  There needs to be space for the metastatic and advanced experience. Dealing with a terminal/chronic diagnosis, goals tend to become centered on acceptance. We strive to develop the skills and awareness to embrace the reality of our journeys. We look to find the best possible way to live full lives within our limitations. Finally we search to discover a way to face leaving this earth with the greatest amount of grace and dignity as possible.  This is hard work.  This is almost an impossible task.  How can you become comfortable with the fact that in the beginning of your life you are facing the end of your life?  This is the dark side of cancer.  This is the side of cancer that cannot be faced only through the power of inspiration and positive thinking.  Positive thinking is a loaded phrase.  It can lead people to believe that if you embrace and try to get comfortable about the dark side of cancer you are thinking negatively.

I believe that YA programming should not be focused on reinforcing the belief that positive thinking is the solution.  By focusing on that mantra organizations do a disservice to those of us who are dying.  There needs to be space for the fact that positive thinking is not the only solution.

 The AIDS movement, which changed the fates of thousands of dying people was not built from positive thinking.  Change happened because people were angry. Access to drugs came about because people stood up and said “this is not acceptable”. It is not acceptable that those of us with advanced disease cannot access the drugs we need because of bureaucracy and the screwed up drug trial system. It is not acceptable that many provinces do not cover drugs like oral chemo.  It is not acceptable that as an act to save our lives some of us have to go out of country to access up and coming drug trials.  It is not acceptable that we are dying.  Empowerment and positive thinking is important but so is addressing the dark side of cancer.  Young adult organizations need to decide whether or not they will take a stand with those of us who are dying and living chronically.  They need to explore how they can contribute to the empowerment of those of us who cannot get past our cancer experience. They need to help end isolation and take affirmative action towards change.

I have metastatic breast cancer. I am a mother of two, wife, retired intern architect, cancer advocate. I advocate not because I want to but because I have to. @annamecraig

This entry was posted in all, Living with Cancer, Living with Cancer, Young Adults and tagged , , . Bookmark the permalink.

11 Responses to Looking For Light in a Dark Room

  1. Tim Buckland says:

    Hi Anna,

    I have to say that this is a wonderful article articulating the struggles of yet another side of young adult cancer not on the global radar. I was fortunate enough to be diagnosed with a disease that had a successful treatment regimen but completely agree that there need to be increased support for patients who are not as lucky. I can only imagine the isolation factor of going to a young adult retreat or support group where people are talking about how cancer has impacted their lives and being the only one in your situation. These are programs in place to decrease isolation not increase it.

    I also agree that the term survivor is not a good one. It absolutely separates patients like yourself who have a continued struggle with your disease but also doesn’t appropriately describe a lot of the other side either. I use the term because it is universally acceptable but dislike it. Unfortunately, we are in a system where semantics are a large portion of our care. I heard the term survivor defined as “anyone that has been told they have cancer and anyone impacted by the disease (ie. caregivers).” The healthcare system is trying to find a single word to define everyone impacted by cancer, I don’t believe that is possible.

    Thank you for sharing this post, it certainly opened my eyes.

  2. Rae Michelle Ponce says:

    Thanks so much for this! Though I missed being considered YA by 5 years, I feel very much like almost half my life is being cut short. I was diagnosed last summer with stage 4 colon cancer with mets in liver, lungs,lymph nodes, adrenal glands, spine, and more recently, uterus. I have an adult son,22, who has two little ones,3 & 5, and I also have two daughters, 5 & 8. I feel like an outsider most of the time, and get frustrated when people tell me to stay positive, like I’m ever going to be cured. I actually have had people scold me for being “negative” when I speak of the reality of my disease. I feel a glimmer of light knowing I’m not alone in my awkward predicament of looking fine, but literally dying. I don’t know what to think or how to feel. I want to enjoy every moment with my kids, but it’s so HARD. I am looking for a support group and hoping I’ll find one that will help me make the most of whatever time I have left.

  3. Pingback: Looking For Light in a Dark Room | Cancer Knowledge Network - ¡Mela-NO-MAS! My Melanoma Journey

  4. Dena Stern says:

    I am not sure I have the words to express how much this means to me or how much I agree. I also have Stage 4 metastatic breast cancer. I have a chemo treatment tomorrow. People always ask me “For how long?” and I have to explain to them that ending treatment (even though it hurts me and makes me sick) would mean death. People can’t handle that. They want to wrap cancer up with a little bow. A happy ending.

    Living with a chronic condition is so different, and as a result of that I do feel isolated and I have pulled myself apart from the “YA cancer community”. I do not call myself a breast cancer “survivor” – I still have breast cancer.

    Thank you for saying this so well.

