What you won’t see/ painful handshakes 

This past Sunday I preached at my home church. When I volunteered to do it two weeks ago, it seemed like a good idea. I had not considered the impact post-radiation issues would have on my ability to focus on study and writing or what would be involved I  preparing for the service itself.

What people didn’t see at church was the seeping mess I had to clean off my underarm area before I could even consider getting dressed, or the hassle of coming up with a top to wear that was appropriate and was least likely to show seepage or staining that I knew would be continuing throughout the service. There was cream to apply to the non-open areas when the burning is making the skin hot and super dry as well as medicated cream for the open area. In order to wear a top at all the last area needed to be covered with a non-adherent dressing. There was no way to secure this as the skin around was also damaged. This along with Advil and Tylenol and I was ready to go.

After service it is traditional for the person who preached to stand at the back of the church to meet and chat with those in attendance. I love this part of the morning! What I hadn’t thought of, and hopefully people didn’t notice was that a nice firm handshake turned out to be quite painful. 

As of today it has been a week since I finished radiation which sounds like a week past the struggle, but that is far from the truth! By Saturday I was at my wits end as to what was the best thing to do for wound care. Was it better to leave it open to the air (which meant no clothing and my arm up in the air like a wing or something) or should I try to find a way of covering it, and with what? Tom and I have been to almost every pharmacy in Fredericton trying to find the items that had been suggested to us for skin care. Most places didn’t have what we needed, some didn’t even know what we were talking about. How did the hospital think I was supposed to do this on my own?

On Monday Inlucked out and got in to see my family doctor and she immediately set me up with an appointment with a wound care nurse. When I finally got in to see her yesterday she explained that the reason for the level of pain where my skin has broken open is that it exposed the layer with all the nerve endings. Rah!

I showed her the directions I had been given and she was surprised at what they thought people could handle on their own. Then she cleaned it up and put a dressing on it that is pretty similar to what I had for the mastectomy. It needed to be so large to keep the whole area away from friction as well as having healthy skin on which to anchor it. The relief from this was awesome! Not only that, but the relief from the pressure to go it alone was significant. The dressings can stay on up to three days and I can go to the clinic for changes. I am not looking forward to the tape removal, she warned me to take stronger pain mess for that, but overall things ar better.

Some other things people in my cancer circles have mentioned that people don’t see include; 

  • the amount of energy they expend to get out
  • the fact that, while they may seem perky for the duration of an event, it may be the only time they are active for the whole day
  • some people feel their illness is somehow dismissed when people say how good they look (I haven’t minded this at all so far, keep the compliments coming)
  • the level of their fatigue

I have put links to two pictures below. I didn’t put them in the post itself because you may not want to see 
The first is of my skin before I went for help, it had progressed. https://www.flickr.com/gp/70909221@N02/zj56Vr

The bandaging from the wound clinic. https://www.flickr.com/gp/70909221@N02/4E002P

The end of the world as I know it, but I feel fine!

planaI will begin with apologies to R.E.M for using their lyric as the basis for my title and to readers for being a bit dramatic.

I know that the world isn’t about to end, but my life and future have certainly changed dramatically! The thing is that this change has really happened when I feel totally healthy (ok, other than a breast which is larger and hard with skin that feels like plastic).

I expect that I have taught my last day of my classes at the high school. It is like having retired without any of the planning or preparation. My expectation for this time of year? I had expected to be at work every weekday from 8:00 – 4:00, to be preparing Sunday services for three Sunday’s/month, and all the usual household activities.  Now, most of my days consist of chauffeuring my kids to and from university at their times of preference, waiting for, scheduling and going to have tests and appointments etc.

It is really surreal, especially when filling out forms about terminal illness. How can I have a terminal illness when I feel fine?

Meeting the surgeon

I had my first meeting with the surgeon on Halloween day. At that point I was expecting to hear about surgery and then follow-up. Tom and I went together and were rather nervous. I had heard awesome things about the doctor, and that she was very direct.

When she came in she sat on the stool beside the examination table, I was in the chair by the end. She introduced herself and then said, “For you, a picture will be wort 1000 words!” She proceeded to explain my cancer and MRI results by drawing a diagram on the paper that covers the table. She also had a book for me and turned down 6 pages for things she thought I would want more information about, and used the book to help things make sense.

This is the book!
Thanks to CBCF for providing this book!

When I walked in, I knew that there was carcinoma, some contained in a duct, and some that was invading into nearby tissue. The new news was that the whole breast was involved and that in its current state surgery was not possible. There were also three lymph nodes involved and two spots on my liver (though she said they were probably cysts). I felt like I had been kicked or something.

My heart really sank when she said I would need chemo! She went through things in great detail and I understand why the chemo is necessary, shrinking things to the stage at which surgery would be possible. So, surgery wise, I will eventually have a modified radical mastectomy. “A modified radical mastectomy removes lymph nodes in the underarm area in addition to the entire breast and nipple.” For more info.

Along with this surgery information she called the chemotherapy oncologist I would be seeing to find out what other tests she would need done. Hence the lymph node biopsy, CT scan, Bone Scan. For more info. And thus began the crazy making waiting again as I waited first to hear when the tests were scheduled, then when results would be in, and finally when I would meet my oncologists…