Thank you for your support for my crazy day yesterday. I appreciate the prayers, positive thoughts, email messages, texts, care for my children, and the many other ways that you helped me to get through the day.
The bottom line is no surprise: the tumors have grown, so I will go back on chemo starting either this Friday or on Tuesday. But that wasn’t the hard part.
In case you want a little window into the day, I’ll share this story with you.
My schedule looked like this:
10:15 blood draw
11:30 CT scan
2:00 Palliative care appointment (to deal with the pain)
4:00 Oncology appointment (to discuss CT scan results)
Of course, things don’t run exactly on time so I basically planned to spend the day at Dana Farber.
The blood draw and scan went fine, though they always leave me feeling a bit “off.” With this “off” feeling, I made my way to palliative care. Though I had a wonderful palliative care doctor at Mass General, this was my first time at Dana Farbar palliative care.
A nurse greeted me and it was apparent that she would be taking care of me, not a doctor. Okay.
Palliative care involves a lot of listening, so I assumed that she would need to get to know me first. I outlined some aspects that I felt were important, including the fact that I have a high pain threshold and avoid pain meds as much as possible. Only in the past week, I began taking two regular strength Tylenol at night for the pain, so that I could sleep. I outlined the thinking behind my strong emotional resistance to taking painkillers.
She asked me a lot of personal questions that she read from a sheet, which I figured were required, questions such as did I ever smoke, drink, smoke pot or do heroin.
Then she asked whether I had a health care proxy, where and under what circumstances I might like to die, when was the last time I discussed this with my health care proxy, and how were my children with all this. These questions felt a bit personal, especially given that I didn’t come here to discuss that and I didn’t have a relationship with her. I also wasn’t prepared to discuss them and she did nothing to pave the way into that conversation, so my head was spinning.
But she plowed forward, and I did nothing to stop her. Her next questions revolved around how I would feel when the doctor tells me that there are no more chemo options. What?
I explained that I try to take everything one step a time, and I assume that we will handle whatever comes up.
So she asked me again.
By now, I was feeling exhausted and small. Something about her way of being made me feel really beaten down. We eventually got around to discussing painkillers. I took the narcotic prescription she gave me and walked out.
I won’t fill the prescription, because I won’t be able to take those meds. First of all, I feel like there MUST be something between regular strength Tylenol and narcotics. But also, those pills will remind me of this conversation, which is not healing.
Thankfully, the meeting with my oncologist was more upbeat. Given that he was telling me that I had tumor growth and would be going back on chemo, that is saying something!
I hope your interactions are going well today. Thank you for always lifting me through your interactions. It truly keeps me going.
There is and has to be something between Tylenol and narcotics. What are they ? Sounds as though she had a script to follow and you have reminded me how important it is to listen and shut up when I think that my insight is what someone needs. XO. KT
KT, you are an incredible listener and you help others find their sense of humor. But thank you for your supportive words! xo
Oh, Marie. What a crappy day! Glad THAT one is behind you & how wise you were to push up CT scan. Let the nasty chemo work its weirdie chemical magic while you remember how much you are loved. 💞
Thank JPJ – you are so sweet and thanks for being in my corner!
What a crappy palliative nurse experience… I was cringing reading it and so upset you had to go through that meeting which didn’t focus on what **you** wanted to discuss based upon **your** needs and personality – it is amazing the wide range of care quality there is in each type of care specialty. Many palliative care nurses I have met or heard about are absolute angels to work with as a team. Hopefully you can ask friends in town for palliative practitioner recommendations, find one that “matches you” and never see that nurse ever again!
Hi Dr. M – you are right – there is such a wide range of care quality – but I’ve had such great providers that I forgot that! Two days later, I returned to my initial palliative care doctor and that was wonderful. Thanks! Oh, and when I saw my oncologist, he asked me about that appointment. I just said it wasn’t a match and when he learned who I saw, he laughed and said, “I would NEVER match the two of you up.” So I guess it was (bad) luck of the draw that day!
Palliative care is supposed to improve the quality of life not beat you down. It is to provide relief, not make you suffer–especially in their office! According to the WHO, palliative care provides “impeccable assessment and treatment of pain…” That couldn’t have been further from the truth in your case. She is clearly in the wrong job! Fortunately there are many, many more sensitive people in her role. How I wish we could all find the courage to BOLT out of the chair if we are in similar situations! A simple, “This isn’t working for me…..Goodbye.”
That would be a good response, Julie!
Dear Marie,What a horrible experience for you.I went through a similar experience with my
dear friend Chris and I nearly punched this so called pallative care giver out !!!
