Monday, December 22, 2014

Recipe for Living with Metastatic Cancer

Some of these ingredients may seem hard to find, especially if you are newly diagnosed. But with a little searching (and soul searching), you can create something wonderful to sustain yourself through the hard times.

  • First, you will need three heaping cups of support.
This support can come in a variety flavors, and many blend well together.

The first cup includes your close circle: spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much support can spoil the recipe, it helps to use a website like Lotsa Helping Hands, or an organized friend to coordinate your support.

The second cup is your cancer people. It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve as emotional and practical guides navigating these waters. Explore online groups and organizations as well as in-person support such as The Cancer Support Community, a national organization that provides online support as well as local chapters. Remember that there is also support for your caregiver and children, if you have them, in the form of caregiver support groups and child life specialists for young ones.

The third cup is money. Cancer is expensive, and even if you have good insurance, the co-pays plus the lost work can add up quickly. Consider allowing friends to do a local fundraiser or an online campaign. Many people with advanced cancer also qualify for Social Security Disability, so speak to your hospital social worker about this.

Remember, support is vital to having this recipe work out, so don't skimp on this ingredient because you are scared or ashamed to ask for help.

  • Next, throw in two large handfuls of courage.
Sometimes the courage comes in big chunks, enough to sustain you for weeks. Other times, it is granules that are just enough to keep you going one moment at a time.

It is the courage to ask questions of your doctor, the courage to advocate for yourself if you feel that you are not getting the care and response you need. It is the courage to admit that you need help. It is the courage to go for a second opinion. It is the courage to discuss end-of-life issues and wishes. It is the courage to tell those closest to you about what you are facing, your worries, your dreams and your nightmares. It takes courage to admit that you don't feel positive all the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to keep moving forward.

  • Melt and stir in a stick of knowledge, so that it spreads evenly throughout the mixture.
People vary on the amount of knowledge they like in here, but this ingredient enriches the whole experience.

When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the feeling of control that cancer tears away. Knowledge helps you know what expect, how to plan for what could go wrong, what the Plan B will be if/when this treatment stops working. With knowledge you can learn about clinical trials that may prove promising (even potentially lifesaving) for your particular case. You can find this knowledge from online cancer communities of others with your disease, from staying abreast of the latest research, from pressing your doctors for more information, and from talking to others professionals in the field.

  • Throw in a dash of denial.
Without just a touch of this, the flavors can sour.

Sometimes the intensity of a stage 4 diagnosis can be simply overwhelming. I have found that I can't spend all my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer exists, forget this thing living inside of me. So go ahead, splash in some denial – and if you're having one of those days, pour in the whole bottle. I won't tell.


  • Finally, cover the whole thing with a generous dusting of hope.
This final ingredient pulls the flavors together and makes it all palatable.

Never underestimate the power of hope. In the darkest times, it can provide a single ray of light that keeps you moving forward. It could be the hope that you make it into a clinical trial, or that this next treatment buys you some more time, or that you will make it to the next birthday, or that you might just be the outlier that blows the statistics out of the water.

~~~
Of course, there is no one recipe that works for everyone. These are the things that have helped me navigate the emotional minefield of this disease. What about you? What ingredients do you put in your mix?



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer

4 comments:

kimmywink said...

As someone who loves to cook and bake I really enjoyed reading this piece. Happy Holidays Tori!

Anonymous said...

Tori,

At different times, it's hard to come up with one particular ingredient. And speaking as a cook who only follows the recipe for a souffle (once a year) I always try to ad lib or substitute. Surely, I think, I can just sort of wing it. Hmmm.Once I made a chocolate cake with my young granddaughter and winged it. She wanted the chocolate mayo cake. Couldn't believe it would work. It didn't because I winged it and added too much mayo. So... we went to the recipe. Courage is what I lack now. Or maybe, more accurately, the ability to be in the moment. Mary

Tori Tomalia said...

Ha ha - as someone who is pretty bad at baking, this might be the only recipe I could make without burning something! I hope you had a great holiday!

Tori Tomalia said...

A chocolate mayo cake sounds ... interesting. I think our coping recipes have to shift and adjust over time. We are all trying to figure this out as we go along.