Difficult communicating with cancer patients?

I’d recommend one just communicate to the cancer patient that they are there to support in any way possible. That usually opens up the patient and natural communication follows.

When I was diagnosed with pancreatic cancer, the first thing I never wanted to hear out of the mouth of someone I told was the words “I’m sorry”. I mention this to medical students I monitor as well as to people confronted with learning a friend or family member has received a diagnosis of cancer. It is bad enough and when saying “I’m sorry”, it is often construed as the person is being written off. It never instilled hope or inspiration in me as well as many others I’ve discussed this with.

Here is what I suggest to people being confronted with what to say. Keep in mind that cancers are treatable and that includes pancreatic cancer-even the most aggressive form of it. Significant advancements have been made in the last decade doubling survivorship and this is my opening remarks. Next I will ask where the patient is being treated, how they found and decided to go to that institution. I’ll ask about their treatments, how it is going, how often they go, what care team members are they involved with, does the facility have a support group specific to pancreatic cancer and then if there is anything I can do to help such as driving them to appointments or needed help at home.

As someone who has survived stage IV disease, I had heightened awareness many people feel uncomfortable talking about cancer. I had enough worries in trying to survive without someone uttering the words “I’m sorry”. Thankfully my friends and family were smart enough to never say that too me and instead gave encouragement, hope and inspiration.

What I did was start the conversation and let people know I was comfortable talking about it. This put them more at ease in having a conversation. For friends, family and acquaintances of someone with pancreatic cancer, it is helpful to become knowledgable in the subject matter. Lots of research and treatment techniques are being published and two very good sources of this information is #PanCan.org and #LetsWinPC.org

So when encountered someone with a diagnosis of cancer, before saying anything, think what can I say to give encouragement, hope and inspiration. And by reading information on the sites listed, you might find some late breaking research or clinical trial results that fulfills one of those attributes.

I got diagnosed with stage 4 PDAC in May this year.

I didn’t tell my wider group of friends or colleagues for a while and then just started letting people know as I needed to resign from some activities I was involved in.

It soon became annoying that friends and family would message me every morning with “how are you feeling” messages and this became tedious responding to everyone.

My solution, which has worked well, was to set up a friends WhatsApp group where I posted each chemo day. Given I had 5 hrs each time lying in the chair, I had plenty of time!

The rules of the group, which breaks down occasionally, is no one is allowed to respond to the whole group directly. If they want to write to me they should do so directly. There are about 60 people in the group, so if everyone posts each time, it is annoying for everyone having the ping sound go off every few minutes as someone wants to say something.

Friends now just want to know how I am going and to say positive and supportive things. Which is nice.

I didn’t mind people asking how I was doing last year when I was diagnosed at stage 2 as I felt very hopeful of survival. This year (even after surgery and 5FU chemo) I’m a stage 4 and I don’t want people asking how I’m doing, but I do appreciate my former coworkers who want to go out to lunch with me because 95% of the time we are talking shop about the old days of work and not about cancer. The one question that some relatives have asked both last year and this year is what’s your prognosis. I tell them I don’t answer that question, but what I really want to say is how rude or mind your own GD business. I also love it when people tell me they are praying for me- it’s gotta help!