On the surface this blog may appear to have little or nothing to do with organ transplants but it is very relevant. Over one hundred thousand people in the U.S. are waiting for organs, all of them wondering what tomorrow holds and even — if there will be a tomorrow. I was in that position and I know the feeling.
I first published this post on my world wide issues blog http://blogsbybob.wordpress.com , It so moved me and has received such an incredible response that I thought it was important to share it here as well. What you are about to read was written by cancer patient Marcie Williams. While Marcie is not waiting for a transplant I know we can all learn from her experience. She wrote what follows in the hope that others will benefit. If you want to know more about Marcie or contact her go to:
I am not brave. I have cancer.
By Marcie Williams
One day you’re teaching, the next day you have cancer. Do you tell your supervisor or students? You’re the director of an ESL program and your employee gets cancer. What should you say? What if your colleague is diagnosed with cancer? What do you do? The aim of this article is to answer these questions and others.
I am a cancer veteran. Veteran you say? Yes veteran. I’m not a fan of the word survivor because it doesn’t sufficiently describe the battle to beat cancer. Plus, I think survivor is stigmatizing in that it makes me forever known as the girl with cancer. I am more than that so I prefer veteran. In October 2005, I was a 30 year old ESL instructor. I lived in New York City and had a cool loft that, like most New Yorkers, I shared with five people to pay the rent. Then I discovered a lump. After hoping it would disappear, I went to the doctor. I had a mammogram, a biopsy, a core biopsy, and finally in January 2006 a mastectomy. This was followed by chemotherapy, radiation, and physical therapy for lymphedema. In May of 2007, I moved to Columbus.
What I learned while going through my cancer battle was that if you are a cancer patient, support groups are plentiful and cover most aspects of your treatment. On the other hand, these groups do not provide support for my colleagues and coworkers. Many of them had no idea what to say to me and I also learned that many administrators were also unsure what to do or say once they learned of my illness. It occurred to me that I could help by offering suggestions.
The suggestions I have written below can be divided into three sections – for everyone, for cancer patients and for supervisors. These suggestions are based on my own experiences, the experiences of other cancer veterans, and what I have read in various cancer books and blogs. It is my hope that the article below will help you if you are either fighting the cancer battle or helping someone fight it.
If your friend or coworker has cancer, don’t ignore it. This is one of the biggest blunders you can make. Also, it does not matter if you think chemotherapy is toxic poison, try not to disagree with or criticize her treatment plan or give her suggestions for alternative medicines. It puts her in a defensive position. This is a time when she needs support not a time when she needs to justify her actions.
People also tried to compare their illnesses with my cancer. I realize they were trying to relate to me and doing the best they could, but having pneumonia does not equal having cancer. People also tried to relate and help me by giving unsolicited advice and information. I had women come up, tell me they too had cancer and then go into the horrors of chemo, surgery etc. Some information was so scary I actually started to cry. Other times I just stared in shock. If you have information to share, it is my advice to tell the patient you have information that, when they are ready, you will share.
I think people are at a loss of what to say when they learn you have cancer. They say what they think is best. People want to be supportive and helpful but some things just sound wrong. For example, when people told me to be positive or be strong, it added a lot of pressure to be constantly cheerful. People would say ‘you’re very brave” and I always thought “no, not really”. Brave is a firefighter who rescues a child from a burning building. I am just doing what I have to so I don’t die.
Things you can do -
Ask questions, then listen
Give cards, gifts, visits
Tell us you have experiences with cancer – ask us if we are ready to hear what you know, then tell us
Do favors. Don’t ask, just do it.
Follow our lead – if we want to talk, then listen
Be there – ask us to lunch or dinner
Be normal – if we are out of the office, keep us in the loop and yes, by that I do mean gossip
Say things like:
You look great
I’m sending you prayers, karma, awesome thoughts
How are you today?
You are amazing
That is terrible
Things NOT to say –
If you need anything, call me.
Don’t put us in a position to ask, just help
God won’t give you more than you can handle
This always made me think ‘so if I were weak, I wouldn’t have gotten cancer?’
