Paul's Heart

A Lesson For Oncologists From Jessica

As a 25 year survivor of cancer, I have grown accustomed to the fact, that the majority of medicine still has no idea how to treat those of us who are dealing with late developing side effects from treatments for cancer.  After all, the benchmark is “five years”, so medicine and science, never really studied what could happen to the average cancer patient if they lived longer than those five years.  Well, there are over 12 million of us, and if we are lucky, maybe 1% of us get the care we need, from exceptional cancer facilities who finally saw the need to take care of those of us, who have lived long enough to develop issues that no one had any idea that could happen.

The studying of long term cancer side effects is relatively new, but what is not new, is that follow up care is more closely followed for newer survivors, and for the rest of their lives.  But as one new cancer survivor points out, there is still one major area that many oncologists are still failing cancer patients.

I would like to introduce you to Jessica, a 25 year old mother of two.  She has a fiancé who together own their own ice cream parlor in mid-Pennsylvania.  A little over a year into the ownership, Jessica was diagnosed with Hodgkin’s Lymphoma and treated with chemotherapy and radiation.  She finished her treatments a couple of months ago, and this past week, she received great news that all cancer patients want to hear, her first post treatment scan was clear.  Her Hodgkin’s was gone.  While that news was great, something was troubling Jessica, and she wrote an “open letter” to her oncologist.  But to be honest, this letter could very well speak for nearly all cancer patients.

Jessica has given me permission to post her story on “Paul’s Heart” in hopes that more people are inspired to bring such an important discussion to oncologists.  It is not good enough to treat us.  You have to prepare us for the life that is ahead as a cancer survivor.

The link to Jessica’s blog is :  http://jesskmcd.tumblr.com/post/127243498326/an-open-letter-to-my-oncologistthat-he-will

Here is Jessica’s letter:

“An Open Letter To My Oncologist…That He Will Never See”

Dear Oncologist,
Thank you for saving my life. Seriously I mean it. 👌🏻 but I do need you too know…in many ways I feel like you have failed me.
1. Remember those pain meds your perscribed…100 at a time…for months…the ones that make you feel all warm and fuzzy and happy even though your dying? I don’t get those anymore. Now I am left to deal with my real thoughts and feelings without that warm & fuzzy filter. You never should have just handed those out…no warnings or anything. Thankfully as a mother I knew better than to get to far in. Don’t worry I didn’t get addicted, thanks for asking.
2. You never told me about PTSD. You never told me how irrationally angry I would get at the world. You never warned me that the post treatment fight with yourself can be scarier than the one against cancer. You should have told me, because I have learned through others like me that this is common. If you didn’t know this was a “side effect” of cancer treatment than you should quit your job, because every single cancer patient goes through this in one way or another.
3. Speaking of post treatment treatment, thank you for suddenly making me wait weeks for test results, not returning phone calls, and general lack of compassion. I may not be DYING anymore, but I don’t know that. I don’t trust that. I still feel like I am dying. Every day I see friends I have come to know and love who also battled along side me who relapse. Every hiccup, every little pain, I assume my cancer is back. Again…PTSD. I understand you have a lot of patients to take care of…who are dying. But I am still a patient. I have more than just physical needs. Maybe your department should hire a nurse or doctor for “post treatment care”. I understand that’s probably not in your budget. I just feel as though I have relied on you and your nurses for months, trusting you to keep me alive and then the second treatment ends…it all ends. No one cares anymore. It’s a hard realization to deal with. We go from everyone praying for us, getting special treatment & attention to “the girl that had cancer”. I understand the end of the pity parties, but as my oncologist I still NEED you to have some compassion for me.
4. Two mins of your time isn’t enough. I don’t like having to feel like I am holding you up when you try to shake my hand and leave, and I jump up and say wait! I have questions! I feel like an inconvenience. It’s not a nice feeling. I have learned through treatment your not warm and fuzzy. Luckily your nurses are because I needed that. But I think with a 24 yr old mother who has cancer, you need to be slightly more understanding. Then again I don’t even know if you know I have children.

Thanks for being awesome.

-That one cancer survivor