As far as I am concerned.great Compassion,Understanding and Listening to the patients
needs is what you should have received find someone with those essential qualities that
you need,and not someone who makes you feel there is no hope !I continue to pray for you to have the courage and strength to continue the battle ! With Love & Light Kim in SA
Kim in SA, your friend was so lucky to have you there! I went alone, thinking this appointment was no big deal. You can see the difference your support made! Take good care and love to you.
I liked your post not because I liked what happened to you but because the comments so closely matched what I was thinking. You’re fighting enough without having to fight for your emotional wellbeing because of an insensitive unhelpful nurse. Keep fighting for you.
Judy, thank you so very much! When I am feeling not-so-strong, it helps to lean on the strength in words like what you wrote. Thank you.
Thank you for sharing this glimpse of your day. I know you were feeling a lot and your head was spinning, as you said, but your ability to get this out so clearly is amazing.
My wish for you is that you can see that this had only to do with the nurse’s state/frame of mind and nothing to do with you, your health, or anything related to you. I wish you don’t let this sway you from what has been a successful course for you. Mentally turn yourself to the side and let her negativity flow by you. It is not for you.
breathe …. breathe …. breathe …. I’m breathing with you. We’re breathing with you. Strength. Love. Light. Healing. Balance
much love to you and your family
Tania, Thank you so much for your calm voice. Love to you.
Oh Marie. I feel tightness in my chest reading about how that nurse treated you! I’m sorry she didn’t take the time to get to know you or even get a sense of where you’re at before completing her checklist of must-know stuff.
So, how did she take it when you told her you not only did heroin but used to sell it? 😉
I love you.
>So, how did she take it when you told her you not only did heroin but used to sell it?
Hahaha, I thought only I knew Marie’s secret past! 🙂
Jaime and Tom, you guys are too much!
I’m so sorry that the “palliative care” part of the day was the worst part of an already bad day. My doctor-husband tells me there’s plenty between regular Tylenol and narcotics but your doctor-husband has surely already told you the same! I hope you are feeling better today. I’m sending love and positive prayers. xoxoxo, Eve
Thanks for the support and info, Eve! My doctor-husband walks a funny line between supporting me and giving me medical advice that I might not want to hear, so it is ALWAYS good for me to hear from someone else!
As always, Thanks for sharing. I hope it’s healing to get the story of this ‘bad nurse’ off your chest. As I was reading, it struck me that there was a fundamental disconnect: you expected to have a conversation about pain relief, and it sounds like the nurse thought you were there for a hospice intake meeting. What shame that she didn’t pick up on your non-verbal cues, apologize, and quickly reset the conversation.
I guess that nurse was away on the day Karen Rancourt gave her Active Listening class at Index! 😉
Jon, you so clearly articulated the fundamental disconnect! Yes! 🙂 Thank you.
Oh, and….when I was at MGH, they convinced me that palliative care was not “end of life” care and I agreed to see, and loved, the palliative care doctor there. But someone (in response to what I wrote here) told me that at Dana Farber, they are more accustomed to dealing with patients who have run out of chemo options, not working with them the way I was trying to. So you hit the nail on the head!
The palliative care nurse sounds like she was focusing only on what information she needed and was paying no attention to what you needed. Time to ask for someone different. She put you in the position of a small child so you weren’t able to stick up for yourself and say you didn’t want to talk about all this. You wanted pain killers! There are pain management clinics that focus only on controlling pain. I would suggest that you seek out one of those. They focus on making people comfortable living with pain.
Ginny, I did feel like a small child when I walked out of there with this prescription in my hand. That was exactly it.
I’m so sorry you’ve been in so much pain. Argh. I’m reminded of the saying: “Share another’s pain to make it half the pain; share another’s joy to make it twice the joy.” I wish we could all somehow take on your pain to dissipate it because you have buoyed us up so often with your joyous views on life and living! I hope that sharing your pain in writing may lessen the psychological effects of it, but please know that you can always call on your local friends to help you through the not-so-pretty painful parts, too. I, for one, would gladly come right over and sit with you on the bathroom floor at 2 AM or meet you at the hospital to cut short an unhelpful nurse! “Udabest” (as someone just texted me recently!) and I love you. I hope you can feel the love and support of your friends far and near during times of pain. xox Susie
Oh thank you Susie! You are already up at 2 AM with me on emails ha ha! But thank you for being willing to let me share my pain and thus make it less and more bearable. xoxo
Sad to think that this nurse was seeming to be in the wrong place and not very passionate about the interactions her job would bring her. Nursing is one of those vocations that you have to approach as a vocation or it would be a miserable existence.