My aunt/friend/sister died of that or my friend beat it and then had a recurrence
Please DO NOT tell me cancer stories with a bad ending
Is it treatable? This always disturbed me because I just didn’t know. It was almost as if I should say ‘we have to wait and see if I die or not before I know if it’s treatable’
My whole family had it so I will get it too
Maybe but you don’t have it right now and you may not get it. This is not about you
That’s the most curable kind of cancer
This diminishes what the patient is going through
At least it isn’t brain cancer
Again, don’t diminish what the patient has
As a patient there are many work related issues to consider. Telling people you have cancer is a personal decision but I advocate telling both colleagues and students. Some of the reasons I told my colleagues were to prevent negative feelings, get help and promote understanding. I was afraid I would miss work or need extra help to perform my work duties and if they didn’t know the real reason, they would become resentful.
I told, and still tell, students I had cancer. I do this to help them. I learned that reactions to cancer vary in different countries and the reactions to ‘female’ cancers can be quite negative. For example, in Middle Eastern countries, cancer is shameful, too embarrassing, taboo and frightening to mention. Sometimes women aren’t allowed mammograms or other treatments because they would be administered by male doctors. In the UAE, cancer is the biggest killer of women because stigma prevents early detection. Many countries do not promote regular mammograms. If I can change these perceptions, encourage mammograms, or help any student. I will tell my story.
If you choose to tell people, you should consider some of the following. Do you do it face to face or appoint someone to tell people for you? I had my sister tell my friends. After telling a few, and finding myself comforting them, I couldn’t do it anymore. You should also keep in mind that many people are squeamish, so consider how much detail you give. Gender plays a huge role in how you tell people as well. For me, it is uncomfortable to tell men and my male students I had breast cancer. It is also uncomfortable for them. If they ask what kind of cancer I had, I might look down, point, or depending on my mood, I tell.
If you decide to tell people, keep in mind their reactions. People mean well but oftentimes are wildly inappropriate. Keep that in mind and try to remain calm. I also try to alleviate their discomfort.
After you are diagnosed, it is important to keep some other work-related items in mind. Try to plan your doctor’s appointments at convenient times. This is not only for yourself, but for your supervisors as well. It is also important to communicate your schedule with your supervisors. If you have to miss work for an appointment, I recommend keeping a log. Some companies allow you to make up the time instead of taking vacation or sick days and it is important to record your absences.
Supervisors also have a key role in cancer patients’ work. Things that you as a supervisor can do include planning for every contingency. Patient’s reactions to cancer treatments are unpredictable so it is essential for supervisors to have a back-up plan. This requires flexibility and skillful budget handling. It is also important to communicate with your employee. The more information you have about the employee’s appointments, the more you can plan. If you need to know something, ask your employee. It takes the burden off the employee to remember and explain everything at a time when she is thinking about her own mortality. Oftentimes, supervisors try to reduce the patient’s workload. On the one hand, this is a lovely gesture, but on the other hand it runs the risk of scaring the patient. They might think you are doing this to slowly fire them, or it could make them feel useless. So don’t assume the person cannot do the job; ask them directly.
To conclude, I hope this has provided a bit of insight into the mindset of a cancer patient and given you some suggestions for what to say or do as a patient, supervisor or colleague. Before I finish, I’d like to share the best piece of advice I received while going through chemotherapy. A co-worker – also a cancer veteran – told me that while I was ill, it was my time. It was ok to think about myself; to be a little selfish or, for that matter, a lot selfish. This was a hugely liberating piece of advice and I think everyone can learn from it. If you are ill, it is your time. If your employee or coworker has cancer – it is her time. She needs everyone’s time, support, and understanding to beat the disease. Good luck to everyone.
I’m sure transplant patients can find paralells between Marcie’s experience and theirs. Her tips, hints and suggestions are very germane and should be taken to heart by all who read this.
Please comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be a donor you may have saved or affected over 50 lives.
Editors note: Unfortunately Marcie passed away a few months after writing this message but not before she travelled remote parts of the world and continued to boost the spirits of all upon which she came in contact. Marcie may be gone but her courage and upbeat spirit will live on and serve as a great motivator for the rest of us. May she rest in peace and offer her warmth and smile from above.
Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com. Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at http://tinyurl.com/225cfh OR — my Facebook home page http://www.facebook.com/home.php