Well hello. It’s been a while. I have been busy living life with no chemo 🙂 We do finally have a plan and everything is good right now.
I have started a little project in my spare time and thought I would share a small peek at what I’m working on.
In January, I signed up for a free webinar about writing your memoir. I have been stuck in my writing for a long time and was looking for inspiration. The next day, I was driving and thinking about what I heard in the webinar. And just like that, the title of my memoir hit me.
If you have ever been in a conversation with me, you may have heard me use the phrase “What’s that word?” It is frustrating to be in the middle of a sentence and stop abruptly because I can’t form the next word.
Chemo Brain! Even as I age, I still refer to it as chemo brain because who wants to blame age, when they can blame chemo?
Below is a sample chapter I have been working on. I plan to start each chapter with a word (or phrase), the definition, and a quote with that word. Hopefully, it will be informative, helpful, funny, or maybe just a fun read.
Support Group – a group of people with common experiences and concerns who provide emotional and moral support for one another
“’Tis not enough to help the feeble up, but to support them after.” – William Shakespeare
Opinions. Everyone has one. Sometimes people ask for them. Other times they are forced upon us whether we want them or not. My favorite opinion is the unsolicited one (please hear the sarcasm as intended here).
Whether you want to hear it or not, eighty percent of people around you will share their opinion (that number is not based on science, but just my personal experience).
It may be as inconsequential as what color your next car could be, or if they like shoes you are wearing that day. Sometimes people say things and it comes across as a nice compliment. Such as “The shirt you are wearing really brings out the blue in your eyes. It is lovely on you.”
When that happens, you can smile and say thank you. You may even think about it later and get a little smile again just remembering it. It can turn your whole day into a positive outlook.
When you have a health issue, such as cancer, for some reason everyone is suddenly an expert and offers their opinion about everything. From who the best doctor is, to how you should change your diet, to the best non-toxic cleaning products. Or every non-western medicine, alternative medication/snake oil option out there. Once someone hears cancer, the Bat Signal must go up and everyone is sending you their “tried and true” cure. But that’s another chapter.
Within a few days of receiving my diagnosis, a friend (she was my daughter’s second-grade teacher and a lovely person – none of the following true story is a reflection on her) offered her opinion and suggested a Support Group. She gave me the information about a breast cancer support group hosted at her church. The church was close to my office and they met during the lunch hour.
Since this was someone I admired and thought highly of, I thought I would give it a try. The friend knew some of the women personally and thought it might help. Having had no experience with what a support group should look like, I blindly agreed to go.
Between the last surgery to have the port-a-cath placed and my first scheduled chemotherapy, I was finally back in the office and working. In good faith, I got in my car at lunch on the day of the support group meeting and drove to the church parking lot. As I sat there questioning myself, wondering if I really wanted to do this, I reminded myself I had agreed to give it a try. I got out of my car, opened the door to the church meeting room, and entered the room.
For someone who has always considered themselves an introvert (well, now I think of myself more as an ambivert), going to an unknown place, and meeting unknown people was considerably outside of my comfort zone.
As I expected, all eyes turned to me when I walked in the door. A hush came over the room as the person in charge came to greet me and make sure I was in the right place. After exchanging pleasantries, and ensuring me I was in the right place, she handed me a label to make a name tag. The low murmur of conversations started back up and the leader dragged me around to meet everyone before asking everyone to take a seat.
Just like in every movie or TV scene with a support group in it, there was a circle of chairs in the middle of the room. I let everyone take their preferred spot before sitting in one of the empty chairs. The woman who greeted me at the door had an official-looking clipboard and read the ground rules for participating.
According to the ground rules, no one had to participate if they didn’t want to. And man, did I not want to. I was content just sitting and listening to the others. After all, this was my very first experience with a support group and I wanted to see if it was something I wanted to participate in.
