We were sitting in the oncologist’s office waiting for my dad’s doctor.
We were about a year into our cancer journey and had been passing tests with flying colors. When he came in I started the conversation about blood levels and medicine and some other super important thing (that totally didn’t matter 5 minutes later).
Dr. Veach however, gently told me that he wanted to talk about the scans my dad had just had.
I stared at him, completely confused. “Was there something on the scans?” I asked.
That’s when he gave us the news. The cancer was spreading.
I don’t actually know what happened after that.
This was my first time losing my mind in a doctor’s office. I didn’t hear anything he said.
- I burst into tears (I’m talking completely hysterical).
I could barely breathe.
I couldn’t calm down.
I just lost it. It was horrible.
And my dad, who had lost all of his hearing by that point, had no idea what was happening.
Can you imagine how awful that must have been for him? Standing there while your daughter who is supposed to be “the rock” of the family erupts into total hysterics.
Not my finest moment.
In fact, that was a truly awful day that I’ll never forget. I didn’t hear anything the doctor said, I missed all of the important information for the plan of attack, next steps, etc.
And when I left there, the only thing I actually heard because the doctor wrote it down on a sticky note and put it in my hand, was Immunotherapy.
I was distraught. It felt like in that moment that Immunotherapy was just a last-ditch effort.
You know, we have done everything we can do, but we can try this as a last resort.
It was an incredibly hopeless feeling.
But I can tell you for sure that I learned a lot about what to do differently next time on this horrible day (well actually once I stopped crying, so I really learned a lot the next day once I was able to get myself together).
THANK GOD, we tried Immunotherapy. That not only worked for him (without all of the nasty side effects that chemo had) it also gave my dad a lot of extra time.
I mean a ton of extra time.
And I learned that I definitely needed to prepare for these kinds of conversations in the future so I wouldn’t be blind-sided again. The truth is YOU CAN’T prepare for any of this, but there are things you can do to make these appointments easier.
Better Ways to Prepare
Don’t Forget to Breathe
I wish I could remember in the moments when the panic is coursing through my whole body… to close my eyes and take a deep breath.
I feel like making that one little action common practice would help me immensely!
Deep breathing is a very important skill to learn because it gives you a 2-second time frame to pause and just enough of a “break” to recalculate.
A huge (and unfortunate part) of an oncologist’s job is to discuss people’s worst fears and deliver life-altering news, so they will totally understand if you need a minute (or 10!) to collect yourself.
To close your eyes and take a deep breath and just concentrate on breathing.
Take that minute to breathe and collect yourself as much as you can.
It’s makes a big difference.
Find Some Perspective
Cancer is a devastating diagnosis, especially when you have a more difficult cancer. It helps deal with bad news when you can focus on what’s really happening.
I’m not saying the situation is good, but you have survived a thousand challenges in your life, and this is just one more being thrown at you.
While doctors can give you general patient outcomes, estimated time frames for how much time your loved one has left, or statistics for their chances of beating this based on the history of other people…
God is the only one who knows what is actually going to happen here.
The doctors can make an educated guess, but it should not be taken as gospel.
My dad was given “days to weeks” as a life expectancy in the beginning and we fought a battle would be proud of for 21 months.
HE made the decision to stop treatment after some pretty serious complications arose, so there is no telling how much longer we would have been able to keep going.
Regardless, it was a lot longer than “expected.”
Don’t panic and don’t give up because no one, except God can actually know what’s going to happen here.
Get The Information You Need Organized Beforehand
When cancer is involved there is literally a TON of information flying at you from every direction. Important communication, directions and emergency information that you’ll need to access quickly.
This is life-altering stuff, so you need the correct information and you need it fast.
Within the first few weeks of my dad’s diagnosis, we had STACKS of paperwork to go through any time we were looking for something we needed. We learned that organization is an essential skill for cancer.
So of course, we lost a disk that we needed to schedule our first appointment at Memorial Sloan Kettering in the mess (I know, shocking!?!). After we spent hours searching for the disk and then a few days to have it replaced and get it to Sloan, we decided we needed a better system.
