Hypochondriac or engaged patient? Can you tell the difference?
There are times when I am made to feel like a hypochondriac – those seem to be the times that one of the nurses at my oncologists office dismisses my latest concern as “not a problem”. It means that the next time something comes up, I find that I ask myself whether or not it is something I should be reporting to them. I doubt myself. Then I remind myself that I’m an engaged patient and that I should advocate for myself. If something is wrong, or I think there is something wrong, then I need to push to get it seen to.
It all started on the flight to Ottawa (Wednesday, May 13) – the very beginning of my trip to Ottawa. My shoulder was bothering me on the plane. Then I felt a lump. Yup, a real lump. I could feel it along the top of my shoulder. When I got to the hotel, I pulled of my shirt and I could visibly see the lump. I felt it. No pain, moves around a little under the skin. Logical me said it was nothing, but emotion me was scared.
I waited until Monday before I sent a message off to my oncologist explaining that I was travelling but that I had found this lump. I described it in detail.
I got a response from the nurse practitioner that she had noticed it when she examined me the previous week. It was nothing to worry about, and if it was still a concern in 4-5 weeks to follow up. The thing is, I know it wasn’t there before. I would have noticed if it was. If it was there when she examined me, there would have at least been a conversation around it. It wasn’t there before! But alas, there was nothing I could do while I was on my trip. I put it aside, hovering at the back of my mind, and continued on with visits to my many friends in Ottawa.
I travelled to Vancouver on Wednesday. On Friday, I noticed a sudden increase in floaters in my right eye. I had had my eyes checked only the week before my trip, so everything was mostly fine. My right eye has a secondary cataract, which needs a YAG laser procedure. I’ve already done the procedure on the left side, so it wasn’t something that was worrying me. After getting home, I sent a message to my ophthalmologist asking about the increase in floaters as well as the possibility of moving up the YAG surgery. I thought the secondary cataract, which is already affecting vision in my right, was likely the cause of the floaters. She was concerned, and recommended that I see the on-call optometrist Tuesday (Monday was a holiday here).
Tuesday began with a physiotherapy appointment. There I confirmed that the lump on my should was not present before I left for Ottawa. I had seen my physiotherapist the day before going to Ottawa, so I knew that if there had been a lump it would have been in her records. She confirmed that it wasn’t in my records, but also that it was nothing to worry about. She has seen breast cancer recurrences. This was not something she was worried about. It was “likely fat” or lipoma, but she made the same caveat any non-doctor makes, if I’m worried I should check with my oncologist.
After the physio appointment, I saw the optometrist, who after dilating my pupils validated that I didn’t have any tearing or issues with my retinas. My eyes looked good. I should consider the current set of floaters as my “new normal”, and if anything changes I should come back. Otherwise, I was good to go. This meant that the YAG surgery could be moved up – it is now scheduled for June 15th.
I then went home and phoned my oncologist’s office. I spoke to the nurse, who again said that the nurse practitioner said it wasn’t an issue. I explained that I was certain that the lump wasn’t there before and that I really wanted someone, anyone, to look at it. I wanted to have it confirmed that it was nothing before going on vacation for two weeks. I didn’t want to spend another two weeks catastrophizing and convincing myself that I’d had a recurrence. She suggested maybe I could have my primary care doctor look at it. I said, no, I want someone from oncology to look at it. I suggested maybe someone on the surgery side of things. With that suggestion, both she and I sent messages off to my surgeon. Within 5 minutes, I had a call from my surgeon’s physician assistant. Rather than treating me like a hypochondriac, she asked when I wanted to come in. I explained that I had sleep clinic that night but could come in first thing Wednesday morning. So, we decided on an 8:30am appointment. I felt so much better just knowing that someone was going to look at it, and take me seriously.
Last night, I got hooked up to a bunch of machines and slept at Stanford. I don’t have the final results yet, I’m told I’ll get them in the mail. What I do know is that I did not have sleep apnea bad enough to warrant them waking me up and testing out the CPAP machines. That is a huge sigh of relief.
After the sleep clinic, I saw my breast surgeon’s PA. She looked at the lump and confirmed it was just a lipoma. It was nothing for me to worry about. However, she ordered an ultrasound which should be done sometime before my next appointment with the surgeon (end of July).
So, in the last 48-hours, it as been confirmed that I DO NOT have: (1) retinal detachment, (2) sleep apnea, or (3) a cancer recurrence.
I’m glad to report that although I’m exhausted from all the worrying, and running around to various appointments, I am in good health. I’m so ready for a vacation!
After all this, I went for a walk with a friend. We were blessed to see two jack-rabbits in the nature area just up our street. She commented that they reminded her of the book:
Guess How Much I Love You