Linking you to resources and support in the lung cancer community!
I know that people who are in or have gone through treatment for lung cancer can experience pain issues due to all types of treatment. Have you had cancer-related pain? Did you talk to your doctor about it? How did your doctor address your pain and do you think he/she addressed it well enough?
Looking forward to hearing from you about your experiences. I'm curious because I am going to a meeting next week on pain management and how doctors approach it and I want to be sure I can accurately represent the lung cancer experience.
Thanks for the thoughts, David. It means alot. It was truely awful to go through and by no means does this apply to all nurses. Her hospice nurses were angels that helped us peacefully shephard her Home. I know she has recieved her perfect healing and is with Christ in paradise. I just want to bring a little light to the issue, alerting doctors to the possible issue and possibly encouraging them to change the way the meds are prescribed in-patient. After sharing my story about our family's experience, so many people came to me sharing they went through the same thing but did not know how to speak up or change things. Our loved ones deserve adequate care and dignity even when their prognosis are not good.
Hi Amy, I appreciate all that you are doing to bring awareness to the medical profession in regards to pain and lung cancer treatment. I was kept pretty comfortable after my two surgeries while in the hospital as far as pain goes. It wasn't until afterwards that some discomfort arose, and because I am allergic to some opiates getting the pain under control seemed somewhat challenging. My doctors did what they could to aid in alleviating my pain. I was fortunate to have a doctor who listened and cared.
I've had a variety of issues/experiences with pain meds, and have been on them 24/7 for the last 19-20 months. The very first terribly painful episode I experienced was the first thorocentisis I was given on the first day I went to the ER (to drain my lung of pleural fluid, which was found to be cancerous), on day one of what would ultimately lead to my cancer diagnosis. The pain from this procedure was awful as well, and they didn't give me strong enough pain meds for this, at all. In fact, they ended up collapsing my lung and that was horrific pain for over a week. This was the very first experience I had with any pain, prior to the bone metastisis pain in my back, starting a few weeks later. I can remember the technicians telling me I should feel better, and they kept repeating it, despite my pain growing in intensity by the second.
The pain since then has come almost exclusively from the metastisis to the bones in my back. The pain started within weeks of my diagnosis. and progressed quickly. I went through 4 or 5 different meds, trying to get the pain under control. In the meantime though, I was actually admitted thru the ER because I passed out, in part, due to intense pain after the first round of chemo! It was awful. From my recollection, the hospital staff (Univ. MI) was very diligent about bringing me my pain meds on a timely basis. I remember also mentioning it to one of the nurses, but never got any negative responses. I had a second hospitalization about 10 days later, and had no issues getting my meds on time.
The one issue I did have exceptional difficulty with was when I was going through Chemo and was being given Neulasta shots to help boost my immune system/white blood cell count. I had terrible reactions to the increase in bone pain that I experienced during all four rounds of chemo, and absolutely was NOT given enough pain meds to get through the 5 days or so of excruitiating pain during each round. In fact, I never even knew until months after treatment that this can be a common side effect. Unfortunately it was addressed improperly, but thankfully, the pain also went away when the chemo treatments were done.
I have had varying support in terms of pain management too, depending on who treated me since I've been at three different hospital systems along my journey. The UM group was good overall, and I also know they are very good at managing pediatric oncology pain (family member was a nurse there for 15 years and she was shocked at how different my own experience was as an adult, compared to the "kids" she treated). Another of the large teaching hospital systems I've been a patient at in GA was awful, and didn't want to deal with it at all, nor any other drugs often needed for cancer side affects. They kept shoving me off to a variety of different doctors, even though they are supposed to be a comprehensive cancer treatment center. NOT!!
One of my current Oncologists has never given me any grief about my pain med's now that I am at a maintenance level, but I also wasn't involved with him at the beginning of many month's of trying to get the pain under control.
Something that I would LOVE to have brought up at your conference next week is the role that other activities can play in terms of pain management. By that I mean complementary/integrative activities such as Yoga, Pilates, Tai Chi Qi gong, Meditation, etc. The difference in my levels of pain has been dramatically lowered since beginning these activities. Unfortunately many physicians poo poo the contribution these types of classes can make, even if their hospitals are affiliated with internal departments or external wellness centers or CSC/Wellness Community locations that support them!