After reading off the checklist, she asked for a volunteer to go first. To this day, I can’t tell you the name of anyone I met that day. I’m pretty sure I have blocked most of it out of my memory. Something I never really want to relive. But here is the best synopsis I can offer.
Honestly, my head was still spinning from the past month’s activities: the mammogram with a suspicious lump, a surgeon who didn’t think it was anything to worry about, surgery to remove the lump, a follow-up surgery for clear margins and lymph node removal and testing, meeting an oncologist, another surgery to insert a port-a-cath so I could start receiving chemotherapy. And a scheduled first day of chemo on November 6. As I mentioned earlier, time speeds up when you have cancer. From the end of September to November 6 is a very short time when your life has been turned upside down.
Most of the women, or more likely all of the women except me, were on the “survivor” side of the coin. I was the only one who was new and about to begin treatment. And nine out of ten (another made-up number because I don’t remember how many women were there that day), were very pleasant and discussed issues they were having with side effects or upcoming appointments for a routine follow-up. I was just sitting there listening, with no intention to add to the discussion.
The spotlight fell on me. I didn’t want to speak, but the leader started asking questions and others joined in:
“When were you diagnosed?”
“Right side or left?”
“Do you have an oncologist?”
“Do you know the treatment plan?”
“Ductal or Lobular?”
“What stage?”
“Have you gotten a second opinion?”
The questions seemed to be coming at me rapid-fire. I’m sure I looked like one of those cartoon characters whose head was close to spinning off and their eyes were the size of quarters as they bounced around on springs. I looked left, right, every direction trying to keep up with the questions as they were asked.
“Early October”
“Right”
“Um, yes”
“Sort of. I think he said 8 treatments of chemo.”
Then shaking my head as I couldn’t keep up anymore.
I couldn’t remember if it was ductal or lobular, I didn’t know the stage. I felt so unprepared for the peppering of questions. I had hoped to just sit and listen and not participate. Yet here I was trying to answer questions. Some of them I remember later thinking I don’t even know what they are asking.
Unsure where to turn or who was going to ask the next question that I didn’t know the answer to, I tried to look at the lady with the clipboard. But before I could catch her eye, one very brash lady looked directly into my eyes. She was waiting for the answer to her question about a second opinion.
Weakly, I said “No. I haven’t”
Well, that wasn’t good enough for her. As the experienced breast cancer patient in the room, she knew exactly what needed to happen and I was going about it completely wrong.
It felt as if she came and stood directly over me (that probably didn’t happen, but it was 21 years ago). She said “On Tuesday I’m driving you to Dallas to get a second opinion from my oncologist. It sounds like you don’t have all the information you need.”
And yet to me, it sounded like she was going to kidnap me and drag me kicking and screaming to Dallas whether I wanted it or not. She felt entitled to give her opinion without asking if I wanted it or not.
My eyes must have been bulging out of their sockets. The woman in charge finally got Ms In Your Face to sit down and she closed the meeting.
When I tell you I couldn’t get out of that room fast enough… I looked at my watch and told the ladies thank you for letting me sit in, but I need to get back to work. And I ran to my car. I made it back to work somehow, and when my husband asked me about it later, I assured him I had given it a shot, but I was NEVER going back.
If that is what a support group is, then I want no part of one.
I found out the next week the woman usually in charge was not there that day. She called me after hearing from several of the innocent bystanders at the meeting what happened and apologized profusely. It seems she was the only one in the group who could keep Ms In Your Face under control and she had to take care of a family emergency that day. She asked me to come back to another meeting when she would be there. I politely refused. We had a very nice long chat and she understood why I would not be returning.
I did NOT, in fact, go to Dallas with the lady who thought she had the only “right” opinion about me and what I should do with my body.
According to Mr. Shakespeare, that group was supposed to lift me and then support me afterward. Instead, it took me 14 years to ever step foot in an organized support group again.
Let me know what you think! Are there any words that you think would be fun to include? Don’t worry, I have a long list to work on if you don’t have any suggestions.