  5. Rae…If you ever just need to “vent” please feel free to contact me….I am in my 7th month of being diagnosed with Stage IV adenocarcinoma (non-smoker) lung cancer and the cancer has also spread to my lower vertebrae…. and they found a tumor on the occipital lobe of my skull. I just turned 55, my children are all grown and I have an amazing 7 year old grandson, Oliver. I am also divorced and live in my little vintage house with my three feline furries!! Anyway, I would love to have someone to talk with that actually understands this cancer journey…the ups and the downs….the good days and the days that I barely get through….the meds and all of the side effects and the treatments….Rae, you are in my thoughts and my prayers. I would love to hear from you! <3 from a fellow cancer warrior in Omaha!!

  6. Lori Packer says:

    Thank you for sharing that. I know how you feel. I too am still looking for a support group that does not just talk about the cancer they have. We need more than that. We need a place of some happiness and peace.

  7. Esan says:


    My mother had metastatic breast cancer for 13 years and recently passed away in April 2013. I can tell you that she has mentioned many of the things you have mentioned in this article. I think you should be commended for being so honest and vulnerable in explaining the things you are going through. Unfortunately a lot of people can’t seem to deal with the darker side of cancer like some of the things you mentioned in the article (i.e./ the reality of terminal cancer and how people just say “stay positive” etc…). i think dealing with cancer in general (whether you are the person who has it or the family member watching your loved one endure it) is very difficult. people often have a hard time coping with all the emotions that come with confronting something like terminal cancer dead on and it can come across as insensitive and uncaring. i think one of the greatest ways to show empathy and concern for someone who is dealing with terminal cancer is to acknowledge them and everything they have to feel/say and to not put their experience down. i also agree with what you said about the term survivor. i have often thought the same thing when it came to my mom. when people from cancer die they often say that that person “lost the battle” but when my mom died i knew that that was not the right way to describe her in any way shape or form. just because she died doesn’t mean she lost any battle. she was a warrior and a fighter and she fought to the very end. similarly survivor should encompass any patient who is and has fought the disease. being a survivor to me is more about the spirit of who that person is; it is another word for fighter for me.

  8. Pat Taylor says:

    Anna – Your voice is loud and clear! Bravo!
    I agree with you. I am so pleased to hear/read/see this part of the YA cancer storyline being brought out of the shadows into the light!

  9. Ann Branaugh-Phipps says:

    Anna, thank you for this well constructed portrayal of the emotions and perceptions experienced by those of us with stage IV cancer. I am also young (36) and living with metastatic breast cancer. I am also a mother (of three ranging in age from 3-6).
    I am in agreement with you regarding the term “survivor.” I am a “survivor” each day, and yet not in the sense that it is typically used in the breast cancer world. But then 1 out of 3 “survivors” may only think that they are so for a time. I think the word she be dropped, PERIOD. It is not applicable in either sense. It denotes having made it “out” of something alive. I won’t make it out- I’m buying time. That’s what we are all doing- whether or not we have cancer.
    I am also in agreement with your view of “positive thinking.” I get tired of hearing this from people. Of course I am positive- I want to see my children grow up! It occurs to me that whilst I was completely unaware that I even had breast cancer (and was thereby incapable of maintaining a negative attitude about it) these cells were traveling wildly through my body. You can’t get any more positive than blissful ignorance- and yet the cancer was running its course. I will concede that attitude can have a negative overall impact, however statements regarding “remaining positive” often seem to suggest that we can’t or aren’t beating this as a result of our lack of resolve.
    One of my most frustrating experiences occurred when I approached an “obvious” breast cancer patient (bald with a compression sleeve) and shared my stage IV status- with the intention of perhaps helping her to feel fortunate that she may have a “chance” to NOT BE ME. She replied “So, you’re just giving up?” Obviously she didn’t understand what metastatic meant- but the comment stung me painfully.

  10. Aimee Ladd says:

    I was happy to read this article. My daughter is only 13 and not a young adult but seems to feel much of what you are expressing here. She has a cancer called EHE or epithiloid hemangioendothelioma. It is sarcoma like in nature and very rare, particularly in children. We do not know her prognosis because it is so rare that little research has been done on it and there are currently no known empirically validated treatments. She is on an experimental medication that we hope may work. The hardest part of her diagnosis is the unknown. We ask many questions and often the answer is ” we just don’t know”. We are currently in a closed facebook group of other EHE patients world wide who are trying to create a registry of diagnosed patients and what is or is not working for treatment. So far we have 44 people worldwide who have registered. Anyhow, Thank you so much for sharing your thoughts. I am planning to have my daughter read this article, as she frequently feels so different from the other childhood cancer patients.

  11. Anna,
    Thank you for bringing light into a dark room. Informative and beautifully written.

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