This is the quickest and easiest system to organize medical information…
- NO more scrambling around looking through stacks of papers.
- Forget spending hours trying to find that one page.
- NO more lost instructions that you desperately need right now.
The Cancer Binder Pack can help you get organized in less than an hour and stay that way in a matter of minutes. As we were learning how to deal with bad news, we were also learning how to get our sh@t together!
This easy-to-follow system will save you hours of scrambling around searching for paperwork.
And we will walk you through the whole system step-by-step so you can do it yourself.
The Cancer Binder Pack includes…
So, you can avoid the anxiety that comes from not being able to find what you’re looking for, and save that stress for something much more important.
Bring Someone Else Who Can Listen
It’s almost impossible for you to hear anything important after a bomb has dropped into the room.
“The cancer is spreading”, “treatment is not working”, “emergency blood levels”… Cancer is a scary diagnosis.
I am an excellent caregiver, but I can remember doctor’s visit (like the above scenario) where I swear, my anxiety was off the charts and I totally shut down and didn’t hear anything at all.
Bringing in family members or a close friend who can help with this is another good strategy for dealing with bad news.
Cancer involves life-altering discussions that are amplified by panic and fear and are so stressful (and emotionally charged) that your ability to actively listen pretty much flies out the window.
And it is SO important that you have the right information, treatment options, and next steps.
Bring someone you trust with less anxiety about the situation to listen. Someone who is involved but not as close to the situation as you are to help you get the information you need.
Someone who can…
- Provide an extra set of ears.
- Take notes.
- Ask questions.
- Clarify information.
Having another set of ears at any appointment (because you never actually know when the bad news is coming) is just one more protective measure you can put into place to make sure that your loved one is getting the best possible treatment.
As a bonus, they can provide the emotional support you’ll likely need if you’re having a difficult time.
Don’t Make ANY Major Decisions Until You Have All the Facts
This is a terrible time for ANYONE to make any major decisions because you’re running solely on emotional reactions and adrenaline. This is a good time to just breathe and get through the moment.
We had an awful situation where my dad decided to stop treatment (and I cried for a week) after one of these difficult conversations. You can read the full story here, but the bottom line is we completely jumped the gun!
Until you have had a long and thorough discussion with clear simple language (where you are focused and listening) with the doctor about…
- The current status
- Treatment and options
- Additional consultations
- Quality of life issues
- A plan
Then you should not make any permanent decisions. What you should do is, focus on how to deal with bad news and…
Make A Follow-up Appointment As Soon As Possible
Schedule a time to meet with the doctor when everything is not as emotionally charged as it is right now. This way, decisions can be made with all of the facts and a much clearer head.
It will give you time to process everything (you did manage to hear) and put you in a better place to discuss and process where things are at right now…
This appointment will be the time to ask and clarify any questions such as…
- What is the best course of action?
- How optimistic are you that this is going to work?
- What does this look like 6 months from now?
- A year from now?
- What are the next steps?
- Are there any clinical trials that we would be a candidate for?
- What is the recommended plan?
Get a Second Opinion
This is a good idea if you haven’t had one already. If this is an initial diagnosis, if you’re not sure about the right course of action, where you’re at with medical care, or if you have any hesitation AT ALL about the treatment you’re receiving…
Get a second opinion.
Cancer is not like other diagnoses. When things get out of control with cancer, it’s really hard (if not impossible) to get it back.
So, you want to hit this thing head on so you can have the best shot at keeping it contained.
And doctor-patient relationship shouldn’t always enter into it. I’ve met doctors that I LOVE, but not for this.
Always hope for the best and celebrate any good news no matter how small. But you should also prepare for the worst-case scenarios as best you can. There is no right way or wrong way for how to deal with difficult news, but working through the steps above will give you the best shot at working through one of those horrific conversations as best you can.
P.S. Overwhelmed by all this cancer business?
The Cancer Binder Pack will walk you through the quick and easy system we use for organizing medical information.
Step-by-step instructions, printable forms, and monthly calendar pages so you can always find what you need when you need it.
And, the best part it’s FREE…
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